Ibrance (Palbociclib)
A bottle of Ibrance came in the mail today. I will start taking it tonight with Femara. Hoping that others starting on this drug will join me here to talk about side effects and how to avoid or treat them. So far, I've been warned about low white counts. I run very low as it is, probably because of my extensive bone mets. Anyone currently on Ibrance?
Edited by Mods to add Mod Note: Unfortunately, Romansma passed away in 2016. Our thoughts are with all who loved Hope.
Edited by Mods to add:
For more information on this medication, see the main Breastcancer.org site's section on Ibrance for information on how it works, who it's for, what to expect, and side effects. Also, read the latest research on the Research News on Ibrance pages.
Pfizer Oncology Together is a first-of-its-kind program for patients taking Pfizer Oncology medicines that offers dedicated social workers called 'Care Champions' to help navigate the complexities that accompany treatment, such as identifying resources to help find emotional support, and workplace transition, transportation and financial assistance.
For cancer patients taking a Pfizer Oncology medicine (e.g. Ibrance) or caregivers, please visit www.PfizerOncologyTogether.com.
For live support call: 1-877-744-5675
Comments
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Yes, I was using a pill sorter for my supplements too. Think that last big progression affected me more than I realize. I stopped taking them as regularly as I was. My diet went a bit sideways, and exercise fell off the charts. So! I'm going to make a plan. I'm going to get my husband on board so he holds me accountable. Need to do this! Need to feel better!
On the Re-Vita, it's new to me, so I'm still researching. I just know I need nutritional support for my low energy levels. It was developed by Dr Meltzer in Del Mar, Ca. It's a spirulina algae based liquid that was mainly developed to restore energy levels. Here's a video of Dr. Meltzer
https://m.youtube.com/watch?v=exQubv6h5n0
I will let you all know if I have more energy in the next few weeks. Hopeful!
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Oh, shoot, think I just saw something about multilevel marketing on Re-vita......yikes, hope not. Really not a fan of stuff that is sold that way. I know Meltzer has a clinic in Del Mar and you buy it online. Better learn more about this....
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Hope thank you for the info. Yes I am not a fan of multi-level marketing either. Will read more about it.
I wanted to mention that the Maitake drops come in a very small bottle that you can keep in your handbag. I always carry mine with me, so even if I forget to bring the other supplements, I always have that. I think it's helped me with energy.
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ladies, I thought I was the only one who was going crazy with all the pills and spacing them out. I went from 0 pills to 10/day. I think the vitamins have been helping tremendously. I go for my mid cycle blood work tomorrow and TMS too. I think he does them too much, it has only been 2weeks and too much stress, too many numbers, now that makes me tired and dizzy. I am going to try the pill sorter.
I too have an Integrative MD who works with my onc. The anti-inflammatory diet has helped tremendously also. I don't want to lose weight, but I am because there is very little sugar and no processed food. DH and I are cooking in a lot, which is helping our bottom line and the time we spend together.
Take care all, Myra
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If you don't mind me asking, Myra, what goes into an anti-inflammatory diet? And does it help with AI stiffness and that sort of thing or is it more to keep the cancer itself at bay?
I went to a great lecture by a dietitian from Dana Farber (Stacy Kennedy who was also in "Fat, Sick, and Nearly Dead"), who mentioned that too much dairy causes inflammation, so I've cut back some on that. She was also talking about phytonutrients in a plant-based diet and eating 10 servings of fruits and vegetables a day which also had anti-inflammatory benefits, if I recall correctly--very, very interesting stuff, and it sounds like the science really supports preventing inflammation, at least as part of preventing cancer (the talk was sponsored by Komen for the general public, I felt a bit like a stage iv spy sneaking in to see what the rest of the world talks about when they talk about cancer!).
I don't take any vitamins but the D and Calcium my doctors told me to, but Iended up getting a "4 times a day" pill sorter for the letrazole and Ibrance because it has 28 compartments--it was the easiest way I could think of to keep track of the 21 on/7 off Ibrance schedule (it seemed like something I was just bound to screw up otherwise!). How does everyone else keep track of that without a pill sorter?
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RosesToeses, the Dr Andrew Weil diet is easy to get off the internet. More and more, inflammation and sugar is being promoted as a reason for pain and the growth of cancer cells and then starving them. I have found it very helpful, but in the last 10 days I have been on it, I have pulled 2 muscles. I don't know if this is a coincidence or not. As for keeping track of the Ibrance, my bottle only comes with 21 pills, like the old birth control pills...LOL.
I hope that helps, Myra
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Regarding keeping track of pills, I've used seven-day pill box for the past few years. It's the only way for me to avoid wondering, "Did I take that pill today already, or am I remembering yesterday?" However, I am afraid to store the Ibrance pill in the clear pill sorter because it comes in an opaque bottle; what if it is sensitive to light? I called and asked someone at Pfizer about that, and he said he had to advise me to store it in the original container, and I could talk to my local pharmacist, which sounded sort of ambiguous. So, since I take two D3 pills each day, I just store the Ibrance in its original bottle, and take it with breakfast at the same time as my morning D3. If one D3 pill is gone, it means I remembered the Ibrance. (Then it's letrozole with dinner, and aspirin and D3 with nighttime snack.) I write notes in my planner showing the start of each Ibrance cycle and the week off.
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At the risk of sounding like I worry too much, I have to say I was concerned with how warm the bottle of Ibrance was when it was delivered to me. The Pfizer instructions say "Store at 20C to 25C (68F to 77F); excursions permitted between 15C to 30C (59F to 86F)." Well, despite the protective foam box and packet, the bottle was 82F after riding around in the delivery truck all day in spring. What would it be in summer? So I changed to having it delivered to a local pharmacy since they get their deliveries in the morning, and I go pick it up there. You would think they would be more careful. I mean, we're not talking cough medicine, here. The pharmacist from the specialty pharmacy said I was not the first person to raise this concern.
Agent RosesToeses, great spy work.
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I just got an updated list of side effects from the trial I am on. Not a surprise to those of us on this thread..nose sores are now listed as a frequent side effect ( updated from occasional).
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Rosestoeses, I'm just jumping in at the mention of the anti-inflammatory diet: in my opinion the best all around anti-inflammatory diet is The JJ Virgin diet. There is a book you can get on Amazon (ebook or in the mail). It has changed my life, just as far as aches, pains, and GI issues. You won't lose weight unless you cut calories, but the point is not to lose weight it is to stop the inflammatory process. Just my two cents! Jumping back out of your conversation now....
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Ohhh... Lenn, does your updated side effects list say anything about mouth sores? A couple people mentioned them in previous posts. I just realized that maybe I didn't simply bite my lip chewing--again, four weeks after the last time it happened; and that maybe my lip in another spot didn't just get so unusually dry that it cracked and bled. Two days ago my onc nurse asked if I'd had any mouth sores and I said no. I must be really slow, or in denial.
So what are we supposed to do for this?
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Shetland - yes .. Mouth sores were moved up as well. For the nose sores, my MO said AD ointment. She thought that nose sores/mouth sores, etc were a result of the low counts, but I have not officially heard from The trial nurse/ Mo about that.
I am careful with nasal care as I am not sure the respitory issues you have with this drug are from germs getting into these open sores or not or is it something you just get anyway. I have an open nose sore now and am fighting off a cold but I seem to be winning.
Finishing up cycle four and I have to say, this month I have had no issues with fatigue, etc so hopefully my body is adjusting to the drug.
Romansma, sorry to hear about your issues on this drug. Hope it works out for you with it
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Myra I agree with you regarding inflamation and sugar fueling cancer growth. My onc believes this strongly and has been talking about this for years. He prescribes Metformin, the diabetes drug, for most of his patients. I have been taking it for several years now as there have been numerous studies that show that, especially for women who are not diabetic, it has been shown to have anti-cancer properties. I have checked out the Metformin with the pharmacist at CVS Caremark and there is no indication that it can't be taken with Ibrance.
Interesting about the temperate of the Ibrance during shipping. Since I get the Ibrance from CVS Caremark I wonder if I can get it at pharmacy and if it would be shipped any differently. I'm concerned during the hot summer months if they can control the temperate during overnight shipping.
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Hello ladies,
First cycle done and of all the low counts my onc seems to be concerned with platlets which went from 150 before Ibrance to 96 at 2 wk checkup and now 37 during off week. Was told to stop the meds and see their hematologist for a complete workup. Grrrrr very frustrated!I don't know what this will mean for me and this drug
MYRA- seems you had low platlets and rebounded, did you ever refuce the dose or just waited to restart.
Carolyn- I saw you had similar issue. did your platlets rebound and allow you to continue?
Thanks eveyone for all your help! Told my Onc at Rush Univ in Chicago about this forum I found and she started taking notes on what information I have gathered from all of you!
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hi Irish4, I have been reduced for the Ibrance and I have started multiple supplements and diet to increase platelets which have helped tremendously! Today, 186 halfway thru. Now hoping on markers!
Good luck all. Myra
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oh Myra that's wonderful! I will ask about those supplements on Monday! Wishing you great markers!!! Thank you
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Hello everyone,
I've been continuing to read through all your helpful comments and am so thankful for this board. I am finally starting the Ibrance on Monday after a 3 week delay due to a complicated UTI (bacteria was not sensitive to first antibiotic). My Onc didn't want to start me until it was cleared up. Anyway, I was wondering what time of day you find best to take the Ibrance since it's supposed to be taken the same time every day and whether the time you take it lessens or worsens any immediate SE like nausea, tiredness, etc.
Although I don't have any words of wisdom to share with those experiencing rough bumps right now, I just want you to know that I offer my prayers, support and understanding. We are all in this unfortunate nightmare together, and no one knows better than us what we are each going through and there is great comfort in that. I wish us all well and pain free days.
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jjski62 I have found that taking it with dinner is best for me. I was taking it in the morning initially and felt slight nausea and headache. Taking it night has worked best for me, but I think we're all different. Also, now that I'm finished with the third cycle, the headache and nausea seem to be much less. But really, even taking in the morning, the side effects were not bad at all.
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I am also being treated at Rush and have started my second week on these drugs. On Thursday I will get my first lab work. I think diet can be a factor and requested a nutritionist to review my foods. We do not eat meat, fried foods, and heavily use fish for dinner. I meet with her on Tuesday and have written a general outline on our foods, including restaurants. I have specific questions about the low WBC I see in this forum and what can help boost these counts (foods and/or supplements).
I take these drugs after dinner and make sure I have a dense and caloric meal, not just salad and light food.
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Hi everyone,
I just returned from my oncologist and my first blood work after my first cycle. I finished Ibrance on Sunday, and hoped that by today white counts would have rebounded. Unfortunately,my ANC is 900, which my onc says is too low to start, and he wants me to come back next week for CBC.. If I can get up to 1200, that would be enough to start again next week. He didn't seem too concerned- told me this is par for the course. He also said that dropping the dosage to 100 is a perfectly acceptable option if it turns out that I'm not able to rebound week after week. They have not seen any difference in results between 125 and 100.
So I'll do what I can to eat well and look into supplements. I did buy a mushroom supplement- Coriolus PSP, which I thought I'd try this week to see if it helps. It's one that is suppose to be great for immune support. I don't want to add too much into the mix with what I'm already taking or I won't know what's working. Honestly, I would be fine with dropping to 100mgs if that's what it takes. My red counts were lower too, which explains my tiredness, as were my platelets. But the ANC was the deal-breaker.
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Sandilee, I am on 100 mg which seems to be fine. My WBC and RBS is lower. My ANC is almost down at this point, looks like I will be done again at day 18. My MO feels the same about the dosage, and found out today he was involved with the trial and fasolodex which worked, which just has not been published yet. Another piece of ammo in our arsenal.
Oddly, this TMs were opposite! The CEA went down and the CA 15 went up. This time my ALT, AST and lactose dehydranase all went down significantly. This is a true Ibrance roller coaster🎢🎢🎢🎢
Have a wonderful evening! Having a glass of wine since 5/6 counts were good! Myra.
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Question pearlady: does the reishi mushroom really help you sleep?
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Hi Pearlady. I wish I could give you a good reply but I am only just starting on Ibrance and Letrizol once my insurance clears it. I've been n Affinator and Exemestane for almost 18 months and my recent scan showed significant worsening in my lungs and bones. Can you please tell me how you're doing on this medication. I'm having a hard time with my insurance company approving this. Did you have any problems? Hope you are doing well.
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So interesting how the MOs are handling this differently. I've started every cycle with my ANC below 1000, usually 600-900. She has given me the option to delay, but I haven't.
I'm still in my week off will start 4th cycle next week. Trying to keep my thoughts positive and hope that it just needs time to work!
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Positive thoughts are key Romansma! I struggle with them at times but I'm working at it.
Has anybody heard of any trials that involve Ibrance and tamoxifen?
There is some concern that I still have too much estrogen circulating in my system despite an oomph. I know there is some medical community interest in a return to tamoxifen after trying AIs. Just wondering if a tamoxifen/Ibrance combo could work for my particular situation.
Not that I could evenget it. I have one of those insurance companies that would not approve the Ibrance without letrozole.
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yes there is a phase lll trial going on now. I am on tamoxifen onc is waiting for the data from this trial.
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my MO has mentioned tamoxifen to me since I did so well with it years ago. He said there is research that people in my group are seein g results with it better than Letrozole. Something else for the back of my head, if I remember it! Myra.
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Myra- How many cycles did you do before your onc took down your dosage? I wouldn't be surprised if eventually they start everyone on the 100mg dose.
Romansma- It is interesting how each doc has their way of doing things. Mine didn't give me the option, but as soon as he saw my blood work said, "You're not starting on Sunday." It does mean another trip in for blood next week, which is a bummer. I am feeling a lot less tired today, though, so I'm hoping that means my red counts at least are coming back a bit, as they were really low, too. I've also been eating really well today and will continue this week. I'll probably put on 5 pounds! Three full meals a day isn't my normal routine, but I'm trying to get a lot of nutrition through my diet so I don't have to rely on too many supplements.
Kaydeesmiles- Before I had this option of Ibrance, my onc had talked about possibly trying Tamoxifen after Faslodex. I'm hoping I still have it as an option at some point, and it would be great if it worked. Also, I don't think your insurance is unusual, as most won't pay for Ibrance without the approved combo. Maybe once the trial Carol mentioned is over and it's approved, it will be paid for.
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Carol, Myra and Sandilee thanks much for the info. I'm definitely going to discuss with onc.
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kaydeesmiles, Faslodex is another option to address your circulating estrogen concerns. I am on it for the same reason, in addition to an AI. Favorable early reporting results of Ibrance with Faslodex were released last month from the PALOMA trial. No FDA approval yet but it is coming. Some insurance companies are covering it with Faslodex already, according to my doctor - I am battling mine right now.
Interesting what several of you are saying about tamoxifen. I don't hear too much about tamoxifen in the metastatic setting but It is nice to know it is making a comeback of sorts. I did well on it for early stage too. Will have to keep it in mind for an option down the road.
Myra - What did you mean about people doing better on tamoxifen than Femara in your "group"?
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JFL, I was on faslodex/arimidex for about 6 months. Results were ok but not great. Just kind of treaded water. TM shot up when I began that combo, then kind of a slight jagged trend downward. It wasn't until I started the Ibrance that my back pain went from sharp to manageable.
I've only had one round though so I'm wondering if the TM drop and easing of pain was also a result of having some leftover faslodex in my system battling the circulating estrogen by breaking those receptors down.
I should learn a lot when the numbers come back from next week's appt.
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I feel like this thread moves so fast I can hardly keep up! I don't want to derail the current topics but I did want to say thanks for the replies and suggestions about my questions! (and I also worry about the temperature thing! We don't usually keep the AC as low as 77 when it's 90 degrees outside, so that's been worrying me--I may need to think about keeping Ibrance in the basement or something similar.)
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Good morning all! You must all be on the West Coast. Sandilee, I was dropped after the first course to 100 mg. I didn't even make it to the 14th day. I still am only making it to 18 days, but my onc is not concerned since 5/6 of my numbers are looking good. My onc gives me no option of starting again with low numbers either.
JFL, I meant that I finished the full 5 year course back in 1998, w/o recurrence til just last year. They are considering giving it again to women like myself again to see if they can mimic the results. As I mentioned earlier, my onc was involved in the fasolodex trial, it is finished, was a success, and just has not been published yet.
Kaydeesmile, when I had BC at first (age43), my estrogen refused to leave even after chemo. Tamoxifen seemed to keep it at bay, though bloodwork kept showing I was in forced menopause. Weird huh?
Well, Happy Sunday all, remember do at least 1 fun thing today, be grateful for at least one thing today, and do one kind thing today. Myra.
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JFL and keedeesmiles, curious about where the estrogen's coming from? I had thought that without ovaries it would only come from aromatase but obviously not!
(and Myra, you posted at the same time, I wanted to say I love the "1 fun thing, 1 thing to be grateful for" idea! I'm grateful I was able to set in my seedlings yesterday *and* not wake up this morning to find them eaten by pests, and my husband will be grilling lunch today which is always fun!)
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RosesToeses, circulating estrogen was coming from being premenopausal and pregnant at time of diagnosis. Not sure how long the circulating estrogen hangs around but it needed to be shut down when I began treatment, which AIs don't do. They only address production of new estrogen.
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Thanks, JFL, interesting!
I was premenopausal too, even after all the heavy chemo from stage III--sadly it doesn't seem to be that uncommon here on the stage iv boards, stupid cancer. I was on lupron and Faslodex for a year, though, and still on the lupron now with the letrozole and Ibrance, so hopefully that's that.
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Hi Romansma, We were on A/A at the same time but I couldn't tolerate it as well as it didn't seem to work for me. All my mets seem to be in my abdomen so far. The MO started me on Halaven and Faslodex in June. My TM's are normal and the CT showed NED in January. I'm a little worried however because TM's have been holding steady at mid normal until last test. They are now at high normal. I know Faslodex will not hold me forever, so have been looking to see what may come next. I wonder if Ibrance may be next.
You have been so strong facing this awful disease. I have really admired you.
Thank you to all the strong ladies who have contributed to this thread. It is very helpful. MaryAnne
PS If you have not been on a chemo for MBC, Halaven was pretty easy on me. I suffered just the usual fatigue and peripheral neuropathy.
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Roses, there has actually been a lot of research over the past few years examining the brain's role in he production of estrogen. It turns out that the hypothalamus also plays a key role, not just your ovaries.
http://www.healthline.com/health-news/strange-your...
An imbalance there can be problematic. But I believe my issue was more traditional. A severe imbalance in progesterone levels caused by an extreme amount of stress. A job that kept me going 100 miles an hour and triggered loads of damaging cortisol production. The job also did not allow time for routines that would keep me healthy. I was a workaholic for decades and did not take care of myself as my mind and body aged and needed more attention.
So, stress levels off the charts, little sleep, too much travel, erratic exercise and diet.... All led to progesterone depletion which knocked hormone levels out of balance. Liver had trouble processing and eliminating all the excess estrogen, the hormone got backed up and took over. Combine that with a ERBB2 mutation that came from who knows where and it's a recipe for cancer.
Funny thing is through all of that busy-ness I did get mammograms and did self exams, but wouldn't ya know it I got lobular! So no lumps and did not show up on mammos. Gyn just happened to notice a tiny bit of swelling under my arm during a regular pap. Was sure it was nothing since routine tests showed I was "healthy" but decided to do a biopsy just in case. Annnnnnd here I am.
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I don't think they know Romansma. I think it is still so new. The link above is a recent presentation from the doctor running the small phase 2 trial I am on. It gives a very clear explaination on how the drug works, which was helpful for me to understand it. It doesn't really expand on side effects though. Just thought it might be of interest
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RosesToeses, I like your screen pic
There does seem to be a lot of young women around here.Kaydeesmiles, I had no idea that estrogen was produced by the brain in addition to ovaries.
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JFL, it's still early days in that area of research but the results so far are fascinating. It could eventually open up a ton of possible treatments, not just in regulating estrogen in breast cancer patients, but in using hypothalamus-produced estrogen for Alzheimer's patients.
Sorry to derail guys, I get nervous in the lead-up to new blood work and tend to babble ☺️
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Great info, thank you. Who knew our brains could make estrogen? The Dana Farber video explaining the new trial coming up was good too. Good to see that Ibrance is being considered at an earlier point in the disease process. I think the lack of huge side effects is making this drug the star of the show right now. I'm guessing , if your marrow is in a little better shape than mine, you could feel pretty good on this.
Danish, good to hear from you. Happy to hear Haliven has kept you stable. Hoping that continues, but if not, Ibrance isn't too hard to take. Low counts seems to be the issue, but if you can stay out of danger zone, it's not too bad. Sure could be worse! Affinities was much harder, I must say
I need to go back and see where I was in the cycle with that last pain flare. I seem to be ramping up again the last few days. I may see a pattern developing......just call me Nancy Drew.....or Columbo.....hmmm, I'm aging myself. Need a current day sleuth!
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Good morning everyone. I feel that I am so out of touch having not checked in this weekend. So much new information I need to spend a while to read it all.
Dunesleeper I find that the Reishi combined with other herbal sleep aids has helped me. I have had big sleep issues. I used to taking Ambien, Lunesta or Ativan and will not take anymore. Even though I didn't take all the time, they started having th eopposite effect for me. Ativan helped, but there has been a recent study where Ativan in extended use can contribute to Alzheimers. I told my onc that there's a good chance I won't live that long to see that happen, but my luck I will get the Alzheimers before the BC gets me.
Myra about the Tamoxifen. I took it for 3 plus years before my bone mets in 2001. In 2010 my onc recommended that I take it again along with Aromisin. I took for almost 3 years and in combo with the Aromisin, it was more effective than Aromisin alone. So I think there's good potential with Tamoxifen. For me it didn't get me to NED when I took the second time but helped keep me stable. At this point, stable is great.
I've not yet had Faslodex, so my onc told me that if the Femara/Ibrance combo doesn't work, we'll revisit in the future. I'd rather not use up all my options if I don't have to but nice to know that its out there.
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Thanks Hope, I am trying to digest what they are saying. I don't know if they believe the phase 3 will confirm the results of phase 2 or not. I did like the doubling of overall survival rate, for those of us with mets, I don't think we were expecting it to be a cure, but another bit of ammo in our arsenal to extend our life, until hopefully a cure comes along or major extension of life making it a real chronic disease. Does anyone ever wonder why HIV/AIDS, had such great results with meds and disease suppression and BC has been years and years and billions of dollars w/o the same results?
A lot to ponder, have a great day all.....Myra.
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Myra, I wonder about the HIV/AIDS comparison a lot. I think it has a lot to do with the cocktails for HIV, whereas it's been standard operating procedure in many places (not all) to give BC patients one drug at a time.... or suppress one thing at a time. There is also a huge focus in HIV treatment on protecting and boosting the immune system. I think it should be that way for us too. I'm no expert by far, but I'd like to attack this sucker from all angles with a cocktail - while building up my immune system as much as possible
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I think immunotherapy is where we are going with cancer and I really hope it works better than these incremental steps we've been seeing for decades now.
On the subject of Pablociclib again, the trials have shown a doubling in the Progression free survival, but only preliminary results in Overall survival. The preliminary results for overall survival were not statistically significant and this threatens the continued approval of this drug. In the preliminary results, Pablociclib showed 37.5 months OS compared to 33.3 on Letrozole alone. The hope is that this next set of OS results will show a significant increase in survival.
None of this applies to any of us personally. Some of us will be exceptional responders, others will need to move on quicker. But, I like to keep up with the science so I understand what I'm getting myself in to.
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Thank you Hope. I have often wondered about the HIV/AIDS comparison, but I think a lot of it has to do with that there are so many different types of breast cancer. I'm not an expert on HIV, but don't think that is the case.
Kaydeesmiles I agree with you about the immune system. My onc is an integrative oncologist and believes very stronly in that, which I why I chose him. I truly believe that is why I have been able to tolerate most of the drugs that I've had to take over the years and have had less side effects than many other women. When I first started with him in 1997 there were no other oncs in NYC that offered what he did. Now I think its becoming more common nationwide.
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Thanks for the link, Romansma. It's possible that the Phase III results could impact us personally, I suppose, if no improvement in overall survival is found. The FDA could decide to withdraw their approval, as it was conditional upon the expected results. Although I hope they would allow those who are already on it to continue if doing well.
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Okay you guys, I have to make a choice and would really welcome help. I was on Femara before and it stopped working. Then moved to Afinitor/aromacin for 3 mos of awful SEs, then put on the Veliparib/TMZ trial for 2yrs and 2 mos. with no shrinkage, but the tumors stayed stable. It has stopped working and all my tumors are bigger with a new one in my cervical spine, my other hip (huge one is on one side already! ) and 2 new rib spots.
My onc. Is suggesting I get on a new trial after a "wash out". The new trial is with the study drug from Lilly called Abemaucilib which I would take with Falsodex. The catch? It's a 50/50 for a placebo. Abemaucilib is a CDK 4/6 inhibitor just like Ibrance. The choice? I could just take Ibrance without Femara since Femara did not work. At least I would know I was getting the real thing with Ibrance. There is also a third choice to go on Xeloda.
What would you do? The nurse told me that they will know if I'm on the real thing, not placebo, if my blood counts drop and I feel sick and growth continues as visualized on my scans (Hooray?). At that point I can stop the drug, but time is lost with continued spread of disease. One good thing with the study also is that the company and/or center will cover the costs. Money is unfortunately an issue.
There are few ppl I can TRULY talk to. They say things like, "why don't you get IV Vitamin C?" or "why don't you get German measles or polio injected into yourself? I saw that on TV". Yeah, okay. Sounds good.... I'll do just about anything rights now, but we know in reality these new approachs are not offered just like that.
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Vivian I am in a similar situation to you. I was on Femara for almost 5 years and it did keep me NED along with Herceptin. I moved on from Femara in 2008 when I had progression. I was very concerned starting the Ibrance/Femara. I felt that if Femara stopped working after almost 5 years, why would it work now. But the only way I could get Ibrance approved by my insurance was to take it with Femara. I have spoken to my onc about what we will do if the results are not good. So far everything is stable, but as I said, I'm very concerned and have only completed three cycles.. He said that unless I had major progression, he would then add something else to the mix. Not sure what. He also told me that since the Femara did work for me, possibly getting it with the Ibrance, it would work again. So I'm in a wait and see pattern now also.
I don't see Tamoxifen listed with your prior treatments. Is that a possibility to add, say either Tamoxifen/Xeloda or Tamoxifen with the Ibrance?
My onc has said that he's read that Abemaucilib may be a better drug than even the Ibrance. I'm sure it's a tough decision. You say that you would know if you are getting the Placebo. How long would you have to wait until you know if you were on the real drug or the Placebo?
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Vivian, I am starting my first treatment since IV DX tomorrow. My MO tried very hard to get me to do the same study. I said a big loud BS! I don't think Stage IV people should be included in studies with a placebo 50/50 chance. I told her flat out that I want Ibrance/Fulvesterant combo. She said OK and tomorrow is the day. I understand that trials are necessary, but call me selfish. I'm not willing at this point to be a guinea pig for science.
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Northtexas I agree with you. I am not comfortable with anyone stage 1V having the potential of getting a placebo. The only issue for me was that my insurance wouldn't approve Ibrance with anything but Femara. I really hope that changes in the future as I know they are doing studies with Faslodex and even some chemo drugs.
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Pearlady, I think the timing of my stage IV DX was just at a good time per the ending of the Ibrance/Fulvestrant study. It ended April 15 while I was still undergoing testing. Praying for good results for myself and all you other lovely warriors! Susan
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I am starting the same medications tonight, and would also like to hear from others in regards to the possible side effects. How is everything going with you?
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Susan praying for you also and for all of us. I didn't realize that insurance will now prescribe Faslodex with Ibrance. That's great news. My onc did tell me not worry that if the Femara/Ibrance didn't produce good results he'd switch to Faslodex. I think his approach is why use up a drug that I haven't used yet unless he has to. So far I have been stable.
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That is great news about getting Faslodex with Ibrance. Vivian, is there a chance you could get on that combo?
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Hi everyone,
Thanks for all this great info, this thread really is going so fast and I can hardly keep up!
Vivian, I think you should try to get the Ibrance instead since it is similar to the Lilly drug but the Ibrance is FDA approved so you wouldn't need to be in a trial and could be sure you are not on a placebo. A friend who read about these drugs said the Eli Lilly drug might show the most promise of the 3 similar drugs (Ibrance, LEE01 and EliLilly), but someone posted on this thread that it didn't work for her, so I wonder how the trials are going. My friend said you take the Lilly drug every day (no off week) and she said it prevents blood counts from dropping as much as the Ibrance, but the person who posted on this thread said her counts did drop too low and she had to discontinue, so it will be interesting to see the complete results of the Lilly trials. If you tell your doctor you want the Ibrance (and he agrees it will help you) and you show him the Pfizer card, hopefully his staff will work with Pfizer and your insurance company to help you get it affordably. At least you will know what you are getting. Good luck with your decision!
Pearlady, I don't know how you can keep track of all those supplements - I messed up one day and took Prilosec instead of Ibrance, will have to be careful and keep the Ibrance/letrozole in a separate container. Hope you are getting some rest.
Hope you are all enjoying some nice spring weather!
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Hi mannymo,
The biggest se for most of us initially I think is a significant drop in blood counts. So don't be surprised if some fatigue sets in. It certainly has with me especially after Round 2. Beon guard against germs. It's possible there could be some stomach upset too but everybody's different.Like some of the others I also have headaches that I think are letrozole related. My insurance company is one of those that won't cover the Ibrance unless it is in combination with letrozole.
Holly this weather is the best! Does wonders for my mood.
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Thanks to everyone for your responses. Your advice is so helpful! i am definitely going to check if my insurance will cover Ibrance with Falsodex and I will push for it. Will also look into the Pfizer card. I'm not so interested in Femara again because I think like you, Pearlady, my Femara quit after 5 years, too, why would it work now?
I was told Tamoxifen was not for me because I'm post menopausal (ovaries were removed). I don't believe Xeloda is an Estrogen Receptor Inhibitor so it is not a drug of choice to take with Ibrance. My onc wants to keep Xeloda "in my back pocket" - which does not give me a lot of faith in Ibrance! But, I know, no negative thoughts allowed! We still need back pockets.
I am not too excited about a placebo either. The way I am supposed to know if it is a placebo is because on my first scans I would show more tumor growth and when my blood is drawn it will be too normal (no drops). Oh great! I will have more tumors! I already have "suspicious" spots on my liver. The scans (bone, CT, MRI) will be 9 weeks after my trial starts, I think but not sure.
My onc is pushing for the study Abemaucilib/placebo with Falsodex. Have you guys had any Falsodex experience? I have read the Falsodex Girls thread and it comes with its own problems too!
Again, I really appreciate your input. you guys got me thinking and I am now making of list of questions for my doc.
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Vivian, I think that is a good idea to see if you can get the Ibrance and It should be less stressful than being on a trial and possibly having the placebo. I tried Faslodex and didn't really have symptoms except for itchy red bumps on my skin, but other people said that the bumps can be controlled with creams like benedryl and hydrocortisone I think (i never tried it because once I went on the Ibrance/letrozole and off the Faslodex , the itchy bumps disappeared completely which is great). The Faslodex didn't work for me, but maybe it would have worked in combo with the Ibrance. I hope you get an answer soon, I know it is hard being in "limbo" trying to figure out the next step, but you will feel better once that is settled. Good luck!
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Vivian, I had three and a half stable years with Faslodex. If I could have stayed on it indefinitely, I would have gladly. At first I had a bit of itching for a couple of days after my shots at the injection sites, but after 6 months, they settled down a lot. And even when they were itchy, Benedryl helped a great deal. My tumor markers went from 260 down to 3 within the first year. I think it's one of the best drugs out there, if, and it's an important if, it works for you. There is no drop in blood counts or other blood related side effects. I did have hair thinning, starting about the second month, but it stopped thinning around month four and then grew back entirely.
Your signature shows that you were on Faslodex for a while. What happened?
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Vivian did you ask your onc why he is pushing so hard for the study? Just curious why he would recommend that over Ibrance. Especially when you could take the Eli Lily drug in the future without a clinical trial.
Iteresting about the tamoxifen. When I first completed treatment I was put into menopause from the chemo. So when I started on tamoxifen I was in menopause It did work for 3 years. Not suggesting you take it now, but it's always something to think about for the future. I do know women who have taken after menopause.
Good luck with your decision. I pray we all get good results from Ibrance.
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I think my onc is not really pushing hard for the study, but did show a preference for that decision when I was sent home to think about the options. My gut feeling is that she does not think the Femara will do anything and wants to try me on Faslodex - then she will think about the CDK inhibitors and deal with the Femara/Ibrance pairing. I have always felt like I have been getting the best of care. Now I am waiting for my follow-up appt. to be scheduled as they said they would and I am starting to question my faith in my onc and the treatment center.
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Re: comparison to AIDS
Only a very small percent of the billions raised goes to applied research. Most of it goes to early detection (which really does not cure anything), awareness, and more pink stuff. Last time I hear it was 2%.
I think it should be 30% because: 30% of early stage breast cancer develop into metastatic breast cancer.
The AIDS advocates threw ashes of their loved ones into the white house lawn. They were persistent, and their grassroots movement had no affiliation with big, organized corporations.
What MBC needs is a voice, maybe a celebrity, who will champion our cause and unite us.
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Shoot adverb, well said! If I see one more pink football helmet, yogurt cup or ribbon I am going to scream! We need to stop pussy footing around and get some real muscle behind this madness! Myra
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Sign me up for the March, the Revolution, whatever we want to call it. I'm sick and tired of seeing these new drugs that cost $120k a year and give us an extra 1.7 months of overall survival! Give me something I can get excited about! Give us an extra couple of years, or how about this? Give us a FN cure! Need to find our voice soon. Maybe Jolie? Who else? Let's find someone now and get this moving. I want to be here on this earth in 8 years when my son graduates from high school! Screw that! I want to see him graduate from college, get married, and have babies. Soooooo, drug companies, I'll need a $120k drug that gives me an OS of about 20 years, k? I need a trip to the White House lawn, soon. I'm flipping mad!
Ok, that outa the way. Vivian, many of us failed Femara. Ibrance works by blocking enzymes/pathways that cause the Femara to stop working. So, by taking them in combination, in theory, Femara should work again. I think if it were me, I'd try Ibrance/Femara first before going to the trial. I'm not a huge fan of Xeloda, so I'd save that one for later. Just my 2 cents.
I've been reading about infrared saunas and their health benefits. I went for my first 40 minute session yesterday. Lots of sweating! Hopefully lots of toxins being released! Anyone else done this? Wondering how often would be beneficial. I'm thinking 2x per week right now, but have read some do it daily. Hoping for some pain relief.
Also looking into other alternative therapies to help me feel better and enhance my treatment on Ibrance/Femara. I've tried acupuncture before, but didn't get a lot from it.
K, started round 4 of Ibrance/ Femara last night. As I held that little bottle in my hand with almost $10k of pills inside, I willed it to work! Then I crossed my fingers, my toes, and finally, my eyes!
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Shoot Hope, well said also, let's do it! We have been quiet way too long! And what the heck is an infrared sauna
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Let's do it! Wish I could lead this, but my energy reserves are a bit low. I will find the energy as soon as this army starts mobilizing, though. Can't believe we've been placated for so long with pink crap!
Remember the old saunas that had the rocks and steam? Well this is a little different heat source, but same idea. I'm sure you've read about fevers mobilizing the immune system. Other countries are using hypothermia to do the same. Anyway, infrared has been shown to expel toxins better than traditional saunas. Traditional saunas produced about 97% water and 3% toxins, whereas infrared sweat contained 18-20% toxins and less water, lessening the burden on your organs, such as skin and liver to release these toxins. Then, your bodycan function better, along with your immune system. Studies are showing impressive pain relief too.
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Have started the ball rolling. Sent a PM to the Moderators to add a new thread....we are a huge voting bloc....time to take back our power. Myra
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New thread LETS GET ORGANIZED. Myra
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Nice, Myra! I'm headed over now!
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Great idea, Myra!
I just returned from my onc's office, where I returned to see if my Granulocyets# has come up enough to restart the Ibrance. It has been two weeks now since my last Ibrance pill. Last week my count was 900, which wasn't high enough in his mind to restart. Well....today they were at 800! I have no idea how that happens. So, no Ibrance for me today, boo. And I'm worried.
I go back in a week for another test. My onc did lower my dose to 100mgs, based on these results. I hope this helps. Otherwise, I don't know if I'll be able to stay on the med.
I wish he would just let me go back on it anyway, as some of you here have been able to do so I could at least see if it would work. I'd even agree to live in a bubble.
All of my other counts went up- RBC, hemoglobin, WBC, Platelets...just not the one he cares about.
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oh darn Sandilee. Myra.
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Following links from the Let's Get Organized thread to the Where is the Outrage thread, I came across the website of Metavivor, which I realize I haven't checked out for a long time. There's some very interesting information and research going on, some of which has been funded by Metavivor donations.
One article of particular interest to me and probably to other women here who are experiencing a low neutrophil count due to Ibrance is this one:
http://www.metavivor.org/research/research-news/ho...
It 's interesting that the very cells that fight disease in our immune system can be co-opted to promote disease. Cancer is for sure a sneaky beast! I find it fascinating that they are experimenting with lowering the nuetrophils intentionally to decrease metastasis.
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Hello sisters, I got my first Faslodex injections today and took my first dose of Ibrance. When did you all start feeling SE? And what about hair? Did you lose some or all? Nervous but very hopeful. Susan
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I'm with you, Romansma! I want to see my kid graduate, get married, and have babies! Yes, Adnerb, at least 30% to MBC research and cures! But how can we be activists when we are just struggling to take care of ourselves and our families? Who will help us? I suppose if more people knew the truth about that 30%... My plan is to last long enough for immunotherapy to become available.
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Pearlady, you were wondering about CVS Caremark when we were talking about Ibrance storage temperature. Yes, Caremark will ship it to your local CVS if you choose. I went in to mine and talked to the pharmacist there. She said the Ibrance comes in the same packaging and probably on the same truck, and usually gets delivered in the morning. Delivery trucks often deliver to businesses in the morning and residences later in the day. So I chose to pick up my Ibrance at the local CVS and spare it riding around in a hot truck all day.
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NorthTexas, If you feel well today after your Faslodex injections, you will likely continue to feel well. Sometimes I was a little tired that evening, but not always. I experienced bit of hair loss the first couple of months (noticeable only to me) but then it came back entirely. With Ibrance, only fatigue around the second week. The problem with the Ibrance is keeping your blood counts high enough to continue taking the drug. That seems to be an issue for most of us, but apparently many docs are lowering the dose if it continues to be a problem. Good luck to you! Faslodex alone can work for years for many of us, and if it increases with Ibrance, horray!
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Thank you Sandilee! I love you gals!
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ShetlandPony thanks for the information about CVS Caremark. I am going to call tomorrow to arrange it. Especially with the summer coming.
Hope I know some women that have gone to Germany for Hydrotherapy. I would love to do it. Someone on these boards mentioned that they offer it in Philadelphia at Jefferson. But I imagine it's not covered by insurance. Do you know about the Biomat? It produces Far Infrared rays and gets very hot. My onc has them in the treatment room but i am one of the few that use it. I actually bought a half body mat that I use not as often as I should, but I do love the sweating. My oncologist has recommended it for his patients but some women say they can't take the heat and don't like sitting on it. To help kill the cancer I'll put up with heat. You can search on the Internet. The best ones are said to be made by Richway
Now I'm inspired to go sweat.
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Today was my first lab and this evening my onc called and said I needed to stop the drug. When my counts come back up I will restart with a lower dosage. Are there many of you able to handle the full dosage? I would like to get feedback on what dosages others are on? Do you start and stop this drug frequently?
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Max Otto, I am on the 100 mg and usually get to day 18 before having to stop. Myra.
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Yes, Pearl, I was reading about the Biomat. I'm going to use the spa here for a bit to see if this gives me any pain relief, energy, etc. if it does, I may look to invest in one for myself.
Day 2 of cycle 4, down the hatch! Maybe the heat and sweating will help my toilet dwelling blood counts!
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Hi, im posting this on behalf of my mom. She was diagnosed with stage 4 breast cancer with bone mets 2 days ago. Despite annual mammogram scans, she was still diagnosed at such an advanced stage. She is coping fine and staying very positive, both me and my younger sister we are trying very hard to stay positive also. We are meeting the medical oncologist again on Monday to discuss about treatment options, she did brought up palbociclib during our last meeting and a possible participation in one of the palbociclib clinical trial (btw we are from singapore) but it seems that my mom's blood test shows that shes anaemic and something else (the doctor prefer to elaborate on monday) that might not get her a place in the trial. Right now there are so many uncertainties and its really hard to not feel helpless.
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QiXian Ho,
I'm sorry about your mom. Please know that there are a lot of different therapies that will help beat back your mom's cancer, so don't feel bad if she can't do the palbociclib- I'm sure there will be a treatment plan that will help your mom. Palbociclib(Ibance) isn't all that easy even for those of us with normal blood counts to start with. People are living with bone mets for many years, so don't give up hope. You'll learn a lot by reading some of the other threads dealing with your mom's diagnosis. Hugs to you.
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Thank you sandilee,
Since palbociclib has already been approved and its currently available commercially, assuming that the insurance is willing to bear the cost of it, what would be the difference between taking it in a trial or not? What should i be looking towards given her diagnosis, what is the best case scenario?
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If you are in a trial, you won't be able to choose if you are on the trial drug or not. The trials are blind, meaning you are put randomly in either the trial drug with a standard drug, or a placebo with the standard drug.
What you will want to do is to talk with her doctors and find out which options he or she recommends and why. Discuss the side effects of the various treatments, the doc's reasons for choosing one over the other, and do what feels right to your mom. There is usually more than one "right" choice, especially for someone just diagnosed. Best case scenario? That her cancer stays in her bones for 15+ years and she is able to keep it stable with various hormonal and targeted treatments. This is a real possibility, so have hope and encourage your mom to participate as fully as she is able in the decision making.
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sandilee, thanks much for the link to that article. It is indeed fascinating and could explain why the responses to Ibrance can be so different from patient to patient.
Some of my post round 2 numbers are back and my ANC is in the tank - so I'm hoping that by driving the neutrophils down sooooo low I'm at least targeting the right thing. Fingers crossed.
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Good article, Sandilee. I'd be interested in knowing more about how Pablociclib measures up where TAMs and TANs are concerned. Very complex, indeed. Cancer sure is a smarty pants, eh? Reading that article raises so many more questions. It makes you question what all the numbers truly mean. Is it good or bad that your ANC is low and same for tumor markers. Could an increase in that marker be good, at least in the short term. I dunno! On that note, I think I need some coffee!
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Sandilee thanks for posting the article. Really great article, but it raises so many questions for me. It would seem that what is happening in most cases is that the cancer eventually outsmarts the drug, no matter what drug we are taking. At this point, I'm hoping that the Ibrance/Femara will outsmart the cancer for as long a time as possible and that in the meantime, more new drugs will come along. Or even better, a way to control the TAMS,TANS and Neutrophils.
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All, I need your help! My Ibrance was denied by insurance. In part due to combo with Faslodex but also because the person submitting it stated that I was Stage 2, premenopausal and didn't include my ER/PR and HER2 status. I saw the appeal letter which didn't correct any of the mistakes and didn't state anything about why Ibrance should be approved with Faslodex. It was in bad shape. I have taken on drafting the appeal letter myself. I want to ensure I give myself the best chance of having this covered. Do any of you have suggestions about successful appeals? Any advice is appreciated. I know many of you went through this process already. My circumstances are a little different than most because I am seeking Ibrance in combo with Faslodex which has not yet received FDA approval.
Northtexas and any others on Ibrance/Faslodex, did you have to appeal your insurance company or did they automatically cover it?
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JFL - My insurance denied Ibrance the first time because the administrator wrote my stage as Ia, which was my original diagnosis, and the insurer didn't read the attached pages to see that I had metastasis. Once that was straightened out, it went through quickly.
Your trouble may be the stated stage more than the Faslodex, as the drug has not yet been approved for early stage cancer.
So chances are that when that is corrected, along with your hormonal status you will be able to get it! Much more likely. Who is your insurer? It seems like the only hang up is the Faslodex, and the lousy appeal letter submitted.
I might call Pfizer and see if they have any suggestions. There are trials with Fas that are going well. If you could site these to the insurer, it might help. The drug company should be able to help with their knowledge of ongoing trials. Good luck!
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Gosh JFL, I have no answers for you. Perhaps because Fasolodex has not been released for pairing with Ibrance. I was very lucky, I had no problem getting approved with the Femara
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Sandilee, that article was fascinating. I am in the field though, and I had a ton of questions after reading. Is my ANC good or bad? Is that why most of us who have low counts do not get infections usually when our counts are low. I know some of the MOs have noticed that their patients with low counts have been ok. Do the TANs come in and take over? Wow, lots of questions. Myra
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I noticed in my blood work yesterday that while my granulocytes # was low (0.8), my monocytes and lymphocytes were abnormally high. That has never happened to me before this medication. Very strange, but they may be filling in for what's missing.
I got a call from my onc's NP this morning telling me she sent a prescription to CVS for an antibiotic to keep on hand in case I get a fever. So they are still concerned about my resistance. But I feel great. Damn neutrophils!
I'm going to be very upset if they don't bounce back next week.
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I was only able to complete two full cycles of IBRANCE/FEMARA before taking a rest for 3 weeks . I was able to continue the femora during this period. I go to the Oncologist Tuesday to see the blood levels. was thrilled that the TM's dropped to 6 before I stopped.
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JFL, no I didn't have to appeal. My Dr explained that somehow the 2 drugs were approved separately somehow. Its a really new combination of drugs. Sounds like the administrative people at your Dr office didn't do a very good job for you. Can't they resubmit with corrections made? I'm hoping you can get it approved soon!
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Thanks for the great tips ladies. Dumb question Pearlady...how do I make the thread my favorite so I can get notifications? I keep forgetting and then come back here weeks later and it's like DOH!! LOL.
I had a blood draw only after being on Ibrance/Femara for two weeks and of course my TMs went up! So annoying. I too have not had much luck with treatments and had low TMs for maybe 6 mos.
I still have rib pain so I'm discouraged. I'm on the one week off right now and go back to Onc on Tuesday. At least the TM test appear to work for me.
Hugs to all
Chris
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Thanks for the info, Sandilee and NorthTexas. They can resubmit the appeal. I spoke to my employer and it will go to an independent third party decision maker. The decision will be final so no mistakes allowed. I am drafting the letter myself this weekend for my doctor. My DH is a doctor and used to review appeals through work. He will review it after I draft it. If it is going to be denied, I want it to be because it is not FDA approved, not because of factual errors
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Good luck, JFL!
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Hello, My ONC just called, Tumor markers are up 50 points. Only finished my second round of ibrance, We were gonna wait until the middle of June to do Ct but now it is gonna happen next week. I was really hoping this was the one that was gonna work. Who knows whats next. Really disappointed.
Redroan
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so sorry Redroan and Chris. Could it be flares? One of my TMs went up and one went down. Hopefully mid June they will both go down. Myra
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Chris and Redron so sorry your TMS went up. Can you perhaps stay on Ibrance with something ibe instead of Femara? But i think only two weeks is not indicative. My markers went up slightly after my first cycle and then came back down. My onc has said that he would try it with something else if we didn't get the results he wanted but I'll take stable. Just had my TMs checked today so we'll see. I feel as if i'm living from one blood draw to the next.
Chris you just need to make this one of your favorite topics by clicking on the link at the beginning of the thread.
Chris I see that you are Her2n+ also. I'm curious if you are still on herceptin and if you've had Perjeta. I am still on herceptin with the Ibrance. Most of the women on Ibrance are not Her2nu+. My onc was surprised that my insurance approved it.
Praying for all of us. Enjoy the holiday weekend.
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Hi Folks,
New to this thread and hoping for some insight on Ibrance as my Onc has ordered for bone and now liver mets. In reading the post most of you seem excited about this option but are concerned with managing the side effects. I am finding my self in a quandary lately with cancer treatment as a whole, and have to wonder if the risks with these drugs are starting to outweigh the benefits. I recently read one in three people have cancer of some form. That statistic really resonated with me . I must say honestly, I'm not sure I have much confidence in the FDA as I also have a list of 27 carcinogens they have approved for use in consumer products. So much of conventional treatment is driven by pharmaceuticals. As I was waiting for my scan results, a drug rep came into see my Oncologist to discuss clinical trials being close to publishing, Sometimes I just think there has to be a better way to care for us. Hope I didn't offend anyone I am just really concerned and confused on many levels.
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Redroan,
I'm sorry to hear your doc feels Ibrance isn't working for you. Did he say what you might try next? Best wishes, and let us know how the CT goes and what you decide.
Hi mccall,
For me, the risks of Ibrance are pretty minimal. Mostly, the risk is that my counts won't come up fast enough for me to take it. I feel well on the medications, but when your neurtrophils drop as they do on Ibrance, you don't really feel and differently and wouldn't even know there was a problem if not for the blood work. That's why they do them before each new cycle, but each doc is different with what levels they are comfortable with. I also think it probably depends on the doctor's evaluation of the risk of infection for a given individual, too.
Anyway, good luck to you if you start this one. So far, few on the board have been on it long enough to see any results, since it's so new. We're all sort of test subjects, I think. The biggest problem I see (other than the fact we don't even know if it's working yet) is that we have to have frequent blood draws and wait periods to keep it going. Other than that, it's not hard.
I understand your frustrations, though. It does seem like there should be something, after all these years, to cure this beast. Meds giving us a few more months, or even a couple more years, just don't cut it.
Best wishes.
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Thanks Romansma, I am taking your exact advice and will be starting Ibrance/Femara next week.
I can't agree more that we need a voice - and a different approach to actually finding a cure. I know a real cure is linked into our own immune systems. And you are right that it is hard to get excited about these drugs as a kind of "magic bullet", like Dorothy clicking her ruby slippers. We are far from home.
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Hi Pearlady! Thanks for the kind words. I agree two weeks might be soon. I will know more next week. Originally my diagnosis was Her2-, then after my mastectomy it was Her2+ and now that it's mets to my bones it appears to be Her2- again. 😓. We also tried Herceptin/Perjeta but it wasn't working. Sigh..
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Romansma, how are you doing? How long have you been on the new meds and have they started working for you?
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Best of luck to you Vivian, really hope Ibrance is the magic you need!
Redroan and Chris, really sorry about your markers. Shoot, you both just started. Hormonal treatments, like this combo, take some time to work. I really hope the scan shows a different pic and you get some time to allow this combo to do its thing.
Good luck with the appeal JFL. Is anyone here taking Ibrance with Faslodex off trial? Anyone get their insurance to cover it? I didn't think it was FDA approved, therefor, insurance would deny. Hope I'm wrong.
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Thanks for the well wishes, I am trying to be positive and I do respect my onc for being cautious, We have not discussed what is next yet, He is waiting for the ct I know. And I guess I will just try to stay positive and think the best . Maybe it is just because the ibrance is working that markers went up.
Best of luck to you all, Stay Strong,
Redroan
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Quick update: I have completed two cycles of Ibrance+letrozole (having started after a PET-CT that amazingly showed NEAD following taxol for liver). Had a PET-CT today, and it remains NEAD. Tumor markers holding steady in normal range. Blood counts causing no delays so far. But I have a heck of a mouth sore that has lasted over a week.
You go, JFL!
Good wishes to all.
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Chris sorry that the herceptin and Perjeta didn't work for you. I was her2nu+ when I was first diagnosed. When my bone Mets were biopsied in 2011 it showed as negative but the ER/PR was still positive . My onc told me that Her2nu doesn't always show in bone mets and that he was sure I was still positive. The Perjeta and herceptin that I had subsequent to the biopsy did work but yet Kadcyla did not. So who knows. Just hoping that the Ibrance/Femara works for all four us. My onc keeps telling me to be patient that this combo could take a while to work.
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Hello everyone,
Popping in to add some data. After Round 2 of Ibrance I got another slight drop. Only about 10 points but I'll take it and be grateful. I really do believe that an Ibrance and Faslodex or Tamoxifen combo might be more effective for me, so I'm eagerly awaiting more results from those trials and hopefully FDA will approve soon.
My numbers are still in the tank and I can definitely feel more fatigue after this round compared to the first. but thank goodness still no fevers. We're pushing on and I'll start Round 3 next week.
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That's great, kaydeesmiles! Any drop in tumor markers is to be celebrated. Can I ask what your ANC is hovering around? Has it gone down from one cycle to the next, or held steady? Thanks.
I'm not-so-patiently waiting to start my second cycle on the lowered dose. I'd be very happy with any drop in tumor markers, even 10 pts.
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So sorry to hear about the markers going up and, JFL, about the initial insurance denial--hopefully the appeal with more info will be all it takes.
I found out last week that my tumor markers went up, too. But since it wasn't even a full cycle when they were drawn, my onc says it's too early to be concerned. I really wish I could get God to just hold up a sign or something to let me know what's going to happen, it's kind of stressful waiting and wondering how this is going to go.
Oh, and kaydeesmiles, great news about your markers dropping! Wishing us all more good news to come!
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Thank you Roses, I'm really hoping I can keep pushing the TM down.
sandilee, My ANC dropped to a dismal 0.6 after the first round and is hovering there. Hopefully round 3 won't push it any lower. And yes, yes any drop is a good drop!!! I know tumor markers are not always reliable in all people, but they've been a pretty good indicator for me.
Rooting for you and wishing you a successful second round.
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Romansma, I just started on Ibrance/Faslodex combo. Not in a study. I told Dr that is what I wanted and she somehow got it approved for me.
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Thanks, kaydeesmiles. Did your doctor have any problems letting you start your second round with 0.6? Any words of wisdom or tips for avoiding infection?
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sandilee, he didn't have any problem with letting me start the second or third rounds. But he did tell me to call him immediately if I even thought I was getting sick.
I am worried about the neutropenia though and I've cut air travel significantly. And when I do fly.... that quirky lady wearing the white gloves? Yeah, that would be me. I'm super careful about surfaces like door handles, atms and elevator buttons. I do avoid large festivals/crowds. Maybe I'm being overly cautious, but I do want to stay on this drug if it's possible it could work for me. I don't want to get sick and be snatched off of it.
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No, I don't think you're being too cautious. I'm the one who recommended the white gloves, and I use them, too.
So glad to hear that the drug seems to be working for you. We need some positive news! Stay well!
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Those of you with increased tumor markers, just wanted to say I am thinking about you. Part of what makes this dx so difficult is the unknown status. It is hard to mentally prepare or know what to do when one doesn't know exactly what is going on.
Also thinking of those of you with tanking or troubling counts. Hang in there.
I was looking at the ASCO agenda for next week's meeting (May 29 - June 2). There will be many trial reports on Ibrance - with Femara, Faslodex and Tamoxifen, including results from various subsets of people - premenopausal, over 65, etc. Not sure how far along the various trials are (other than the Faslodex one, PALOMA-3) but I hope the updates continue to show promise with this drug. I am going to wait to file my Ibrance appeal until after the details of PALOMA-3 are announced at ASCO on June 1. It should bolster support for my appeal since the April announcement about Faslodex/Ibrance success didn't include any details other than that the Phase 3 trial was stopped early because it met its primary endpoint on progression-free survival. Also, Pfizer is holding a conference call with analysts and the public on June 2 to discuss ASCO presentations and oncology breakthroughs. I plan to listen to that as well
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That's very interesting, JFL. Do you know if this conference call on June 2 be available online? How do you plan to listen to it? I like your plan. I think that having those trial results could make a big difference in getting your approval.
Thanks also for your encouragement to the rest of us. I'm getting very antsy about sitting here waiting for my counts to rise (and formulating a case to my doc about why I shouldn't have to wait). It's frustrating to see women successfully continuing the drug with lower counts than mine when my onc, as much as I respect him, is making me wait because he doesn't believe it's worth the risk in my case. I'm willing to take that risk so I can see if I'll have results.
We are all so different, at different stages of health, age and cancer progression, so I have to remember that what's good for one may not be good for all. But still, it's hard.
I'm really rooting for you, JFL, and thanks for the info and for keeping us posted on your situation.
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JDK, I was just about to send a post with the exact same questions that sandilee asked! How are you able to listen to the conference? Are you going to view write-ups or summaries, etc? My onc seems to thinks that the results discussed in the ASCO conference may help us in getting the Falsodex/Ibrance vs. Femara/Ibrance approved.
Sandilee, the article you posted was very good and really got me thinking, thinking, thinking, and researching more! I was on Medrol for another medical prob. I have and when on a corticosteriod my neutrophils went way up. Now I understand why and the connection between my "bad immune system" and cancer growth. There is so much to learn.
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Sandilee and Vivian, below is the info about the Pfizer conference call, as well as a link to Pfizer's website where the info is posted. You can listen by phone and can also follow the slides they present on their website. This is a securities law requirement for Pfizer as a publicly traded company to disclose material news to shareholders. This call will discuss all their cancer drugs, not just breast cancer or Ibrance. However, since Ibrance is one of the key money makers they are betting on for the near future, I suspect it will be one of the highlights of the call. There will also be time spent talking about the financial impact of the drugs in the pipeline on Pfizer's revenue and earnings (which is what the analysts who follow the stock want to know), which may not be of interest to everyone and could be overly technical. I plan to have the call playing in the background and will then tune in when Ibrance or other breast cancer drugs are discussed.
http://www.pfizer.com/news/press-release/press-rel...
Pfizer Invites Public to View and Listen to Webcast of June 2 Conference Call with Analysts to Review Oncology Business and ASCO Data Presentations
Tuesday, May 19, 2015 - 10:00amEDT
Pfizer Inc. invites investors and the general public to view and listen to a webcast of a conference call with investment analysts on Tuesday, June 2, 2015 at 4:30 p.m. EDT. The purpose of the call is to provide an update on Pfizer's oncology business and to review Pfizer's ASCO data presentations.
To view and listen to the webcast, visit our web site at www.pfizer.com and click on the "Pfizer Analyst and Investor Call to Review Oncology Business and ASCO Data Presentations" link in the For Investors section located on the lower right-hand corner of that page. Information on accessing and pre-registering for the webcast will be available at www.pfizer.com beginning today.
You can also listen to the conference call by dialing either (844) 246-7558 in the United States and Canada or (303) 835-4213 outside of the United States and Canada. The password is "ASCO".
Visitors to www.pfizer.com will be able to view and listen to an archived copy of the webcast of the conference call.
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Thanks JFL! I will be 'a listenin' !
Btw, I did not qualify for the Lilly/Falsodex study after all my angst, and the Case Manager Nurse did not know why because she "lost the email". Agggggh! It may just be job for her, but it is a life to me. I can find out from the doc, but still I want to know. After talking with you guys and doing alot of thinking I had decided the study was not for me, but that is not the point.
Anyway, the Ibrance is available for me to pickup Tues (a 2 hr drive away]. $80/month with my ins. and $98,600 is no insurance (thank G`d)!. Why so much?
Take care to all you wonderful women out there!
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Vivian, I'm glad you'll be able to start the Ibrance. Are you sure that's not 9,860.00? I think my information stated it was between 9 and 10 thousand a month. (I'm not paying that, fortunately.)
Vivian, don't forget to go to Pfizer's website and see if you can get their $10 per month co-pay card. It would save you $70 a month! And are you sure there is no way that the specialty pharmacy can mail your drug to your home?
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Uh, yeah! I added too many 0s. Make that $9800! I will check on the card. My ins does not allow for the specialty pharmacy mail in to my home. But, I can deal with that.
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Hi all, wow this thread has been busy! Thank you so much for the info on the conference, I will definetly be listening☎️☎️☎️.
This weekend has been wonderful. DIL and DS are here and we had my DILs baby shower. Happily beyond belief, I was there, well, and able to enjoy every fabulous moment. Had it at a country club so there was minimal muss and fuss by me. They did all the cooking, cleaning up and serving. I know it was a splurge, but worth every dime in terms of health.
Sandilee, I know how frustrating it is to wait to restart! I have done it also, but as my RN told me while I was bitterly complaining: what good is a dead patient taking Ibrance? In her callous way, she is correct, try to stay calm and take your supplements.
To all dealing with TMs: UGH! Mine have been up and down like the Ibrance roller coaster we are on. Hold on to your hats, hopefully it will be a long ride.
That's all for now....Enjoy your BBQs and swimming pools and whatever wonderful things life has to offer. Myra.
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Hi everyone, hope you all had a nice weekend.
I am checking in to see if anyone has had nausea at night (early morning) on the Ibrance/letrozole combo - I don't think it's connected to the Ibrance because it feels like reflux, just checking to make sure, since I've gotten sick 3 or 4 times on the combo?
I have had very bad reflux/heartburn ever since my first radiation several years ago and was on Prilosec but stopped it with the Ibrance (now taking Zantac at night, and tums). I got sick on 5-21 around 4 in the morning, and again early this morning (5-26) at 4 a.m. Don't want to gross people out, but on 5-21 I was sort of alarmed since it was bright red and looked like blood (however, I had watermelon the night before, and the Ibrance pill is red, so maybe those 2 things contributed to the redness, but it really was bright red (blood color), so it scared me since I never had that before). The nurse said she thinks it is unrelated to the cancer (maybe bleeding ulcer?) and to go to the emergency room if it happened again. This morning at 4 a.m. I got sick again, but no red, thank God, so no emergency room. I took the Ibrance later in the afternoon yesterday (usually take it around noon). I did have a cup of tea last night which I usually avoid, so maybe that aggravated things.
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Holly, so very sorry you're experiencing this! It must be difficult, too, to try to eat in such a way as to not get heartburn, and then to try to fit your meds in with all that. I can imagine how alarming your symptoms must be.
I haven't had any heartburn or other problems when I took the combo, or Letrozole alone, except the occasional headache. I hope this can pass soon for you. It's unfortunate that you can't take your usual for heartburn, as the Zantac doesn't seem to be working too well for you. Have you explored causes unrelated to cancer with another specialist? It's a nuisance because we are in the doc's office so much already, but it might give you some relief if they could find the cause, or at least prescribe something that works more consistently that is also suitable to use with the Ibrance.
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Thanks, Sandilee, I figured it was not the Ibrance but since nausea is listed as a possible SE, I thought I'd see if anyone else experienced it. I have not had the headaches except once or twice (probably unrelated for me, but yours does sound like a SE so I hope you are also getting relief). People react so differently, it is great to have this sharing of info (thank you again Romansma for starting this!)
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Holly I did have very slight nauseau when I took the Ibrance in the morning. So I started taking with dinner and have not really had any problems since. Also I have not had any acid reflux since on Ibrance/Femara. Strange but I did have on my prior treatment, but that seems to have stopped. When I first started on Ibrance I had some slight headaches, but haven't had since the second cycle.
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Holly, hope you are feeling a little better. Are you taking the Ibrance with a full meal?
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Holly. Sorry about the nausea. Have some mild nausea occasionally. As Hope said, I take it after dinner on a full meal. Myra
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Thanks everyone, for the feedback - the timing of the pills is something to think about. I have been having them with a sandwich at lunch since dinnertime is crazy in our house with everyone running to and from sports, not sure if having it at dinner would help since I'm trying to eat light later in the day because I get the reflux worst at night, and the worst of it has been at 4 in the morning (but only sometimes).
Maybe I'll try switching the pill taking to dinnertime next cycle and see what happens. Trying to be more conscious of diet - eating smaller portions, avoiding fried things, avoid tea (hard since I'm a tea addict), avoiding acidy foods like tomato and sauce, and am thinking of cutting down on soda water (I drink it all the time, am wondering if the carbonation is contributing to it). No fun cutting out foods, but on the bright side, maybe I'll lose a few pounds!
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Holly, I've been having what I would call irritation in my esophagus,on Ibrance where I never had reflux or much indigestion before (except during chemo, but that's not surprising). It comes and goes and doesn't seem to relate to the pill timing. I even had it the first few days of my off week. It's hand in hand with increased nose and tongue irritation and sort of a cough when I breathe deep so I think it's just an Ibrance cell turnover thing.
For me it's annoying, but I can imagine it would be much worse when you already have reflux issues. Hope you find a way around it soon. Hang in there
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Thanks Roses, that makes sense that it could be the Ibrance irritation making the reflux worse (I don't have the irritation on the tongue or nose, but I do have a slight cough which I guess could either be from the Ibrance or the lung mets) - Like your irritation, it does come and go, so I'm hoping I'll get a break from it tonight.
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Holly, my reflux/irritation in my esophagus is very much like what Roses described. Started to be really noticeable during my off week between rounds 2 and 3 and at the beginning of round 3. I did not have it before so I'm pretty sure it's either Ibrance or letrozole related? Annoying but so far manageable.
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Holly, I'd just make sure, whatever meal you take it with, that it is substantial. At least 400 calories. A small sandwich may not be enough to keep the nausea away. Nausea was a big issue in the trials until they changed the dosing to be taken with a meal. I chose dinner time because it's consistent at our house AND if I start feeling any nausea, hopefully, I'll sleep through it! I have felt nausea a handful of times and when it has happened, I ate a really small dinner, or I waited too long after dinner to take the Ibrance.
Hope everyone is feeling well. My energy levels are not improving. My pain levels flared on my week off Ibrance again and it continues now. Starting week 2. Confusing. I guess I'll know soon enough if anything is working. In the mean time, trying hard to stay a little active and eat right. I slept 10 hrs straight last night. Doesn't usually happen because I wake up in pain way before then. I think the infrared sauna yesterday helps to make the pain meds work better. I think it has something to do with improved circulation. I read somewhere that using the infrared sauna on chemo days can have that effect too. Still experimenting with it to see if it helps.
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Thanks for that input, Kaydeesmile and Romansma, I am keeping it all in mind and will have to experiment and see what works. Actually didn't have it last night, so that was a relief. A friend just told me bisphosphonate drugs can cause ulcers ( Zometa is a bisphosphonate drug and I have been on it for a year). So it could be many or all of these things combined.
Romansma, I hope the infrared sauna will give you some relief soon. Praying for everyone, and thank you so much for all your great advice!
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Hi Ladies,
I started Ibrance on February 15 and have had TERRIBLE reflux. I just started on omeprazole. I also found out that it hasn't been effective for me. My tumor marker went from 120--216 in a month, so I am switching to Halaven. Good luck to you all with Ibrance.
Liz
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Sorry to hear that, Liz. Had you failed Femara previously? Hope you have good luck with Halevine.
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Hello - new to the board. Diagnosed at age 25 in 2001 and mets to bones and lungs in November 2014. Just started Ibrance (added to Femara) last week. So far only side effect seems to be headache. Was so grateful to find this board! Love, prayers and positive vibes to you all!
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Liz so sorry that the Ibrance didn't work for you. I know firsthand how disappointing it is to fail on a drug that holds so much promise. I'm also concerned regarding the Femara. I have taken it in the past and was NED for five years. But of course I'm concerned now that since I've had Femara in the past, the combo won't work as well. But I will just have to be patient and see. Just curious, had you discussed with your onc the possibility of combining the Ibrance with Faslodex? My onc had indicated that would be a possibility
Good luck on Halaven. It worked for me for over a year. I felt great on Halaven, but I caution on to stay on top of the neuropathy. I made the mistake of not telling my onc until the neuropathy got so bad I could barely walk. That was six months into it. He then reduced the dose and gave it every two weeks. I am still annoyed with myself that I didn't mention that sooner.
Praying that you do well on Halaven.
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Zimmerwoman, welcome!
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Sorry it did not work out for you Liz. I pick up mine tomorrow (With the Pfizer card!). Good luck with Halavan. Is that a Her+ drug?
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Hi all,
Just a word of caution about making sure to stay hydrated on this drug. As I was finishing up the last few days of cycle 4, I got a little dehydrated working outside and had a tailspin. I literally felt like I hit a wall. I could only lie in bed ... I couldn't even focus on TV. Trial nurse agreed with me to skip the last two doses and I bounced back.
For the newbies, I have always taken it right after dinner with no problems, only some very slight nausea in the beginning that has disappeared. Blood work tomorrow and on to cycle 5!
Good luck to everybody!
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Well, shoot, I have to delay cycle three because of mouth sores. Onc says I have to wait until they are completely healed, then resume on a reduced dose. I was too cavalier and didn't pay attention to taking care of my mouth. Gosh, I love potato chips.
My recent scan and TMs were good.
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Hello and Welcome, Zimmerwoman.
3Holly, regarding your question about Ibrance and nausea, I had diarrhea and vomiting my first night on Ibrance and a tummy ache for a couple days after, but have been ok since then. It seemed like my body took a few days to adapt. I take it with breakfast and try to avoid anything questionable like high-fat restaurant food. You probably know about sleeping on a foam wedge for reflux.
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welcome Zimmerwoman. Good luck with Ibrance. Started cycle 4 tonite. Lenn, can't believe you said that about hydration. I had a very similar experience at the end of last cycle. They gave me the Xgeva shot when my counts were down. I got out of the car and reached for the door knob and my knees were about to buckle and I was shaking. Did not feel better til I drank enough water. Flushing out these meds is paramount!
Shetland Pony, sorry about the mouth sores, but good news on scans and markers.
Have a good nite all...Myra.
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Hi. I'm new to the board, but I feel like I know you all from reading all of your posts back from the beginning one from Romansma.
I was diagnosed stage 4 to bone in from the get go in 2011. Had an amazing run on Faslodex and exemestane. 3 1/2 years NED. Was hoping for longer but that was not to be.Just started Ibrance with Letrazole one week ago. I'm very tired. I dont like being tired. I've got things to do, ya know? Anyway, blue shield denied me so we are appealing. And apparently we don't qualify for any Pfizer rebates because we make too much money. Well ok, but $ 120-150,000 a year for one medication is a lot, even for us. So, fingers crossed on the appeal.
Anywho, here I am. Thanks for all of the great insight. Hopefully I will be able to add as we go.
Stefanie
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Welcome, newbies!
Stefajoy, you are the only other person I have heard of that was given Faslodex and Aromasin as first line therapy. I hope my run is as long as yours! Are all of the Pfizer programs income-based? Good luck with your appeal. I am going through that whole drama myself.
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Pfizer didn't even ask me income as I remember. Myra.
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Myra and Lenn, I will heed your warning about staying hydrated. Thank you!
Hello, Stefajoy!
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I did the standard cytoxin taxotere drip for 18 weeks, bilateral mast, radiation, then I was put on faslodex and exemestane. Is that still first line?
I will ask my husband about Pfizer. They asked him a bunch of questions and the last one was his income, followed by...oh, you don't qualify. But it is worth checking again. I suppose they aren't asking for tax returns so I guess we could lie.
Did I say I was tired? Ugh.
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Ok. I asked hubby. He said the co pay card is only valid if your insurance approved it and pays some. Then Pfizer drops the co pay down for you.
So far, we have a flat out denial.
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Do you know why insurance is denying? Doesn't make sense. Most of us are not on this combo as a first line treatment and most of us have been approved with insurance. I'd ask more questions of your Drs office. I'm thinking they haven't given the correct information to get you approved. Good luck, I have confidence it will work out for you.
Hydration, yes, water and lots of it is key to helping your body keep manufacturing the blood cells it needs. Drink more than usual. Headaches, low energy, and to a certain point, low counts can be eased with more hydration. I work hard at it daily. Sometimes we get busy though and just one day of not drinking enough can cause you to feel awful.
I felt better today after sleeping for 10 hours straight. I think I'm not sleeping as well because pain is keeping me awake or waking me early. Need to get a handle on it.
😴
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Stefajoy, I second Romansma about checking to see why the insurance was denied. The approval process should start with your onc's office, they should submit the forms to the specialty pharmacy approved by your insurance. They would be told by the pharmacy why it wasn't approved. In my case, the form asked my diagnosis, and because I was Stage I at original diagnosis, that's what was the office wrote as that's what they consider "official diagnosis", and then my onc followed up with details about mets in an attached sheet. They just saw "Stage 1" and it came back "Not appropriate." As soon as it was explained that I had mets, it went through quickly.
Good luck.
Thanks for reminding me to drink a lot, Romansma. Tomorrow I will get my blood checked to see if I can re-start the Ibrance. Wish me luck, as it's been three weeks and two "failed" blood tests since my last Ibrance pill. I have felt well the whole time, but my neutrophils haven't cooperated.
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I started ibrance in March . I have to receive neupogen injections for my WBCs .
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The reason for the denial they said was that it wasn't a first line treatment, and that's what the FDA approved, which doesn't make a lot of sense since most of you are not first line either. I'll keep you posted on the appeal.
I'm a camel. My body doesn't tell me I'm thirsty. And I dislike drinking water, for the most part. I need constant reminders to drink, and I do believe it is the culprit of many of my health problems
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yes I'm on ibrance and femara. Starting my 4th bottle
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Stefajoy,
Try alkaline water. It never quenches my thirst. as a matter of fact it makes me thristy! and it is supposed to help your immune system.
p.s. I am starting this treatment the same time as you!
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Liz, sorry you didn't have luck with the Ibrance, I hope the next drug works for you. Hopefully the prilosec will help with the reflex - it did work well for me - it releases for 24 hours so it's always working.
Good luck tomorrow, Sandilee - I hope the counts are up for you so you can get going again.
August15, how often do you get the neupogen?
I agree with everyone that hydrating on all these meds is critical, especially in this humid weather. Had a similar experience doing yard work last year on a really hot day, got really sick and wiped out from dehydration. I also found that hydration can help with nueropathy, and it makes the blood draw easier, so there are many reasons to hydrate. I drink soda water because I find it hard to drink a lot of plain water - however, not sure if carbonation is an issue with the reflex, will ask the doc.
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Ibrance is expensive so insurance companies will find whatever reason they can to deny it. Funny, it you think about it, many of the medicines we take are "off label" and not prescribed for the FDA approved use, although they are never denied -- for example, people taking effexor, lexapro and the like for hot flashes; occasionally, ativan is prescribed for chemo nausea. Doctors are free to prescribe off label in their professional discretion. It is only denied when the drug is expensive.
Vivian, where do you find alkaline water and what exactly makes it alkaline? I have never heard of it but would imagine it one's boosts immune system and has other health benefits like you said, since the whole acid/alkaline imbalance seems to play into a lot of "western medicine" health problems.
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Sandilee, good luck today!!!! Myra
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Sandilee good luck today with your blood draw.
Definitely agree about the water and hydration. I was told not to drink carbonated water as the PH is too low. I prefer to drink the water at close to room temperature and find I can usually drink more than if it is cold. Also take a supplement ChlorOxygen which helps build red blood cells. You have to drink a full glass of water with that. So I'm being forced to drink more and I do feel better when I do.
Holly I get Nuepogen from time to time. I've discussed with onc and also called Pfizer regarding Nuepogen. After getting the run around at Pfizer I was finally able to speak with someone and they advised that there is nothing in the data saying that you can't take with Ibrance/Femara. I think some oncs are being overly cautious. That being said, I am able to keep my counts up most times with various supplements and my whites have not been critically low. When I do get the Neupogen it's always between cycles and haven't taken after every cycle. Last time it was two injections starting two days after my last cycle.
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Good to know about the Neupogen, pearlady. Thank you. I may ask about it. I imagine his problem with it is that the effect is only temporary, and when on a three week regimen, my counts would no doubt drop again within a few days without another dose. My white counts were ok with the exception of the neutrophils. Hopefully they have come back sufficiently on their own by today.
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Stefajoy, that's interesting (and frustrating) about why they denied it. Most of us here are not first line treatment and I, for one, didn't have a problem getting approved. Good luck on the appeal.
Sandilee, hoping your counts are back up so you can start another round!
I think it's interesting how some Oncs are using Neupegen and others are saying it's not indicated. I hang at .6-.9 ANC even after a week off and no Neupegen. I wish I knew why. Guess I'm just curious why you'd use it with a chemo that got you that low and not Ibrance.
I'll be taking an extended break after this cycle to go on vacation. We will be taking a cruise to Alaska and I don't want to be ultra compromised on a cruise ship. I finish about 10 days before we leave and we will be gone 8 days, so I'm planning about a 3 week break. Of course if tumor markers are still rising with my next blood draw, I may be on a permanent break from Ibrance. Hope not. Anyway, I'm interested to see how well my counts recover during that time. They haven't budged much at all during the 7 day breaks between cycles.
Go drink some water everyone!
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Sandilee I usually get my counts checked right after and then half way through the cycle. I think my onc was concerned starting when the counts were so low. I think that the supplements do help during the three week cycle, since the counts haven't been low until the last few days.
Romansma hope that you have a wonderful cruise, that your counts recover and that your tumor markers fall, or at least stay stable. Not necessarily in that order, however.
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Romansma, I've been on that cruise with my family. Out of Vancouver? The Inside passage. It's AMAZING and beautiful. You will love it. Have fun!
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Yea! My neutrophils have returned! I'll be starting the 100mgs as soon as CVS can get it to me. All of my counts were up and nuetrophils were in a healthy place.
Romansma- I think that my onc isn't keen on using an artificial neutrophil booster with this med in my case because something like Neupogen only lasts four or five days, and then they would go right back down. He would prefer to find a dose and a schedule that works for me long term by monitoring my counts and adjusting the dose with the hope of finding a schedule that will work without having to boost my ANC with another drug or worry about infection.
I do have to go in in two weeks for a CBC, just to see how things are going on the 100mgs. They want to see how my body reacts over time- more information. If the 100 keeps me in range, that would be great.
This drug is still "experimental" as far as the doctors are concerned and may need a little bit of juggling to find what works best for each patient. I figure if my doc is willing to go to the trouble to work this out, I'm good with that. Even if I have to wait an extra week to restart each time, if it's working and it keeps me stable (a big, unknown at this point) then great.
The fact that I can stay on the Letrozole without any side effects ( a few weird dreams, occasional headache) throughout is a help. I've never taken this drug, and it's one he might have prescribed at this time if Ibrance never existed. So in a way, whatever boost Ibrance gives is icing. That may also influence what is and is not worth the risk in my case.
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Sandilee, I feel the same way about having to delay then reduce the dose (because of mouth sores). As long as I'm still taking letrozole, I am doing something. It feels weird to have these unused 125 mg pills that cost $319 apiece.
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Doesn't it though? I half expected the pharmacy to ask for them back. They couldn't resell them, of course, so why.
My NP suggested keeping them on hand. It's possible at some future date they might up the dose.
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Hooray Sandilee! I am on 100mg and so far seem to be doing ok. Myra.
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That's great to hear, Myra. Have you had more than one cycle with the reduced dose? And your ANC was ok to restart?
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yes, second one and everything recovered within 7 days! Myra
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That's very encouraging, Myra, thanks.
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Hi friends,
Just wanted to check in. I had my onc appt on Tuesday after my first round of Ibrance/Femara. I did end up getting a Neulasta shot because my WBCs were low. It was either that or lower my dosage but they meds were already mailed to me so we went with the shot. Just a side note, I've been so loopy that last night I accidentally threw the $12,000 pills in the trash without realizing it. Thank God I had a gut feeling when I couldn't find them to check the trash! What a looney tunes!
Anyway, my oncologist has about 11 other ladies on the same protocol. One of them had been experiening increasing TMs so they decided to get a PET/CT scan. Guess what? Totally clear scan! Soo...he's telling me to not put too much emphais on the markers..mine did go up a bit after being on the meds for 2 weeks. I'll probably find out tomorrow the results from Tuesday but if they have increased I'm going to try not to worry about it. I'm sick of worrying!
Love ya ladies!, Christine
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Shetland_Pony,
On mouth sores, I have several from my abbreviated first cycle along with a mild case of thrush due to the suppression of my immune system. My onc ordered a "cocktail" madeup by the pharmacy and I have been able to eat after a week of misery. My platelet count is very low and am waiting to restart with a lower dose. Over the counter products did not work for me and I wish I had this "cocktail" when the sores began.
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Christine, Amen! I hear ya. I am sick of worrying too! My DH and I planned a getaway to NYC because I am so sick of worrying! Thanks for the encouraging words about TMs.
Max Otto, read back to page around 17, there are some supplement recommendations for platelets and blood counts. They have worked wonders for me and others on this site.
Have a great day all, and try to make it worry free.......😝to cancer.....Myra.
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Sandilee, great news on the blood counts, glad you are onto your next round.
Pearlady, thanks for the info on neupogen and carbonated water. You continue to amaze me with all your supplements, etc.. since I have all I can do to keep track of the Ibrance/letrozole and Zantac, never mind the vitamin D and fish oil which I often forget to take.
Interesting info on TM's - My doctor says they don't mean much till there's a pattern, so it's "wait and see."
Romansma and Myra, have fun on your vacations!
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Sandilee great news about your counts! So glad you can push forward.
Have fun on your trips ladies. I might have to plan one too. I think we all could use a worry-break😃
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Great to hear that the increasing TMs were not an issue. I am hoping that happens with me too! Just wish I had decreasing pain, then I'd be a little more hopeful. Oh well, time will tell! Thanks for relaying that, Christine.
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Sandilee, hooray on starting up the Ibrance again!
And Christine, interesting about the TMs and good to know--does anyone know why that's the case Mine were up but it's still early days for me.
I'm having a lot of sort of icy-hot pain in my hip bones which is one of the places i have a lot of mets--no idea if it could be healing, flares, worsening cancer, but I guess time (and eventual scans) will tell. Anyone else have anything like that happen? It comes and goes, doesn't correspond with movement or pressure...very odd
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I started Ibrance yesterday after a month off due to neutropenia. My values rallied to normal and now I will have 100 mg from now on...I am so happy with it. I did not have to answer questions since GEHA picked up the cost. There are lots of questions from the people at the Specialty Pharmacy that overnight delivers the packet of Ibrance. Carolyn
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After 5 years of Faslodex, I will be joining this group. Took my first letrozole tonight, and just have to wait for the Ibrance to be approved and delivered. I was expecting to hear from my Oncologist's PA today, but nothing. Having read all 26 pages of this thread, I am feeling mildly prepared. Have some concerns of course, but since I expected to start Xeloda, this protocol feels like a reprieve.
*susan*
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Rosestoeses, so funny you mentioned that hip pain! I just told my DH the exact same thing. I love this thread.
Susan, welcome. I totally remember you from the short 4 months I was on fasolodex. Glad you are joining us, this is a group of very knowledgeable, caring women. Good luck with the Ibrance.
Myra.
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Myra, sorry you have it too, but glad I'm not alone! I think with a drug this new, there isn't really the institutional knowledge, glad we all have each other to share.
Susan, sorry you're moving on to Ibrance, your long, long Faslodex run was really inspiring to me. There are a lot of us "fanny pack refugees" here, though--hoping this is a winner for us!
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All you gals starting up or again on Ibrance: I've taken 9 doses as of today. Not really any SE yet, but I'm way early on this drug. I pray for positive results for all of us and mild SE!!!
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Welcome, Susan! This new drug requires a lot of "supervision" by our docs that we Fanny Pack sisters aren't used to, but if it works in the long run, of course it's worth it. Like you, I'm glad to have a reprieve from either A/A or chemo. I'm especially glad we have each other to compare notes and give encouragement during this little experiment. We can do this!
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Welcome Susan! Speaking from experience, Ibrance is easier on me than Afinitor or Xeloda, so that is a positive. Jury still out on effectiveness for me, but should know soon.
Roses, pain flares have definitely been an issue for me. They start on my 7 days off and continue through the first week or so of the new cycle. The pain is concentrated in my lower back and hips. I have a large tumor load in those areas, But I am still confused by the pain and the timing of it all because it seems intermittent. I wondered if it could be due to my blood counts working extra hard to recover. I've had consistent low counts and the major pain seems to start when I finish the cycle. I remember being surprised by the lower back pain when I took Neulasta. I ant remember how low my counts were then, but my wbc has been hanging around 1.2-1.3 and ANC around .6. Guessing my body is trying hard to recover during that week. I was told the Neulasta pain would be concentrated in large bones. This may have nothing to do with it, very confusing.
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Sandilee, Yes. It appears that my month will now include three visits to the hospital. My oncologist, Dr. Christina, wants me to get a CBC on day 15, full panel on Day 21, and then she sees me between day 26-28. Since my veins were brutalized getting the MRI contrast in this week, she has ordered a finger stick for the CBC, while the full panel will access the vein. I expect that I will have the PA on speed dial as we manage the first two cycles. Her job is to help me manage the side effects. She is new so I don't have a good relationship with her yet. This will test her since I like clear answers. :-)
*susan*
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Hope, mine started on the week off also. I had an Xgeva shot at that time and I get it on that side of my stomach. I thought it may be that, but now I am not sure. I do know I will not be getting that shot when my counts are low since I almost passed out a day later. Myra.
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Approaching my ten-year anniversary of a Stage IV with bone mets diagnosis. Just took my first dose of IBRANCE with Femara. The dosage pattern of 21 days on and 7 days off is familiar and bittersweet. I'm expecting fatigue and drops in my white count, but wondering about hair loss. I'd love to hear from anyone with first-hand experience with IBRANCE. Thanks very much!!
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Well, I am leaving the Ibrance crowd, I sure am not happy about this . I had a ct yesterday, ONC called later in the day Tumors in liver have grown along with elevated tumor markers . So I wish you all well and hope you get the results we all want.
ONC has said next drug for me is taxotere . I had never heard of it, but he said is along the lines of ibraxane that I had the longest and best results with .
Take care Redroan
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I took my first dose of Ibrance/ Femara yesterday eve! So I
am now officially a "newbie" too!I was really really tired all day and I had to take 3 shortish naps to make it through the day. I hope that is not directly related to the Ibrance and if it ISrelated, I hope the fatigue gets better. No nausea, though! And I did drink lots of water as advised.
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Welcome, Vivian! Glad approval went well and you're on your way.
Redroan, oh, no! What a disappointment. Any time we have progression, it just sucks. It sounds like you be getting something that is likely to really work for you, though. Best of luck, and let us know how it's going.
Take care and hugs to you.
susan- Your onc's office sounds a lot like mine in the way they are watching things so closely. It seems like a lot, doesn't it? I hope that when things settle down we won't need to go in so often. And of course, I hope we're on this long enough that it matters.
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Myra, I didn't have the xgeva this last time, so I don't think the pain flare is anything to do with xgeva for me.
Welcome, Auelx. I don't think anyone here has experienced hair loss on this combo.
Susan, your schedule seems typical for the first 2 cycles. If all goes well, they usually stop checking mid cycle.
Hang in, Vivian. Fatigue is a mainstay of mine. Really not sure it has a lot to do with the drug combo for me. My counts are low, but it could be the pain meds, or even the cancer itself dragging me down. So hard to figure all the different symptoms and what is driving them.
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AuELX and Vivian, glad to have you "official"--welcome and hope it works wonders for you both!
But, Redroan, I'm so sorry it didn't work for you. I think it's especially hard when it's billed as a "wonder drug." I so identify with what Romansma said on another thread about being outside the park gates and not getting in. (((hugs))) to you and hope taxotare does some great work for you.
And, Romansma and Myra, I had my last Xgeva 3 weeks ago so I don't think that's it for me, either. But the timing of it for me is similar to yours Romansma. It was there in week 4 of cycle 1, worse in the off week, and more often now in week 1 of cycle 2. But it's different from the pain I had when I was dxed with the bone mets, closer to the really quick "zinger" pains I used to get on Faslodex that were followed by stable scans--that's why I'm hopeful, but also anxious to see.
Have a great weekend, everyone!
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Auelx, welcome and 10 years is very encouraging. I am just approaching my 1year with mets. Good luck to you and Vivian with Ibrance, I wish you the best.
Redroan, sorry about the progression, we all have to be realistic about these drugs. The media hype is just that media hype. Hopefully the next drug will work best for you.
My onc was making me crazy also with blood work, but now on cycle 3 he is doing it just once at the end now that he knows MY cycle. This month I have gone 21 days off, end of the cycle and then bloodwork. My poor vein thanked him.
That's all for now, Myra.
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Roses, I have not had hip pain on Ibrance - have not had any hip pain since I had radiation to the pelvic area a year ago (hip pain was was bad then, though, couldn't walk normally, so the radiation was very effective), and the hip pain has not come back so far on the Ibrance although sometimes I feel a dull pain in my lower back. However, I have had pain higher up the back and in my ribs that sometimes moves to different places - could be progression from bone or lung mets, but my visit last month showed TM's had gone down for the 1st time in a long while since switching to the Ibrance (may not mean anything till there's a pattern, we'll see what the scans show next time).
I did hear a "crack" the other night in my back, though, along with a sharp pain (was just moving around trying to figure out how to get comfortable sleeping since both sides are hard to sleep on now). I remember a while back I cracked a rib just pulling up a big plant, must be the weakened bones in my case, not the Ibrance, so I can't do anything too strenuous, and I have to rest my back at the end of the day so I can't get done what I once did.
Redroan, I hope you have better luck with the next drug, sounds hopeful since it's similar to the abraxane you had luck with.
Vivian, the low blood counts do make you tired, but also the stress of switching to a new med is exhausting, so hopefully this will improve as you adjust. Good luck to you and to everyone starting out!
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Thanks for the well wishes , I wish you all the best. I will probably still drop by to see how you all are doing.
Redroan
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Best wishes to you, Redroan!
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Hi Ladies, so here I am in Napa at a 3 day music festival. Let me preface this by saying that I am only three weeks out from reconstructive surgery, and I started Ibrance a week and a half ago. My WBC was 2800 (low, but not too low?). My first day here I picked up my small suitcase and pulled something in my lower back on the side. Been in pain ever since. So I manage an act or two at the festival, then I need to go back and lie down. I only made two acts today. Mostly i am in bed. Although a nice bed it is. Also, no dogs or kids. I'm hoping to make it 6 hours at the festival tomorrow. It's a lofty goal. It makes me sad to see all of the happy people singing and dancing, only because it hurts me to move, plus I'm too tired, and.... Oh yeah, I have CANCER. I do believe that once I am completely healed from the surgery, and my body get used to the new meds, and I can start exercising and strengthening a little, I won't feel so decrepit. In the meantime, it feels like I'm never going to feel better, and I'm feeling a bit sorry for myself. Kind of depressing
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Stefajoy, as I pretty much can tell from your photo, you are a young woman with a young family who wants to enjoy life like any other young person with a young family. I understand completely and wish I had a magic wand and could make this dx go away. Cut yourself some slack. 3weeks out from surgery? Give yourself some time to heal emotionally and physically. Do you have someone to talk to who is unbiased? We all need the love and understanding that people with this disease don't get. Try to take it slow and easy and give yourself the love and understanding you need in the timeframe you want. Virtual hugs. Myra.
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Myra, thank you for calling me young. I feel better already. lol.
I'll be 51 next month. Dx'd at 47. In three years I feel like I've aged ten. Got thrown into an early menopause, lost my libido, and lots of aches and pains. I was super fit and healthy before. What a difference a few years make.
My kids are 14 and 17. Almost there.
I know I'm being impatient. I haven't really had anyone to talk to, although I have an appoitment next weekend with a most wonderful therapist who understands BC firsthand(two times survivor, so far). I know she'll help me feel better. In the meantime, reading the posts in this group and the other mets topics has made me feel validated and less alone. My doc always said stay away from forums, they are full of misinformation and a lot of negativity. I think he does not know this forum. This forum is full of real woman, with real experiences, both positive and negative, but always realistic . I find this forum full of love and support. I'm glad I'm here.
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Roses, those "zinger pains" on faslodex....omg. They really freaked me out. I was convinced they were from the injections but my onc seemed to think it could have been inflammation from bone mets pressing down on a nerve. Sorry you felt them too but it's so comforting to hear someone describe the experience so accurately.
Now I too get a pain that started late in round two of the Ibranc. It's a poor man's hip zinger, different from the omnipresent dull ache, but still a little disconcerting.
Welcome AuELX and Vivian. Wishing you the best on this new med.
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Stefajoy, I was dx'd at 43, now just turned 60. My "kids" are 32 & 27 now. I know the thrown into menopause routine, because I was also. My poor DH, libido what is that? I understand your onc's concern about forums because I had stayed away from them for years. There are a lot of them with very negative women. Not here, tons of caring and love. Lots of good info, lots of help with SEs. I too was in great shape prior to this dx. I even taught spinning 2x per week. The media are the ones who put out misinformation. Eat right, exercise, stand on your head and spit wooden nickels ( did I just date myself?). It makes it sound like we are causing our own BC if we do not live the perfect life. OMG, help us if we have a cookie or glass of wine.....ok rant over!
Kaydeesmile and Rosestoeses, what do you mean zinger pain? My hip pain comes and goes right at my waistline.
Enjoy Sunday, mine is errands while I have DH around.....Myra.
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Stefajoy, I hope you can enjoy yourself today. I grew up just outside Napa and still love visiting there. I have a friend at the festival you are at. I've known her for 30 years. She has stage IV BC too. I am seeing her postings on FB. BottleRock, right? She is 49.....still young with a 11 yr old. Just like you (and me)! Go act your age! Enjoy!
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Thank you Pearlady and Romansma,
I took Femara previously for only 4 months before it failed, so I guess I shouldn't be too surprised that I failed Ibrance after 3 months. Freaking out. Thanks for continued prayers and hoping Halaven works for me.
Liz
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Good luck with your next treatment, eshinall!
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Hi All,
I just started cycle 5 and they decided to lower my dose to 100 mg. My counts have been pretty good and my white count has been actually going back up. My Neutrophils are low but that hasn't changed the entire time I have been on this trial so I was surprised when they told me they were lowering it. They are seeing that lowering the dose really helps with the fatigue you get the last few days.Since they are still "fooling" with the dose and trying to figure out what is right.. I have no problem having it lowered. Each month is getting easier to tolerate so hopefully this will alleviate the end of the cycle tiredness.
Welcome to all the new Ibrance users.
Romansma, your cruise sounds great! Have fun.
Drinking my water.....
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Lenn13k, That is very interesting since I am down to my last 3 pills and was exhausted today. Are they lowering the dose for all patients? - I see you are in MA - Are you at Dana Farber (I am, so I wonder if mine will be lowered as well)? I am guessing my neutrophils are down again, will see what they say about the dosage.
Stephajoy, I agree with Myra, it takes time to heal from the surgery, and I think you'll feel better when you do, and you will have more energy. It is also very stressful and tiring switching to a new med, I think things are better once you adjust.
Kaydeesmile and RosesToses, before I had radiation to the pelvis a year ago, my cancer was pinching a nerve and causing sharp pains as well as difficulty walking. So it could be a nerve, those nerve pains are usually sharp. The radiation was an amazing help since I have been free of the hip pain and able to walk fine for a whole year now - (even though I now have a higher up back and rib pain, it doesn't affect my walking).
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Liz, good luck to you. Hope the Havalen works.
Myra, the zingers are VERY sharp, quick, stop me in my tracks pains in my upper thighs. They had gotten pretty frequent for me before the Ibrance. They've been replaced with a different kind of less intense, periodic stabbing pain in the same area. Then there's also the dull ache right around the waistline that never goes completely away but is manageable for me.
Holly, I've discussed the possibility of "spot welding" on a few places in my back with my MO and RO. If the Ibrance fails to get rid of the stabs it'ssomething I'll push for. I think we're in wait and see mode.
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Kaydee, what is spot welding? Hope you get some relief soon.
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Kaydee's description fits the "zingers" I had on Faslodex and what I have now on Ibrance to a "T"!
And on Faslodex I had them in some of my other met spots occasionally, too (skull, ribs, etc.), but so far not in those places on Ibrance. With the Faslodex, it was followed by stable scans and some sclerotic changes, so after that it didn't seem as scary as at first (I was sure it was the cancer spreading before scans showed differently). That's the hope I'm holding on to with Ibrance, as well, but time will tell.
I had rads to my pelvis/femur about a year ago, too--it was amazing how much that helped the pain and so fast! These current pains are different, though, and on both the radiated and non radiated sides. So weird!
Lenn, that's interesting about the lower dose. I'm only in cycle 2, but so far I'm feeling pretty good. I wonder, too, if this is a protocol change or something particular to your situation? Hope it does the trick wiht your fatigue
Liz, praying for you on Halaven, hope if knocks that cancer out of commission!
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Hi! Check out this news release from Friday (5/30/2015) from the ASCO conference:
http://www.pfizer.com/news/press-release/press-rel...
They are talking about Falsodex taken with Ibrance doubling progression-free survival. We need to investigate further. Like, what are the numbers - the actual statistics? and, Will this news expedite the switch from femara to faldodex for those of us that want/need to? Lots of questions. I remember my doc saying that the conference may facilitate changes... Guess she was right!
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JFL,
Just now saw your question asking where I find alkaline water. I get mine at the local health food store around the corner, called "Earth Orgins". They also sell it at Trader Joe's and Whole Foods. The brand I get is called Le Vai. Their tel # is right on the bottle, 407-944-1443. There are other names and brands but my mind is drawing a blank right no (one of it's favorite things to do these days!)
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wow Vivian thx for the great info on ibrance and fasolodex. Will discuss w/MO at next appt. Myra.
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I'd be interested to see if anyone can get insurance to cover Ibrance with Faslodex since it isn't FDA approved in that combo yet.
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Vivian thank you for posting that regarding the Faslodex. My onc had told me early on that if the Ibrance/Femara didn't work he would switch to Ibrance/Faslodex, rather than switch from Ibrance. Hoping that my insurance would approve. I think the good thing for me is that it was tested on Her2+ also, which I am. So far my markers are stable, but I was on Femara for almost 5 years and fear that although it worked previously, it may not work as well now since I've had it before.
Susan welcome. Other than the annoying monitoring of the blood counts, the drug has been fairly easy for me. I don't really have any side effects. I do get a little tired sometimes, but I think that has to do more with my not sleeping so well than the Ibrance. But all in all, I'm able to work full time and carry on my normal life. I have no pain with the Ibrance.
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Vivian, thanks so much for the faslodex/conf. info. I'll be watching closely!
Holly, "spot welding" is when your RO targets a few extremely small areas on your bones to give you pain relief. I'm not sure about the other ladies, but when I had the round of radiation on my breast after the initial diagnosis the field was pretty wide and included the lymph node area under my arm. This time the RO would hone in on a few spots to help with pain in my back/legs. It's amazing how small the field can be.
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Below is a link to the presentation discussed at ASCO this morning and simultaneously published in the New England Journal of Medicine (NEJM). It is the first article on the NEJM home page. Median progression-free survival was 5.4 month longer with Ibrance/Faslodex (9.2 months on Ibrance/Faslodex versus 3.8 months on Faslodex alone). This was a pretreated group so the overall numbers are different than the first line numbers from the Femara study.
Vivian, thanks for the info about the alkaline water!
Hope, Northtexas was able to get Ibrance with Faslodex covered by insurance. I am not aware of anyone else (yet). I am still trying and plan to succeed! I have updated my appeal letter with the stats in the article above.
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JFL,
I was just thinking about about you submitting your appeal! I think the Faslodex/Ibrance combo will take time for insurance companies to allow coverage - at least mine anyway. But, they do need to get your diagnosis and other information straight. That's for sure! If their codes and numbers don't match right they won't go any further. Keep us posted.
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3Holly's - I am at a trial at Dana Farber but , right now I am doing it through MGH. I don't have to be monitored as much anymore , so I moved it closer to home after the first four months of going into DF. It was my MO there that looked into lowering the dose and found that it was being done for fatigue issues. I am supposed to stay on this drug for two years so they want to make sure you can/will stay on it. I only have issues with fatigue the last few days so hoping this moves solves that problem.
Where in MA are you from? I live on the North Shore.
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Lenn, my brother lives in Manchester by the Sea. Myra
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Myra, I am right next door in Essex...
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Lenn13k, That's nice that you have MGH on the north shore since the drive into Dana Farber is not easy, especially with all the extra visits of a trial. I am on the south shore, but my husband grew up on the North Shore and the MGH satellite there has been great for his family. Thanks for that info on the Ibrance, good to know they can lower it if needed, and I hope you continue to do well with it.
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This is the third morning in a row with nausea. Didn't have it before. Something has changed. Ugh.
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Hope, we are on the same path. Sunday severe, yesterday milder, today somewhat better. Waist pain waking me at night when I turn over. Ugh is right. Myr
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Crum, I don't like the sound of that, Romansma and Myra. Have you guys been eating normally? Myra, it sounds like yours is actually getting better. Might not even be related to the Ibrance.
Get better soon! Romansma- when is your next scheduled doc's visit? Does the nausea go away or does it linger all day?
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Sandilee, mine does seem to be better, but it is first thing in the morning. Sunday, it lasted all day in waves. I did not eat normally Saturday evening, went out with friends and they eat crap and sweets. Could be related, but the waist and hip pain has been there for the last week since I was on my off week. Hopefully it will go away as I go back to taking the Ibrance for the last few days. Oddly, 2 weeks ago I said to my DH, wow, I have forgotten to take my pain pills and then zap here is this weird pain. Myra
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Myra, your pain pattern seems in line with what I've experienced the last two cycles. It starts on week off and continues into the first week of the new cycle. Increased pain in hips, lower back, even down my legs.
The nausea, though. I ate pizza Saturday, which I hardly ever do because I don't eat dairy, typically. But, it's Tuesday! The nausea seems to taper as the day progresses, but it does come in waves here and there.
I have a dr appt next Wed with labs. Need to find my Ativan, always helps with Nausea. Shoot, I was feeling a little more energetic for a couple days and now this.
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OK this is funny, I had pizza too Saturday nite
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Hang on, you guys. I hope this is just a temporary bump in the road.
That is funny, Myra. Maybe pizza is contraindicated.
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Ok, that's funny! Cept, I can't find my Ativan! I'm chewing gum to help. Ate some dry toast. Still nauseated! I hate feeling nauseated. I deal with other SEs so much better.
K, everyone, no pizza and Ibrance!
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So funny about the pizza ladies. I am thankful this doesn't happen to me since I love thin crust pizza. Great pizza in NYC. Real ginger ale helps with nausea as does ginger tea or crystalized ginger.
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Sorry to hear about the nausea, ladies, I wonder if the tomato sauce (acid) on the pizza had anything to do with it (my nausea was also in the morning, about 4 a.m., but was definitely connected to the indigestion/acid reflux which may have gotten worse from the meds).
I agree that nausea is "the pitts" - will never forget having 9 mos of it during my 1st pregnancy (actually lost weight) - it was continuous, then, but on the Ibrance luckily the nausea is not continuous (not sure if just random or diet related - I'm trying to figure out what to avoid, trial and error, but maybe it's not even the diet at all, could just be the meds).
Hope you feel better soon!
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I will tolerate SEs, but I draw the line at pizza!!! Myra
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Do you drink coffee? One thing I've been doing is having toast or bread in the morning before my coffee (should give up the coffee but can't), and the acid seems much better lately, so maybe that's working. I have not given up pizza - still have it on fridays, but not a lot of it. I don't think it's the just the pizza, could be a combo of things with the pizza (did you have Coke or root beer or tea or anything citrus with it? I have to avoid those things). Nausea is listed as a side effect of the Ibrance, so maybe it's unrelated to what you are eating, but In my case I think there may be a link with the stomach acid being there when there's an empty stomach, in the morning.
I'm eating lighter at dinner, and having the bread before my coffee - don't want to jinx myself, but haven't had the morning nausea in almost a week (before that, I had it on 5-21 and 5-25, both times around 4 or 4:30 in the morning). Your nauseau may be unrelated to acid, but it's interesting that it is occurring in the morning also, so could be, with stomach acid in an empty stomach. I am going to ask about it at my next appointment, will let you know if I learn anything new. I know addivan helps with nausea, but it knocks me out (I used to take just 1/2 the pill for a very short time, just after my chemos - not taking it at all now since the nausea is not continuous, just sporadic).
I Hope your nausea disappears soon - Hope, did the toast help at all?
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Hello ladies, just checking in. I had my mid cycle blood work of my first round and numbers were within normal limits except WBC which was 2.6, but not too bad. I was wondering from those who have been on this a few months if these numbers tend to fluctuate a lot from cycle to cycle or if they tend to hover around the same, especially when they are at the low end. My Onc wants me to have another blood test the end of this week (3 week mark) to see if they have dropped any more to see how I'm doing.
Hope and Myra - feel better. Nausea sucks. It could just be a simple virus that may just take longer to kick because of our compromised immune systems.
For those moving on to other treatments, good look and I hope the next one is THE one.
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JJski62, The counts tend to get low toward the end of the cycle, and some have to take a break to wait for the counts to come up, but I've heard that whatever happens in the 1st few months (whichever counts are affected) is usually the way it will generally go for the duration (for each person the pattern may be different though). Good Luck!
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Hello ladies. I am based in uk where I branch is not yet available . I understand it is likely to be so next year. I have just come off letrozole as it stopped working after 10 months. I am now on weekly taxol. I was wondering if you can still have access to ibrance and letrozole after having chemo and letrozole on its own failing or if it is just a first line treatment which would rule me out . Thank you x
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Torridon, I think you could get Ibrance if your doctor recommends it for you - many of us failed the letrozole alone and have also had the chemo previously. I hope it becomes available for you soon.
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First Time for a quick question-- Myra, you said you taught spinning 2x week. What is spinning? Is it like making your own yarn or something?
About pain and other SEs: Okay, when I was on my study that just recently got stopped (Veliparib with the oral chemo, Temodar) my tumor spots would ache and burn terribly while I was taking the capsules - I took them 7 days a week, and the pain started around day 3 and lasted until about 2-3 days after that week. Those pains were not the "zingers" you guys are talking about, see my *foot note below. but not a "poor man's zinger" either - Loved that Kaydee! Just had to add that in there, Lol! -- Anyway, after that, I would go back to the constant dull relentless ache that I'm sure we all can relate too.
With the Ibrance I am also having pelvic, low back,and top part of thigh pain (not waist, and not my other tumor areas like sternum and ribs) and I'm trying to figure out if it my tumors getting attacked or is it something else (I have lots of tumors in the regions listed above) Since so many people complain of pain there, too, I thought maybe it is related to our bone marrow with all the activity going on in the bone marrow right now where white cells are made or repressed from making. That theory has holes and does not address the waist pain that Myra and Kaydee voiced, What else could it be? Maybe something hormonal? I don't know. I had forgotten (probably subconsciously on purpose!) that Femera caused god awful hotflashes and they're baaasack......!
Other side effects I am having. Anything you want to ad?
- Tired, run down feeling
- Just mild nausea with light heartburn (twice only) so far. - Hooray!
- Giant poops that border on diarrhea, smelly gas - Weird as I have been dealing with constipation for so long. Aren't you glad this is not a face-to-face discussion, haha!
- Flushed face (Its got to be the Femara)
- A big wart on the end of my nose........only kidding
*On zingers: I think the zingers are coming from big nerves maybe branching from the spine. This is what Wikipedia (the most trusted news source on plant earth! haha...!) had to say: "Bone tissue is innervated by both myelinated ... and unmyelinated ...sensory neurons. In combination, they can provide an initial burst of pain, (zingers?) initiated by the faster myelinated fibers, followed by a slower and longer lasting dull pain initiated by unmyelinated fibers. Nociceptors responsible for bone pain can be activated via several mechanisms including deterioration of surrounding tissue, bone destruction and physical stress which shears the bone, vascular, muscle, and nervous tissue."
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Interesting about the zingers, Vivian, I wish I knew what it meant here! I'm just in the middle of cycle 2 so no scans yet--the wait is terrible, isn't it?
Has anyone who failed Letrozole alone had scans yet and has the Letrozole/Ibrance combo worked anyway? The news about Faslodex with Ibrance is exciting, but I'm wondering if it would be an option for those of us who already failed Faslodex once.
So sorry about the nausea some of you are having. Hope it goes away quickly, that is one of those "lifestyle" changers and it really stinks.
Also, especially for those of you moving on, have any of you seen this study opening in July: http://www.nytimes.com/aponline/2015/06/01/health/... ? Sounds so interesting and so much potential for opening up new treatment options!
I'm doing pretty well, less of that pain right now but I've caught another cold, ugh! But at least this one, unlike the last, seems to be moving on a bit faster--fingers crossed!
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Vivian, you are so cute! Being you live in Ocala, I am in Ft lauderdale, I thought you would know what spinning is. It is really fast stationary bike riding to music, simulating hills and road races. Very intense workout. Some gyms call it indoor cycling classes.
As to pain, mine is definetly in my lt hip. It starts just above the waistline, radiates down my buttocks, and sometimes around to the front of the leg. It is definetly worse when I sit too long. It started on my week off and has continued into this first week. It seems to be attacking where I have known mets, but I also have them down my spine which just gets "numb" sometimes.
I also have flushed face quite often.
Roses, I too have what seems to be a constant cold. My nose runs constantly, and sometimes an added sore throat, but it is not a cold. Perhaps you are dealing with that.
OK, enough! I had a long talk with my therapist yesterday, and Let's Get Organized is going to move forward. I am in the midst of writing a mission statement and determining who I should locally contact to begin a movement. Check that thread and give any suggestions you may have.
Hugs to all, take those pain meds and tell those stupid diseases to go away! Myra.
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hi everybody! I just got my Ibrance. I will be starting after I get my initial blood work, hopefully next week.
I work full time (37hours a week) at JCPenney as a cashier. Do you think I will be able to continue to work
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can I ask, have many of you taking Ibrance had success with this even after letrozole failed? Thank you x
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HI Raine-Wells and welcome! Good luck with the Ibrance. I am still in my first cycle, and although everybody has varying side effects, I think it is doable. I haven't had any real noticeable side effects, other than the drop in WBC. I think the most important concern you would have is the low white blood counts and working in retail with exposure to a lot of people and dealing with money. Of course, talk to your doctor, but anything you could do to protect against germs would be helpful. I know ladies have suggested wearing white cotton gloves on airplanes to protect against germs. Maybe gloves and lots of hand sanitizer.
Hello to everyone else! Vivian you gave me a good laugh!
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Torridon, My TM's were down for the 1st time in a long time (2nd cycle of Ibrance/letrozole) after failing on letrozole alone, and failing on faslodex alone. So I am optimistic, but I have not yet had any scans, so too early to say whether it is a success, although I consider it a success just to be free of bad SE's that I would have on other meds. Although it is not a cure since my cancer is in the bones/lung, more quality time is what I hope for on this drug.
The letrozole/Ibrance is also an improvement for me over the Faslodex, since I had itchy bleeding red bumps on my arms and legs on the Faslodex (However, I am wondering if I will go on the faslodex with ibrance once the letrozole with ibrance stops working - guess it depends on the results of these trials).
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3Holly - Congratulations! I was just talking to my MO and she indicated that Ibrance will be used with the Faslodex if/when we need to move on to another treatment (based on this latest study), so I think if Ibrance is tolerated, it's going to be used in combination with all these other hormonal therapies. That's the direction the drug is going. So hopefully we get the benefit of these drugs until the next new one comes along.
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Torridon- It's hard for most of us to answer your question because the drug is so new to us, too.
"Success" for most of us would mean stability, at least, and reduction in tumor markers. But most of us haven't been scanned and markers are not making dramatic changes yet. I think the majority are waiting for 3 cycles before scanning or looking at tumor markers as evidence of the drug working. Keep watching, though, as the time is approaching soon when we should start seeing some results.
I'm kind of surprised at how different I'm feeling on the 100mgs as opposed to the 125 I started out on. I have to say I have no side effects whatsoever (except for blood counts, which haven't been assessed on the 100 yet).
The itchiness and tiredness I experienced on the 125 are gone. No headaches, either (although I still think that's a Letrozole SE.) Maybe my body has just adjusted, idk. I do hope this doesn't mean it's not doing anything, though.
Funny how we always look at the negative of whatever positive we might be handed. lol.
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My ONC went to ASCO last week and is giving a seminar for patients at the City of Hope this weekend. Its called Patient Research Update, and is meant to discuss new areas of innovative research in breast cancer treatment. I am SURE ibrance w/letrozole and ibrance w/ faslodex will be a big topic of discussion. I will report back next week with any interesting information. It may be stuff we already know or have surmised, but he is very good at explaining the science behind the medications, as well as the study results. I'll take notes.
Any So. Cal. peeps interested in going, its Sunday June 7 from 3:00-5:00 at City of Hope in Duarte. Email philanthropy@coh.org to RSVP. I'm guessing you dont HAVE to be a COH patient.
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Is anyone getting Ibrance covered by their insurance for 2nd or 3rd line treatment? I need a treatment change. Both my oncologist and I want to go with Ibrance. Hormonals have worked so well for me in the past, but I'm getting to the end of the line with them. The cancer center is running it all through United healthcare, but I have a hard time believing they will approe it. Should know in a few weeks.
Marie
St Louis, MO
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I am still waiting for approval, four full business days after my oncologist meeting. Not sure if this would be considered the second or third line for me. I did aromasin as part of my Stage II treatment, and then we added the Faslodex. Dropped the aromasin about two years into the Faslodex since the side effects were too much.
The waiting is starting to annoy me. Is this a normal amount of time in other people's experience?
*susan*
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Marie many of us are second or third line treatment or even more. I really had no issues getting it approved with my CVS Caremark Insurance. But it did take a week and got me a little nervous.
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Marie, if you read this thread, you will see most of us are second or third line and have spoken about it.comsiderably.
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I have finished my second round on 100 mg the first round at 125 mg was stopped after 2 weeks do to low white blood counts. I will have blood work on Friday to see if I can start round 3. I really haven't had any side effects I am working full time 40+ hrs a week in a busy office where everyone has been sick a lot, even with low the low counts I didn't get sick I waited for it to hit but never did I figured I would have been quick to get it. I haven't noticed feeling any different when my counts were the lowest.
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I have United Healthcare. From the time my onco submitted it to the insurance until I received it was 3 weeks
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Susan, I got a 21 free follows me on trial from Pfizer through CarePlus. During this time I was denied insurance and have appealed. God knows how long that will take. In the meantime I'm on my third week, so at least I got to start. I'm hoping now the the FDA has approved Ibrance for second line treatment of paired with Faslodex that my ONC will switch me from Letrazole and I'll be able to get approved. If it doesn't happen within two weeks I've got to cough up ten grand. Yikes!
Hey, is anyone out there already on the Ibrance faslodexcombo? Just wondering.
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I don't know what I was trying to say but it wasn't "follows me on". Lol
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Stef,
Has the FDA already approved with Faslodex? I thought the paper was just presented a few days ago. Haven't read about approval. Do you have a link? Maybe that would strengthen my case? Since I just completed 5 years of Faslodex, I don't expect that my oncologist will want to use that combination.
Guess I have to sit tight and wait this one out.
*susan*
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Susan, I have United Healthcare and I was approved within a week. It went thru Optimum RX with the Pfizer co pay card. Make sure your onc filled out the paperwork correctly. I had failed Letrozole and fasolodex on their own. My onc was involved with that trial and the results were promising. Don't know about approval yet though. Good luck, Myra.
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I don't think Faslodex/Ibrance combo has been FDA approved yet. Trial results were just released, but I haven't heard anymore than that.
Nausea has calmed so all you doubters out there....it really could have been that evil pizza!
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Romansma, glad you are feeling better.
A friend told me the trial results were just released and were positive, so hopefully all the insurance companies will now approve it.
I just looked it up - if I'm reading it correctly, it looks like the ibrance with faslodex (fulvestrant) - in the Paloma 3 trial results - more than doubled the progression free survival rate as opposed to using the faslodex alone, for those who failed previous hormonal therapies. Didn't see anything regarding overall survival rate, but more than doubling the progression free time sounds successful,and I hope this means it will now be FDA approved with the Faslodex as well as with the letrozole (and therefore covered by insurance) for those who may want to try the combo after the ibrance/letrozole stops working, and for those who are already on Faslodex or are considering the Faslodex since the combo is now proven more successful than Faslodex alone.
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susan- As Myra mentioned, it's important that your oncologist's office fills out the form carefully and correctly with your ER+status as well as your mets very clearly marked. Mine was rejected at first because of the way the insurance co read the forms. If you are denied, be sure to ask your onc's office why. They are the ones who should be pushing this through. You might call your doc's office and ask how things are going.
The fact that you're not first line shouldn't make any difference. The majority of us here are not first line and we all were approved. Once the form was corrected (they didn't think I had mets at first as it wasn't listed on page 1) it was approved within a day. (CVS Caremark Specialty)
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Romansma- Thank goodness you're feeling better! Maybe you just caught a bug. Being a bit compromised, it wouldn't be hard to imagine. Is this the last round before you take your break for your trip?
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Right,sorry. My bad. FDA has not yet approved Ibrance as a second line therapy, although it looks like 95% of the women on this board have gotten coverage anyway.
As of yet, I am not one of them. BUT I'm still working on it and since everyone else is getting approved, I have high hopes.
Susan, I just completed 3 years of Faslodex with exemestane, which recently failed. I dont think that excludes me from the Ibrance FAslodex comination, as it has shown to be successful where single use of faslodex has failed. Lets hope so.
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http://www.firstwordpharma.com/node/1284218#axzz3c...
The oncologists are already there. The FDA will soon follow.
Insurance companies don't gain much by denying Ibrance when Affinitor is just as expensive.
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Romansma, glad you're feeling better, now stay away from the pizza, ok?
Susan (and others trying to get Ibrance in a slightly off label way like 2nd line or with Faslodex), a lot of states, including Massachusetts have laws mandating insurances cover drugs for cancer that are off label if they meet certain criteria which, in my opinion, these uses do. The MA statutes are here:
https://malegislature.gov/Laws/GeneralLaws/PartI/TitleXXII/Chapter176B/Section4N
https://malegislature.gov/Laws/GeneralLaws/PartI/TitleXXII/Chapter175/Section47k
https://malegislature.gov/Laws/GeneralLaws/PartI/TitleXXII/Chapter175/Section47l
And in other states, try googling [state name] off label drug coverege.
Good luck, everyone trying to get that approval!
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No idea why that last one didn't link, but it's 3 separate links to the three parts of the statutes
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hello,
On the Pfizer appeal, as others have pointed out, make sure everything is correct. I was denied due to income limits and was asked to summit our 2014 income tax returns along with our household expenses. The appeal was successful. Have your onc's office help you if this the case
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Hi ladies,
I saw on another thread a link that was being discussedbut I was particularly interested in the clinical trial drug that this stage 4 lady was using in combination with Femera: ribociclib. It looks like it is similar to Ibrance but not quite. Has anyone heard of it or know anything about it? I was wondering if this could be an alternative to Ibrance if that doesn't work. Here's the link where it's mentioned.
http://blog.dana-farber.org/insight/2015/06/living...
Hope you all are enjoying a good day!
Joanne
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I saw that too, Joanne. I know there are 3 drugs that all are similar. I think Pfizer just beat the other 2 to market. They are all CDK Inhibitors, but may have slightly different make ups. It will be interesting to see if they are possibilities, but my thought process wonders why one CDK would fail and another work. Although, we see that aromatherapy inhibitors have different mechanisms, so I guess it depends on how different these are. We will have to do a littleness research. For anyone knows. Please help I so out.
Sandilee, yes, when I finish this cycle next week, I will take a break until at least the end of the month so that my WBC has a chance to recover a bit for my Alaska vaca. I also suspect it's scan time. I will have completed 4 cycles, and wthl increasing tumor markers and enlarged nodes, it's probably time to see what's going on! Hoping it's not what I suspect and I get knocked off my chair in surprise!
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Very interesting - it's the LEE01 drug according to my friend. I wonder if she went into the LEE trial prior to the FDA approval of Ibrance. I was offered a trial with the LEE01 drug prior to going to the Ibrance, but it was a trial of 3 drugs (more possible side effects with 3 versus 2 drugs).
Good questions, Romansma, regarding whether one CDK inhibitor can work if another fails. I hope your scans go well, and that you have fun on vacation - cruise to Alaska sounds so exciting!
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I see my earlier post says aromatherapy inhibitors. If only! Sometimes I really hate autocorrect. I meant to say aromotase inhibitors!
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Aromatherapy inhibitor? That would describe my nose during hayfever season!
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I think a clothespin would be an aromatherapy inhibitor, too. (I knew it was autocorrect, Romansma, but thanks for the giggle.
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I was wondering if the Ibrance/Femara combo has worked on breast cancer that has never responded to Femara alone? Does anyone know?
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I know the original trial that got Ibrance FDA approved was first line treatment, so that wouldn't help. We'd have to research the ongoing trials to get answers to that question. However, in theory, it might work because it works as a pathway inhibitor. The pathway it is inhibiting is one that makes the tumor resistant to the Femara. But, that's just a theory/guess. I think it's important to remember that Ibrance doesn't do much on its own. It was developed to make existing drugs more effective by inhibiting pathways that are causing drug resistance.
Love the clothespin aromatherapy inhibitor. Too bad treating cancer wasn't as easy as pinching your nose so you can't smell!
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Hello Ibrance users.. I started Ibrance almost three months ago.
2 months on and one month off due to Neutropenia (severe). Now yesterday I had a CT/PET scan at Florida Proton . Today the lead radiologic oncologist went over in detail all the results. His name is Dr. Roi Dagan and he gives me such meticulous explanations that I am so appreciative of his time. Anyway: Ibrance is working...I do not need VERO radiation due to the fact that the small metastasis to the liver is stable or regressing based on the scans.. True, I am now reduced to 100 mg Ibrance but I am thrilled and so happy that I am stable on Ibrance. Thanks Dr. Roi Dagan for such a detailed analysis which has given me new confidence. Carolyn
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That's awesome news Carolyn! Enjoy your weekend!
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Carolyn, that's wonderful news! Great for you and hopeful for the rest of us!
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Carolyn, that is wonderful, I'm so happy for you!
And, honestly, today it was just what I needed to hear--turns out my neutrophils are down around 800, which probably explains the frequent colds and generaly feeling bad and not getting better, so I'm now off Ibrance till they bounce back up and then it will be on the 100mg capsules. It's such a relief to hear that dose and some time off have been good to you!
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I'm also relieved to hear that someone else is feeling off with these low counts. My Neutrophils have often been in the 600-800 range, so I'm looking forward to a little break this month.
Btw.....how's the dreaming? Anyone still having vivid, technicolor dreams on this combo?
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congrats Carolyn. Last nite I had very weird dreams. Don't know if it is meds or stress. My lt side still hurts so I am getting worried. Going to meet Dorothy for brunch "pearl lady" while we are on a long weekend to NYC. Can't wait. Myra.
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I'm 'dreaming' up a new thread where we share these weird, sometimes scary dreams. K, no. Writing them down will preserve them and as it stands now, I've usually forgotten them way before lunchtime!
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Carolyn, That is great news!!!
But this has me wondering if starting at 100mg will get us all to the same place without as many blood count level issues. In line with starting Xeloda on the 7/7 schedule which is becoming common at my hospital. Just random thoughts.
*susan*
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susan, good to hear from you! Any news yet on approval? It seems like you should be getting some kind of news soon!
I think that the 100mg is where a lot of doctors will start this drug after awhile. My own dropped me down after the first cycle and two weeks off. I don't know yet if my counts have improved with the lower dose, but I'll find out next Thursday. I do know that I feel stronger; no nosebleeds, no fatigue. So my reds are probably ok, anyway.
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Carolyn - congratulations on your results!
I just had a CT scan and I'm currently stable, but I had it done as a baseline since I just started Ibrance. I guess it means the Arimidex and subsequentFemara were working on their own. Hopefully the Ibrance will amplify the effects of the Femara. I do have a bone scan next week, so we will see what that says as well. I have to get blood work again tomorrow to see how low my numbers dropped in week 3 of Ibrance. I'm expecting they tanked since that seems to be the norm. I'll keep you posted.
Hope, you reminded me of a vivid dream I had the other night. It involved mice. I won't say more;)
Joanne
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Carolyn, So happy to hear your great news! Myra, I hope you get some relief from your pain and can get some sleep. Have fun in NYC!
Susan and those waiting to hear on approval, I hope you get approval soon. I know how anxious it made me being in limbo - I had to wait over a month to get the doctor's and the insurance approval, but that was early on, and hopefully with the recent positive trial results, and with more and more people starting the drug, the approval process will be quicker. Good Luck!
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I'm not too sure where to post this question, so I'm going to put it here and in the Faslodex thread.
Are there any longtime Faslodex users here who have begun taking Ibrance as well? If so, did you initiate the prospect with your doctors or did they?
Tina
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Hi Tina,
How are you doing? I understand where your question is coming from. I don't think anyone on the board fits your description but they will speak up if so. Why not ask your onc what he thinks?
I hope Faslodex is still beating this beast for you!
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I see my MO next week and I am going to bring up Faslodex. I failed it quickly about a yer and a half ago, but it may be very different with the Ibrance. The trials seem to support this. I'm all for exhausting these avenues before signing up for another harsh chemo that isn't proven to give much OS benefit. There is someone on a different thread just starting Falodex and Ibrance, but not sure she has the Ibrance in her hands yet.....really watching to see if insurance gets on board to this combo before an official FDA approval of the combination.
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Tina,
Based on this week's presentation, I would bring this up with Dr. Oncologist. Perhaps with a copy of the study in hand so he can study it. :-) I only wish that Faslodex hadn't just failed me!
*susan*
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Carolyn, what fantastic news! So glad to hear it and hoping for a flood of similar reports from more people in the thread soon.
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Thanks, Hope, for your response.
So am I right in assuming that every lady in this thread who is on the Ibrance/Femara (aka Letrozole) combo is doing this as a first line treatment for MBC OR Femara(Letrozole) has worked before but stopped working on its own?
Thanks again and hoping everyone is having a good weekend!
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Adnerb -
Hi, no, I don't think it's right to say most of us are first line, with or without having taken Femara. Many of us have had other therapies, and are probably second line (or more). This is my first time with Letrozole. I progressed from Aromasin to stage IV, and then had three and a half stable years with Faslodex. So, this combo is second line for me as a mets patient.
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not at all adnerb..Most of us have failed femsra and in mine (and many others) have failed fasolodex. Please read the thread, it tells all. Myra.
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Like others, not first line for me, either. It is my first time on an AI, but I've already failed tamoxifen and Faslodex.
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This is my 4th line treatment for MBC, but I'm still hopeful there is something, somewhere that can stabilize things for me. It was really great to hear Carolyn's news and I am really looking forward to hearing more ladies with the same news as we all get several cycles under our belts.
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Vague anxiety, anyone? For the last few days I've been waking up with a kind of anxious feeling, which isn't really like me. It's not about cancer, but just about whatever I have going on that day. Going out to lunch, worrying about a conversation I'm needing to have. Planning an event later, worrying about how it will go. Responding to a text from my daughter, wondering if I was too abrupt. Just general worry about little stuff. But it's kind of a physical feeling in my body- not just something in my head.
I'm wondering if it's a side effect of either medication- Letrozole or Ibrance. Anyone else notice an increase of anxiety on these meds? It seems I can't really relax.
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OMG Sandilee, in NYC on a short vaca and I worried about it incessantly. I thought it was my anxiety about being away from my usual medical care and then it was reaching into work and friends etc. this med seems to be doing this, I am even starting to have those strange dreams Hope is talking about. On a good note, back pain easing, perhaps that was anxiety too?
Watch Holly's video , it is the Mission Statement I want for LETS GET ORGANIZED! Have a wonderful day, Myra.
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Hi Myra,
Glad your back pain is easing. I didn't post any video, but maybe you are talking about the video that JJSKI was posting? The person in the link she posted is a patient at Dana Farber (like me) and I think she is on a trial similar to the LEE01 trial I was offered but declined (only her trial is only 2 drugs, the trial I was offered involved 3 drugs). I was unable to open it the video, but I thought the article was interesting since she is just doing just the pills, not chemo or surgery. Also it was very positive, maybe that's why you want it as a mission statement? sounds like a good one.
Sandilee, I do get anxious sometimes, but I don't think it's the Ibrance (in fact, I am sometimes very tired with the low blood counts on Ibrance, so when I'm exhausted, I am too tired to be stressed) - I find that music helps, and getting outside is important (beach or garden helps me), and exercise helps, and eating the right things. Try to do something to ease it - I know that managing stress is critical so I wish I was better at it.
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I think I'm going to try for more exercise. I haven't been tired on my reduced dosage--yet. I'm only a week and a half in, so it may be coming. I think I'll take a very long walk this morning and get rid of some of the antsyness.
Another thought: I do know that this med combo raises my blood pressure a bit, as well as my glucose levels. Either of those things could make me feel a bit wired. ( I was stunned how high my glucose was at my first blood draw after a month of this. Never been high before, but came in 108! Back down after my break, fortunately.)
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Great idea, Sandilee, hope it helps. Sometimes I check in with the exercise thread to get some inspiration - these amazing people are running marathons, riding horses etc.. although I once ran marathons and did just about every sport, I can't do much but walk now, and I sometimes read that thred to get inspiration to get my butt moving!
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Going to a seminar/update at the City of Hope this afternoon. Given by by three oncologists (one being mine) on ASCO and the latest (and hopefully bestest) BC treatments. Excited to hear great things. I'm sure there will be LOTS of Ibrance info. Let me know if you have any questions I may be able to ask, or info I can listen for and takes notes on.
Stefanie
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Hi Holly, I think the video Myra is referring to is the Holley Kitchen video posted on FB. Very powerful message. There is a thread here that has it posted and discussion. https://community.breastcancer.org/forum/8/topic/8...
You were right the drug the woman is on is referred to is the LEE drug. I noticed it on the drug description after you mentioned it. Very possible she was put on it before Ibrance approval as you said. Just made me wonder if it could be added to the arsenal.
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Thanks Stephanie,
One thing I've been wondering is, do they let patients stay on this combination if their white blood counts, specifically their neutrophils, continue to dip way down every month? At what point (how many weeks of time off) is the drug no longer viable?
I may have to take three weeks off every month in order for my counts to go above the 1100 my onc wants them to be. Will the drug still be effective on this type of reduced schedule?
Whatever you can gleen about this topic from the talks would be appreciated. :-)
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Sandilee, I will try my best to get some answers/opinions on this.
Stefanie
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Well, that talk at my hospital was NOT what I thought it would be. No talk of ASCO or Ibrance. It was about City of Hope's research and the future of breast cancer treatment. Two brilliant research doctors joined my Onc to discuss immunotherapy and gene therapy, which included manufacturing super bot viruses trained to go after cancer. Apparently trials coming soon, within a year or two.
Very interesting stuff, but not topical to this thread.
I am seeing my Onc next week so I will try to get his opinion for you, sandilee.
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Regarding Ibrance, my understanding is that you are titrated from 125 mg. to 100 mg and then 75 mg. If the lowest dose still wipes out the white count then the drug will no longer be prescribed. I have recently finished a 25 day break and was given 100 mg a day with Femara. The weirdest part is that I seem to have digestive issues with the 100 mg where I did not with the 125 mg. Maybe there is an explanation or it may be an overactive imagination..Sure hope it works because it took my tumor markers to 6. Carolyn from Music City
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Stefajoy, do you know if they recorded the COH presentation today so that we can access it? Can you tell me the names of the presenters?
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Car2tenn, it seems like I have mild digestive symptoms the first couple days of each cycle. I think the first couple days of the cycle require a careful diet for me. (Now on cycle 3 and changed to 100 mg.)
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A very timely conversation going on here. I was lowered to 100 mg on this cycle and it is the weirdest I have ever felt on this drug. I work outside all day pretty hard so I can't blame it on exercise or outdoor activity. I am way more anxious, spacey, major non sleeping issues. I am watching water, protein, good food. My question to my trial nurse will be about fillers. If the dose is lowered do they add fillers? Always super sensitive to that stuff. I always had two good weeks and one bad. Not this month
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Stefajoy, really interested in hearing more about the trials. I'm in Southern California and Immunotherapy trials are extremely interesting to me. Please share as you get more information.
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I find the immunotherapy trials a very interesting topic, too. This seems to be the future of cancer therapy- something that may actually provide a cure. At least for some cancers, for some patients. I'm interested in whatever you can share about it, Stefajoy.
Lenn- I hadn't thought much about fillers to the Ibrance. I feel better on the 100s, except for the anxiety that I really can't definitively blame on the medication. Instead of tired, I'm a bit wired- but who knows.
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my doctor is Dr James Waisman ( a god to those who know him). He is at COH, collaborating with dr Peter Lee and dr Yuman Fong.
You can look up their research on line. It's pretty amazing stuff, but the mazes and the hoops to get approved for trials takes time. They are close. Maybe 18 months from human trials. These men feel that a between immunotherapy (dr.lee) and I don't know what they call it but it's basically injecting microviruses that attack and kill cancer cells (dr fung) as the way breast cancer and other cancers will eventually (sooner than later) be cured. It's already happening, just not in humans. But the methods are safe, just working on approval. It's a process.
They are not after temporary fixes, although we do all need our temp fixes right now, but they truly believe the cure for metastatic disease is close at hand. They are not hesitant to use the Cure word. I'm not good at regurgitating the science, but I was impressed by these doctors and I'm feeling really hopeful for the future. I hope we all make it there.
It was recorded but I don't know for what. I will ask Dr W when I see him next week.
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Stefajoy,
Thank you. I looked up your doc and found out he is also on staff with my onc, Dr. Chan, at Little Company in Torrance. :-) I know who I'll go to if I need a second opinion! My onc is also excited about the immunotherapy potential- we just have to hang in there long enough to have access once approved. Would you do a trial if the possibility were to come up?
You are on Ibrance now, I see. Are you also taking Femara? I also see Faslodex in your profile and am wondering if Faslodex failed you eventually, like me, or are you still taking it with the Ibrance?
Thanks for reporting the information back. Information is hope.
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I would do a trial. That's my hope for all of us--hang on long enough for immune therapy etc. and a cure.
If I had been at the COH presentation, I would have asked
1. Are the upcoming trials going to include stage IV people?
2. Will the upcoming trials be for any particular subtype(s) of bc, or for all? I have ILC.
3. Is there any treatment that would exclude me from the trial, so I can avoid it if possible?
Thanks for reporting, Stefajoy.
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Sandilee - I failed on Faslodex with exemestane after 3 years. I am now on Ibrance and Letrozole (femara), but i wonder if my doc will change me back to faslodex once its approved to pair with Ibrance. I see him next week and will ask. As of yet, my appeal is still pending with Blue Shield and the Ibrance hasn't been covered at all. Maybe with the Faslodex they will cover it ,since it will be approved as a second and third line treatment.
Shetland - It was a big room and, in the end, only a few questions were able to be asked. I do believe the trials will be for metastatic disease, as that is what they are trying to cure. What makes one qualified (or disqualified) is yet to be seen, but ultimately it shouldn't matter where your cancer is, if it can be hunted and killed by these little nanobots (virus). Something else super interesting for the young women yet to be diagnosed, the goal is no more invasive surgery, no more mastectomies and no more lumpectomies. A small tumor found in the breast will be able to be completely annihilated with an injection (of virus) directly into the tumor, and viola...no more breast cancer. The future is bright.
I would like to think, with all of the great new treatments currently emerging, that we will all make it 3 - 5 more years, and then maybe we will finally be able to be cured.
Hope is a powerful thing.
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Wow, Stefajoy! It is wonderful to imagine a cure in time for us. You post gives me new hope.
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Wow Stefajoy. Would be great to imagine a cure for all of us in less than 5 years. Would love to see it for some of the young women that are in their twenties and thirties. So heartbreaking and even worse that we all get denied treatments, due to insurance, that may help us. Let's just hope that Ibrance and also some of the new and promising treatments on the horizon help us until the "cure".
Got the results on my Tumor Markers done last week. I am now at about the same as when I started at the end of February, which was good after being on Halaven for a year plus. I'll take stable results. Interesting that they went up after about a month on Imbrance and have now come down again.
Will keep hoping and praying.
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Stable is good! Hormone treatments don't work as quickly, so it sounds like you may be on the right path. That also gives me a little hope that the increases in my tumor markers will reverse. I will know soon. I had my blood drawn yesterday, appointment tomorrow.
I think we all need a little something to hope for. Kinda like it's nice to fantasize what you'd do if you won the lotto. Important to remember, though, you gotta play to win! Buy me an immunotherapy ticket, please!
My 11 yr old has his 5th grade promotion this afternoon. On to middle school after this. He was 6 when I was first diagnosed and it was hard on him to see his mom so sick from all the treatment. He has adapted well over the last couple of years, but I know he has fears. I've been feeling a little sad and weepy the last couple of days. I hope I can kick it to the curb and enjoy this afternoon without crying!
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Romansma, the life events are especially emotional when you have BC. My daughter was in 5th grade when I was diagnosed. I didn't know if I would make it to her bat mitzvah, but I did. It was emotional, but actually it was mostly joyful and fun. This week she is graduating from middle school and my son is graduating from high school and yes, I think there is an extra level of emotion for us because we don't know if we'll make the next great life event. At the same time, we are sooo grateful that we get to see this particular milestone. We know grateful more than the average healthy person. My next goal is her high school and his college graduation in four years (funny how the end goal keeps moving). Try to relish in the joy of the moment and not let the sad take that away from you.
Stefanie
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Romansma I hope you will enjoy this afternoon to the fullest and only cry tears of joy. Stefajoy is right, we do know grateful more than the average person. I received a "save the date" last week for my friend's daughter's wedding in 2016. I started to cry because I was wondering if I was going to be here to celebrate. But then I kept reminding myself how many year's I've thought this way and how many joys I've been here to celebrate. And yes, the end goals always keeps moving.
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Beautifully said Dorothy and Stephanie. Enjoy your day Hope with your family. Cry, laugh and do it with gusto! My family expects it, even prior to MBC. Myra.
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Yes, you are all right! I don't take any of it for granted and I'm so grateful to be here right now. I think it's a heightened sense of emotions....all of them. I was explaining to my psychologist that everything feels so much more intense these days. I get my feelings hurt sooooo easy, and days like today feel like a bundle of emotions hanging out for everyone to see. Maybe it is the drug combo!
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Hope I also think a lot of it has to do with us facing our situation. Many times days will go by and I don't focus on what is going on with my body, especially since I feel very well. Then something will trigger the emotions. Last week I went to a close friend's daughter's high school graduation. I kept focusing on whether I'd be here to celebrate her college graduation.
Enjoy the day. Know that there will be many, many more.
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I did good.....until the principal presented them as the 5th grade class of 2015 and the high school graduating class of 2022. Then I lost it. Let's get those trials going now! I want to be there for.his high school graduation in 7 years! And beyond!
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what a gorgeous picture and handsome son 🎓🎓🎓 Myra.
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Congratulations! What an apple-cheeked doll he is! You make quite a good-looking duo!
Tina
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Wow RomansMa! You make beautiful babies! Congratulations to you both. Here's to the class of 2022 and some great trials to get us there!
*susan*
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Dorothy and I having a wonderful brunch in NYC. It was so wonderful to meet a new friend and be able to chat so freely. What a great time we had! Myra -
Congratulations Hope. Your son is so handsome and his mom looks so beautiful! Let's all toast to successful trials and being here to celebrate the class of 2022.
Dorothy
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I am so confused about the Ibrance situation right now and I was wondering if anyone could clear it up for me. I just had to change treatments to Fasoldex. After reading about Ibrance, I asked my MO why not add that to the mix as well. He told me that there were no studies to show that Ibrance along with Fasoldex was any better, that the side effects were worse than just the Fasoldex alone, and that insurance would not cover it since it wouldn't be my first line of treatment.
I went to a meeting tonight to hear Dr. Hudis speak at MSK and he basically said the same thing.
However, when I am reading through the threads it seems there are plenty of people taking Ibrance who have been treated in the passed and that it is working great.
I guess I'm not understanding why wouldn't I want to be on it?
Renee
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Lovely photos ladies! You all look terrific. Congratulations to your handsome little man, Hope!
My daughter graduates high school tomorrow. I have the same thoughts, just hoping I will to be able to see her graduate college in 2019 and be there when my son graduates high school in 2020. But tomorrow I vow to relish the moment!
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Romansma,
Your son is beautiful and I think with all the new discoveries out there you have every reason to be optimistic. You are doing everything you can and taking good care of yourself. I know it was (and is) hard. I feel the exact same way. Every milestone is so much more important it seems. I have a close friend whose daughter has cystic fibrosis and she has watched every milestone of her daughter's life with fear it could be the last. She tells me she just kept going on with all the new advances and medications. Just like we are doing. Her daughter is now 27 and is doing well after a total lung transplant.
But, I know exactly how you feel. One of my daughters is getting engaged and I hope she plans the wedding now. I feel a bit selfish, like if I was "normal" I might tell her to wait until after her master's degree or something. But, I don't want to miss it! I don't want to miss my other daughter's college graduation, either, and feel so grateful that I've come this far with them
I thought you had to get your blood drawn soon. Let us know how you do. I am not getting my first blood draw until week 4. Seems like they should be doing it sooner.
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Hi Rseman, the Faslodex/Ibrance combo is not yet FDA approved, but this new study finding points to it possibly being fast tracked like the Femara combo. http://news.cancerconnect.com/combination-of-ibran...
My Onc believes that when the Femara combo fails, the faslodex combo will be next (I'm assuming that means if/when it's approved). She seems to think the way Ibrance studies are going, this drug will continue to be paired with the antihormonals.
Also, most women here are taking the Femara combo as a 2nd or 3rd line treatment. There are some who had previously taken Femara and it failed them, but were put back on this combo.
The major side effect of Ibrance is the low WBC but it seems most here are managing them either with reduced dosage or delayed cycle starts.
I hope this helps. I'm sure others willshare their thoughts.
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love this thread!
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Rsman and all,
Do I have this straight, You are on Faslodex and want to be on Ibrance, too?
I am a bit confused about the Femera vs Faslodex thing. I don't think Ibrance works without some kind of hormonal. Am I wrong? Do ER- women take it? Was there a study with Ibrance/Femara vs Placebo? Let me know if any of you guys out there are on Ibrance alone.
Both Femara and Falslodex work with the hormonal system, but in different ways. Femara blocks androgens turning into estrogen (aromatase inhibitor) . Faslodex "inhibits cell division by binding with and downgrading estrogen receptor protein in breast cancer cells"
Falslodex is a bigger deal. I don't want to take Faslodex if I don't have to because it messes with your liver and stuff. It has more side effects. And it's a shot (a 2 hr trip to the treatment center, if reason enough!) But, me and several others have already tried Femara and it stopped working. The big question is: Will Femara start working because it is now being taken with Ibrance? This is the danger with using drugs before thy have been fully tested! But then, I don't want to wait! None of us do! Also, the Faslodex/Ibrance study by Lilly is still in progress.
Your doctor talks about second line drugs. Right on the prescribing information for doctors it says " FASLODEX (Fulvestrant) is a prescription medicine used to treat hormone receptor-positive metastatic breast cancer in women who have gone through menopause whose disease has spread after treatment with antiestrogen medicine. I think that make Faslodex second line hormonal med, right? Ibrance is also a second line drug. I think your doctor wants to save it for later and draw out your options. But then why give it alone?
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Love all the photos! The photo of you and your son is wonderful, Hope. Thanks for posting. And I loved seeing Myra and Dorothy. How fun that you actually met! I wish there was a way we all could meet, but being spread out across the country, easier said than done.
Rseman- I can understand why you're confused.Your doctor is kind of right, in that the FDA hasn't officially approved the Falsodex/Ibrance combo, although the studies have been submitted. It will most likely be approved in time. Because it's not approved yet, insurance wouldn't cover it. Once it's approved, however, it should be available to women who are 2nd and 3rd line, not just 1st. Which means, down the line, you should be able to add it to the Faslodex. He is also right that the side effects are more serious with Ibrance than with Faslodex, specifically white counts. They need to be carefully monitored. I was on Faslodex alone for 3 1/2 years and it was just a once a month shot in each hip and done. Easy. I would have been happy to stay on it indefinitely if it had continued to work. But I'm grateful for the long progression-free years I had on it. Now, with Ibrance/Letrozole, I need to have my blood taken every couple of weeks until they figure out if my body can handle the lowered counts. It's kind of a nuisance. It will be worth it if it works, but it's too soon to tell, for me.
It seems like you are on a good therapy, and Faslodex can work alone for a long time. If it continues to work, maybe he will be open to letting you try it with Ibrance once the studies come out and the drug is FDA approved.
Vivian- I'm not sure what you meant about Faslodex messing with your liver. My liver numbers have been fine throughout my treatment. I think of Faslodex as one of the easier options out there. I didn't have any of the aches and arthritic issues that often come from the AIs. My CEA went from 260 down to 3, and stayed down for three years. It's now just beginning to climb up a bit, so I'm eager to see what my new combo will do.
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Sorry jjski, You answered a lot of my questions. I did not see your post before I sent "send" (actually I forget to press "send" and was shutting down my computer!) I think my 3rd or 4th lines of treatment are messing with my brain cells right now!
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Great pic Myra and Dorothy! Wouldn't it be great if we could all get together and discuss all this in real time?
Chalk this day up to more great memories. It was a very good day and I truly am grateful to be here to enjoy it. Tomorrow, MO appointment. I'm dying to know what my tumor markers are doing. I probably should stop using that phrase, huh? Sleep well!
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good luck Hope. It would be great if we could all meet. Have a great day all! Myra
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Good luck today Hope! Keep us posted. I agree, it would be wonderful to meet all you ladies sometime. We certainly have a unique, real connection.
Joanne
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Okay..... still waiting and waiting here to even hear about the approval, but in the meantime I have realized I have no idea how to pronounce either Pablociclib or Ibrance. Is there anyone on this thread that can create a pronunciation guide like they do in a dictionary? Tomorrow will mark 5 weeks without a complete treatment. I am taking the femara. but that doesn't feel sufficient.
*susan*
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Susan, that is insane! What is the hold up? I was approved in a week. Is your MO staying on top of this. Perhaps it is time to get on your ins. co. and require an intervention to get this moving. Five weeks is an inordinate amount of time. Myra.
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Myra,
I was traveling during much of this period. The approval process was initiated 13 days ago. If I don't hear back from them tomorrow, I will be calling the doctor directly. She has clinic hours on Thursday.
*susan*
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I was on Palbo trial for feasiblity (early stage) --- I have heard these pronunciations from my MO:
"Pal" - "bow" - "sigh" - clib (like "clip" with b substituted for p)
"Eye" - "bran" - ce ("brance" rhymes with dance)
Hope this helps. My MO did lead the feasibility study; so, maybe this is accurate...
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Thanks Daisy. That seems to be what my oncologist said as well. These made up words are annoying!
*susan*
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Gotta agree, the drug names make me crazy sometimes! I'm a little nervous about my appointment today. I think I've done a great job at convincing myself that this could still work, even though my tumor markers have increased. It's been about 4 months since the approval of Ibrance, so we should start seeing results from many of us that have been on this combo from the start. We have this mini-trial going on right here on BC.org! On that subject, anyone gaining or losing weight on Ibrance/Letrozole combo? I lost weight on the Afinitor/Aromason combo, just didn't have an appetite and things didn't taste good. I've gained 11 pounds on Ibrance/Letrozole. My MO says it's the menopausal side effects of the drugs slowing my metabolism. Not sure I buy that. I was slammed into menopause a few years ago by an oopherectomy. I suspect it has more to do with my sugars not being as stable as they were before. Whether that is drug induced or something else remains to be seen. Anyone else having higher glucose readings on this combo? or maybe it's just because I take too many naps because I'm so darn tired! Either way, I'd like to get a handle on this before 11lbs turns in to 20!
Have a great day in Ibranceland! I will report back as soon as I know more.
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Susan I was on Femara and Herceptin only for almost 5 years with NED, so the Femara can be powerful enough to work on its own, especially if hormonals have worked for you in the past. That being said, I think it took me about two weeks to get my approval for Ibrance. But good that you are following up with your onc. I got very nervous also with the delay.
Hope good luck with your tumor markers. Hoping that they are now on a downward trend. Yes it would be great if we could all meet in real time. It was wonderful spending real time with Myra.
A really beautiful day here in NYC. Hope everyone has a great day.
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Hope I have gained a few lbs with the Ibrance/Femara combo, but I chalk it up to having a better appetite than I did when I was on Halaven. But I have been able to manage my weight during most of the drug combos I've been on over the years. I'm taking Metformin at 1000 mgs a day which helps with the Glucose levels and also helps with weight control. Also take Green Coffee Bean by Jarrow which helps with Glucose and is said to help with weight control. Best of all, the Metformin is said to help control the cancer, which is really the key reason for taking it.
Dorothy
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My weight has been very stable mainly because I get full pretty quickly. I usually eat about half on my plate in restaurants. And m wine intake is a glass or less! This last time I did notice my glucose was high and it never has been before, but it was not fasting. Myra.
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I haven't gained any additional weight on Ibrance yet. I noticed a few additional pounds when I first went on the antihormonals though. Also, I had my blood work done and my glucose level was slightly high too (no fasting) and that was after one round. I think there is a trend here. One of my markers continues to drop ca125 and CA 15-3 has been in the 30s the last several months, although it has gone up in the range of 1-5 points in any given month. My Onc is not concerned as she says it's in the same range. She would be more interested if it doubled in any given month. My WBC and Neutrophils were okay but my lymphs dropped from .6 to .4 from the end of week 2 to end of week 3. I have another blood test on Friday to see if they recover. I may not restart in any event until after I come back from vacation on July 4, since I will be traveling to the Caribbean and she doesn't want to risk infection. That would mean almost a month between cycle 1 and 2. I am currently stable per a CT scan last week so Femara is doing it's job right now and she doesn't think it's necessary to risk spoiling vacation due toinfection. Bone scan results are pending but she does not expect any negative change. We will see.
Joanne
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Waiting for my Xgeva injection right now. Tumor markers are up again. They aren't doubling, but making a steady climb.
Since they aren't going crazy up (20 points this month) and because hormonal treatments can take time to work and because the alternative chemo wouldn't offer me any survival benefit, I am going to stay the course for another cycle. Maybe scan after next cycle, will determine after seeing markers next month. Feeling a bit somber, but not surprised.
Hoping this is the right path for me and that I don't regret any of these decisions. Wish it was all easier.
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So sorry Hope that the news wasn't better. But it certainly could be worse. 20 points is really not that much and could be attributed to many things. After going down initially, mine did raise slightly (40 points). Then then went back down again and are now approximately what they were when I first started Ibrance. My onc also told me that the hormonal treatments take longer to work and that he wouldn't be concerned unless the markers rose for three consecutive months. I know the most difficult part is the waiting. Did your onc also recommend to stay the course?
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Hope, I think you're making the absolute right decision and I would do the same. I certainly wouldn't make any changes until you are scanned and at least you can still stay on the combo until you get a better idea if something is changing. When was your last scan?
I know it all sucks. Hang in there.
Joanne
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Sandilee, I met someone (at my cancer center) that told me she was taken off Faslodex due to elevated liver enzymes. There could have been more going on with her but it kinda scared me. I suppose I should check my sourcesfor credibility!
Joanne, Have a good time in the Carribean! Leave your worries behind, it sounds like delaying the next treatment will be okay.
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Thanks for the reinforcement. This was the 3rd consecutive rise in tumor markers for a total of about 45-50 points since starting this combo. Doesn't look good. MO agreed that staying the course made sense based on my quality of life goals and just that hormonal can take a while to start working. She mentioned how excited the other oncs are about this drug.
I left my appointment feeling ok, but I just took a little mood nose dive. just need to get past this and concentrate on the important stuff. You know, like which shoes to bring on my cruise!
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Vivian,
I think that she must have had some other issues. I had 63 Faslodex injections, most of them double, and no one ever even worried about my liver. I was allowed to have wine or any spirit I wanted. Faslodex doesn't get processed through the liver at all. I wish terribly that it hadn't failed me at the 5-year mark. Such an easy treatment protocol for me. And, the best part was it worked! I was NED for over 4 years. Hope this helps,
*susan*
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Hope really in the scheme of things, 50 points is not that much. When I failed on TDM1 my markers rose 300 points in three months. My onc is also very excited about Ibrance and has mentioned to me that if we initially didn't get the results with the Ibrance/Femara combo, he would add something else to the mix, before switching it. He is known to do unorthodox treatments and combos. Has your onc discussed that possibility?
Now on to the cruise. When are you going? I loved the Alaska cruise. Are you going from Vancouver or Seattle? I went from Anchorage to Vancouver and then stayed in Vancouver for three days. Yes you definitely need to worry about what shoes and what dresses to take. Please remember to take a warm jacket. I didn't and had to buy one on the ship. You'll need the jacket especially for the days at sea. Also walking on the glaciers was freezing and I wore gloves, bought on the ship also.
Dorothy
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I'm way behind on this thread, but wanted to say how nice those pics are, and congratulations on your little guy's big day, Hope!
My tumor markers are still going up, too, Hope. Glad to hear, pearlady, that yours went down, that's something that gives me hope, but if I'm honest, I'm still concened. After failing tamoxifen (fast) and Faslodex (about a year), if Femara/Ibrance is a non-starter, that will be about it for anti-hormonals for me. But it's still early days, so no use borrowing trouble, right? Fingers crossed for both of us!
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Yes, I think if we were seeing huge increases in tumor markers, I'd be the first one to insist on scans and a possible change in treatment. I realize the increases are not huge. However, I'm disappointed, and even a little worried about what this all means going forward.
She didn't mention any possible additions. I think I will shoot her an email asking if there is anything. The only thing I can think to ask about is adding Faslodex or changing from Letrozole to one of the other AIs or even tamoxifen. Just concerned that insurance won't cover any changes. Anyone have any ideas?
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Rose fortunately or unfortunately I've been at this a lot longer than you and Hope have. Just because you fail on one hormonal, doesn't mean that you fail on all. I did very well on Femara combined with Herceptin for almost five years, yet Arimidex only worked for me for a little over a year, but I did very well on Aromisin. If Faslodex worked for a year, perhaps you could get that with the Ibrance, providing the insurance would approve it. At this point, you still have many options. I just wish that there would be more drugs approved with Ibrance and that they would hurry up and get them approved. But at this point, its too early to say that the Ibrance is not working for you. My markers also went up in month two but have since come back down.
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Hope have you ever had Tamoxifen? I found it a fairly easy drug to tolerate. Also, I know that some oncs do give Tamoxifen in addition to one of the Aramotase Inhibitors and are able to get it approved by insurance. It seems to be up for discussion whether its a good thing to add Tamoxifen to another hormonal. Some oncs are in agreement and some not. My onc does prescribe in certain cases with an Aramotase inhibitor. I would not be a candidate for that since I've had Tamoxifen twice before.
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Susan, You inspire me! I would love to see 4-5 yers on Ibrance and then on Faslodex!
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I don't know if I should spitting nails or thankful. My new PA, who doesn't appear to be very good at her job and clearly doesn't care for me, finally called today at 4:30 asking cheerfully "What day did you start the Ibrance?" Ummmm.... I don't even know if I have had an approval, don't have any drugs, and have not started taking the drug. She didn't spend time talking through the side effects, what responses they needed to know about... She did mention the blood counts and diarrhea when pressed. When I asked how I should manage diarrhea if that is what I got, her response was "change your diet." So, I asked the next logical question, how should I modify my diet. "No dairy or fried and fatty foods." I explained that I don't eat those things, what other ideas did she have. None. (Has anyone changed doctors when confronted by such incompetence?) Anyhow, an hour later the phone rang again. The pharmacy was calling. The difference was astonishing. This warm and kind woman apologized at least 20 times. This drug was approved SEVEN days ago. SEVEN!!!! Indeed the pharmacy was to call me to arrange delivery. When this woman got the urgent message about me she took one look at my record and said to herself "that makes no sense. Boston's area code isn't 817, it is 617!"
And then she apologized some more, told me she would be calling in about 20 days to schedule the next delivery. The drug is already on a truck and will be delivered tomorrow.
So, with trepidation, we are off to the races.
*susan*
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Pearlady, interesting about the option of tamoxifen + an AI. I haven't heard of that. When the alternative is chemo, it seems like doctors should be willing to take the risk of not too much data on the combo. It is similar to the concept of Faslodex + AI, which I am on now, as tamoxifen and Faslodex both work on the estrogen receptors. Good to know about another possible option.
Susan 02143, don't hesitate to get rid of your PA. You can't afford incompetence at this juncture!
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Susan, I would be on the phone to my MO telling him about this experience and to never have this woman deal with my case again. Seven days? Unbelievable. Thank goodness you had a "with it" pharmacy tech. Myra.
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Holy crap, Susan! That PA is a callous and flip piece of work. I would tell her how her poor communications skills and cavalier attitude have affected you, then see what happens. If there is no improvement, report her to your oncologist.
I imagine she was thrown off balance by your news that you didn't have the drug in hand and was champing at the bit to get off the phone with you so she could call and berate the pharmacy. That's the only thing that might explain--but not excuse--her terse, unhelpful responses to you.
I am glad to learn you can at last begin the new treatment. The pharmacy made a mistake and apologized for it. But from what you describe, the PA probably made a mistake in her choice of career.
Tina
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So glad you get to start on Inrance, Susan!
Dorothy. Do you know of any studies adding tomoxifen to AI? May need ammo. I took tomoxifen for a very short time prior to my oopherectomy. No idea if it worked.
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susan- so glad you are finally getting somewhere! It seems that communication and correct information between our doctor's offices and the pharmacies are crucial in this situation. One mis-step (is it likely the incorrect phone # came from the PA as well?) can cause delay or denial. In any case, things can move ahead now.
Btw, I have had no digestive issues at all with the drug, so don't worry until something happens. I hope you have another PA option at your onc's office.
Good luck this week! Btw, any discussion about testing for blood counts, or will they just test at the end of the cycle?
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Hope, my MO trying tamoxifen again since it worked so well 10 years ago. He said some women have had great success going back to it.
I am starting to get worried about my rt side pain. The whole time I was in NYC I was basically great. Get home and it is back again. Counts next week. When DH massages it he says it feels muscular. Don't know, I guess we will see. My counts have been mixed. One is up and one is down. This stress is so difficult to handle. I wish I could find something that works longer than a few months. Myra.
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Sandi,
I now have a standing order for the CBC and the full panel so I can get them anytime. I have been told that I need to get the CBC on day 15 which is now on the calendar. I have a small window between doctor appointments and blood draws and plan to head to Cape Cod to see some of our closest friends. Summer in New England is NOT to be wasted! My oncologist is great.... she trusts me to know my body. The PA replacement is the problem.
Thanks for everyone's good thoughts.
*susan*
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Hope I don't know about any studies with Tamoxifen but I was on it once after my initial chemo for 3 years and again several years ago in combo with Aromisin. I think it did work with the Aromisin. My onc does prescribe it with an AI and feels that you can take it a second time. I think as a patient we sometimes have to be our own advocate.
I have not had any GI issues either on this combo. Sometimes minor constipation, but nothing major.
Myra I hope your pain gets better and that your markers are down. It's really stressful to live from month to month to see what the tumor markers are. I try not to get excited when they are good because then I start to worry about what they'll be 4 weeks from now. A stressful way to live.
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Susan, that's great that you've been approved, wishing you great success with Ibrance! Sorry about the PA, she sounds a little less than useless in that role for you, sheesh!
Hope, I've seen trials going on with some of the different inhibitors including Ibrance and tamoxifen (one example and and another) but no idea how they're going or when results would be expected. Good to know they're looking at things like that, hopefully they'll have some good things to offer when we all need them.
And pearlady, thank you! Just the pep-talk I needed. It's so hard to live with this kind of uncertainty, and I really found the tumor markers going up (again!) hard to take. Glad to hear you found success after the same!
Going in today for bloodwork, hopefully enough white blood cells to start up with the Ibrance again. Also getting an ultrasound of a new lump in my (former) breast--onc thinks it's probably fat necrosis, but wants to be sure. Hard to get too worked up over it, though, because what's the worst thing they can tell me, that I have cancer (ha!)?
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Celebrated my daughter's high school graduation last night. My son is entering 8 grade and she's off to Bucknell University in August. Living for their graduations in 2019 and 2020!
Joanne
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Beautiful family Joanne. Enjoy the celebration. Myra.
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UPS package of drugs arrived. I wasn't expecting such a dramatic interior bag however.
*susan*
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More gorgeous family photos. Love it! Thank you, Joanne.
Susan- yes, isn't it funny how large the shipping container is for such a small bottle of 21 pills? Mine came in an 8x12 cooler, with ice packs!
Good luck today, Rosestoeses. I'm going in for my mid-cycle CBC today, as well. I hope they let me keep going. I'm on the 100mgs, so it should be interesting.
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Ha, Susan, my Afinitor used to arrive in that same bag!
Roses, thanks for the links. I will check them out and see if they are getting any early results that can help my case.
Joanne, gorgeous family. Congrats to you and your daughter! Here's to hanging in for the next milestone! I've got June of 2022 on my mind!
Today is a new day. Yesterday is in the past. Right now, I'm enjoying the smell of fresh brewed coffee. The summer pattern of fog in the morning is outside my window. June Gloom, as we call it. It's familiarity makes me smile.
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Beautiful family Joanne. Thank you so much for sharing. I don't know about the rest of you, but I get very emotional when I see these beautiful family pictures. Hoping we can all celebrate with you in 2019 and 2020.
Susan my Afinitor also came in the same type of package. I'm glad you reminded me. I have to re-order today from CVS Caremark and will make sure that the Ibrance/Femara is packaged the same way.
Hope I'm anxious to hear the results of your discussions with your onc. And yes, I love fresh brewed coffee also. And the best news is that now they're finding that coffee does have health benefits.
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Fresh brewed, organic coffee....
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Hope sounds good right now. We do organic Costa Rican at home.
The coffee in my office is so terrible that it keeps me drinking less coffee during the day. I can buy organic across the street, but sometimes get too lazy to go outside.
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Hi Ladies,
I've read the whole thread. I will rephrase my question:
Has anyone here tried Femara (Letrozole), had progression, and is trying Femara (Letrozole) again but this time with Ibrance?
Thanks.
Brenda
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Brenda,
I was a femora virgin until 2 weeks ago, so no help at all to you. Sorry.... I did do Aromasin for 7 years but that is just not the same.
*susan*
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Hi Brenda,
Yes, I believe Pearlady did take Femara many years ago and was put back on it with Ibrance. I'm sure she can offer more details.
Joanne.
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Adnerb I did take Femara/herceptin for almost 5 years before progresion. So now now getting Femara with llbrance.
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Lovely family, Joanne, congratulations on the exciting events!
Adnerb, sorry, this is my first time on Letrozole.
Thanks for the well wishes. Haven't heard back about my counts yet, but I'm running into trouble with the pharmacy getting the 100mg Ibrance (was covered under Rx plan with one network, now, I'm told, covered under medical not Rx with a different in-network specialty pharmacy, ugh!), so regardless the return to Ibrance will have to wait. On the good news side, the breast lumps are simple cysts and complete non-issues, so that's some good news for today.
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Some really good news Roses. Myra
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I failed Femara/Faslodex about 18 months ago, Brenda.
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Just popping in to say hello. Lovely to see the photos and hear about celebrating milestones.
Susan, RosesToeses, and others who have had trouble getting the drug shipped-- I also seem to spend a lot of time these days making sure other people are doing what they are supposed to do. I had to make sure my nurse would order my new dose and the pharmacy would ship it in time for me to pick it up and start on the right day. It wouldn't have happened if I hadn't been thinking ahead and making calls. If my blood tests are to be done on the right cycle days, I have to start the cycle on a certain day of the week to coordinate with my onc's two clinic days.
I'm still trying to get a predictable schedule and some answers about when they want blood tests done and when the doctor wants to see me. Do you guys have a predictable schedule for blood tests and visits? Or am I being unrealistic? I can't be the only one with other things to do and a long drive to the cancer center.
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Ladies, as hard as it is to recommend I think we should be more patient with the whole medical world on Ibrance. When I was started on it, I was the third patient that the physician had prescribed it for. She said it was so new that none of her resource described the various mg. dosages. When I got it from the specialty pharmacy, the contact person said it had been approved so abruptly that the pharmaceutical company had not had enough warning to produce informational pamphlets. Even my very experienced MO was a little shaky on the exact protocols for timing of the labs to be drawn. In addition, the drug is so relatively rare that only specialty pharmacies dispense it It is listed as an anti tumor med which is why it is delivered like it as if it were plutonium. Anyway, I am thrilled to bd on it and hope it is my ticket to a long period of non progression. Carolyn from Music City
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Roses really great news. So happy to hear it.
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Brenda, I was on Femara for 5 years before it stopped working. I am now on the Femara/Ibrance combo.
Joanne, Love the graduation pictures! You do have a beautiful family
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Hope,
Did the Femara and Faslodex work at first before they failed? I mean did one of those drugs stabilize or regress your MBC before it failed?
Thanks!
Brenda
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Roses. May I ask which insurer you have? I really want to keep working, and if I have trouble on this drug, I fully intend to ask for the 100mg dose. If we have the same insurer it would be nice to know that we might need some extra time.
car, my problem is not with the process, but the person who dropped the ball. If this were the first problem with her, I would be far more forgiving. Heck, if she had just apologized for screwing up, I would have moved on. It makes me extremely nervous to have someone managing my care who is unable to say "I made a mistake." My approval was given in 4 days, but due to this person's errors, I didn't get the drug until 14 days had passed.
So, pill no 1 is in me now. I had a wave of nausea which subsided fairly quickly.
*susan*
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p.s. Just noticed the date!!!! 10 years ago today I received my first dx of Stage II breast cancer. My tumors have always loved Spring.
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Myra,
Where exactly is your right side pain? Does it get worse when you eat? It could be your gallbladder. You could have strained a muscle around your ribs. I had costochondritis (inflamed cartilage) once, but that was on the left side. It may have nothing at all to do at all with cancer - (I always jump to thinking any medical problem is cancer-related!) When do you see the doc?
On the subject of tamoxifen: I was told by my MO that I would not be a candidate for tamoxifen because I had hit menopause. Anyone else told the same thing?
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Vivian, tamoxifen can be taken by both pre and post menopausal women. It was the standard of care for many many years. *susan*
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Vivian the second time I took Tamoxifen I was past menopause and it did work in combo with Aromisin.
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vivian- My onc also considered Tamoxifen for me, and I'm way past menopause.
Susan- I do think that the pharmacies may not have the 100mgs on hand. My pharmacy, CVS Specialy had to order it from the manufacturer. It took about two days and it was a special Saturday delivery. One thing I will say about the CVS Specialty is that they try to get things to you as fast as possible. He first quoted me the following Tuesday ( I was calling on Thursday), but I said that my doc really wanted me to start on the weekend. So they said they would rush it.
Shetland Pony- At the beginning, it is a little confusing while the right dose/timing is being figured for each of us. I am the one who has to make the call to the pharmacy to order the drug. It's set up that way, although the docs call in the prescription beforehand. But the pharmacy won't send it out until I make the call and say I'm ready. As far as the cycles and blood draws, my onc and his NP are pretty on top of it. They know when they want me to start, when they want me to come in for tests and they let me know, so I make appointments on those days with their scheduler. I don't need to worry about my doctor being there except for the monthly appointment before I start the next cycle, as the labs on day 15 can just be drawn by the tech. It seems pretty organized, but it does take some coordination on my part as well.
Had my blood drawn today but I didn't wait for the results. I didn't get a call. I hope that's good news!
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- Thanks for the feedback. I believe it was the ARNP that told me that tamoxifen was not preferable for post menopausal women, but the MO was aware. I was initially treated with Femara for this reason. Then I moved on to aromsin/afinitor I will speak to the MO about it. I am planning to ask a lot of questions when I see her.
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Hi everyone,
Wow, a lot of activity here! Great pictures - hoping we will be here for many more graduations and many other happy occasions. Susan, sorry you had the unnecessary delay, but glad you were finally approved. The side effects have not been bad. No diarrhea, as long as I don't drink coca cola. Dairy has been fine.
I had my appointment yesterday and my numbers are what my onc considers stable, so he was pleased (I previously quickly failed both letrozole alone and faslodex alone). My CEA did go up a few points, but he said that was nothing (4 points) and the other tumor marker went down from 1045 to 1003, so he said this looks stable (though the scans scheduled for July will tell us more).
Since I don't like surprises and want to be prepared for the next step if this stops working, I asked him if he would consider pairing the ibrance with the faslodex, and he said he would. As he pointed out, the combo I'm using now (ibrance + letrozole) is not FDA approved since it is not first line for me, so he didn't see any reason why insurance companies wouldn't cover the combination of ibrance with faslodex given the Paloma 3 trial results with Ibrance/Faslodex being more effective than Faslodex alone. My neutraphils were 1.23 and total white cells were 2.21 - while these are in the low range, they were higher than last time. So he decided to keep me on the 125 dose for now since, although I am very tired some days, it's not every day, and I seem to bounce back so far. Pearlady, if the counts go too low, my onc says he would delay the next cycle or would lower the dose to 100, but they would not give Neulasta or Neupogen (he didn't explain, but I guess that's because the lowering of the blood cells is actually what is stopping the spread of the cancer).
Romansma, I agree with your decision given that the SE's of Ibrance are not too bad, and as long as the TM's don't dramatically show a pattern of increasing. Don't give up hope if this stops working, either, since it sounds like there are going to be other options (i.e., probably Ibrance with Faslodex) when one combo fails. Tamoxifen worked for me for a long time, I wonder if they are pairing it with Ibrance. Also, this immunotherapy sounds really promising, and my friend says there is a T-cell trial going on right now for breast cancer at Tufts Medical Center in Boston. All sounds promising.
Myra, sorry your side pain is back, I am also wondering what it means since I have a lot of side and back and rib pain also - hard to get comfortable sleeping, tough to reach or lift anything. The pain was finally easing a bit after hearing a crack- then pain- a few weeks ago, but then I heard another crack on the opposite side, with pain- wondering if my ribs are cracking, I guess a few cracked ribs won't kill me, but the scans may tell me more in a few weeks.
Daisylover, my onc says they are now finding that prilosec and protein pump inhibitors are OK with Ibrance, is this what you are hearing also? However, I just heard that there was a news report last night that says Prilosec is associated with irritation in the esophagus, so I am going back to the zantac for now, and watching the diet, at least while taking the Ibrance (and he still says to space the antacid 11 hours away from the Ibrance/letrozole, though nothing sounds definite or proven).
Sorry to be so long winded!
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Vivian, I think there were trials that showed that the AIs were more effective than Tamox for post menopausal women. So in that sense, Femara would be preferable to Tamoxifen for you. It was the same in my case, but once the AIs fail, there may still be the possibility of Tamoxifen. At least that is my understanding.
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Susan, my insurance is BCBS but the delay wasn't exactly on their end, it was more of what car2tenn was mentioning--It's new and everyone's a little confused! In April I contacted BCBS and they told me that since Ibrance was a pill (not injected or infused) is was covered under my Rx plan (different carrier) so I called the Rx plan company and they told me it was covered and gave me a list of speciality pharmacies that was basically "anyone BUT Walgreens." So I got my Ibrance 125 script sent to the CVS speciality pharmacy who filled it for 2 months.
When my onc sent in the script for 100mg Ibrance, she sent it to CVS. But now CVS is saying it's covered by my medical insurance (BCBS) because it's a speciality drug, and I need to have it filled at the in-network speciality pharmacy for my BCBS, which ONLY Walgreens.
Of couse, it took CVS 6 days and multiple phone calls from me to them with them telling me first that they didn't have the electronically submitted script, then that everything was fine just not entered yet, then that I'd have the drugs by Friday, then, yesterday afternoon I got a call from my onc's office that CVS had called them and told them they couldn't fill it because it was out of network. So I called onc, called CVS, called BCBS who called Walgreens on my behalf.
So, very long story short, the delay wasn't the insurer's fault, it was one of those "who's on first" situations. But everything should be sorted now, I hope!
But, I then heard from my onc last night that all my blood counts are lower than last week and I need to retest in another week before I get back on the 100mg Ibrance, so guess the delay getting the Ibrance will be just fine.
Myra, hope those pains go away soon!
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Forgot to add, 10 years, Susan? That's fabulous, congratulations and here's to many more!
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Ten years, Susan....here's to ten more!
Adnerb, I failed Faslodex/Femara pretty quick at about 4 months. However, I'm still convinced that one of these could still work for me when taken with Ibrance. It works by blocking a pathway that leads to drug resistance. I am encouraged by what Holly's MO had to say about Faslodex. Think I will run that by my MO too.
I've been up since about 3am. Pain is ramping up again. Not sure if it's my normal cycle of increased pain on my week off Ibrance or if it's just aches from the Xgeva. I woke several times soaked with sweat, so may be the Xgeva this time. I was silly tired yesterday too. That could be from being at a low point in blood counts. They weren't at my all time lows this time but WBC at 1.3 and ANC at .8. I could feel my throat getting a little scratchy. I have trouble with liquids and food feeling like they are stuck in my esophagus. My MO thinks I may be dealing with a mild case of mucositus. I have had a tendency to get the mucositus with other treatments. Afinitor and the radiation I had to my cervical spine gave me the worst, couldn't eat or drink for more than a week. Thankful it's nothing like that.
I did some checking on trials yesterday. Lots of immunotherapy type trials, but most are still phase 1. I'm hoping to get in at phase 2 or 3. just confirms that I am making the right decision staying the course right now.
It's Friday! We have a big group of friends going glamping this weekend to celebrate end of the school year. I think I'm going to go. My husband is having to get everything ready, but he doesn't seem to mind. I was thinking about canceling, but my son really wants to go. His friends are all going. Can't be too hard to sit in a camp chair and roast marshmallows, right?
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Thanks for the good wishes all. My pain certainly feels muscular, but your mind seems to always think the worst. It seems to get worse as the day goes on.
I am going for my bloodwork next week and Xgeva. My onc has after 3 cycles finally put me on a schedule. I may not get the xgeva since last month I almost passed out when I got the shot when my counts were too low.
My tiredness has definetly eased as the months go on. This month it was extremely manageable. It may be the supplements I am taking.
I did extremely well on tamoxifen, that is why onc is thinking about putting me back on if necessary. It worked for 16 years. I failed femara and fasolodex within 4 months of taking them. I am now just at 1 year dx for mets.
Hope have fun camping. My youngest was in the Indian Guides and some of my fondest memories (and his) were of the camping trips. Try to bring a cot at the very least! Getting everything packed and unpacked was the worst!
Best weekend to all...Myra.
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Romansma, Good idea to ask your onc about the Ibrance/faslodex combo. Adnerb, I failed both letrozole alone and Faslodex alone very quickly (although I was on tamoxifen for 5 years before failing that), but so far I seem stable on the Ibrance/letrozole combo and am on my 4th cycle now. I wonder if there are any other trials going on pairing the Ibrance with other drugs besides Faslodex.
Romansma, you are a trooper going camping, I hope you have fun and are able to get some rest and feel better soon. I agree, you have to be careful with a trial, make sure it's a really good one and won't wear you out even more.
Roses, good luck with your blood counts, they should come up with a little break.
Everyone, have a great weekend!
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Hope have a great weekend camping. Hoping that your pain subsides and that you can really get away from everything and enjoy the weekend. It could be the Xgeva shot causing pain. Lots of women I know have pain with that. I'm going for my first infra red sauna tomorrow. Will you get a chance to go before the weekend away? Will let you know how that goes. Really looking forward to it. Couldn't go last week.
Susan congratulations on 10 years. No reason to believe you won't be celebrating 10 more.Myra how many years were you on Tamoxifen? I didn't know you could take it for so many years. Wow 16 years is great.
My week off from Ibrance. Felt really tired yesterday but feel so much better today. Will get my blood checked on Monday when I go for my IV Glutathione and Vitamin D. I know that sometimes you feel great and the counts aren't great. I do think that the supplements are helping.
Met a woman in the oncs office yesterday who was diagnosed in 1991. She had a recurrence in 1995. In those days they were still doing stem cell transplants for breast cancer. She had the transplant and was ok for almost 10 years. She is still working full time at 68 and is currently doing okay. So that really gives me hope that there is the possibility that we can all have many more years of quality time.
Hope everyone enjoys their weekend.
Dorothy
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Good morning, everyone.
I can't believe how early some of you have posted this morning! Everyone is up early.
Romansma, I hope you can get a nap today. I'm so sorry about your pain getting worse and your possible mucositus. I applaud your plan to go camping with the group. Being around your family and friends is what we're here for, and your son will thank you. You can let others do the work and just relax. Sometimes getting away from routine and being around happy people is the best medicine.
Myra, I hope you get relief soon! When you go in next week, maybe your doc has some advice.
It's always hopeful to run into someone who has been dealing with this for over a decade. Dorothy, you are an inspiration on this board, yourself, having tamped down this beast since 1997! So glad you're feeling well today and I hope you do something nice for yourself this weekend.
I just logged into my patient portal to see if my blood results are in from yesterday. Amazingly, my neutrophils are at 2500! It looks like the dose of 100mgs is going to be tolerable to my system. It was only my cycle halfway point, so they still might dip at the end, but at least they are ok for now. Overall white counts were at 3.8, which is low but not really problematic. I'm feeling good. Let's just hope the meds are working on the cancer.
Grateful for the weekend, and grateful for all of you.
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Roses,
I have Harvard Pilgram and they outsource specialty drugs to Accredo. So far I have been impressed with them. Guess I will find out some other time about if they carry 100mg or if that gets punted to another place.
*susan*
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Congrats Sandilee!! I have been good with the 100 mgs. also. Sorry for the confusion, I meant I was on Tamoxifen for 5 years after chemo and initial dx and it kept it away until last year with bone mets dx. That is why onc is considering trying it again if need be. Myra
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Sandilee so glad for the good counts. That is very encouraging. Praying that the meds are working for all of us on the cancer.
Also, thank you so much for the kind words. I believe I have been very fortunate in that I haven't had any real pain issues. I also believe that part of how we do with BC is luck of the draw. As we all know, some BCs cancers are much more aggressive than others. But I truly believe that what we do or don't do plays a huge part also. Very fortunate to have found an onc who is so into complementary and holistic treatments. Of course working with a therapist who does hands on healing has helped me tremendously as well as a holistic pharmacist.
Sandilee I already did something nice for myself today. I bought a pair of earrings that I have been coveting for quite some time. I justify these purchases by saying that I deserve it, having to deal with all of this.
Have a great weekend everyone.
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Dorothy, I feel like we are totally in sync.. I too am on my week off and seeing Onc on Monday for labs. Is this also your first cycle on Ibrance?
Roses, thanks for the BCBS info. I was denied the first cycle, and we appealed. I haven't heard anything yet, but I am about to order second cycle. I'm hopeful now it will go through, especially since they put yours through.
Hope, EL Capitan?
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Susan - I had trouble with 3 specialty pharmacies - hours on the phone, barely getting meds on time - of all things the Safeway where I live has a specialty arm and they have been fabulous - johnny on the spot - every time. Don't know where you are and all could be different depending on efficiency of staff but just thought I would let you know. Susie
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Hi everyone, my mom is Stage IV & recently started Ibrance + Femara almost a month ago. She has had mets to her bone since her initial diagnosis in 2011, which went on to her liver and more recently, malignant pleural effusion since the fall. The pleural effusion is the hardest part for her since it affects her breathing and her ability to lie down flat which in turn, affects her sleep. She has not had a full night of interrupted sleep in a long time.
We are crossing fingers, hoping and praying hard that Ibrance works for her. She has gone through four IV chemos with no success. She was on hormonal for the first three years at Stage IV and it did great until it didn't (you know how that is).
All the love to you all!
xo, Sarah
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Hi Sarah,
Thanks for joining us, and hope the new combo is the trick that stops the cancer in its tracks. I believe most of the side effects for us here have been pretty tolerable, and hopefully that will be the same for your mother. Keep us posted. Has she been able to have any treatment for the pleural effusion? I don't have any experience with it, but I know people have had it drained for relief and if it continues to be a recurrent problem, they can do a procedure called pleurodesis that permanently prevents the build up of fluid.
You're mom is lucky to have a caring daughter like you!
Joanne
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Sarah, thank you for joining us on behalf of your mother. Hopefully Ibrance will be the relief she needs. Feel free to jump in and ask questions when you need to. Myra.
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Stefajoy I think I just completed my fourth cycle. So far, so good. I worry much more about the drug being effective than I do about the low counts. Working so far but every month when I get my markers checked I get major anxiety. I think in the future more drugs will be paired with Ibrance which will provide many more options for us all.
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Wow, we have a very active thread going here. Love it! I'm sitting here in a camp chair with a blanket enjoying a hot cup of coffee. That said, I had a rough night! Woke up in pretty awful pain a little after midnight. Still aching now. Not sure if it was the sleeping arrangement or the Xgeva or the week off pain cycle I've been having. My husband brought a base for our air mattress so that I don't have to bend and all. It's actually just like a normal bed, so not sure why I had such an awful time. Either way, it's pretty intense. I may have to go wine tasting today if this keeps up!
Stefajoy, that's funny you mention El Capitan, we love going there. But this time, we are at Flying Flags in Beulton right outside Solvang.
Dorothy, I had a infrared session yesterday morning and 2 more scheduled for next week before I leave for Alaska. I missed about a week because too much going on, so want to make sure I keep it up in case it helps. I usually feel a little more energetic afterwards and my counts, although still very low, were better than they were the last couple times. We shall see.
Myra, hope your pain relents soon! If not, may be time to get it checked out. Do you have some pharmaceuticals to help with that? Sure hope so. Pain zaps the joy out of everything!
Enjoy your weekend everyone!
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Walked to the farmer's market and then back up our hill with over flowing bags. Dan dan noodles for lunch, and now a full afternoon of coding. I have taken my first two pills after dinner which is the most convenient time for me. What meal are you folks taking them with? Again, had a wave of nausea for about a half hour about a half hour after taking the pill, but it is not accompanied by that "vomit-feel" so not too bad. Tonight we are taking our daughter and son-in-law out to dinner to celebrate his promotion at work. Family dinner have slipped a bit, and it is time to reactivate them. Usually I made family dinner, but we thought a promotion was a good excuse to have someone else cook and clean.
Romansma, sorry that you had pain overnight. Lack of sleep with pain is just one of the things that I hate the most. Wine tasting could be the solution, no doubt. Did you get marshmallows on the fire?
*susan*
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Dang, hope! So sorry about your pain. You seem to be able to stay upbeat, regardless. You're amazing. Will you have a chance to get some answers about your pain soon? It's bad enough we have to deal with all the side effects, worries and yucky procedures, but pain is just the last straw. I can imagine you sitting on that camp chair under the trees, and it does make me smile. But the pain is just not fair.
Myra, this goes for you, too. I really hope you two can feel better. What do you take that helps, if anything?
I passed out last night at the restaurant where we were eating last night. Had a great meal, felt like I had to use the restroom, then felt slightly dizzy. Told husband I need him to take me to the bathroom, we got up, and the next thing I knew I was on the ground looking up at my husband and a stranger (who happened to be a nice guy from a nearby table.) They helped me up, and after a few steps I guess I passed out again. Geez.
This has happened to me a few times before in the last few years,but I am really surprised it happened this time because always in the past it was after a meal with alcohol. I thought having wine pushed my system out of whack because I have very low blood pressure, and on a warm night it can be the trigger. So I gave up drinking. Now I'm really kind of nervous because I can't predict when it will happen. It's only once a year or so, but still. Not fun!! Apparently it's a thing, and it has a name. Postprandial syncope.
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Sandilee, that is so scary! I almost passed out with low counts and Xgeva shot. Thank goodness there were people to catch you. Feel better. My pain is very odd. I can walk really well, without pain. It seems to be coming down from my side to the top of my hip and sometimes when I get up. It truly feels it is referred pain from a muscle spasm in my back. When I walk around it is fine, it is when I sit too long. Very frustrating.
Last weekend in NYC, I was fine, walked about 20 blocks each day. I do get dizzy at the end of the cycle. If I get up too fast, my legs feel like mud and I cant move them. I have to breath a minute and get my bearings.
Enjoy your weekend all. Myra
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Hope,
Thank you for your response. Now I am thinking that Ibrance will make the AI work better, as it gets rid of whatever was blocking the AI in the first place! Good luck to you and everyone in this thread!!!
Hugs,
Brenda
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Romansma, good for you, for going camping in spite of everything, and may you have a better night tonight.
I take my Ibrance with lunch, Susan. I also have that wave of nausea 30 or 45 minutes after, but not every time. I prefer lunchtime since sometimes I am still trying to cobble together eight hours of sleep in the morning; and I have some evening classes, so I don't want to risk nausea or stomach upset in the evening.
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Hope and Myra so sorry your pain continues. Hoping you can figure it our and get some relief. Have you ever done acupuncture?
Hope I went to the infra Red sauna today. Spent 45 minutes. Loved it. Not sure I loved how hot I was but loved how I felt afterwards. Beautiful private room with aromatherapy and relaxing music. Am going to go next week again and also get a foot massage. Wish i could go more frequently but difficult with my work schedule.
Sandilee so scary. Hope you are feeling better today. I never heard of that condition. Is there nothing to take to prevent that?
My third day between cycles. Felt really good today and had a good amount of energy which is encouraging.
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Hi Pearlady, i am new to this site. Am offered ibrance/femara or possibly xeloda as next treatment. Do you or anyone else have any insights? Kind of afraid of the new med, but did ok on Affinitor (also took in the evening - no nausea) and hoping to hold off chemo as long as possible as well as read somegood results for ibrance (p.r. maybe??). Thanks.
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Dorothy, I want to try the sauna next week. Glad you enjoyed it. Just finished my third cycle last nite. Tiredness so much better. DH and I cleaned closets all day yesterday. Purging felt great. Really good Feng Shui. It is amazing just how much we buy and don't use! 3 large bags to Goodwill.....Hugs.....Myra.
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Sandilee, that's pretty scary!
Myra, my pain this weekend is partly spasms in my lower back. Oxy isn't touching it. Hard to sit, walk, wth! Almost went home yesterday, but decided to grin and bear it another night. I slept a bit better, mostly because I doubled up on pain meds. I am thinking this is a combo of low counts and Xgeva. I think we need to be getting Xgeva injections at a better point in the blood count cycle. The spasms are like what I'd get on Neulasta. Anyway, hopefully, they will relent in the next day or tow, or I will be calling MO. I'm thinking a muscle relaxer might help......and definitely a little scheduling next cycle to prevent this. Tough weekend for pain!
Dorothy, I've been wanting to do the foot massage too! I don't get regular massage anymore because it hurts too much now, but my feet would be sooooooo nice! Think I may treat myself this week!
Sunday fun day. Be good to yourself, friends!
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How has ibrance been? Were you offered anything else as treatment?
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Sandilee, sorry about your frightening incident, I am thinking it is not connected to the Ibrance. I have a friend who has to cook low sodium meals for her husband (most of us have too much salt and they are adding more and more to packaged foods) so she cooks low sodium for her family, but the son passed out at school and they found he needed more salt in his diet - I wonder if it's an issue with salt). Also, I heard that we need to get iodized salt (since low iodine can be a factor in cancer). My mother once passed out due to low magnesium also - so it could be that you need magnesium or something else - did you have the blood checked magnesium, potassium, sodium, etc? Hope the docs can figure this out for you.
Romansma, sorry about your back pain, hopefully the muscle relaxer will help. You may have to rest which is hard to do with kids. I have been frustrated with sharp rib pain, must be a broken rib - and was done in after a big foodshopping day yesterday (never enough food here with very large boys to feed!). Hard to rest with so much to do, but sometimes you have to give in.
Just saw something saying Prilosec can cause heart attacks, so I am now sticking with just Zantac and spacing it far from the Ibrance. So far my reflux has been much better than last month (keeping my fingers crossed) and I wonder if it is due to giving up tea (I'm dying for a cup of tea, though, since I am a tea addict)!.
Susan, I have not had nausea with Ibrance except for a couple of mornings, both around 4 a.m., and i am on my 4th cycle. I take it with lunch (first eat 1/2 the lunch, then take the ibrance/letrozole, then eat the 2nd half of the lunch). It is listed as a possible Ibrance side effect, but hopefully it will not be often for you since it doesn't seem to be a problem for most people most of the time.
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Thanks for your sympathy around my fainting episode, everyone. I do want to make it clear that this is not medicine related at all. This has happened to me before I was on Ibrance, or any cancer med, actually. My blood pressure is low normally, certain things that may push it down further- dehydration, alcohol, eating a meal in a warm room can be a trigger. My oncologist said, "eat more salt," Holly, so there may be something to that. I don't usually eat processed foods or add a lot of salt to things, but I do eat out fairly often, and we all know how restaurants load up on salt and fat, to make things tasty. Honestly, I think keeping extra well-hydrated is probably the answer, if there is one. I do have my magnesium, sodium, potassium levels checked regularly in my blood work and they are all fine.
I'm kind of wondering about Xgeva and Ibrance together. Most of us are on some kind of bone strengthener, often Xgeva. One of the websites that looks at drug interactions has a flag on Xgeva when used with Ibrance. I don't know if the site is reliable or not, and I've not seen any other indication that they are not compatible. But some of your experiences do make me think. Although the types of problems mentioned don't seem to be the kinds of problems anyone has experienced. My doc certainly hasn't said anything about it.
http://www.drugs.com/drug-interactions/ibrance-with-xgeva-3602-17088-3238-14902.html
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I am convinced there is some interaction between Xgeva and Ibrance, Sandilee. After this weekend of intense muscle spasms, pain in my lower back, hips, and pelvis. I think it coincides with my cyclical pain flares. I am a little better today, so far. But still hurting. We came home early this morning.
Myra, does your pain seem to be the week or so after Xgeva? Are your blood counts at their lowest when you get the injection. I wonder if it was given at a different poin in the cycle if it would make a difference? I could hardly walk or sit yesterday!
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My son graduating from high school and my daughter graduating from middle school. Feeling blessed.
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I have a big favor to ask. We are going to find out about our insurance appeal tomorrow. If they are negative, my husband would like to have a little ammo in his pocket regarding other insurance companies. We'll need to prove they are being irrational in comparison to others. If you dont mind, would you please tell me what insurance company you are with that is covering Ibrance as a second, third or even fourth line treatment. Much much appreciated if you can help.
Thanks!
Stefanie
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Hope, I truly believe mine are spasms, but nowhere as bad as yours. They do not kee me up at night. I sleep fine. My counts are low now at the end of this cycle. I was doused to get xgeva tomorrow but am going to reschedule to the end of the week. I can definetly feel the difference. This spasm comes and goes, but like you said, the Vicodin does not help. I will be asking for a muscle relaxer too. Sometimes they start fromy neck and go all the way to my tush.
Stefanjoy congrats on all ur wonderful grads beautiful pictures
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Beautiful kids, Stefajoy! Will your son be living away from home for college? That's a hard transition for moms, I remember, although you get to have more one-on-one time with kid #2, which has its own rewards.
My husband's company self-insures, although they use Anthem/Blue Cross as their administrator- so everything goes through Anthem. I get the drug though CVS Specialty because that's the pharmacy my insurance uses.
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Hello ladies
I will be taking ibrance with faslodex. I have an HMO and there wasn't an issue with coverage. JHL The results of the clinical trial pairing faslodex with ibrance came out June 1st. Maybe that will help with your appeal? I think it was called PALOMA 3
The side effects I had on aromasin/afinitor were too much to continue on that combo. I received my first faslodex a week ago and I have the ibrance but haven't started it yet. I'm starting on the lowest dose- 75mg. I'm hesitant to start Ibrance until next weekend after the school year ends in case I have vomiting or diarrhea.
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I have to say my insurance company has not balked at anything. I think it might be how your company sets the policy up. I have United Health Care through JCPenney. The only problem I have had is for a short time (<month) my hospital system went out of network. We have 3 major hospital systems. It is a moot point. I would have stayed with Dr Bellil regardless, but luckily it wasn't a problem
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I am on ibrancr and letrazole. I have been blessed with not so bad side effects. I am in my fifth round and finding that I have a great deal of more pain in my bones and joints as time goes on. And especially that third week of ibrance. Is it ok to use oxycodone for pain relief
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I am also experiencing excessive tearing. Is this a side effect? It doesn't seem to be allergies.
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I've been taking ibrance and letrazole for five months. Fatigue side effect and by be and join pain. Insomnia. And dreaming talking and singing in my sleep
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Hi Deb, Oxy is fine with the combo. There's no drug interactions to worry about. Hope you get relief.
Stef, love the family photos. Beautiful kids. I have two at similar ages. My daughter is off to college in August and my son will be entering 8th grade. I'm taking the combo but it's first line for me. My insurer is Independence Blue Cross if it helps. Good luck! I really think they'll come through for you.
I hope everyone gets the pain relief they deserve. It sure can be a bitch.
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Hi intothewoods and Deb20,
Deb20, I had some tearing in my eyes on my first cycle of 125mgs, but I don't get any on 100gms. The "singing in my sleep" sounds like a vocal version of some of my dreaming. Are you still on 125 mgs without any blood count issues? Have you had any scans that show the drug is working for you? I don't think any of us on the thread so far have been on the drug that long. I'd love to know how it's been working for your mets.
intothewoods-Good luck to you. Interesting that your doc is starting you on a low dose. I like the way doctors are beginning to individualize this drug depending on their patient's issues. I hope it works well for you. I haven't noticed any problems at all with the 100mgs, so far.
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Stef,
I have Harvard Pilgrim in Massachusetts. This is a non-profit health insurance company, well rated nationally. I am not sure if I am considered to be on my second or third line or fourth line of treatment. I did aromasin as a Stage II patient, and after progression, they added Faslodex to that mix. I dropped the aromasin almost 3 years later due to side effects. Now, I am on Ibrance with letrozole. Approval took 4 business days, but I didn't get the Ibrance for another week due to a snafu.
I have no idea if my oncologist's office had to fight for me or not. I plan to ask at my next appointment.
Hope this helps, and those pictures are wonderful!!!!
*susan*
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I haven't been posting for awhile, but will share my experiences so far with Ibrance/Letrozole. My first two cycles I was on 125mg for three weeks, and both times I had to be off for 2 weeks because my counts took awhile to recover. So, on the third month, we tried 100mg. I was on it for only a week, then got a urinary tract infection (first one in my life!), which quickly went to a kidney infection, then into my blood. I was septic!
This happened just about 4 weeks ago. My fever went up to 104.5, and nearly that high, several times in one week, I was vomiting, blacking out, and chilling. I had to be hospitalized for four nights, got neupogene to increase my wbc counts, tried a few different antibiotics, and then got better! I lost 6 or 7 pounds in that one week, and felt very weak for the first two weeks home. I am doing better now, but still not 100%. I just started back on Ibrance/Letrozole last Tuesday.
The good news is that I had a PET scan last week, and the two spots that I have, one in my right iliac bone, and one in my spine, have both shrunk slightly. That is all I needed to know! If it's working, then I will just deal with the fatigue, and increased likelihood of infections. (Although, I seriously don't EVER want to have a week like that again!!) I learned my lesson, that I need to go in to the hospital right away if I have a fever while on these drugs. I assumed I had a bug that my two boys had, and that I would get better in a couple of days, so I waited it out longer than I should have, and that infection travelled fast!! I am fortunate that we caught it in time, honestly.
I am hoping that my body will like the 100 mg dose a little better, and that my counts will be able to tolerate it better too, especially now that I know they are effective drugs for me. I am trying to eat a very healthy diet, and I continue to run and walk. I think eating right and exercising are powerful tools, and something I can control.
I will continue to watch this thread, and am cheering for, and praying for, each of you!
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Sandilee, I agree it must be a dehydration issue if the other counts are OK, especially with the weather getting hotter. An aunt passed out at a big family cookout last year and had to be rushed to the hospital - she was sitting out in the sun - they found that it was dehydration. I think you should go to the emergency room if it happens again, they should be able to at least let you know the cause so you can hopefully prevent it happening again. Also that is interesting about the Xgeva - I am not on the Xgeva but have been on Zumeta every month for a year (now every 3 mos) - not sure if that's a similar drug, but it has not given me the muscle spasms.
Stef, I have BCBS (HMO) of MA, and I am taking it after failing letrozole alone, and failing Faslodex alone. Good luck tomorrow.
Intothewood, it is great to know you are getting Ibrance with Faslodex, this may be the next step for some of us when we need to move to a new combo. Please let us know how it is working for you, and good luck!
Springlakegirl, that sounds scary, glad you recovered, and thanks for the warning, I will keep that in mind since I have had a fever on this once, but nothing like yours.
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intothewoods, I am glad you had no insurance issues for coverage of Ibrance with Faslodex. Good luck on your new med!
Stefajoy, I hope you receive good news on your appeal.
I submitted my appeal last week. I included the info about PALOMA-3. My company is self-insured (with CVS/Caremark as the third-party administrator), which means they are not bound by some of the state regulations about coverage of non-FDA approved drugs. They have more flexibility to deny. I don't think a true insurance company can deny coverage at this point given the published information out there. Waiting at this point. Has been nearly two months of waiting without taking the drug. My oncologist was able to get me a free month from Pfizer that is set to arrive on Tuesday. However, I don't want to bother starting a medication if I have to stop it due to insurance denial.
For those of you waiting to hear about insurance coverage, are you taking the drug in the meantime?
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JFL - I took the 21 month free trial from Pfizer. On my fourth week, the "off" on. Praying Blue Shield of Ca stop being dickheads by Wednesday.
Thank you all for your insurance infos. Good to have.
JJski62, , my son is going to UC Santa Cruz in September. Your daughter?
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Stefajoy beautiful family! Thanks for sharing.
I am getting Zometa instead of Xgeva and do not have any pain. I've asked my onc about switching to Xgeva and he claims no additional benefit and that if I'm painfree, a change is not recommended.
Intothewood it is great to hear that you are geting the Ibrance with Faslodex. I'm sure that will be next for me as I'm concerned since I had Femara for almost 5 years it won't be as effective. My onc agrees with what many here have said that in combo with the Ibrance he is thinking that it will work agai since I had success in the past. If not, its good to know there won't be getting any issues with getting Faslodex approved.
I have no nausea and really no pain from the Ibrance. Had a bit of nausea when I first started, but after second cycle have not had. My worst issue is not being able to sleep well. I think that's more the cause of tiredness for me than anything else. Sometimes herbal remedies help and sometimes no. Other than that no terrible issues and the tiredness has not affected by ability to work a full day.
Hope I am really looking foreward to the foot massage . I've had them before and it seems to help your entire body feel better. Also, when I had terrible pain issues with the neuropathy, the bio-mat really seemed to help.
Have a great day everyone.
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thanks so much. I love this site
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Hi ladies, just made my first post in the bone mets thread and wanted to pop in here. I have been lurking and reading since April when I found out that my stage 2 ILC is now stage 4 with widespread bone mets. I just finished my second cycle of Ibrance, dose was reduced to 100mg for my second cycle due to low counts. So far, fatigue has been my worst side effect. My onc is very excited about this drug. My tumor markers dropped 50 points after the first cycle, I don't know if that's significant but the doctor was pleased. I have learned so much already from you ladies and hope to learn even more
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Lynnwood 50 points is great. My tumor markers dropped initally and then went up about 50 points and have come back down again to slightly below when I started. My onc is also excited about Ibrance and says that he doesn't anticipate markers dropping rapidly and that sometimes hormonals take longer to work. Hope yours continue to drop.
Are you also getting Femara?
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I'm glad 50 points is good. Before I started treatment my onc told me to expect the numbers to rise before going down, so I was surprised to see the decrease. I am taking Femara and Xgeva as well. I took Femara during my initial treatment for stage 2 in 2008, but my doctor didn't hesitate to use it again. I will have another scan in July. I am off work now on short term disability and hoping to return to work. I am a nurse which is a very physical job but my doctor seems to think it's possible. I just want to get back into a somewhat normal routine, being idle is not good for me, it gives me too much time to think and worry. Still having trouble wrapping my head around this.
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just back from Onc.
CEA markers up. He says it could be because I was off meds for a month, or it's a flare, or it could be caused by the inflammation due to recent surgery. The other marker (the bc specific one) hasn't changed at all. I don't know what any of it really means.
WBC 2200, lowered my Ibrance to 100 for second cycle. Seems to be a very popular thing to do. His PA asked if I could wait a week to restart cycle while we try to get more info about my dickhead insurance, and he said NO WAY, no waiting, even a week. So, ya.... Guess he is anti "time off".
Also, I may be the only bone mets girl I know not on a Biophosphates. I had a horrible ONJ incident year one. I should check the bone mets thread on that. Makes me a little nervous.
I asked him about radiation. He said he won't make that decision until next PET (end of summer).
Lynnwood, sorry you have to join us here in the MBC thread. You must be on Ibrance as a first line treatment, so I think that's a good thing. Looks positive so far. Good luck.
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stefanjoy still no response? That is ridiculous!! How are u going to continue with no insurance? My markers were mixed also. We will see again on Friday Myra.
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Hello everyone!
I just popped the first pill tonight- decided not to wait. Thanks for all the good wishes and right back at you all. I hope everyone avoids insurance dick-headedness and get the treatment they need.
I appreciate all the info shared and Sandilee, when you said you had no problems at all with 100 mg I decided to go for it and start tonight.
Sleep well my friends
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Just got a call from MO office. Ugh, PET scan scheduled for July 2nd after almost 4 cycles. Let the Scanxiety begin! Myra.
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Oh,Myra. I know what you mean. It's still a couple of weeks away, though, so try not to think about it yet. Your meds have a little longer to show their stuff. It will feel good to have some confirmation that they are helping, though. Crossing my fingers for you, and I'm sure I'll be right behind.
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Myra, I know you have been waiting. The not knowing if it's working is hard. It'll feel good to have answers soon. I'm only on month one, so I get no answers until the end of summer. My turn to wait.
So, I have a question. I am at the end of the fourth week (Ibrance free) of first cycle. I was expecting to feel better this week, but I don't. still fstigued, still kind of naucious. Is that what is happening to others too? I'm bummed, as I could really use some energy right about now.
Stefanie
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Stefajoy I was naucious during my first and second cycle only. Since then not at all. Are you taking the Ibrance with a full meal? I find that helps tremendously. Also for me, works best to take with dinner.
I also take lots of supplements to help with my counts and I think that they also help with energy. My biggest issue is not sleeping well. I'm wondering if that's from the Ibrance/Femara. Been trying different herbal supplements rather than taking sleeping pills. Does anyone else have trouble sleeping and/or staying asleep?
Myra I know the feeling. I get my markers taken with each cycle and am in total stress mode until I get the results. Over the years my tumor markers have been totally reliable, so I'm never too surprised by scans.
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Stefajoy, I am also on my "off"" week. Just finished second cycle. While I have not had any nausea, I am exhausted! I went out to lunch with a friend today and couldn't wait to get home and lay down. I hope this improves, as I am hoping to go back to work..at this point it's going to be very hard. Myra, I will also be having my first scan next month. I will be a nervous wreck waiting to see if this treatment is working. My heart pounds just thinking about it, but if the results are good, I will be so relieved. I will be taking my anxiety meds for sure
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pearlady, can you recommend some good supplements.?
I also don't sleep well. I take a lot of Ambien, but even then I only sleep a few hours. Could also be why I am tired all of the time. I do think insomnia is one of the side effects.
Stefanie
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Thanks for the warm welcome. Ever since my mom took a turn for the worst last fall, this site has been such a great source on so many levels.
Her wbc was good last week so they will continue on another cycle. Although she hasn't been doing well physically, a lot of pain & fatigue, which is discouraging. Hoping that it is mostly side effects and not the cancer taking it's toll.
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My fatigue and malaise is 100% better today, it is my third day off. Stefajoy,watch the ambien, it could have the reverse effect on you. It is a really funky drug. Myra.
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Stefajoy I agree with Myra. I used to take Ambien or Lunesta, which is said to be a safer sleep aid than Ambien. Would only take 3 - 4 pills a month at most. I had the reverse effect from the Lunesta in that it started to keep me awake. My onc said that sometimes happens, but I was surprised since I wasn't abusing it. I took myself off of Ambien as I've known people that have had issues with sleepwalking and my onc also recommended not taking Ambien. For the insomnia I take some herbal supplements as follows: Deep Sleep, De-Stress, Sedalin and PhenTropic. I sometimes add 20Mg Melatonin. I usually don't take them all every night, but always take two Deep Sleep and sometimes add Melatonin and one other thing. They do help somewhat. I also stopped taking Ativan. There have been studies linking it and Zantac with Alzheimers. I laughed to my onc and said with my luck I'll beat breast cancer and end up with Dementa.
I take many supplements as recommended by my onc and by the holistic pharmacist. But I think that the main supplements for energy and immune building are the following: Maitake D Fraction Drops (three doses daily), Shitake (2 daily), Coriolus (turkey tail mushroom) (2 at each meal), Chagra (2 daily), Meriva by Thorne (2 daily). Also Astragalus for building white blood cells and Ashwaghanda for Platelets. There is a lot of information also on the discussion board for Building our Immune Systems With Stage IV and BC.
Here's hoping for a sleep filled night.
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Lynwood and Stef- are you on the 125mgs or the 100s? I had fatigue with the 125s but not on the lowered dose, so far. I also added vitamin B12 to my regimen, along with my d3 and calcium. It's supposed to help with red blood cells, which can cause fatigue if they go too low.
For sleep, 5mgs of melatonin do it for me.
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Sandilee I am on the 100 mg. I felt much less fatigue on the lower dose. I am on my 2nd day off and only felt tired the last 3 days. I just started taking a B complex vitamin this week, so I am hoping it works. My counts came up significantly on my last break, my onc did weekly blood work the first 2 cycles and now I have "graduated" to every 10 days.
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18 days on Ibrance 100 mg. and my white count has dived to 1.3. So I still feel well but I am wondering if I will be one of the first moved down to 75 mg. Unfortunately, if that does not work then I am not a candidate for anymore Ibrance/Letrozole. I am being really really careful about avoiding highly public environments that might make it easy to pick up an infection. My tumor markers remain low at 7. Still I really really want to make this combination a long term thing for me. Carolyn from Music City
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Stefajoy you aren't the only one not on biophosphates I'm not and probably never will be. I had jaw surgery to remove part a my mandible almost a year ago and they feel it isn't worth the risk to take one of them plus eventually they may need to do further surgery replacing the titanium plate with bone and the biophosphates can cause a problem for surgery. I am on my third cycle with Ibance I have taken letrozole for a year now with good results. My only problem has been low white counts but I'm able to work full time and function like normal. I'm the only one in an office of about 20 people that hasnt missed work for illness can't figure that one out Lol. I too have sleep issues ever since surgery last July I sleep 2 or 3 hours then I wake up and have to switch positions to get comfortable again. I just bought somnapure sleep aid there have been alot of ads for it so I figured I would try it out
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thank you all for the great feedback regarding sleep. No more Ambien for me.
I'm actually happy to be dropping to 100 msg Ibrance. Sounds like it could help with the SEs.
My Onc has consistently told me not to take calcium. He says I get enough in my food, and I guess there is such a thing as too much. Sandilee, that's worth checking into if you haven't already. But B12 and D3 are good ideas. Melatonin also.
Duck, sorry about your ONJ. I've never met anyone else who knows the horror of it like I do.
I love this group! This is the best support I've had in years.
Stefanie
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Mine was actually a tumor on my mandible that was mets from BC but I definitely want to avoid ONJ
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Sleep is so so important!!!
My two cents on sleep aids: I once had a dr prescribe gabapentin/neurontin off label as a sleep aide. It's a really clean drug that does not act adversely with others. Same dr also suggested benedryl for occasional help when my insurance changed. I have ativan for occasional use. I have even used it every night for a few months and never had a problem stopping
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Stefajoy,
I am another one - I developed ONJ this year - left upper jaw. It is at bay right now, but they had to take a small piece of bone tissue out. I have always taken care of my teeth, but one rouge cavity under an old crown started the problem. No biphosphonates for me too, inc Xgeva which is not technically a biphosphonate.
I, too, have insomnia probs. Can't say it's from the Ibrance because I had it before I started.If I take one ambien for 2 nights in a row, I "get hooked" and need it every night. If I absolutely need to be wide awake the following day, I will take clonazepam but that's about it.
Best wishes, Vivian
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Hi all,
I am just checking in. I am finishing up cycle 5 - the first one at 100mg. Although, I had a few issues in the beginning ( not sure why) this whole cycle has been very easy. No fatigue to speak of at all and only two days left.
I am seeing my MO next week and she wants me to switch to Anastozole from Tamoxifen. I think I am going to delay it a couple of months as I am finally feeling pretty good right now.
Stefajoy - mt naturopath
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finish my sentence... My naturopath has be take K/D liquid instead in D3 and like you MO he thinks you can get calcium from food.
Good luck to all those just starting..
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My primary care oncologist recommended a magnesium product for sleep - it works for me - it is called Calm - it is a powder you mix with water and it can be purchased in a health food store - like Whole Foods, or Amazon. I just take the basic dose, two teaspoons in a little warm water about an hour before I go to bed. She says it is also generally good as many of the drugs we take deplete magnesium. Susie
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Thanks for the concern about the calcium, Stefani. My onc prescribed a calcium/ magnesium combo with the Xgeva, which can lower your calcium levels to dangerous levels. This is in their safety recommendations.
"Pre-existing hypocalcemia must be corrected prior to initiating therapy with XGEVA® (denosumab). XGEVA® can cause severe symptomatic hypocalcemia, and fatal cases have been reported. Monitor calcium levels and administer calcium, magnesium, and vitamin D as necessary. Monitor levels more frequently when XGEVA® is administered with other drugs that can also lower calcium levels. Advise patients to contact a healthcare professional for symptoms of hypocalcemia."
They always measure my calcium levels before giving me the shot. One time it was barely high enough to get it. I think the fact that I also had parathyroid surgery makes it especially important for me.
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My onc has me take Calcium 600mg and Vitamin D 400 units twice a day, but told me to double the dose on the day I get my Xgeva shot. She said Xgeva really depleats your calcium
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Sleep is amazingly important I agree. Has anyone besides me tried meditation instead of drugs? I use meditation every night to make me drift off to sleep. The name of the meditation I am using now is "healing meditation" by Kelly Howell. It is 30 minutes and it allows you to get your mind to a quiet place. It is easily found on iTunes. I just did not want to add another drug to my list of too many! Hope that helps.
Have a great day all. Myra.
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Sorry, I forgot....Sandilee my mother also had thyroid/parathyroid surgery and has very miserable osteoporosis because she was not told to take enough calcium. The doctor (during her last break) told us you could see thru her bones!
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Hi ladies,
I hope all of you are feeling good today. Wishing all who are having upcoming scans good results and minimal scanxiety while waiting.
Stef, my daughter is going to Bucknell University in PA. This is my first so the whole experience is new to me. It will be a busy summer.
My blood work after being a week off my first cycle (125 dose) showed my WBC and ANC came back up but my ALC (absolute lymphocytes) didn't yet. It was already low as they took a dip after spine rads in December. Anyway, I'm not starting up again until after vacation since I'm traveling out of the country. Onc is putting me on the 100 dose. I'll do blood work as soon as I get back and go from there.
Any tips on raising specifically ALC with supplements? I just started taking astragalus so we'll see if that helps. I already take vitamin c and iron and the calcium. My Onc does check my calcium levels before xgeva shots too.
Joanne
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Myra I forgot about Kelly Howell. I used to do her guided meditations for healing when I was first diagnosed. Agree that she is wonderful. I am going to get more of her meditations from Itunes. I do meditate at night and also listen to healing music. The group 2002 has some very good music for meditation and healing. I've gotten most of their music from Itunes also.
For the blood counts you can take Shark Liver Oil twice a day after meals. Also Blackstrap Molasses mixed with water is suppossed to help both red and white in addition to Maitake D Fraction drops.
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Pearlady, do you buy your supplements online? I was wondering the best place to purchase. Thanks for the help! Your information is invaluable. I don't know what I'd do if I didn't have this site.
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Hello All,
Is anyone getting Prolia injections? My MO has recommended this as I am osteopenic, probably due to long term use of arimidex. I would like to hear from anyone who has tried these injections or is currently on Prolia. Previously I was on Fosamax for about 10 years.
Kathy
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Hi Kathy,
Prolia is Denosumab, the same drug as Xgeva. Many of us who have bone mets are on Xgeva, as it is a more frequent and stronger dose of Denosumab than Prolia. Prolia is prescribed for osteoporosis, not mets, and is given once every six months.
I've been taking Denosumab (Xgeva) for the last four years. The first two years I got the shot once a month. After two years, my onc dropped me down to quarterly, where I am now. I have no side effects from the medication. Some women do have some fatigue the day or so after the shots. I imagine the side effects when getting the drug may be similar, but probably less, since the dose is smaller.
The worrisome thing about the drug is the possibility of ONJ, but that happens to a very small number of patients, and usually after taking the drug longer than two years. Your doctor may have more information about the statistics regarding Prolia. It's a much lower dose, though, so I imagine ONJ would be rare.
Prolia- Dosage is 60mgs every six months vs. Xgeva @ 120mgs every month. Quite a difference.
Xgeva has really helped me a lot. Filled in my broken bones after radiation and helped with pain. I also think it makes the bones a less hospitable place for cancer to grow, and my bone mets have been stable for the 4 years on the drug.
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Hello all,
Dropping in to add some info to the data pool here. I've been benched until my numbers rebound. So no more Ibrance for me (had three rounds at 125mg) for the time being. My ANC hung out at around .6 the entire time and my onc isn't willing to push it any further, especially since now my red counts are in the tank too.
I have a scan scheduled so let the scanxiety commence! Not looking forward to that awful wait for results but it will be good to know if there's been any change for me. If the Ibrance looks like it's working or holding me steady my onc says he'll continue the med at the 100mg dosage. We're also double checking my total estrogen levels which came back uncomfortably high last go round. Onc says he's never seen levels like mine in someone who has had ovaries removed. And I don't even look at dairy anymore, or soy for that matter... just in case. Very little meat. Have no idea what's going on with that. Weird.
Hope everyone is making it through the week ok and wishing good results for us all.
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Thanks for the info, i am trying to anticipate what if any side effects there might be with Prolia.
After 22 years of BC , (stage 1 , 4 local occurrences) I am trying to adjust to life with this new DX and become more informed on various drugs,in order to ask better questions from my MO. Sometimes I wakeup and think this didn't happen, but sigh, it did.
Another question.
Has anyone done genetic testing?
Tomorrow, I see a genetics counselor and will decide on the testing
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Hi Max_otto, my mom just had genetic testing done. Her first bout with bc was in 1994 and she had the brca testing done shortly after -- both came back negative.
We met with a genetic counselor who suggested she take it again since there have been advances in the testing since then. So she retook it (it tested for both brca genes as well as 15 common others). They all came back negative again.
Her initial diagnosis, she was 37. My cousin was also diagnosed with bc this year at 37. Due to not having anything come up but having family history, I have a familial risk which our genetic counselor says puts me from the average 12% to 28%.
My mom is now 4 years into Stage IV, did great on hormonal therapy for three years, has been doing pretty bad since the fall. Hoping Ibrance is the winner after a lot of disappointments. This may be her last option.
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Sarah,
What you have related is certainly something to weigh in the balance of deciding whether to go ahead with the testing. Even if everything comes back negative, it still may be useful for my daughter. Like you she has family history, both her grandmothers had BC and her first cousin passed away from BC in her early forties.
Thanks for sharing this, at least I won't have any unrealistic expectations.
On your mom, I hope for the best, she has a wonderful daughter.
Kathy
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Max_otto Hi Kathy, It was good for us to get answers, even if the answer was "there's no known gene mutation." They were able to assess risk even when that was the answer.
It may be really good for you to meet with the genetic counselor just to talk it through. I didn't know what to expect and she was super helpful and explained how it all works and how genetics play a part. I mean, as you know and we have seen, breast cancer has no rhyme or reason sometimes. Lots of people with low risk get it and lots who are high risk don't. But what is good about the testing is you can get a clearer picture of the risk in the family and that can help with being more proactive in the future. For example, since my risk is higher, I can qualify to get an MRI earlier than most and have screenings more often than the average woman.
Something that the genetic counselor told me too was that people are different and some may want answers and some don't want to know. She has patients whose moms tested positive for BRCA, so they had a 50/50 chance of carrying that gene mutation, and the patients decide to not get tested. It's definitely an individual decision. For me, I am a "information please!" type of person, so testing was a good path I think.
Thanks for the kind words! Wishing you the very best and that Ibrance does wonders.
xo,
Sarah
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Hi All,
I'm thinking about starting Ibrance. Not crazy about the low white count and I see many of you have experienced that. Been on Faslodex for 4 years now. Completed spine fusion surgery a year ago due to mets that were in my spine and ribs. That recovery took a long time. Then had a bad reaction to dexamethasone. Trying to weigh the risks and benefits right now. Thoughts?
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Hi again
Just had PALB2 genetic testing. Has anyone else had that test?
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I'm asking my oncologist about Ibrance today. Will report back.
Tina
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Hope, have not seen u in several days. I am hoping you are doing ok. Myra.
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Tina, Looking forward to hearing the doctor's thoughts on Ibrance and your treatment plan.
I have now taken Ibrance for 6 days and so far side effects don't seem overwhelming. My scalp is tingling but no hair loss, and my gums are tender. My temperature has stayed well within the normal range, varying about 1.5 degrees. I have continued to take the drug during dinner since that is really the only substantial meal I eat on any given day. I have had a few episodes of feeling "off" but nothing that is definable.
*susan*
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Hi Lindalou, welcome! I had spinal decompression and fusion last fall and I know what you mean by long recovery. I'm still recovering but I think I would have been paralyzed if I didn't have the surgery and it certainly took care of the pain issues. I think generally people here are coping well with side effects, the biggest being the low WBC but doctors seem to be tweaking the dosage or delaying starts to keep it manageable. Let us know what your Onc says.
Tina, good luck with your appointment today.
Hope, wondering how you're doing too. Hopefully you are just busy packing for your trip.
Wishing a pain free day to everyone.
Joanne
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susan- your SEs sound a lot like mine on the 125. I had that weird itchy scalp, but it went away and didn't come back on the 100mgs. When do you go in for your blood work?
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Starting my fifth cycle tonight. I think I'm the only one still taking the 125. Have not really had much of an issue with low counts lately, but I attribute that to the multitude of supplements that I am taking. Lately I have been quite diligent with the supplements and also doing the blackstrap molasses which is said to be good for red and white.
Initially I had some issues with mild nausea, but not after the second cycle. Also had the scalp tingling in the beginning, but not lately. My biggest issue continues to be difficulty sleeping. Have some stiffness when I get up in the morning or after sitting for a while from the Femara, which I had previously when I was taking it. Even the minor side effects I've had are nothing compared to what I've had on chemo in the past. My energy remains pretty good. Of course I'm most concerned with whether it will work long term. The other things I'm willing to deal with.
I'm hoping that Hope is off on her Alaska cruise and is enjoying herself.
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Joanne,
It is good for me to hear that someone else has gone through spinal decompression. No one I know has metastatic breast cancer and no one has undergone surgery. Helps me cope hearing from you. I appreciate the comments on Ibrance. Undecided about it at this point. Good for me to hear different results from all of you. It looks like I can start at 100mgs of Ibrance instead of 125mgs? Is that correct?
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Ok well went for my infrared sauna and foot massage today. AAAAAHHHHHH!! Time for a nap, what a slug I am. Myra.
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hi lindalou,
I also had verebra collapse from mets. I did radiation, Faslodex and Xgeva - decided against surgery.
If Faslodex is still working for you, I'd stay with it for now. Those are my thoughts. You can always add something or switch it up later.
What dose you start with Ibrance seems to be you and your doc's decision. Jury is still out on effectiveness for most of us.
Myra-you deserve a nice nap! No need to apologize.
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Myra I'm so glad you loved it. How long were you able to stay in the Sauna? I only lasted 40 minutes, but hoping to improve next time. Going on Sunday evening for the sauna and foot reflexology.
I agree with Sandilee. If the Faslodex is working you should stick with it. Why use up an additional option when you don't have to.
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I was in it for 30 minutes which was enough for the first time. I also got the maitake drops. Did 6 drops, not bad. Myra.
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Reporting back from the field:
When I asked my oncologist about Ibrance, he told me some of his patients are on it. He was very positive about the drug's promise, but added "It's not a walk in the park, you know." When he said Ibrance has been approved for only first-line use, I replied that it was also being used in second-line treatment. He acknowledged this. He wants to hold off giving it to me because I'm doing well on Faslodex, adding that Faslodex and Ibrance would be my next treatment should Faslodex fail. He'd scan after three months. If that combo was not working, he would drop the Faslodex, and treat me with Ibrance and Femara.
This sounds like a good plan to me.
He's also starting me on Prolia because my spine is osteopenic; strengthening the bones may help prevent bone metastases.
I left with an Rx for a CT of my chest, abdomen and pelvis. As long as I'm asymptomatic, I'll get scans annually-- one year PET-CT, next year CT and so on.
I left feeling good about my doctor's experience and knowledge, pleased that he did not resent my research and questions, and happy that I'd done my homework.
Tina
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Sounds like a great plan Tina. You asked the correct questions and got informed answers. Myra.
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Here is an article regarding the benefits of Maitake drops.
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pearlady you are a boss! pushing through on 125mgs. yes! wishing you great great results.
myra - i'm officially on the hunt for an i-sauna/foot massage combo. you make it sound sooooooooo niiicccceeeee.
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good news ladies! I FINALLY got the approval from. My ins. Co to cover Ibrance. PHEW!
I was supposed to start the second cycle yesterday but hadn't gotten the go ahead, which I just got today. (Thank god) So tomorrow, bottle in hand, I will start cycle 2. Only this time at 100 msg instead of 125
Also, thanks to my sisters here, I have sworn off Ambien and started to take Deep Sleep at night, and B12 in the am.
Hoping things will start looking up from here, as far as sleep and energy.
Feeling positive.
Stefanie
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Tina2, that sounds like a very good plan. Faslodex alone is a lot easier than adding the Ibrance, mainly because of the blood work that needs to go alone with it in order to get the right dosage and cycle timing. But it's not that bad, really. The side effects are minimal.
I hope Falsodex continues to kick your cancer's you-know-what for a very long time!
Fantastic news, Stefani! That must be such a relief for you!
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Hip Hip Hooray Stephanie. Finally. Good luck with the drug.
Sandilee, the sauna is hot as **** but the aftermath is great. My spa has you shower off the toxins. Bring shampoo and brushes and you get a fantastic complete afterglow.
Good numbers and no pain to all....Myra.
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Whoop whoop! Great news Stefanie. I hope you get fantastic results with Ibrance.
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Great news Stefanie. So glad you got the approval. Also glad you are taking Deep Sleep instead of Ambien.
Went for acupuncture yesterday. Mentioned that I wasn't sleeping well. He put a needle in my neck (did not hurt). Had a great night's sleep. Wish I could do that every day.
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Hooray for insurance approval, Stefajoy!
Regarding trouble sleeping, I totally blame the letrozole. I had the same problems on tamoxifen, but not when I was off hormone therapy during taxol. Falling asleep is sometimes ok and sometimes difficult; melatonin or meditation/body scan helps. BUT I often wake up around 4AM and am awake for hours. It's like I just run out of sleep. I'm not sure if the hot flashes wake me or if I just notice them because I'm awake.
Regarding Ibrance dosage, I think I must have more energy on 100 mg. I have been cleaning out my closet.
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Susan, you mentioned tender gums. I've had that, too. Take care of your mouth. Having dealt with two weeks of mouth sores, I'm now being more careful. Avoiding hard foods like chips and sandwich rolls, rinsing with baking soda & salt rinse, brushing carefully, etc. It was the mouth sores that got my dose lowered.
8 oz warm water, 1/4 teaspoon baking soda, 1/8 teaspoon salt
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Yes that is normal I just barely begin to feel better in the fourth week and then it's time to start the ibrance again. Been on it do a total of four rounds. Into my fifth. I do think it builds up and up. I have to do Zumba and other aerobic hour long exercises to keep going. Fatigue is the worst along with bone and joint pain. Also taking Femara.
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I have had great scans since I've been on ibrance. I am truly grateful for this drug. Also it allows me to travel.
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wishing you the best. I have had good results with ibrance.
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I have had good results with ibrance.
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Hey! Missing you guys! Been having a rough week. Almost lost my favorite aunt to chemo side effects. It was touch and go all week, but she is finally showing improvement. She has AML (leukemia) and after about 10-12 daysinto that first round of crazy chemo, she was having a hard time breathing. They put her in ICU and by Tuesday called the family in early because they didn't expect her to make it. She's feisty and isn't going without a fight. Amazingly, she started showing improvenment Wed night and is still hanging in there. OMG, what a week!
Soooooo, I'm cramming everything I have to do into today because we leave for Alaska at 6am tomorrow (and I'm here on the boards, lol!). Anyway, intense pain has subsided. MO thinks (me too) it's the Xgeva and wants me to up my calcium intake even though my blood shows its sufficient. I think it was 9.1 this time, but the pain was off the charts! I need to investigate the calcium thing, because I am not a fan of taking it as a supplement. If anyone has any ideas about this, please share. If my blood shows fine, why would it be causing such pain? Is there another way to increase calcium levels?
Day 9 of being off Ibrance. I feel ok. Still a little fatigued, but I've had spurts of energy last couple days. I think the sauna helps my energy levels, believe it or not. Did 2 sessions this week in an attempt to detox as much as possible before my trip. Tons of water intake and a green smoothie here's and there. I'll need a mega detox when I get back! I'm feeling a little more optimistic about how I feel right now, though. The Ibrance is definitely causing me fatigue, probably through the low blood counts. However, it it works, I'm good with it!
I might try to check in before I head out. Have a great weekend everyone
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From an AP release earlier this year: "Pfizer said it would price Ibrance at $9,850 a month, or $118,200 per year. The New York-based company said in a statement that price 'is not the cost that most patients or payors pay.' "
So what are you paying out of pocket, ladies?
Tina
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Thanks for checking in, Hope. So sorry to hear about your aunt. That must have been so scary for your family. Damn cancer.
So glad your pain has subsided and you seem to be getting some of your energy back. I hope you can get the calcium thing worked out, if that's what the problem is. It's so hard to know what causes what, when we have so many thing going on.
I mostly just want to wish you a wonderful trip! I hope you feel great the whole time and come back refreshed!
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Tina,
Many of us signed up for the Pfizer Co-Pay card, which reduces the copay to $10 a month. I have no idea how long they will continue to offer this.
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Hope have a wonderful trip. Glad to hear from you. Myra.
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Tina, I am paying $25 for Ibrance and $10 for Femara.I will look into the co-pay card. Somehow they got me the first month free, getting ready to start cycle 3 on Monday
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I pay nothing. Massachusetts is a parity state so if Chemo in the hospital is covered, so are these new target therapies by mouth and chemo by mouth. I pay a lot per month for my coverage so this is the least they can do!
*susan*
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Just started second round. I haven't paid anything yet and I'm not arguing.
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Hope so glad that you checked in before your cruise. So happy that your pain is better but so sorry about your aunt. Glad that she is doing better.
Have a great time on your cruise. Also enjoy your break from Ibrance. Hope you can really get away from everything including the pain.
Love the sauna also. Going tomorrow and also having a foot massage. Last time I slept so well after the sauna. Wish I could do it twice a week also but it's difficult for me to fit in.
Enjoy your tine away and come back feeling energetic and pain free.
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Whew! Just finished packing and my back is growling at me to lay flat.....so here I am! Thanks for the well wishes! I think some of the benefits of the infared sauna are just kicking in after a month of 2x a week. I feel like my digestive track is working a little better. I'm down 5 of the 12 lbs which I think was a lot of water and bloat.
TGIF! -
What is the difference between an infrared sauna and a regular one and why is it better?
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Bon voyage, Hope! Have a wonderful trip.
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Hi Susan, I too am on day 6 of Ibrance. I had a recent bout of shingles on my scalp and thought the odd tingling was phantom pain. I appreciate your post. I have felt "off" as well. I was hoping to hold on to my newly grown hair for a while.. Celeste
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Bon voyage, Hope!
Tina
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Can't recall what the difference is between an Far Infra red sauna and a regular one, but there is a difference. I read about it a while ago and the Far Infrared definitely has healing properties. I read that the sauna should be Far InfraRed. The Biomat which is said to have healing properties also uses Far Infrared technology. I have a Biomat and used it frequently when I would feel a bit off after chemo. Lying there and sweating for an hour seemed to help my body detox and get rid of that feeling. Funny thing is that one if my cats loves the Biomat. When I use it she always lies there with me and is upset when I put it away.
Going this weekend for the sauna and a foot massage.
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Hope, Have a fantastic time in Alaska with your beautiful family! Its an amazing and scenic cruise. I wish you a pain free, stress free week.
And Bon Voyage !
Stefanie
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Hope, I may have missed your departure... but have a wonderful time on the cruise! * susan*
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Celeste, Welcome to the forum..... sounds like we will be on the same schedule for at least a while.
Stef, wonderful that you have your approval.
Yesterday was the worst day so far. My stomach was just in knots. My friend had caught a lovely striper. Made a mango salsa, avocado, grilled up the fish, and at last moment changed from sweet potato to rice since my stomach insisted on something bland. I was able to eat a bit of the fish and rice, along with the avocado, but that was it. Maybe I was able to eat 12 mouthfuls, but only because I was determined.
I really will hope for a better day today.
*susan*
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Hope, have a wonderful trip! And glad about your aunt being able to fight back and get better, she sounds like a real inspiration.
I've been taking Calcium+D pills every day since I started Xgeva about a year and a half ago. So far no problems with it. Hope the pain continues to get better, 9 out of 10 is still really high!
Tina, I'm in Massachusetts like Susan, but for the first 2 months I did have a copay of $2400 a month. It was considered an oral perscription drug and covered under my Rx plan--needless to say, I got the Pfizer card to knock it down to $10 a month, but was saving up for the end of the year when we'd maxed out on the card's $25,000 year max. But, now the insurances have decided it is on the list of items covered by my medical insurance (normally injected and infused, but also some others like Ibrance) and my copay is $0. Very happy about that! Good luck getting everything sorted!
Susan, sorry about your stomach issues, hope those get better as you go along!
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Good morning all. Had an awful night last night. Got my TMs and they went up 60 points. Didn't sleep at all, cried my eyes out. Why can't I find something that lasts longer than 4 months? Been thru 3 tx in the short yr I have been dx'd. So afraid what the next one will be. What the SEs will be. I just want to see my grand daughter born in August. I want to go there and cuddle her. I hate this damn cancer! What did I di to deserve this? What did any of us do? Myra.
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Myra, so sorry, sending hugs and prayers. What does your onc say? Does he/she consider this the end for Ibrance or is it more of a "wait for the trends" situation? There are lots of stories here of women who went through a number of treatments before finding "the one"--I know it still really stinks right now, but hopefully if it isn't Ibrance for you it will be whatever's next in line. (((hugs)))
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Oh, Susan. So sorry about your stomach issues. I hope today is much better. Do you take the pills after dinner? That seems to be the best for me- the biggest meal of the day, although I've never had the kind of pain you're describing with it.
I just finished my last pill last night of my second cycle. This cycle was much better all around- no real side effects that I noticed. The change to 100mgs made a big difference. No tingly scalp and very little fatigue. I go in on Thursday for a blood draw before I restart my meds and hope my counts continue to reflect the easier cycle.
My biggest concern at this point is..does it work? I have some sensations around my liver, so I wonder if that's my mets growing, or if it's just indigestion or imagination. I'm eager for a scan, but I don't want to have it before Ibrance has a chance to work, which probably means at least one more cycle. I really don't want to quit too early. I should get CEA results after Thursday, so that may tell me something. Remaining optimistic is my challenge at the moment.
Celebrating Father's Day today. My daughter and beau are coming over for brunch so I have cooking and garden clean-up this morning. That may sound like work to some, but it's my favorite thing. I love to have family over to eat and hang out. Those of you with kids no longer living at home will understand. Precious times.
Myra- just read your post. I'm so sorry. Is it possibly too early for the drugs to be working? Do you have a plan? I wish I could give you a big hug right now. And I'm confident you'll see your grand daughter. There are a lot of options out there, and you've just begun. Don't give up hope.
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Good Morning All,
I'm new to this discussion and having a hard time logging in. I have to reset my password every time. Ideas?
Hope, I had a Zometa treatment 2 weeks ago and am having intense bone pain. had to take OXY last night which I really really hate to do. I'll asks my onc next time....maybe he has some suggestions for dealing with the pain. My calcium levels are ok.
I'm just starting Ibrance. Do I call Pfizer to get the co-pay card?
Myra ( that was my mom's name ) Keep focusing on August and your new granddaughter. Does your onc have suggestions?
Lastly, I had a new genetic test done. PALB2 My sister and mother and grandmother all died from breast cancer, so we clearly have something genetic going on. I am BRCA1&2 negative. I should have results in about 3 weeks. I will let you all know more as I find out results etc.
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Hi Myra - I don't know as much about all of this as most of you all do, but isn't is possible that this is just a spike - I read that you have been on Ibrance/Femara since March - so maybe still early on???f and spikes possible? I read the Ibrance thread because I thought that would be the next step for me. Last scan 3 weeks ago showed major progression of liver mets and my onc feels that Navelbine is a better next step right now - she did give me a choice but I have so much faith in her I am going with Navelbine for time being. Will continue to keep up with you ladies as I see Ibrance in my future.
I hope you are feeling a bit better today - my thoughts and prayers are with you. Susie
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Thank you all for your love. I may be jumping the gun, have not spoken to onc yet. PET scan on July 2. This stress is just becoming so much to bear. I am usually so strong, this disease is knocking the wind out of me. Myra.
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Myra, many of us know exactly how you feel. You build yourself up to fight this fight, feel you really are doing everything you can, and then things like rising tumor markers land like body blows. I agree with apackoftwo that it could be a spike, seems like the numbers are up and down for a lot of us. I know your nerves will be rattled until the PET but stay determined. Focus on August. Focus on August. Focus on August and beyond.
Susan I've been having stomach issues too after Round 3. All the radioactive crap they make you drink to do the PET made things worse. Nerves don't help either. Been trying to keep it really bland as far as food goes these days. Just feeling really unsettled in general. Time to pull out the meditation files.
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Kaydeesmiles, unsettled is the perfect term. Susan, have a smaller appetite, but very little nausea. I take the meds after a full dinner, protein carbs and vegs. Myra
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Thinking of you, Myra. (((hugs)))
-Vivian
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Myra, I'm so sorry you are feeling anxious and scared. We all have to be so strong, and sometimes we just can't do it. Sometimes we have to feel the fear and sadness that goes along with our diagnosis. Try to hold on until the PET when you will get some, hopefully good, answers
The waiting is the freakin' worst.
Lindalou, go to Pfizer on line to get the co pay card.
Stefanie
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I've been on Ibrance/Femara since March. WBC count went down but not significantly. I do find that I am very fatigued. But I also commute 1 1/2 hours each way to work. I'm also getting bad cramps in my legs some nights (I take the meds in the AM after breakfast).
Just had my Pet/CT scan on Friday to see if this combo is working on reducing or stopping my recurrence. I won't get the results for a few days. I'm really going crazy waiting.
On Friday I also found out that after being told that I was on the Pfizer $10 co-pay program I just received a bill for over $3000 for co-pays.($500+ per 21 day period) from CVS Caremark specialty. Seems Pfizer reversed their original decision because I'm on Medicare D and nobody thought to notify me. All I can say is that the stress of having to deal with an unexpected bill of this kind together with my recurrence etc makes me want to scream!!! What kind of co-pays or special payment programs are others on Medicare D on? I need help find out how to reduce this co-pay so I can afford to stay on the Ibrance!
Babs
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Babs,
I had a friend who had a similar problem with Pfizer. She called them and spoke to a patient rep who ended up giving her the medication after all under compassionate care. This is the phone number she gave me. 1-866-706-2400 at Pfizer. I hope you get some good results with that.
I get leg cramps too at night and I found drinking lots of water during the day helped.
Linda
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Babs,
There is some miscommunication between Pifzer and your plan. How are you getting the drug? Is it coming from Pifzer directly or is Caremark Speciality? Call your MO office for assistance on this issue. Many have an insurance counselor who directly talks with Pifzer reps and would be able to help you to remove the $3,000.00 bill. You may need an experienced rep to handle this issue and advise you going forward to stay on the 10.00 co-pay plan.
I do occasionally get leg cramps but I start moving or doing a simple exercise and they go away rather quickly.
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Generally, patient assistance programs are not available to anyone on government health insurance. From this page: https://www.pfizercopayone.com
This statement indicates that Medicare and Medicaid patients might not be eligible.- The offer is not valid for prescriptions that are eligible to be reimbursed, in whole or in part, by Medicaid, Medicare, or other federal or state healthcare programs (including any state prescription drug assistance programs and the Government Health Insurance Plan available in Puerto Rico [formerly known as "La Reforma de Salud"]).
*susan* -
Babs,
I am on Medicare part D and receiving assistance, so again I emphasize speaking with an experienced rep who works with Pfizer to help with the co-pay. There are alternatives and hopefully the financial coordinator from the oncologist's office would be able to assist you.
The co-pay of 500.00 is the 5% on catastrophic coverage under Part D, however that is a large sum for most people in their budgets which can be consider by Pfizer.
If you need more info, look at some of my previous posts.
Kathy
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Kathy,
This is really interesting to me. I am not yet on Medicare, but I know that there will be many like me who want to understand how Ibrance [and other non-chemo treatments] is covered under this program. Is it being covered like chemo, or through one of the supplemental plans? Do you know if the rules are the same from state to state, or are they state-specific?
Did you talk with someone at your medical practice or Pfizer? Do you think it matters? Just thinking some private practices might now have an experienced rep on staff. And my last question, did you receive assistance due to low income or just because it wasn't covered under your Part D?
Thank you for tolerating my curiosity. For some reason, I am just not able to get my head around how all of these programs work.
*susan*
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Just saw this rebroadcast on 60 minutes. Nothing has changed in the law since it was first aired last year.
I am on Medicare. And beginning to despair-- for all of us.
http://www.cbsnews.com/news/cost-of-cancer-drugs-6...
Tina
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Linda, Susan, Lathy & Tina
Thanks for your input. I already put a call into my MO's office for some help and they will try from their end. I will try calling Pfizer tomorrow. I really didn't realize that when I went on Humana it was as a part d of Medicare. It's hard enough dealing with a reoccurrence of BC and waiting for the resuls of PET/CT scans. But, then to have to deal with the extra stress of being able to afford the drug that your MO says will give you the best chance of survival really seems cruel and inhumane.
I just don't understand why if we're on Medicare there is this restriction. It's crazy!!!!!
I will keep you all posted on what happens!
Babs
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Susan,
When you go on medicare there are many plans to choose from and it is wise to spend time reading the various plans so your choice is a good fit. In my particular case I have a high end medigap plan with a separate drug plan. Ibrance is a drug and therefore covered in part D. However, there are plans which include drugs as part of their plan and I am not familiar with their rules.
As far as income, I am not low income, other considerations came into play,
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So, this sounds as though the insurance companies get to decide if this is a drug or a treatment? My insurance company considers ibrance a treatment, so the RX co-pay doesn't apply. Very confusing stuff!
*susan*
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Susan, very interesting indeed.
Tina
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Here's timely news from today's New York Times:
http://www.nytimes.com/2015/06/23/business/cancer-...
Tina
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Folks, I need your help. My 81-year-old mother has estrogen-receptive breast cancer with extensive metastasis to the bones, lungs, and now liver and right shoulder lymph nodes. She was first diagnosed in Sep 2012.She has been on many estrogen inhibitors since then, and while some worked longer than others, we are now once again being advised to change medicines, this time to letrozole and Ibrance. My mother is adamant that she will not take any medicine that causes hair loss, even if it means that her cancer continues to spread. She knows about wigs, hats, scarves, etc, and insists that she worked to hard for her white hair, and intends to be buried with it. I realize some of you ladies who have been on this letrozole/Ibrance protocol for a while already had hair loss from prior chemo, but of those of you who had a full head of hair when you started these drugs, please let me know if any of you have had hair loss or hair thinning sine then. The drug is due to be shipped Thursday June 25, so if she's not going to take it, I need to cancel the shipment before it goes out. Any feedback would be appreciated.
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Fingerscrossed, I am just starting my 3rd cycle of this combo of Ibrance/Letrozloe and I have had absolutely no hair loss or thinning. I have even colored my hair on these meds with no problem. I can only speak for myself...hope this helps in some small way
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Fingerscrossed, I am just starting my 3rd cycle of these drugs and have had absolutely no hair loss or thinning whatsoever. Hope this helps in some small way
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No hair loss here, early in the game. Just half of one cycle.
*susan*
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I was worried about hair loss, too, but I have completed three cycles of Ibrance plus letrozole and my hair is thick (even though it started out having to recover from chemo).
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I am on my third cycle and haven't had any thinning or hair loss I am taking biotin which I started after radiation on my jaw it seems to have really helped with hair growth where it came out plus overall it is growing faster than normal
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You can add me to the chorus, fingerscrossed, I'm just starting my 3rd cycle tonight (my white bloodcells are finally recovered enough for that) and no hair thinning or loss here.
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Roses,
Congratulations [or whatever we say when our body does what we want] on the increased blood numbers!
*susan*
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I haven't yet heard anyone complain about hair loss (knock on wood). Tell your mom not to worry about that.
Ok, I have a question. I think this has been chatted about earlier in this thread, but hard to find so...
When do you take your Ibrance combo? I take mine with dinner because it's my most consistent meal. However, I have really bad insomnia. My hubby suggested I take it in the morning. I'm not sure of the relationship between the insomnia and the time I take the med. Does anyone have any input onthat? Thanks!
Stefanie
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Stefanie,
I am doing it with dinner. This is the only meal that feels consistent to me. I am generally at home. It is my largest meal of the day. It tends to be the meal that I have at a consistent time. So far, knocking on that same piece of wood, I have not had any insomnia on this drug. When I first started aromasin back in 2005, I spent a lot of energy figuring out what time of day to take the drug. But back then, I thought that there would be an end date at 5 years, and had plenty of time to investigate. For me, the evening was the best time to avoid the insomnia.
I am way too early in this process to be a resource I fear.
*susan*
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Stefanie I take mine with dinner also. I am far too rushed in the morning and many days don't eat a big enough breskfast. When I first started on Ibrance\Femara I had slight nausea and headaches. Taking it at night avoided all that. I have sleep issues also and have experimented with various herbals which seem to be helping. II've fround with most drugs it just works better for me to take in the evening.
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I'm on my 5 th cycle of letrozole/ibrance and no hair issues. I take my meds after breakfast each morning. Since I was getting leg cramps, I found that those were worse at night when I took the meds at night-hence the change.
I am still working on the crazy co-pay situation. I spoke with Humana and they can't help me. My MO's office is looking into help-nothing yet. CVS Caremark, who had told me I was eligible for the $10 co-pay but then I wasn't, told me about an assistance program for those in a household of 2 that make under $80,000 combined. They don't know of any other programs. I have a call into Pfizer and will advise what I find out there.
Today I got the results of my PET/CT scan from Friday. My MO is away so after 3 phone calls by me, her nurse called and said that the Dr looked at my scans and that I'm stable and should stay on my current meds. Upon questioning her further-I needed to know if stable meant my malignant lymph nodes were the same size or smaller- she advised that the malignant lymph node in my super clavicle area had grown, but not a lot. I then asked if there were any new areas of "activity" and she said there were 2 new spots on my spine. Is it me or what but does that seem stable to all of you- 2 new spots and one enlarged spot???? I am besides myself!!! I asked for my MO to call me ASAP upon her return. Just very scared at this point.
Babs
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I'm only on cycle one and no thinning yet, however my hair has thinned and I have small bald spots from being on Faslodex for 5 years now.
Question for everyone.....I had Zometa IV 2 weeks ago and am experiencing severe hip joint pain. I see my MO today. My nurse said if it isn't better this morning I will be admitted for IV morphine. Has anyone had this? Anyone taking Faslodex and Ibrance?
Babs.. I hope you get clarification and answers soon. It is so frustrating to get that kind of report from the nurse.
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Stephanie, I also take mine with dinner since it is my largest meal of the day and usually around the same time. Do you think it could be the Letrozole causing the insomnia? I have not had this issue but when I told this 7 years ago, insomnia was mentioned to me as a possible side effect.
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Stephanie, I also take my Ibrance combo after dinner since that is my largest meal and usually my most consistent times. I do not have insomnia, but I do get some killer leg cramps, especially if I don't drink enough,m(water that is).
Babs, perhaps the MO was trying to keep you calm until they returned and could go over the scan more thoroughly with you. I know how horribly frustrating all this must be for you.
My hair has not thinned, as a matter of fact, with all the supplements I am taking, both the manicurist and hair dresser commented how fast it was all growing.
I want to thank you all so much for your love and support over the last few days. I don't know you all by face, but I feel I know you by heart.
Myra.
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Lindalou I have been on Zometa for years and have never had that type of pain. I know that could be a side effect, but any discomfort that I've had has been minimal. Also any slight discomfort has been in a few days after and not so long after. I hope you get an answer to the pain and that you get some relief.
Babs I can imagine how frustrating this is to you. Hopefully you will get some answers soon from your MO. Could it be that other areas have gotten smaller, so that's why your MO is saying stable?
Regarding the insomnia which has also been an issue for me. I reviewed all of the supplements I am taking with the holistic pharmacist and have changed when I take many of them. There are several that I am now only taking with breakfast and lunch, since taking later in the day may be intensifying the sleep difficulty for me. The good news is that it's somewhat better. Taking a combination of herbal supplements and Metatonin for sleep. Also for me, having wine with dinner was not a good thing. When the wine would wear off, I would have difficulty getting to sleep. Sounds crazy, but wine can have that effect on me and apparently I've been told that it is not unusual. I was on Femara for almost five years previously and don't recall having insomnia. Perhaps it is the combined effect of the Ibrance/Femara?
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Folks, thank you for your replies about the hair loss--it is very reassuring! Will let my mom know.
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An excellent researcher and mbc friend of mine named Stephanie who sometimes reads these boards wanted to share information about IBRANCE and hair loss, as follows: In the PALOMA-1 trial that led to FDA approval of Ibrance, 22% of those taking both drugs ((IBRANCE and Femara) experienced grade 1/2 alopecia (hair loss) vs. 3% taking only Femara. From: http://www.pfizer.com/news/press-release/press-release-detail/pfizer_receives_u_s_fda_accelerated_approval_of_ibrance_palbociclib
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Spoke to my MO today. She said that the enlarged lymph node is just 1 mm larger and could just be a result of a different view or slice that was taken. The 2 more active spots on the spine are not active enough to be determined to be malignant- they're not definitive. So therefore I'm considered stable. She wants me to stay on the ibrance/letrozole combo and I'll have repeat scans to make a determination on the spine spots. We're meeting next week to discuss everything further and to decide when I'll have the repeat scans done. Waiting waiting waiting rots!!!!!
Babs
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The numbers are in. My WBC has dropped a lot. On the 10th, I was hanging at a very healthy 10, today I am at a 4.1. Even though this is just above their bottom number of a 4, it shows up on the portal in bright red with a # sign. Of course, there is no legend so I have no idea why there is a # sign. The rest of the CBC panel looks pretty good with numbers within the normal range, but in general heading in the wrong direction.
I fully expect to get a call from the doctor or her annoying PA tomorrow. At what number do they start talking about stopping the cycle? I really don't want to do that.... if at all possible.
*susan*
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Hi Susan, my lab posts normal range to be between 3.4 and 10.8 so I would think you have some room to drop. I believe people have dipped pretty low, even into 1s and 2s but bounce back in off cycle. Is this your first round and what dose are you on? Here is information on dosing protocol if it helps:http://www.drugs.com/pro/ibrance.html
Joanne
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Susan, I would be dancing in the streets at 10 OR 4. They stop me at 2.0. ANC is the more important number for my onc. Myra
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Myra,
I don't see anything called an ANC on my panel. Any ideas on other names for this? [I am not much of a dancer, but I could start in the morning.]
*susan*
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Susan, ANC is absolute neutrophils count. It should say neutrophils (absolute) on your results.
Joanne
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Okay.. that is AbsNeu on my report .... and I am at 2.28.... and the normal range is 1.6-6.1. So low, but not red on the screen.
*susan*
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Here is a link to go with jjski62's link for the Ibrance protocol. It shows the number range for each grade (1-4) of out-of-range lab results. So you can see how severe or not your numbers like WBC or ANC are, and guess whether your onc is likely to say your dose should be lowered or your cycle delayed. It's probably TMI for some, but I feel more secure when I can understand more about what my lab results mean. (Disclaimer: I have no training in this, but it looks like the right chart to me.)
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Thanks Shetland! I bookmarked the link. Very helpful.
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They stopped me when the WBC were 2.1. They let me continue when they were 2.5 so the cut off must be in there somewhere. On my week off, they went up to 4.8.
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Hi everyone, Can hardly keep up with all these posts,
Thanks for the info on blood counts, Shetland pony. My neutrophils were only 1.23 at the last visit to Dana Farber, and my onc kept me on the 125 dose of Ibrance with letrozole. I am on my 4th cycle (will have scans 7-1 to see how it is working). Very nervous to have the scans, good thing I am so busy I don't have much time to think about it.
Good Luck Myra with your scans, I think you have them around the same time as mine. Praying for good results for you and everyone. Try not to worry and just take things one day at a time, otherwise it can be overwhelming.
Romansma, hope your aunt is doing better. My friend (was my babysitter and next door neighbor as a kid) almost died from chemo (was done to about 80 pounds) about 9 years ago, but she made a miraculous recovery and looks great now and is doing amazing (in fact, she is the same friend who found out about Ibrance getting FDA approval just as I was needing a new drug).
I have not had bad leg cramps in a long time, but they were very bad last night - had a glass of wine last night for the first time on this drug, and it must have dehydrated me. So everyone keep hydrating!
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PA just called and stated that my blood work is perfect. So, onward!
*susan*
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Yeah Susan!!!!!
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Woot! Woot! Great news Susan!
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Susan,
"Perfect!" Take it to the bank!
Tina
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Go dance in the streets!! Myra.
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The balls of my feet are too sore for dancing, but, my daughter made me some lemon sorbet from scratch. I think I will enjoy a small bowl this evening. Evidently, I should anticipate finishing this cycle, and starting the second cycle on time at 125mg.
*susan*
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I will chime in... I have had three cycles of Ibrance with NO change in hair. I have also had significant neutropenia and am hold til next week on restarting Ibrance. I take my Ibrance and femara at lunch. I attempt to swallow them in the middle of my lunch. But if I do not take them til evening my insomnia is increased. My tumor markers are at 7- hurray.. hope this helps. Carolyn from Music City
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Enjoy your sorbet Susan. Love lemon sorbet and homemade sounds wonderful! Great news on your bloodwork.
I am ready to leave the office for a much needed and much anticipated vacation. So I will be celebrating tonight with a bottle of beer. Do love it but try not to have too often.
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I applaud all of you who have been taking Ibrance before me. I am truly awed by your strength and your bravery to begin this new drug. My WBC is 3.2 today so my MO doesn't want to start me on it yet. I will remain hopeful and continue to be guided by all of you. On a side note, Northern Lights are supposed to be seen in my area this weekend. Certainly worth a 3:00 am outing don't you think? Linda
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Go outside Lindalou! Enjoy your sorbet Susan and ur beer Dorothy. I imbibe in a glass of wine every night. My one vice.
Went to the Intervention MD today. He thought I was crazy spending money on Infrared Saunas. He told me I had to do cardio to raise the heat of my blood naturally with exercise. 5days/30 minutes per day. He put it this way, Ibrance and Letrazole were the nails and exercise was the hammer. Made tons of sense, perhaps that was why my aggressive BC stayed away for 16 years. Was a total gym rat then, slug now. Anyone want to guess where I will be tomorrow morning?
Hugs to all! Myra.
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I have been on Ibrance for 9 days now and AI for 3 weeks. No side effects yet. I have trouble swallowing pills but have been able to get the pills down until tonight. The pill broke so I spit it out because the nurse from Express Care drug said not to swallow the powder. Very disappointed in myself. I have a tumor sitting on the lining of my ovary and it is pumping fluid into the belly. I have to get a paracentsis tomorrow. This is will be the 5th one in 7 weeks. Anyone else have to get fluid drained?
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Yes! I lived in Alaska for 6 years and watching the Aurora is something that I really miss.
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Oops--that message was for Lindalou. Newbie here.
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I, too am in my fifth round of ibrance. My side effects are not too bad. Except for the pain in my back. Went for a massage today and came home with extreme pain in my back. I am interested in the sauna treatments or some other alternative help. I am using all the pain medication I can take and still in pain. Any ideas? Wishing you all well.
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Hi everybody,
I got some mixed news today. My PET results came back and the mets that were on my liver and spine did not light up this time so that was great to hear. However my tumor marker is on the rise again. It's a pretty good indicator for me so it's something I'll definitely have to watch. But for the time being I think I"ll just allow myself to join Susan in that happy dance.
I'm currently on a break from the 125mgs and hoping my counts bounce back enough to restart at 100mgs soon.
To the folks that were talking about Medicare and Ibrance... I don't currently have medicare but I'm wondering about the future. Babs, were you able to get it sorted? Does anyone know definitively if Ibrance is considered a drug or a treatment? Max-otto did I read correctly that you have Medicare, Medi-gap, and a separate drug insurance plan that covers the Ibrance?
Deb, I have a similar problem. Back hurting like all get out lately. The stabbing pains have calmed a lot on Ibrance, but that nagging, dull ache just never goes away. Have you heard about the BioMat? They sell them on Amazon. I'm looking into that to go along with my accupuncture as I don't do too well with pain meds. They can be a little pricey but there's a smaller one now that is like half the cost of the original BioMat I believe. Some of the people here also do the Infrared Sauna. I haven't tried that yet but it's high on my list.
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Kaydeesmiles I have a Biomat and love using it. It is great for pain relief but also the FarInfraRed technology is said to help fight the cancer. My onc actually has them in his treatment room also. The best manufacturer is Richway. They don't sell direct, only through distributors. Of course I realuze that in itself is not going to cure the cancer. When I was on Halevan and would have that feverish slightly off feeling, an hour on the Biomat would help tremendously. It is said to be great for detox and inflammation. I have the half body mat but at some point I am going to purchase the full body mat. Ma4ny alternative Drs. here n NY offer treatment wisth the biomat. I have gone for the FarInfraRed sauna also. My onc thinks it works similar to the Biomat. In Japan they claim to have successfully treated cancer with the biomat. But of course it must be very intense treatment. Supposedly using the full Biomat to lie on and the half on top.
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Kaydee, glad to hear about your scans - those may tell more than the tumor markers, hopefully.
Deb20 and others, very sorry to hear about your pain - the biomat does sound good to me, as I am staying away from pain killers as long as possible since I'm driving kids all the time to faraway games. Thank you, Pearlady, for that interesting info - Are these mats very expensive?
Praying for everyone to have their insurance issues settled. No one needs this extra stress, cancer treatments and scans give us enough stress!
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So my third round of Ibrance cost me $250 copay. First two rounds cost nothing out of pocket because of waiver and coupon.
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Hi ladies,
I am newly (June 8, 2015) diagnosed with Stage 4 breast cancer and this is my first diagnosis. I have two very small lesions in my liver. I am 36, no kids, never married and have not going through menopause yet. I was given a Zoladex shot two days ago to shut down ovaries and I started on Ibrance and Letrozole yesterday for the first time. Your posts are giving me a positive out look on all of this. In two weeks I will go for my first blood test. Hoping all goes well with that. Praying for you all!!
Monika
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Praying for you Monika. Sorry to have you join us here but know we're all here to help and support each other so rant rage or ask questions at any time!
I applied for pfizers need based help and was approved. A family of 2 must make under $79,000 and change. They do NOT ask for documentation. And if one is on a Medicare part d drug plan then theyre not eligible for Pfizers $10 co pay plan. My Medicare part D Humana pays for Ibrance but the copayment is $2400 until you meet catastrophic level and then the co pay goes down to $504 plus change. It is Medicare that won't let Pfizer offer the help. Crazy!!!!!
All I know is that no drug company should be allowed to charge people in dire need of a drug so much $ for that drug!!!
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Welcome Monika. Hoping ibrance kicks the butt out of ur liver lesions. Good luck! Myra
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Welcome Monika! I am new here myself and have learned a lot of valuable information in the short time I have been here.
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Monika, sorry about your new diagnosis. Please give us some more information about your diagnosis.
I'm not sure if you had BC before or if you had breast surgery? Can you tell us more about the type? I would love to give you some great seasoned advice, but I'm not sure where you stand.
With regards to the Ibrance and letrozole, there is a very good possibility it will do great things for you (and me, I hope). Fingers crossed.
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Finished my second cycle last week and saw my doctor yesterday for blood work. I got the go-ahead to start my third cycle on time. Yay! The 100mgs seems to be very tolerable for me; no side effects at all, and decent blood counts. I start again on Saturday.
He also scheduled me for a scan in three weeks.
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sandilee, that all sounds great.
Has anyone heard from Hope? I know she was on an Alaskan Cruise, and I think she left around the 20th, so I'm worried she is on the cruise ship that had the plane crash (although I'm sure she is fine)
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Dorothy and I were worried about the same thing. We do not know what line they were cruising. Hopefully all is well.
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Sandilee..glad you are doing well at 100mg. Since my WBC is so low to start with, I wonder if I could start at 100mg, instead of 125mg. Thoughts anyone? I'll ask my MO in 2 weeks when I see him. I'd like to get started.......Linda
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My Ibrance came in the mail today 6/26. I started letrozole on Tuesday. Tomorrow, I'll take the Ibrance and letrozole together. I've been told low white cell counts is a common side effect. I've also been told to watch for pulmonary embolisms (blood clot in the lungs). I'll follow to see how everyone is doing and what the main side effects seem to be. Good luck to all of you! Hugs, SharonA -
Sharon and Monika - welcome to the thread. The folks here are so knowledgeable. I know they'll be as big a help for you as they have been for me.
Monika, a scan at the beginning of the year showed some small lesions on my liver as well. Since then I've had four months of faslodex + an AI, then 3 rounds of Ibrance + AI - and the latest PET showed no liver mets. I've also done quite a bit diet and exercise-wise to try to make my body as inhospitable as possible to the cancer. A new diagnosis is beast to deal with and process. Hang in there.
pearlady, thanks so much for the BioMat info. I'm researching now.
Babs, so glad about your progress with Pfizer. Fighting the drug companies and insurance companies is definitely stressful and none of us need that. So it's the part D that's the problem? It appears that Max_otto has medicare but also has some other kind of insurance for drugs that covers the Ibrance. Will it be possible for you to switch to something like that when open enrollment rolls around?
Sandilee great to hear you can move forward! Hoping good scans are ahead.
Holly, yah - I'm going to take these little celebrations where I can. I'm wishing us all much luck on this drug.
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Not that I think nine adults dying in a plane crash is a good thing. Truly its horrific. That being said, I found myself relieved it wasn't two families with young kids.
Maybe because Ive been on that tour with my own family and I can relate to that, or maybe because I can now be sure our Hope wasn't on that plane (a little paranoid I know).
I hope everyone is feeling god today. Have a wonderful Saturday. I'm off to San Francisco for a 50th birthday party/surprise wedding. Fun!
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Good morning friends! Relaxing at a coffee house in Pike Place Market in Seattle. Found some organic cherries and feeling good to be off the boat. I found that I'm not a happy cruiser beyond about 4 days. We had fun and saw some amazing sights. However, the cramped balcony suite and non stop food was a bit much! I had some crazy pain days that may have swayed my enjoyment. Really need to figure out why some days are ok and others are off the charts! If it was progression, it seems that it would be constant, but what do I know! I will start round 5 of Ibrance tomorrow and probably talk to my MO this week about the pain spikes. Here's a pic of Seattle, really love it here in summer! Enjoy your weekend!
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Hope, so glad to hear you and your family are fine! My thoughts immediately went to your cruise when we heard of the plane crash. I am getting those damn spikes also. Somedays I feel like I can run a marathon, and some days my side hurts. PET this week. Hopefully, it is just my paranoia.
Sandilee, congrats on the blood work numbers. So glad you are able to maintain on 100 mgs.
Have fun this weekend all. We have not had rain in weeks, got free tx to an outdoor concert for volunteering, and guess what, it's raining.....UGH
Myra
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Hope,
How lucky you are! I have been to Seattle five times and have never seen it in the sunshine. I have experienced snow, sleet, rain, mist, and just general and miserable grey.
Welcome back! [though really sorry to hear about pain spikes.]
*susan*
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hope so glad you are back and safe. Of course we wondered if it was your family even though we knew it probably wasnt. Love Pike Place Market. Remember having some great breakfasts there. Beautiful picture of Seattle.
I hope you can get some answers on your pain. Back to the sauna? I spent hours yesterday on my biomat.
Arrived in St. Maarten today for 7 days on the beach. Just booked a foot reflexology. 86 and sunny. Love it.
Have a good weekend everyone.
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Awe, yes, I booked a foot massage on the cruise. Very relaxing. Myra...any ideas on what the heck is going on with pain spikes? I feel good today. Yesterday, I was miserable, in tears at times. Last night felt like the flu. So strange
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Back to the Ibrance cost question re Medicare: I just found an updated formulary online from the insurance company that provides my Medicare Part D (Rx) coverage. It indicates that Ibrance began to be covered May 1 as a Tier 5 drug. From what I can gather from my plan description, I would fall into the "catastrophic coverage" stage of the plan, which would pay "most of the cost for covered drugs" once I exceed $4,700 in out-of-pocket costs annually. Considering the supposed cost of the drug, this would happen very quickly.
Tina
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Tina,
That is the charge for just looking at a bottle of that drug.
*susan*
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Ha! Susan you are so right. The cost is ridiculous.
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Susan we are similar. Mets in 2011 for me. NED for 3 1/2 years on Faslodex, progression to bone in April, started in Ibrance end of May.
Loved your joke about the cost of the Ibrance. Good one.
Stefanie
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Kaydee
The Ibrance is covered under my plan (Part D Medicare through Humana) The co-pay is very high though. Until I reached the catastrophic level it was about $2400 per 21 days and now it's $504 per 21 day. It's because I'm on a medicare part D program, that I am NOT eligible for Pfizers $10 copay program-that's the issue.
Here's what's on Pfizer's web site about the $10 copay program
- The offer is not valid for prescriptions that are eligible to be reimbursed, in whole or in part, by Medicaid, Medicare, or other federal or state healthcare programs (including any state prescription drug assistance programs
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I was able to log into my doctor's portal this morning and see my latest tumor marker results. My CEA went down one point!
While it's not a lot, this is the first time since January that they haven't been rocketing upwards. I've only completed two cycles, so I'll take that directional shift and hope it portends a downward trend. CEA is the only one that seems to be accurate as far as progression for me. The others don't seem to change much one way or the other.
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Sandilee, that is great about your CEA. It is now moving in the right direction. Yay !
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Just read about the plane crash and caught up here. We were oblivious to the happenings outside our ship! Tragic accident. Very sad.
We made it back to Ventura late last night. I slept till 10! I never do that! Pain seems to be controlled with pain mess, so should be a good day. Wish I knew what was causing the random spikes in pain.
The talk about Medicare/Ibrance copy's is frightening. I may be faced with that at the end of the year. Scary!
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This Ibrance is so hard on me! I sure hope it works! I have been on hold due to low platelets mostly (54 last week). My MO said that they need to prescribe the 125mg twice before lowering the dose to 100 per "protocol' . What? It's no longer on study shouldn't she have more flexibility? My WBCs and ANC were marginally low, but I also had a raging UTI which would bring the count up. It would seem to me that I would do better on 100mg. Why make me go through another month like this?? I feel lousy. She said that it's the phamecuetical companies and the insurance industry stopping her and "it's not like it used to be". (My 125mg bottle was already sent) Wouldn't give me Metformin either. Said I needed to go to my Primary for that even though she admitted it would probably be helpful. Really? This s**cks!
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Great news Sandilee!
Hope you get some relief soon Vivian!
Babs
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I only did one round at 125 mg which was stopped after 2 weeks do to low white count. When I re-started it was at 100 mg so all doctors must not follow that protocol. There seems to be so much variation on Ibrance some have posted staying on 125 mg with lower counts then mine were I guess we just have to triust our doctors
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Vivian, I was switched after one round. I don't know where your MO is getting this info. Myra.
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Sandilee, wonderful news re: tumor markers
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I was also switched to 100mg after one round. Strange they would make you stay on the 125 for another month, but every doctor is different. I guess because this drug is still so new, the doctors are still figuring it out.
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I'm so sorry you feel bad, Viv, My doc switched me to 100s after the first round. It does sound like she is following the original study protocol, but I don't think that's required at this point. Maybe she doesn't trust that the drug will work as well if the dose is reduced too early.
This will be my last cycle before a liver scan. I'm actually really looking forward to knowing if it's doing the job.
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As usual, I'm so behind on this thread! Congratulations for all the wonderful reports so many of you have had! It's wonderful and also very encouraging--long may this last!
Hope, welcome home!
Newbies, welcome!
And Vivian, feel better soon! I, too, went directly to the 100mg after my WBCs tanked on 125mg, but I wonder if the difference is that yours is platelets not WBC? Maybe the protocol is different in that case (just a guess)? My onc showed me the Ibrance info for doctors when we were talking about the protocol for WBC, there's a booklet that spells out all the if>then things. Maybe you could ask your onc to show you the protocol so you're not left guessing about what happens next?
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Thanks you guys for giving your input. i really do appreciate it! I think you may be right, Roses, about the reason being my problem is platelets, not WBCs. I am going to ask to see the protocol next time I see the doctor. That is an excellent idea! I have also made an appt with a holistic doctor to balance out my medical needs. I was using a very open minded GP, but I have moved and his office is no longer convenient for me to go to (2.5 hr drive).
Sandile, good luck with your liver scan. Happy to hear about your tumor markers!
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Vivian, breaks my heart to read how difficult this protocol is on your body. Is your week "off" coming up soon? Maybe those 7 days will help your body refund its balance.
I am still on cycle 1 but the specialty pharmacy called tonight to schedule my next delivery. Evidently, UPS won't be delivering over the long weekend, and of course their office will close as well, so they are making this month's calls early. One less thing to worry about.
Not doing too badly overall. The most annoying side effect, the sore/burnt soles of my feet, seems to have taken care of itself and I am being careful to always wear the Teva style sandals I own since they have some bouncy padding.
*susan*
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Romansma - I saw my oncologist today and asked her the medicare question re: Ibrance - I have just started Naelbine (Xeloda failed) but Ibrance will be the next step for me so I watch this thread - she said she has patients who are on medicare with supplemental part D that are getting it covered - she said she would look into which insurers they used and which part D plan they had - I am learning there is a huge difference between plans and companies - I will let you all know what I learn. So glad you are safely home and had a good holiday. Susie
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Susan, Thanks for the concern. I think part of the reason I've been feeling lousy is from the- indirect effects of Ibrance. For example. My suppressed immune system laid way for a urinary tract infection complete with the symptoms and an antibiotic that made me very nauseous. My hemoglobin is 9.0. Although this is "acceptable" for us, it is too low for normal ppl and its making me still feel SO tired!. The general stress on my body has caused an outbreak of generalized ecxema (itchy!) and cold sores on my face - never mind the major bruising! To top it off! I am having awful pain in my lower back and hips. Can't tell if it is from the Ibrance or my mets in that area.
Hope this did not come out like a rant! I think these side problems are the nature of the beast. Can I deal with them? Sure! But as we all know that does not always prevent that lousy feeling. I get my labs tomorrow and.am hoping for an improvement.
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Hi Susan,
I'm struggling with sore burning soles as well. Tonight my feet seem a bit swollen too. I've also been getting an odd prickly/tingly sensation in my arms that comes and goes. The weather has been very warm here so maybe that's playing a part. I have felt lousy the last couple of days, tired and achy and not able to sleep well. I'm looking forward to my first "off" week.
Celeste
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Good Morning All,
I am unable to start Ibrance yet because my WBC is too low to begin with. I've had 4 separate rounds of high dose radiation to my spine (twice) and ribs (twice) so low WBC will always be an issue for me. DId most of you start out with WBC closer to 9 or 10?
And one more question....are most of you on Letrozole in addition to Ibrance? Anybody on Faslodex and Ibrance?
Addressing the bone pain spikes.....I get those a lot and my MO said they can be due to flare ups from the Faslodex or AI's. But I have a lot of bone mets which are now in my hip as well so hard to tell sometimes. I couldn't walk very well for the past 3 weeks but that was a direct side effect of Zometa.
Viv, Celeste, sorry about the side effects. It's good that we can share what we are going through. I know it helps me. Linda
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cenglish,
Not to be alarmist, but swelling in my feet was one of the things that my oncologist insisted that I call her about. Have no idea why, but thought that I should pass that along.
*susan*
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Vivian, I am so sorry to hear about the problems you are having. I know that stress can be a real horror. DH and I were just discussing that last nite. Do you have someone to talk to? A therapist? I am so grateful for mine. I decided the stress of the constant blood work and numbers games is making my stress explode. Having my scan Thursday, so I will know if pain spikes are from the femara or not. Can't see MO til Monday because of the holiday. More stress, but I decided I was not going for bloodwork but once per month. I can't handle this anymore.
I never started with WBC at 10. That's why I told Susan I would be dancing in the streets. I think I started at 5. There you go, more numbers.
Cenglish, I agree with Susan about feet swelling. It has to do with blood clots. Please call today.
To the rest of you, hugs and good wishes for a great day. Myra.
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Feeling better this morning. Amazing what sleep can do for your mind and body. No swelling in my feet this AM so I'm sure it was the heat, but I see my Dr tomorrow and will definitely bring it up first thing. I'm so grateful for this thread. Having MBC can be very lonely. I stopped going to my young survivors group several months ago, I know I was their worst nightmares come true. It's great to be able to share with others who are on this @$#! journey with me.
Celeste
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Celeste, I get the arm tingling/prickly feeling too. My doc wants me to try gabapenti
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Susie, thanks for checking on the Medicare question. I'm not on Medicare yet, but will probably sign up towards the end of the year. I think it would be good to have info here about the differences in the plans for those on Medicare and those about to begin their coverage.
lindalou, if you are at 9 or 10 for WBC now, you should do well. I've had a lot of radiation too, but I started around 2.8. I hang around 1.1-1.8 now depending on where I am in the cycle.
Vivian, sorry you are having a hard time. Maybe it's just a rough start and things will even out. I, too, am very fatigued much of the time. Hemoglobin isn't in need of a transfusion, but it's on the low end and probably the cause of my sluggishness. I had a copy of the protocol at one point. I will look to see if I still have it.
Myra, hang in there. I am sooooo with you. The pain spikes are very confusing and worrisome. I think I am starting to cave on holding out without a scan. I had 3 intense days on vacation that really had me wondering what could be wrong. They were not consecutive days which is even more bewildering. It seems others are having increased back and hip pain too. Maybe there is something more to the side effects, or even a drug combination. Who else is having increased pain? What other drugs are you taking, ie. Xgeva? Also, the pain is concentrated in my back and hips, but by the end of a spike day I ache all over and feel almost feverish. Anyone else feel that at times?
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Yes Hope sometimes I feel feverish around 4 or 5, take temp and it is normal. My pain also is limited to hip and side. Sleep well though and sometimes get numbness in leg. Xgeva is my only other med. just got the call from tech reminding me about PET scan (like I could forget). Thank you for all the love and support. Myra.
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Romansma and Myra, i hope you find relief soon. I have a lot of pain in my hips and spine and ribs but mine are due to mets and Zometa. I know what you mean when the pain is intense. It's hard to breathe. I try very hard not to take Vicodin but when I do, it helps a little. Xgeva gave me intense bone pain too, so I tried Zometa. Actually worse on Zometa. I get aches and moderate pain on Faslodex, which I've been on 4 years now. I finally caved in and took a Vicodin yesterday which did little. Tried an OXY which helped quite a bit, but I hate taking those opiates, so I only take them when I truly can't stand it. I also have fractures in my ribs and vertebrae so a lot of my pain stems from that.
My WBC is 3.8 right now and that is without starting Ibrance so I'm a bit worried about that. I will get new counts next week.
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Interesting to know you get that achey, feverish feeling late in the day too, Myra. It isn't every day, but usually after a long day of intense pain.
I am on Oxy around the clock and on the high pain days I am taking it every 4-5 hours to little effect. I use dilaudid, but rarely because it knocks me out.
Just called my MO office to talk about all this. Will see if she has any ideas
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I am at 3.4 on day 9 of my 3rd cycle. My onc is happy with that. I started with blood work every week for the first cycle, then every 10 days for the second cycle. Onc told me today that I "graduated" now to blood work every 2 weeks and will probably stay on that. She just raves about how excited she is about this drug, I will have a scan in July and we will see if it's done its job. Had tumor markers drawn today, last month they dropped 50 points, hoping for another drop. This stage 4 is still so new and scary to me but I have learned so much from reading all of your posts here and also in the bone mets thread.
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Great news Lynwood! Hope this works for you for a very long time!
My MO had a nurse call me today and scheduled 3 MRIs. I already had one tonight. Two more tomorrow. I guess she thought it was time to figure this out too! I already feel that familiar uneasiness about scans and their potential to send me on a roller coaster of emotion.
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Sandilee and Lynnwood - great news about your counts!
Celeste - I'm another one who gets that prickly tingly feeling. It just seems to come out of nowhere sometimes.
Romansma and Myra - wishing you very best and hope everything goes well with the scans.
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Saw my MO yesterday to discuss my PEt scan results. She says the uptick in activity in the 2 areas on my spine are not definitively BC. She wants me to stay on the Ibrance/ letrozole for 3 more months in the hope that it will be effective for me. Feels 3 mos on it isn't enough time. But my bc blood markers have increased every month!!!! Doesn't make me feel very confident. I'm trying to stay strong and positive but!!!!! This bc is a major roller coaster ride!!!!!
Re Medicare part d and ibrance. Yes they do recognize and cover the ibrance. It's just that the copayment can be ridiculously high. And if you're on part d then you are NOT eligible for the Pfizer $10 co pay program. You can be eligible for pfizers need based program where they pay the entire copayment if your gross pay for a family of 2 is under 79000.
Romania and Myra good luck with your scans!
Babs
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Hope, I hope all goes well for you. A lot of things happening around here lately. Hello and welcome to all the new women on this thread.
Scanxiety is kicking in quickly. Yes this Ibranceland is a roller coaster of immense proportions. This dx is also a major roller coaster of numbers, markers and scans.
Good luck to all having scans and bloodwork. I am so grateful to have you all. Myra.
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Hello all....my sentiments exactly Myra.....Best wishes to all who are going through scans. I had an MRI yesterday and now I'm allergic to the gandolinium contrast dye. Isn't this fun? So glad to be able to touch base with all of you. Thank you for your help and guidance.
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I finally started IBRANCE yesterday. I am hopeful. I have been following here and hopefully know what to expect. Thank you to all of you for being willing to share your goods and bads. It makes it a little less scary.
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Just got a call from my onc. CA 27/29 was 203.5 at time of discovery of bone mets. Went down to 156.4 after first cycle of Ibrance and yesterday was 106 after second cycle. She was very excited and feels that I will really benefit from this treatment. Nice to get good news for a change
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That is so exciting! I am happy for you and your family!
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Lynwood, awesome news! So happy for you!Babs, my MO has been on the same train as yours. My tumor markers have been steadily increasing, but she thinks that since this is a hormonal treatment, it takes time to work in some cases. I've been trying to hang in there for the last couple of months, but I hit a wall this past week. I'm in cycle 5 and have had increasing pain. Coupled with the increasing tumor markers, I just can't process it mentally anymore. My MO agreed and ordered scans. I'm having 3 MRIs because Pet scans don't seem to work for me. Had my first last night and 2 more this afternoon. Then, the fun part. Wait for results!
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Lynnwood, so happy for you!! Hope praying for you.....OY! Myra
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Lynnwood, that is really great news! Are you taking Letrozole or Faslodex with the Ibrance?
Hope- I'm so glad you are going to get some answers. As hard as waiting for the results can be, I think it's harder to float along not knowing anything. And you need to get some relief from your pain, whatever the cause. Maybe she'll prescribe something else when she figures out why it's happening. Good luck this afternoon.
And good luck to you, too, Raine-Wells. I hope your side effects are minimal.
Lindalou- What will they give you now that you have that allergy? What a bummer! Good luck with your results and please let us know asap!
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Sandilee, I am taking Letrozole with the Ibrance. Currently on day 10 of 3rd cycle
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So glad it seems to be working so well for you, Lynnwood. Your tumor marker reduction was really fast. That can only be a good thing!
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Sandilee, since I am new to all this, I was wondering if that reduction was fast. I know my onc was very excited when she called me this morning. I will be having a scan at the end of this month and we will see
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thanks for the good wishes Raine-Wells, Myra, and Romansma!!
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my Onc says there is this doctor at UCLA named Finn who is the expert on this drug. Finn says keep the dose as high as possible. My aNC is .9 and my wbc is 2.0. I'm on 100 mgs. He won't lower me unless my anc goes to .5. That's ok with me.
Also, for those of you with really bad pain flares, my Onc says it means the drug is working. Almost makes me wish for pain.... Almost.
Good luck on your scans !!!!
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Sandilee, I now have to take 100mgs of Benedryl two hours before the MRI and then they will also give me a IV Benadryl. I mostly broke out in a rash on my arms and chest and neck. ITCH.....
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Another Ibrance surprise. I called CVS specialty pharmacy to order my Ibrance 100 after being off for a month to let neutropenia diminish...They said "whoops" you needed a prior authorization. Hope to get it soon.cds
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Lindalou,
Sorry to hear about your allergy to the dye, I hope they can figure out what works for you. I had my bone and CT scans today and had a massive headache afterwards and was wiped out for the entire day. Also, they did the wrong CT scan - things didn't seem right since they sent me to a different place and didn't make me drink like they usually do - so I asked them why, and they said it was because they were only scanning the chest, but when I asked them if they were sure I was only supposed to have the chest scan (given that I had more scanned in the past), they found that they had done the wrong scan and that I now need to have it again soon (I had already had the IV taken out, and I don't think they could put in more dye anyway in same day, not anxious to have the dye again).
Morale of the story is "Make sure you question everything - don't be afraid to ask questions!"
Lynnwood, great news, congratulations! Was this your first time treated with letrozole, or had you failed letrozole alone?
Romansma, hope you get some answers from the scans, and especially some answers to pain relief. Praying everyone gets good news on their scans. My doc appointment is not for a week (and now I need another scan), so I doubt I'll get results till then, but the guy who did the scanning said the nurse told him to tell me my blood looked good - though I'm not sure of the details, it is nice to hear something positive (I am still on the 125 dose, just finished 4th round of IBrance/letrozole).
Car2tenn, sorry you have more stress with getting the drug, good luck with the authorization.
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3Holly, I was initially treated with Letrazole 7 years ago when my Cancer was stage 2. Diagnosed with widespread bone mets in April of this year and immediately placed on Letrazole and Ibrance by my onc
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Lynnwood, then it is even more encouraging to know that you are having success on the 2nd try (with the help of Ibrance). Great news! My cancer also started 7 years ago, in 2008, but I was stage 3A (spread to bones/lung and Stage 4 a year ago) I hope you have continued success on the Ibrance.
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Stefajoy, I hope your Onc is right about the pain. He didn't happen to elaborate on why pain would flare on this combo, did he?
I spent almost the entire afternoon in a tube of joy! My one good vein rejected the IV for the second day on a row, so they had to put it in my hand. I have to go get labs tomorrow, so hop they can find a good vein!
Myra, when is your scan? I need to hear some more good news!
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Thanks once again, you guys, for the support. It really does help to know there are others to "talk" to that really understand. I am feeling better now- rebounded well from Round 1. Babs, I totally understand your concerns. I would be thinking the same as you. 3 mos to us is on a different time line than your onc's. When I was on Afinitor for 3 mos while my tumors grew larger, I felt like I had wasted precious time when I could have moved on to something that would work. But, hang in there, the scan was not bad- no new growth is a welcome sign!
Lindalou- sorry about the dye allergy. Do you have an allergy to seafood and shrimp? I have heard that sometimes they go together. I am thinking that the MRIs are bad enough without an allergy! And Holly, it angers me that they did the wrong scan! When I was on Veliparib I had an MRI of my pelvis every 9 weeks to measure a targeted tumor. On one of my scans it was coded wrong and they did my spine and stopped short of my pelvis. I realized they were screwing up and insisted on a pelvic MRI. I made a big stink, but they said it was "too late" and made me go back the next week. From then on, I asked to see the order sheet before getting on the table. You are so right - be careful! No one understands you and your treatment better than yourself.
Lynwood thanks for sharing the good news! It is so encouraging!
Myra, I actually do see a therapist (psychologist) right now together with my DH and it has helped us a lot. I also take an antidepressant and do well with it. I am not falling apart mentally but sh*t, my body is having a melt down! And dealing with pain, as you well know, is a real pain! lol - could not resist that play on words! I do like the idea that it means the Ibrance is doing its job!
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Vivian, so glad you are feeling better. Good idea, thanks, I will ask for the order sheet before any more scans to prevent the redo (especially given that I feel like crap after the dye injection). I haven't heard back from the nurse yet so don't know what caused the error - There is a new computer system now at Dana Farber which has caused some problems and long lines just to check in for bloodwork at 7:30 in the morning. I know they had a big effort to recruit more patients, maybe they can't handle the increase, or it could be they are having difficulty with the new computer system.
Good luck with your labs tomorrow, Romansma.
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Good morning all. I think I slept 10 minutes last night. Scanxiety is in full bloom. Appt 10:15. I don't know why I always have PET scans instead of CTs, but I do. No results until Monday because of holiday, so invited some friends over for the fourth to keep my mind busy. Scared. Myra.
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Ah, Myra, yes, scanxiety. Mine kicked into to turbo gear yesterday. May be tmi, but haven't needed my Lynzess the last couple days! All the what ifs. No one can say we have over active imaginations, though. We've been here before and gotten the worst possible news so it's probably more of a PTSD when it comes to scans. My appointment is not till Tuesday, so unless I figure a way to get my hands on those scans, I have quite a wait in front of me! Some friends invited us up to their lake cabin, so we are going with a group of friends and hopefully a huge dose of distraction.
Hope everyone has fun plans this weekend! I'll be looking forward to seeing the fireworks over the lake while I try to keep my anxiety in check!
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Holly, the wrong scan? At Dana Farber???? Totally unacceptable. Bad enough to do this once, but twice is just plain cruel.
Romans, good luck with firework distractions. The waiting is not an easy thing at all.
and Myra, same to you. Hope you find a way to make the waiting tolerable.
The last few days have been full of fatigue. I am also having some difficulties concentrating and remembering stuff [see how many people I didn't respond to above.] But, I am done with cycle 1!!!!! I am still standing, though on very tender feet. For some reason, this feels like a bigger accomplishment than the last five years of getting Faslodex once a month. I suspect that this is mostly a mental thing.... once a month vs taking every single day. The every single day is a reminder, regardless of how I feel, that I am a "sick" person while a monthly hospital visit meant that I could "pretend" every other day of the month.
Now a 7-day reprieve.
*susan*
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Myra, the anxiety is the WORST!! I am already feeling anxious about the scan that my onc said she will order at the end of the month. My heart pounds and I can't concentrate on anything until I know the results. Romansma, good luck with your appointment on Tuesday! Vivian, you are 100% right that it really helps to be able to talk to people that totally get it. Until it happens to you, you have NO idea of the shock, stress and uncertainty.
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Wishing everyone waiting for scan results a pleasurable, distracting weekend. I totally agree with you, Susan, that getting Faslodex once a month is much easier than this medication every day, if just for the reminder of our illness. So sorry you're so beat, too, and I hope this week off brings your counts and energy back up.
My son and wife and dog are coming for the weekend- down from Davis to us in LA, so I'm really excited to see them. My daughter and BF who live locally are visiting his family out of state, so it's especially nice that son will be down so it's not so lonely and the house isn't so empty.
Scan for me scheduled in two weeks, so I haven't really been stressed about it yet, but I feel for you who are waiting. I also am really looking forward to seeing some positive results from this drug! Crossing my fingers for all of you. {{{... big hugs...}}}
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Getting a CT with yesterday after several years of PET-CTs was so easy and quick I could hardly believe it.
I wish my onc's office would call me with the results of the report, but he told me a scan or two ago that they won't and that I should call them.
Why am I so reluctant to do so? I don't think it's that I fear bad news, because for some odd reason I think I'm okay. It's partly because I don't want to be "that patient," the pest. I also want to be in control and have read the report before I get the news from someone else. Yes, this includes my doctor.
I realize this makes no sense and is nuts, particularly since I won't receive the report from the imaging facility until well into next week, if ever.
I guess I'll call this afternoon.
Sigh,
Temporarily Trepidatious Tina
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Sorry, posted on the wrong thread. Irrelevant content!
Tina
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susan_02143,
I totally get the daily reminder thing! I've been suffering major fatigue as well. My white cell count wasn't horrible (2.6), so I'm continuing with the 125 mg dosage. Looking forward to 7 days off starting on Sunday. I sure hope this drug is working, I have scanxiety and my next scan isn't even scheduled yet! Wishing everyone peaceful thoughts.
Celeste
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Lynwood-great news-thanks for sharing.
Romansa & Myra- I know how hard the waiting is! I now have to wait another 3 months for new scans to see if the 2 new spots on my spine are BC or not! Trying to stay really busy and strong but it isn't easy!
Sandilee-enjoy your visit with your son and daughter in law's visit. That's great that they're coming!!!
Thank you all for being so helpful!!!!
Babs
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MY MO JUST SENT ME SCAN RESULTS! STABLE BONE METS WITH MARKEDLY IMPROVED RIBS AND STERNUM. HAPPY FOURTH OF JULY! 🎉🎊🎉🎊🎉🎊🎉🎊 Myra
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Lynnwood and Myra, Great news!!!!
Met with my oncologist yesterday. It was a relatively short meeting. She indicates that she is very pleased with my blood work and how my body is responding to this drug. She looked into my mouth to evaluate the tenderness and called it mucositis. I guess this is what is affecting other sensitive tissue on my body such as my nose lining and [TMI alert] my vaginal area. I am to start using a mouth wash made of baking soda and salt, but no mention of how to help the other areas. She is a bit concerned about the bottom of my feet. Anything that could affect mobility is a high priority. She says that we could add Gabapentin, marketed under the brand name Neurontin, but would prefer to hold off so we can isolate how the Ibrance and Femara are affecting me during the second cycle before adding another drug to the mix. I agreed since the discomfort is not all that great yet. She hopes that the 7 days off will give my body some energy to reverse this tenderness.
She stated that my blood work indicates that my bone marrow is still working and so she is optimistic that I could get a long time on this drug. Of course, that only matters if it is working. A very upbeat meeting. The traffic pre-4th was horrid and it took me forever to get home. A minor annoyance after such a positive meeting.
*susan*
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Myra, WONDERFUL news for you!!!! So happy for you!!! Celebrate !!!!!
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Hi all,
I'm on my first circle of ibrance and femara a nd I don't know what to expect.
I hope it works for us all. I had CT scan two weeks ago and there some little spots on my liver and my back so the Dr ordered a PET scan and I had yesterday.
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So happy for you Myrs!!!!!!
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So good to hear all the good news and reports!!!!!
theziz...keep us posted
*susan* baking soda and salt has helped me a lot. Gabapentin made me feel really super tired. Not on it any more.
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Theziz, good luck on your first cycle. I didn't have a lot of issues on these drugs, mainly fatigue. My WBC count did drop as my onc warned me and my dose was reduced to 100 mg for the second cycle. I am currently on my 3 rd cycle with fatigue being my main side effect
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Theziz, welcome and good luck. We all have had a myriad of SEs mostly fatigue and flare pain. My biggest gripe is the side pain and constantly runny nose and eyes. Sometimes I feel like a coke addict...LOL. My fatigue has been managed quite well with supplements.
Have a great 4th all the Americans out there (and non Americans) have a hot dog and beer onme. Myra.
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Myra-Fireworks tomorrow are for you! Oooh and Ahhhh!
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and....thank you all for the good wishes. Myra
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theziz- I am just starting my third week in a first cycle on Ibrance and Femara. So during the first two weeks, I have not really noticed any side effects. Maybe they will hit next week! I get blood work done just after the 21 Ibrance pills so I have nothing to report about my levels yet. I am a newbie here so maybe my input isn't worth much. Good luck.
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Myra, what supplements do you take? Welcome Ellelou
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Astralagus 2x/day between meals, Vit C 1000 mgs 2x/day, Ashwaganda 2 x/ day, Maitake drops 8-10 drops 2x/ day. This was outlined ny Pearlady and my Integrative MD.
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I'm on cycle 6 starting tomorrow Just feeling fatigue, aches and a runny nose which I didn't know was from the meds until just now. I thought I had developed allergies
Bab
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Myra, do you order these supplements or can they be purchased at any store? Very interested since I am planning on going back to work. I am a nurse and my job is very physical, I am afraid the fatigue will do me in.
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I order from Amazon. Astralagus and Ashwaganda are the Gaia brand. I take Ester C, lower in acid 1000 mgs, Solar Ray. I just started the maitake drops and can't remember the brand off the top of my head. Myra.
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Really great news, congratulations Myra!
End of 4th Ibrance/letrozole cycle, exhausted but gearing up for the fireworks tonight. Enjoy the 4th everyone!
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Myra, I am so excited about your scans. That is great news.
I start Ibrance with Faslodex next week. Have to wait for the pre authorization, then the pharmacy has to order the meds. I had been taking Xeloda for the past 6 months and it had been bringing my tumor markers down. June 2014 the CA 27-29 was 549, the CA 15-3 was 647. My onc has tried 4 other drugs before Xeloda and none of them worked. Xeloda did a great job of getting my numbers down to CA 27-29 to 307 and the CA 15-3 to 190 but the last three blood results show they are creeping back up so that is was the change to Ibrance and Faslodex. Praying the side effects will not expose their ugly heads. Hang in their ladies we can do this.
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So I was unable to get the Ibrance 100 mg before the holiday..due to needing a prior authorization..So here is what I did.
I took a capsule from the few 125 mg Ibrance that was left over when they took me off that dosage. I took the 125 mg capsule and took a sterile needle and cracked the outside of the capsule. I shook out some of the yellow powder until I thought I had approximated a 100 mg left inside the capsule. Then I took it with water. I did not want to lose these few holiday days without meds since my doctor had restarted me. Anyway, that is my new idea to not miss any days. Of course I expect to get the 100 mg tabs delivered on Tuesday so it was an idea whose time made sense. Happy 4th everyone. Carolyn from Music City
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Carolyn:
I understand your desire to keep taking the Ibrance but compromising the capsule integrity is not a good idea. There are lots of warnings in the drug literature not to swallow a capsule that appears.cracked, broken or damaged in any way. We need to remember there is a very potent chemotherapy drug in that pinkish capsule and it should be handled carefully. Try to be patient and just think of the wait time for the 100 mg as your off week. I totally sympathize with any frustration the pre-authorization is causing you.
Celeste
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Hey all. Really disappointed today. After two months of waiting to start Ibrance due to insurance denial issues (which are still unresolved), I finally started Ibrance two weeks ago on a free month sample from Pfizer. Had labs today and my absolute neutrophil count (ANC) was so low I had to stop the Ibrance after just two weeks. I can't resume it until my levels go up and at that point, will be put on a lower dose. I have no noticeable symptoms and otherwise feel great. My white blood cell counts were low to begin with (I believe from the Aromasin I am taking), so I wasn't going into this with great levels. But I feel so strong and full of energy. It is hard to understand that I have such a critical issue going on in my body with no side effects. This is depressing. I felt such an added peace of mind being on Ibrance.
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JFL,
How disappointing! I have never heard of aromasin affecting blood counts that way, but doesn't mean it doesn't. How often will you have your counts drawn? What number do they want to see in order for you to restart the Ibrance?
Really sorry that this has happened.
*susan*
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JFL, that happened to me first round. Stopped on day 15. Platelets and ANC awful. Waited 10 days and restarted on 100 mgs and have been fine. I have thought the same about my body. Sometimes I feel just fine and my CBC doesn't agree. Stay tough. Myra
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JFL, don't be too discouraged by the wait. Look at Myra. Her recent scan was great! Yay Myra! And she had a break on the drug. I actually started my Ibrance a month late, Due to a previous scheduled surgery, so my markers were up on the first go round of blood tests. Well, had second cycle blood work and markers already showing signs of improvement. Yay me! And I was also dropped to 100 after that first cycle to to low WBC. Hang in there.
Now if I could just get a grip on this darned insomnia.
Stefanie
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Hope, happy fourth ! I can't wait to hearhow your scans look. You had asked me about the pain that my Onc had commented on. I didn't get into great detail with him about it but it was something about the breaking down of the cancer clusters that caused the pain flares. Ask your doc, but I'm hoping a good scan may confirm that. Enjoy your family today.
Stefanie
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Thanks for the encouragement, all. I don't know where my levels need to be to resume treatment. I should ask. I am on a schedule of labs every 2 weeks for Ibrance but will go back in 1 week due to current status. I know that the issue was my ANC was .9 (needed to be at 1.1 or higher). My WBC was low but still okay.
I am also nervous because I am still waiting to hear back on my insurance appeal. The cancer center has spare 125mg pills for me to use until insurance goes through (due to all the patients needing to lower their doses). Not sure about 100s.
I hadn't heard of aromasin causing low WBC either but mine dropped when I began my Stage 4 treatment. The oncologist never mentioned it, as they were only slightly below normal range and sometimes would be at the low end of normal. My husband and I noticed on the lab results and I researched all the drugs I was taking and the only one that mentioned that it could cause lower WBC was aromasin.
Happy Fourth, all! Glad to hear about some positive scans and hope they continue for everyone.
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JFL, my ANC is also .9. My WBC about 2.0. My Onc consulted a Dr Finn at UCLA who is supposedly one of the experts in Palbo (Ibrance). He told my Onc not to lower my dose beyond 100 unless my ANC drops to .5. I also asked him about traveling with low WBCs and he said he isn't worried about anything (as far as my being extra susceptible to picking up illnesses) and that his only concern with low WBC is if I was having a surgery, due to possible infection.
Good luck with your insurance. It took my appeal a whole month, then we started making phone calls and putting pressure on them, until they finally came through.
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JFL
Get our MO involved in working with the insurance co to get the Ibrance approved. Mine did and then it was approved on appeal thanks to her.
Wishing everyone a great 4th!!!!!
Babs
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JFL, try not to worry -your neutrophils should rebound with a short break. Mine were at .49 early on, but they came up quickly (still on the low side, but fine) after a few days break and I am still on the 125 dose (just finished 4 rounds of Ibrance/letrozole). Good luck resolving the insurance, make sure you ask your doctor's office for help on that.
Enjoy the holiday, everyone!
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Seems like many of us have been lowered to the 100mg dose. I wonder why they don't start at this dose and then increase to 125mg if the counts are good. My onc is very satisfied with the 100mg dose and said this is the dose for me. Counts drop but rebound very well on my off week.
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I'm on the 125 dosage. My counts dropped just slightly but not enough to make a difference or a change.
Babs
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That's great Babs!
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That's great Babs
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hello,ladies,I didn,t ask my Dr.,how long we must take "Ibrance"?
today my 3 day-have headache
happy Independency Day!
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I'm guessing, like all of the others, we stay on it til it stops working (in other words, until progression).
Hopefully it works for a LONG time.
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STefajoy, I just asked my onc this the other day and her answer was "As long as it's working..forever."
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I am on the treatment for life program. I will keep taking Ibrance for as long as it is working. [May this be for a very long time.]
*susan*
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Myra- I just read the news about your scan! That's fantastic. I'm doing a happy dance for you! We are sort of on the same schedule in that I had a longer break between my first and second cycle, and I'm also in the reduced dosage. I'm really hoping I can duplicate your great results. :-)
Susan- I'm glad you had a good conversation with your doc and I hope you can get the side effects under control soon.
Welcome to all the new posters. I hope the information here gives you some comfort.I love all of this good news, but I'm a bit perplexed at the trouble some are still having with insurance companies. That must be so frustrating.
My son has been here so I haven't been online very much. I've been having a great time catching up and not thinking about cancer. It's been a nice respite.
I hope everyone is enjoying the holiday and time with family.
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Yea Myra!!! So so happy for you!
Happy happy day
:-)
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Thanks for the info on your experiences, Holly, Babs and Stefajoy. Babs, great news your levels are hanging on!
Stefajoy, I am glad to hear about what you doctor is telling you about your levels since they are similar to mine. And a relief your doctor isn't worried about travel. I am traveling for work in a few days. It seems like what your doctor says is consistent with the Ibrance instructions for doctors.
I suspect that my DH had an influence on my MO stopping me. My DH is a doctor and sees my lab results before I do. He saw the low levels, freaked out and called my MO directly. He is worried about the risk of infection because he has seen serious infections from low immune systems over the years. If I would have spoken to my MO, I would have pushed him to keep me on it and not lower the dose just yet. I don't meet the criteria for stopping and lowering the dose, based on the Ibrance instructions.
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JHL, more things in common.. My DH is a doctor as well... Derm. At least my skin is good. Lol.
He often sees my results or talks to a doctor before me. He the one who broke the news to me about my April scan that showed progression. He knew even before my Onc. He's a good guy, takes care of me and I am SO blessed he is my DH.
Just saw an awesome fireworks show over Crowley Lake in the Eastern Sierras of California. Also took an incredibly beautiful hike (not far from Yosemite). Nature is so calming to me. It's been a good weekend.
Stefanie
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JFL and Steph both your DHs are MDs and you guys are having problems with insurance? I am so blessed with my insurance! So far they have rejected nothing. (Maybe I shouldn't jinx it ). I pay a fortune since my DH and I are self employed. You two are very lucky to have those men in your life to take care of you and watch out for you. I am too.
Yesterday really was a red, white and blue letter day! Had friends over, made dinner, had wine, watched fireworks and just enjoyed. I felt like my old self. Now this week it is back to exercise, no more excuses.
Happy Sunday all...Myra.
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Myra,
That is good news, indeed! So happy to hear! l
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This is a brand new diagnosis. I found the lump in my breast January 2014 and my doctor told me not to worry and it was a cyst and that it would probably just go away. I trusted him and therefore I didn't question him. He never sent me for an ultrasound or scan. Fast forward to April 2015, I have my annual exam and he does a breast exam and now it is a concern. On April 29th after an ultrasound, mammogram, and biospy. I was told I had poorly differentiated IDC and high grade DCIS in a mass about 2cm in my right breast. So it was recommended I get genetic testing done... I did... Everything came back negative... No family history. My onc ordered a PETscan on May 11...on May 15th met with plastic surgeon set the date for the bilateral mastectomy. PETscan took forever to be scheduled. May 29th was the day... I was so nervous... June 1st my onc called and said don't stress but two small areas in your liver lit up and she wanted an MRI. It was then in my heart I knew. One week later , June 8th... She told me it had metastasized to the liver. Utter devastation! Liver Biopsy done on June 11th.
Monika
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mdillard,
We share a dx date... I was diagnosed on June 8, 2005. Ten years later, I am still here, though now with mets. This will take time to digest. After my progression, I spent about 6 months in my "deer in headlights" phase. But, I still work full time. I am lucky that my first treatment protocol gave me 5 years with NED. I have great hopes for Ibrance. Maybe I can get another 5 years, or at least something close.
Welcome.... sorry that you needed to join us.
*susan*
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Thanks Susan! I look forward to all the guidance and advice as I know no one physically who is walking this journey with me!!
Monika
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Steph, so funny about our DHs! It is definitely convenient for a lot of this treatment stuff. And like you mention, he also sees my results before my MO . . . . because he is checking, waiting for them while the MO is busy with other patients.
He has been great with all this. He ultimately "diagnosed" me - he had been worried for months about metastases and had me run blood which revealed hypercalcemia. One minute, I am at work giving a presentation, the next I am driving to the hospital to be admitted for hypercalcemia treatment. I feel fortunate as well.Myra, I wish my DH had the "in" with the insurance approval! Insurance is through my work. And company is self-insured. It is very odd, I have to deal directly with a colleague that I work with on business matters on this appeal. I feel so violated that I have to give all these details to someone at work. I haven't told people at work and am not sure if/when I will.
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I just got back from a much needed vacation in St. Maarten and haven't been able to catch up with everyone yet. Myra great news on your scan results. I did a definite happy dance and had a pina colada on the beach to celebrate. Lynnewood great to hear your good news also!
Monika sorry you have to join us here, but you will find so much encouragement and a wonderful group of knowledgeable women. I also was misdiagnosed originally way back in 1996. When I was diagnosed 18 months later with Stage 3 I was not given a great prognosis. So I searched for an onc who would treat with both conventional and complementary treatments and had a more positive attitude. And here I am almost 18 years later. I still work full time and still lead a very active life. I met a woman in my onc office recently that was diagnosed with liver Mets in 1995 and she's still going strong. So many new treatments. Hoping you have many years on Ibrance.
Interesting that while I was away I had no sleeping issues which I have had continuously at home. I go tomorrow to have my blood work done. I feel great and had no fatigue while away, so hopefully the counts are good.
Hope I've been thinking about you and am hoping to hear some positive news. Hoping that your pain is better and you get good results also.
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Myra, so thrilled to hear your good news!!!!! Sounds like you had a great time on vacation, Dorothy, you deserve it! I got back from Big Bear Lake this afternoon. Gorgeous firework display and fun with friends this weekend. Perfect distraction. Having another high pain day today, so anxious to get results of my scans from last week. Really hoping there is a good explanation for days like today!
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Hello. I was just diagnosed with a malignant pleural effusion and some positive nodes after 5 years. I was stage I originally and had chemo, tamoxifen x five years, and a bilateral mastectomy....who knew?! Anyway, now that I am Stage IV my oncologist has put me on arimidex and is trying to get me approved for ibrance. I really hope I can get the help. I had to get on temporary SSDI the first go round due to cellulitis and MRSA, as well as many surgical complications. I have been working as a pedicatric nurse for the last 2 years and I will have my BSN in just two more weeks. Great timing, right. I have medicare, but no prescription coverage, so they are hoping that will be the loophole for Phizer to cover the med for me. I will be devastated if I don't get approved. Anyway, I wanted to get some information of ibrance so I am hoping to get it here. Thanks ladies.
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Welcome Monika and Allison. Sorry you are here, but we are happy to support and help you along. Monika, the mis dx is disconcerting. I hate it when doctors tell you not to worry w/o the proper testing.
Dorothy, glad you had such a wonderful time! I missed you! Hope, fingers crossed for good results. Sounds like a nice weekend for you also.
Interesting when we are away from the daily grind we can sleep, and enjoy life. Are we putting ourselves under so much stress?
Wonderful day to all, having blood counts today, though I feel great. Xgeva as well and I think an exam. Going to speak to MO about spreading out bloodwork. That stress is getting to me.
Myra.
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Thank you Myra!! Hope your blood counts turn out good. I go for my first bloodwork on Thursday.
Monika
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Welcome Monika and Allison! I am also new to stage 4 only since April. On my 3rd cycle of Ibrance. Only 2 things I can tell you for sure...my onc is very excited about this drug and very optimistic that I have many years left, and the information that you will learn from these ladies will be invaluable.
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Monika,
Very sorry to hear of your diagnosis, it is a shame since it sounds like the doctor dropped the ball, and early diagnosis is so critical. I have learned that we need to question everything (just had the wrong scan done last week and need a redo this week -they would not have known if I hadn't asked questions, and I have a great doc and hospital, but they are getting very crowded). When I first had the lump 7 years ago, it was summer and the doc was on vacation, etc.. but I should have insisted that I be seen right away since it had already spread to 12 nodes. If I were you, I would try to find the best doctor available in your area - you can usually check their credentials on the hospital website, talk to patients, etc…
Alison, good luck getting approved, and I think you will find a lot of useful info from the ladies on this site, it has really helped me.
Treatments are improving, thank God, so stay hopeful and keep a positive attitude since that is half the battle. Good luck with Ibrance and your treatments!
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Hello everyone,
Not sure if I have posted on this thread that I am taking Ibrance 75 mg with Faslodex. . Such a poor memory, plus when fatigued I just pop in and out without posting. Today is day one of my first cycle off week and very curious to get labs done. I've started my summer break July 1 and it seems that I am more pooped than usual at the end of the school year. Spent entire day in jammies yesterday. Seems like I have one day of energy the next zip. Going tomorrow for blood draw.
Welcome Monika, Lynnwood and Allison.
Hope, I've been following your story and I'm wishing you some good news. Glad to hear of your weekend away.
Pearlady, I once had a psychiatrist friend point out that when we take a vacation we "vacate" our minds. I'll bet that's why you slept.
Myra, wishing you good results on your blood work.
Stefajoy, nature is incredibly important. I'll be spending a week in Mt Hood Oregon the first of August hiking and taking in the incredible green.
Be well,
Lisa
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Tonight is the last night for Ibrance for 7 days. I have not had any side effects and get blood work next Tuesday. I'm anxious to see what my counts are since they were always lows when I did chemo in 2011. My dx was June 5 and I am so happy to see so many women who are living years with productive lives. When I met with onc he made it sound like the end but then second opinion with head of breast cancer for our area and she said Ibrance is showing great results and when it quits working then there are other things to try. I have a tumor on right ovary and mets in the peritoneum. I have a call into the doctor to get a drain tomorrow. Other than the pressure when the fluid builds up I feel fine.
Wishing all a happy Monday.
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Allison and Monika, Welcome! I wish all good things to come your way and hope for good news with the Ubrance!
Alison, We have much in common. I was a pediatric nurse for many years before I went in to nephrology nursing. I was working on my BSN when I received my first diagnosis. (I was stage III) and I finished and continued working.
I have part A and B Medicare, but no part D and there's been no prob getting Ibrance covered. So, don't worry unless you have to. Keep that negative energy away!
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Lisa I love that. I guess I did "vacate my mind". But honestly its back to work today and I didn't sleep as well last night. So your friend is probably right. Mt Hood sounds so great. I love nature also and find it so healing. I'm curious why your onc started you on Faslodex and not Femara. Is that because you had Femara previously? Hoping for great results for you. My onc has told me when/if this combo stops working he will switch to the Ibrance/Faslodex.
Holly cannot believe you had the wrong scan done. Unbelieveable. How does that work with insurance? I'm wondering if my insurance would pay for both.Hope your weekend away sounds great. Now just wanting to hear good news from you. Have you been back to the Sauna?
Have a great day everyone. Its beautiful in NYC today.
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Haven't had time for sauna lately, too much vacationing! I'm going to call and schedule some sessions today. Feeling anxiety this morning and need to get my mind off it!
Hope everyone with blood work and scans gets a little good news. Hang in there everyone!
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Hi Monika, Allison, and Lynwood,
I agree with you Lynwood that the advice from the ladies here is so valuable to us newbies.
Monika, I can relate somewhat. I had calcifications and dense breasts that got me mammograms every 6 months for 2 years and then boom! Biopsy, MRI, mastectomy, CT scan, Liver MRi, Spine MRI and spine mets biopsy all since April. I am in my third week of Ibrance and Femara. I get my first blood work done on my off week. I feel fine physically (no se) but mentally I still can't quite believe what has happened.
What's the Zoladex for?
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Hi All ; The nurse in my doctor's office is trying to get me approved for Ibrance. I've already picked up my Femara, and have started taking it already. The process just started on last Thursday, so hopefully I'll hear back from her soon.
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Welcome to all the newbies here! I hope Ibrance is easy on you and that it works for a very long time! There is so much excitement about Ibrance and time will tell if some of us can get a few extra years taking it. I have felt lucky to be one of the first to get it after FDA approval.
That said, it looks like I've got another "significant progression" in the works. I had 3 MRIs and they all say "significant progression" since my last scan 6 months ago. This will probably mean I need more scans to see where else it might be hiding. MRIs are very specific and mine were one of L and T spine and Pelvis. My low blood counts are probably due to "complete replacement of normal bone marrow" in many places. That will make it hard to choose a treatment because my marrow is being effected so heavily. Anyway, looks like my increasing tumor markers were right on.
Ok, going to find something to distract me a bit. Decisions need to be made soon, but not today.
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Anybody taking Faslodex and Ibrance?
Lots of scans scheduled for re-staging mets in spine, lumbar and ribs. Found a nodule on my thyroid which will be checked out as well. Having lots of pain in my upper ribs, but can't have more radiation.. I've already had IMRT and SBRT and can't do it a third time. Feeling anxious about that....thanks for "listening" ladies...it helps. You are all an inspiration to me.
Hope, when do you get your results?
Linda
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Hope, I don't know what to say or how to comfort you. My heart wanted so much for your scans to show NO progression. I can only pray that the next tx will do the trick. 💗💗💗Myra.
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Hope
We must have posted at the same time. I'm so sorry to hear about your progression. You are in my thoughts and heart.
Linda
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Hope and Linda
I'm so sorry to hear of your progression. There are no words other than we're all routing for you!!!
Babs
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Hope- that really really sucks. I wish MO's would listen to patients because we know (pain, N/V, feeling sucky longbefore the scans show.). I am so very sad that Ibrance didn't work better. I am worried because I also have ILC. I have read and listened to this site since you started it.. hopeful.
I also just got major progression into my omentum and peritoneum, more in the bones, new crap in the R lung and liver. I had 4 liters of fluid drained off last Wednesday and will go in tomorrow for more to be drained. Malignant ascites has a poor prognosis 2-5.9 months. My MO said he was trying to get approval for something and I don't see him until Wednesday. I have asked repeatedly to try Ibrance and have been shot down every month. I am afraid it is too late now with the wide spread jump out of my bones and into my gut. I have no clue if Ibrance will even work given the wildfire going on. If I am allowed to try it I will. It is pretty depressing to not even be allowed to try something given the circumstances.
I hope the drug works for everyone else. Prayers for us all.
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Hope, very sorry to hear of your progression. Hopefully your onc will have a new plan. Decisions are hard, no easy answers. Just know that we are thinking of you during this difficult time.
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Hope,
Not the news we all wanted to hear. I am devastated for you.
*susan*
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Hope, I'm so sorry that you didn't get the news we all wanted for you. You are in my thoughts. I hope you find something very distracting until your dr has another plan for you.
Rosevalley I'm sorry to hear of your progression too and hopeful that what you try next works well. It will be interesting to see i f Ibrance is allowed.
Linda, I'm on Ibrance 75 mg with Faslodex. The low dose is due to my poor tolerance of afinitor.
Pearlady, yes, my Ibrance is paired with Faslodex because first line treatment was with Femara.
Hugs and encouragement to all of us.
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Hi All : I'm hoping that these are just minor set backs for you all. My scan on the 25th showed my spine, pelvis are just riddled with legions. I have ILC in my supposedly would have been my good breast. I wished I hadn't listened to my Oncologist when I wanted a mastectomy and pressed him to get it done ! Maybe it would have helped or maybe not. It's too late now, it's already in my bones.I hope those with progression will get something that works soon ! -
Since I am premenopausal, the Zoladex is to shut my ovaries down and put me into menopause.
Monika
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Lindalou and Rosevalley, I am so sorry for your progressions as well. Hopefully you will find health and a tx that works! Myra.
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I'm so sorry for your progression, Hope. And Rosevalley too. I've been following this thread from the start, as Ibrance was supposed to be next for me. Ibrance and what, I have no idea, but it was temporarily shelved because of progression. So I'm on chemo but the goal is to get back to the anti-hormonals. This thread is very informative, thank you all.
And I must echo what Rosevalley said about MO's listening to us. I was in pain for over a year (ribs/spine) but nothing was showing on scans. Specifically, CT scans. But I had a bone scan and MRI last year too after complaining, complaining, complaining to my MO and they were clean. But the pain was horrible and I just KNEW something was up. Sure enough, a year later mets to spine and ribs appeared on a second MRI. If you're in pain, listen to your body and insist on those scan(s)!
Wishing you all well, and I hope to join you all on Ibrance soon.
Rose.
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Hope, I was really praying the pain was a good thing in your case. I am so sad that was not the case. I hope you can find the right treatment to slow this shit down. I want you to be ok.
This thread has been busy. I'm a little concerned about all of the progression. I mean, wasn't this supposed to be THE drug? I'm a little anxious now.
Monika. I was also misdiagnosed... For a year and a half they let my cancer grow, saying it was nothing, until it was stage 4. I wish I knew then what I know now... Oh well too late for me. I am one of the rare women who actually sued the doctors for delayed diagnosis......and won. (Although ultimately I don't consider this being a winner).
Monika, are you not having any other chemo? Only the Ibrance combo? This is interesting.
Intothewoods, you are the first I've know on the Ibrance Faslidex combo. I hope it works well for you.
Stefanie
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Hope, you have amazed and inspired me with your strength and sense of humor through all your pain and suffering. You've helped me and so many other people with this thread, and I'm praying that now the doctors can now pull out something else from their bag of tricks that will help you.
Lindalou and Rosevalley, praying for you, and for all those suffering pain and progression, and difficult treatment decisions.
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Hope I am so sad about your progession. Certainly not what we wanted to hear. Have been praying so hard for you. Now praying that your Drs. find the right treatment for you. I know first hand how disappointing it is to fail on a drug.
Linda praying for you also. Very disappointing and disturbing.
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Hope, I just read your post that you've had progression. I have been dreading to hear this, worried that was the reason for all the pain you have been having. May your next treatment just clobber this stupid cancer.
Maybe they can check Her2 status again? Woodylb on the liver mets topic tested negative twice with FISH, but positive with CISH, which opened up new treatments for her.
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Hope, Lindalou, and Rosevalley, I am so very sorry to hear about the progressions. I've been praying and will continue to do so. But, jeez, stupid cancer! I wish each of you better success with the next treatments. There are so many stories out there of women who were in really bad shape and the next treatment was the one that kicked it back and I pray that's the case for you
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Yes, Lindalou and Rosevalley, too, I'm sorry to hear reports of progression. May your next treatments work amazingly well!
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Finished my first cycle of Ibrance last night, now 7 days off. Is there any way to tell if counts are down, do you have any symptoms? I have a doctor appt next Tuesday but was just wondering if there is a way to tell.
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capinva, we all have different symptoms. Some have great fatigue, some have lightheaded symptoms and some of us really have nothing. You will get to know your own body. Myra
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Capinva, I just have some fatigue the last week of the cycle. Feel better on my off week and counts go right back up. Not really having any other side effects,
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Hope I know that we discussed the possibility of Her2nu. I think it's definitely worth to push again for all of the testing that you can possibly get. You may have to get both FISH and CISH, as Her2nu is difficult to detect with bone mets. That would open up so many options for you. WIth herceptin and Aromatase inhibitors I had almost 6 years NED. There are also other newer options for Her2nu.
Praying for you.
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Thank you everyone and yes, pushing for more tumor testing is high on my list. I haven't responded favorably to hormonal therapy and that makes me suspect there is something more to this. I've had FISH done 2x, but the last was a bone biopsy and wasn't a sufficient specimen for the test. I have this enlarged node in my neck, but I know needle biopsies aren't the best for this type of testing either. Will have to see what else comes up in scans to see where I can get a good biopsy.
Rosevalley, sorry to hear what you are going through. I hope you get an opportunity to try Ibrance. We have seen positive outcomes right here on this thread. Hoping you are one of them.
Lindalou, hang in there. Make sure you address the pain and don't let it get out of control.
To everyone in Ibranceland, please don't let my outcome lessen your hope for this drug. There are many here having very positive results and why wouldn't you be one of them? Going down this stage IV path is difficult, to say the least. Having hope or faith that there is something that will give us a reprieve from the physical and emotional pain is the most important thing we have. So don't let anyone call you a fool for hoping, or having faith that maybe, just maybe, everything will be alright. My hope has been shaken a bit, but I know how important it is to hold on to hope!
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Hope,
I looked at your signature and noticed there are several chemo regimens you have not tried! I am starting on Ixempra today. Not looking forward to se's, but planning on sticking to it as much as I can. I have not had chemo for 4 weeks and I can feel that the cancer has taken advantage of that. I also have an enlarged lymph node on my neck. Let us know what your next tx plan is. We are pulling for you!
Hugs,
Brenda
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Thanks Brenda. You are right on the chemo. I have been very concerned with quality of life, and with ILC, it doesn't tend to respond as well to chemo. it is probably in my near future IF my blood counts will cooperate. My WBC hasn't been above 1.8 since last year, too much marrow effected. I should know more in the next few weeks.
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Hope
Thank you so much for your words of encouragement. I'm feeling a bit down. After all the fighting to get the Ibrance then fighting to get the co pay to be affordable now I'm thinking it's not doing what we had hoped. Having my blood cancer markers going up each month,and 2 new spots of activity that aren't definitive at this point is very discouraging. But what you wrote gives me hope that maybe when I have my next set of scans in 3 more months I'll have better news!!!!!Thank you so much!!!!! I needed a pep talk!
Babs
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Hope, That was such an inspiring note that you sent to "everyone in Ibranceland". Thank you. you are a such a goodhearted woman! There are still more meds to try until you get the right combination so you are right not get discouraged. We are all pulling for you, as well as Babs, Lindalou, Rosevalley and anyone else out there needing support!
On a lighter note, I stood up too fast today and fainted! I saw a little bird right up on the window ledge outside and I went to open the sheer curtain. Fortunately, I fell onto a futon we have under the window. I only bruised my forearm. It was weird. You know how everything blacks out when you get light headed? Well, it felt like the blackness lasted forever or in slow-mo then nothing. Came to with a huge headache that has not gone away. Drinking lots of water.
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Thank you Hope for those words of encouragement.
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Hope, I echo Vivian's comments. She said so much, and so much better than I could.
Vivian, that isn't on the light side- that is the light-headed side! How scary that is.... I hope that you were just a little dehydrated and that this is not a sign of something more serious.
Still tracking my boring side effects. Even on my week off it is a moving target. Will see if I follow the same pattern during cycle 2.
*susan*
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Love your play on words, Susan! I think my hemoglobin is low or I'm dehydrated. I'm still on 125mg of ibrance and it is probably too much. I get labs Thurs along with a sonogram of a big lump under my arm that is pressing on my top ribs. I will tell the doc then. I had an MRI a couple of months ago and they said it was a seroma, but it is getting huge. And its hard. The NP said "that is the least of my worries". I know it's probably true, but I wish she would not have said that. Ugh! I dread taking that trip! Anyway, the real scans are not until Aug 12...
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I'm chuckling to myself because I took my Ibrance last night still hoping it might work. I was officially taken off it today, but interesting enough, Ibrance with Faslodex was on the menu. Soooo, that may be a real option for some of you that haven't had Faslodex yet or if you had it and it worked. It didn't work for me in the past. I still may go that direction, but I'm going to have a PET scan and brain MRI before making any treatment decisions. Going to stay off everything for 2 weeks so I will be ready for next treatment. As a side note, my tumor markers went up, yet again. They have doubled in the past 5 months.
Chin up, Babs! Endocrine therapy can be slow to work, but still effective. Hoping that is the case for you
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Hope, I am so in awe of your stamina. Please don't leave us. You and I are basically the first to be involved in Ibranceland. I will miss you so much. Keep in touch, you have given us so much insight.
Vivian, at the end of my cycle I have felt like I could faint if I don't stop and breathe and compose myself.
Well, I was correct, I jinxed myself with the Pfizer copay and insurance. The $25,000.00 co pay card is tapped out and now I have to thru the appeal process or pay $5000.00 per month. Hahahahaha. Ibranceland is a yuck a minute! Good scan, oops out of money. Amazing.
Good night all, Myra.
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Myra,
It is so frustrating that on top of fighting for our lives against MBC we have to fight with insurance companies and drug companies. It's so wrong for there to be life saving drugs that people can't get. When will this change?! $5000 a month?! Who can do that?! Is it only the wealthy that will be able to get treatment? Sorry for my rant I just think about all the women who will never be able to afford Ibrance and I weep for the injustice of it and feel so helpless.
I pray for all of you ladies on this thread. I pray that you will remain hopeful, without hope what do we have left?
Celeste
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Oh Myra.... I can't imagine they would turn you down for a medication that seems to be working. I hope your doctor puts up good strong appeal on your behalf.
Hope, you started this thread and I found this forum because if that. You feel like the glue here. That said, finding the right formula to slow your progression is obviously the most important thing. I know I'll see you on other threads, or just pop in here and check on us every so often. Good luck!!
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So angry that on top of fighting this awful disease we have to fight insurance companies and put our lives in their hands. Myra it is so unfair that you finally find a drug that is working for you and now it is seemingly being snatched away. Why won't they continue to approve and what is your next step? In the appeal process will you be able to get a month or two supply? Had a sort of similar experience with Afinitor. Insurance denied after 6 months since I am triple positive and it is trally only approved for her2nu -. My oncs office appealed and they gave me two months supply in the interim. It was a stressful process but I finally did get it approved.
Hope I have learned so much from you and am still learning. You are so generous and strong even with the current uncertainty. Your strength will serve you well as you continue to search to find the right drug for you. Please keep us up to date on what is going on and what your next step will be. Since I have been Stage 1V for almost 14 years I've learned that you have to be your own best advocate and push for things you believe. My onc said that sometimes the patient knows best. I know that you will push for continued testing to get the answers you are looking for. I am just finishing my 5th cycle of Ibrance/Femara. So I feel I've been on this path with you almost since the beginning.
Praying for all of us in Ibranceland.
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Thank you for all of your well wishes and support. We truly are all in this together and I'm forging ahead right along with you.
Hope, what specific test do you get for tumor markers?
Myra, I wish you well in your appeal. I had to go through an appeal while having radiation, and had to write many letters on my behalf and many phone calls as well. I got the most help through my MO's billing office. They are on the front line with the insurance companies every day and know the language so to speak. I hope you find someone who can appeal on your behalf. I eventually won the appeal.
Yesterday my nurse gave me a big hug ( and a piece of dark chocolate) and said, " Conquer by Continuing".
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Sorry to intrude on this thread but could just not keep my mouth shut when I read your post Myra! Damn insurance! Not enough that we have to deal with that crazy disease, precious energy goes to dealing with stupid crappy rules. I hope you find a way quickly to have your Ibrance.
Linda
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Thanks gals! Last night DH and I sat down with all our bills and wrote a long letter to the appeals board outlining our monthly expenses showing how this would be very, very much of a hardship on us. This is what the rep from Pfizer told us to do. Luckily, all the 4 months that I got stopped at 18 days, I saved the Ibrance and have 12 pills left and 2 more in this cycle then 7 days off. So I have 21 days to get this straightened out I hope. Who knew you had to be a mathematician to have stage IV cancer?
Good day to all! Insurance companies s**k. You can fill in the blanks. Myra.
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This seems like such a trial for you to get this drug. Have you been told on what grounds you are being denied? Do they even have to tell you this? I am feeling so lucky to be with a non-profit health insurance that is consistently ranked in the top 3 in the country. Hope that this letter, along with pressure from your doctor's office, can push an approval out of this stone.
*susan*
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Myra what you are going through is ridiculous! . Hoping that this is resolved soon for you.
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Myra, what dose are you on?
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Hope, 100 mg
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Myra, I feel so bad that you are going to have to go through all this! Dealing with cancer is hard enough without all of this extra stress! Does your Dr office have any "samples" to carry you over until this is settled?
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Myra- I'm sorry you have to deal with this. I'm betting you will get this approved because it's working for you. I would think your doctor's office would be on the front line making this happen. One thing my onc has pointed out to insurers in the past is that denying this drug will not save anyone money ( and a 5k co-pay is essentially denial) because any alternative that would be next is equally costly- maybe even more so. That, combined with its proven effectiveness in your case should seal the deal. What a headache in the meantime!
Hope- your attitude inspires and amazes me. You know you are loved here and we're all pulling for you. I hope it helps a little bit, at least. I'm so sorry that this combo isn't working, but confident that your team will find one that does. Thank you for everything you have given all of us. You're amazing
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Well it took 6 months and a crash and burn. Specialty pharmacy has the Ibrance and will send it once final insurance approval is in. I think it's probably too late but WTH? Might also do some radiation on neck and back.. r hip. problem areas. Got headaches that won't quit.. must be from my neck, which sounds like rice crispies it makes so many crackles and pops. So here goes into Ibranceland.
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Myra, My story echoes yours...I had the first month of Ibrance on a coupon of sorts. Then two more months with CVS specialty pharmacy...Now the oncology office is going through insurance hell with a preauthorization...I would be hysterical except for the fact that I have a few 125 mg. tabs left from when I started before I was lowered to 100mg. so what I am dsoing is cracking open the capsule and trying to let a little of the powder out to make it a 100 mg tab. Yep that is what I have for 10 more days. Then I will be less than pleasant if my Rx is not filled by then. Have to keep on trying. Carolyn from Music City
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Hope,
Thanks for inviting me into this thread, even though I wasn't stage 4. You and the early contributors to this thread helped me make it through my first few shakey months of this drug. I really had nowhere else to go asI couldn't find any other lower stage people on this drug, except for one other person on this site. I am now finishing up cycle 7 with no problems and have learned so much about getting the side effects of this drug under control.
I wish you the very best finding your next treatment. You are one tough,smart cookie. THANKS again for starting this thread.
Robyn
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I am not on Ibrance, but following this thread because a good friend of mine is and I also might be someday. I am horrified by the struggle some have in getting coverage and paying for this much-ballyhooed new medication. I can't help but wonder what Pfizer hopes to achieve by pricing Ibrance so astronomically that many insurers are apparently resisting covering it. The company, as many do, also offers "qualified" folks a price break with a ceiling, rescinding the offer once a certain amount--relatively paltry compared to the advertised price-- has been reached. This leaves the Ibrance patient who took the deal and her doctor in the awful position of having to find another treatment with no other reason except she can no longer afford the Ibrance.
This seems so wrongheaded of Pfizer from a p.r. standpoint and may engender so much ill will against the company that I can't help but wonder what else can be going on. There's something here I'm not understanding.
Thoughts?
Tina
P.S. Carolyn, I understand why you would have the impulse to break open capsules in an attempt to adjust your dosage, but as someone who knows a little bit about pharmacology, I beg you: please don't. Does your oncologist know?
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My drugs were delivered this morning by a VERY cheerful UPS man. He rang the bell [almost unheard of around here] and then actually just opened the door and walked in. There is nothing on the label that indicates he should just walk into our house, but, that was our first doorbell of the day. Bloodwork is in, and my WBC is back to 4.0, and the rest of the numbers all look fine. The tumor markers usually take about 24 hrs so I am still waiting to see them. I have told myself, in a very stern voice, not to fret about them this month but I don't always listen to stern voices.
The tingling thing has now taken over my hands, and I have little blisters around the palms, particularly on my thumbs where they join the palm. Wondering if I should try one of those balm remedies I have read about on the Xeloda thread.
I have no idea why Pfizer priced their drug so high, or why any of the new drugs demand such high price tags. The new HepC drug is outrageous! I suspect that these insurance issues will disappear when it is "approved" for all lines of treatment, much like many other drugs like Neuprogen which went from frequently denied to routine. As someone who lives in bio-land, I can assure you that all of these companies have lovely office towers and very nice work conditions.
*susan*
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Tina, I agree with you 100%!!! It's like Pfizer dangling this drug in front of us and then pulling it away. This leaves both the patient and the doctor in a bad position. Carolyn, I don't want to be in your business, but I agree with Tina about tampering with the capsules. My bottle has all kinds of warnings on it about not taking the capsule if it is cracked or punctured. I believe it would be difficult to get the correct dose and too much or too little can be dangerous.
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Myra,
I had so much trouble with my copay issues so I know how you feel. How can you be denied a drug that is working? So unfair!!! I found that whenever I had issues, I got my MO's office involved and they were able to turn things around for me. Hang in there!!!!
Babs
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Hi everyone,
Long tough day - got new scans today and had my onc appointment after 4 cycles on 125 mg of Ibrance with letrozole. I was optimistic because my tumor markers declined for the past few months - not a lot, but they were trending down instead of up which was a good change, I thought (wrong). The scans, however, showed progression in the bones, and some fluid around the lung, and a new liver spot. He was surprised I have not had many bad symptoms. The doctor thinks the scans are more reliable than TM's , so he is recommending that I switch - maybe to taxol or a chemo drug (ugh!) since the hormonals only work for a few months for me. I knew the Ibrance was going to stop working at some point (also, it was a 2nd line treatment for me since I had already tried letrozole), but I guess you are never really ready to hear about progression, so it was tough news, and I am not ready to make a decision. He said I can stay on the Ibrance/letrozole another cycle till I decide what to do.
I have been so lucky to have good people helping me - I want to be around as long as possible to help them (and my kids especially need me, and my aging parents). I don't want to be a burden on them and don't want treatments that don't offer quality time. I am best when not thinking of my condition and am busy with other things, but I now must do some research on the treatments and their side effects (luckily I have good friends helping with this as well). I will let you know what I decide.
Myra and car2tenn, so sorry you have this added stress, it is so cruel of them to deny it when it is working for you. I hope you get it fixed soon.
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Holly I am so sorry to hear of your progression. Let us know what you decide to try next -praying the next line of action kicks your BC's butt!
Babs
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Holly,
Oh no.... we all have such high hopes for this drug. I understand your viewpoint all too well. Please let is know what you decide is the best treatment for you going forward.
*susan*
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Holly I am so so sorry to hear of your progression. Definitely not the news we wanted to hear. I know all too well about failing on a drug that was filled with such promise. Please let us know what you decide to do nextt. Hopefully the next treatment will be gentle and provide a long progresion free time.
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Holly- I'm so sorry to hear this. We are all wishing you the best and hoping the next treatment keeps you stable for a long time. Big hugs to you.
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Holly, I am so very sorry to hear about your progression. I am hoping the next tx works well for you. It is so strange your TMs went down and you had progression and mine went up with regression. My MO was so surprised he actually went over the scan bone by bone and soft tissue by soft tissue to make sure it was correct. It was. Another part of this Ibranceland roller coaster no one knows about with this new drug. We are the guinea pigs for Pfizer and they are making us pay thru the nose for this drug. Ironic isn't it?
Thank you all for your kind words. I do not get the reason for Pfizers exorbitant prices either. They dangle the drug in your face and if it works they pull it away so you pay to get it like a drug addict would. The only difference is this is life or death they are screwing with.
Susan, have not heard of blisters with this drug yet. Are u sure this is a SE?
MO switched me to dilaudid for pain since he did not like me having so much acetaminophen, though only 2 mgs. Any one been on this drug? I think I need a stronger dose since pain relief is much shorter than the 5 mg Vicodin I was on, but I am much less foggy and light headed.
Well, my book for today is done. Good luck all and have a pain free day. For those of you awaiting scans, these mixed results I am sure are creating more Scanxiety.
Myra
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Myra, I was on Dilauded post spinal fusion surgery. I got hallucinations but I was on IV and high doses. Saw some white monkeys which added to the fun. I use Vicodin or low dose OXY when pain escalates too much. I struggle with balancing pain management and not taking anything, but then I get behind the pain. I've used Toradol that helped for awhile. It is an nonsteroidal anti-inflammatory drug which also helps with pain. Hope you get some relief....and no monkeys!
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Thank you all so much for your help and support, I am continuing to pray for all of you and for your success with Ibrance, pain management, insurance issues, etc….
Vivian, I hope they checked out the reason for the fainting, probably dehydration but could be something else. Do keep hydrating, though, it helps with so many things!
Susan, that is strange about the blisters - maybe it is something else? Hope you get relief.
Thank you again, Hope, for starting this thread, it has helped me and so many others. Praying for answers and relief for you. Your are right, we have to keep up hope - maybe the next treatment can keep us going till something better comes along, as there are new things coming out all the time.
I will let you know all know what I finally decide.
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Just got a call from Pfizer Appeals. Been approved until 12/31/15!!! Hooray, I'll worry Insix months. thx for all your support. Myra
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Holly,
Sending you pink light
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Myra,
Fantastic!
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Great news Myra!!! That was quick.
When my Ibrance was approved in February it was for one year. So I'm hoping for two things. First that the Ibrance is still working in February 2016 so that I can deal with the lengthy approval process again. Hoping that for all of us.
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Shoot, Holly, I'm sorry. My only thought is that 4 cycles is still very early on for a hormonal drug. They tend to work slowly before picking up momentum. Was the progression significant in most areas? How long since your last scan?Really hope you can find something that works for you. Did your MO mention switching to Faslodex and Ibrance? Might be worth thinking about since the SE should be very tolerable.
Myra, I am taking Dilaudid for breakthrough. I've had it for a while, but wasn't using it much, just when things got overwhelming. However, I was taking Oxy 7.5 4x a day and the Tylenol was getting to be too much. So, I'm trying to cut back to 3 Oxy and use the Dilaudid to extend the time between Oxys. I have 4mg Dilaudid. It still only lasts 3-4 hrs. It's really meant for breakthrough pain since it's short acting. Can you get higher Vicodin, maybe 7.5mg without upping the Tylenol? I'm really considering a patch because I feel like I'm on a roller coaster all day. Mornings are so tough. I hurt so bad I don't want to sit up to take the pain meds. Hope you find something that works for you
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Myra, Hope,
I have used Fentanyl 12 MCG/HR patch which is used for 72 hours and then you take it off. It helped me when I had my spinal surgery. It worked well and the side effects are similar to Oxy. It may provide you with some long acting relief.
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Myra, great news! For all of the ladies with pain issues, I can't imagine how hard it is living with chronic pain. I have been fortunate that my pain is minimal still and controlled by Tramadol. As a nurse, I do know that many people get good pain relief from the Fentanyl patches. They are easy to use and provide time released pain relief for 72 hours. They also come in different doses that can be increased if needed. Many people report pain relief without feeling " loopy" from the narcotic in it.
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Myra-I take 2 mg and used it every 6 hours for quite a while. Now I use it in the morning and afternoon and take a muscle relaxer at night. When I took the 4mg it did make me a little loopy, but I was in so much pain that I didn't care! The relief was worth it.
Hope-Sometimes I will take it in the morning early and then go back to sleep. It makes the mornings much easier.
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I just remembered that someone asked about which tumor marker I get. It's the CA27-29. It seems to be a good indicator for me, so far.
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Hi All : I've been approved for Ibrance , I'm already taking the Femara. I have a new PC and when I went to see her yesterday she asked how long I'd had cancer and I told her since 2001 and she told me I was a miracle . Xeloda failed me, so I'm hoping to chip a few years with this drug,If not I'm prepared to try something else. All we can do is keep hoping for more time here with our families as we try different drugs and bear the side effects. I just thank God everyday for a reasonable portion of health and strength.
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Hi Mscal02. Welcome. I hope we all will get the years you are looking for on Ibrance. You will find this a very supportive group of women. Interesting that your PC told you that you were a miracle. I have been Stage 1V since 2001, but I never considered myself a miracle. Just lucky and having the right medical and support team. Xeloda didn't work that long for me either. My onc is very hopeful for the future with the Androgen blocking drugs. So I'd like to stay on Ibrance as long as possible. Its certainly more doable than some of the other treatments I've had.
Best of luck to you with Ibrance.
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hey all, my onc took me off 5/325 hydro because my alkaline phosphate is elevated. It has been all along. It started at 345 a year ago and now it is down to 200, so I am confused. It keeps my pain away 6-7 hrs and all nite,w/o problem. Dilaudid 2 mgs doesn't even do 3 hrs. I am going to insist on going back.
As for Pfizer, I had the nicest rep who told me exactly how to write and word the appeal. It worked and worked fast, so I am thrilled.
Good day to all myra
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Thanks pearlady : I've learned so much from these discussion boards . When I go in to see my Oncologist I can already have a plan before he discusses his intent with me . I have people calling me that are newly diagnosed for advise, and it's all because of these boards that I can explain the side effects from the drugs and they can have a decent and knowledgeable conversation and know what questions to ask their doctors. Whenever I change treatments, I know that I can come to these boards and get reliable information and be informed of side effects by all of you trailblazers.
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Hmmm.. just spoke to the oncology pharmacist. My WBC counts are a little low- 910 which surprised me since I'm on just 57mg. We'll see what onc says.
Myra, so happy about the appeal's success, and sorry about the pain meds thing. I would be confused too.
and Pearlady, wow! I hadn't clued in to the fact that you are almost 14 years in. That's wonderful and inspiring.
Lisa
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Myra
So happy for you!!
I had what I think is some good news today. Since March, my cancer blood markers have been steadily going up. That, coupled with the spots of activity on my spine (which are not definitive at this point) really made me nervous. Today, I found out that my markers went down (had the blood test last week) Maybe the Ibrance/Letrozole is starting to work on me-certainly hope so! Fingers crossed!!!!
Babs
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Great news Babs!!! Fingers crossed for all of us!!
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That's so great, Myra. One less thing to worry about.
Babs, good news.i hope that trend continues.
Mscal, it's true for me too. Now when I go to the Onc, I'm loaded with questions that I have because of conversations on this board. It's feels very powerful to have information.
Stefanie -
Babs great news! Hoping the trend continues.
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Interesting that you mention Androgen blocking drugs, Dorothy. I am having testing done on my tumor sample to see if these drugs might work for me. I need to learn a bit more about it.
Babs, great news!
Myra...wooohooooo!
Sorry, can't leave you guys yet!
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Hope, please don't leave! I have learned so much from you!!
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Hey Hope, how about we do an honorary Ibranceland guinea pig club! We can all stay as long as we want!
Enjoy your day all....Myra.
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Hope please let us know regarding the androgen blocking drugs. My onc also told me that if/when the time comes I will need to get another bone biopsy. Ugh. But of course I will do it. From what I've read even women who are ER/PR-' are very likely to be positive for the Androgen.
Hope we know you are not going to leave us! We won't let you. We have all learned so much from you.
Am at my onc now getting my C and D. The great news is that 2 days after the end of my 5th cycle of Ibrance my blood work is very good. Reds only slightly low. All else normal.
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Pearlady, is a bone biopsy performed?? Very curious
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Hi All: I've been approved for the Ibrance and it will be delivered tomorrow, so I guess I'll start tomorrow . I went grocery shopping today to get dinner items. I'm not a breakfast eater and lately have been drinking a bottle of Boost and eating fruit, mostly watermelon since it's in season.I can't thank you all enough for all the help you've given me before I start this drug. The pharmacist was glad to be able to breeze through the side effects with me because I told her that I had plenty of support from you all. She asked if I was lactose intolerant because lactose is an active ingredient in the Ibrance. I told her yes and I already take lactaid tablets when I have dairy. So Sam's club here I come to purchase a large box of it !
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hmm...I did not know that about the lactose. I am also lactose intolerant, but don't usually take lactaid. I just refrain from dairy. I haven't had any digestive issues on Ibrance. You might want to hold off on all of that lactaid until you actually have an issue, as you might not.
Stefanie
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Thanks Stefanie : My husband keeps a big box here because he is lactose intolerant too ! I'll see what happens with the first few doses.
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@Stefajoy... I too am seeking legal recourse!! Fingers crossed... I hope I get a favorable outcome. Yes, I am only on Ibrance+Femara and the once a month Zoladex shot... That's it. I am seeking a second opinion at the end of the month
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Monika, I'm glad you are seeking a second opinion. It's not that I think the first one is wrong, I am just used to women going straight into the hard stuff knock it out,get sick, lose your hair kind of chemo stuff. Your doc may actually be a more modern thinker, in that the hope for the future is less toxicity, less surgery, better outcomes. Ibrance may just be your saving grace.
Still, a second is a good idea.
As far as your legal recourse, we chose a lawyer who not only specialized in medical malpractice, but specifically breast cancer with a strong emphasis on delayed diagnosis. He has almost never lost a case. We had to drive an hour to see him, twice... Not so bad. Was totally worth it. You can PM me if you want more detail.
Try not to freak out. I know that is easier said than done. You are probably still whirling from the news. I'm four years out at stage 4. I feel fine and, except for lots of doctors appointments (and a few reconstructive surgeries), my life feels pretty normal.
Stefanie
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lynwood, I so appreciate you..You are not in my business at all. I went to CVS and asked a pharmacist about what I was doing (piercing a 125 mg pill and shaking some out to make it a 100 mg pill). He said it only had to do with dosage. It would not hurt me in other ways and a that was what I wanted was to reduce dosage. In addition, I have waited all week and nothing has been approved. We have TriCare and it is supposed to be a last ditch approval...Ho Hum...no one has called . So I am so happy I have had the Ibrance to mutilate down to what I think Might be 100 mg. Holly: I am astounded at TM's going down and progression happening..It just shows we do not have the full information on Ibrance....oh dear. Carolyn from Music City
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Carolyn, I am so sorry that you have to wait so long for an important medication like this! Thanks for understanding my concern. I hope you get approval soon
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Carolyn, I am somewhat confused have you tried Pfizer? Myra
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I just got a call from Pfizer today and I got approved for the Ibrance. Thank God! My onc said he was worried they might deny it because I am not menopausal yet. I did start my Arimidex and Lupron injections in the last week, so hoping that throws me into menopause soon.
Vivian- that is crazy how much we have in common. I have two weeks left and I will have my BSN....or at least that's the goal.
Thanks for the welcome ladies.
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Congrats on the approval and your BSN, hopeful34. That's wonderful. Good luck!
I'm feeling a bit down. I won't start the second cycle of Ibrance until my counts recover. How can I have low WBC on 75mg!?!?!?!
The back of my tongue is sore and I am really fatigued.
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Hi All : My Ibrance came today and I took it around 3:30. My next appointment with my Oncologist is on the 30th.if all goes well without any hitches, and I last until then, I'll have blood drawn and we'll know how my counts are. I'm starting out on 125mg. I can see me not being able to tolerate that high of a dosage. I have some magic mouth wash left from when I tried Affinitor. It was a bust after 1 week! My mouth,scalp and other places broke out with these terrible ulcers and I told my doctor no thank you sir .
Hopeful : I'm glad you were approved :
I hope that everyone else that's waiting will get approved soon !
And years added to the rest of us that's already taking it !
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okay, I am 12 days in. I have gotten blisters in my mouth and seem to have a cold, maybe? Sore throat at any rate. I haven't been around anyone who has been sick.Do you have any ideas what to do about the sores in my mouth?
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Raine-Wells- you should call your doctor's after hours number to see if they can call you in some magic mouthwash. I haven't started the Ibrance yet, but I am sure someone can chime in about your sore throat. If you have thrush, it could make your throat hurt as well. The magic mouthwash would help with that too. Hope you feel better soon.
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Raine,
I was told by my oncologist to make a mixture of 1 tablespoon of baking soda, 1 tablespoon of salt, mixed into water to wash my mouth. She suggested that I make up a large glass of this stuff and wash regularly. She was not specific about how often, but I imagined that she meant as needed. I plan to start tomorrow as I am on day 3 of cycle of 2.
Hope this helps a bit,
*susan*
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Hope, I was reading back posts and saw your results. I am so sorry. I don't know what to say. Raine
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thank you! I will start with the baking soda wash. What is magic mouthwash. That made me giggle. I go to the onc on Tuesday. I will let him know. I started out with stage 4 so I have been mostly lurking trying to figure out what all the techno speak is. I sort of feel like I'm learning another language!
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Raine: Magic mouthwash is a mixture that your pharmacist will make up for you ! Your Oncologist will give you a prescription for it . Mine wasn't covered by my insurance and it cost me $35 dollars ,but it was well worth it. I'm glad I have some left over from when I tried Affinitor.
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The Magic Mouthwash my onc nurse prescribed is equal parts Benadryl, Maalox, and lidocaine. It gave me temporary pain relief. Do call the weekend number and get the prescription going. Two days is a long time when your mouth hurts. The rinse recipe they gave me is 1/4 teaspoon baking soda, 1/8 teaspoon salt, 8 ounces warm water; use at least 3x per day. The nurse also said to get enough protein and vitamin E for healing. Also take care of your mouth: avoid food that is salty, spicy, acidic, hot temperature, or hard. I found if I cut up my food into small bites I was less likely to bite my swollen lip. Keep your mouth clean by brushing (very carefully) or rinsing after eating. After two cycles with sores, my dose was reduced from 125 to 100. No more sores so far. I am being careful and still using the rinse.
Hello and welcome to hopeful34, Raine-Wells, msCal02, and anyone I've missed.
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Welcome to all the new Ibrance users. I'm so sorry that some of you are getting mouth sores and other unpleasant side effects. I hope that your doctors will work with you and perhaps lower the dosage if it's appropriate.
I have a CT scan scheduled for Thursday. I'm on my third cycle and will be finished with my 21 days on Thursday, so wish me luck. He is just looking at the liver. I have mets all through my skeleton, but they have been pretty stable for awhile but the liver is the new area of concern. I really have no way of knowing if the meds are working, as I have no new pain but then I didn't have any before, either, while the mets were making a home in my liver. We shall see, I guess.
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I am based in India and my Oncologist in India has prescribed Ibrance which is only available in US & Puertico Rico drug self. Any thoughts of how can I get assistance in buying this drug from local chemist i.e walgreens.
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Sandilee, good luck with your scan. Welcome to all of the new Ibrance users. Just finished my third cycle with minimal side effects
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Sandilee, lots of good luck with your scans. Welcome to all the new users. Luckily I have never gotten mouth sores, so I am of no help. I definetly know nothing about India and Pharma.
Have a great nite all...Myra.
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Great news Hopeful!
Wishing you great scan results Sandilee!
And welcome to all the new Ibrance users! I've been pretty lucky. My only symptoms from the Ibrance are fatigue (but I also travel 1 1/2 hrs each way to work) and a runny nose.
Babs
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Good luck Sandilee!
My only SE so far, thank god, is fatigue, and its not horrible. I'm getting used to it.
Just ended my Ibrance second cycle. CBC (WBC) tomorrow. No scan until August after (or during) my fourth cycle.
Until then, my motto is... I'm not sick til I'm sick.
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It is good to know many of you just have fatigue. I wonder if that is the Ibrance or the hormone blockers. I haven't started my Ibrance yet, but I am exhausted all of the time. Could be nerves too, who knows?!
Sandilee- Hope everything goes well with your scan.
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Good Morning all.....
Sandilee....I'll be thinking of you on Thursday.
usha14 I spoke to my friend who used to work with the FDA. He suggested that your physician call the FDA Center for Drug Evaluation and Research and request approval for use under the compassionate care provisions. A general contact number is 1- 855-543-3784. They would connect your doctor to the correct department. Also your physician can call Pfizer, who is the pharmaceutical company that makes Ibrance. The number for Pfizer for professionals is 1-800-505-4426 I wish you luck in obtaining the drug. Best to you.
Linda
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Sandilee good luck with your scans. Hoping that no pain is an indication of regression. Will be praying for you.
Don't know about mouth sores as I've never had them, even while on Afinitor.
I do think however that the fatigue is from the Ibrance and not the Femara due to low blood counts. I was on Femara previously for four years and never had any fatiugue. Of course nerves must also play a big part. Navigating Stage 1V is definitely very exhausting.
Babs I think traveling 90 minutes to work can contribute to fatigue. I used to live in Orange County, NY and traveled that distance to work each day. Living so much closer now definitely helps.
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Hi ladies...so I am on day 19 of my first cycle. Bloodwork cameback normal. The only SE has been fatigue for me. I could tell that the lump in breast (which was never removed being diagnosed Stage IV from the beginning) does not feel as palpable as before. I take a once a month Zoladex shot to put me into chemopause since I am premenopausal... Headaches and night sweats are killer! I won't complain too much..it could be worse. Thanks to all who have welcomed me into the group and welcome to any newbies!!
Monika
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Pearlady
I move on Wednesday from Long Island into Manhattan ( where I work). I think that will make a huge difference. I've wanted to live in the city forever so in December I took s job here to push the issue on my DH. Little did I know that I'd have a recurrence late January and switch my care fromLI to MSKCC because in LI they didn't have many options for me. So excited about the move -the one negative is that we planned a vacation last year so we move on Monday and leave on our trip on Friday! Pretty crazy but these are good things which take my mind off this BC crapfor awhile! Waiting the 3 mos for my next scans will seem like forever!!!
Babs
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Lots of good stuff Babs. We need to move forward and the universe listened.
Monika so glad you are doing well on ibrance. Keep up the good work. Myra
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Monika, that's great that your blood work is still normal! My white count dropped right away and my dose was lowered to 100mg. My white count was 2.1 today but I took the last pill of my cycle last night so I expect it will go up again.
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Monika, So glad to hear that your blood work was good. First hurdle jumped!
Babs, how great to move into the city. Have you ever lived there before or is this your first foray into living there full time?
Today is day 5 of cycle 2. Just like last time, on day 4 I had a reaction to the IBrance, suddenly feeling ill about 6 minutes later. And hour later? I was just fine. The feet are tingling again, but now I know to wear shoes more often and always when I am outside. My comfort zone temp-wise has gotten really small again. Very hot and then when the air cools down in the evening, really cold. I am carrying a sweater everywhere with me, and I am playing sweater-roulette as I bounce from one extreme to the other.
The "blisters" aren't really blisters. They are little holes in my outer skin layer created by opening a textured bottle top or turning a key that has a sharper edge. At this point, they have merged so it looks like a peeling sunburn without the red. Very odd, but since they aren't oozing I am not that concerned. To be honest, I don't really have any complaints about how my body is responding, but I do like to report them to myself and my medical team.
*susan*
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Me too on the temperature thing. I'm alternating hot flashes with chills where I used to only have hot flashes. Covers on and off all night, jacket on and off all day. That's ok, but the "just fatigue" is really getting me down. But there's nothing I can do. I have to take this stuff and I am glad I can get it.
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Hi ladies. I have been creeping on here for a few months and finally am jumping into the conversation with you. I have to tell you that you gals are so helpful for us "newbies." I have found so much comfort and knowledge in your posts. I had the joy of an initial diagnosis in February followed by diagnosis of MBC two weeks later when my scans came back. I have a few spots on spine, hip, one rib, etc. (So I am following the bone mets thread,too.) I have finished my 3rd cycle of Ibrance and I am on my 4th cycle of Femara. I also get a monthly injection of Zoladex and an infusion of Zometa. My experience with the Ibrance/Femara combo has been similar to many of yours - fatigue, fatigue, fatigue, (did I mention fatigue?) achy joints, infrequent insomnia, and white counts that tank. When my white counts tank, I typically have mouth sores (using the baking soda/salt rinse and Magic Mouthwash when needed). It took 14 days for my counts to recover after my first cycle of Ibrance, but the last cycle was only 10 days. I am still on the 125 mg prescription and my MO will not reduce the mg because my counts eventually recover. We will re-scan in another month to see what's happening. I am fortunate right now that I have no pain, other than little flares every now and then. I am a wife, mother of an 11 year old daughter, and I work full time. It is hard at times, mainly because of the fatigue, but I know things could be much worse. This was overwhelming at first, but I am finally to the point where cancer isn't the last thing I think about before I go to bed and the first thing I think of when I wake up in the morning. I am living life differently now, but I guess that is to be expected when you have cancer. I am hopeful for all of us on Ibrance and for what the future holds for us with the promise of new treatments. Prayers for all of us as we take it one day at a time! Thanks again for all of the info shared here!
KKs Mom
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Welcome KKsMom. I'm happy you joined us but sorry for the circumstance.
The fatigue thing is really hard. I've been reading about how to deal with it and exercise seems to be the one thing that is for sure helpful. I do about 30-40 minutes of yoga every day but obviously that is not enough. I've also read that massage and acupuncture are helpful. So I'm on an anti-fatigue mission. I got a massage today and took the dog on an extra long walk. Later this week I'll get out for a hike. This fatigue is just too much!
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A lot of new people here, welcome! I'm taking it as a good sign that insurers are becoming better at approving this, I hope so and I hope it does great things for everyone!
I found out on Friday that my ANC is too low again, aarg! I had 1 full cycle of the 125mgs before having to stop for 3 weeks in the middle of the next cycle and back on at the 100mgs. Now I've gotten almost through 1 cycle of the 100mgs and I need to wait for the bloodwork so I can start on the 75mgs.
On the other hand, my tumor markers are down 20 over the last month after rising steadily on Letrozole/Ibrance till now, so that gives me hope.
Scans next month and I'm anxious to see what they say.
I haven't dealt with much fatigure on this, knock on wood. Hoping those of you dealing with it will find it getting better as your body adapts to the new drugs.
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Welcome KKsMom! I was another lurker before I finally joined the conversation! I have learned so much from the ladies here! I hope we can find a solution to the fatigue that many of us are dealing with. Other then that, I am feeling well. I am also following the bone mets thread. I have widespread mets in my ribs, spine, humerous, femurs, and oddly one bone in my face. I am not yet at the point where Cancer is not on my mind as I start and end my days. Still in shock hat it came back after 7 years
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Great news! After a 3-month saga with insurance company appeals, my Ibrance was finally approved to take with Faslodex and Aromasin. The social worker at my MOs office botched the first appeal so I ended up writing the final appeal letter myself.
Welcome to the newbies. More people adding Ibrance each day.
Roses, I am sorry to hear your ANC counts are low and delaying you. However, it sounds like Ibrance is working for you which is the most important thing!
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So I just got my blood work results after doing my first cycle of Ibrance (also on Femara). These two drugs are the only things I have taken. I took the test about 1.5 days after taking the last Ibrance. My WBC started at 11.9 and dropped to 4.3 and my AN went from 7.2 to 2.0.
My ON seemed happy and told me to stay on the 125mg Ibrance and I don't do another blood work for 6 weeks.
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Elle, sounds like my blood work. I thought that was really low, yet my oncologist was thrilled.
For me, not a good side effect day. Running a fever and real bowel issues. Making soup for dinner so I can take the Ibrance with some food in my stomach. Did manage a bunch of billable hours, but energy faded towards the end of the day. Tomorrow will be a better.
*susan*
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Susan--soup is good! Feel better.
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Susan, my doctor tells me every time I see her that if I have a temperature over 100 I am to call her immediately. She said we can get septic very quickly on this medicine. I hope you feel better soon!
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Lynnwood, I was told 101.5. Sitting at 99.4 right now, so have ample room to climb. :-)
The soup was good. Ate more than I thought I would and those pills are where they belong. Now more hydration since it is suddenly hot and humid here. Actually, my family tells me that it isn't hotter. But I am no longer shivering and have taken the sweater off [yet again.] I don't know which of these two drugs has broken my thermometer, but readings are consistently off.
*susan*
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Susan, I agree with Lynwood. I was told 100 also. Myra
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Interesting..... well, if I spike again and get to 100º I will call the oncologist fellow on call to see if s/he wants me to come in. Right now, my fever has gone down. Soup is happy so I am happy....
*susan*
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Monica, my onc put me on oxybutinin, a bladder spasm medicine. Stopped the night sweats completely. It has been 5 months now. I take 5 mg bid
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Ellelou and JFL, good news. Ellelou, I would be in heaven if I could go 6 weeks w/o bloodwork. Myra.
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So, it has been two weeks. I have neutropenia andmy red counts are lower but still in the normal range. 1 week to go, then a rest week. Scans on Thursday. I still have that deer in the headlights feeling after 7months.
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hello ladies, I have been avoiding this web site for a while, it brings me down too much. With that said, I wanted to share that I have been in Palbociclib /faslodex clinical trial for 1 year now. My WBC's rarely go above 4. My ANC drops every month. I have been on the lowest dose & got approved to take it 2 weeks on 2 weeks off. My last dr visit was with ARNP, which I have told them I do not prefer . I complained I couldn't say "colonial ", the name of a road I was pointing out to my nephew. The ARNP did not do a neuro exam, but the research nurse called the next day & says the MD wanted an MRI to r/o a stroke. $350 out of my pocket to say no sign of stroke. They waited until my next visit 3 weeks later to tell me that the MRI did show bone mets progression, I need to be pulled from study & try 2 new drugs that my previous oncologist recommonded against. I had high hopes for Palbociclib. Not sure what will happen next, but know I won't miss Palbociclib, I felt so weak for a week after I finished my doses. I do recommend protein drinks if u have low counts. My precious son made them for me to help bring up counts & when I drank them faithfully it made a difference
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This drug is such a rollercoaster ride, isn't it? Great news, JFL and Ellelou, and Susan and RaineWells on your bloodwork! Sorry to hear such bad news, Sue2009 and Susan on your fever, and pretty much everyone on the fatigue--but still glad it wasn't a stroke, Sue, and the fever and soup stayed down, Susan.
I feel like Ibrance is all the confusion of metastatic cancer (what's going on, what does it mean, what does the future hold, what's normal and what's a bad sign) all rolled into a really tight timeline. Definitely not for wimps, I guess
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Roses, that's the exact reason I named this drug Ibranceland. It is a roller coaster of turns and twists and we never know what is around the next bend.
Susan, glad you are feeling better and Raine, good news on your bloodwork.
Sue2009, I am sorry for your outcomes, but don't get where you say WE ARE negative?? I believe this is a grand group of knowledgeable, bright, lively women. Too bad you didn't join in, you would have seen that.
Hope your fatigue subsides today. I have been blessed not to be affected too bad with it. I hate to preach, LOL, try supplements. Have made a huge difference in mine and Pearlady's life. Read back several pages for all the advice.
Hugs, Myra
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I totally agree with Myra. The supplements have made a huge difference in my life. My counts, while sometimes a bit low, are never as low as what they were initially and what several other women have stated. It makes sense that if your counts are closer to normal you will have less fatigue.
I would echo what Myra said, look back several pages where we speak of the supplements which help your blood counts. If anyone has any questions would be glad to provide additional information.
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Myra , u miss quoted me, I did not say you are negative, I said when I come to this site it brings me down. I have 5 sons, 2 still at home. We do not discuss feelings in our house, & we definitely do not discuss my cancer. They say that's what works for them. I seriously doubt my sons' friends even know I have cancer. We recently lost a beautiful 20 yr old niece/cousin to suicide.Depression runs in our family. When I 1st came to this web site I noticed I became more depressed. My husband said, "for God's sakes, don't go there" So I avoid this web site until I feel I need to hear what others are going thru. I have been dealing w/cancer over 7 yrs now, my niece's suicide has removed death's sting for now. Being told I could no longer do Palbociclib came at a very bad time.
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Sue2009 just told us in some detail that she is in a tough spot; Palbociclib has failed her. She began by writing that she has avoided visiting the site recently because "it brings me down too much," which is understandable considering her circumstances. I don't interpret this as her implying those who post are being "negative."
Tina
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Sue3009 sorry I took your statement incorrectly. I had just never seen you on these threads before. There is just so much arguing on these various threads lately. As a person told me, you did not fail Pablo, it failed you.
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Sue,
I am so very sorry to hear that Palbociclib has failed you. This drug has been held up with such acclaim that of course we are all full of hope. And on a more personal level, I send you my heartfelt condolences on the death of your niece. What pain she must have been in, and how much pain your whole family must be experiencing. I sincerely hope that your next treatment protocol is the "magic" bullet. We are here, though, whenever you need to connect with people who are facing similar challenges.
All the best,
*susan*
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Sue, my condolences, as well, what a terrible loss.
For what it's worth, I sometimes take breaks from these boards, too. I just get too focused on cancer and dwell too much on my fears than on the here and now--it's nobody's fault, but sometimes I just need to put my mind away from cancer for a while, at least to the extent that my cancer lets me!
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Sue2009 I am so sorry for the loss of your niece and I can totally understand how sometimes these boards can be overwhelming and depressing. I also step back periodically for the same reasons that you do.
I am also sorry that Ibrance failed you. As Susan said, we all started this drug with so much hope. I get my markers checked monthly and sometimes feel that I am living from one test to the next. But I guess that's life with Stage 1V. I had a similar experience to you when I failed on Kadcyla. The drug offered so much hope and promise and I only lasted 4 months and had to move on. But the good news is that was two years ago and things are still pretty good. Hoping that your next treatment is the one that puts you into NED.
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JFL -- I am now in "appeal hell", having been denied by my insurance upon my onc's first request, and denied upon an appeal that was made by my specialty pharmacy. The reason given by the doctor doing the review said that Ibrance is considered "investigational." After contacting the specialty pharmacy and getting them to share their appeal document, it looks like they only dealt with data from Paloma-1, not Paloma-3 which would better apply to my situation since I was diagnosed with mets out of the gate 5 years ago. My onc, not being that knowledgeable about Ibrance, prescribed it paired with femara (which is okay with me--I had a 2 year run on it when first diagnosed), and I think that may be why I was denied. The research & prescriptions presented didn't match my situation. Anyway, my next step according to my insurance is to appeal to my state's department of insurance. After talking to my specialty pharmacy about this, it's pretty clear they're lost; they all sound like college students and can't pronounce most words in the Ibrance reports I referred them to which they couldn't find on their own (Who are these people???)
After reading your earlier post, I feel I may have to do my own appeal. Could you please share with me how you went about this? Any help from anyone, in fact, would be very much appreciated! I'm 5 weeks into this already.
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sue2009, I am so very sorry about the death of your niece and the disappointment with Ibrance. I knew what you meant right away about staying away from the boards. It happens to me too and I disappear for awhile. Especially when members pass. Funny now that I mention it, I googled neupogen and up pops some bco posts by two of those we have lost in the past year- justjudie and anacortesgirl. Their positive impact is still felt.
I googled neupogen because I'm in my 2nd off week and my ANC dropped more- from 910 to 600. I'm on 75 mg and from what I know that's the lowest dose. The oncology pharmacist mentioned neupogen but I haven't heard from the onc yet.
Pharmacist says to stay away from "germy people" which is fine for the summer but I'm an elementary principal so come fall...
I don't usually get colds but...
I love my little "germy" ones and while on bad days (work wise) I threaten retirement I also feel like retiring now means cancer wins.
Yes to good blood work to Raine, Ellen and Monika and happy to hear Susan is feeling better.
I'll check out the supplement suggestions from pearlady and myra and hopefully will be able to ride this rollercoaster without too much upset.
Nope. Not for wimps
Lisa
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Lisa, we have a lot in common. I was DX in 2007 and my mets were found August 1st 2009. I am a retired Learning Disabilities and Speech and Language teacher so I know only too well the breeding ground of germs in schools! I retired 3 years ago, a bit early but I haven't regretted it. I travel when I can and help out in the school district with assessments so I still keep involved that way.
JFL I have been through a lengthy appeal as well. I did end up having to go through the state's department of insurance. Go to the website of your state and it will advise you how to start. Many states have health insurance advocates. I was able to get one in my state. It involved getting a letter from my doctor and going over all the codes for my treatment. Find out what the specific reason was they denied you, and address that directly. If you want to PM me I can give you more info. I did win the appeal but it took over 6 months.
Tried Xgeva yesterday since Zometa gave me so much hip pain..... and again the severe hip pain. Oxy isn't touching it.....anybody else get hip pain?
Thinking of all of you....even though I don't mention you specifically....I value all of your opinions. Thanks for letting me be here even though I still can't start Ibrance until my WBC is better. I've learned so much from all of you. I'm armed and ready to go when I get the green light.
Linda
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I just finished my first cycle of Ibrance and my white blood count is 200 to low. The onc is having me wait a week, check counts again and hopefully can start Ibrance with the 125mg. The first cycle was easy on my body. I am having issues with feet and ankles swelling so the onc prescribed compression stockings. That is helping.
I would like to thank all of you ladies for posting on this site. I also have to take breaks from the boards so I don't dwell on the cancer but just to continue to live my life as normal as possible. I also work at a school so the summer is giving me opportunity to make a few changes to help with the germs when the children come back in the fall.
Did any of your doctors tell you to get in 10,000 steps a day? I have been doing that and I thinks it helps. Just wondering if anyone was told that.
I hope everyone has a great day and free of side effects.
Charlotte
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My onc did not tell me to get in 10,000 steps, but my Integrative MD told me to exercise 30 minutes/day/5days/wk. Have not achieved that at all. Myra
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Not trying to be critical, but sometimes I feel like "healthy doctors" are on another planet. I understand that exercise is important, but I just don't always have the energy for it. Hang in there Myra
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We all know that exercise is beneficial and helps almost any situation. Although I don't always do the 30 minutes 5 times a week, I try to keep it in mind and do what I can. Even if it means walking from my office to the train which is about a mile. I find that if it do exercise and walk as much as I can it does give me more energy. But honestly, What does10,000 steps mean??? What does that equate to???
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Depends on the length of your stride of course, but on average, about 5 miles.
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I admit I don't always get in 10,000 steps but I try to walk when I can and park further away in a shopping center. I was just wondering if anyone else had been given that advice.
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My onc suggested the 10,000 steps a day in May 2014. I can see that it might feel like just one more darn thing on the pile, but I figure it's one thing I can actually control in this crazy random cancer life. I've missed some days but I've been averageing over 10,000 a day since she said that.
I have no idea if it helps or not, but it can't hurt, right
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lindalou, I'm happy to hear you are armed and ready to go and hope you can start soon.
I got a bit of a chuckle out of the 10,000 steps thing. Not chuckling because I don't think it's a good idea but because I tend to be the ready fire aim type and ordered a fit bit because I thought I could convert the steps into weight watchers points. You can't as far as I know. I wore the thing for a week and haven't picked it up since.
Speakng of ready fire aim, I ordered Astragalus supplement for immune support last night (thanks pearlady and myra) and then asked my onc about it. He better give it the thumbs up. Capinva, would you mind sharing what you are doing to get ready for the little ones. In addition to taking a probiotic and now adding astragalus, I want to figure out a way to continue with more walking once school starts in addition to a regular home yoga practice I do in the a.m. . I really do believe it helps with fatigue and probably our immune systems. I guess it's actually simple- just have to leave work at a decent time and force myself to walk the dog when I get home rather than immediately pour a glass of wine. Time is such as issue when working! Thanks for listening to me "think-type"
Lisa
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I've never been told 10,000 steps. But I have been told many times to do some sort of aerobic activity a minimum of three times a week for thirty minutes a day. I try to do five times a week but don't always succeed. I've also been advised that the thirty minutes of aerobic activity will help control blood sugar for up to 12 hours.
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Well, onc wants to stop the Ibrance and just continue with faslodex. Boy, my body seems to have temper tantrums over drug combinations. I didn't last long on afinitor either.
Happily though, he said he wants to stop since the last scan showed increase SUV, not "true progression" as he defines it: new mets or an increase of an existing met that is greater than 20%. This was the first time he defined "progression." The radiologist called it progression but I like my once read on it.
Tons and tons of good wishes to all of you in Ibrance-land
Lisa
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Thank u all for your responses. I especially appreciate those who admitted needing a break from site also.
Not good remembering names, but wanted to comment on couple of issues. # 1 -- Neupogen works great for helping bring up the all important ANC. I only needed with 1st cycle. It was explained to me that your body reacts better after 1st dose, but my doses were also dropped immediately. #2--who ever was complaining of hip pain, get it checked out to R/O mets to hip bones. That is where my bone mets started, & I learned that my MO did not understand the value of PET scans vs bone scans. I have had one hip radiated 2 years ago & have decided to get other hip radiated starting next Mon, 2 times a day for 4 weeks. My MO thinks this is crazy, but my RO who has over 30 yrs experiences assures me I am taking right path for now. Just trying to avoid a broken hip. #3-- getting insurance to pay for Palbociclib . My dr said she has had better luck getting it approved than she anticipated. Don't give up. Can some one tell me cost at this time? I have been in trial so haven't paid for drugs. Lastly, exercise, so important. I was told 30 min brisk walking 5 day/wk. I walk my dogs & swim laps. Exercise helps keep your lymphatic system moving, which helps keep immune system functioning better. You all are awesome, supportive & very much appreciated by me. Sue.
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Sue, you have provided great advice here. Thank you, and best wishes with the radiation. It must have been so concerning to learn that your mo was not up to speed. I say the P-I-A radiation is well worth avoiding a broken hip!
I haven't had any Ibrance for almost two weeks, but I've developed itchy rashy elbows and on one thigh. Has anyone had this or is it faslodex or unrelated to bc. What?!?!?!
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Sue hoping that your next treatment really kicks the cancer back. Do you know what it will be?
I hope you don't mind me probing a bit. You mentioned that you were in a trial for a year. Did you have good results for a year and then it stopped working?
Also you mention neupogen. Were you allowed to take while in the trial? My onc has prescribed it for me and I do use it on occasion. Most of the women here do not use it. However my onc has assured me that it is not contra indicated with Ibrance. I've even checked with Pfizer and they have confirmed that it is not on the list of drugs that interact with Ibrance.
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Sue, thanks for your advice on Ibrance! Good luck with your treatment after Ibrance. The cost of Ibrance is just under $10K a month. Ouch.
I start my second cycle today, at a lowered dose of 100mg. My MO told me that he has been checking around with some experts and nearly everyone is being lowered, which is why he was so quick to take me off the 125mg dose. He said that the few who are staying at 125 have to take so many breaks to get their counts back up that it is better to be on a lower dose consistently. I know some people here are still on 125. Is anyone able to take that dose without extra recovery time? He said he doesn't know how the PALOMA study did it with 125.
If anyone needs help with their insurance appeal for Ibrance with Faslodex, PM me. I can send you a sanitized version of the letter I wrote which was successful. Don't make the mistake I did of assuming the doctor's office will have an expert writing your letter. The doctors don't write them and the staff who do may not really understand what the letter needs to say, who should be taking the drug and which facts about your cancer and your profile are necessary or helpful to include. I was truly disturbed when I read the second appeal letter the social worker wrote. It was terrible and understandable why I was initially denied twice.
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Lisa, to prepare for school starting in the fall I have moved my desk further away from the students coming in to get items they have forgotten and I won't be helping in the school clinic this year. Keeping hand sanitizer close by at all times.
I have been pretty good getting close to or at least 10,000 steps a day. Certainly can't hurt and it is something I can do without taking more meds.
For those who have been stage iv for several years, do you ever get off treatments or just go from one treatment to another?
Hope everyone has a good weekend and feeling good.
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Oh JFL.
I have spent much of the day on the phone. Long Story short, I have been on Ibrance 125 but need to go to 100 mg. Baling insurance...Need interim amount until TriCare for Life will pick it up 9may be 60 days)....Need someone to help me get it at discounted rate for 60 days..Cannot afford of course $20,000 for that amount of time but do not wish to give up something so successful. Carolyn from Music City
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Carolyn, what a nightmare. Good luck. I know doctors usually have extra reserves of 125 from people like you that need to lower their dosage and turn over their unused pills. Is it possible they may have some 100s you could swap with (turn in your 125s in exchange for 100s)? Before my insurance was approved, the psychologist at my cancer center mentioned that she could connect me to someone who could get me a month or two of interim supply until my insurance went through. She told me one of the other doctors had extra 125s (before I was lowered to 100s). She also mentioned that she had connections to a Pfizer rep who could get some. My own MO didn't mention these options but she did. Have you asked around at your cancer center/MOs office for any informal routes like this?
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what are the cycles regarding ibrance? My doctor has ordered 21 pills at 125 mg. Waiting for insurance approval.
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Aaoaao, you take Ibrance for 21 days, then have 7 days off. Blood work done to check levels, some oncs do it weekly, some at the middle of the cycle and some at the end. Many of us here have started at 125mg and had the dose lowered to 100 mg due to low counts. Getting ready to start my 4th cycle on Monday. My tumor markers have dropped just shy of 100 points since starting Ibrance. Good luck
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I think my hair and nails have stopped growing!!!! I went to shave my legs and there was hardly any hair there. Then I realised that I haven't had to trim my nails in a couple of weeks. Does that mean my hair is going to come out? I hope this doesn't sound insensitive. I don't want to hurt anybody
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JFL
I've been on 125 mg Ibrance since March-no lowering of the dosage and only the 1 week off in-between I think I'm one of the few who's stayed on this dosage without a change of the cycle. My biggest complaint is being tired but now that I don't have to commute 1 1/2 hrs each way to work I'm hoping for more stamina.
And one of the side effects is hair loss/thinning- mine is a a bit thinner on top but nothing noticeable to anyone but me
Have a great weekend all!
Babs
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Thanks for the info Lynnwood. I was confused why it was 21 pills instead of 30. I've coped well with chemo so I hope I handle this well too.
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I am on my second cycle and still on the 125mg. You might well find that the 7 off days are a good thing. I certainly felt stronger when I started the second cycle. Best of luck!
*susan*
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Babs, you are a trooper! Wonderful you can handle 125 so well.
I too have noticed my leg hair barely grows on Ibrance. It is great but I hope the same thing isn't going on with my head!
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Hi all: This is my 8th day of my 1st cycle . I'm on 125 mg and Femara I'm pretty tired and looking forward to the 2nd cycle if it's going to help me feel less tired. I'm also anxious to see my counts. I don't see my Onc. until the 30th unless something goes wrong before then .
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Hi All, Just an update on the clinical trial of Ibrance/palbociclib and 5FU/ 5-fluorouracil at Georgetown. I have been on this trial for about 5 months. As far as I know, they have only had 3 other women with breast cancer on the trial.
At start, I had terrible BC lumps and bumps under arms, in breast, and bones and abdomen. The palpable lumps are almost totally gone except for a spot under arm, and PET/CT shows that cancer is shrinking or stable in the different parts of my body. We do not know if the good results are from the chemo or the Ibrance or both.
Side effects have been tolerable: tiredness (treat with low dose ritalin, 2.5 mg twice a day), sore throat/mouth (magic mouthwash), thumb peeling.
Recently terrible ear pain with noise hyperacusis/ probably related to the chemo. I will post about that in another forum as it is probably not ibrance related, but welcome thoughts from anyone who has had hyperacusis.
Overall, very happy with this trial. The doctor and nurses at Georgetown are great, and it is wonderful to have had two good scans since I have been on the trial.
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I was joking with my husband today that it would be just my luck. All my hair will stop growing Except for the hairs on my chinny chin chin! Babs, it's good to know that you were able to stay on the 125. I was just surprised about the hair. I have never been on chemo, was stage IV from the start. I thought I might lose some hair but it isn't high on the se list and it never occurred to me that ALL my hair and my nails would stop growing. CancerThriver, I am so glad to hear that you are seeing good results
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I received my Ibrance in the mail Thursday. I had to work all weekend, so I was thinking I should start tomorrow night when I get off of work. How long will it be before the side effects hit? Just curious, because I am a nurse and I have Monday off, but then I work 20 hours between Tuesday and Wednesday. Thanks.
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Hopeful/Allison, in my own experience, Ibrance side effects are gradual, not dramatic like chemo side effects. Fatigue seems to be the common side effect for many of us. I had some minor tummy troubles with my first dose and at the beginning of another cycle, but I think my body has now adjusted. Starting after you get off work seems like a good plan, just in case. Take it with a meal and just avoid things that might be challenging to your tum, like high-fat.
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Raine-Wells and JFL--About the hair. I am puzzled about it, and I don't know what is at work here--taxol (finished a few months ago), chemo-induced menopause, Ibrance, and/or letrozole. The hair on my head looks thick and needs normal trimming, but everywhere else the hair seems to be less than before, especially underarms, which hardly need shaving at all! I'm just finishing my fourth Ibrance cycle.
JFL, I see from your stats that like me you are recently menopausal. How about you, Raine? Maybe we are all just experiencing typical menopause hair changes. And menopause doesn't make most women lose the hair on their head, though I guess eventually it can get thinner. Let's hope we can keep it where we want it and lose it where we don't want it!
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thanks Shetland. I will take it tonight as planned then.
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Jopeful,
As you can tell from all the posts on this thread, the range of experience is wide. For me, day 5 has been the hardest one during both cycles. I can't be too far away from a bathroom on this day. Week 3 I had some soft skin [strange places like nose, mouth, vagina] discomfort but nothing that stopped by regularly scheduled life. I like tracking these things so I can plan my activities to not happen on a regularly "sucky" day. And I am a numbers kind of person. I like to see patterns. Perhaps this gives me the illusion of having some control?
*susan*
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i have been on Ibrance/Femara since the end of February. Like Babs I have remained on the 125 without any real issues. A little bit of tiredness towards the end of the cycle. But nothing that has kept me from my normal life of work and travel from work.
When I started I was just coming off a year of Halaven and had hair but very thin and slow growing. Very happy to say that my hair has grown back. A little thinner and a bit slower but very acceptable. I take Biotin three times a day which is supposed to help.
CancerThriver so glad you have gotten such good results. Great news that there are additional options with the Ibrance.
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I had my ovaries out in '03. They were cystic but no cancer. So the only thing for me is the Ibrance. I am not really concerned about the hair. I was just surprised. Today was my last pill. The last 3 days I didn't work. Too tired. I work at JCPenney and it is physically draining. Just rested. Walked around South Carolina Aquarium to stay out of the heat. Hope everybody has a nice day
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Hi,
New to this forum (not to MBC)... JFL, I think I sent you a PM about your offer to share info on how to appeal insurance co's denial of Ibrance, but I'm not sure if you got it. I am dealing with Blue Cross Blue Shield. Just got denied due to "not being medically necessary without Letrazole I have already take Femara and progressed. Falsolex has been working well upto a week ago, when a scan picked up a tiny bit of progression in my liver.. My onc was willing to give Ibrance a try but her request was denied. According to my insurance co. the appeal needs to come from me not my doctor. I can use all the help I can get on how to approach this. .... Thanks ladies for all the positive energy on this site!
Sonya
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Sonya, I just sent you a PM with some info. I can also send you a copy of my letter by email
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SonyaS, I have Blue Cross Blue Shield and I also had taken Femara previously. They approved it for me. Having said that, I have been through a lengthy appeal with them about some radiation. Good luck with your appeal and PM me if you need any more info. Glad JFL can send you a letter.....wording is very important.
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To all, as of 5:00 p.m. yesterday GEHA was denying my coverage of Ibrance. My physician had a peer to peer review last week. My son called an acquaintance that is head of Southeastern Pfizer Oncological drugs yesterday. He said late yesterday that he was puzzled that I was unable to get approved if I had insurance. He said he had offered to follow my "case" with the specialty pharmacy. I was in the oncologist office this morning at 10 trying to decide on the next course of treatment when a nurse came in and said it had just been approved. So sad that this is our reality: when you have people investigating and calling and looking into your case it expedites things. Anyway, I have been approved for 100 mg as soon as my neutropenia releases its grip. I am thrilled. On the other hand, I have to have a plain x-ray of my right femur tomorrow to make sure that the bone marrow is not involve. If it is, then I need the rod inserted into the femur surgery... It is hard to believe because for the most part I feel great all the time. Nevertheless it is what it is and I do have a wonderful lady oncologist. Carolyn from Music City
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Bad news for me.My scan showed my liver tumors grew while on Ibrance. The largest grew a whole centimeter during the three cycles of the drug. I have an appointment tomorrow morning with my onc, and I expect he will put me on something else. I've never had chemo. It probably will be the beginning of that. I'm worried, of course,
I expected at least stability because my markers didn't go up much. He may even suggest a biopsy. Whole new territory
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Sandilee so sorry to hear that. Hoping that you get some answers when you have your appointment tomorrow and get on a drug that works for you. Since you've never had chemo you have lots of options. Maybe an oral chemo like Xeloda or Afinitor. Praying for you. Please keep us posted.
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Sandilee,
Oh shoot! I am disheartened that this drug wasn't the perfect one for you. Please let us know what your oncologist thoughts are.
*susan*
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sandilee, so very, very sorry!! I hope your next tx works beautifully and controls those lesions. Myra
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I'm sorry sandilee that it failed you. I hope your doctor finds something else that works. There are lots of options for you.
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Sandilee, I'm so sorry to hear that! Sending prayers and hugs, hoping the next one treats you better
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oh that sucks, Sandilee! Chemo is s drag, but it has a really good chance of knocking all of that shit out, and fast. Whatever treatment you decide upon, fingerscrossed for you.
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I am starting this drug regime on Saturday. I want it to work. My last 3 scans have bit been positive. Sending a prayer for yours and looking forward to the tips and tricks.
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car2tenn....what did the x-ray show? Hope you had good results.
Sandilee...whole new territory is right. So sorry you have to go through this. Sending a hug....
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Round 2-halfway and blood levels are still good. In fact, all of the important ones are within [barely] the normal range. Feeling lucky that I can tolerate this protocol. Now, I want to know if it is working.
*susan*
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Congratulations susan! I also have good counts and I'm feeling pretty good this round. Tired but it's manageable, sore feet but I'm getting used to it and some annoying skin issues in unmentionable places. Went to onc office today for lupron shot and a port flush, enjoyed chatting with the nurses and I was able to encourage another MBC patient. Had a good day. Tomorrow is my last day at my current job and I start a new one on Monday. Hoping things continue to go well. A little scary making a job change right now but the new job looks to be less stressful. Wishing everyone a restful night's sleep.
Celeste
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Sandilee,
So very sorry to hear of your progression, it is hard to move on from this drug since it was very tolerable, and it is always stressful to have to make a change, but I am praying that you find a treatment that you tolerate well and that will stop the progression.
I am still wondering if my progression occurred during the month I was on nothing (prior to going on Ibrance, while waiting to get approved) since my tumor markers actually improved while on the Ibrance (but scans after 4 cycles showed progression). I am meeting with another oncologist tomorrow to see what my options are at this point, will let you know if I learn anything helpful. I did chemo back in 2008 at Dana Farber, tolerated it pretty well back then, and the doctors continually monitored and adjusted it to lessen the side effects. Not sure if I want to do it again - just looking for some more quality time and need to find out what my best option is for that.
Prayed for everyone at mass today, you are all in my thoughts and prayers.
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Celeste,
Yes.... that skin stuff. It is happening.... the feet, the hands, the mouth, the nose, the personal areas, I am just learning how to deal. This is all such a moving target, isn't it? What a huge thing to change jobs at this point. I really hope that this new job is perfect for you. It is exciting!
*susan*
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So sorry Sandilee! Hope you find something you can get excited about.
Good to hear everyone else is still doing well. I wanted to pass along that moving to Faslodex and Ibrance is an option and shouldn't have a big issue with insurance approval. That said, I failed Faslodex a couple of years ago. I'm being told my best option is chemo because of the bulk of disease and how fast it is progressing right now. It's not what I wanted to hear, but it is what it is. I'm still waiting for a 2nd opinion, but it's looking like weekly Gemzar.
Good night Ibranceland
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Hope, I'm new to the message boards and I know you started this thread. Thank you. I'm sorry Ibrance didn't work for you, and that you'll be starting chemo again. Hormone therapy and Ibrance can make life almost feel normal but chemo is another story. You certainly know what to expect and I'm sure that feels discouraging to you. Please remember that you've conquered the chemo monster before and you will again. Don't give up hope, Hope. You're obviously a strong and loving woman and I'm sure you have family and friends to support you. Draw on that support and let them be strong for you. This is a horrible disease we have, there is no relief from it and that fact can be a heavy burden. Let others help you carry it right now. I hate what this disease has done and will do to our bodies but what it can do to our mental/emotional wellbeing is even worse. Guard against that by surrounding yourself with those who love you. That includes a bunch of strangers on these message boards.. I'm crying for you and me and all of us with MBC right now because we are so full of hurt but my tears are full of hope for a better tomorrow too. I wish you a good day today. I hope you get moments to smile and even laugh, forgetting about BC for a while.
Celeste
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Hey ladies,
Start cycle 2 today. Bloodwork results were shared with me and my WBC and platelets were low but not low enough to change dosage or put me on hold till they rebounded. Felt pretty good on my 7 day break until the last 2 days. I am a little perturbed with the facility I am going to because it is always something when I go. I never get to see my onc because she is in such high demandand you have to book with her 2 months in advance... That is absolutely absurd to me... I always see a CRNP... Oh and you ladies always talk about tumor markers... Which has never been discussed or ordered. Found out yesterday that a baseline work up was never done..then I was left waiting 45 minutes past my appt time. As far as side effects, fatigue from the Ibrance.. Joint pain in my right hand and knee from the Letrozole, and all the menopausal fun from the Zoladex shot...those symptoms are the worse for me... Night sweats, hot flashes and headaches that never go away! I know this could be a thousand times worse and I try not to complain but this has been a hard adjustment for me... Living life as a what I thought was very healthy 36 year old and loving life to now trying to find the mental strength to do those things. I try to leave the house looking like I have it together, but mentally it is a struggle. Doing my best to stay positive. My support team is soo positive and so convinced that I will "beat" this...and who knows maybe I will, but I don't think they fully understand even when I explain it to them what this diagnosis means. Either that or they are in denial. Praying for peace with all of this. Almost 2 months since my diagnosis and I still struggle daily.
Monika
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Hope, I can't express my sadness and want to give you the tightest hugs I can send! We all know this disease is awful, no matter what the idiotic media says or the glimmers of hope these new drugs give us for just a few additional months of QOL. I wish you all the best with your next tx and please G-d let it kick cancers butt.
Monika, you must insist on seeing a doc and make sure all the correct tests are being completed. We are our only advocates. No one else can demand what you can. No one else but you can demand these things be done. It is wonderful you have a loving support group. Count that as one of your biggest blessings. Two months into dx is nothing. I am just one year in, and I am finding it harder to accept. MO wants me to start anti-depressants. Starting to think it is a good idea, I can't live crying all the time. Tried really hard putting on a happy face, not working anymore.
Hugs to all. Myra
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Hope I know that this isn't what you wanted to hear. Just want to give you a big cyber hug and let you know that we are all thinking of you and hope that Gemzar kicks cancer's butt. In the scheme of chemo drugs, Gemzar is probably one of the easier ones to tolerate. I did not have success on Gemzar but another patient of my onc's had regression and was stable for over a year with minimal side effects. And the good news with Gemzar is that you don't lose your hair and no neuropathy as with many other drugs. Constipation was the main side effect that I had and you can deal with that easier than other side effects.
What is happening with the Androgen receptor testing? Is that an option at this point or something for later? Did you get the results of all of your testing? Also do you have the second opinion scheduled?
Praying for all of us. Yes, I agree with Myra. The anxiety of this disease is awful. I feel like I live from test to test.
Have a peaceful and pain free day everyone?
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Thanks for the well wishes, it does mean a lot to me. I'm still pursuing AR testing, but being told going that avenue right now is not advised because I need something faster acting. I will probably need a new biopsy for the AR testing. I want that anyway because I'd also like to have chemo sensitivity and gene testing done. hoping to know more on that soon. Soon, hopefully
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Mdilllard04 - Monika, I feel for you with your issues with your medical team and care - I won't share my long sad story in that regard, but want to say that it took me 3 changes of oncologists to find not only excellent care but oncologists that care about me, spend time with me, answer my questions, laugh and cry with me. And it makes all the difference to maintaining hope and keeping cancer life in perspective. For many reasons you may want to try to resolve your issues with your present team, but if not possible, hopefully you will get 2nd, 3rd or more opinions until you find providers who will treat you well. You are in an area of the country where I assume you have many choices, at least I hope so. So good that you have strong family support - I think it is hard for anyone not going through this to fully understand the impact it has on us - I don't think I did - sometimes I wish I knew what I know now when my father was going through this - I could have been so much more support for him.
I have found the "struggle" waxes and wanes, but medical care you trust is an important part of the journey, Blessings and hugs to you. Susie
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Hope: I'm so sorry that Ibrance have failed you. I'm hoping that the next treatment will give you many years.I've had cancer since 2001 and stage 4 since 2013. There's hope for us with all the drugs that's constantly coming down the pipeline. We just have to keep trying them until we find the ones that gives us more time . Just hang in there and stand on your name (Hope)
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Thank you Macal! I'm trying to remember how excited I got when I heard Ibrance had just been approved by the FDA. I remember all the promise it held for me and all that bundled up hope propelled me through the spring and allowed me to live life to the fullest. I'm looking for that again!
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Hope...I pray that you find something that works!! I am very thankful you started this thread because I one have learned so much and two have no one walking around in my present life who is fighting the fight that we are battling. You ladies are truly the only people I have that really "get it." Be strong Hope!!! Praying for and with you!!!
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So my onc is starting me on Xeloda next week. He gave me a choice between this oral or an IV chemo, so I hope I made the right decision. The side effects sound pretty yucky.
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Sandilee good luck with Xeloda. I was on Xeloda for almost a year. I did not find the side effects terrible at all. I had some GI issues in the beginning but they got better after the first month or so. Also no hair loss and no neuropathy. You have to watch for the hand/food syndrome, but I didn't find it too terrible. Just remember to use cream all the time on your hands and feet. My oncs office had given me the cream. I can't recall that name of it, but I'm sure they would know.
Sending you positive energy for a long run with Xeloda. Please let us know how you are doing. -
Sending everyone {{{{hugs}}}} today.
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Hope and Sandilee, wishing you great results with the chemos and better than expected with the side effects, too (and Sandilee, I would have picked the oral, too, if for no other reason than to avoid precious hours with infusions).
Monika, I agree with the others above, your care sounds a little haphazard, do the nurses and onc communicate well? I understand (I think we all do) how hard it is to get used to news like this. I know I was so afraid and practically dazed. There are still ups and downs, but it does get a lot easier in time. Be genlte with yourself.
I have a little good news for the evening--after just over 2 weeks off, my neutrophils are back over 1000 (just barely, but it counts) so I cracked open the bottle of 75mgs and I'm back on Ibrane (woot!).
Have a great evening, everyone, and here's to all of us having great weekends!
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The vivid dreams are real ! Mine had celebrities in it and became incorporated with my real life , real time !
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Prayers for you Hope.
Monika - I was just diagnosed a month ago and I am 39, so I get how hard it is for you. My family has the same reaction about "beating" this. I try to explain, but I think they take it as me being pessimistic. This is definitely pretty stressful and hard to get used to.
Roses- Great news!
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Myra, there is nothing wrong with antidepressants. This is a lot to deal with and its so hard on our psyches. It just takes the edge off. I don't even notice I'm on it, except that I am able to keep myself from sinking into the darkness.
Monika. You need an accessible Onc. Mine I can email anytime and he actually gets back to me same day. Also, I have his cell phone number. His PA gives me copies of my blood work results everytime I go, including tumor markers. This kind of thing you need info, info, info. And you need to know that your doc knows you and your case intimately. This is your life. Dont accept anything less.
Allison, I'm sorry about your new DX. I was diagnosed stage four 4 years ago (next week). Was NED for 3, until a few months ago when he skipped out on me. It's not too bad though. I am raising two kids, great hubby, great friends, pretty active life otherwise. Just had to readjust a bit to the new normal. Hang in there.
Stefanie
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Thanks for your well wishes, pearl lady and roses toeses, and everyone. Xeloda is my first chemo, but I'm grateful I have at least this one more option before infusions begin. If I could get a year on it, that would help a lot.
Good luck to everyone new and currently on Ibrance. I want to hear some success stories!
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Hmmm.... I wrote a long post to Monika last night, but it doesn't seem to have posted. Can't reproduce right now, but this is hard Monika and you are very early into this game. It took me at least 6 months to get past the "deer in headlights" phase, and I had five years post initial treatment to consider this an option. Be patient with yourself. This is hard stuff.
*susan*
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Thanks Stefanie and Susan...I am going to check out an onc at Johns Hopkins next Thursday. While mine is very nice, she isn't accessible like I need her to be and I am tired of seeing nurses and no one is ever prompt in the office.
Susan...I know... Almost two months is not a long time to process all of this. I have my days and moments. I am surprised my tear ducts can still produce tears as I have cried and continue to cry at some point in the day.
Monika
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I know, Monika. I would cry and say, "This is just so wrong." Somehow, you gradually get used to the idea or something. You start having more days when you don't cry. Hug.
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Okay all, I love reading how each of us is addressing the huge mountain to climb of breast cancer. My insurance finally delivered my Ibrance 100 mg but I am not to take it until I am approved after taking my blood again in 10 days. Of course I did not help myself with my experiments of poking holes in the end of the 125 mg tabs and trying to sprinkle out enough powder to make it a guesstimate of 100 mg Ibrance. Well I did not do a good job and almost wiped out my neutrophils which went down to 400 ...I do not recommend anyone else trying to do this. I continue to learn from each of you. At least I have the approval of the insurance company for a little while to continue the Ibrance. My Guardant tests show that I have a component of ER positive and so when the Ibrance stops working I will have a whole new protocol. Hope it is a long time coming because Ibrance suits me fine with minimal side effects. blessings to all. Carolyn from Music City P.S. For those who follow, my femur X-Ray did not indicate need for a rod to be inserted into my femur. (Whew I feel as if I have dodged a bullet. )
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You guys! It looks like my eyebrows and eyelashes are thinning! Nooooooooo! They came back fine after taxol. I had three months of just an AI before adding Ibrance. What if my hair starts to go too? It's a really cute pixie right now. Waaaah!
I know this is not a big deal in the scheme of things, but I really like having hair again.
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Shetland, I have had hair thinning on my legs and "other" parts, but so far my hair is good. At least I am saving money on leg and bikini waxing....LOL.
Hugs to all....Myra
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i'm on my second cycle of ibrance and femara and I have sore throat and blisters in my nose as well.
Let's all hang in there.
Cheers
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Shetland, my eyebrows and lashes thinned on Ibrance too. It happened so slowly, that I didn't notice at first. I've been using makeup to fill in the holes. My hair seemed fine, but I have so much that I may not have noticed thinning.
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Carolyn: I'm glad you didn't have to get the rod .
Monika : I'm glad that you're getting another Oncologist : This is too serious not to have access to your doctor !
theziz :This is my first cycle and I have a sore throat at night, but daytime is fine .
Shetland: I think my brows are thinning too. They were already thin.
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Oh wow. Ok. I got out the eyeliner and eyebrow makeup today. Sigh. Maybe my head will be ok.
Theziz, what does your onc say about the nose sores? I haven't heard of this one yet.
Glad to hear no rod, Carolyn.
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I have had the nose sores and bloody mucus from the beginning. It is one of the SEs. Myra
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Good morning and Happy Sunday ladies,
So I have been having sore hands, knees, and ankles from what I think is from the Femara. My hands have begun to swell and look jaundice. I do have liver mets, should I be seriously concerned??
Monika
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Monika, I would definetly check it out. Myra.
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Hello Ibranceland.. Just checking in. Theziz .. I had very bad nose sores early on but by cycle 5 or so they were gone and I have had no problems since. I lost major hair during cycle 8 and the trial nurse said they are seeing hair loss more as a cumulative side effect, when you have been on the drug awhile. I had no problems with hair thinning in the beginning. It is not enough to make me change anything about the dosage. It is just annoying. Just starting cycle 9 this week. Blood counts have really evened out.. Just a little low and not much change cycle to cycle now.
Rooting for all of you.
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ps Trial Doctor said to use AD ointment on the nose sores. It worked good.
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I would like to join in your conversation regarding Ibrance, which I will be starting after I have my hysterectomy in August 6, 2015. Would like to know if anyone has had hair loss with this? I just completed 18 treatments of abraxane so my hair is finally growing back. Would hate to loss it again. Are you able to work whe taking Ibrance? Thank yo
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With your hair loss is it where you need a wig or not that severe? I am starting Ibrance in August and am worried about side effects since I'll be returning to work
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I looked at the "Adverse Reactions...in Study 1" table. It said alopecia 22% for Ibrance + letrozole, but that was 21% grade 1 and 1% grade 2. I could not find definitions for those CTCAE grades, but I'm guessing grade 1 just means thinning and not actual bald spots?
Lenn13k, wow, nine cycles! I have completed four. That is interesting what your trial nurse said about the hair effects being cumulative. It sounds like the hair effects come on slowly. Do you think the loss continues, or does it level out? Is it enough to make you use a wig or cap?
One more mental adjustment to make. I need to take these drugs.
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Shetland - Hair loss is not enough to wear a wig. I am hoping it levels off like all the other side effects have. They are tracking it and we will discuss it again next month. I see the trial Doctor in August.
For all you newcomers to Ibranceland. If you haven't read through the old posts... Make sure you stay hydrated. I work outside and find I have to be really careful about that or I go down fast.
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MJ, Three cycles of Ibrance and no hair thinning so far. Yes, you can totally work, but the first cycle or two you may have some fatigue... Probably not as bad as chemo fatigue, but we are all different. You will also be recovering from a surgery, which realty takes a month or two for your body to fully bounce back from. Coupled with Ibrance it might be a bit of a wallop. Most of my fatigue has just settled into a steady " I just get tired a little earlier in the evening" kind of thing. Don't confuse that with sleep, though. No matter how tired I get, can't seem to sleep a lot.
Also, I dropped from 125 to 100 mgs. SEs were much better after that. Feel "relatively" "normal".
Stefanie
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has anyone experienced swollen eyelids? I can't figure out why my lower kids are swollen. They don't hurt or itch. Just curious if it might be an SE.
Stefanie
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I am coming to the end of cycle 2 and am bone-tired. I am trying to do too much since I don't really have a choice. On the hair front.... my eyebrows, always minimal at best, have thinned to almost nothing. Nose hair is MIA as noted by the sores etc since the area is no longer protected. This weekend I was on the subway, and the screeches were really loud so I am assuming that the tiny hairs protecting the ear are also gone. Head hair seems in tact. After chemo 10 yrs ago, I never go armpit hair or leg hair back, but again, I didn't have that much to start with. For me, the skin irritations are the most annoying [and slightly painful] side effects of this drug. Soft tissue in many places are getting sores and blisters which are quite uncomfortable. And that ever-present fatigue.
Can't comment on the eyelids. One of my side effects from chemo/treatment was the presentation of Graves Disease, so my eyes have looked and felt like crap for several years now. I am one of the lucky ones who got thyroid eye disease in addition to the Graves. Lucky me!
*susan*
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I haven't been on these boards for almost 6 months. There were very unconstructive people on the one I followed the most and I lost patience. I'm hoping this thread will be different
My initial diagnosis was stage IV ILC, grade 3. Anastrozole served me well for 1-1/2 years. I started to have progression in bones in June. At my 3 month checkup my oncologist changed me to letrozole (femura) with Ibrance. I am 3 days into my second cycle. With Anastrozole, I had some bone and joint pain (though that might have been the mets, don't know how to differentiate. I also had awful hot flashes which were more like night sweats during the day. On letrozole/Ibrance, my hot flashes have decreased, my bone/joint pain has increased. I get labs every other week to check CBC and CCHEM. My CCHEM has remained normal, no damage to liver or kidneys. My CBC shows lowered white, red and absolute neutrophil counts, but not low enough to discontinue this course of treatment. Just before I started the 2nd cycle, I broke out in bruises all over. Most were 1/8" in circumference, some were about 1/4" high, up to 2" long. I had one round bruise the size of a half dollar on my left breast. They thought my platelets were low and that was what was causing the bruising, but they're fine. I see my oncologist next Monday, question one is if the bruises signify a blood cancer (I am a lymphoma survivor). We'll see what happens, you do what you have to until you can't anymore. The story of our lives. 
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Hi Sharon: This is my 1st cycle of Ibrance and Femara. Friday will be the last day and then my 7 day break. I see my oncologist on Thursday to have everything checked. I'm on 125 mg.
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Good luck, Sharon, with your appointment next Monday. That is so scary.
I also would like to join all you ladies on this Ibrance thread. You have been so helpful to me with the information I found here. After a few different treatments - including two clinical trials, I continue to have progression (bones, abdominal wall, diaphragm) and I am now on to Ibrance + letrozole. I'm on my second week, with a blood check coming on Friday. Hoping it looks good, because so far I am doing well on this. I know it's very early though!
As far as hair - I'm disappointed to hear that hair loss is an issue with Ibrance. I lost so much hair after my last drugs, and I had a lot of very thick hair, that I have to either wear a wig or hat. I was so hoping that I would be seeing hair beginning to grow back. Oh well - as long as it's working!!
Diane
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Hope and Sandilee
So sorry to hear about your latest issues. Sending hugs that your next treatments kicks BC's ass!!!!
I moved about 2 weeks ago and immediately left for our first vacation in sooooo many years. It's a lot of sightseeing walking etc in the heat. I'm pleased that I'm doing as well as I am. Good thing it's during my 7 days off !!! Tomorrow we head home. Miss all of you. Today was the first time I had internet access!!!!!
Hugs to all
Babs
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Babs,
So great to hear about your vacation! Can't wait to hear more about it when you are safely home with internet. I have decided that there are very good reasons to get our 7-days of reprieve from this drug.
Enjoy!
*susan*
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Hummingbird welcome to Ibranceland. I hope the combo stops your progression and works for a very long time.
I haven't been posting much lately, but do follow the thread. I have have been on Ibrance since the end of February, so have lost track how many cycles I have completed. Maybe six or seven??? For me first and foremost is the fact that I am stable with very little side effects. But on the hair front I am pleased that my hair is growing. I had very short and thin hair when I started on the combo from my previous treatments. My hair has grown substantially since I started and is getting somewhat thicker. Along with the many supplements that I take, I take Biotin three times a day, as recommended by my holistic pharmacist. Biotin is suppossed to help with hair growth.
Babs glad you had a great vacation and are now getting settled in NYC.
Sharon best of luck with your appointment. I hope you get some positive news.
Have a great day everyone. Its steamy here in NYC.
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I have been on Ibrance 100mg with Femara for 2 weeks. Really no side effects up until today. I woke up feeling very fatigue and heavy. Still have one more week for going off for 7 days. What other side effects have you ladies experienced. I am praying this works because my ONC says this is the last chemo pill for me before IV chemo.
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Sunshine, I have been on this combo for 4 cycles. So far, fatigue is my main side effect. I have some stiffness and aches from the Femara but I have been on it before so I am used to it. I have found my fatigue improving as time goes on, but I am out of work on medical leave, so I'll have to see how the fatigue is when I return to work. I have found that I feel really good on my 7 days off. I am also on 100mg. Good luck, hope this combo is the answer for all of us! As a side note, my tumor markers have gone down close to 100 points since I started treatment and the scan I had last week shows no organ involvement, bone only
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The third week is my fatigue and "heavy" week, and then I hope to recover during the 7 day respite. Small detail... Ibrance is not chemo. I think we all hope to have good luck on this drug to avoid IV chemo.
Good luck this week!
*susan*
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Susan, my onc calls Ibrance chemo. She calls this treatment hormonals combined with chemo. I have not had any IV chemo as of yet, hoping to avoid
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Pearlady, Thank you. I am happy to hear that it is possible that my hair will grow back while on this treatment. I check it a few times daily in a lighted, magnifying mirror looking for some peach fuzz! Nothing yet, but hopefully soon.
Good Luck to everyone! I am so hoping we all have a good run on Ibrance.
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I just started my second cycle of Ibrance on Tuesday. My white count didn't come up at all on my week off. My onc was on the fence and decided to drop to 100. So, I didn't ask him because I was so happy about my scans showing response. He gave 2 numbers 1100 and 1.1. Is this really low, and what does that mean to me?My red count stayed at the low side of normal.
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Looking over the side effect profile of Ibrance, I said to my onc, "So how is this not chemo?" She replied, "Yeah, I think of it as chemo," I know it's a targeted therapy, but the label on the bottle says "Chemotherapy drug toxic dispose of as biohazard". I find this validating.
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Don't know how you would definite what is chemo and what is not. Why is Afinitor considered an oral chemo and not Ibrance? I do know, however, that from personal experience, that although there are side effects, this has been much easier than IV chemos and other oral chemos such as Afinitor and Xeloda. But we are all different.
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why has this developed into whether Ibrance is a chemo drug or not? I don't like this. We should be helping each other, not arguing
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Yes, I am sorry that I mentioned this. I like precision in language, so I call Ibrance a targeted therapy when I discuss this drug. This is a different world to me than the A/C cocktail I experienced back in 2005 or the FEC and other combinations that my poor sister has taken, so it helps my family to think of this drug as something else.
*susan*
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Sorry I wasn't bringing it up to argue. Just find it interesting why one drug is chemo and why one is not. Even Drs. don't agree. It's like my onc said years ago, "in many ways treatment of breast cancer is an art as much as it is a science". I found this an interesting perspective.
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Carolyn, I am so glad I read your post. I have a brand new bottle of Ibrance 125 and seriously thought about trying to guesstimate how much to remove to make it a 100. I won't do that now. So I am thinking 1100 isn't terrible bad for my wbc
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Hi Sunshine, I am in the middle of my second cycle of Ibrance/Femara. I have mild se I think. Some fatigue, stiffness, especially in my lower back in the morning. Is it Ibrance or Femara causing that? I don't know. This is all new territory for me. I have some mets in my spine-lower back but the MRI also showed degenerative stuff too--so what;s the pain from? I just try to ignore it and do my usual activities.
My wbc started at 11.9 and dropped to 4.3, the Absolute Neut. went from 7.2 to 2.0 after the first cycle. So I started the second cycle and my ON didn't ask for another blood test until a couple of days before I see him again on Aug 25. I guess I seem to handle the drugs well? Good luck to us.
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Good Morning Ladies,
I thought I would post on my SE's of Palbociclib and Femara, I've had no hair loss and minimal side effects. I feel quite well and am fully active, there are days when my energy has dropped but not often enough to be a issue. Also, on my last tumor markers, one fell into normal range, and the other two had decreased values. In a few weeks I will have my first scans and will know more about the effectiveness of this protocol. That is why I follow this thread, hopeful that others will post positive results from this combo and it is working.
I treasure every day, knowing that one day things may change but not today.
Kathy -
I also did not mean to be disagreeable when I mentioned that my onc calls this chemo. I just found it interesting that different oncs call it different things. Perhaps this drug is so new that the oncs don't know what to call it. Sorry if anyone was offended. No argument intended! Peace
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Kathy so glad to hear your good news. I feel as you do. Some day things will change, but not now. So like you I am going to enjoy every day to the fullest.
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Hello Ibrancelanders!
I have been on Faslodex for a bit over 3 months. This is 2nd line tx for me. Anastrazole kept me barely stable with a little progression after 9 months. Just had PET scan last week and Fas appears to be working well so far on my bone only mets, but I see in the PALOMA3 trial the average time to progression (whatever that is worth) is only 4 months, 9 with Ibrance.
So I talked with my mo regarding adding Ibrance and she said she would set the wheels in motion. To my surprise, I already got a letter from my insurance company saying it is approved for 6 months!
After reading some of the se's here, I am wondering if I am jumping into the fire too soon. Life has been pretty good so far on Faslodex. When I talked to DH about adding Ibrance his question was "what would you gain?" If we only knew, right?
Would appreciate any thoughts/suggestions on pros/cons of adding Ibrance. I have zero understanding of how it is supposed to work.
Looks like most have it paired with Femara. Any Fas + Ibrance gals here?
Thank you and hope you all get a good long run on this!
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Jobur, I have been on Fas for over a year, although the TM continues to rise slowly, but scans (CT & bone) are all "stable". I asked my MD Anderson Onc in June if I should have Ibrance added to the treatment plan. His response was, Fas is working and we will not change unless the images show progression. After enjoy almost SE free on Fas for so long, I am a bit happy not to add the Ibrance now. but I do read this thread with great interest.
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No arguing intended.
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Jobur,
Echoing "cling" here. I posed the question to my onc several months ago when the news about Ibrance hit. He said " You know, Ibrance is no walk in the park," and then said we should consider adding it if and when the cancer progressed. In the meantime--which I hope is very long--Faslodex is keeping my cancer stable. So we're keeping on keeping on.
Tina
P.S. Obviously, I also read this thread with interest!
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Cling and Tina2,
Thanks for responding. Is Faslodex your 1st line tx?
I'm wondering if it will still work to add Ibrance after progression on Fas. Sounds like your mo's believe it will, but is there any basis for that? I imagine there could be, for instance if people in the placebo half of the trial who had progression were then given Ibrance and responded. But I don't know if anything like that has been reported.
I hate feeling like tx decisions are such a crap shoot, but that seems to be the way it is. Gather all the best information you can find and then take your best guess.
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I hesitate to weigh in on side effects since I seem to be off of Ibrance about as much as I'm on it due to neutrophils, but I really haven't been feeling the fatigue and my hair's the same as it ever was.
What are you ladies doing with unused pills? Since I'm now on the 75mgs, I've had unused portions of the 125 and 100 bottles--is it safe to throw them away? Is there somewhere I should bring them? When I got them from CVS specialty they were pretty much just thrown in an envelope but Walgreens specialty does a much better job (insulated in a box with an ice pack, etc) but includes the "chemotherapy--handle properly" bright yellow bag which has me thinking I might need more than the trash. I can call the pharmacist, but I thouh I'd ask here first
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jobur,
I think that this might be a case of "be careful what you wish for." I got 5 full years of NED and no progression from Faslodex. I know that this is an unusually large number of months, but it is possible. I can not begin to tell you how much I miss Faslodex since I had very few side effects, none of which lasted the whole month. Well, there was the butt soreness that increased as the amount of scar tissue increased with each passing month. Ibrance is, again, for me, a much harder drug to ignore. Carefully consider if you want to add a second drug to your cocktail. It might be the right thing for you, but it might be a response to the adulation that Ibrance is receiving at this moment.
My only regret is that as my markers headed up, Ibrance was not an option to add to my Faslodex regimen before these new mets appeared on the scans. Sometimes timing is just off, and for me, this was one of those times.
However, if your onc agreed with this change of protocol, maybe this is the right moment for you to add a second drug. I think that Faslodex and Ibrance together has had some good results in trials, and doesn't seem counter-intuitive to me. Now, remember, I do not have an MD at the end of my name.
All the best as you decide what you will do.
*susan*
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Jobur, yes Faslodex is a first-line treatment for me.
Tina
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Roses, I also have a couple of 125 mg that I am not sure what to do with. For now, they are still in the original bottle. If you find anything out, please post. It does seem like a shame to waste such expensive medicine
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Roses, I also have some 125s. Please let us know. I was considering taking them into my MOs office if someone needs them. Myra.
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Good morning Ibranceland! Just came back to check on my buds! Wanted to let you all know that the fatigue is not your imagination. I've been off Ibrance for about a month now, and with each passing week, I get more and more of my energy back. I'm almost surprised at what I can do these days without a nap! That said, the side effects of Ibrance were very tolerable. Especially when compared to treatments like Afinitor and chemo! Looking forward to hearing more and more good news about Ibrance!
I got a call yesterday that I was approved to start Xtandi. This is a drug used to treat Androgen receptor positive cancer. It is in trials now. Most of the trials that fit my profile are closed, so I applied to use it off label. Anyway, just wanted to mention this as a possibility for those of you that are looking into what your next treatment may be. I have started a thread on this and will update on side effects and effectiveness. Hummingbird was on one of the trials for Xtandi and is now on Ibrance. She has been so helpful in making me feel comfortable about taking a drug off label.
TGIF! Have a great weekend!
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Roses, Myra,
On unused pills,
I gave my 125mg to my MO, someone else unfortunately will need them until their insurance comes thru, I will do the same on the 100mg as I'm now on the 75mg dosage.
In my MO office when I started on Ibrance I was number 7, 2 weeks ago, there were 15 of us, I am sure someone can use this drug.
Stay well,
Kathy -
Hi All: I saw my Onc. yesterday . My counts were low,but not enough to stop Ibrance. This is my off week and he feels that they will bounce back. I'll see him in three weeks.I had written a list of side effects for him as I was thinking about them so I wouldn't forget and just passed it on so he could put them in his notes.
The pharmacy told me that they don't take pills back. My Onc. told me to bring my Xeloda to them and he'll make sure some patients that are waiting to get approved can use them.
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Jobur: my Fas is not really the first line tx, but prior Arimedex and Aromasin were discontinued not by reason of progression.
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Hi all,
Had my first blood check today after 2 weeks on the Ibrance and Femara combo and WBC and ANC are low but not low enough to make any change at this point. I'm so happy because so far I am doing very well on this treatment.
Romansma- you are very welcome. And thank You for all the info you have given from your experiences. Helped me tremendously.
Good Luck everyone. Have a good weekend.
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Great news Hummingbird! I wish you continued success on Ibrance
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Has anyone else experienced their scalp itching? It is driving me crazy. I am hoping it isn't an indicator of hair loss since that's what happened when I had chemo years ago. Thanks.
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Hi everyone,
Hope you enjoying these nice summer days.
Hope, glad to hear you are feeling more energy and have decided on a new treatment - I am praying that it works for you, Good Luck!
Sandilee, Good luck to you also - praying that you do well on Xeloda.
I had my 2nd opinion on what to do next, and the onc said it is reasonable to try another round of Ibrance since it is possible that my progression occurred during the 6 weeks I was off treatments and waiting for Ibrance to be approved. I asked whether this was possible since my tumor markers were decreasing on Ibrance, but the scans showed progression in the bones, some fluid around the lungs, and new small liver spots, and they consider the scans to be much more reliable than tumor markers. Both docs agreed that I can do one more cycle of the Ibrance/letrozole and then do more scans at the end of Aug to be sure the Ibrance is not working before moving on to the next treatment. I wanted to be sure the Ibrance is not working before moving on, since the Ibrance combo has been very tolerable for me - I have been on the 125 mg for 5 cycles, so this will be my 6th, and I have not had any side effects except exhaustion and low blood counts (so far they have not stopped me from treatment, just once when there were a couple of days' delay). No hair loss is also a very good thing. So on to cycle # 6, then more scans so that I will be sure it is time to move on.
As far as the next treatment after Ibrance, I had been hoping it would be Ibrance/faslodex, but it seems that unfortunately the hormonal treatments probably aren't working for me (scans at end of Aug will confirm) So my onc has recommended I go on taxol again (was on it with adriamycin/cytosin back in 2008), and the other onc has said Xeloda is another option (probably spelled those wrong, too tired to look up the spelling). I don't like the idea of losing my hair again (taxol), but at least I know the side effects - I get stressed about unknown side effects (Xeloda). Not sure if I even want to do chemo again since QOL is very important to me.
This onc and my onc both mentioned that there are some trials going on at Mass General and Dana Farber for those of you who have PI3 mutations (they use PI3 Kinese inhibitors to target these mutations). However, I don't have that genetic marker, so I doubt I'd benefit from those, but some of you might. She also mentioned there have been some great results for ER- people who have the AKT marker (she mentioned an AKT inhibitor trial with chemo - Immu-132?) but although I have the AKT marker, I am ER+ not negative, so both she and my onc said that they would recommend Taxol or Xeloda for me (ugh). I also asked her about palliative care, and she said it is not just for those who have decided to forgo further treatment - It can be used along with chemo and other treatments, and it has been shown that people who choose to start it early have a longer and better outcome, so I am setting up an appointment after my next onc appointment to find out more about palliative care, even though I don't yet have much pain yet.
Good luck to those starting out on Ibrance, hoping everyone has great results!
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3holly, very interesting talks you have had with the two oncologists. Lots of information to digest there. Thank you for sharing.
hopeful, yes to itching/tingly scalp and I had the same thought about hair. Nope. Haven't lost any head hair, though have had some thinning of eyebrows, ear and nose hairs.
I am on my "off" week. Will have my blood drawn tomorrow to see how my body is responding. Take it from there.
*susan*
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Hopeful, no scalp itching or hair loss. Holly how did you learn of all your mutations? I know nothing about those. Some info please if you wouldn't mind. I. Have the opposite issue of you good scans, rising markers. My onc is truly perplexed and doesn't know what to make of it. He went over the scans with the radiologist very carefully.
Well, have a good day all.....Myra.
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Myra,
I had a genetic test done at Dana Farber, and these types of genetic tests are offered at many hospitals (very big one being done at Sloan Kittering, I've heard). It was free of charge (paid for by the drug company, I think), and it an "oncopanel" genetic test using my original tumor sample from back in 2008, so I didn't have to get a biopsy. Although my cancer is not genetic, the doctor suggested I have the study done since genes can predict how the cancer might mutate to avoid treatment (and therefore they thought the test might help me find a more targeted treatment). Although I was not allowed to have a copy of the test (I asked for it at the last appointment, but they don't give it out), the onc said I have AKT and CDK mutations (he thought Ibrance might help me since Ibrance actually is supposed to target one of those 2 mutations - CDK I think, and there are other trials targeting AKT).
Doctors were puzzled that there was progression since my TM's were decreasing - strange also that your TM's were doing the opposite - increasing while you had good scans (apparently TM's are very unreliable, but I am doing scans again end of August to be sure the Ibrance isn't working before moving on).
I hope you and everyone continue to have good results on Ibrance. Good Luck!
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Hope good luck with your new drug Xtandi. I have been asking my onc about the Androgen blocking drugs since I know they are still in trial. But they seem to hold so much promise. Did you have to get another bone biopsy? So happy for you and hoping that this is the one that gives you a very long run with minimal side effects.
Holly I had both Xeloda and Abraxane (which is a newer form of Taxol). Other than the hair loss on Abraxane it was really not difficult. The Xeloda was difficult for me in the beginning withGI side effects,but after about a month, it became very tolerable. Very little fatigue You do have to make sure that you watch for the hand/foot symdrome. My onc cut the dose to one week on and one week off when that became an issue and things improved greatly. Overall not that difficult a drug. But really hoping that the Ibrance will kick in. Very strange that you TMs went down with the progression.
Sandilee good luck to you on Xeloda. For some women it works for a very long time. -
Thanks Myra and Ibrancers,,
I took my first dose this morning (1500) and will take the second this evening. So far so good. No nausea. I know the hand/foot thing comes later, so I'll be on the lookout for that. I just hope the damn pills work.
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So much going on on this thread! Wishing all of you on new pills the best of luck. I'd never heard of using Androgen blockers before your thread, Hope, but sounds interesting. And my onc said Xeloda is probably the next step if Ibrance/Letrozole fails me, so I'm interested in how that's going, too.
Interesting about the new trials and their targets. I especially like that there are some promising things on the horizon. I keep telling myself I don't need to cure cancer, I just need to keep going long enough for there to still be options. I got a brochure in the mail from Pfizer yesterday that used the word "pause" as in "Ibrance can pause your cancer"--I hadn't heard that before but I think it's a good way to describe things.
I got my mid cycle blood tests for the 75mg Ibrance yesterday and for the first time ever while still taking the pills, my neutrophils are *up*! They were 1080 when I finally was able to start the cycle and now they're at 1400, so relieved! Now I just need to get some good scans.
Also, I'll ask my onc about the left over pills and let you all know what she says. I think I might be reluctant to take someone's left overs because the quality degrades if they're stored improperly (like over 77 degrees, and the temps here are in the 90's right now), but on the other hand, still probably better than no pills at all. I'll see what she says, though.
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Sandilee hope that the Xeloda does a great job for you and that its not too difficult.
RosesToeses I feel the same way that you do. I am not going to cure this, but I want to be around long enough that there continue to be more options. And there are which is so encouraging.
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Pearlady, thank you for sharing your experience with Xeloda and Taxol, it is very helpful to hear about your experience with these drugs. You are amazingly strong, and I'm sure that better more targeted drugs are coming along soon(so I agree, Roses, that just stopping the progression is the goal till then).
Sandilee, glad you are off to a good start with the Xeloda!
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Have lurked for awhile, I am to start Ibrance and letrozole as soon as insurance approves, feeling a little nervous. Marilyn
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Marilyn, Welcome ! You will learn a lot of great information here! I am just finishing my 4th cycle and feeling well. I have found this treatment very tolerable.
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Regarding unused drugs:
In my oncology office, leftover drugs are accepted and are distributed in charitable clinics.
In my opinion, this drug is so new that I would recommend holding on to the pills for up to six months in case they come up with some other usage or combination. Regarding whether it is a chemo drug or not: my advice is to pierce a pill and shake out some of the powder. Yikes it is a brilliant yellow powder that looks definitely like a chemical. So maybe we are all correct but for me I am grateful to have it in the fight against this terrible disease. P. S. for those on the 100 mg pills but have 125 mg left, it might be worth asking at a compounding pharmacy if they can be recycled with the lower mg. That sounds desperate but there are some ladies who are paying a very high deductible and it seems horrific to discard such valuable resources. Carolyn in Music City
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Hope
Wishing you great success on the new drug!!!!!
Babs
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Thanks to everyone for responding about the itchy scalp. I got my first set of lab results yesterday and so far everything is within normal limits, so hopefully they stay that way.
Prayers for all of you who are having scans or having bad side effects.
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My blood work [which autocorrect keeps trying to make bloodworm] is back. The "essential" numbers are normal, but my red blood cell counts are elevated. Dr. Google indicates that I might be on a strong drug! Surprise! I see my oncologist tomorrow, and will be interested in her opinion. Still waiting for the all important tumor marker. That is the number that will give me some real feedback on how this drug and my tumors are getting along.
This off week I have not gotten the boost of energy that I had last month. I just hit a wall around 7pm, as we are sitting down to dinner. I am used to being able to get about 3 hrs of work done after dinner and that isn't happening these days. I am almost too tired to chew. This type of fatigue, a kind I can't just push through, is new to me, and to be honest, I don't much care for it. I have three huge and complex projects on my desk right now, and not enough energy to do good work on them each day.
I am trying to remember to take a bit of time before starting dinner preparations to sit in the garden, admire the tomato plants and all the herbs, but some days even that feels like too much and/or a waste of time.
My little vent.... *susan*
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Phew. Last month's major jump in the CA27.29 was reversed! Now, I would like to see some more downward motion next month.
*susan*
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All right, Susan!
Tina
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Great news Susan! My CA 27/29 has gone from 203 to 156 to 106 since starting Ibrance in April. Will have them done again next week. My onc is very happy with these numbers
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Susan, that's wonderful, congratuations!
Edited because I was a little dimwitted last night: congratulations to you, too, Lynwood!
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Lynn... so great! I hope to have such success too; one blood draw at a time. *susan*
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Good news for susan and Lynnwood! I'd love to see this drug have some success on this board! You gals go!
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Yeah Susan and Lynwood!!!!! Just what we all want to hear!!!!!
Babs
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HI ladies! I'm joining here as I should start Ibrance in the next few days. I started the Faslodex today. I will add this to my favorites and do some reading on side effects. I'm 38 with 2 young kids, a 3 y/o boy and 7 y/o girl. I still work full time as a social worker.
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Welcome and good luck with Ibrance, CJanet!
Susan and Lynwood, great to hear you got positive news! Susan, I think the garden may help you with the work stress, so don't give up the garden, it's therapeutic!
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Congrats to Susan and Lynnwood. Keep up the good stats. Welcome to this thread Cristina. Read the beginning posts. There is a ton of info on SEs.
Have a wonderful day all...Myra.
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VLT. Dx 11/98 - IDC stage 2b 2.5 cm 0/15 node ER+/ PT+/ HER2-
Surgery - Partial MX -15 nodes resected
Chemo 5months AC- FEC
Radiation -Left upper quadrant 7weeks
DX- 4/12 Advanced metastatic disease to bone
Scans showed 70% coverage of bone including scull & face
Extensive damage to hips, lower spine, lumbar & ilium
Femera- 32 months
Exgeva. -30 months
Faslodex - last 7 months
I was told by my last onc that I didn't meet protocol for Ibrance because I failed on letrozole.
Currently the faslodex is just holding. No improvement. Any help would be greatly appreciated.
My current onc is gen oncology, not a BC specialist. Maybe a big mistake. Close to home. Hard to transport 2.5 hrs to cancer center.
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Tumor markers up third month in a row on Ibrance. Going to have a PET and an MRI. He said even if the scans don't show progression, he would still take me off because in his experience, which he has a lot of, markers moving up means treatment not working. So, I guess I'm out. I'll go lurk on the Xeloda thread and see what goodies are in store for me.
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Darn. (Insert stronger word.) I'm sorry to hear that, Stefanie. Let us know.
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VLT, there are people who are getting the Ibrance with femara, even though they have had femara in the past, and more and more are getting the Ibrance alongside Faslodex. I was NED for 5 years on Faslodex alone, so it can do some good things if you are a "responder." The NCI centers seem to be getting the approvals based on the most recent research. Have you considered having a "consulting" oncologist at the hospital 2.5 hrs away? This seems to be more and more common for people who do not live near a major center.
Stef, the words that came out of my mouth might get me banned. I am really disappointed for you.
Still processing my own oncologist appointment from this afternoon. Will post more later.
*susan*
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Christina good luck on Ibrance/Femara. Praying that you have a great response and minimal side effects,
Stefanie so disappointed that your TMs are going up and you are off Ibrance. It seems so random whether it works or does not work. I had Xeloda and its really not that bad. The dosage can be adjusted if the hand/foot issues become a problem. Please keep us posted.
VLT I was on Femara with NED for almost five years. So far the Ibrance/Femara is keeping my stable. My onc felt that the addition of the Ibrance could trigger the Femara to work again since I had such a positive response in the past. My onc has also told me that when the Femara stops working, Ibrance/Faslodex is next.
Have a great day everyone. -
Hi, ladies... For those of you on Faslodex + Ibrance, I have a question... I started Faslodex 2 days ago. I was able to get my Ibrance RX sooner than expected, so picked that up yesterday, but haven't started it yet. So my question is... Do I need to start Ibrance the same day of the month I start Faslodex so that the labs they do on the day I get Faslodex will reflect what's going on with Ibrance as well? I don't know whether I should start Ibrance right away -- even though it will two or three or more days off from my Faslodex regimen, or if I'm overthinking it. I emailed my UCLA onc's PA, but haven't heard back yet. My local onc had said earlier that waiting even a few weeks to start the Ibrance was fine (when we anticipated a delay in insurance approval that didn't happen). But I'm confused about the possible need to coordinate both meds cycles.
I also have a raging headache today, I'm guessing from the Faslodex, so it would be nice to let that simmer down before I add Ibrance.
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Deanna,
You just can't get away from me today, ha ha! Was going to mention this on the other thread, but trying to make my posts less long and boring.
When I talked to my mo yesterday, she told me not to start taking the Ibrance until the next visit when I get my Faslodex and Xgeva shots. I believe this was to help coordinate blood work and treatments as I know she mentioned more frequent blood work once I start Ibrance. I will be getting my pills next week and start on August 18th.
Talked to the specialty pharmacy just now. Sounds like my co-pay for Ibrance will be $80, and a discount card from Pfizer will bring it down to $10 a month! I am so pleased and amazed.
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stefajoy
My bc tumor markers also went up 3 mos in a row but started to go down the 4 th month on Ibrance/Femara. My MO felt that I should give it more time after the 3 mos since, from her experience with Ibrance, it can take a little longer " to kick in" I wasn't happy to wait but now that my markers are going down maybe she was right? Possibly discuss this with your MO. My MO was involved in the clinical trials with Ibrance at MSKCC. I'm certainly not sure what the right answer is!!!!
Babs
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Deanna.
I'm going to start Ibrance tomorrow if it came in the mail today. And I got my shot Wed, like you. My butt is still sore. No raging headache from the Faslodex. Had that the day of and day after the shot. I am going to take it with dinner tomorrow night likely. I'm nervous.
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That's good news Babs. This treatment can absolutely take a bit longer. Can't, congrats on starting. Don't worry too much on the Ibrance, it's pretty easy on you. Just take it with food, for sure. Biggest issue is a few weeks in the blood counts go down so you get tired. Really hope it works!
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dlb, I start each new cycle of Ibrance the day I have my Faslodex shot, after the doctor visit and shot. It certainly simplifies things. I only go in once between cycles to have blood work this way. Otherwise, I would have to go in an additional time for Ibrance blood work. Also, so many people, including me, have needed to lower doses (usually early on). Having the combined Faslodex/Ibrance 4-week doctor visit before I start the next cycle of Ibrance has allowed me to eliminate going in to the doctor to consult on Ibrance between cycles. Also, it is much easier to remember to start the new cycle after the 7-day break this way.
Good luck on the new med!
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This thread has been very informative. I have been lurking on this site for a while and I was looking for others who have been undergoing a similar treatment to my own.
Today I am starting week 3 of Ibrance and last Monday I had my second cycle of Faslodex injections. So far my bloodwork is fine and I have experienced minimal side effects.
Thank you for sharing your experiences.
edit 8/19 I spoke too soon: day 1 week 2 cycle 1 I got a horrible rash on my hands, very similar to poison oak. It lasted about 5 days and it was awful. I used .1% prescription Triamcinolone cream and it helped.
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Babs, thank you for that advice! I was thinking that three months maybe wasn't long enough to tell, but its scary when you are gambling with your life. He just didn't like the direction of the markers which, btw, are relatively low (but outside of normal) anyway. So I am going to wait and see what my PET and MRI say next week. If there is no progression showing, I may talk to him about waiting one more month. You gave me the boost of confidence to try that.
I saw Sandilee over on the Xeloda thread, so if I do end up over there, I'll already have a friend there.
Stefanie
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Welcome Pup-pen! Glad to hear you are doing well with your treatments
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Has anyone had swelling while on Ibrance? This drug is really easy on my body but I now have swelling in the leg and arm, all on the side of surgery but that was 4 years ago. Dr ordered compression stockings which helped but now arm is swelling and if not better will order compression sleeve. Just wondering if this is a side effect or just my body?
Happy news and congratulations for all those getting results from Ibrance. I will have a scan done Thursday to see if Ibrance is working. TM came down but Dr doesn't rely on just TM.
Praying for those looking for other treatments and those having side effects. Be strong.
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Thanks for the input about starting Ibrance two days after my first Faslodex shots. After hearing back from my UCLA onc's PA (she was in favor of starting it now) and thinking about it and talking to my DH, I just popped my first $550 pill ever. (I still can't wrap my head around the cost of this stuff!) So I'm technically 2 days behind my Faslodex schedule this month, but I think it will be okay. If necessary, I'll delay one or move one or the other up a day in the near future so that they eventually start on the same day of the month, which admittedly will be easier to keep track of and ensure that labs fall on the optimal day for both. But the bottom line is, my TMs were up almost another 50 pts. in less than a month, and I just didn't want to go at it halfway when I was fortunate enough to get the Ibrance so quickly.
Editing to add a question: I noticed in the information print out from UCLA, there is mention of bleeding more easily. I take a lot of nutritional supplements, including some that increase bleeding, such as Vitamin E and curcumin. Has anyone's onc cautioned against taking these or any other supplements?
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Hello fellow Ibrancers! I have been following this thread off and on since my official diagnosis in May of this year with Stage IV Invasive Lobular Breast CA with mets to spine. There was not even a palpable mass in my breast, only a very miniscule, less than 5 mm spot, on my left breast new since last Mammo! Well darn it! No initiation period with Stage II or III even! Right to Stage IV for me! This is scary stuff. I just started my 3rd cycle of Ibrance after taking 3 weeks off for my Neutrophil counts to improve. I started on 125 mg and had to stop at 2 weeks. Then went to 100 mg and went all 3 weeks, but the Neutrophil count tanked at the end. So 3 weeks later my count was high enough to start the 75 mg dose. I am so scared that I will not be able to keep my Neutrophil count up high enough to stay on this drug. I am reaching out for help from anyone in this community to see if you have suggestions for keeping the Neutrophil counts up. Supplements, treatments, anything? I am desperate! I so much want this drug to work so I have some good time left with my family. Thank you for anything you can share.
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That sounds like a good plan, Stefanie.
Capinva, if your swelling is lymphedema, you should be seen as soon as possible.
ComingUpRoses, welcome. Remember that you still have the hormonal therapy working for you, too.
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dlb, I stopped taking baby aspirin when I started Ibrance due to the increased bleeding side effect. I still take turmeric and fish oil. Now that the aspirin is stopped, I no longer notice any increased bruising.
Quick note on random side effects:
I think Stefajoy mentioned swelling of lower eyelids a while back. I too developed puffy eyes - both upper and lower eyelids. It is annoying but tolerable.
I also noticed I can go days without washing my hair and it doesn't look greasy. So odd!
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Deanna you have inspired me to start tonight during dinner. Please let me know how you are feeling today! I got the pills yesterday but chickened out last night.
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Babs, would you mind giving me the name of your MO?
Any other ladies out there with tumor markers that kept rising until after the third month on Ibrance and then they stated going down?
Stefanie
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Stef
I just sent you. a PM
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Hi Stef, I'm going for scans next week so I don't know really what's going on, but my markers went up 3 months in a row, too, before going down a little bit (I even put the graph on my blog, lol!). I should know more after the CT scan, but the down tick made me happy with all the trouble I've been having with the white blood cells.
Wishing you some good news with it!
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ok. I have a question. It's probably been answered before but I can't handle all of the scrolling back.
Is anyone super fatigued on an OFF week? I'm day three off and I don't want to move and I'm so tired but can't sleep (of course). Is this possibly a normal pattern?
It's probably still better than Xeloda so hopefully my scans this week will be good enough that he'll let me try it one more month.
I'm supposed to make dinner but I really don't want to. I made DH order in yesterday. I'm a bad wife.
Soo sleeeepy.
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Stef,
Why yes. I am beaten on my off week. In fact, I feel slightly pummeled on the on weeks as well. I am working hard to maintain my regular schedule, but it feels harder and harder. My oncologist thinks that my body will adjust as each month passes and has suggested that I wait to make any decisions about my "career." I think you have been on this drug longer than I have though, so perhaps this is a warning to me.
*susan*
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Susan,I just finished my third cycle. Most of the time I am not as fatigued as I was during the first cycle . I generally have lower energy than I used to, but it's not horrible.
I have a scan on Monday and I took a xanax the last two nights because I'm anxious. Maybe I'm having a Xanax hangover
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I think I feel a little better during the first week, after the break. But overall, I am more tired now (cycle five) than I was a few months ago, even though my dose got lowered. I used to feel like I was running on 70% power, but lately it feels like 50%. But I'm willing to stay on it.
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Definetly very fatigued, I can fall asleep during commercials then wake up for the show. Don't know if it is the Ibrance, new pain med w/o acetaminophen (no increase in dosage) or depression. Just started on cymbalta, we see how that does. I don't recognize much difference from the on weeks vs. off week. I am anemic, don't know if that matters.
This drug is not a walk in the park, good day to all....Myra
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I also feel better during the first week, after the break. Will take the last pill of cycle 4 tonight and am pretty fatigued. My onc says the combination of Femara and Ibrance is a recipe for fatigue since both meds cause this. Other then that, I feel very well. I think I am adjusting as the months go on...bring on cycle 5!
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I'm another one who doesn't feel that great during the first week off but better the second week after (I've mostly had multi week breaks while waiting for my counts to go up, so the second week thing may be more closely related to that). I think for some of us, it just takes a little longer for those blood cells to bounce back.
Also, I'm on my Ipad and can't scroll back well to see previous posts (sorry!) but someone was asking about swelling? I've had lymphedema for a couple of years, but I've definitely noticed it being worse since starting the letrozole/Ibrance. Not sure which is doing it, but I think it must be one of them!
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Hi,
Just started the Ibrance last night. When might I notice the fatigue building? In a week? 2 weeks? a few days? next cycle?
Thanks!!
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I just finished week 1 of 125mg ibrance. Stopped due to side effects... Taking 1 week off, then trying lower dose. Hoping for no side effects🙏
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yes... Let's talk..Side effects after 1 week??
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yes! Hair thinning greatly, brittle after only 1 wee
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just started ibrance ( have been on faslodex since May 1st) was wondering if side effects decease the longer u are on? Is anyone still working full time on ibrance and faslodex??? Mouth sores, fatigue, diarrhea, fainted, runny clear nose (like allergies!) Can I be allergic to the drug? Had migraine for 3 days... Had to stop drug! Week off and then lower dose begins... Immediately feeling better off drug. I want to go back to work so badly... I am teacher. Hoping for good news from all of u on ibrance !
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yes my blue cross blue shield covered it
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Piemaker, I work full time on Faslodex/Ibrance/Aromasin. No issues. I just try to wash my hands often and use sanitizer to avoid getting sick.
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so very glad to hear se less after lower dose! Thank u!
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I have worked full time all ten [plus] years of this breast cancer stuff. AC, rads, Aromasin, aromasin with Faslodex, Faslodex alone, and now Femara with Ibrance. Ibrance has been the toughest so far since I have less quality brain energy each day than I am used to. I am really hoping that as my body adjusts, this will get better. Strangely, the physical side effects of aromasin were harder than this with severe bone pain, and the development of neuropathy. No hair loss on my head, no brittle hair. I am still on the 125mg. Oncologist wants me to stay at full dose as long as possible while still maintaining my quality of life.
There is no one response to any of these drugs. In fact, the range of experiences just in this small group is quite surprising.
*susan*
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roses, please correct me if I am wrong. I looked at your graph and it looks like your markers dropped at the third reading, not the fourth. I also started in April but my markers are still going up as of August. I just want to make sure I have the correct info because I have a big decision to make and I want to take everything I to consideration.
Thanks.
Stefanie
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Stefanie,
Are you considering your scans along with tumor markers? I will be doing my first scan and the next set of tumor makers on Monday? On Wednesday, I will meet with the ONC for an assessment and status. I am thinking about the questions to ask, right now I feel fine with minimal SE's, however, that doesn't mean everything is okay. Do you feel the tumor markers are more important than the ct scan (or scans) ? When you say, markers are increasing, what does your ONC say about this, is it normal with the hormonal protocols?
Kathy -
Has anyone's onc discussed 125 mg vs. 100 mg dose and effectiveness? Do you know if the patient's weight matters? Or if dose is related to fatigue level? At my last appointment my NP said they would try me again at 125mg for my next cycle. I feel like they will have to convince me that it really is important to go back to 125mg.
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I think the dose is more based on WBC and ANC even more so the complete neutriphils. I did one cycle at 125 stopped early. Restarted at 100 completed cycle waited 2 weeks for counts to come up then did second cycle at 100 completed and had to wait 2 weeks to restart. Forth cycle at 75 counts at 15 days were good will have blood work this Friday along with scans to see if it is working. I am taking it along with Femara. No real SE problems except for blood counts
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I asked my ONC about the dosage and he said in the trials both doses (125 and 100) had equivalent results.
Kathy, my tumor markers run in low numbers, but the fact they they are moving after being stable for three years does seem to tell a story. The scans are more important than the tumor markers. Some dr.s don't even use them. Also, some peoples markers are sensitive to the cancers and others aren't, so it's all individual with regards to that. I also have a scan tomorrow. I am having total anxiety and a little depressed this weekend. Can't wait for it to be over and know where I stand. Good luck with yours.
Stefanie
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Aha! That's what I wanted to hear about doses, Stefanie. I'll be thinking of you tomorrow. They will call you tomorrow with scan results, right?
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Stefanie, I guess you're right, my markers jumped 20 points the appointment when I stopped the Faslodex and then kept going up twice more while on Letrozole/Ibrance--in my head, I'm thinking 3 jumps, but it was only twice more after the switch.
About the 125 vs. 100 vs. 75, it definitely worries me since I'm now on the 75s, but it was my white blood cells rather than discomfort that forced the changes. Even on the 100s I was barely keeping out of hospitalization numbers for a few weeks there, so I try to remember it really makes no sense to fight cancer just to die of sepsis.
Also, I've definitely had the allergy like runny nose as the cycle goes on. I don't think it's a true allergy, though, just part of the general nose/throat/stomach irritation.
I'll be a lot happier to get results from my scans this week and know more about what's going on. Wishing everyone good luck with them, sounds like a whole lot of us are getting scans this week!
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I am fortunate that my DH is a physician with friends in the biz. I GEt my results same day, and often immediately. If the radiologist isn't busy he'll bring us in his office and show us the images himself.
When I had my last MRI the dr. was giving my husband the results (not good ones) before I even got off the table. My ONC says he can't keeping with us, as we get things done faster than he can. Lol.
I'm hoping to have good news tomorrow. Right now I'm just freaking out a bit
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Good luck tomorrow Steph. You will be in mt thoughts and prayers. Myra.
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Stefajoy, Roses, and Kathy,
Wishing you all good results on your upcoming scans. Sending positive thoughts your way.
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Wishing best of luck to Steph and Roses as they get their scans. Prayers said for positive results
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Sorry Roses, good luck to you as well. All the best thoughts and prayers. Myra.
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Prayers for everyone getting scans tomorrow.
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Good luck today with the scans, Stefanie and Kathy, saying prayers for both of you!
Duck1255, wishing you well on Friday, too!
And thank you, everyone, for the prayers and good wishes for my scans on Thursday (results on Friday--Stefanie, that's really great that you don't have to wait for yours!)
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Hi Ladies, I have been reading this board for about two months and learned so much. I am on my last week of my third round of Ibrance (with Femara). My counts have allowed me to stay at 125 mg. I've had the same fatigue as most of you. My only weird thing has been low sodium counts.
The past few days I have experienced feeling faint. I can usually sit, eat something ( usually salty) and then recover. I noticed many of you take your Ibrance at night. I'm wondering if that would help. Any suggestions?
Prayers to all getting scan results this week.
Kaption -
thank you kaption just got ct scan results profession so now I am to start faslodex and ibrance. Only one concerned because I am on coumadin. Anyone else take deep muscle shots on coumadin. She is going to have me stay sitting on ice packs for one hour after shots. I had faslodex 4 years ago worked great for 18 months. Hope these new buggers were not around 4 years ago to become drug resistant.thanks for this sight you lady's are all so helpful.
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Good luck Stefajoy, Roses, and Kathy on your scans this week. Stefanie, hoping you check in today.
I've only taken the Ibrance twice now, so no major effects yet, though I do feel "funny" and have been sleeping more.
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ShetlandPony, my once told me that he has spoken to a lot of people running the Ibrance trials and they are not seeing a difference in efficacy with lower doses.
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Thank you so much, JFL.
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Cristina, I just finished cycle 2 and I didn't notice much first cycle but this one I think I was feeling kinda tired the third week.
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Dear Ibrance gang,
My doctor last week said they are seeing efficacy at all levels of Ibrance. I was unable to stay at 125 and am now on 100mg. I am either unobservant or lucky as I have few side effects from Ibrance/Femara and I am starting the 4th cycle. However, my hair is much more fragile and I am sure there are other small changes yet to come. Stll happy with this medication. I hope I get the full run of it. Carolyn from Music City
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Hi ladies... Just about to finish up Cycle 2 and it hasn't been too bad. Still on 125mg. I am starting to lose long strands of hair. I had a really bad joint pain in my hands for about a week but it subsided. The skin on my hands and feet are really dry and are starting to peel on the palms. I take a Zoladex shot monthly so the menopausal symptoms are killer and I don't get much sleep. I was put on effexor which is supposed to help with the night sweats and hot flashes. I also developed acid reflux. What's good to take for that? I was told to get Zantac, but wanted to get some other opinions. I also switched my care to Johns Hopkins as I was not happy with the care I was recieving. Blood work looks good.. Whatever that means... Hence apart of the reason I switched... Very difficult getting access to my information or clear explanation on my results. I learned more from you all then the oncology team I left... Whew... Thanks for letting me vent. Sending all those waiting for results positive vibes.
Monika
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monika, I'm so glad you switched to a more informative group and probably better facility. I take Pepcid AC for acid reflux and for me it works pretty good. Some of the initial side effects do subside. I'm not sure how much of them are from your injection. I'm not familiarwith that. Blood work looks good usually means your tumor markers are at least stable and not rising.
For any of you following my scan day, my PET showed no change from the last one three months ago. MOs first choice was to switch me to Xeloda, (because of my rising tumor markers) but feels ok about me staying on the Ibrance for another month or so and watching it. so, I'm back in Ibranceland. I will no longer complain about its SEs, as it still seems better than the alternative
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Ok, Stefanie.It's going to be kind of a long month, eh? Stable scan, now the TMs need to start moving down.
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yes, Shetland. But I feel like the cloud of gloom and doom has lifted and I feel so much better.
It's amazing what scanxiety can do to mess with your head.
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I know it. I have a scan coming up soon.
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Welcome to our newest newbies!
And Stefanie, congratulations on the stable scans! Hopefully Ibrance will start working some good on those tumor markers this month, too.
Kathy, hope the scans went well, saying prayers for good results for you!
And, Monkia, so glad to hear you're seeing an oncologist who can give you the time you need. MBC has so many ups and downs and confusing things, I think it's really important to see someone who can help you figure things out and give you good context, which requires seeing you and talking with you!
Also, thank you to several of you who shared about the different doses not seeming to change effectiveness. I'm trying to believe my blood issues are a sign that I might just metabolize more of the drug and hope it's knocking the cancer just as much as it is my neutrophils. I guess we'll know for sure when I get those scan results!
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Steph, congratulations on your stable scan! Stable is always good! I have an appointment today to go over my scan results with my onc. The stress associated with scans is unbelievable, it's literally our lives on the line.
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Steph, congrats. You and I are in the same place. PET scan showed stability and improvement but TMs are rising. MO trying to figure this out. Very frustrating. Is it working or not?
Smart move Monika. Your care at the hospital was very poor. Can you tell me who you switched to? My son and DIL are having a baby anyday now and I amgoing to need a MO up there. I am sure we will be up there a lot.
Good luck to all getting results and taking scans! Myra.
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Stephanie great news on your scans. So glad you're still in Ibranceland and hope your markers start to go down or at least stabilize.
For someone who asked, I have also always worked full time ever since I've been Stage 1V. For me, the side effects of Ibrance/Femara are more of an annoyance than really difficult. I've had IV chemo for Stage 1V and this is much gentler and easier for me to tolerate. The supplements i take have helped me keep up my energy and keep fairly good blood counts. Still able to stay on the 125. My hair is thinner, but that's a small price to pay. I'm thrilled to have hair.
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Monika, I use OTC Zantac 150 for bad heartburn and it has worked well for me. I usually only have to take it for a few days. I also started taking generic Effexor last month. Mixed results with that. Still get flashes of course, but don't seem to be quite as bad, I'm sleeping a little better. I am only on the lowest dose, 37.5mg. Have you noticed any se's from the Effexor? It seems like it makes my legs ache when I'm lying down, but that is not on the list of se's. Congrats on switching your care to John Hopkins! Hope you get great info and results there.
Stefajoy and Myra, Yea for stable!! Wonder what is up with the TMs? Sounds like they may not be very reliable indicators with this drug. My TMs have never varied much so I rely on scans to show what is going on.
Lynwood, Hope you get good news today.
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Had my appointment today with my onc to go over my scans. No organ involvement, bone only. Some bone areas now show healing/ scarring where the cancer was. Tumor markers continue to go down with each cycle. 203,156,106,and now 80. My onc said she spent the weekend at a conference where they discussed Ibrance and they are seeing some really positive results. I will be staying on the 100mg
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Monika, i always ask at the lab for a copy of my bloodwork. I have the one just before I started Ibrance and the one I did a couple of weeks ago after doing the first cycle. You can look up on the Internet what all the things mean or ask the really knowledgeable ladies here.
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Lynnwood that is such good news. Really happy for you. Keep it going.
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YAY Lynwood! Can't think of a better report! So happy for you!!!
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Happy Tuesday everyone! I love reading all of these posts. Such good info shared here - what works, what doesn't work, what's next, encouragement, etc. This site definitely helps me get through this. I have finished my 4th round of Ibrance/letrozole (still at 125 mg with 10 days off instead of 7 - seems standard for my sluggish neutrophils). SEs still present - fatigue, minor hair thinning, mouth sores at end of week 2 (but they only stay around for a day or two now - guess my body is adjusting). The triple digit heat here in Texas isn't helping. It really zaps me quickly. I had a PET scan yesterday and I am hoping to have results Wednesday when I see my MO. I should also have TM results tomorrow. I haven't had the TMs checked since initial bloodwork at diagnosis(February), so it will be interesting to see where they stand. I have been off of my anxiety meds for a while, but decided to begin again last week due to scanxiety - ha. I get so mad at the time I waste worrying about test results. I know it's natural to run through all of the scenarios in our heads, but with no control over the results, why do I waste this time?? My worrying changes nothing! This scanxiety thing is very frustrating! My rant is over. Hopefully I will have results to report tomorrow. Hugs to all.
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Lynnwood I am so thrilled for you!!!! Keep it up......Myra
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Lynwood that is SO wonderful. This drug looks like its definitely working for you . Yay!!!
Myra, what cycle are you on? Same as me, starting fourth? My MO says a lot of ONCs don't even use tumor markers as an indicator, they just go off the scans. But his great experience tells him upward moving tumor markers (in someone whose markers actually fluctuate) means things are moving in the wrong direction, regardless of what the scan show. Mets dont always appear on scans (in the bone especially) until they are big enough to make a noticeable mark. In any case. He suspects that if the tumor markers keep going up for another three months, there might be something to look at on a scan. Still, he was okay with my request to stay on Ibrance and watch it. Its such a new drug. I really want to give it a chance. I mean really how much experience can he have with this particular drug? If my markers keep moving up, whether or not I go on Xeloda now or after a little more progression wont make a huge difference. It will do to the cancer whatever its going to do, no matter.
I'm totally good with that and happy now.
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Lynnwood, Stephanie, and all who got good scan results recently - I am so excited for all of you! So nice to hear of such positive results with Ibrance. Congratulations!
Just saw my onc and I will be staying on the 125 mg even though my counts have not rebounded at all on my week off. They are very low, but Neutrophils are still at the bottom of normal - so not going to reduce dose. I know it's very early for me, just finished first cycle, but I feel great - no side effects at all. I so hope this is working!
KKsMom, and all who are still waiting for scan results - Good Luck! Hope to hear great news from you.
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Steph, almost done with my 4th cycle. TMs and bloodwork done today. Hemoglobin only bad results. Everything else good. Will see what TMs show. Keeping my fingers crossed for the start of a downward trend. My MO went over the scan with the Radiologist for half an hour and concurred with his opinion. Myra
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Hello Everyone! I'm Ashley and I'm 28 years old. Diagnosed on July 20th with Stage IV mets to pleura. I was diagnosed with Stage II in 2011 at age 23. I have 3 small children- ages 2, 4, & 6. I've been reading this thread for some time but I've never posted. I'm currently on Ibrance/Femara and Zoladex. I'm on my 13th day of cycle one and have had minimal side effects!
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Its really good to hear Ibrance is effective at the lower dosage. I'm on the 75 now and my counts are finally staying within range. That is really the only side effect other than mild fatigue but I'm working full time so that's part of it plus I don't sleep a full night anymore
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Welcome Ashley! You will find LOTS of support and valuable information here. I am also tolerating Ibrance/Femara well, fatigue being my main complaint. Duck, I will be returning to work Oct 1st and am concerned about how tired I will be. I am a nurse and my job is very physical and I am on my feet all day. I do not have the option of part time work for financial reasons and the oh so important health insurances
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Lynnwood, what a good report! Happy for you. (It is doubly encouraging to me since I also have ILC.) What conference did your onc attend where they discussed Ibrance?
Myra, waiting and hoping for lower TMs for you.
Welcome, Ashley. I'm glad your drug combo is treating you well. I think that your age will help minimize your Ibrance side effects. I have to say that it just seems especially sad and wrong that a young mom like you has this diagnosis.
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Welcome Ashley. I too have mets to my pleura after being Stage I four years ago. The Ibrance is very tolerable. Good luck to you.
Steph- great news! Glad you get to continue your Ibrance.
Thoughts and prayers for everyone waiting for scan results.
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Hi Ashley!! Welcome!! I too am on the same treatment plan that you are on and it hasn't been too terrible! Let me know how your menopausal symptoms go... That is the worst part for me!! Glad you decided to write!! These women have been and Godsend!
Monika
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Myra... I will be seen at Johns Hopkins Hospital They have multiple locations throughout the Baltimore metro area. My new onc is also a psychiatrist...2 for 1 special!! Let me know if you need more info.
Monika
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Lynwood-great report!!!!!
Steph-so glad your scans were stable. Hopefully your TM will now start to go down like mine did!
I have worked F/T throughout BC- during dose dense AC & T, 33 radiation treatments and now Femara/Ibrance (125 dosage). I find that my biggest complaint on this combo is fatigue. I get home from work and crash each day. I'm also experiencing joint pains, a runny nose, and thinning hair-all a small price to pay if this combo works for me. My TM went up for the first 3 months and have been going down the last 2 months. My 3 mo scan was iffy-nothing definitive. I'm getting my 6 month scans in September. I know the anxiety you all feel with the scans. So much rests on their results!
To all those getting or waiting for scan results I am hoping and praying for good results!!
Babs
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Hi everyone, I am thinking of you all as you go through the anxiety of scans, and hoping for great results. My doctors give very little credence to tumor markers and seem to rely on the scans. Lynnwood and Steph, great news! I just started my 6th cycle of 125 mg Ibrance/letrozole, then will scan again at end of month to confirm that I need to move on (but hoping for a miracle since TM's were dropping and since I'm feeling well despite the scans).
Welcome to the thread, Ashley, and good luck with the Ibrance. The only real side effects I've had are the low blood counts (white blood cell count was 780 last week so I had to take a few days off) and tiredness, but they always seem to rebound in a few days, at least enough to go back on the ibrance. I hope you have a long run with this, and that you can get some help with your young kids when you need rest.
Monika, my opinion is to stick with the Zantac 150 and watch your diet on Ibrance, and take Tums as needed. I have noticed that my reflex is much better since I stopped drinking tea (hard for me since I'm Irish and drank tea all the time). Also, it helps to avoid fried foods and eat smaller portions. I've had bad reflux ever since the radiation in 2008, so I have been on Prilosec ever since, but I recently switched to Zantac after hearing news reports of Prilosec linked to heart attacks. At first I heard that a trial at Dana Farber was prohibiting Prilosec while on Ibrance (you can do a search and see conversation on prilosec - it is different from Zantac since it releases for 24 hours), but my doctor said that ban is no longer in effect. However, I decided to stick with Zantac since it has been around longer and does not seem as controversial, and does not release for 24 hours which sounds like it could interfere with Ibrance. My doctor said to try to take my heartburn med as far away from the Ibrance as possible (11 hours away was suggested, and I think at least 4 hours away from all meds for Tums, but you should ask your onc to confirm as there are differing opinions). I also sleep with my head elevated (sitting up if it gets really bad). Hope you can get relief soon.
Myra, that is exciting news about your son and DIL expecting soon, nothing like a new baby to lift your spirits!
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Hi 3Holly. Can you explain why your onc says to take the Zantac and Ibrance as far apart as possible. I've been on Prilosec for a long time because I "used " to have Barrett's. (Long story)
I take everything first thing in the morning. I've noticed many of you take the Ibrance in the evening. Is there a special reason?
Thanks. I've learned so much from all of you. I'm my onc' first Ibrance patient! I'm finishing my third round this week. -
Kaption, welcome! I take my Ibrance at dinner because that is usually my biggest and most consistent meal. You are supposed to take it with food to prevent nausea. I have not had any nausea doing it this way so I will stick with it.
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Hi Kaption, I take the Ibrance at lunch and take the Zantac right before I sleep since that is when my reflex is worst. I believe the spacing has to do with antacids interfering with the absorption of the drug.
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Thank you! I'll talk to my onc about it.
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Happy for you, Lynnwood, great news! Myra, good luck and let us know how it goes.
Also, about working, I work my usual 30 hours a week and have no problems with it. I'm more tired as the 21 days goes on, but it's not that bad for me, just means an earlier bedtime.
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Hi All,
I am on day 6 of round 3 and day 5 was NOT miserable! The last two rounds, day 5 was my nausea-I-feel-lie-crap-day and this month it wasn't. I am quite gleeful [taking whatever I can.] I managed to work at a client office for 8 hrs, then do several more hours after I got back to my own office. I did fall asleep a half hour earlier than "normal" but I can easily live with this. I am quite encouraged.
I have sent out all my positive wishes to the women of this thread who are getting scans this week. It seems to me that we all share the fervent wish that this drug will help all of us reach stable, if not NED.
Putting one foot ahead of the other here in MA, *susan*
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Sending out positive energy for all of us getting scans this week. Very stressful time but its great to hear some good news. My good news is that my recent TMs were lower. My onc does put a lot of faith in them for me since they've always been spot on and my scans have always reflected my tumor markers in the 14 years that I've been Stage 1V, but I know that is not the case for everyone.
Kaption I spoke with the pharmacist at CVS Caremark and to someone at Pfizer regarding acid reflux and what medications are okay while on Ibrance. They were very helpful. I was told before taking Ibrance that there could be some issues with absorption of the Ibrance and that's why its best to take as far apart and as infrequently as possible.
Holly I've found that same thing with tea that it sometimes intensifies the problem. And I also love tea. Also pineapple for me is an issue so I've stopped eating it entirely. And the strange thing is coffee is okay.
Have a great day everyone. Its beautiful here today in NYC.
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About the reflux problem... I had that a couple of nights ago (I take my Ibrance right after dinner), and a natural product I keep around called Calmicid by Melaleuca resolved it quickly for me. Prior to Ibrance, the few rare heartburn episodes I've had seemed to be set off by green pepper or coffee, both of which I now avoid at night. So I'm far from an experienced user of these types of products, but the one I mentioned, which you can find on-line, is inexpensive and chewing a few tablets has always helped me instantly. Just a possible natural alternative I thought I'd pass along if your problem isn't serious enough to require a pharmaceutical.
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Thanks for the information Dlb. I always prefer to take natural when I can. Also for me if the problem isn't too intense I have found that plain greek yogurt helps.
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thank you, pear lady!
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I got my PET scan results today after having completed 4 rounds of Ibrance/Letrozole. Just a little background first. . .My initial PET scan in February showed my 6 cm breast tumor (SUV 11.4), plus a second focus on the left breast (no SUV # given on the report).Some lymph nodes showed SUV as high as 4.2 with other tiny nodal metastasis. It showed multiple bone metastases in the thoracic and lumbar vertebra, ilium, & ischium ranging from 6.8 SUV to 9.3 SUV. Today's results are: a complete metabolic response to treatment, including healing to the damage from the bone mets, and no new metastases identified. I can't stop crying. No evidence of disease (but doc still made it clear that these sneaky cancer cells are lurking and we have to pursue them). I will remain on my treatment regimen of Ibrance/Letrozole, Zoladex & Zometa until we have to seek something else. Happy and thanking God for this success, but I know this is a life long battle. Here's to Ibrance and all new treatments in the pipeline! Hoping they give us many,many years!!
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KKs mom Awesome news!!!!!!!
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KKsMom-that's fantastic!
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KKsMom, no wonder you can't stop crying! NED -- that's phenomenal! I'm just about crying reading your news! Hugs, Deanna
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KKsMom so happy for your great news. Hope you will be dancing with NED for many years to come.
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KKsMom, FANTASTIC!!! So happy for you!!! Cry all you want to, these are tears of joy!! Don't forget to celebrate
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KKsMom... That is fantastic news!! I am so happy for you!!! I smiled big for you!!
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KKsMom,,
Wonderful, great news...
Dance with joy,
Tomorrow, I will find out my results.
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So wonderful, KKsMom!!
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Had to stop by to congratulate you, Kksmom. I'm getting a little misty eyed here. We all hope for responses like you are having. Enjoy this! So happy for you
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WaHoooo that is a great new KKsmom, congratulations I'm very happy for you.
Take care
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KK, This is such great news! We all hope to have this response. *susan*
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KKsMom! Woohoo! That's fantastic! Makes my day.
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KKsMom
Such great news!!!! Do a happy dance!!!!!!
Hoping everyone getting scans this week gets similar results!!!!
Babs
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KK's Mom - great news, congrats!!! I wondered whether you had success with the letrozole by itself also, or did you switch to the Ibrance/letrozole after the letrozole alone failed? Did you start the Zolodex at the same time as the Ibrance/letrozole? Great to hear of your success, and let's hope for more stories like yours.
Romansma, I think of you often and hope you are doing well on your new drug.
Everyone, good luck with your scans, and try to keep your mind off them even though it's hard to do. I try to keep my mind occupied with anything but scans and hospitals - this does help me a lot in dealing with scan anxiety, though I still dread having the scans.
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Wow, KKsmom that is really terrific news, congratulations on your wonderful scans!
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I am glad to jump in here as I will be starting the hemera/ibrance combo in a few days. Will keep everyone posted on side effects. I can put up with a lot if it helps shrink the tumors or holds things at bay.
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Artist, I have found this combination very tolerable. Fatigue is my biggest issue but I just try to push through it. Some stiffness and aches in my hands from the Femara, no serious side effects at all! Hoping the same for you
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I agree. This combo is very tolerable. I am usually a very high energy person. Some letdown with energy at the end of the day, but really not terrible. I also am experiencing stiffness from the Femara. The same I had when I was taking Femara for almost five years previously.
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pear lady, me too! I immediately recognized those familiar pains! Easy to distinguish from bone mets pain
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Absolutely. Not really pain, but stiffness But for me Arimidex was so much worse.
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Hey 3Holly, to answer your question about when I started the meds. . . I received my initial breast cancer diagnosis one week and then when my scans came back we added bone mets to the mix. I started the letrozole/zometa/zoladex around the same time and then added the Ibrance about 10 days later, if I remember correctly. I'm 45 and had a partial hysterectomy in 2005, which of course allowed me to keep my ovaries (Hindsight I wish they would have taken these estrogen producing jokers,too!), so I was borderline menopausal (numbers met the definition but without "evidence" that a uterus can provide). I think they wanted the zoladex in my system just to be on the safe side before I started the Ibrance. My PET scan on Monday was the first scan to measure treatment effectiveness since diagnosis. Hope this answers your question.
Good luck to all. Praying for good news or new plans for everyone.
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Hello everyone,
My first assessment results came back and I would call it mixed. There is possibly some progression in the pleura (ct scan), however, no mets to any organ or bone.
My TM's , there are 3, one is normal, one is slightly elevated and one high.
At present I'm not considered stable but it's only been 3 months since DX, and I'm feeling great and will be leaving on a lengthy trip out of the country. My onc had no problem with the trip as long as I have blood test every 2 weeks, so now I can send pics of medical clinics along with the usual stuff. I can be assured my kids will find them fascinating.
I will continue on this protocol and scan again in NOV.
I have a question out of curiosity on TM's. My TM's are CA15-3, CA125 and CEA.
When someone mentions the markers I'm not sure which ones they are referring to or is it a different TM. Are these markers common or are there many ofthem?
Kathy
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Max,
I get two markers done... the CEA [which has not been that useful for me] and the CA27.29 [which has been eerily accurate.] One time someone ran the CA125 by mistake.
Hope that helps.... Enjoy your travels!!!
*susan*
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I only get the CA 27/29 and it has also been very accurate for me. I believe this test is specific to breast cancer only
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My onc only uses CA 27-29 for me. It has been very accurate, corresponding to scans and exams.
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I get a CA27-29 monthly, which has always been incredibly accurate for me. If my TMs are on the rise, as they have been recently, I also get a CEA as sort of a cross-check.
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I get CA27/29 and CEA. They have always been extremely accurate for me which is why I don't scan as often as some do. My onc also does something called Circulating Tumor Cells (CTC) which not too many Drs. do. My onc says he uses it as a cross check.
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Susan, the CA125 is the only one that works for me, it is not only for ovarian cancer, it detects breast cancer as well. The CEA and CA15-3 are well within the normal range for me.
Pearlady, that is great that your onc does circulating tumor cells as well.
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Sorry you didn't get unqualified good news, Kathy, but I guess it's better than unequivocal bad news, right? Have a wonderful vacation!
Like a lot of us, my onc runs the CA27/29 and it seems to be pretty accurate for me.
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Susan, Lynwood, ShetlandPony, dlb823, Annie and Pearlady,
Thanks for responding and Pearlady, I am going to ask my onc about CTC. I don't know if she will be receptive, but I can ask.
Something my onc said which I found interesting was that I had a indolent Cancer, evidenced my by 20 plus years of BC and its type. She also remarked that this is true for many of us.
She is affiliated with a teaching hospital and has published and trained future onc's so I assume she is correct.
At least I won't be leaving the planet in the near future.
😊😍😊
Kathy
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Now that is good news about the indolent! Hope you get many, many years off of your cancer's laziness!
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KK- Great News! I am very happy for you.
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KK'sMom - thanks for that info, I looked up Zolidex and it sounds similar to Tamoxifen which I was on for 5 years. I wonder if they are adding Ibrance to Tamoxifen as well now. Hope you continue to have great results!
Interesting that my oncologists don't put much faith in TM's since it sounds like many of you have had accurate TM's. I guess my scan at end of Aug will tell me for sure whether the decreasing TM's were misleading or not.
Thanks, everyone, for sharing that reflex/heartburn info, Ibrance definitely aggravates it, but it's manageable. Sometimes I notice that my bra shrinks in the wash, and the tightness makes the heartburn much worse, believe it or not, so watch the restrictive clothing. Miss the tea, but luckily I am still able to have my morning coffee (though I always make sure I have toast first so that I don't have it on an empty stomach).
Going to the Red Sox, and then the Cape for a couple of days, looking forward to a couple of relaxing days at the beach with my family and friends. Stay well, everyone, and have a great weekend!
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Hi ladies! I have not posted in a long time. I was originally diagnosed stage II in August 2013, had double mx, 4 rounds of TC and 35 radiation treatments. I thought I had kicked this crap, but was diagnosed stage IV with mets in spine, pelvis and liver on July 23, 2015. I started Lupron a week later, along with Xgeva. I then started letrazole a week after that, and started Ibrance this past Saturday. So far so good. Also started radiation on August 10, only radiation to L2 vertebrae that is causing pain. Pearlady, you are my new hero, 14 years is SO exciting to me, since I am 36 and have a 3 year old son! My question is regarding work. My MO said she is ok with work, but not ok with stress. I have the option to go back to work 4 days a week, but my job is stressful. I am concerned that the stress of my job will allow this cancer to progress. Pear lady and others who work, do you have low stress jobs? Do you do something specific to manage stress? I want to live to see my son grow up way more than anything else
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congratulations kksmom, I started my insurance and letrozole tonight. I have had lots of stiffness and joint pain with the Andrade. Marilyn
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that was supposed to be ibrance and letrozole, auto spell check I hate it.
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SouthernBelle, I also work full time at a demanding, high pressure job. I was diagnosed at stage 4 at 38. I have learned to make adjustments. I try not to let things get to me, work hard but don't ruminate over conversations/interactions/responses like I used to. I also try to get enough sleep, exercise 3 times a week, eat healthy, do deep breathing exercises, prayer and yoga to minimize stress. I also make it a point to take mini breaks at work - to take a walk around the floor or go run errands at lunch sometimes to get away from my desk. It is all easier said than done and I have set backs, but I feel much better leading my "normal" life while I still can. Also, between my demanding job and 7 month old baby, I often forget for chunks of time throughout the day that I have stage 4 cancer. It is a positive mental break to focus on something else, which I find therapeutic.
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Has anyone asked their oncologist about flu shots? I typically get one every year, but I wonder with the low white counts we are all experiencing from Ibrance if that's even possible? I will ask my MO at my next appointment, but wanted to know if any of you has any info to share on this?
Southern Belle, I worked with my HR partner at work and MO on a plan for intermittent FMLA (most importantly for job protection), so I can be out when I need to. You may already know this, but if not, you need to do this. You can also ask for accomodations under ADA. I did this as well. Examples of accomodations I asked for - work from home options when needed (fortunately only used a few days in the beginning of treatment); moved my office closer to the elevators & to the bathrooms. I am all about trying to make this as easy as possible and stress free as possible. I have regular conversations with my boss (he's great) and my HR partner re: work load and other things that can cause stress, and how we can manage it as a team. Exercise helps, too. That's something I've got to get better at! Good luck to you!
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Has anyone else had problems with feeling faint? I'm at the end of my third round of Ibrance. I know my sodium is a little low. Anyone else?
Thanks! -
SouthernBelle I agree with what JFL has said. I also have a stressful job. Sometimes in the mid-afternoon if I get tired, I find that if I go outside and walk around the block or sit outside for a few minutes, it allows me time to de-stress. And a bit of fruit and a cup of coffee seems to do wonders. I meditate nightly which has helped with getting rid of stress and also helps me to sleep better. Someone once told me that we all have stress, but its how we handle it and knowing how to let go of it that is key. When I was diagnosed with Stage 1V I never thought I'd be able to be here 14 years later. With all of the new treatments and the promise of more, I'm hoping that we all have options for many years to come. I also believe that the multitude of supplements that I take have helped me to manage this much better.
KKs mom interesting question. I am going to ask my onc about it. I used to get every year and for the last few years haven't gotten, but I do take a lot of immune boosting supplements which I think has helped protect me.
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Thank you I am a teacher and hoping to return for at least part of this year ... Beginning in Sept... Starting 100 dosage tomorrow! 8/15/15 do u think it is possible ??
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Yes i actually did faint, brush burned my head .. Now beginning lower dose
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You are a superhero in my eyes! God bless you ! I hope I can be like you when I begin Ibrance tomorrow!
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So encouraging ... Thank you. Do the side effects get less as time goes in?
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I'm curious why you are on 75 rather than 100
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About flu shots... I had asked my onc about a shingles shot after one of my friends recently got shingles and was urging all of her friends to get the vaccine. I was told it probably wouldn't be a bad idea, but that a flu shot and a pneumonia shot later in the year should definitely be considered, but any vaccines must done when counts are highest. I have always been anti-vaccines, but remembering how sick I was when I was re-dx'd and how painful it was to breath or cough with rib mets, I will probably bite the bullet and get the flu shot and maybe pneumonia too.
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What supplements do u take?
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Congrats and thank you for your encouraging words
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Piemaker I take numerous supplements as recommended by my Onc and by my holistic pharmacist. Some of them have helped to keep my counts high. If you check earlier in the thread you will see details. If you want additional details you can PM me.
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Question..
Has anyone had blood draws outside the U.S. ? I'm traveling for five weeks and will need 2 blood draws. I'm encountering some difficulty but think it's solvable.
Please PM me.
Thanks,
Kathy
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Doo probiotics or fiber help with the diarrhea. Marilyn
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Tumor markers 80 on July 21st, 64 on Tuesday. Started at 203 in April before Ibrance. Bring on cycle 5!!
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Lynnwood1960 - great news! I am happy to hear about such a drop in your tumor markers. Mine have doubled during my first cycle on ibrance/femara to over 200, but I'm hoping that they will begin to drop as I go along. I love hearing good news like yours, makes me more hopeful.
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Hummingbird, they must be seeing the rise in tumor markers in the beginning of treatment because they told me to not be upset if it happened. They said many times you will see an increase first and then a decrease. In my case, I had no increase
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way to go Lynnwood
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Thanks for letting me know that Lynnwood. I feel better hearing that. That's what I am going to think is happening.
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My TMs have been in normal range since taxol, but this week for the first time they are down to my 2011 baseline! (5 Ibrance cycles))
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Lynwood
That's really great!!!!
Babs
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ShetlandPony, that is such fantastic news about your TMs! A lot of positive results coming in from Ibrance!! I love hearing this.
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I just received my bottle today and I am full of anxiety and fear😔but reading positive results encourages me ... I CAN DO THIS AND I WILL DO THIS AND I WILL DO THIS WELL. I will return to work in Sept as a teacher and I will be as positive as I possibly can ... As soon as I stop crying! I will begin after dinner tonight on a full stomach! Thank you everyone for posting good things honestly 😀
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one of my greatest fears too I know it seems not important, until you are the one without hair, right? I love having hair too❤️Hope I can keep mine also
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can you drink wine on Ibrance????
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Piemaker2, Yes - that's the attitude!!! I also was a teacher - until January, when I went out on disability retirement. I just want to mention that there is a good possibility that your blood counts will drop with this treatment, so you may want to be extra careful to protect yourself agains all the germs in the school building. But I also want to say that in my 2 years of 4 different treatments so far, this Ibrance/femara combo is BY FAR the easiest. Wishing you good luck, and try not to worry.
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aww thank you so much !!! Good luck to you also. Praying for everyone!!
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Lynnwood, that's terrific! Happy for your great news!
I got my CT Scan results yesterday and, like Kathy, they were mostly good but a little mixed. I had some small growth in my liver, but my onc feels since it's small and I've been on and off of Ibrance trying to get my white blood cells where they need to be, it's worth giving it a little longer now that the cells are where they need to be.
Interesting, my onc now thinks that when Ibrance does give out, the next step will most likely be everolimus/exemestane instead of a straight shot to Xeloda. But hopefully the Ibrance/letrozole will start making a difference and go for a while before then.
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Pie, do not be afraid of Ibrance, it's really not bad! I have only had some fatigue. My hair is still the same after 4 cycles. My white count is low, not quite in normal range but I am a nurse and planning on going back to work in October. My onc has no problem with me working around a lot of sick people as long as I use common sense and universal precautions. I have strict instructions to call her immediately if my temp goes above 100. The bills don't stop when you get Cancer and I am not in a financial position to stop working, especially when my health insurance is so important right now.Roses, hopefully Ibrance will knock out that small growth on your liver! Since you have been on and off because of your counts,it might not have fully kicked in yet
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Shetland- great news!!!!!
Roses- I'm hoping the next set of scans for you show. marked improvement!!!! My last scans were also iffy and my mo thinks the next set will be better- fingers crossed for all of us!!!!
Babs
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Oh my goodness... thank you so much! You are so sweet to tell me that. I will begin tonight and I will work again! Stay strong!
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I got my tumor marker test results Friday and they are stable after only one month of Ibrance. Hoping it stays that way for a long time. My WBCs are only at 4 and my neutrophils are low too, so I hope since this is my off week they come up so I can continue at 125mg.
So glad to hear others are having good results as well.
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Allison
Congrats on being stable!!! That's wonderful
Babs
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Allison, great to hear, and it is early, so the TM's may start dropping. Your blood counts should come up, mine always have fairly quickly (at least they've come up enough for taking the Ibrance again). Good luck!
Shetland - great news!
Marilyn, I am surprised if the Ibrance is causing diarrhea, that is the first I've heard of it, could it be another med? Anyway, I hope your once has told you to take Immodium - my friend had an intestinal cancer that almost killed her but is doing great now - she had to take about 12 of them a day - she swears by Immodium, and had no negative side effects even though she took more than recommended dose (her doc said it was OK).
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FYI Every time I start my Ibrance cycle again, the first week I have BM issues but then it passes-thank god!!!
Babs
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Diarrhea is a listed SE of Ibrance -- 21% for those on Ibrance+Letrozole vs. 10% if on Letrozole alone. I got hit with it around my 4th or 5th day, after eating some cottage cheese. The patient insert (pg. 7) suggests limiting raw veggies, dairy and spicy foods. http://www.ibrance.com/sites/default/themes/palbo/...(palbociclib)%20Patient%20Brochure.pdf
Here's another link with some tips if this happens to you. http://www.oncolink.org/treatment/article.cfm?c=14...
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And of course there is the BRAT diet: Bananas, rice, applesauce, toast. I often use it the first couple days of a new Ibrance cycle.
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thank you, very encouraging!
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Thank you! It helps so much to speak with all of you! Day 2 cycle 1 done
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only had the girls issues the first night and I had eaten pizza, now just a nagging headache but otherwise doing great. Sounds like this is a great bunch of women , glad for all the information, thanks Marilyn
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Shetland Pony great news!
I have intermitent diarrhea in the morning only. Nothing terrible and I'm usually okay the remainder of the day. I do take immodium sometimes which is very effective.
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I have not had any issues with diarrhea but now I know why my onc questions me about it every visit and appears surprised when I tell her no issues
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Hi ladies - I don't post much but I stalk this board regularly
You all are so helpful in this crazy land of Ibrance. I started Ibrance/Femara in May. Took 125mg of Ibrance from May 23 until July 28 when it was suspended for low counts. Just started 100 mg today. Had scans done in May prior to start of the combo, then another set done last week. Doc said scans are stable, and a little bit better than they were in May as some spots in bones and lungs have decreased. Just wanted to share some positive Ibrance news. Keeping you all in my prayers! -
Great news Zimmerwoman!
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Ladies,
The nurse called me and said my WBC dropped to 2.2. What does this mean? I need to get the labs redrawn on Thursday to see where they are at for a dose reduction or to stop the meds. I don't want to stop! Any natural way to bring this back up?
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Great news on the scans Zimmerwoman!
Babs
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This is my first post on this thread. I started Ibrance/ femara on July 25th. I took my last one of this cycle 2 days ago
My WBC went from 8 to 4. My onc is keeping me on 125 mg for now.
I have had exhaustion, but nothing else to bad. I've had diarrhea three times in the whole course and it didn't last long.
Myra1211- I started Cymbalta a little bit before the Ibrance. I tried it mostly because of severe nerve pain in my primary tumor.
It's been amazing! My tumor pain is almost gone ( I get twinges now and then) and my outlook is much better. I was getting pretty dark moods.
So far I'm ok with all of it.
I'm amazed at all the women still working full time! I had a very physical job and simply can't do it. You guys are incredible.
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Good morning all. I have been MIA for the last weeks. I have been blessed with my first grandchild. A beautiful little girl named Mallory. I will post pictures at the end.
Sorry I have not acknowledged all the newbies here. Welcome and I hope you have great success with Ibrance.
Congratulations Lynnwood for your great results. Roses and 3Holly congratulations for the most part to you both. My TMs continue to rise, so may be my last cycle even though scans were good. Don't want to think about that now.
Kudra, thx for the cymbalta encouragement. Not sure it is working yet.
My biggest problem with this med is anemia. Very dizzy and fatigued. Have to wait like 30seconds before walking when getting up.
Anyway, here are a couple of photos of my Mallory. Can't believe my baby has a baby now!!
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CONGRATULATIONS, Myra! Mallory is Beautiful!!
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Myra, congratulations on your BEAUTIFUL new granddaughter!! I hear there is no greater love then to see your child have a child. I can only pray that I will see a grandchild one day. Enjoy this special time
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I have been taking Ibrance for four months. Can't tolerate Femera because pain is overwhelming. Also have Falsodex shots monthly and Xgeva shot monthly. My numbers keep getting higher. I'm at an all time high of 535 on CA-15. Two years ago it was 50 and under. Get a pet scan next week. I feel great besides fatigue. I sleep ALL THE TIME! Anyone else sleep alot? Looks like if it keeps rising Ibrance will be no more. Wonder what my next step is? Anyway that's really on side effect. Praying for u all. Pray it starts working for me.
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hi. I've lurked since this thread started since Ibrance was looking so promising. Thanks hope for starting it. Femara failed me after 2 years so I started Falsodex shots yesterday and Ibrance tomorrow. W
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Patty, glad to see you join our group! Lots of great information and support here! Good luck with your new treatment! Ibrance has been easily tolerated by me , just some fatigue.
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Congrats on your new grandchild! I have six - 5 girls and our first boy-3months old! No greater joy at this stage of my life. I have only been on Ibrance for 3 days now, 100mg and I am also very faint and dizzy if I get up fast. I hope this goes away as i am planning on returning to work in 2 weeks. Also having morning runs (I take my pill after dinner). Enjoy your new baby !
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Oh, Myra, I am SO happy for you. One of my greatest wishes is to live to see my grandchildren. I share in your joy! She is so beautiful.
Like others, I sometimes don't keep up with this thread, but I want to say welcome to all the newbies. And an extra hug for the former lurkers, cuz I lurked on BCO for a long time myself.
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Welcome Patty! Waiting to see based on this Thursday's bloodwork if I need my dosage of Ibrance lowered or stopped for a bit. My WBC are 2.2. Sounds low but I don't really know anything about this. I don't want to stop yet as I already blew threw Tamoxifen and Arimidex so quickly.
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Hello from Alaska. I started on Palbociclib/Letrazole treatment two weeks & 1 day ago. I realize after reading your posts that those of you who were in the clinical trial paved the way for the FDA to approve this combo therapy for me. If I understood the booklet & my ONC, the Letrazole shots are supposed to increase the effectiveness of the pills, and double my life expectancy from 11 months to 20.5 months. So, a big thank you to each of you! I still have more chemo available as a option but I'm saving that until the last round of tx.
Headache, and mild nausea is the main s/e I have experienced. I am so relieved! I tried 2 (Arimidex & Exemestane) Aromatase inhibitors in the last 6 months & both caused horrific carpel tunnel syndrome, where my arms were dead & painful nerve spasms day & night. So this combo med seems so much better so far. My ANC did drop to 1.22 at 2 week labs, yesterday. I also get dunoximab shots 1x monthly for bone repair, for my bone mets. I have not had hair thinning or loss...yeah! My hair is the longest it has been since I lost it 4 times in the last two years.
So I will follow this thread. I do have a personal question to ask. Does anyone know if my husband is supposed to wear a condom during intercourse while I'm on this? That was the ONC recommendation while I was on chemo, but idk about this while on hormone blocker. I'm 42 & only married 4.5 years to the most wonderful man & I don't want to give up trying to maintain a sex life. Not that I have much libido after HT, chemo & oophrectomy.
wish there was a pill for women for that!Thank you!
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Congratulations Myra! She's beautiful.
You mentioned being dizzy or faint. I'm on my week off of my third round and have had a lot of issues with feeling faint (not dizzy) the past two weeks, often when I stand up and sometimes when I'm already up and walking. I've had low sodium counts the last month and wonder if that is the cause. Anyone else?
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In response to the white blood count questions...I'm at the end of my 3rd cycle at 125 dosage. My WBC was at 5.0 before Ibrance, dropped to 2.2 after 6 weeks, but I've come back to 3.1. My ANCwent to a low of 1.0, but hascome back to 1.8.
Of course, I'm the one complaining about feeling faint.
Thanks to all who have shared info on this site. It has been very helpful.
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Hi Ibrance ladies,
I started Ibrance and Femara 3 months ago. Took a while for my tumor markers to go down, but after about 6 or 7 weeks, they did! Down about 40 points! But then, in the next month, they went up about 30 points. We did a scan and we saw slight progression in my liver mets. Mets that were 6mm are now 8mm and 8mm is now 1cm. Plus a new spot in liver. Right now, that's all we see.
My doctor thinks this combo isn't working. I tend to agree, but we both hope we are wrong. I'm awaiting tumor marker results from yesterday's blood draw. If they go down, I'll be thrilled and we will stay the course and see what happens.
If TM go up, our plan is most likely IV chemo, Doxil. Even though this is a RELATIVELY mild chemo…and I mean relative to some of the awful ones, I still dread going on IV chemo again. It has been 13 years since I had ACT for my Stage II cancer. In the 4 years since Stage IV diagnosis, it's been oral meds. And I know the port is the way to go, still not looking forward to that, either. I never liked my port before.
I am so happy this combo works for so many of us! Hoping and praying for the slight chance that it is just working slowly in me! But, if it is not, I will have to move on.
Anyone else have Ibrance and Femara fail….anyone on Doxil?
Thanks,
Julie
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Congratulations Myra-nothing better than being a grandma!
Babs
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I just started ibrance a little over a week ago. So far I've had major canker sores and have to take an antibiotic to help get rid of them
I've had Stage 4 for almost 3 years and it gets a little more frightening each time the cancer returns.
I've started a non profit just for all of us with Stage 4 Metastactic Breast Cancer called Purple Power.
www.purple-power.org. For awareness and research for us all. Have a great board and at this time donations will go to the City of Hope.
It's great to have this forum and to learn from others and to know your out there for support .
Thank you
Janis
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Hi Julie,
I had very similar results as you did, although my liver tumors grew a bit more than yours. My onc put me on Xeloda, which, so far has been tolerable. I just finished my first cycle, which is 21 days, so I probably need a few more before we do scans. I have no idea if it's working. If not, I think my onc will do a liver biopsy. A Her+ result would add some options.
I see that you have already tried Xeloda, so I can see why going to infusions will be your best bet if Ibrance fails. I certainly hope that your tumor markers drop and that the drug is working for you. Good luck!
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I don't think that is too bad. I was at 1.4 and able to continue with a dose reduction. So, barring any unexpected hitches, I will be able to continue round 3 at 100mg. I didn't have mouth sores this time and other than some fatigue at the end, this has been really easy! I started out at stage 4, so I have no experience with any other treatments to compare
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aka Shelley, I've never been told my husband should wear a condom, on this combo or any other chemo I have been on. Maybe he doesn't want you to get pregnant?
Sandilee, I may be right behind you. Xeloda is my next step. TMs going up, luckily no progression on scan so it bought me a couple of more months in Ibranceland . If TMs keep moving in the wrong direction, I'll come find you on the Xeloda thread.
Myra, beautiful baby!
Welcome Patty. I see you on the Bone mets thread, where I lurk. That thread moves so fast I can't keep up, so I haven't jumped in yet. I reallyhope this combo works for you.
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My goodness, look at all the great news! Myra, Mallory is an angel! And Zimmerwoman, great news on the scans! And all out newbies, wishing you much success on this combo!
As for the WBC questions, my understanding is it's the ANC (Granulocytes or Neutrophils) that they use to decide whether to take a break or lower the dose--WBC is related, but not exactly the same. My onc told me an ANC lower than 1.0 was the cutoff and I think below 0.5 was the hospitalization point. I was hovering around 0.8 for a while and as low as 0.6, but I seem to do better on the 75mg pills, so that's good
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so today is the day my Ibrance comes in. Mo nurse said start it today since I just had labs Monday when I started Falsodex. Mo said will do labs weekly for awhile. He said I will e his 4th patient using Ibrance. The other 3 were last ditch efforts when everything else has stopped. He said they didn't have the time to let it start working. So I'll be his 1st after the first progression. He was in excited but very concerned about low counts. Several of his colleagues in the same clinic are using this and seeing some success and some failure. Either way Falsodex would have been next step. I am both excited hoping that it will help stop the cancer progressing and scared that we don't know much about side effects yet. I do find comfort in readings everyone's experiences here. Thanks for sharing.
Glad to see so many people I already know here and happy to meet others.
Stefajoy - Hi there. Jump in on the bone mets thread anytime. YEs it moves fast but once you jump in and get to know people its pretty easy to keep up. Lots of good information and support.
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I haven't been on this thread much lately, so haven't been able to keep up with everything. Welcome to all the newbies in Ibranceland and hoping that you all achieve regression with minimal side effects. For me it has been a fairly easy combo to tolerate. The supplements that I take have really helped to manage the low blood counts. I have also been taking some which help with the joint stiffnes from the Femara. I would encourage the newbies to read the posts from several months ago regarding the supplements to help with the low blood counts that both Myra and I have posted.
Patty glad to see you here. And so happy that you have recovered from your time in the hospital. Praying for you to get good results. My onc has one patient who was very advavanced also and coulldn't tolerate the side effects of Ibrance. He seems to feel that if the bone mets have greatly impacted the bone marrow that it is more difficult for your counts to rebound. Not sure about that, but it makes sense. She was also not able to tolerate the Ibrance as your oncs patients could not.
Myra, Mallory is beautiful. Congratulations. What a joy. Praying for you to have lower TMs also.
Julie I see that you've been on most of the oral chemos, so I suppose that the IV chemos are next. Have not had Doxil, but did have high dose ACT when diagnosed in 1997. I've had Abraxane which was NOT difficult other than hair loss. My onc says you can give that again after a year, so that is still an option for the future. In my situation, since I've not had Faslodex, my onc plans on giving Faslodex/Ibrance when the Faslodex/Femara stops working. Would that be an option for you?
So far so good for me in Ibranceland. I actually had a small rise in my TMs initially but then they have come down to slightly below where they were when I first started the combo back in 2/15. For me the TMs have always been very reliable. My onc also does things very diffently than other Drs. and gives the CTC test.
Myra and Stephanie, is your onc planning on switching from Ibrance without scanning again if TMs continue to rise?
Have a great day everyone. Very hot here in NYC today.Dorothy
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Just had my 2nd Faslodex shots today, and I was surprised and my onc seemed concerned that my neutrophils (?) were at 1100 after just 2 weeks on Ibrance. WBC 3.2 vs. 7.1 two weeks ago. RBC and HGB are down too, and other blood readings look messed up. Darn.
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Raine how are you doing? I haven't logged in a couple of weeks. I had to be lowered to 75mg be caused my platelets dropped to a dangerous level.
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Dorthy can you help me with info for the supplements to raise the blood counts?
Suzanna
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Dorothy, we are just going to watch the TMs for the next two months. If they keep going up then it's time to rescan and switch to Xeloda
The scan is primarily a base line for the new treatment.
Stefanie
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Wishing everybody dropping TMs!
Good news: I had my PET-CT and my onc says it is boring.
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oh Sheltand , we should all be so boring! I would love to hear that come out of my oncs mouth. It's so simple and yet so wonderful. Enjoy the boringness of your cancer (yawn). Heehee.
Stefanie
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Shetland, boring is great! I'll take that anytime
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Boring is the best kind of scan. Yay!!!!!
I finished week 2 of cycle 3 last night and am starting to feel the cumulative effects again. However, in the past week, I have done two major software installations, entertained an 18-yr old French cousin, cooked for a family of 5, and reviewed and made an offer on a condo, which then stretched into an unsuccessful negotiation, all while the temperatures in our house were over 90º. Maybe I have earned the right to be a bit tired? No mid-cycle blood work for me this month. I guess the protocol only includes this mid-cycle check for the first two months.
Welcome to all the newbies. I read all of your stories, but have just been too overwhelmed to post much lately.
*susan*
p.s. Congratulations on a grandchild Myra. That is one of my secret wishes; to be here when that first grand might appear.
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Myra, Congratulations, what a beautiful baby girl, there could be no greater joy to lift your spirits !!!
Shetland, excellent news on the scans!
Susan, sounds like you need a vacation. Just got back from a few days on Cape Cod with my family - it was the perfect vacation with perfect weather every day - we all went swimming in the warm ocean water every day (even my 91 year old Dad and 88 year old mom who came to visit for a day) - it was so relaxing, just what we all needed!
Sandilee, so glad you are tolerating Xeloda, and I am praying that you continue to do well on it. I will have to make that difficult decision on a chemo drug soon if my scans at the end of the month show more progression, but I'd love to stay in "Ibranceland" as long as possible.
Welcome to all the newcomers, hope that Ibrance works wonders for you all!
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Wow! You are amazing! So very happy for you and thank you for such encouraging words for us newbies. Cycle 1, day 5, a few mouth sores, bedtime 9 pm!! I babysat my older granddaughter 3 days this week! Took her to my classroom and she was a great help setting up😇 Love hearing all is well for you
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Suzanna the supplements for the blood counts are as follows:
Maitake drops - for both red and white - 6 drops 3 times daily (also helps with energy and is anti-cancer)
Astragalus - 1 2X daily (for white)
Chlor-Oxygen - 1 2x daily with full glass of water - (for red)
Ashwaghanda - 1 2x daily before meals (for platlets)
Shark Liver Oil - 1 gel cap 2x daily after meals (for white)
Also blackstrap molasses with water several times a day for red
Floradix liquid - once daily for iron (I don't take this all the time, only when iron is very low)
Hope this helps. Let me know if any questions.
Dorothy
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No, it's not a pregnancy issue. My husband is fixed, and now I have my ovaries out. I used to be a Oncology RN, and we double glove when handling patients' body fluids because it is carcinogenic & teratogenic. (Harmful on the cellular level, as it is meant to kill cancer cells). So, I asked my doctor about it two years ago, and he said "yes, definitely, wear a condom during chemo". Hormone therapy works differently so I don't know the answer.
Hoping my TM go down. The bigger picture is survivability and I have been battling two years.
Much hope and prayers for each of you warriors.
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Dorothy, thank you for reposting your supplements. Several people have mentioned it to me, and I was just about to look for it.
What about zinc? I'd done some research last night, and that seems to be mentioned on a lot of lists.
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I don't take zinc. Is that suppossed to be helpful with the blood counts? I am going to ask my holistic pharmacist and also try to research it. Although I don't take zinc, I take many other supplements besides the ones I've listed. The ones that I've listed are for the blood counts only. Its expensive, but I feel good and think all of the supplements have helped me to have good QOL and to tolerate the treatments better.
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aka Shelley - come to think about it, I did not (nor did I want to) have anysex with my husband while I was on chemo. Abstinence works too, I guess. HaHa. 😂😂
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I can't imagine dealing with a condom along with all the dryness etc. that menopause and hormonal treatment cause. Anyway, nowhere in the drug info for Ibrance do I see that there is any such safety issue.
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I posted last night on a general page not Ibrance specific. I have been on Faslodex for Almost three months. I am nervous about the side effects . My Onc has asked me to cxl a planned trip to Hawaii due to the low blood count etc... Ugh! I have heard from another woman that she's been on it for two weeks, "so far so good" other than diarrhea .... Any other experiences. Just starting this and hoping its s match👍🏼❤️
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Shetland, wonderful news! Love to hear that.
Just got results from today's labs. I'm a week into my second Ibrance cycle on 125 mg. dose and my counts are all very low, but holding steady - some up a tiny bit! I'm thrilled! Looks like I will stay with the 125 mg. at least for this cycle.
Good Luck to everyone. Have a great weekend.
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AnneMorris, how low is low? I'm on my fourth cycle of Ibrance and just last month went on an amazing trip to Hawaii. My counts were at about 2. I still went. My Onc said I didn't need to do anything more than the usual diligence of hand washing and staying away from sick looking/sounding people.
Stefanie
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Hi Annie, I agree with Stefajoy to be diligent about washing hands but unless your onc can give you a specific reason to cancel your trip I would say go, people do travel on these meds and a holiday can be a wonderful way to forget about being stage IV .
I'm leaving in a few days for 5 weeks traveling extensively in Europe and will have to have a blood test every two weeks to check my WBC. If they drop too low my onc has already told me what to do next. Nowhere did she ever mentioned I should cancel or shortened our trip. We do have travel ins and backup plans if we needed to return home early but I don't think that will happen. At first I was nervous about the distance and length of time, now I'm looking forward with joy to this adventure.
Hawaii is lovely, hope you go.
Hugs,
Kathy
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Annie, I recently traveled to Europe and have plans to go to Mexico soon. My doc had me check blood counts the day I left for Europe and mentioned he might need to have me do labs there if my counts were too low, although that didn't happen.
It seems extreme to cancel your trip. Hawaii is SO relaxing. That has to do wonders for your immune system.
Hope your counts recover soon
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Hello all,
I'm not sure if I can post here, but I did just started my palbo trial (safety trial, so everyone on gets drug) yesterday. I am being treated at UCSF. Been reading some early pages to start and see what I may be in for. I appreciate everyone posting about SEs. Feeling tired as usual, up at 4:45am w my 7.5 month old twins. I was pregnant with them during chemo, they went through four AC rounds and 4 weekly taxols before delivery. They are doing fine, except I wish they would sleep longer! They are my second set of twins, my first are almost 3.5. I want to stay around for them as long as possible. Good luck to all here
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I just received my Ibrance today, 8-15-2015. The doctor has not told me when to start yet. I am a little scared cause I couldn't tolerate regular chemo. that was used to treat my breast cancer in 2013. The cancer has come back and it is Metastic breast cancer in my spine. T3 - T6. I would appreciate suggestions to help me get through this. Thank yo
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Gato and Sally, Welcome!!!!!
Gato, wow. Two sets of twins... my brother and sister in law did that and it was not an easy task. They were very lucky to have supportive grandparents down the street. Grab some sleep wherever and whenever you can. Any chance you can hire a neighborhood teenager to come in two hours after school to allow you a bit of time to put up your feet? And, if we were taking a vote, you are in on this thread. This is such a new drug, that if you had to wait until others at your Stage are also on this drug just doesn't seem right.
Sally, the good news is Ibrance is not a chemo; it is a targeted therapy and much easier for most people to handle than a chemo. Are you getting Femara or Faslodex with the Ibrance? What hormonals have you done at this point? From my perspective [though today was a bit rough,] my first cycle was the hardest, the second one was a bit easier, and now round 3 is even better. As we get to know you, we will be able to help you navigate this new [and very scary] world.
Be well.
*susan*
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Popping in to agree with Susan on all counts!
Sallykay, I don't think you can really know how it will go based on how you did with a different drug, but Ibrance's side effects are much easier than early stage chemo. I wish you much success with it!
And Gatomal, wow, you are one busy lady! I agree with Susan, welcome! Someone else on this thread who's been here from the start (Holly I think? I can't remember but hopefully she'll pipe up) is also earlier stage and was in Ibrance for a clinical trial.
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Thank you Lynnwood, I started Letrozole 10 days ago and so far no SE's to speak of. Start the Ibrance Monday and worry a little about WBC's as I work at an elementary school and NEED to work. But whatever it takes. I love all you ladies who have helped me tremendously. Best wishes on those scans!
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Welcome Gato - I am the other early stager on Palbo. On this thread. I am probably in a similar trial as you... Phase 2 safety trial originated At Dana Farber. I am now being seen at my local Mass General facility.
I am just about to start cycle 8 and except for a few minor bumps in the road I have done well. I had my dose lowered to 100 mg around cycle 4 because of extreme fatigue and that made it very manageable. I am supposed to be on this for 2 years. You as well?
Good luck with those babies!
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good morning ladies and all you newbies. Sorry I am not addressing you all by name. I have been basically out of touch the last 10 days. I have been reading as much as I could. I just started my 6th cycle and so far my TMs refuse to come down though my scans were very good. I am sure I will be rescanned before the next cycle.
My main problem is my RBC. it is making me very anemic to the point of extreme weakness when starting to walk. The scary part is I never know when it is going to happen. I have to stop about 60 seconds and compose myself. It has to be the Ibrance because during my off time, it becomes much better.
Gatomal, it breaks my heart when I read about young women with such small children going thru this. There are quite a few young women in Ibranceland on this thread to speak with. S**t, I hate this cancer!!
Best to all today, have a pain free, loving day. Be kind to yourself. Take what you need and don't feel guilty about it.
Sorry I did not address all by name, but I am too far back. Know I give you all hugs.
Myra.
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thank you to all that extended your kind words and well wishes. Lenn13--yes same trial that started at Dana Farber. Eight cycles down already! Good for you. I so wish the dosage diary we have to keep was on my phone, it's such a pain to write down what time I took my drugs. I keep texting myself the time! It's nice to know that future dosage reductions may help, if there are bad SEs. It's the unexpected fatigue and things like that which worry me.
Re: the kiddos, my mother moved I with us to help this past year, both when I was pregnant and while the babies are so young. We've been lucky to have paid help too, I don't know how women do it without a support system. There is just not enough time in the day. Thanks all
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Hello, fellow Ibrancers! I haven't posted here in a while, but the last time I did, I remarked that Blue Cross/ Blue Shield would not cover Ibrance for me because they believed it was experimental in my case. "My case" is that I am 5 years out from diagnosis, not a newly-diagnosed metser. My onc's specialty pharmacy appealed, didn't use the research that applied to older metsers, and got my appeal denied. BC/BS advised me that I could ask my state department of insurance to review my appeal, and they would abide by the state's decision. Because of all this back-and-forth, I went all summer without treatment. With hard-core exercise and very clean eating, I managed to keep my CEA blood marker ( which works well for me, thank heaven) decent. Then at the end of July I vaguely remembered from this thread that someone had appealed to Pfizer. So I got on their website and starting calling any phone number available. No one I initially talked to knew of any program like I was referencing. Then, I called a number having to do with insurance, and that person knew about the program called Pfizer RxPathways. It looked like from the initial survey taken by phone that I was qualified to apply, so I did, only to be denied because they thought my income was too high. The really sweet lady who called me about the denial told me that I could appeal by giving them an itemized list of my monthly expenses. I did that immediately, and voila! I made it into the program! I'll be getting Ibrance through the end of December! I was crying on the phone and the same sweet lady who this time called me with the good news, teared up, too. This whole process took most of the summer and I came "this close" to IV chemo treatment. I teach high school and my daughter is a senior this year at my school. I wanted as normal a year as possible for her, one where she would not to have to deal with a mom with heavens-knows-what side effects, who would also lose her hair.
I started Ibrance a little over two weeks ago. On Friday, the 21st, I had a blood panel done as well as my CEA. My neutrophils have gone from 3300 to 1100--not low enough to stop the med for the last week of the cycle, so yay! But here comes the really good news that I pray will give you all hope--my CEA dropped from 6.1 to 5.9 in that two weeks' time! My onc was so thrilled that he shook my hand AND gave me a hug! The swelling under my arm is shrinking as well. The bottom line is keep going! If a 5+ year metser can meet with some success on the Ibrance/ letrozole combo, others can, too! Keep the faith! And God bless Pfizer!
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FaerieQueem such great news. So happy that you were able to get the Ibrance through Pfizer. It really is awful that we have to add additional stress by appealing insurance denials and searching for ways to get approved.
I have been Stage 1V since 2001 and started Ibrance in February. Right now its keeping me stable with very minimal side effects. I wish they would do studies on how these drugs react with those of us who have been Stage 1V for an extended period.
Hope you and your daughter have a great school year.
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Here I sit in treatment room with cold packs on Faslodex shots sites. Since on coumadin they are worried about bleeding in muscle. I have been on Ibrance 100 mg for 11 days and blood work today to low to continue. Netrophils down to 7000 and WBC down to 1.7. So I am off ibrance and temador for a week. Bone mets in entire skeleton system with some bone marrow involvement but still hoped to have enough good to make the WBC . have held off on radition to spine to try and save marrow. Did have radiation to neck and tailbone last year with great relief. Do you think 75 mg ibrance would be easier? So pleased to hear you guys are having such good results.
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Pearlady - from what I have been told.. These early trials with lower stage ER positive BC are mostly to determine how long people will and can stay safely on the drug. Ibrance is part of a group of targeted drugs that BC researchers think will eventually be added to hormone therapy to prevent hormone resistance. We may see patients taking one or two of these drugs ( in lower dosages according to my MO who is connected to the trial) with their hormone therapy.
If Ibrance helps stage four hormone therapy more effective - as the data as shown in the Paloma trials - I would like to think that these early safety trials would benefit you as it might mean if Ibrance is working for you it could be added to whatever hormone therapy you may have to switch too.
It is all part of the "individual treatment" movement as researchers find out more the intricacies of this disease. My hope is that they come up with the tests that show 1: that this drug will benefit someone and 2: that this drug is being effective rather than waiting to see if someone progresses ... Which is so frustrating to me and for all of you is a way of life. I don't mind being a guinea pig if I know that the data from this trial will help all of us
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Hi sending big hugs for all off you.
I keep getting this big bumps that hurt along with the small itchy bumps.
The big bumps go away after few days.
Anyone has the same side effects? I'm wondering what can cause it.
Also is there anyone on ibrance and going through reconstruction at the same time?
Take care
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I have three small itchy bumps at the moment, one of which is oozing a bit. I assumed that these were bug bites, though I always feel it when I am bitten. I will take note and let you know ziz if I get them again. I heal so slowly on this drug that I have no idea how long they will be there.
Can't help with the reconstruction. Wasn't part of my treatment plan, but gosh, given how slowly I am healing from simply scrapes and cuts, I can't really imagine surgery on this drug. but, you know, these folks deal with this kind of thing all the time so they must have some ideas on how your healing might be affected.
*susan*
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thank you
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Hi Susan and Ziz,
I have a bunch of small itchy bumps too. Look like pimples but itch like crazy. Thought they might be bites, but have had them too long now. I also have a hive like rash on my left arm only (lumpectomy side) that comes and goes. Trying not to scratch as that just makes it worse. Just irritating, not too bad.
How often did you get blood work done when you first started Ibrance?
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Welcome! I have only a few mouth sores and tiredness after two weeks. Getting my blood counts checked today, will let you know. On faslodex and 100 mg Ibrance. Most common side effect is the low blood count.
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For the first two cycles, blood work was every two weeks. I have now "graduated" to once a month.
*susan*
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Hi Jobur,
I get my blood work done every week and my WBC is always low but my MO keeps me on ibrance. I have big bump on my left arm ( not the lumpectomy side) that hurts and is swallow, like a hive rush and it comes and goes too.
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Lenn13ka thank you for that information. I was NED on femara previously for almost five years. My onc did tell me that with the Ibrance, since the femara worked so well previously, the hope was that it would work again. So far, so good. He also told me that when it stops working, he would switch to Faslodex/Ibrance. That sounds pretty much in line with what your onc has said.
Also I noted earlier that you were mentioning hair loss after nine cycles. Is the hair loss continuing or has it leveled off? Just wondering. I've been on Ibrance/Femara since the end of February, so I've lost count of the cycles.
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Pearl Lady - the hair loss has leveled off. I just had blood work done and despite having a wild ride in the beginning with WBC, RBC and # Neutrophils .. My counts now are All in the normal range. # neutrophils that hung around 1.0 is now almost 3.0. They consider me stable on the drug now ( as far as tolerating it well) It took about 6-7 cycles and one dose reduction to get to this point. For all of you just starting, it may take a few cycles to get everything worked out.
Each month I do have one funky side effect. This month was mouth sores. I haven't had the bumps yet..but have had nose sores, hair loss, etc... But they all seem to level off in time.
I asked yesterday why the 2 years in this trial. My MO thought they would have made it more but they didn't think they would get people to sign up. She is going to ask the Doc who is running the trial and get back to me.
Welcome to all the newcomers to Ibranceland....
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Len and Ziz, Are you both "early" (not 4) stage gals? Are you on Ibrance alone or in combo with an AI? Interesting if it is being prescribed to stop recurrence as well. Hope it works for us all regardless.
I tried a little generic 1% hydrocortisone cream on my various bumps before bed last night. Kept me from itching & scratcing anyway.
Best wishes for a good night to all in Ibranceland.
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Jobur - Yes I am stage 2 . I am in a phase 2 clinical trial out of Dana Farber with just 160 people enrolled so, it is not really being prescribed per se. But, that is where they are heading for sure. It is only approved for stage 4 right now. I am on tamoxifen but will be switching to Anastrozole in November. This trial is just addressing dosage issues and if people will take and stay on this drug a long time. I have been enrolled since January 2015.
I was glad when Hope started this thread as I didn't have any reference as to what to expect . There was just a few of us in the early days. Now there are so many here! I am so glad iIbrance is working for many of you stage 4 gals.
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Hi everyone... jumping over to this thread by recommendation. I am newly diagnosed with stage IV MBC this past June. I just started my second month of Ibrance... also doing hormone therapy and Zometa. So far, my worst complaint is extreme fatigue and I tend to experience a lot of bone/muscle pain from the zometa when first administered. Takes me several days to bounce back. Still waiting for my first 3 month scan which will be mid-October to see if this treatment plan is working. I am curious about long term side effects from the Ibrance. I only just started so I really have no idea what to expect. So far I seem to be tolerating it with minimal side effects. Looking forward to stalking all of you for information.
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Hi Chattykat, Like you, I am in my second month of Ibrance. For me, this is so much easier than other treatments I went through. Glad to hear you also are having minimal side effects. I hope we all have a very long success with this treatment.
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Jobur;
I was diagnosed with MBC last June and I'm on my 3 circle of ibrance/ letrozole. I have had 2 shots of xgeva.
Side effects are minimal. I can still everything I used to do before the cancer in 2013.
Cheers
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Well, Here I go on the Ibrance/Femera combo tonight. I was Dx Stage IV immediately. My emotions are finally calming down a bit (except those certain little blips that set me off). I have high hopes that this is good to me and everyone else out there who have been soooooo tremendously generous and helpful here. I plan to take advantage of all the supportive programs my facility offers i.e. acupuncture, massage, groups to help me along. I will be follwing this thread to cheer you all on as well as gain education and tips. You ladies are a lifeline...
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Good luck, artistatheart, I think you will find that this is a very tolerable drug. I am on 125 dose for 6 cycles and tolerating it well. If you are an artistatheart, art can be very therapeutic if you can find the time.
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Thanks 3Holly, I am a jewelry and glass artist but haven't felt very inspired since Dx.....Now that I am starting my Tx maybe I will ease my way back into my therapy! I wish you years on this reg!
I was wondering how many of you have an Onc who completely Poo-Poo's any sort of supplements for getting those blood counts up? Or anything else for that matter?
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artistatheart, when asked, my UCLA onc said she does not recommend supplements aimed at increasing my counts. She said that low counts are an expected SE of Ibrance... that they usually rebound quickly... and she wants to see how I do without them. By the way, one reason I initially chose UCLA back in 2008 is that they are big on integrative medicine, so I knew they wouldn't poo-poo my natural tendencies and strong belief in the need for supplements. And that's always how it's been there, including consults with an integrative specialist and recommendations for supplements. UCLA even has a supplement shop in their main medical center. So this was not a case of a clueless doc saying you don't need supplements, which is why I am following her advice.
I realize this is contrary to what some here are doing with much success, and it may just be a matter of wanting an accurate picture of how I react to Ibrance (finishing my first cycle tomorrow -- yay!) without supplements, and she may okay them later. And I'm still taking the basics I've always taken -- C, E, a calcium complex, D3, curcumin, and a few more. I just didn't add anything specifically aimed at helping my counts, which have already taken quite a hit. Deanna
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Lenn13, Thanks for the interesting info on your clinical trial.
Ziz, Sorry to hear you are stage IV too. Glad to hear your se's are minimal and you are feeling good and living life. Hope this combo works for you for a good long while.
Welcome Chattykat and Artist, but sorry you need to be here.
Chatty, were you told to be well hydrated before and after Zometa? I found it made a big difference.
Artist, this stage IV stuff takes some adjustment to say the least! Go for any and all support you find helpful.
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Hi jobur... No, they didn't tell me initially about being properly hydrated, the nurse just told me that I would experience flu like symptoms. What I got on my first treatment of zometa was a night of excruciating muscle/bone pain. I was blind sided... but, went into the second treatment more prepared and things went much better the second time around. June was such a whirlwind of activity and I was so overwhelmed... the road to diagnosis and treatment is brutal. I'm only just now able to clear away some of the fog so I can try to fully understand my treatment, the medications, side effects etc... Glad I've found this support group though... it's been very helpful so far.
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I was also told to hydrate well before ANY treatment and it certainly does help . I had my faslodex shots and zometa and Cycle 1 day 13 ibrance yesterday. So far so good. Low counts, but onc keeping me on, said she wants to give the drug a chance to be effective, being checked again in 2 weeks, which surprised me .. I thought she would check in 1 week! (For newbies I was on 125 mg for 1 week a month earlier but too ill so onc stopped and started me again on 100mg). Thank you pear lady .. You said don't be afraid it's a walk in the park, and so far you are right! "Hope is the thing with feathers...
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PS Onc did say call if fever over 100.4
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my onc did, she said no supplements other than multi vitamin
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LOVE LOVE LOVE hearing this ! Thank you for inspiration!!!!
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My onc has me take calcium with vitamin d twice a day, and tells me to take it 4 times a day on the day I get my Xgeva shot. She also does not want me to take any other supplements. I am to call her if my temp goes over 100, so far it has not at all
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I'm going to ask my onc about taking extra calcium the day before... that makes sense to me. I already take the calcium/vitamin D twice a day. I'm also wondering about this extreme fatigue. Is it the Ibrance? Or, is it the hormone therapy? Or, is it everything coming into my body all at once?? Hard to say... but, I have days when just a short trip to the grocery store knocks me out for the day. Very frustrating. My onc also said to take nothing additional outside the treatment plan without her ok. And I was also told to report any fever over 100.5.
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My onc sent me to an Integrative MD to get my supplements straight and took me off calcium with the Xgeva and D only. Funny how they are all different. I was also told to call if my temp goes over 100, which after 5 rounds luckily it has not
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ChattyKat,
I felt like you do now a year ago. You sure put your finger on it, the road to dx and tx IS brutal! Your mind is struggling with the dx and all the new info while your body is still trying to fight the cancer and get used to the new drugs that are going into it! Try to get as much rest as you need. I used to take an afternoon nap a lot of days. I would tell myself I was just going to lay down for a few minutes and zonk right out for an hour. Fatigue is a big se of both Ibrance and Faslodex, but I think you will find you feel better in a few more months. Hang in there!
Jo
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Ok ladies I'm a little frustrated. I started ibrance 100mg with Fomara the middle of July. After 2 weeks my blood work plummeted. My platelets dropped to 27so I had to lay off 10 days. It brought my markers down to the lowest since May 2014. I started back 2 weeks ago on 75mg. I did blood work yesterday and my platelets are doing good but my TM made a big jump up. One went up 55 points but the other went up 160 points. My BC came back not just in the bone but also the bone marrow. I try not to be discouraged but I seem to go from one drug to another in the last 15 months and nothing seem to keep it at bay for very long. My ONC says this is my last oral medicine. The next step is iv chemo. Was praying it would be much later than sooner.
Does anyone else have there BC cancer go to the marrow and not just the bone? I can't seem to find any info about this and what the difference and prognosis is. Can anyone shed any light?
Thanks Suzanna
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It is interesting how different oncs have different takes on the Ibrance and what you should and should not take with it. I have been on Ibrance since late February. I was advised by my onc that I could take supplements to increase the WBC and RBC. I was unsure so even went as far as contacting Pfizer. It took me a while, but I finally was able to speak with someone who was able to assure me that nothing in their research showed that the supplements I mentioned were contra indicated. I still sometimes wonder, but I've been having success with Ibrance for almost six months. So I would like to think its okay. At the end of the 21 day cycle my WBC and RBC are still low, but not dangerously so. I don't usually take any supplements for the WBC and RBC other than Maitake during my week off and my numbers are always back to normal by the start of the next cycle.
Myra I was advised not take take calcium also. I do take D3 and Selenium.
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Suzanne, since the 100 mg. of Ibrance helped your TMs so much, I'm wondering if they can get you back up to that, now that you're doing well on 75 mg. Maybe 100 was just too much at first, but maybe now that your body is adjusting to it, you can go back up to that and hope it will continue to lower your TMs the way it did initially.
As far as mets to the bone marrow, I have that -- or at least it was found when I needed a hip replacement for a fractured femur in 2014. And while I've read here in casual comments (not research per se) that it can be a bit worse of a prognosis, from my experience, I don't think it makes any difference, as long as you're on a tx that's working for you, it will work on everything. But I've also read that if there is extensive damage to the bone marrow (like when some has a true cancer of the bone marrow, like multiple myeloma or aplastic anemia), it can be harder for blood counts to rebound, so if you have a lot of bone marrow damage, that might be why you had a problem initially, and maybe even a situation where blood building supplements might be helpful, although I'm not a doctor -- just thinking out loud about your situation.
As far as drugs not working, you may want to get ahold of Romansma here. She recently had a new test called the Guardant 360. Not sure if she's gotten the results yet, but it sounds very promising for figuring out best individual drug options!
Editing to add... pearlady, we were writing at the same time. Good to know you spoke directly to someone at Pfizer! And what is the thing about not taking calcium? That's concerning to me, especially since I'm not yet on Xgeva.
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Deanna I think since you are not on Xgeva or Zometa the calcium is probably okay, although I don't know for certain. I am on Zometa and I think his recommendation was since I was on Zometa. Again, this is probably something that is up for discussion.
Also if you don't want to take supplements for the RBC my holistic pharmacist recommended blackstrap molasses mixed with water. Not the tastiest thing, but its said to really help. He also recommended bone marrow broth for the RBC, which is something popular in NYC right now. I've not tried it but I know others who have.
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I understand you recently had blood work done for guardant360. Can you tell me a little about this and why you did it? Have you gotten the res
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Thanks Jobur... it is so much to process at once and I will keep hanging and swinging until the dust settles!
This happened in the midst of my daughters high school graduation and getting her off to college so I definitely have not been resting enough. I mean, I'm a mom... there is no such thing right?? But, now that school has started I am taking time to step down from everything, re-focus, educate myself more and just get my head together. The Dr. gave me a prescription for some lidocaine patches that are helping me tremendously with the aching along my spine and rib cage, two of my most affected areas. It's helping me sleep better. A thought about the calcium thing: My onc told me that calcium levels have to be in a certain range before they can give the zometa. So, I'm guessing if someone is already taking in a lot of calcium through other sources maybe the extra calcium isn't needed. Maybe mine were too low so I need it more than someone else. But, I think I will add this to my list of questions for her at our next visit... it's getting longer by the day!
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Pearlady, who advised you not to take calcium and why?
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It was suggested that I really didn't need to take it with the Zometa. He didn't say absolutely not to. Sorry if I wasn't clear on that. I'm sure if my bloodwork showed that I needed it he would have advised otherwise.
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Just to throw this in the mix, my onc prescribes calcium with Xgeva. This med can really lower your calcium levels to dangerous levels in some people, so a supplement is recommended. The nurses check my calcium level before they administer the shot. They do this for everyone, apparently.
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Same here with me as Sandilee. Calcium level isalways checked as Xgeva pulls the calcium. This was stressed to me. So I take calcium + vit. D.
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Thanks Deanna for that info. I also feel I want to see how the regimen goes before I start jumping into another realm that I am not well versed in. I have a second opinion appt. with UC Davis down Sacramento way soon and will see what they have to say. I just plan to take it slow and gather information everywhere I can and not jump into something well armed. I am just so inspired by you Pearlady doing well with them I think it is something to consider. I will try the blackstrap molasses for sure Pearlady!
Jobur, yes I plan to utilize all the services my center offers for free! Went to the gym today to keep those endorphins buzzing! I just hope I can continue to work straight through as that also helps get my mind off of it.
Good to know Lynnwood and Myra that there has been no temps over 100! I worry about that as I work the front office at an Elementary School////Sunshine I have no insight on your situation but am so sorry about the Meds situation. Thinking of you and hoping they come up with another combo to put off the IV chemo. All: I am on calcium because I have osteopenia and she said the Ibrance in particular can cause further bone loss.
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Sunshine, the TM's on this drug have not always been reliable (my TM's and Myra's were opposite from the scans). Also, I wonder if the drug has had enough time to keep working. I'm praying for you and for everyone to find a drug that is effective and tolerable.
My onc and surgeon were both not big on supplements as long as you eat a healthy diet - except for vit D and fish oil which they do recommend if you don't have fish once or twice a week (they think the wild fish such as salmon with lots of Omega is better than pills). Hard to get wild fresh fish, though. I try to make sure we have tuna at least once a week, and fish when I can. I don't take calcium, but I do take a couple of TUMS at night as needed in addition to Zantac, and TUMS are loaded with calcium.
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Popping in to catch up after not posting for a while. So glad to see so many familiar names. Myra glad you are having such success on the Ibrance and CONGRATULATIONS on your new grandbaby. Such a blessing. 3Holly, Sandilee, Pearlady, JFL, Romansma. I'm following all your stories and all the ups and downs. Sending good vibes to you all and to all the newbies. Hopefully we can all find what works best for us individually whether it includes Ibrance or not.
As for me, I was taken off 125, took a break and just finished my first round at 100. My tumor marker crept back up a bit during the break but I scanned clean. I have ILC so I tend not to trust scans too much. Even when nothing shows something is still bubbling away in there. Luckily, for the time being, it appears to be on simmer. My tumor marker dropped back down a bit two weeks into the 100 dosage so that's a positive.
The issue for me is still the low counts. I do feel some fatigue but not completely wiped out on the 100. I just worry that my counts are so low that other issues with arise... like what happens when you are chronically anemic? How susceptible am I to infection and is it just a matter of time before I get something nasty. I'm walking a thin line but my onc seems to think the benefits of the Ibrance outweigh the risks of my counts being on the lower side. Fingers crossed and on to round #6.
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Kaydee, so great to hear you are doing well. I know what you mean about the worry about low blood counts - Good to be cautious of infections, but I guess we should try not to worry since worry isn't good for anyone. Sounds like the lower dose is working to keep you stable, and hopefully not as tired, so that is great news!
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Kaydee thanks for checking in and letting us know that you are doing well on the 100. Its always a fine balance when dealing with side effects and the drugs, but it seems that the benefits of Ibrance do far outweigh the risks. My onc has not told me to do anything differently with the low counts other than trying to get more rest and not push myself as much as I am likely to do. I find if I am tired from a difficult day at work, I'll just sleep and bit later the next day and get to work an hour later. A few years ago I would never consider that.
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one week down on cycle one. I drove to our home to get everything ready for our arrival next week (moving back after active tx) and to unpack boxes and deal with some mice in our garage. The weather was HOT and with the work and bit if altitude, I was very faint. I also felt very strange and out of it, so a bit concerned it is my counts already. Things are settled now, and I'm back home, so I'll see how it goes this week, and what my labs look like by next week. Back and neck aching from Femara? Or maybe just twin duty. I'm tired and feel so much weaker than a year ago. Just want to rebuild my strength and stamina
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Hi All : I've come to the end of my second cycle. My oncologist is keeping me on the 125mg for now. My counts were low but still in range that he's not concerned. He said that he wants me to stay on 125mg to try to shrink the tumors. I'm feeling pretty good overall. I think the bone pain may be coming from the Femara. I hope that's the case. I get a little weak at times and tired so I just rest. I wont know what my tumor markers are until a few days when it's posted in my chart. My appetite isn't too good, so I'm supplementing with Boost drinks twice a day.I read that ginger and garlic helps to keep your counts up . I'll try that next week.
I hope everyone is having a good response to this drug. Everyone with tests and scans coming up I wish you the best of results.
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Hang in there Gatomal and mscal02. The fatigue, unfortunately, is prevalent in Ibranceland. Sometimes your body will adjust and you'll get some energy back. If it becomes overwhelming some oncs adjust the dose. It takes some time to figure out. Just be kind to yourselves and rest when you need to.
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What seems to work for me, dealing with the fatigue, is to alternate busy days with rest days. Driving (mom's taxi service), running errands, and grocery shopping are particularly tiring, so I try not to do that two days in a row. (I know I am fortunate that I can adapt my schedule.)
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I have decided to break down and hire a part/time housekeeper so I have more time to rest and do the other things I want/need to do. So, part of battling the fatigue is just trying to find a way to eliminate some activities you can do without so you have more time for the other stuff. I can definitely do without the dusting. My husband does the grocery shopping now and he and I are going to put together meals on Sunday so I don't have to do as much cooking during the week. I seem to always have a surge of energy between like 9-2 but then I completely bomb out in the afternoon and evening. I'm on my second cycle, I'm also on the 125 dose... I did not feel any bounce back on my week off at all, I was actually more fatigued. Anyway, blood work on Monday. I get mine checked every two weeks. Any energy tips?? I'm going to look into some energy smoothies or something to see if that helps.
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Chatty,
I have just finished my third cycle and am on my week off. During the past two cycles the week off was the worst for energy for me, but I have to say, my body appears to be adjusting. This cycle has been much easier from a fatigue point of view. I still want a nap in the afternoon, but they don't need to be as long [20 minutes vs 1 hr] and somedays I am actually able to push through and do without.
I am also on the 125mg, so maybe there is hope that your next cycle will be easier for you. [?]
*susan*
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Chattykat, what is this "dusting" you speak of?
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ShetlandPony... Dust bunnies drive me nuts! But, I'm letting it go, among other things.
Susan... I sure hope I see some fatigue relief in the next cycle too. Glad you're seeing some improvement. That's definitely good to hear. -
I've asked my DH if he wants me to get help with the house keeping and he says no he'll do it. I do the laundry, cooking and dishes in steps. He does the vacuuming ,mopping and dusting and throw something on the grill. If I don't feel like cooking we have take out. I'll be going to Hot Springs AR. with 2 of my friends this week for 7 days. I already told them ,that I'm going to rest and relax. I prepared my DH some meals , because he'll eat junk and cereal the whole time just about.
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Had a brain MRI yesterday and it came back normal much to my relief. So feeling a little more chipper today. Only 4 ibrance pills so far but I think I'm feeling some slight fatigue creeping in. I was helping my DH stack fire wood for a few hours just to keep this body moving and felt a tiny bit of whoozyness, but pushed through it. 3holly I agree about trying to keep the diet good and in balance to see how it goes. Easier said than done sometimes as that is time consuming in itself.
Gotamal, moving is one huge job in the best of circumstances so very understandable that you feel wiped out. Welcome back to the Bay Area though, where my family is from!
Chatty, I really like the idea of prepping a bunch of food on Sunday and am going to give that a try. I always bomb out in the evening more than morning too.
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Hi ladies!
Since I have written last I switched my care to Johns Hopkins which was a great choice. I have better access to test results and reports, which I love. I am day 15 of the 3rd cycle. I am an assistant principal at a high school that doesn't have the easiest population of kids to handle. School started this past Monday and I had alot of anxiety leading up to the first day. Did I have the strength to keep up? Is my immune system strong enough to be in a building with kid germs? My counts have always been slightly low. My Ca 27.29 was at 10.7. I am worn out! Body aches... Back hurts...ribs hurt and feet are throbbing. This has been the worst I have felt since starting. Any suggestions for relief with the achiness?
Monika
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Monika,10.7 is great!! What you are experiencing is my biggest fear about going back to work in October. I am a nurse and stand on my feet and walk all day. I already get tired and achy just watering the flowers! Germs are also a concern for me, I am exposed to all kinds of germs...norovirus, flu, shingles, MRSA to name a few. Are you taking pain meds, I intend to take my meds as soon as I get to work, to maybe get ahead of the pain. I am also open to any suggestions that anyone has
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Monika, try soaking in a bath of hot water with 2 cups of epsom salt. That really helps with aches and pains. Sounds lije you are doing great on ibrance.
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Well ladies I'm on the lowest dose 75mg. My platelets were critical on 100mg. I did my blood work last Wednesday and my coubts were low but ok. But my TM went back up. I hope to try another cycle to see if that low dose will really work for me. If not it will be chemotherapy. I am not looking forward to that at all. Still praying by body will respond to ibrance. Good luck to all!
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Sending prayers and good vibes for you Sunshine!
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Sunshine, sorry to hear the dose had to be reduced again. I hope your platelets increase and you have a good long success now.
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Monika, some essentials for managing work with achy body are: good chair to support your back at work, taking regular mini breaks to sit down/rest your back and body as the job permits. At home, try to minimize cooking/cleaning/etc. where you are leaning over things - like the oven, sink, dishwasher - it can aggravate rib/back pain, use heating pad, stretch/do yoga as your body permits. I also mostly work out at night now so I can rest my back/ribs afterward while I sleep. It is as if my bone mets have a quota of daily activity and once I hit it, my back/ribs get fatigued. Seems to improve with each successive XGeva shot though. One other thing to consider - my onc put me on Cymbalta for joint pain. It has eased the joint pain to manageable levels and also seems to improve the bone mets pain a little.
I am on 100mg of Ibrance and in my 3rd cycle now (1st cycle 125mg, 2nd and 3rd 100mg). My counts were good last cycle and my neutrophils never dipped below 1.1. My doctor told me I didn't need to do bloodwork mid-cycle this round because my counts were stable last round. However, my worried husband insisted I do labs at the 2-week point, which I did. It turns out my neutrophils are down at .7. My doctor is keeping me on 100 though. He stopped me on 125 when my neutrophils hit .9 but told me he would keep me on 100 as long as I can stay at .5 or higher. Hoping I can stick it out here and don't need to move down to 75 at some point.
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So I've been at the Cape (Chatham) since Thursday night visiting my sister and brother in law with my DH. Woke up this am and was throwing up. Felt hot and sure enough my temp was 103. So my sis took me to Cape Cod hospital in Hyannis. My left side is very hot to the touch and is very red. I can't believe I have cellulitis again. Will be put on vancomycin. Won't let them admit me here. Want to go back to NY. My implant may have to be taken out. Just can't believe this!!!! My final sc was October 2014. Don't know why this happened now!
Babs
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Babs, I am so sorry that you are going through such a terrible time. I agree that if possible, get back to NY where you feel more comfortable and confident. I know I would feel the same way, especially if the implant needs to be removed - and I sure hope that's not the case! Please keep us updated. I will be thinking of you and hoping you begin to feel much better very soon.
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Babs, so sorry feel better. Nothing worse than being sickaway from home. Don't blame you for wanting to go home to familiar surroundings.
Chattykat, I also got a housekeeper once per week who also does most of our laundry. It is really a load off.
Well, enjoy all. The Sunshine State is less than sunny today, but at least TS Erika dissipated so we didn't have to evacuate, since we live on the beach.
Hugs, Myra.
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Getting a 2x/month housekeeper shortly after I was re-dx'd with mets was one of the best things I've ever done. There's no way I could keep up without her. I would economize elsewhere if I had to not to be without her.
Babs, so sorry about the cellulitis. Hopefully, things will improve quickly when you're home. And I hope you won't need surgery.
Can anyone else speak to gastro issues with Ibrance? I finished my 1st cycle 3 days ago, and I am still dealing with excess bloating in my lower abdomen (bowels). At the suggestion of a Cigna pharmacist who called me on Friday to be sure I'd received my 2nd cycle meds and asked me about any SEs, I bought some Gas-X yesterday to see if that helps. But some nights I have been so bloated, I look 6 mos. pregnant. It's a little better now that I'm in the down week, but not totally gone, and I'm just wondering if anyone else has had a similar issue, since "bloating" isn't specifically mentioned in Pfizer's literature. I realize it could be a combo of Ibrance and the increased pain meds I've needed the past few weeks, but looking for assurance I'm not alone and any tips to deal with it.
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Sorry Deanna, no bloating at all. Myra
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I am so sorry you must go through this.. Sending prayers and positive thoughts your way.
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I also feel bloated after 2 weeks and am putting on weight! My hair is definitely thinning and very brittle as are my nails. Does anyone know if it is ok to take Biotin supplements while on Ibrance
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Oh do not be treated in Hyannis. Perfectly good spot to have fish lures pulled from your fingers, but not for what ails all of us.
All my bowel issues have improved with each cycle. I found that dairy, even cheese, caused some bloating. Now? No problem now with cheese which is good since that it how I keep my calcium up. I don't do any non-fermented milk products.
*susan*
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babs6287 im sorry to hear your situation, hang in there because there will be better days.
Cheers
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I'm trying to stay calm but this is really throwing me for a loop. I'm as achyascodbe. At the Providen amtrak station waiting for my train back toNY so I can be hospitalized there!
Babs
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Oh dear Babs. Wish I knew someone headed to NYC from there today, but all my Cape friends have rented their houses out this week and are flung about the Northeastern countryside. Safe travels.
*susan*
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Monika - I have had to work a pretty intense outdoor job since cycle 3 ( plus my mom went into hospice and died cycle 1 and 2 ) .. Going into cycle 9... Have worked the whole way ,, just stay hydrated and be prepared for a few " hit the wall" days on week three. Just means you don't hAve that third or fourth wind you a can draw on ...I have had to accept that in this drug. It gets better each cycle
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cjanet,
My WBC was down to 1.9. Went to see my Chinese medicine doctor a couple of days after that test and retested the next day. My WBC went up to 4.0! That's a big turnaround in just 4 days.
Hugs, Susan
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yes....gassy, bloating and large hard BMs....never had that before....sorry if TMI....a very
slight case of diarrhea might be welcome..
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Babs, sorry to hear you aren't feeling well - the Cape is a great place to vacation, but no place like home if you are feeling sick, and I wouldn't want to be in a hospital down there - however, I heard the Jordan Hospital (Plymouth) is good (not far from the Cape). My family always goes into Boston if there's anything serious, though. Hope you are back in your own bed and resting comfortably soon.
Monika, good luck with school and I hope those kids take it easy on you.
Sunshine, hoping and praying for positive news for you and everyone.
Haven't really had gas, just heartburn/reflex - except with a certain type of root beer. Can't drink coca cola at all anymore, and can't drink tea. Maybe you just need to adjust your diet, it could be that something is reacting with the Ibrance.
Gearing up for early morning scans, will be glad when that is done!
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Holly. Hoping the scans are good
I'm back from the Cape and am on my way to hospital now. It just never ends!
Babs
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Did someone mention taking Prilosec for Ibrance heartburn? If so, I thought I would share an article I was just reading tonight. I don't always agree with everything Dr. Mercola writes, but I do remember seeing this research recently because a friend of ours had actually had a heart attack shortly after being put on one of these PPI meds, and I'd sent that research to him. I know we're often put between a rock and a hard place when we need meds to counteract our SEs, but I thought this was worth knowing about. http://articles.mercola.com/sites/articles/archive...
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Interesting article dlb... I have a hiatal hernia so acid reflux is something I've always lived with... I take the over the counter Pepcid but have noticed an improvement in my acid reflux since I started the Ibrance. (weird) But, at the same time I have doubled my intake of water and have been trying to eat as healthy as possible. So, that could be why as well. My PET scan during hell month (yes, that's what I call it) during the diagnosis phase of my BC, also revealed that I have gall stones. Yay me... particularly since surgery is the last thing I need right now. So, I have significantly reduced any foods in my diet that might make that any worse and was told that a change in diet might help me rid myself of the gall stones naturally. But, haven't found any info anywhere that confirms that this is possible. So, if anyone finds any interesting info on that feel free to send it my way.
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Chattykat I also got a housekeeper about a year ago. With my work schedule it was getting ridiculous to try to keep up with the house. My husband resisted at first and said he could do it. His cleaning was unacceptable. Am so happy to have her. She comes two weeks on and one week of and will come if I'm having company. My wood floors haven't looked this good since they were new. I think we should treat ourselves and conserve our energy for what we really want/need to do. The second best thing I've done to make my life easier is to order most of our food online. In the NYC area we have Fresh Direct, but I'm sure there's something similar everywhere.
Babs so sorry about your infection. I had a latisimus flap reconstruction in 1998 and in late 1999 got a staph infection. Was at NY Presbyterian for three days getting vancomycin and I did have my implant taken out. The good news is that once the implant was out, the infection cleared up quickly and I did have a tram flap reconstrution done in early 2000 which has been good ever since. I know its not something you want to deal with and hopefully your implant won't have to come out. Praying for you.
Sunshine hope the 75 works for you. For your platelets you can take Ashwaghanda twice a day before meals. It was recommended by my onc and I've never had an issue with low platelets.
Dorothy
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what did your doctor do to turn your counts around? I also hired a housekeeper every other week, it is so helpful! I am returning to work also tomorrow as a teacher of 6th graders, and am on cycle 1, day 17. I feel great just fatigued. My counts were low last week but not low enough to stop, and I will be checked again next wed. Hope this continues for all of us to be the answer! Good luck and good thoughts to all of you! Thank you for sharing, this site has been a tremendous help
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Hmm Deanna, I've had no bloating but I do have constipation from my pain meds. Are you sure that isn't it? I do hope the Gas X helps you.
Babs, sorry you are sick.
I am in lots of pain as I mentioned on bone met thread and just trying to work. We have had help twice per week all summer through donations. It is now time to hire someone though as this woman has to go back to her regular family for the school year. Her last day is tomorrow. I have 2 young kids and DH is busy and we just can't keep up. I just can't cook at night. It's just too much for me. We order out a lot and people bring over donated food. I am in so so much pain I can barely imagine doing much at night without my pain meds.
I will start 100 mg Ibrance tomorrow. Lets see if that helps w pain and reduces these bone mets. I've been on Xgeva since May but still tons of pain. I admit I'm beginning to lose hope with this. I am making very short term plans at this point. I just don't trust what tomorrow will bring or if it will even come. Sorry to be such a downer.
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dlb823, Thank you for that Prilosec article, I heard about the heart attack risk on the news, and I have already switched to Zantac which is working fine now, although the first couple of weeks I think I needed to adjust to it. Sometimes I also take a couple of tums before bedtime along with the Zantac if needed.
Babs, glad to hear you are finally home and hopefully on the road to recovery.
CJanet, I hope you can get help with your pain soon, try not to give up hope, maybe the Ibrance will be the answer.
Don't want to deliver bad news, either, and it may not have anything to do with Ibrance, but my scans today showed blood clots on my lungs. I was halfway home and got a call to go back in and get a shot (have to do it twice a day forever now, I think). I have heard that blood clots on the lung can be a side effect of Ibrance (not common, though), but it is also a side effect of late stage metastatic breast cancer, so it could be either, not necessarily Ibrance. My liver spots were slightly larger since my last scan, so I am going off Ibrance (went 6 cycles on 125 mg). I will have to decide whether I want to do Xeloda or another chemo (meeting Thurs with onc).
I tolerated the Ibrance very well so I am very disappointed to be moving on, but I know the drug has been a great help for many others, so I wish all of you good luck and am hoping and praying you have great success.
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For those of you who got mouth sores, how long did they last? I'm rinsing multiple times daily with warm salt water and using lidocaine viscous for pain (but it's SO temporary). On day 4 or 5 with the mouth sores. What am I looking at here? Days? Weeks?
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Cristina and 3Holly--hugs for you both
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Holly so sorry to hear this news, but really glad that they found the clots before they caused any further damage. Strange that you had no side effect from the clots.
Best of luck with whatever you decide. Please keep us posted on what treatment you and your onc decide on. Praying for the best possible results from your new treatment.
Dorothy
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I had them a week and used baking soda rather than salt... Seemed to work.
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so sorry to hear that, Holly! You are in my prayers.
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Cristina-I'm hoping Ibrance offers you the relief you're looking for.
3 Holly-I'm glad they found the blood clots-at least now they can deal with that before you have an issue. Sorry Ibrance wasn't the answer for you!
I'm still in the hospital Dr's feel the cellulitis is a by product of the lymphedema and not a problem with my implant I hope they're right!!! I MIGHT get out tomorrow?!?! Fingers crossed!!!!!!!!!!!!!!!!!!They're planning on keeping me on an anti-biotic for the rest of my life so, hopefully, I won't have any more bouts with this cellulitis. Hoping this works.
Babs
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Babs,
I do hope this all works out the way you want it to. Be well,
*susan*
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Don't mean to intrude but my mo is considering Ibrance since tamox has failed. I qualify for Medicare oct 1st. Does anyone have advice about part d? You can pm me.
Thanks for starting this thread. I've found it invaluable and gives me a great reference for discussion about my treatment.
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Now I'm nervous about Ibrance. I had blood clots in my lung as a result of Tamoxifen that also showed up on a routine CT Scan. Had to do the shots for about 2 weeks. Really want to try Ibrance and have a break from chemotherapy. Have to decide tomorrow.
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Thanks, everyone, for your kind words of encouragement. I will let you know when I decide definitely what to do next - leaning toward Xeloda since I don't want the needles or hair loss (just getting used to the 2 needles a day now for the clots is enough for me), but I need more info on Xeloda versus Taxol (tolerated in 2008) or another chemo (Navelbine or another one was also mentioned, but Xeloda and Taxol were recommended by the 2 oncologists I consulted). Apparently the hormonals will not be an option since they aren't working for me.
Florence, sorry I made you nervous - Ibrance is a very tolerable drug, and I don't think blood clots are common, but ask your onc to be sure. I don't know whether the Ibrance caused the clots, but if it did, it is probably rare (again, though, ask your onc to be sure). I was also on tamoxifen for 5 years, and I know that blood clots are also a symptom of last stage metastatic cancer, so it may have nothing to do with the Ibrance and could just be effects of years of treatments since 2008. I hope you can do the Ibrance, it would be a nice break from chemo I am sure, as long as the doc thinks it won't cause more clots. Interesting that you did not have to stay on the shots after the clots dissolved - the nurse indicated that I will stay on the shots forever, but I haven't had the appointment with my onc yet, hope he has a different opinion!
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Thanks for the words of encouragement, Holly. I see my oncologist in a few hours and will decide--chemo or Ibrance? Also, I am waiting for PfizerRxPathways to make their decision as to whether or not they will fund the $1,800 copay for me.
I had the "hand and foot syndrome" pretty bad with Xeloda, but I understand that not everyone experiences that. I could barely pick up a pen. My feet were still peeling weeks after I stopped. I even used booties and gloves infused with oil at night. Perhaps if they had reduced the dosage? Not sure. My oncologist says he has had women on Xeloda for over 5 years successfully.
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Florence, good luck with your appointment and treatment decision, and thank you for letting me know about Xeloda, very sorry it was so hard on you. I hope they will make Ibrance affordable for you since the common SE's are much easier than chemo.
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Just came from the oncologist. Starting Ibrance tonight. Received a 1-month supply from the Pfizer drug rep. Still waiting to hear the decision from PfizerRxPathways. Should be today or tomorrow. Will be taking 2 aspiring a day because of my prior blood clots in the lung from Tamoxifen. SO THRILLED not to have take chemo today. I can't tell you.
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Holly I was on Xeloda for a little over a year. It was not that difficult. The first month I had GI issues, but that resolved. When I developed the hand/foot issues my onc did not lower the dose, but changed it to every other week rather than two weeks on and one week off. That really relieved the hand/foot symdrome. I recall that they also gave me some cream to use. The main annoyance I had was what appeared to be paper cuts near my cuticles. I used neosporan and the covered with a bandaid. That usually relieved any discomfort. Overall not a difficult drug for me. Wishing you much success on Xeloda and hopefully NED.
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Florence, I am so happy for you! I think you will feel better and hopefully it will delay the progression for a long time. I like your doc's idea of taking 2 aspirins, that would certainly be better than these dam shots for the clots - maybe I will suggest that to the onc on friday. Good luck with Ibrance!
Pearlady, thank you for that info on your experience with the Xeloda. Hopefully I will get some of my questions answered at friday's appointment so that I can make a definite decision. I am very nervous about starting chemo again along with dealing with these shots for the clots - I have been refraining from wine for a long time since it dehydrates me, but I had 2 glasses tonight (needed it!), and started playing my music which helped to calm me down.
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Babs, did you go home today? I hope so. Nothing beats your own bed when you are not feeling well.
Florence, good luck on the Ibrance. I had a lot of fatigue the first two cycles (nothing like chemo though) but now on my fourth and I feel relatively normal.
Holly, sorry Ibrance didn't do it for you. I just finished my fourth cycle and my TMs went up again. Even though my last scan showed no further progression, most likely I'll be joining you on Xeloda in October. But first I have to take my son up to UC Santa Cruz for his first year of college, and then off to Cabo to celebrate 20 years with my DH. so I will be happy living in Denial land for the next 30 days. I like it there.
Pearlady, your words of wisdom are always appreciated.
Stefanie
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I am on my third cycle, dose has been reduced once and my tumor marker went from168 to 62! Now my insurance wants me to do 90 day mail order, but I am concerned if my dose changes how they will handle it. In addition, I live in Wisconsin and dont want 30K in drugs sitting in my door in freezing weather or blazing heat for 8 hours. Has anyone else dealth with this?
wishing you all the best!!
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Yay for lowering tumor markers, kmarq! I'm surprised the insurance would give you a three-month supply. Mine won't even do that with cheap drugs. As far as problem weather, would the pharmacy agree to ship it to their pharmacy near you? That's what I have them do.
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Night before I start Cycle 4 and just like last month, I feel like crap. My body knows that it is time to get that drug back into my system. Blood work is back for the most part. My white blood cells are up to 4.7!!! Red cells are having a harder time of this protocol. I will see my oncologist tomorrow, so it will be interesting to see if she is concerned. This cycle was easier overall. This low day was a surprise.
Still waiting for those all-important tumor markers to come back.
*susan*
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kmarq, I had the same concerns re. just getting Ibrance by mail from Cigna's specialty pharmacy, and I was told if your onc reduces the dose, they will just fill the new RX with the same co-pay. They told me it's just part of being an oncology pharmacy -- that oncs change doses all the time after meds are sent. As far as the heat/cold issue, that was also a big concern since I live near Palm Springs where temps are 110+ much of the summer, and I didn't not only want the meds left in my entry, I didn't want them in a hot truck all day. On that point, I was told they ship overnight (which they did), and then I authorized a signature needed, so that I could be here and be sure the package wasn't hot when I got it, which it wasn't. Can't say for sure your pharmacy source will be the same, but hopefully they will be.
I also should mention (and it's probably been mentioned earlier in the thread), my co-pay would have been $60 for a non-generic, but with Pzifer's co-pay savings program that the pharmacy registers you for, it brought it down just $10, which I really appreciated. I was also told you have to re-register for this program each year.
So I am on day #27 of my first cycle, and all of my counts were very low. My granulocytes were at 0.9 (900) -- too low to start my next cycle. We'll retest on Tuesday. Also WBC was 3.1 and HCT was 32.6. Hoping everything bounces back. We'll see. TMs were done, but won't have those results for a day or two.
Babs, hope you are home by now and feeling better! Florence, so happy to hear Pfizer is taking care of you this month! What a relief!
Hi to everyone else who has been so helpful on this thread! By the way, I think I'm the first patient my local onc has had on Ibrance, and initially they recommended continuing w/cycle #2 and monitoring, in spite of my low counts. Thankfully, I was well-informed thanks to you all, and immediately contacted my UCLA onc who confirmed waiting and retesting in a few days. But without you ladies and this thread, I would never have questioned them. Deanna
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Kmarq, great that your tumor markers are dropping! Mine have also dropped from 203 to 64 after 4 cycles. Will have them done on Tuesday, will finish cycle 5 on Monday. Susan, I have had the occasional day where I feel like crap, just had one last week. Feel a little off some mornings when I first get up, but usually passes quickly. I get my Ibrance by mail, they will only send out one month at a time due to the expense of the medicine. Stephanie, enjoy your trip! There is nothing wrong with living in denial land sometimes, I have lived there myself.
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Just a quick update on Ibrance. I had my appointment today for the first visit after going down to 100 mg. Unfortunately, my neutrophils were .6 and too low for the med. I have to go back in one week, if the counts don't come up I may have to go off this med. I am disappointed but I do wonder: I still really want to stay on the Ibrance. Tomorrow is CT/PET and that will tell if Ibrance has been working...more update Friday. Carolyn from Music City
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Hi Florence,
I also had a ridiculously high co-pay for the Ibrance. The Pfizer $10 co-pay is not an option for those on Part D. But, there is a need based program that they run that has nothing to do with Part D. I don't remember the $ cut off for a couple-look back on this thread when I wrote the amount-think its about $78,000 They don't ask for proof of earnings so you don't have to collect reams of documentation. Good luck!!!! My SE's on Ibrance have been very tolerable!
I got out of the hospital yesterday afternoon and went right to my MO who said my blood levels looked fine-since I was on antibiotics she was worried they'd go down a lot and I'd have to hold off the Ibrance for awhile. My MO delayed my scans from mid September til the very end of September-afraid I'd get an uptick on my Pet scan due to the cellulitis. Seems waiting is part of BC-we really do wait a lot-for tests, results and drs appointments.
Babs
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So much happening in Ibranceland! My MO even asks me what I've learned here. When I mentioned my faint feeling, she asked if others have mentioned it.
I'm in the middle cycle 4. My SE effects have been less this time, with just an occasional weak day and faint feeling. I have gained 3 pounds this cycle 😕. My counts have rebounded well. ANC had been as low as 1.0 is now 2.3. WBC went from 2.3 to 4.3. CEA TM has dropped from 170.5 to 112.4 next is scan Sept. 21 to get the real information. Praying this is really working because it seems like a med I can really function on.
So grateful to all who are sharing your stories. It really helps to not feel so alone in this. Prayers for all.
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Hello ladies,
I hope this is the right place to join? I was dx with stage 4 bc on 06/08/15 with liver mets. I had my ovaries out last month, started on Femara 2 weeks ago and Ibrance last night. I am trying to stay as hopeful as possible. I was stage 4 from the start, so I am really trying to learn as much about bc as possible. I have no family history, BRCA negative and 34 years old!! I have been trying to look through all the threads and see where I fit in?
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Mama, Welcome! You belong anywhere you want! Certainly, you will want to be a member of this thread since we are all taking the Ibrance. Scan the thread titles as they become active, and chime in on any of them that strike a chord with you. And of course, you can start a thread to introduce yourself to other members. There is a thread for younger members which you might find particularly helpful.
Kaption, I too sometimes feel a bit faint, but I am not going to mention this to my oncologist unless I actually am forced to. I am attributing this "faintness" to letting myself get too dehydrated, along with the Ibrance.
The tumor marker that actually tells me what I want to know is still MIA. Argh.
*susan*
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Susan,
It's interesting that you mentioned drinking water related to feeling faint. I think I was actually drinking too much water. I was fighting UTIs for several months and was drinking lots of water. My sodium level fell below normal for a few weeks. Back to drinking a normal amount now. Still had a faint spell yesterday. But, brief. MO suggested taking my blood pressure when it happens, but that hasn't shown anything unusual so far. Just part of the SE I think.
Welcome Mama. It's a very helpful, supportive group.
"Hat" -
Kaption, I think it could be the sodium level, although dehydration can also be a cause of fainting. A couple of others here mentioned they fainted, and one had low sodium - Sandilee, I think? A friend's son fainted at the high school due to low sodium also (she cooks low sodium for her husband, but the kid needs more sodium, maybe because he's a runner). You should ask the doc to check on it since you don't want to fall and get hurt. Glad to hear your TM's are improving, hopefully the Ibrance is working!
Welcome, Mama, and good luck with Ibrance!
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Welcome Mama! This is a great place to be for much valuable information as we all navigate this new drug. There are many threads for a variety of topics related to your diagnosis. I tend to hang here and the bone mets thread. Don't forget to check out the thread Life does not end with a stage 4 diagnosis, can be very uplifting on a bad day.
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Thanks for the warm welcome, and I appreciate the thread ideas! I have to admit I need a bit of uplifting lately. I am sure things and emotions will settle once I adjust to the meds and side effects for sure!
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Thank you, Holly. I did increase my sodium. Started carrying "emergency" potato chips. Especially went I walked for exercise. Lol. But, that's probably why I've gained 3 pounds. Need to reduce the sugar now! Thanks for the info.
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Emergency Potato Chips!!!! I just love this.
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I know. My friends are all jealous!
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Hi Ibrance ladies,
Thought I'd chime in about the fainting. I had a couple of episodes that were deemed low blood pressure. The heat and dehydration can push a low blood pressure into dangerous territory, especially after eating or drinking alcohol. The sodium recommendation is to help keep the blood pressure up a bit. But drinking plenty of fluids and staying hydrated is really key. Good luck all of you.
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thanks, Sandilee
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CA 27.29 is down 37 points!!!!! That is a cool 30%. Yea Ibrance.... now I need to buy some potato chip snack packs. :-)
*susan*
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Hi Ladies,
Patient Access Network for Medicare D patients, select Metastatic Breast Cancer- Medicare
https://www.panapply.org/ -
wonderful, Susan!! Celebrate
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F$CK. My WBCs are still low. I'm only on day 3 of Ibrance. The nurse has to call the doctor and they may make me hold for a few days. I told the nurse, I'm finally feeling better being on it even just a few days, don't pull me off, but she's saying we have to do what's best for your health. I'm tempted to stay on it and lie. If I don't get the Ibrance my tumors grow. I can feel them grow. I am so frustrated. I asked for a shot to bring up my WBCs. Ladies, just tell me what to eat or take to bring them up. What is the chinese medicine someone took? I will buy it. Thanks! This is an EMERGENCY to me.
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Cristina, why did they check your counts after just 3 days, and how low are they?
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Susan, I'm so glad you got good news on the tumor markers after that nerve-wracking wait.
Stefajoy, happy to know you are here to see your son off to college and to celebrate your 20th anniversary. Every time one of us gets to do something like that, I am so thankful.
Welcome, Florence, Mama2twinsplus2, and all the other new members. I can hardly keep up with this thread now. It's good that so many are getting approved for Ibrance now.
Finally, about emergency potato chips. I love them as a treat (olive oil ones), but when my mouth feels iffy and I don't want to risk chewing anything sharp, my go-to is a pack of Seasnax. They are sheets of roasted, salted seaweed (also made with olive oil) and they are yummy and they count as a vegetable!
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Susan, great drop in your tumor markers! Mine has also responded to Ibrance. cjanet what dose are you on? I was only able to tolerate 125mg for one cycle, was lowered to 100mg and having no problems. WBCs not normal but good enough to continue. All other numbers are good. Shetland pony, I am also happy to see so many people approved for Ibrance, we are seeing new people all the time. The more the merrier, we can all share tips and information
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Shetland Pony, thanks for the tip. Potato chips are not very healthy, for sure! Just quick salt.
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Cjanet, I know you are scared, but listen to your doctor. You want to find the right medicine in the right dosage. Most cancer, as far as I know, does not grow or respond really quickly. Take time to sit and talk to your doctor so you can both make a good decision. Breathe!
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How many cycles did it take for you ladies to start seeing significant improvement in your tumor markers. I'm almost done with my second cycle and so far mine have gone up not down. Really worried that Ibrance isn't working for me. Next labs will be on the 11th... crossing my fingers they go down.
Welcome Mamatwins... I was also recently diagnosed with Stage IV this past June... also straight out of the gate. Totally blind sided me, so I'm also a newbie to all of this. You are exactly where you need to be. This is a great forum for support and information.
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Chatty, my tumor markers came down after the first cycle, but I was told before I even started Ibrance to expect them to go up before they went down. Maybe they are seeing this happen, although it didn't happen to me.
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Chatty,
My tumor markers were down after 6 weeks. But as Lynnwood said, I think it has been different for others. -
I did read somewhere that the hormone therapy also might cause a temporary spike... since I started hormone therapy the same time I started Ibrance that could also be a possibility. Guess I'll just have to be patient and see how the next cycle goes.
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chatty, i just finished my fourth cycle. TMs gone up every month so far. Onc wanted me off after 3. He said if it doesn't start going down by third cycle it probably won't. But my scan showed no further progression, So I wanted to try it a couple of more months. I feel like this drug is so new, you just never know. That said, I won't be surprised if next month is up again... Then I'm off. I hate being in the minor it if women it didn't work for.. But I think that is where I am at. Good luck with your next labs. That'll tell you a lot.
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I'll bear that in mind Steffajoy... I am willing to keep going longer as long as there is no progression just to give it a fair chance. Two cycles just probably isn't long enough to know for sure. It's just so exhausting... I try not to worry but how can you not. I hope yours go down soon...
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Month one my blood markers skyrocketed as a percentage. Then month 2, the numbers came down a bit. And now, end of month 3 is my Eureka month. Hoping for more downward trends next month, cause I am greedy that way. :-)
*susan*
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Not greedy.
It makes sense if you've started multiple new meds that you would have more circulating dead cells and higher numbers. But I'm no doctor.
I'm still waiting for my appt with mo but he mentioned trying this. Crossed fingers.
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Does anyone else get their Alk Phos checked regularly? I was a bit shocked to see mine went from 232 the day I started Ibrance+Faslodex a month ago to 325 yesterday. I'm still waiting for my CA27-29 results, but I was sick when I saw my Alk Phos continued to climb -- and pretty significantly -- the first month on these new meds.
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dlb, mine haven't changed that much. I hang between 72-78. I looked at the past year.
*susan*
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While my TMs rise, my aik phos has come down from325 to 175. Whacky stuff. Congratulations Susan, kaption and Lynnwood on your numbers. Myra
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My all phos has been elevated ever since I was diagnosed with cancer the first time in 2008. My onc was always checking it because she said it is indicative of bone or liver involvement. She had me get a bone scan every year which were clear until this year. I get a CMP which includes the alk phos every 4 weeks. Mine has been as high as 404, coming down to about 178. My onc also says that Xgeva can make it elevated
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Dear Cjanet,
Don't overreact to being taken off Ibrance initially...This is one more powerful drug combination...We have to work within the guidelines regardless of how frustrating it is. Hint: I almost wiped out all resistance by taking the 125 mg and shaking some out trying to make 100 mg pills. Anyway, I am now on a wait because even on 100 mg. my neutrophils are way too low. We just have to bide out time...Hard yes...good luck! Carolyn from Music City
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Unfortunately when I had scans done a couple of weeks ago they show some increase in size of the bone met in my hip. It surprised me because there hasn't been any pain. So I stopped the Ibrance/Femara and have started Faslodex. I did 4 cycles of Ibrance 1 at 125, 2 at 100 and 1 at 75 with extended time before I could start each cycle. My onc doesn't use tumor markers and felt we should move to the Faslodex instead of trying to fight the low white counts. I read somewhere how can your body fight the cancer if your immune system is almost non existent. I'm really happy for those Ibrance works for it would be great if there was a way to tell who it would work for without wasting the time of trial and error. I was on Femara only for 10 months with no progression but added Ibrance and then it stopped working it kind of makes me wonder what would have happened without adding Ibrance
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My markers elevated the first 3 months then started going down. What's more important is your scan results. My scans at 3 mos were iffy. Waiting for the next set of scans!
Babs
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I was on 125 mg for about 2 weeks and came off. A week later, this week, I started 100 mg for 2 days. They checked my levels just to see where I am at, and decided they were too low. I don't know the exact levels, she told me but I forgot. So now I am on nothing, though I did sneak a dose last night as I was feeling angry about stopping. The doctor ordered 75 mg. They will check my blood levels this Tuesday and if they are ok, I can start the 75 mg.
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Good to know that the fatigue decreases, Stafajoy. I'm still waiting to hear from Pfizer about my appeal with PfizerRxPathways. My income level was too high, but an $1,800 copay is too high for anyone!
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Florence, that is ridiculous, hope they will fix the copay soon for you. My onc said (at today's appointment) that the blood clots are a side effect of cancer, and he doesn't think it was from the Ibrance, so that's good news for you. Unfortunately since my cancer is not curable, they will probably never take me off the shots (they have found the shots to be more effective than cumaden pils). Maybe someday there will be no shots since there is another pill that recently got FDA approved, but I haven't seen any reports yet on how it is working or the SE's.
Duck, that is weird that your femora stopped working when they added Ibrance. Wish they could figure out why it works for some and not others, and why TM's are accurate for some and not for others.
There is a new finding that people on beta blockers (for high blood pressure) have been tolerating chemo much better than others for some reason. Makes me want to have high blood pressure (I am on the low side, unfortunately!) Hopefully they can figure out why the beta blockers work, and hope it will lead to something that can help everyone on chemo, no matter what the blood pressure. Beta blockers are very inexpensive so potentially could help many people.
I will get a blood test next Wed or Thurs to be sure my blood is high enough to start Xeloda, then on to Xeloda. Also might need more radiation if my upper back doesn't improve - having a hard time lifting the laundry basket,etc with pain up near my neck (seems everything involves bending, and deeper bending for us tall people).
CJanet, I would ask what the policy is at other hospitals for your blood levels, maybe your doc is being too cautious with the Ibrance? I would get another opinion.
Good luck everyone, praying for all good results!
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I have 1 pill left but feel so awful today that I don't want to take the last one on this cycle . Have no idea what my counts are don't get checked til wed. Low temp and chills, no appetite, many bm and soooo fatigued.called dr twice, no response yet??!!! Should I take the last pill of cycle 1 or not?
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So I just checked on-line and my TMs went up just a bit (307 vs. 298) during my first Ibrance cycle. I'm not disappointed because last time (pre Faslodex+Ibrance) they had gone up 50 pts. in two weeks, and the time before that they went up over 100 pts. in two months. So hopefully these new meds are slowing things down.
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Ibrance: the End. My tumor markers are up. Progression was diagnosed from a CT with contrast and PET that was done yesterday. Sorry: so sorry to end Ibrance but it did not do for me...I am off to IV chemo therapy next week. I still feel well and have minimal pain...I am so sorry to have "failed" Ibrance and Femara but onward and upward. Carolyn from Music City. With credit to Dr. Roi Dagan of the Proton Center of the University of Florida. What a stellar physician in this difficult medical world.
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Piemaker, I doubt skipping one pill will make much of a difference. It sounds like your counts may need time to rebound, and if you are feeling that lousy, my guess (it is only a guess) is that they will tell you to skip this last pill. My counts were too low this week (had some chills, too, but no fever) - didn't feel sick or anything, but the nurse said to throw away the last pill since I was low and since I am going off Ibrance after this cycle (hated to throw it away due to the cost). Hope you are feeling better soon - I think you will recover during the off week - or maybe they will adjust the dose.
Car2tenn, so sorry to hear you have to move on. I hope you do well on the chemo and tolerate it well. My first chemo was IV (adriamycin/cytosin and taxol) and it worked well for a long time (that was back in 2008) and I tolerated it well. I am praying for you!
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Hi,
I am new to this community. I was diagnosed with metastatic breast cancer in my spine in November. My recent pet scan was clear although my tumor marker levels have been increasing the past three months up to 125. I was at 175 when it showed up on my spine. I have been on Anastrazole with shots of Lupron to put me into menopause , and my oncologist wants to now put me on Ibrance with Letrisole.
I do fit the specifications for taking it although I do have a few concerns:
- This wouldn't be my first endocrine based therapy since I have already been on Anastrozole
- I wasn't postmenopausal at the time of my recurrence, but have been chemically induced into menopause with my shots of Lupron
-Ever since Anastrazole and Ibrance, I have had chronic bladder infections. This concerns me since Ibrance causes low white blood cells. My white blood cells have already been below normal since my first diagnosis.
Any help would be appreciated!!!
Thanks,
Mary -
Well, I guess I will bid you ladies farewell. Ibrance is not working for me. Since May of 2014 I have tried 4 hormone therapy drugs and two chemo pills. Xeloda worked the longest - 6 months. My cancer is not just in the bone but the bone marrow. I will begin Halaven some time next week. It has been 14 years since I have done chemotherapy and I am not ready for this party juice but am thankful for what is available. I am praying for those of you that Ibrance is working. Hang in there and try not to get inpatient. This thread is a great support group and loads of individual information.
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Suzanna, I'm sorry to hear that you did not have success with Ibrance. Such a disappointment when we are hopeful but have progression. I know the dread we feel to have to move on to traditional chemo, but as you said - at least we have that option and hopefully you will have a long success on Halaven with minimal to no side effects. Good Luck.
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Suzanna, I'm so sorry that you didn't get the response you were hoping for from Ibrance. Hopefully Halavan will work great for you!
Mary, for what it's worth, I was also on Anastrzole for approx. 18 mos. until it failed me. When my onc (UCLA) recommended Faslodex+Ibrance as my second tx, I asked her about going to Femara (Letrazole)+Ibrance, since so many women here are getting great results with that combo. Her response was that when an A/I fails you, it's best to switch to something that works by an entirely different mechanism. And since it's the Anastrazole that's failed you, you might want to ask your onc about this. And chronic low white counts could be a problem with Ibrance, since your ANC has to be at least at 1,000 to start Ibrance.
UCLA played a key role in the development of Ibrance, so they have quite a bit of experience with it already. Of course, your situation may be different than mine for any number of reasons, but I thought my onc's rationale for going to Faslodex made sense and might be something to bring up to your onc. Deanna
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Suzanna
Sorry to hear that Ibrance didn't work for you. Hoping Halaven is your answer!
Babs
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Sunshine,
How disappointing. So sorry that you are leaving us.
*susan*
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Sunshine, very sorry Ibrance didn't work for you.
Though I know it is hard to do, try to reduce your stress as I know moving to the next drug is very stressful. I think there is promise in these new Beta blocker studies which suggests that stress hormones trigger the development and growth of breast cancer and other cancers (certain beta blockers block these stress hormones, and I hope they can find other treatments that help block stress hormones since many of us don't have high blood pressure but still have very high stress levels).
Good luck with chemo, I am praying for good results for you!
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I'm with you Holly... My breast cancer diagnosis came a few months after a year of non-stop extreme stress. I believe whole-heartedly that it was the stress that fed my cancer and led me so quickly to stage IV. Now I'm stressed because of the diagnosis. Trying to de-stress but life just keeps throwing punches. Stress hormone blockers I think could make a huge difference for a lot of women.
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Hi ladies,
I just started recently breaking out in itchy bumps that look like mosquito bites mainly on my left side but I am very itchy in general over the past few weeks. I figured my skin was just super dry, but now that bite/hives like bumps keep popping up, I wonder if I am having an allergic reaction. Anyone have any experience with this?
Thanks,
Monika
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Monika,
I have had a few tiny, itchy spots on my hands that look like poison ivy.
But, I also had a reaction to something else I was taking (for a UTI) and when I called my MO she was concerned about shingles since my immune system is lowered. I mention that only because you said it's only on one side. I think you should certainly call your doctor.
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This thread can be very supportive and full of stage IV breast cancer info. This drug is very new and I pray successful for you all. I have however read afew things that are conflicting. I have seen a few members that are HER2-NUE +. Some using faslodex instead of femara which is the drug used in the approved trial study. We are all different individuals with different side effects and tumor markers as well as the different size dose. From my perspective there is alot more to be worked out in this drug. Praying sucess for all stage IV survivors whatever drug you use.
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I'm taking Femara with Ibrance but have been taking Faslodex shots for several years. The blood clots are also listed in the literature for Ibrance. A little discouraged and depressed today, not common for me. Started taking Ibrance 5 days ago.
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Can we fix the spelling in the name of this topic? It's "palbociclib."
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Wow, day 3-5 hit me on the backside of my head this month. Fevers, nausea, horrible hip pain, and general "yuckiness" all around. And at one of my lowest points, my thermometer died! Starting around 10am today, I began to feel better. A short nap between client visits, and I am back to normal. I remember that day 5 on cycle 1 and 2 were wretched, but last month it was not. Just shows you, every cycle has its own challenges.
Florence, I think that only the moderators can change a subject title.
*susan*
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I think that's the least of our worries--spelling. Sorry, I was a teacher.
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Susan, I have had a few of these days myself. I just finished my 5th cycle and happy to report that I only had one day like that this cycle. Maybe our bodies adjust after a few cycles.
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I do think maybe our bodies adjust some. I have 4 days left in cycle four. I've had a couple of "hit by a truck days" but have been SO much better than last cycle. Just took a yoga class tonight. Felt like a miracle
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Okay , bit off topic here but I figured this was a group that could answer this question. I'm flying for the first time with my foob and Ibrance/Femara--so what do I do doing through TSA security? Wear the foob and hope it doesn't set something off or go without it? Is it okay for the meds to go through the scanner?
Florence, Spelling haha. I was a teacher too and it's hard to turn it off.
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Ellelou,
I never had an issue when I traveled. I keep my meds in one of those Sunday-Sat holders. And as far as the foobs, do you have a card from your Dr about them? I did and showed them as I walked through security so I didn't have a prob with that either.
Safe flight,
Babs
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Ellelou, I have been thru security numerous times in 17 yrs. with my foob. Never any problem whatsoever. Myra.
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Ellelou, I flew in May, wore the fob with no issues. I put the meds in my carry on bag in their original containers, there were no problems at all. I think it's ok for them to go through the scanner, they are going through there for just a few seconds. I was also worried before I flew and was quite surprised at how easy everything went.
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it has been a heck of a week, with a nighttime drive from San Francisco to Reno last Fri night (so most of the kids would be asleep) and settling into our new (old) home. I didn't get to bed until 2 am, and got up at six with the babies, and I just don't feel like I've recovered. A couple of days since with a good long nap, I now feel that I was able to fight off the sickness (swollen neck glands) that I was getting, but I still feel like I've been hit by a truck. My sacroiliac joint, which gave me some trouble during pregnancy, has gotten much worse in the past week, and I just feel so weak. We are still looking for babysitters, so my 76 y.o. Mother and I have been managing the four kids alone. Not sure if a "normal" Cancer free person would feel tired too,but I'm suffering. Just two pills left in my first cycle...hoping to rebound on my week off. Please chime in if subsequent cycles have gotten easier from a fatigue perspective
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hi e everyone, day 27 of cycle 1, WBC 4, neutrophils 1.6 on Friday. I www as to start cycle 2 tomorrow but now I have a raging sinus infection and my husband was pneumonia. I guess I'll have to call my oncologists this morning. Can't sleep Marilyn
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Gatomal - subsequent cycles get much easier but sometimes it may take 3-4 cycles to work everything out.That is why they follow you so closely in the beginning ( you are on a trial right?). I had a dose reduction at cycle 5. I am now heading to cycle 9. The "hit by the truck" days are gone, blood counts are now normal and just a few quirky side effects.
Good Luck everyone.
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Gatomal
Yes thank goodness subsequent cycles get easier!!!! But sometimes it does take a few cycles for that to happen!
Babs
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Gatomal, my 5th cycle has been the easiest by far. WBC sitting at 3.2 , pretty much staying around there. I am on 100mg, my onc was thinking of increasing my dose but decided to leave it at 100mg. She said she would rather have my counts stay about the same, then increase the dose and have them drop. I have now "graduated" to bloodwork every 3 weeks and visit every 6 weeks. My onc said I am one of her patients who do better the less I see her and she is SO right!!
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thanks for the responses. It is encouraging! My neutrophils were 1.2 at two weeks on 125mg, so I wonder where they are now. The trial says they will stop drug for a few days if you drop below 1.0.I'll find out next Wed. I have an MRI scheduled the same day for my old spinal fusion. I've been having some pain Here's hoping I find some good babysitting help soon. Thanks all!
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Gatomal it does get easier with each cycle. I've been on since the end of February, so I've lost track of the number of cycles. Also my counts have stabilized. Right now I'm ready to start my next cycle tomorrow and all my counts are normal except the WBC, which is only slightly low. Had my counts down yesterday, so the onc feels that in the two days until I start on Thursday the whites will bounce back as they have been. I do take some supplements to help with the counts and have found that they also help with the fatigue. No hit by a truck days since the first few cycles.
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Glad to hear positive reports about the cycles getting easier as time goes on! My GRAN# bounced back from 900 six days ago to 1500 yesterday, so I'm onto cycle #2 as of last night.
But my RBC's continue to fall. In spite of eating a bit of molasses, some animal protein, and even an occasional vegan iron supplement, my RBC was only at 3.42 yesterday.
Question: Do you all get your CBC checked mid-cycle? My UCLA onc doesn't do this, but after seeing what happened to my counts the first cycle, my local onc's PA, who has much less experience w/Ibrance, thinks we should check counts weekly, and I'm wondering if that's prudent or really necessary.
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The protocol is that for the first two cycles you should have blood work done bi-weekly. Assuming your counts are good during those two cycles, you can then move to once a month.
*susan*
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Hi All - Hope, thanks so much for starting this thread and thanks to all for sharing your experiences! Finished my first cycle. Had pretty minimal side effects, but my ANC count dropped to .5 and stayed low. I ended up having to take two extra weeks off in addition to the normal time off. I'm now reduced to the 100 dosage. I talked with the pharmacist who said they are seeing about 50% of patients having to reduce dosage. She said a few people have been able to resume higher dosage after being on the lower one for awhile.
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My onc was in her words, overly cautious about the blood counts because this is such a new drug. I had weekly bloodwork for the first 3 cycles, then every 2 weeks. After 5 full cycles, now getting bloodwork every 3 weeks
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Ellelou - I did get stopped going through security wearing foob. The screener pulled me aside and discreetly asked if I had "tucked a little something inside"....Once I explained what it was, they quickly sent me on my way, but now I choose not to wear going through security and pack it instead and just dress to camouflage.
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My MO is following the protocol that Susan just mentioned. First 2 cycles - bloodwork bi-weekly. Now that I'm starting cycle 3, counts will be checked only once a month. And this is with a few very low counts. Just barely above the "danger zone." But my neutrophils stay at the bottom of normal, so I'm being kept on the 125mg dose.
As far as my TM's, I had a doubling before cycle 2 and just had another check yesterday. Up slightly still. My onc said they are seeing a rise in TM's in the beginning and then a decrease for some. I was so hoping to see a downward trend. So - I'll have scans in 3 weeks to see what's going on. I really want to stay on this treatment because I feel good with no se except the low counts. I'll keep on hoping for good results! Wishing everyone good luck.
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Hello all, just had my bloodwork and exam....hip, hip, hip hooray my TMs finally started to behave. DOWN!, just a bit, but DOWN. Took 6 cycles, but my onc was so confused because my scans were better. He said he had another pt. On Ibrance for 3 months with very rising TMs and great scans. There seems to be some ups and downs with this drug. As for bloodwork, I was having it every 2 weeks, but my onc said now they have all become stable and consistent so I will be going to once per month.
So excited, so gang hold on there seems to be some conflict with Ibrance. My onc said that's why they don't just rely on markers and look at a whole picture. His experience is wonderful.
Hugs to all...Myra.
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That's great news Myra... I've only had two cycles of Ibrance so far and my TM's have been up but now I'm feeling a little more hopeful. I'll get my first scans soon and hopefully they will be good ones! I am having minimal side effects from the Ibrance really and would like to stay on it.
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Great news Myra! So happy.
My scan is September 21. My TMs have gone down twice. I'm at the end of cycle 4.
My MO did blood work weekly, then every 2 weeks. Have another lab Thursday.
Strange that there is so much variability on TM responses.
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Great news Myra! So happy
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With everyone's posts about blood test every two weeks I am beginning to wonder about my Onc....I've just finished my 2nd week of 3 and am doing pretty well. But my first blood test since being on the Ibrance is not scheduled until the third week is done? Should I worry?
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I am on day 8 of my first Ibrance cycle and my only side effect has been a little nausea and lots of fatigue which does not help when trying to run after 4 little kiddos! I am so new to all of this that I have a hard time sorting out what is what! This is my first treatment, I was just diagnosed this summer. I know that TM is tumor marker, and I just had them drawn for the first time, but there is no where I can find what should be normal or at least a range? Is it just one of those tests that will be specific just to you and there is no normal? Sorry for the newbie questions! My onc is having me come back at the 2 week mark for bloodwork and then a PET scan at the 3 month mark, which seems so far away.
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my understanding of tumor markers is to not worry about "normal" range, but to look for trends. Up is not good news, down is. Docs have differing views on which TMs to use and how reliable they are. MyMO uses them, but believes symptoms and scans are more telling. I'm anxious to hear what others say.
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My onc uses them also and has stated that they need to be considered along with scans and symptoms. My onc also uses Circulating Tumor Cells (CTC) test. Not many oncs do that test, but I am all for additional ways to track this. The thing about TMs is that they are not always reliable for everyone. My onc relys on them greatly for me, since they have always been reliable. But not the case for everyone.
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My tumor markers are reliable also. Had them checked on Tues and my CA27/29 is now 58.6, was 64.1 last month and started at 203 in April before I began Ibrance
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Lynnwood that's great news. So happy to hear this. I hope we can all look forward to such a great response.
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My TMs have always been very reliable, but like your onc, Kaption, mine does not go on TMs alone. However, that said, I wish we had paid more attention to them sooner during a recent upward trend, because although I was not having increased pain and my March 2015 scan was stable, by the time my next scan came around in July, my TMs had continued to increase significantly and I was suddenly in considerable pain. Looking back now at the upward trend -- although I tried to chalk it off to normal fluctuations because I didn't have increased pain initially and my March scan had been stable -- it was by far the most reliable indicator of worsening bone mets.
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That is interesting dlb823. It does seem important to pay attention. My MO now uses CEA. She used to use CA 27/29. I'm not sure why. I used to be borderline HER2+ but when things got active again I had a new biopsy and I'm HER2- now. That's when I started on Ibrance.
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I'v been on Ibrance since May and faslodex since February., but the past few months Iv noticed that my nose always has dried blood inside. It always hurts so I always know when I have blood in my nose.
Why is my nose always bleeding? Does anyone else have this problem? Is it caused from my medication?
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Lynwood
Great results. Wonderful to hear!!! It certainly makes us all hopeful
Babs
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Good news Lynnwood!
Friends1 , yes I have bloody noses from time to time, but seems to have stopped the last few cycles. When u look up Ibrance you will see it is listed as a SE.
My onc does CEA and CA-15. This month after cycle 6 both finally went down. As I said previously my onc has another patient who has had very rising TMs for 3 months and improving scans. Some MOs don't even do TMs. It's the big picture that counts.
Have a good day all. Myra
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Starting my 4 th month on ibrance and Femara TM went down the first 2 cycles (started at cea 16 and ca-15 was 12 ) ca-15 went to 6.9 then 6.1 then the third cycle went to 7.3 and Cea went to 23 now cea 27 and ca-15 went to 7.3 but pet scan show great reduction Breast tumor is 1/3 the size and I had a met on iliac area of hip they can't see anymore and met on left condyle ( skull between ear an base of skull) has not gotten larger but they can't tell if it got smaller because of the glucose up take in the brain lights everything up but headache is gone. But I am worried about the TM has this happened to anyone else.
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friends, I am just on cycle #2, but what you're describing happened to me during my last week of cycle #1, then it cleared up during my off week. I would definitely mention it to your onc, just so he/she knows you're dealing with this listed SE.
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I think the plan is to start on Ibrance next week for me, is it hard to get it approved? Is this just approved for off trial use? How is everyone doing on it???
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what does SE mean?
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Side Effec
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Keetmom: I have had very few side effects from either Femara or ibrance (which makes me worry...Is it working???) I do have some fatigue going into my 3 week with Ibrance, but also started back to work full time, so my exercise regimen has suffered. Need to get back on that! I got a rather sore jaw for about a week, just felt like fatigued too. Also got some inner mouth irritation but switched to a soft toothbrush and mouth rinse and it is all better. Maybe a few joint pains but very minor. All in all I feel very well. I have my first appt with Onc on Monday since starting Ibrance so am anxious about results to say the least....Jury is still out on my onc. My first two appoinments she just impressed me as someone just going through the motions and really had no words of encouragement which was extremely disconcerting, and most definitely adds to my anxiety levels.
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Just saw my oncologist today. Finished 9 days of Ibrance and 3 weeks of Femara with no side effect either. Also, my white blood count was fine today. Hop
e it is working as well. Just got approved by PfizerRxPathways to cover Ibrance. My copay would have been $1,800 a month. I am 71 years old and still working. I am strong. Having bone mets in the vertebrae radiated next week. Been struggling with all of this since 2006. Getting tired. Have had liver, lung, and bone mets. Hope Ibrance works, believe me. I am so tired of chemo. I am usually very positive and strong. Sorry for being a little down today, although I've some very good news!
Had the first meeting of a breast cancer support group in my community this morning. Live in a 55+ "active adult" community. Amazingly, we have 12 members. The meeting was very positive and edifying So good to share.
Stay strong.
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Florence, you have every right to have those down days, never apologize for that, we all get it. I can totally understand that you are getting tired. But you have made a least one person today (ME!) feel hopeful and reenergized by the fact that you persevered through so much. You just cannot put a price on the value of that and I thank you! Stay Strong!
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Myra, are you saying your TMs didn't start going down until 6 months on Ibrance? Did they go up at all? Mine have been slowly but steadily climbing every month on Ibrance. I just started my 5th cycle. Scan last month showed no further progression, but ONC says just because you can't see it yet, doesn't mean it isn't there. Up is bad, no matter. He wants to switch me to Xeloda if things don't start to shift.
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Stef, no the first two months each one went up and one down, then 3 times up, now finally both down. Good stable scans with some regression, and I feel fine. As I said be fore he has another pt. Whose TMs have been going up consistently with excellent scans. He insists on the whole picture. He is an internationally renowned onc with many years experience.
Will he do another scan before switching you? Many onc's don't do TMs and some all different types. I get CES and CA15.
I feel good and my bloodwork every month has stabilized beautifully. Only still somewhat anemic. I have been able to cook, shop, play mah Jong and canasta and work part time like a normal person, like I told him, just slower
Myra.
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Hi, All,
Well, I'm feeling very tired (Ibrance, Faslodex, and Letrazole). My last scan showed some mets in the vertebrae. I saw a radiologist last week and am planning to radiate the affected area on Wednesday. I'm a little concerned and not sure that I want to do this. The spot is small but I can feel it. The radiologist was going to take a "wait and see" approach until I told her that I could feel it and could point directly to the spot in my back. They do a CT Scan and an MRI first (both in the same day) and a mold of the back. Obviously, they want to avoid the heart. Anyone have any experience with this?
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Florence,
I have had radiation to all lumbar areas in 2 separate occasions. Both times were done specifically to relieve severe pain. Both procedures did what they were meant to do. There was fatigue-that was my main side effect. (I also had radiation after my first lumpectomy to the left breast in 2005. Again, fatigue.)
Best wishes! -
Thanks, Kaption. Sounds encouraging. I am not yet in severe pain, just annoying at this point. But my feeling is that it's best to address it early.
I also had radiation (mammosite) after my first lumptectomy In 2006.
This forum is great!
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Florence, I'm not an expert, but there is a lifetime limit to how much radiation we can have. That's why RT for pain is usually reserved for severe pain that can't be controlled any other way.
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Personally, I wouldn't radiate unless the pain was severe. I worry about radiation hitting other parts of the body and causing side effects (gastric distress, etc). You said the pain is annoying not severe. It's up to you but maybe give the Ibrance some time to work if it is going to work?
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I coincidentally just asked my radiation onc about the lifetime radiation limit I had heard someone mention. He said that with the small, targeted amounts we get now there really is no limit. The only real issue is that one spot cannot be radiated more than once. So, you do want to choose what to do. Even with thatlimitation, there are techniques and choices.
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Thanks everyone for the advice. Will give this serious thought. Will let you all know what I decide.
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Florence I agree with the others. Unless the pain is severe I would not radiate. My onc also does not recommend unless there is severe pain. Radiation will lower your blood counts and with the Ibrance that could prevent a challenge. Since you haven't been on Ibrance maybe consider a wait and see approach.
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Florence, I am having another radiation consult tomorrow, I will let you know what he says about the risks. I will also have an MRI tomorrow, then a mapping the following day if I go ahead with a radiation plan. I had radiation twice already, and the 2nd time it stopped the pain in my hip area - it's still working, so I hope they can do it again for my upper back without side effects. This will delay my starting Xeloda, hopefully not too long.
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Florence, I agree with Cristina about giving your current tx a chance to work. I was surprised and disappointed to see lung damage from radiation (left side & axillary area in 2009) noted on my current CT reports -- something I had no knowledge of until I read it. Also, are you on a bone building drug? Just wondering if something like Xgeva might also help fortify the bone where you're having some pain.
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I didn't realize that about the radiation therapy ladies. I was just talking to my onc today about my arm. It's really been hurting me a lot. We don't really know if it's the cancer yet but she is having me do some x-rays etc... and mentioned the possibility of radiation. I think I will try to exhaust any other possibilities first for sure now. I also have annoying pain in my back and rib cage Florence so I definitely understand your need to make it go away. I've been living on a heating pad and using the topical patches. So far, that seems to help take the edge off.
I had a good talk today with my onc about my tumor markers since starting Ibrance. They had gone up initially but now they are stable. So, not going up or down. She says that is okay for now and isn't concerned unless they decide to take a huge leap up. She is confident that my TM's will begin to go down in the next few cycles. PET scan in a few weeks! Biting nails...
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Has anyone had so much hair loss from Ibrance that you decided to shave your head or cut it short? I'm loosing an incredible amount of hair and it has gotten SO thin.
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Good morning ladies, I am on day 15 of my first Ibrance cycle. Up to this point I have had minimal side effects, but last night had the palms of my hands start to itch and little bumps form?? Thoughts on if this is something I should be worried about?? Thanks in advance!
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thoughts on previous posts: radiation certainly has risks, but it is the reason I'm mobile right now.
Ashley, my hair (which is rather thin naturally) has thinned a bit more. But not enough to consider shaving. What has happened, that didn't even happen on Taxotere, is my eyebrows and eyelashes have thinned. Especially my eyebrows.
Mama2twins, I have had a few Itchybumps on my fingers. Looks kind of like individual poison ivy bumps. I've heard others mention bumps on their palms. Certainly worth reporting to your doctor. But, I think it falls under the "to be expected" side effects.
My first PET scan since starting Ibrance (finished 4 cycles) is next Monday. Very anxious for sure!
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Thanks for all of the advice on radiation. I have an appointment tomorrow for the CT Scan and the MRI in preparation for the radiation. I called the radiologist today and my oncologist. Oncologist is not in the office today but I got some good advice, off the record, from the nurse practitioner. The radiologist will discuss with me in the morning and then I can decided to go forward or not. My gut feeling right now is to go forward with the radiation. Presently I have mild discomfort. I think it may be best to stop things before they get worse.
I am also on day 15 of Ibrance, 125 mg. Only fatigue so far and some digestive changes.
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Florence, I have some small-4 I think, mets in my spine L3 area. They were really aching back in June and I have been on Ibrance and Letrozole since June and they don't ache as much now. I would estimate about only 1/3 of the pain as before.
I also have some age related degeneration (59yrs) in the same area that can be seen on the MRI and so it could be that that bothers me occasionally. But my point is, things are better now.
I agree with some of the others, don't do it unless you really have to.
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Florence, I was in a lot of pain when my Anastrazole quit working -- spent many days at home and a few in bed due to pain. Now that I'm on my second full month of Faslodex and 2nd cycle of Anastrazole, the pain is virtually gone -- unless I overdo it. I understand wanting to address your discomfort before it gets worse, but giving Ibrance a chance to work might mean you could save radiation and still have it available at a later date. And so far, I am finding Ibrance cycle #2 easier to tolerate than the first.
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Florence, I had my radiation consult today, and will have mapping tomorrow morning. This will be my third time having radiation, and I'm glad I have the very best person doing the job since he says it will be even trickier this time as he will have to radiate close to where I was radiated the first time back in 2009 (and you can't radiate the same place twice). I don't know how I'd feel if I didn't have complete confidence in my doctor, but my doctor is the very best expert on radiation.
Although the pain is in my right side of my back, it originates from the spine, and they will radiate me from both front and back, and it will most likely be for 10 days, and I may have a slight sore throat since it is the upper spine they are radiating, most likely there will be no other side effects ( though other side effects are possible, they are not likely). They want to stop the bone damage from getting worse since nerves can also be damaged if they don't. I have had a hard time lifting the laundry basket, the bundles, the iron pan, and just standing for a long time, so I feel like I need to get relief - Ellelou, by the way, great pic and what a cute baby, your back must hurt holding the baby, but glad you are getting relief from the meds! Hoping my the radiation works as well as it did last time (had it over a year ago in the lumbar spine region and so far that pain hasn't returned).
At first the nurse suggested the Xeloda might help the back pain, but after I described it, she set up the radiation consult, so maybe it depends how bad the pain is, whether they decide on radiation. The radiation will delay me from starting the Xeloda, so I hope it won't be too much of a delay, but they don't do both xeloda and radiation together.
Traffic was brutal getting in town today - traffic is 1/2 the battle, and it's impossible to predict, at any time of the day. The MRI was about an hour, and I forgot I was getting injected again, so I'm glad to have that over with, although it was not bad (just tired of scans). Good Luck with your radiation decision and hope they can help your pain.
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they did say stop the last pill, my neutrophils (?) were 500, supposed to be 4000, have been off for 11 days! Blood work this am to see if I recouped. Feeling good so guessing tomorrow dr will call and say begin cycle 2, day 1. I was fine until day 21! Thank you so much for your reply! Hoping the next cycle goes just as well for the first 20 days! Keep on keeping on my friends
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So so wonderful to hear cycle 2 is better
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it is a printed side effect of IBRANCE ...
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Myra it is so encouraging to read your report! Glad you are able to do so much. I have returned to work as a teacher, but am worried about blood counts and kids germs. Also, I thought I read that you cannot have a flu shot on IBRANCE, does anyone know if this is true
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wonderful to hear this encouragement , thank you!
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Piemaker, my onc gave a total go ahead for flu shot as well as shingles. I think I will still research more to see what others are saying about that. I too work in a school and we have already has a stomach bug going around. Last pill of cycle one tonight and my biggest SE has been a few days of aching jaw and teeth (so bad today) Also a few mouth sores which makes it hard to eat some things but a soft toothbrush and mouth rinse helped. I also feel like I am getting a little sinus issue or cold which is unusual for me. However, had a blood test and WBC is still good (3.2) to start second cycle. BUT now my insurance is jerking me around about next round of Ibrance. Hard to believe how much I have paid into it over the years and they try to skirt out when I need them most. I am pretty sure though that my 2 affected lymph nodes as well as breast lump have shrunk! So pray it's working on liver too. Scans coming right before Thanksgiving.......Best thoughts to all
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My onc said they would be giving me the flu shot themselves
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Same here. I asked my onc last week if I should get the flu shot and she said yes - absolutely.
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I think it's important to time any vaccines for when our counts are the highest. In other words, be sure you don't get it if your neutrophils are extremely low.
The shingles vaccine is a live vaccine and some people have actually gotten a mild case of the shingles after getting the vaccine. I would be extremely careful about the timing of this one if you decide to get it.
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this is slightly off the Ibrance topic. I still have my Power Port in and have started doing yoga again. Feels good to exercise. But, does yoga hurt the little tube running across my collar bone?
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Deanna, I agree with you. I am hesitant to get the shingles and plan to research more first. I have a second opinion appt with a major cancer center and a BC Onc rather than just my Gen. Onc. I DO NOT want to get shingles on top of this! Thanks!
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Preventing shingles is a very good idea if the vaccine is OK to take - Shingles is one thing I really fear, since my mother had a very bad case, and it can really cause terrible pain for a very long time.
Question - does anyone know where I can dispose of needles now that I am on blood thinner twice daily due to the scans showing blood clots? The nurse told me CVS, but CVS wouldn't take the needles. I can bring them back to the hospital at my next appointment, but I'd rather get rid of them now if I can.
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Hi ladies... My MO ordered a MRI to check the 2 liver lesions that I have based on the fact that my once very palpable 2cm lump in breast was almost undetectable. I knew Ibrance was working. Got my results posted in 3 hours. Liver lesions are smaller and no progression. My MO didn't feel the need to order another PET or CT yet. Onward to starting cycle 4 today, still at 125 mg.
Monika
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Wonderful, Monika! So happy for you
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Great news, Monika!!!! I'm so happy to hear your good scan results!
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Monika! Great news about your scan! Looks like Ibrance is the drug for you! Congratulations
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Great news Monika. Here's to continued success on Ibrance.
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Yes Monika, that is so great! I hope the same happens for me at my next scan.
Has anyone had Ibrance Se's of super sore jaw and teeth pain??? This seems to be the only aggravating symptom luckily but man it's wearing me down. Tylenol helps but not for long.
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Great news Monika! I just started cycle 3 and will have my first scan in a couple weeks... the waiting is so nerve wracking so I know you are relieved.
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Monika,
Congrats on such great results after only 3 cycles! Hope the good news continues for a very long time.
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Kaption... the only thing I was told about the port is to try to avoid strong/forceful upward motions. The area around my port tends to get sore a lot. I have no idea why... it's irritating.
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fantastic Monika! Awesome news.
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Great news, Monika!
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Florence, are you taking ibrance, letrozole AND faslodex now? My mom is told she is going to have ibrance and has to choose EITHER letrozole or faslodex but not both. Just wondering if your oncologist has a different approach. thanks.
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Meghar, if I had a choice, I'd choose letrozole. Everyone is different, but just wanted to tell you that Faslodex gave me lots of itchy red bleeding bumps on my arms and legs, but I had no side effects for the letrozole. Hope your mother has good luck with the combo.
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Monika great news!!! I too hope to hear good news in a few months!
Ibrance side effects- thinning hair, yes, it's coming out, not enough yet to buzz cut it. Itching- yes, in my feet, hands and scalp, my it drives me a little crazy time to time. And sore teeth- yes, did not know that, I had it, rubbed some Sacred Frankincense oil on it several times per day and it went away.
Holly- can you go to CVS and buy that red bucket for needles and just keep it at home. Or just use an old laundry detergent bottle that's empty and put your needles in there for now.
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Well, fellow Ibrance ladies. I decided to accept the doctor's recommendation and do the radiation. I had my preliminary CT Scan and MRI and am all marked up in preparation for the first session at 7 a.m. Monday morning. I have only 3 very small spots on the vertebrae. I had some vertebrae involvement 5 years ago, but chemotherapy took care of that. I will have 5 very light radiation sessions. I am not in any pain right now. They say that it is most likely just arthritis that I feel. However, it is best to address this now while it is very small and I am not in pain.
Had my WBC checked today, and I am still fine. My oncologist will check one more time before I start the second cycle. If I'm still good, I'll stay at 125 mg. If not, I'll drop to 100 mg. The biggest issue I have is fatigue. I am not having any skin issues, which is usually very common for me. For example, I couldn't handle Xeloda. My hands and feet were so bad. I couldn't hold a pen, and my feet were still peeling sheets of skin weeks after I stopped.
I have been at this since 2006; lung mets discovered in 2009. Liver in 2013. Now bones. Liver is clear. Lung only slight involvement. Keep on going! That's my motto. I work 4 days a week, mostly from home as a business analyst for a major pharmaceutical company. I am 71 years old but do look it or act it, if I do say so myself. I have confidence in my oncologist. If I didn't, I should go somewhere else.
I have been on Faslodex for several years. When I started Ibrance, my doctor added Letrazole and didn't stop the Faslodex.
Best to all..
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Great news Monica. So happy the Ibrance is working for you!!!
Babs
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Monica,
Yea!!!!!
*susan*
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Monica and Florence, that is great news! Florence, interesting that you are on both the letrozole and Faslodex together with the Ibrance. Good luck with your radiation.
CJanet, thanks for the needles advice, I have plenty of laundry detergent, so that is good to know.
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Monika, that is great news you are doing so well!
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great news Monika, I also get the itching and sore mouth. I found if you coat the ibrance in something like chocolate icing of marshmallow cream you mouth doesn't get near as sore. Marilyn
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PET scan tomorrow after 4 rounds of Ibrance and letrozole. Nervous and hopeful. Tumor markers have been going the right direction. We'll see.
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good luck with your scan Kaption! Understand the anxiety completely! It's good your tumor markers are going in the right direction
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Good luck Kaption. Myra
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Best Wishes tomorrow, Kaption. Hoping for great scan results for you. Those declining TM's sound like good news is coming!
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thank you all
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Just adding my best wishes for a scanxiety-free scan tomorrow, Kaption! I'll be thinking of you!
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Hoping you have great scan results Kaption!
Babs
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All GOOD scan news from this morning. This is from my online results: essentially all lesions (mine are all bone mets) are stable or actually reduced. I'll get details on Thursday.
Yea Ibranceland!
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Wonderful news!!!!
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Yeah Kaption😌
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Great news!
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Great scan news!! Congratulations!!
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Thanks everyone! Great news Kaption!! I found out that the two liver lesions I have both decreased in size by half! These red itchy bumps are so darn annoying and they just keep popping up left and right.
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I am very happy for you Kaption, that's a really good news.
I'm going to University of Miami (Deerfield) in early October to see my doctor and for a PET scan. I hope I get good news as well. Is there any one from Ibranceland around there( pompano beach, Fourtlaulade, Deerfield) that would like to meet for a cup of tea?
Cheers
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Great news Monika and Kaption! WooHoo! Florence I love the news that your liver has been clear.!
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Hi theziz, I also go to UM Deerfield. Do you see Dr Vogel or Mahtani? I would love to meet you if I am home. PM me or just write back here. Myra.
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So happy for the good news here lately! It seemed for a while like we had so many people progressing on Ibrance, I'm enjoying all this good stuff immensely!
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Great scan results!!!! Congratulations to all of you!
*susan*
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I'm so happy for everyone getting good scan results!!!! My scans are coming up on Monday. Hope to keep the good news flowing!
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Yes, Hummingbird-keep the good news coming!
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Great news Kaption and Monika!!!!!
Hoping to hear similar results from Everyone here in Ibranceland!!!!!!
Babs
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Hi, I see Dr. Vogel mainly but I've see Dra. Mathani as well
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Hi, I see Dr. Vogel mainly but I've see Dra. Mathani as well
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I'll be there from October 7 to October 13. I hope I can meet you.
Cheers
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So happy to hear all of your great scan results! yay!!
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Just had CA 27-29 tumor markers done after first cycle of Ibrance. TMs started at close to 1100. Dropped to less than 700 after first cycle. Hope it's not a lab error - LOL.
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Wow Moissy that's good news! I hope mine drop by this Monday. Min went up after the first round...But hope is just hasn't had time to show a difference yet. Have a blood draw Monday to check WBC again. Had some mild mouth issues before I took my week off and start up round two today. I hope the teeth pain is really a mouth issue and not meds, as it was excruciating but let up after I stopped the Ibrance??
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Moissy, what great news!!! That's about the biggest drop in TMs I've ever heard of in one month!
artist, I've also had some teeth aches since being on Ibrance. I'm just on my 2nd cycle, but it started mid-cycle, just as it had last month. So I'm certain it's an Ibrance SE. Deanna
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Artist - I think it's not unusual for them to go up first before they come down.
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I've had an occasional aching teeth feeling, too. It seems like it was after eating something sugary. Brush, rinse, repeat.
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Moissy, GREAT drop in tumor markers
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Moissy
Wow that's a great drop in TM's!!!!
Babs
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Yes Deanna, i too am pretty sure it's the Ibrance as it let up during my week off. It's weird though that the tooth I need work on is the one that kills the most....I have read that my TM's could go up for awhile so will wait it out and hope for the best! Shetland, I agree to jump on the brush rinse, repeat for those teeth.
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Moissy,
Congrats, that's great news!!
Alissa
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Thanks, everyone. Obviously I had a pretty high TM number to start with (1100). I have really appreciated everyone sharing their experiences. I was dropped to 100 dosage for second cycle. Blood counts are better this time, so hoping for no more delays.I had to sit out some extra days after cycle one due to low counts. Thanks for letting me share your tour of Ibranceland. Wishing you all good results!
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After 6 months on chemo earlier this year (16 rounds) my onco put me on Ibrance to take a break from chemo. I've just completed 2 rounds of Ibrance, but my tumor marker numbers have actually doubled since I started taking it. Obviously not working for my situation, so my onco thinks I might have to go back on chemo again, for the 3rd time in 5 years. Hope Ibrance works for you, but you need to monitor your tumor markers very closely. Good luck to you in this journey.
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Slevyallen are you taking the Ibrance with Femara or with Faslodex? Just wondering if your onc is considering switching your Ibrance combo.
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Hello, friends,
Just wanted to update to say I am joining you on your Ibrance + letrozole journey starting tomorrow.
My doctor told me to take it in the morning after breakfast.
He also said to expect a huge drop in white blood cell count two weeks after starting treatment, and another huge drop a few weeks after that.
He also said to expect nausea and 5% chance of blood clots. He said the main side effect was horrid fatigue.
I'm coming to this point after doing Xeloda (stopped due to GI side effects and severe chest pain) and Abraxane (horrible neuropathy which created a near paralysis in my feet and affected my balance). I've been off Abraxane for 5 weeks now, and am coming onto Ibrance from a good tumor marker position and an all right scan position. The Abraxane weakened my body considerably, and caused liver cysts.
I've tried Arimidex in the past and it has not worked for me at all (water in the lungs, tumor markers over 1100, just horrible progression of disease). Here's hoping Ibrance + Letrozole work better for me.
It's a new drug, so I think it's super important to share my experience with others. Please let me know if you have any questions.
Thanks!!
Sarah
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Hi Sarah. Welcome. I also take Ibrance/Letrozoie right after breakfast. I'm almost finished with my third cycle and have had no nausea at all and no fatigue. I don't know why your dr. told you to expect horrid fatigue as a main side effect! Yes - most of us have experienced a big drop in WBC, but many have been able to stay at the 125 mg dose or just reduced the dose. So try not to worry. I'm finding this combo to be very easy to tolerate.
Good Luck and best wishes for a long success on Ibrance!
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Sarah, I am on my second cycle of Ibrance (with Faslodex). The first round, my neutrophils had dropped significantly enough at the end of the cycle that I had to wait an additional 6 days to start my second round. They were never tested mid-cycle that time. This round (#2), I had to have them tested mid-cycle (it was actually Day 15) because I needed a tooth extracted yesterday, and surprisingly, they were fine -- as high as they had been when I started round #2.
Just sharing this because even though we are told what to expect, we're all a bit different. I'm also hoping my experience means my body is adjusting to Ibrance and maybe I won't have as big a dip at the end of the cycle this time.
Good luck, and hope Ibrance + Letrozole turns out to be a great drug combo for you, and much easier than your recent chemos! Deanna
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Hi Sarah - Welcome! I am another who has had little problem with side effects. No fatigue. No nausea. I was dropped to lower dose for my second cycle because of low blood counts and had to wait out some extra days for them to recover. But with the lower dose, I have really had no side effects at all to speak of and counts are good so far. Good luck and wishing you good results.
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welcome Sarah. I did find being in the Ibrance a little fatiguing, especially the first few cycles. The fatigue is from the low white blood cell count. It does improve. I take my Ibrance after dinner. That way if it makes me tired I just go to bed early. I find if I take it in the am, I always need a nap. Good luck. It should be exponentially easier than some of the other things you have been on.
Stefanie
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Hi Sarah, welcome! I am on my 6th cycle of Ibrance and am tolerating it well. I take mine after dinner because that is usually my biggest meal of the day. I have had zero nausea. I have had some fatigue but certainly not horrible. My dose was lowered to 100mg after the first cycle due to low counts but never since then.my onc tested my counts weekly for the first few cycles, she is confident now that I am stable enough in my counts to have them checked every 3weeks now. I have responded well, tumor markers have gone from 203 to 58
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Hi everyone, I haven't been posting that regularly lately, but I've been popping in to catch up and so happy to see so many of you with good results!
Unfortunately, it looks like Ibrance isn't going to be "the one" for me. After almost 5 months of it with various breaks for WBC and lower doses, my latest US shows tumors getting bigger so my onc suggests we call it a day. I'll be starting Afinator in a couple of weeks, hoping that one will do the trick and be what I'd hoped Ibrance would be (this feels so much like a bad dating story, lol!).
Wishing everyone great success and a long and happy "relationship" with Ibrance!
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Hi Ibrance girls,
I hope you are all doing well.
I am on my 4 cycle of the combo Ibrance/letrozole and I get monthly shots of zoladex and xgeva.
At the beginning of the treatment with ibrance/letrozole I felt very tired and dizzy but it has gotten better.
I'm athletic and I love to do exercise especially run (it is my escape) and I can feel that I'm not the same. I get tired easily. Playing tennis I have to take more breaks and I sweat more now. I don't pick my kids toys up all the time like I used to do.
The other side effect that I feel a lot is nausea.
My WBC are better now.
Cheer
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Hello, Sarah. Your doc is just a ray of sunshine, isn't he?
Lynwood, great news on your TMs!
Roses, good luck on A/A. I hope it will be Mr. Right.
Theziz, I hear you. I waver between saying "I can't do what I used to" and "I can still do stuff as long as I rest in between". I think the glass half-full one is probably best.
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Sarah, I am very new on this whole trip so my only experience so far is Letrozole/Ibrance combo. I haven't had any bad SE's at all. The first week I was a little fatigued and had some lightly sore joints especially my jaw of all things. Also my gums felt a little inflamed. No nausea at all. A couple of mornings I woke up with a slight weird sinus headache which didn't last long. I just had a week off and now am on my third day of round two and I feel perfectly fine....I will have a new blood test Monday to see where things stand.
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Roses, sorry to hear Ibrance isn't the right one for you. I know it's so disappointing when we have to move on to another treatment. Hope you have a long success on A/A, with minimal side effects. Good Luck!
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So sorry Roses to hear that Ibrance did not work for you. I pray the next drugis YOURS! Best wishes!
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Hi Sarah
I am about to start my 8th round of Ibrance/Letrozole. In the beginning I was very fatigued-but I was also commuting 3 hrs per day to work. Two months ago I moved closer to my job and what a difference!!! I've had some SEs that come and go-runny nose and achy limbs- but all in all it's been relatively easy. I hope you do well on the combo!!!!
Babs
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Yes, my doctor is a bit of a rainy fellow.
A few months ago he told me to get my POA on file and my will in order, as I only have two years left to live. He said that breast cancer spreads from the breast to the spine to the lungs (all of which have happened to me), and then to the liver, kidneys and brain.
So I freaked out a little when last week's scan showed a cyst on my liver, since that's "the next step".
He also said that as the cancer spread to my pelvis, if I couldn't walk by December, I would never be able to walk again and would be in a wheelchair forever. That was very upsetting also.
I can't decide if my doctor's honesty is refreshing or soul-crushing. For all his Debbie Downer habits, though, he is a good doctor. Certainly the best where I live. If I wanted to change, I'd have to change hospitals as well, which I am reluctant to do at this point.
Thanks for the moral support! After the long verbal disclaimer, I've been stressed for the past two days. My first dose was this morning. I hope all goes well and all will be well with my scans and all. Time will tell.
Enjoy the sunshine, friends!
Sarah
PS: if you have severe neuropathy like I do, consider soaking in magnesium (1/2 c epsom salt in 1 tub of bathwater) for a half hour a day. I'm finding it a relief. Will see over time if it regenerates nerves the way it's supposed to.
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Sarah, we each have to make our own decisions about our docs, but if I were in your situation, I would run to someone else and never look back, unless you want to be dragged into his self fulfilling prophecy. From what you've told us, he's a total downer with no comprehension of the mind-body connection. He's also telling you he doesn't have high expectations for you or himself. You need only to read more here on BCO to find many women outliving by many years those outdated statistics and ridiculous predictions. IMO, shame on him!!!
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Sarah, I am really sorry to think that your onc would be so pessimistic! My onc is very optimistic that people with bone mets can live for a very long time. She says that even though we are not curable, we can "knock it back " for quite awhile. She is very excited about Ibrance and the results they have been seeing
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Sarah,
Ditto to what the others have said. MBC can be controlled. There are plenty of success stories on this board!
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Sarah, I would heed the advice of these last 3 women's comments. They have been through a lot and are very smart, very well informed women. Deanna's faith in the mind body connection has especially impacted how I am trying to navigate through this ordeal and I agree with her philosophy. I do not believe that anyone can say with certainty how things are going to unfold. Give yourself every benefit of hope and belief that you can persevere through these rough times. You may be very surprised.
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Sarah,
Just to add a little personal experience. I was diagnosed 2 years ago. All bone mets (still only bone mets). I could not walk for a few weeks initially. I even went to my first radiation treatments by medical transfer on a gurney. Two years later some mets have reduced and I'm taking yoga. Everyone is different, but please don't give up.
I read a blog by a man with metastatic colorectal cancer which he labels "currently incurable." And he's a cancer researcher. Ibrance is new. New treatments all the time.
Hope
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Sorry Ibrance isn't working for you Roses... I hope your next treatment plan is more successful.
Sarah... Your oncologist seems to be someone who sees the glass half empty instead of half full. I don't think I could tolerate such a pessimistic onc... I hope you aren't taking everything he says to heart. I have mets in the spine and my onc has said nothing to me about it spreading to the lungs or anywhere else because the truth is they really can't predict where it will go or if it will at all. It is an unpredictable disease yes, but it's also a take it one day at a time disease.
On the topic of Side effects: I have had extreme fatigue from Ibrance. No nausea though... my appetite hasn't really changed. Same as everyone else my platelet counts dropped pretty low but not dangerously low. I am pleased with the low number of side effects and hope I will be able to stay on it. Scan day is on Friday... hoping it shows good results.
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Best wishes Chatty, We will be thinking of you! I'm so sorry this one isn't for you Roses. Wishing you the best on the next.
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Roses - Good luck with your new treatment. Hope it gives you a great response.
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Hi friends - Just found some info on Oncolink that may be of interest. Myra - I know you mentioned a few pages back that your tumor markers had been up before down, and you ended up with a good scan. Linked info below indicates that up to 30% of us will still have elevated markers for 30-90 days after a particular treatment--even if the treatment is being effective.
Although tumor markers are not reliable for all of us, if they are for you, you may fall into the 30% mentioned in this info. Both CA 15-3 and CA 27.29 tests have this disclaimer in the last column.
Scroll down to the particular test your onc uses. I know not everyone follows TM's, but if your onc does, you could be part of the 30%. Wishing everyone a good week!
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Hi all,
I was stage IV at diagnosis and recently reached an NED state (ACT, liver ablation, mastectomy). I have started on letrozole and we are considering adding pablociclib. I am curious if there are others have used this combination when in an NED state to prevent recurrence.
Lisa
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Not actually a reply. Stage IV Met bc.
Original diag and aggressive treatments 2004.
Ibrance/palbociclib + Letrozole since April 2015 5-mos now. Changed from Denosumaub + Anastozole + Xgeva
The side effects have become intolerable. I believe they are from the Letrozole--daily dose nearly 3 times the Anastrozole. But, I am not positive. All side effects increasing.
Depression, lethargy, inability to think, extreme weight gain, chronic insomnia, neuropathy big toes and big toe nails, hair loss and brittle/breakage, mood changes. In the past month, my pressure and pulse have gone through the roof. I have aged 10 years on 5 months--from super woman to old lady.
My blood tests re the Ibrance are all great
Again, I believe my problem is the Letrozole.
A deal breaker for me
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Elle,
Has your doctor considered the monthly shot of Faslodex instead of the letrazole? I found Faslodex much easier to tolerate than the AI's.
*susan*
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Ibocken, that's me. NEAD with normal TMs after taxol and remaining so for seven cycles of Ibrance + letrozole so far. It feels like a long time but I guess it isn't really. My onc and I are hopeful. I hinted at dropping the Ibrance (fatigue) but she and dh vetoed that idea quick. Ok I will adapt.
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elle777, welcome to BCO, and so sorry for all you are going through. Have you looked for alternatives?
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Susan
You Rock!
I was on the Faslodex until the change in April.
Along with Xgeva and Anastrozole. They were fantastic. No side effects. 20 lb weight gain, hair loss, depression etc since that change 5 months ago. I asked about changing back to The Faslodex and Anastrozole in an email and was told it could he discussed at my next appointment That appointment, finally, is next Wednesday. It feels like I am swimming upstream. The "depression and lack of sleep" makes driving the 100 miles each way seem futile, and dangerous. Bad mental state.
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I am almost halfway through cycle 4 and my fatigue is serious. I am still working full time as a high school assistant principal and I am having a hard time keeping up and am super anxious for kid germs. I also am noticing that I am very forgetful now which worries me. While Ibrance seems to be working for me, I have very little energy to the things I used to love to do. I honestly could sleep all day I am so tired. Starting to look into options with regards to work.
Monika
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Moissy, thank you so much for thinking of me. This month I finally had a very modest drop in TMs.
Elle777, so sorry for the awful SEs you are experiencing. I had a lot of fatigue, but I am on my 7th cycle and I am having a lot of my energy back. Platelets are good and I have graduated to blood counts once per month. I have found the generic femara by Teva has made a huge difference in SEs. See if your pharmacy will allow you to request that generic and see if it helps I also take a huge amt of supplements:
Astralagus Root, Ashwaganda, Ester Vit C, Vit D, Maitake Drops and just added Pumpkin seed oil which seems to also be helping with energy.
I was able to shop for 3 hrs 3 days in a row. Hope this helps. Myra.
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God Bless, Myra
Actually, I guess I have finished 6 cycles? Brain mush. How did you determine that amazing info re Teva? I stopped the Letrozole a week ago, and despite changing nothing else have lost 6 lbs.
I question that no dosing adjustments are made regardless of "size" (with Letrozole)
You are an amazing lady! My treatments mirror yours, except my journey began in 2004.
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God Bless, Myra
Actually, I guess I have finished 6 cycles? Brain mush. How did you determine that amazing info re Teva? I stopped the Letrozole a week ago, and despite changing nothing else have lost 6 lbs.
I question that no dosing adjustments are made regardless of "size" (with Letrozole)
You are an amazing lady! My treatments mirror yours, except my journey began in 2004.
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Elle, I had heard Teva was the premier generic drug and a friend of mine confirmed it who is a pharmacist. I asked my CVS pharma to order it for me and they did since it is still a generic and I could not believe the difference. He told me that each generic drug has different fillers in them and you may be allergic or susceptible to one or the other.
Good luck, Myra
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Myra
Again, Thank you.
I am dumb founded. My side effects have heen so bad, from day 1, that I discontinued the medication a week ago, and canceled my Wednesday appt at my world famous medical institution.
I am equally as dumb founded that this information would not be primary with my physician. I checked since your last message and learned that my "letrozole" is Sun Pharmaceuticals, filled at the Parmacy on-site at the medical institution.
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Elle I had a similar very bad experience with a generic from Sun Pharmaceuticals with a different drug. I was taking Metformin that was by Sun Pharmaceuticals from India. I also had to discontinue taking it my side effects were so bad. I am still on Metformin, but another brand and I have NO problems.
So yes, I agree with Myra, Teva is one of the best for generic drugs. I learned that for generic drugs the active ingredient has to be within a certain standard (even there a small variation is allowed) but that the inactive ingredients can vary widely from different manufacturers.
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Pearlady
Thank you, also!
The ingredients in Sun Pharm include 3 items not in the Teva. Again, dumb founded.
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Yes Elle it was a learning experience for me also. I have been fortunate enough to take Femara and not a generic. But when I do take generics I try to get the Teva whenever possible.
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Wow, the learning just goes on and on. Who would've thought about the fillers of the drug variating????......You ladies ROCK! Great information for the future.
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Will be having my scans Thursday am. These will determine if the Ibrance/letrozole is working for me or not and if my ca has spread more. I'm on cycle #8 My TMs went up for 6 mos and then finally started going down. Last scans were not definite-ca areas slightly larger and 2 hot spots on my spine which were inconclusive for ca. Also when I was hospitalized last month for cellulitis an MRI showed a mass in my left breast. I am a nervous wreck. These scans will determine so much!!!!! Wish they were over and that I had the results already- bad or good I rather know what I'm dealing with. Sorry for the rant just so anxious!!!
Babs
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Babs,
Prayers for good news on scans with good, clear information. Prayers for quick results too
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Of course you are anxious Babs. We will keep you in our prayers and send happy healing energy your way. Fortunately, we have people on here who can provide a different perspective. I saw my doc today, and we are going to do another cycle and then a scan. After that, I may be trying the Ibrance. Yippee.
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Babs - It's so hard waiting on scans. Just said a prayer for you as you await the next scans. Here's hoping they bring good news for you and some peace of mind. Hugs, Moissy
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Best of luck Babs! Myra
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Babs,
Best thoughts as you head toward a scan. Hope the news is good; no GREAT!!!!
*susan*
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Babs we all definitely can relate to the anxiety. Praying for you that the scans reveal only good news!
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Hi ladies, onc office just called me back. I am on day 2 of my 2nd cycle of Ibrance. All my bloodwork looked good for me to start 2nd round despite being very low the week before. She called to tell me my tumor markers went from 36 to 42. So up. I know alot of you ladies had it go up before down. Talk about anxiety now!!
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I have a scan tomorrow afternoon. Been having increased pain and feel there's a bump in my neck as if the tumor is growing. I have an appt with my onc on Friday so we will see what the plan will be.
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Babs,
Any tests are such an anxiety producing time. I'm sorry we all have this mental madness to deal with. We'll be thinking of you with best wishes for some good news.
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Babs and cjanet, thinking of you both. Best of luck on your scans. We all understand the anxiety.
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Cjanet, I'll be thinking of you these next few days having scans and waiting. Prayers for good news.
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Cristins
Hoping you have great scan results
Thank you everyone for your support. Will keep you posted!!!!
Babs
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Babs and Cristina ~ I will be thinking of you both tomorrow -- sending strong, positive, calming vibes!
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Will be saying a prayer for all undergoing scans and for all dealing with pain issues and progression. God help us all
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Wishing everyone good results on their scans... mine are tomorrow... I haven't slept much this week worrying. They called me today and said I had to come in for a pregnancy test??? Why in the frickin' heck do I have to do this every time?? My husband had a vasectomy 15 years ago. I AM NOT PREGNANT!!! arrrggghhhhhhhhh Have to make a special trip to the hospital just to pee in a cup... so stupid.
Anyway... gotta' do what you gotta' do...
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Babs and Cristina - Hope all went well today. Have been thinking of you all day.
Chatty - Hope your scans go well also. I've never heard of having to do the pregnancy test thing before a scan either!
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Scans are done-now the waiting begins! I'm hoping to get the results tomorrow but the hospital said it might not be until Monday-really!!!???!!!
In the meantime, one of my TM went down 0.6 and the other went up 26 pts-not very good since the TMs have been a good gauge of what's going on for me.
On Sunday, I'm doing my annual walk for Support Connection. It's a great organization that offers FREE counseling and support for those with breast or ovarian cancer. My sister used their services 17 years ago when she had ovarian cancer (she is still cancer free!) and I used their help when I was diagnosed and periodically thereafter.
If anyone wants to contact them you can at 1-800-532-4290
Chatty-good scans tomorrow!!!!
Babs
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has anyone had your blood pressure go up a bit? Mine has always been good, but is now occasionally "borderline.
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So many scans coming up and results pending! I haven't commented a lot, but I am watching and hoping with all of you.
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ever since diagnosis, mine has been much higher!!
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Babs, I had my scans done on Monday. The results might be available tomorrow on the patient portal but I don't see my onc until next Tuesday! I know - the waiting is terrible!
Cristina, Chatty, Babs and everyone waiting for scan results - thinking if you all and hoping for great news!
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Hummingbird
Waiting rots!!!!! Hope you get great results!!!
Babs
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Just checking in. I haven't been on for a while. I had my labs and CT scan done today. I don't get results until next Thursday. Last time my tumor markers went from 43 to 46, so not a huge increase but enough to make me worry. Prayers for everyone else having scans and that are not feeling well.
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Kaption, my blood pressure has gone up steadily to borderline as well. I have always had low BP. I know it is one of the meds, either Femara or ibrance. With that I get mild "pressure" headaches. My onc had me get a baseline EKG yesterday....Good luck to everyone on scans this week!
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Thanks artist. Guess I'm on my way to adding blood pressure and cholesterol meds to my list of what I take. Just read that letrozole can raise cholesterol. This is so frustrating because I try to eat so carefully and thought these were 2 factors I had a little bit of control over. Grr...
Oh well, big picture: success to all those getting scans this week!!
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Hooray! My TMs have finally made a turnaround after two months on Ibrance+Faslodex. They're still at 297, which is only down 10 pts. from last month, but the first downward turn in many months after a wild climb to a high of 307 last month.
My one concern is that my Alk Phos keeps climbing significantly. Thankfully, someone mentioned elsewhere that this can be a med SE. Not sure I like that, but will ask my UCLA onc about it when I see her next week. Anyone else dealing with this and thinking or have been told it's due to Ibrance or Faslodex?
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Congrats Deanna
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Congratulations Deanna! So happy you had a drop in TMs! I had an issue with my alk phos climbing when I began treatment, at one time it was in the 400s. I was on Letrazole, Ibrance and Xgeva, my onc stated it was from the meds, most likely the Xgeva but could be from the others. Last month for the first time it was in the high normal range. My onc also told me to expect my TMs to go up before they go down, this did not happen to me, I had an immediate drop but I believe others here have had a rise before a drop
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Well, that's concerning, since my Alk Phos was 444, and I haven't started Xgeva yet (long story), but am slated to this month! This definitely goes on my list of questions for my UCLA onc!
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Hi All
Sorry to say Ibrance/Femara didn't work for me. Based upon the preliminary report the scans showed more areas in my bones,an enlarged and hot lymph node in my right underarm and now a spot in my liver. And my TM shot up a lot for me(26 points). Meeting with MO Tuesday AM. Undergoing liver biopsy 10/15. Not sure what drugs are next. May go into a clinical trial. Right now more unknown than known. Very scary time!!! Don't even know where I belong so I'll stay with my friends here until I find a new home
Babs
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Oh, Babs, I'm so so sorry, and almost in tears after reading your news. (((Hugs))) and know that you are and will be in my prayers.
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Oh, Babs - I am so sorry to hear that news...That is really a disappointment
Please do stay here on this thread and let us know what you find out on Tuesday. Sending a big hug your way....Moissy
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Babs so sorry to hear your results. Best of luck to you with your new tx and tests. Myra.
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Babs, same here - very sorry to hear about your results. Want to wish you good luck with your tests next week. I'm hoping that you have a great and long success with your next treatment. Please keep us updated.
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Babs, so sorry that this is not the combo for you! I'm sure your onc will come up with a treatment that will knock those mets back. Hang with us for as long as you want
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Babs,
So sorry to hear! Sending you hugs and love! I pray your onc finds another combo that works!! Thinking of you!
Monika
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3Holly in Fl u can exchange Sharp container at local fire station. I took Ibrance for 1year through clinical trial. My TM never went down, I ended up on lowest dose 2 weeks on 2 weeks off. Very disappointed it didn't do anything for me. I only have bone mets.I have had radiation to both hips recently. Which seemed to help my pain. My PET Scan showed marked progression. I also took flu shot 5 days before Scan and had to cancel due to extreme pain in my left femur & ran a fever. Long story short time to look for new treatments. Any one here ever heard of Quadromet IV for bone mets? I am looking into this but would like to hear of anyone else's experience. Thanks. su
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So sorry Babs. Please do stay in our discussion and keep sharing. I pray you find the right path for you!
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Babs, So sorry for your news, but it looks like there are still many tx's for you to try, and hope the next one will be THE one that has you dancing with Ned. Will be holding your hand in spirit on the 15th, I would (will) be afraid of liver biopsy too.
Sue2009, Sounds like you got some crappy news too. So sorry. Glad the rads were helpful for your pain. Maybe start a new thread with your Quadromet question so you get a wider audience. Hope the next tx is good to you.
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Thanks you all for your thoughts, words of encouragement, hugs and prayers-they really mean so much to me!!!!!
My MO sent me info on 2 clinical trials plus info on a shot I'll be taking monthly-prolia/xgeva
One study is researching different strengths of GDC0810
The other is for Faslodex and a placebo combo or a combo of Faslodex and Taselib.
Does anyone know anything about these drugs. I know many of you have taken Faslodex by itself- any insight would be appreciated.
Thanks so much!!!
Babs
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Babs,
Sorry it has taken me so long to join the chorus of disappointment. I have having some significant fatigue issues, and my job is getting what energy is left.
I was on Faslodex for five years, of which at least 4 3/4 yrs I was NED. I found the side effects to be much easier than Ibrance. I know nothing about Taselib so can't help with that one. My casual calculations think that Faslodex doesn't work for a large percentage of people, but for those that respond well, it works for a very long time.
If you want to PM me about Faslodex, feel free. And of course there is a comprehensive thread on this forum that can give you a wide range of the experiences.
Best of luck on whatever choice you make.
*susan*
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I'm sorry it's Taselisib
Babs
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Babs - I've had three Xgeva shots so far. I started on that just before starting Ibrance/Femara. I did not experience any negative side effects from Xgeva. They told me that I might feel flulike symptoms afterward, but it has never happened. My hip/leg bone pain went away almost entirely after I started the Xgeva. You do have to be aware of calcium levels with it. So if you aren't already taking a calcium supplement, you may need to. So glad there are some clinical trials of interest! Hope you will find something that knocks it out of the ballpark!
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Babs, I'm sorry to hear about progression. Not the news we wanted. The taselisib you mentioned sounded familiar so I did a search. It was LindaE54 who posted at the end of August that she was considering that trial.
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Babs,
I've been on xgeva for about a year and a half. No problems at all with side effects or calcium levels. My MO did mention I would stop the shots next April when I will have been on it for 2 years. Didn't know that before she mentioned it.
Best wishes on your next treatment choices,
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Thanks Shetland for the lead
Babs
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Babs so sorry to hear about the progression. Not the news we wanted to hear. Praying for you and hoping that the next treatment kicks those mets. Great that there seems to be many options for you. Please keep us posted.
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Kaption, Same with me that I have really cleaned up my diet even more than usual so thought I had this one dialed. So far they haven't said I will have to do meds and I hope it subsides a little next visit. We had a Walk-a-Thon at my school yesterday and for the first time, after walking around not that much, I felt extremely fatigued and a little lightheaded/short of breath. It really caught me off guard. Not sure if that is part of the BP or just the meds.
Babs, so sorry to hear about progression and that this combo didn't work for you. I hope the next round works some magic. I have no idea yet if this is working and it scares me to think I won't have another scan until late November. I have only had one lab result from TM numbers, she did not have them tested this last time, and get the next at the end of October. So haven't even got enough results to see a trend yet?? Seems like a lot of time passes in between tests giving my liver tumor time to have a party....
Congrats on the TM numbers Deanna! I always learn new details I should be watching for on my labs from you. My alk/phos was in the normal range the first time and on my last lab results it was not even listed?? What do these number signify? Good luck scanners! Sending best wishes for all...
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Hello! I'm new to Ibranceland and just started cylce 2. Have any of you had peeling skin on your fingers? It doesn't hurt and it's not itchy. My hands feel like they're pruney, even though they are not in water. Just wondering if others have had this. My other side effects are manageable: fatigue, some "spaciness", mouth sore and right now I am getting my blood work checked every week. Thank you for all the info here. Best of luck to everyone!
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Groovywilma, I have also had the prune look and feel on my fingers, you are the only other person I know that has mentioned it! I thought I was crazy! Lol! No peeling of skin though. I m just finishing my 6th cycle
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Hello Everyone, my Onco recently suggested to go with Ibrance but its turning out to be very expensive since I am uninsured. If anyone would like to donate their unused pills then please do let me know. Hoping to get this soon somehow..
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Hi Babs,
Sorry to hear about your progression and I hope new drugs under clinical trial works for you. My Onco had recently prescribed Ibrance and it is turning out to be very expensive for me since I am uninsured. I am wondering if you have unused pills that I can use. Please do let me know. Cheers & Good Luck to us.
Usha
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Babs, so sorry to hear of your progression! That really sucks. I'm sort of in a no mans land right now. My scan looked very similar to the one in July if not a little worse, but hard to tell since it was a different machine used, one w stronger magnets. My onc wants to continue the Ibrance for now. She didn't take tumor markers this month but will do them on November 2, so we'll see if there's any pattern of progression or the reverse then. She also increased my OxyContin to 40 mg 3 times per day so that should help w pain and for one day so far it seems to be working
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Groovey, I got mouth sores in the first round, swollen gums, teeth pain in a recent filling and a sore jaw. Not this time around....weird
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Cristina, I'm glad you didn't get yanked off Ibrance. I'm about to start cycle 5 and I get my first scan since starting any treatment on Nov 19. Hope the oxy keeps you comfortable.
Groovywilma, welcome to Ibranceland!
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Ellelou, Isn't that a new avatar? That baby looks so tiny, do you have a brand new Grandbaby? Congratulations if so, apologies if I'm not remembering correctly.
Cristina, I agree with Ellelou, I'm glad your mo is giving the Ibrance/Fas combo a chance to work. Some of these therapies seem to take some time before you see results.
I'm just finishing up round 2 of Ibrance/Faslodex. Slightly less fatigue than during round 1. Anyone else getting achy/restless legs or dry, tickle in your throat cough? I only seem to get these during the 3rd week and last cycle they went away during my week off, so suspect they are se's.
Wishing everyone in Ibranceland a pain free, restful Sunday.
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Jobur, Yes, new avatar and that's Ruby Louise, my granddaughter, who is now close to 15 months old. I wasn't on here when she was born in July '14 because I didn't know I had bc yet. I'm about to start cycle 5 of Ibrance and I think the se's are less or maybe I am used to the new normal. However, I never had many se's in the first place--maybe some fatigue?. My wbc started at 11 went down to 4 and up to 7. I think the Letrozole might be more of a problem with feeling weird and clammy and I hate the humidity we have had this summer in SoCal.
Ellen
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Jobur, I do seem to have an annoying dry tickle. I don't go anywhere including bed without a water bottle. Also, I don't get "restless legs" per say but calf cramps even though I am always pounding water. I am halfway through round two of Ibrance and have some fatigue but not terrible.
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artist and jobur, I have also been getting pretty severe leg and foot cramps during the night. They awaken me and often keep me awake because I can't seem to position my legs in any direction to uncramp them. Since it's my "off" week for Ibrance, I wasn't sure if it was Faslodex or Ibrance causing the problem. Deanna
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Deanna, I am on Femara and Ibrance. I think it is the Ibrance as they got better on my week off.
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Neutrophils only @ 900 today (Day 28). Will have them re-checked later in the week and will see if the leg & foot cramps ease up any in that time.
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Hi I will start this on Thursday of this week Hope to find out side effects from all you here who have been on it
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Gals with leg cramps, are you getting enough potassium? Potatoes and bananas are good sources. I don't get cramps exactly, legs just ache and keep me awake. DH is very susceptible to "Charlie horses" in his legs and we found potassium supplements seemed to help.
Ellen, Hope you are adjusting to the "new normal", I see you were just dx'd this summer and it is so tough at first. Hope you get to see that grandbaby often! They are so fun at that age.
Artist, Thanks for confirming the dry tickle as an se. Seems like it goes away on the week off too.
Deanna, Sorry about the low neuts, hopefully it will just be a short break for you. What does the rest of your blood work look like? Most of my CBC panel seems to have gone farther out from the normal range in this 2nd month, though my WBC and neutrophils are hanging on the low edge of normal.
Hi Connis, I just took my last pill of 2nd cycle. Se's are a little different for everyone, but so far I have had minor rashes, sore mouth, fatigue, runny eyes/nose, leg aches, and dry cough. Don't worry, it's not as bad as that makes it sound! The se's seem to vary for me with where I am in the cycle, so all of this doesn't happen at once, and all have been noticeable, but not horrible. Good luck to you.
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I've been doing okay this cycle. Except for crippling back stiffness in the first 15 minutes of the morning. My mud cycle neutrophils were 1.0. They told me to "jump up and down before the blood draw, it may help boost the counts". Sounds ridiculous to me but I'll try it. Hoping I don't have a dose reduction.
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Well my first three month scan since I was diagnosed this past June showed good results! All areas that were lit up before are now dark... so the Ibrance, Fulvestrant, Goserelin, Zometa combination seems to be the treatment of the hour for me. This is the first time we have had any good news since this all started and I'm very relieved. My tumor markers for the first two months did go up but this month they started going down. So, good news all around.
Jobur... I have the dry tickly throat with a cough... it's not terrible but I also keep a bottle of water with me all of the time. I've also have the restless legs but going out for a walk every day has helped relieve that.
Wishing all of you in Ibranceland good results and for those of you who aren't getting the desired results I hope and pray that your next plan is a winner for you... we all deserve good news and I want that for everyone.
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Chattykat...😸😸😸 Myra
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Wonderful news, chattykat, although I had to look up one of the drugs you're on -- Goserelin. I don't think I've ever seen that one mentioned before. I wonder why your onc decided to add it to your regimen. Do you know? Just curious.
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Congrats Chatty!! My tm's went up this month, so I am very glad to see someone else who had #'s go up, and then down with good results!! Keep up the good results!!
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ysy chattykat! Such good news!
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Very happy for you Chatty! It's nice to hear great news
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Chatty, Terrific!!!! *susan*
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Thanks ladies...
dlb... I have noticed that I haven't seen anyone else on Goserelin... but lots of people on fulvestrant. It's a question I plan to ask at my visit next week because I am curious about why I'm on both. I'm still new at this and trying to sort out all the different meds available. I'll let you know what she says.
Because the Goserelin is a rod they place in the belly... it leaves a big 'ole bruise. So, I leave the clinic with two bruised butt cheeks and a bruised belly... but, if it's working I'm not going to complain too much.
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Chattykat
That's great news! So happy for you!!!!!!!!!!!!!!!!
Babs
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Goserelin is also known by the brand name Zoladex.
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Chatty... Congrats!! I too am on Goselerin, or Zoladex once a month. I was pre-menopausal, so I have to get the injection.
Deanna... My neutrophils are low as well, I have to take a break and have been reduced to 100mg. I was sooo wiped out last week, I knew something was up.
Question to you all... Do you all get flu shots? I always got flu shots and this is my first flu season since diagnosis. I am still working around lots of germy kids and mu anxiety level is through the roof
Monika
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Chatty, So happy for your good results! I think Goserelin is to suppress estrogen/progesterone in premenopausal women as Faslodex is supposed to be for postmenopausal gals. Ouch! Not fair that you young gals have to put up with an extra shot, but good to hear it is all working together so well.
Monika, Sorry you felt so wiped out last week. It must be so hard to keep working through the fatigue. Hope the reduction to 100mg works out better for you. I have never gotten a flu shot before, but think I will get one this year. Sure seems like it would be a good idea for you as you are surrounded by all those little germ carriers, especially if it eases your anxiety!
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Congrats, Chattykat! Wonderful news
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Fantastic, Chatty! Happy to hear your good news.
Monika, yes I did get a flu shot last week and actually, my onc was giving them yesterday at my cancer center to her patients. She advised to get it.
So I also got some good news. I am holding pretty much stable on the Ibrance/Femara combo and I can begin cycle 4 still at the 125mg dose. After a few treatments including 2 clinical trials which did not work for me, and from which I had a lot of progression - I am happy to think that maybe this combo will continue to be the one for me at least for a while longer. Actually, my TM's which doubled and then rose slightly in the first couple of months on Ibrance - have stayed the same now. I'm hoping for a decrease when they get checked again next month. This is especially important for me that I get to stay on Ibrance which I am finding a very easy treatment to be on (except for the low counts) because my Mom has just been diagnosed with Breast Cancer and I want to feel well enough to be there for her and support her. I have to post more about that later. We got the results of her biopsy and I am going with her to see a breast surgeon tomorrow. So good news for me was really needed!
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Oh Hummingbird! My heart goes out to you. Prayers for lots of good news for you and your mom.
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I have a question about Ibrance. How low did your wbc and anc go before your treatment was stopped? My wbc is 1.7 and anc 600. Dr. called and I'm not to finish the last 4 pills and will do a dose reduction of 100mg next cycle. This is kicking my butt but praying it works!
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Hummingbird- I am so sorry to hear about your mom. You'll have so much insight to offer her that I'm sure you will be a huge encouragement to her along the way. I'm sorry she and you are both going through this. I'm so glad though to hear you got some welcome GOOD NEWS on your scans!
Chatty - Congrats on your fantastic news! Wishing you a long period of dark scans
Deanna - Congrats on your tumor marker improvement and sorry to hear you have to sit out a few days. I'll be curious if they keep you at 125. You and I are at about the same place. But my onc lowered me to 100 dose after the first cycle because I had dropped to .5 ANC neutrophils (no fever though). With some extra days off, I eventually recovered to 1.1 ANC. But they wouldn't restart me until tested again a week later. (I had gone up to 1.9 by that time.) I thought they were being somewhat more conservative than the Ibrance protocol indicated. Their rationale was they would rather keep me on the med at lower dose than sitting out days. But I think your docs have followed the protocol exactly. Expecting my bloodwork back today, and if good, I'm going to inquire about trying 125 dose again.
Hi Sally - See my note to Deanna above. I was stopped at .5 until I recovered to well above 1.0. The clinical trial protocol can be found in the Ibrance prescribing info. I'll try to find it and post a link. A few pages back Shetland Pony also linked to a chart that showed definitions for the various grades of neutropenia.
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Dose modification chart - Scroll to Section 2.2
Grades of neutropenia - Scroll to line 7 for ANC/neutrophils
Thanks to Shetland Pony and jjski62 for linking to this info originally. It goes back to page 40 of the Ibrance thread.
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Moissy, thank you!
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Moissy, thank you very much!!
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So very happy to hear that Ibrance+Femara are keeping you stable, Hummingbird, but so very sorry about your Mom's dx. Of all the Mother-Daughter things I can think of doing, bc isn't one of them!
Moissy, yes, UCLA is totally by the book, but in a knowledgeable (they did the trials) vs. simply regimented way. What's interesting is that my local onc (who does my monthly bloodwork and Faslodex shots) told me I could re-start Ibrance even though my neutrophils were only at 900 because they were on the upswing. But my UCLA onc has told me in the past they need to be at 1000, so I refused until they're rechecked either @ UCLA tomorrow (have a follow up there) or locally on Friday. I very much want to stay on the 125 dose and felt like jumping into cycle 3 when my counts were still low was not the right thing to do. I'm only sharing this because it's interesting (at least to me) how a different call (and we all know our oncs don't all think alike) could lead us down a different path. We really need to be well-read and our own advocates, especially when a drug is this new.
Chatty, thanks for explaining about Goserelin.
Monika, I know what you about being wiped out at the end of an Ibrance cycle! It's a tough feeling to explain to my family, but it feels like I'm literally dragging myself around. But I am loving these extra few days off it and feel like a whirlwind in comparison!
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Well, the good news is my blood counts are up and I don't have many side effects.
The bad news... It's not working. 😕
So, starting next week I'm off to Xelodaland.
I'm so happy for those of you doing well on this combo. I wish you all good future results.
I'll probably pop in and follow your thread anyway. I feel I know a lot of you and have an interest in your well being.
Stefanie
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Oh, Stefanie - I'm really sorry to hear that. You have contributed so much to the Ibrance knowledge bank here. I hope Xeloda treats you well and you have a good response!
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Oh, Stephanie, that is so disappointing. Was this decided from scan results or tumor markers or both? Gosh, it just seems like Ibrance has let quite a few here down in recent weeks. But best to find out sooner than later, and glad your onc has a new game plan already in place! Please keep us posted! (((Hugs))) Deanna
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I'm so sorry Stefanie! Success in your new treatment!!
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my last scan didn't show much change, but my tumor markers have been steadily climbing.
I will have a PET next week. My ONC says he doesn't necessarily expect to see a lot of progression, since my last scan was only two months ago, but he still believes the Ibrance is not working.
Thank you for all of your kind words.
Stefanie
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Connis, I am similar to Jobur on the SE's, minor rash for about a week, sore mouth in the first cycle, dry throat wit a small cough, mildly sore joints, fatigue. But all of these were not bad at all. I also avoid dairy anytime around when I take my pill as it caused some gastro reaction...All in all pretty easy. I just don't know if it is working yet.
Deanna, I hope those Neutrophils are cooperating. Hope you are back up and running soon!
So glad to hear some good news Chatty, hope we hear that over and over from you for some time to come. I too am new at this and keeping up with all the meds combos and possibilities is mind boggling.
Monika, sorry about your break too and the fatigue. Working in a school especially as the Vice is exhausting enough...My Onc says YES get a flu shot and I plan to do so. You just never know what weirdo flu will come around and better to get a milder case or none!
Hummingbird! Jeez a piece of great news followed by that??? I'm so glad to hear you are holding stable and may it work for WAY longer than a little while! I'm so sorry about your Mom. Will say a prayer that you girls get a break!
Moissy, thanks for reposting that link! Steph, that stinks...I do hope you will pop in as I too feel like I have a interest in YOUR well being. Let us know what up. It is disheartening to hear of some failures in a row,,, Hope I can report better news in November.
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Hugs to you Stafanie!! My tm's rose last month and I worry about Ibrance not working as well. I am still new to this thread, but I always liked reading yours posts, hugs to you!
Alissa
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Steph, we started at approx the same time. I am so sorry to see you will be leaving. Will you be starting Xeloda before the PET scan or waiting for those results? I wish you the best and please do check in! Myra
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Steph I'm sorry to hear of Ibrance failing you. That is so disappointing. Please keep us posted on how Xeloda treats you. That's the one I am going to do next as well, at least in my mind, after Ibrance. My scans showed no change so not sure what's happening.
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Well, I guess my being dropped to 100 dosage was the correct call for me after all as my ANC only recovered to just above 1 even on the lower dose for cycle 2. They want me to wait for another week and test again before restarting. I'm also being lowered to the lowest dose (75) in an effort to keep me on a more regular cycle with it. I know this isn't exactly the protocol, but I guess it is proving to make sense for me since my counts aren't bouncing back that well. The nurse told me they have a handful of people whose counts just keep getting knocked down too low.
I was disappointed, then decided on some dessert therapy and immersed myself in a Dairy Queen pecan delight sundae. Yeah, that felt good.
THEN, I checked online to see if my CA 27/29 report had come back yet. Got some good news there. Even on the lower dose, my TM's dropped again significantly. So I have gone from almost 1100 at start to under 700 and today's result after cycle #2 is under 400. I know it's still a very high number, but love the direction it's heading. Best wishes to all of you!
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Wow Moisy, those drops are insanely grest!!! Good luck on 75 mg. Myra
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will be starting Ibrance soon. Pls keep me informed of side effects. T
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Way to go Chatty and !!!!!
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Moissey, that's fabulous news on your TMs!!! So happy for you!
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Bimdiddy-
Welcome to BCO! We're glad you've joined us, you've come to the right place for support as you begin treatment.
The Mods
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Great news on TM Moissy!
I've seen references to "magic mouthwash" to help ours gums. Is that baking soda/salt and water? Or is this a mouthwash you buy? I'm flossing gently everyday and brushing twice a day but it seems like my gums are not so great. Any ideas?
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Kaption, for general improvement of gums (as opposed to Ibrance mouth sores), Crest ProHealth gum protection is great. It has stannous flouride which is different than traditional fluoride in toothpaste and creates hostile environment for bacteria/plaque. Listerine also helps. It this is not enough, dentist can prescribe chlorhexidine mouthwash, which is an antibacterial.
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Here is what my oncology nurses said about the various mouth rinses:
To help prevent mouth sores: Use Biotene mouthwash (the Biotene PBF rinse has no parabens), and not a mouthwash that has alcohol.
If you have mouth sores: To aid healing, use the salt and baking soda rinse several times per day (8 oz. water, 1/4 t baking soda, 1/8 t salt). For pain, use Magic Mouthwash. For this you need a prescription, and the pharmacist will mix it up for you. It contains benadryl, maalox, and lidocaine.
I find it helps to rinse or brush after eating. I use a very soft toothbrush, and fruit-flavored children's toothpaste rather than an adult minty one that makes your mouth tingle. Avoid sharp, acidic, or spicy foods. Watch the sugar.
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Thanks Shetland Pony. That's good information.
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Thanks everyone!
Oh, does the Crest have triclosin in it? I use Tom's to avoid triclosin.
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Hi Bimdiddy - Welcome to breastcancer.org. This site has always been a great place to receive and offer support. If you go back through some of the previous pages of this thread when you have time, you'll find lots of individual comments about side effects. Our experiences do vary, but overall Ibrance seems to be a very manageable drug for most. Hope you have a good experience with it.
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Hi Steph
So sorry Ibrance isn't working for you. I know how you feel! I'm going into a clinical study of GDC 0810 at MSKCC but have to wait til 3 weeks after my last Ibrance was taken. Hoping this works better!!!
Does anyone know about GDC0810?
Babs
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Hummingbird, So happy to hear you are getting good results with this drug combo. You are due for some extended success! And so sorry to hear that your mom has been dx'd with bc. I'm sure it will be a great comfort to her to have your help and knowledge as she goes through treatment. My mom was dx'd with bc at age 80, had a lumpectomy and rads and we just celebrated her 94th birthday last month. Wish you both all the best.
Steph, Hope I am not stepping out of bounds here, but I wonder about your onc putting more faith in tumor markers than in scans. Especially when there appears to be quite a few here who have rising TM's prior to having them fall. Might you like to get a 2nd opinion after your scan?
JFL and Shetland, thanks for the tips re mouth sores. And thanks Kaption for asking. Seems like I have a sore mouth rather than mouth sores, but will try using these suggestions.
Dune, Are you going to be joining us in Ibranceland soon? Hey, I just remembered tomorrow is your reunion, hope you have a fun time and meet your $$ goal.
Babs, Sorry, know nothing about GDC0810 but good luck with the trial.
Wishing all in Ibranceland a good night and good weekend.
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You are not out of line at all Jobur. It's been 6 cycles and not only has it not gone down, but it's been steadily rising. Actually it's only the CEA. Everything else looks good. But, it may be my only my readable marker. I am getting a scan next week, but regardless of the outcome of that, (well unless it did an about face, I guess) the trend up is concerning enough to make a move. I might be able to go back to hormonal treatment in the future. He likes the bounce approach. I'm really ok with it.
He encourages second opinions and referred me to Matthew Ellis at Baylor. Not exactly my neighborhood, but I might give a shot anyway. Anyone familiar?
Stefanie
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Once again, my white count rebounded just as my UCLA onc said it would. 900 on Monday; 1400 today. Ibrance cycle #3, let's do it!
Oh, and for what it's worth -- and I'll post this on the Faslodex thread as well -- she (my UCLA onc) also commented that she was pleased my TMs were "stable" (her words, although they were actually down 10 pts) after my 2nd cycle because they often go up for several months when starting Faslodex. It just made me wonder if maybe oncs who haven't had a lot of experience with Ibrance might be abandoning it too soon, as there seem to be quite a few women here moving on from it, cutting doses, etc. I'm not a doc, and I ever don't mean to overstep, as Jobur said, or cast doubt. But I do worry about some possibly not giving the med a chance when it doesn't create an immediate drop in TMs, especially when paired w/Faslodex. Just sharing if anyone wants to bring it up to their onc. UCLA did the trials and my onc has had at least one patient on Ibrance for 6 years, I believe she said, and she clearly knows a lot more about it than my local onc who monitors me, but who has also given me some spurious misinformation about it -- like it was okay to restart it when my white count was 900, when I knew that wasn't a good idea. Deanna
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dlb, I believe that it is common for TMs to go up on Ibrance the first couple of cycles. According to almost everybody on this thread, and my ONC, by the third cycle it should start to drop and usually does. Most of the women I have seen leave this treatment were on it at least three months. If in six months my TMs didn't at least stabilized, I don't see that as jumping ship. I actually stayed on two months longer than my ONC would have preferred because I didn't believe him. But he was right. They did not suddenly drop or even stabilize. So, I would prefer to be proactive and switch it up per his recommendation rather than stay on something that isn't behaving as it should be. i don't want to wait and let the cancer get a stronger hold. And since you are familiar with UCLA, my ONC has had consultstions with Finn regarding his Ibrance patients, so I trust he is getting acurate information from the experts before he makes those decisions.
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Stefanie,could you elaborate on the "bounce approach" you mentioned?
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Sure, Shetland. When the cancer becomes resistant to a particular course of treatment, it doesn't always mean a permanent resistance. So he might do a hormonal combo for a few years, then a chemo drug or whatever the next best line of treatment, and then bounce back to hormonal. He says often (not always and I'm sure it's very individual) the cancer loses its resistance to a drug when it has been absent in your system for a long time. He said the door is not closed for me on Ibrance and we may be able to "bounce" back to it later.
Stefanie
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Stefanie,
Sounds like you have good information and lots of confidence in your mo, that is what we all need when making tx decisions. Sorry your TMs failed to cooperate and you are moving on, but hope Xeloda is kind to you AND very effective. Thanks for explaining the bounce approach, I had not heard of that before. Wishing you all the best.
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Stephanie, I know you are in absolutely top-notch hands @ City of Hope. I hope you know my comment above was meant to be a general one, because it does seem -- at least to me -- that there have been quite a few women on this thread -- and you are the most recent -- for whom Ibrance has disappointed. And I absolutely can relate to what you are going through. I held off several extra months on switching from Anastrazole by delaying onc appts and scans, when it was very clear -- especially in retrospect -- that my TMs had quadrupled (over six months), and I probably should have thrown in the towel at least a couple of months earlier -- before I had that horrible relapse I experienced over the summer. So I totally get the frustration of trying to balance waiting and moving on.
And although my onc didn't use the term "bounce back," I was told the same thing as Stephanie about going back to a hormonal when I was concerned about what I thought sounded like I was "skipping" Femara and Aromasin by going to Faslodex -- that I could always go back to them, but that when a drug (Anastrazole in my case) fails, it's best to go to something that works by an entirely different mechanism. But you can still go back and try the other A/I's in the future.
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Stefanie - Lilly's cousin drug to Ibrance has just been granted breakthrough therapy status by the FDA. My first thought is you and others who have had to stop Ibrance may have success with this new drug when it is available. It's still a CDK 4/6 inhibitor, but may be an option to try in the future after you've tried your next therapy. It has apparently had proven success for women who have already been heavily pre-treated with other therapies. Here's
and some really great info provided by Bestbird on another thread.
Abemaciclib provided breakthrough status
Deanna - That's great news that you have been able to restart cycle three already!!! I wish my own neutrophils weren't so shy about coming back out for more
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Thanks, Stefanie. I thought that must be what bouncing meant. That's the unspoken plan I had come up with in my own mind. If/when my hormonal therapy stops working, I will be interested in doing chemo to beat the cancer back again, then hold the line with hormonal therapy again. It really makes sense to me to address resistance by alternating the type of treatment. Target fast growers and slow growers, different receptors and pathways, etc. because tumors can be heterogenous.
May your next treatment pummel the cancer!
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Kaption, Moissy, dlb, artistatheart, jobur, all you wonderful ladies - thank you for the thoughtful words and good wishes for both me and my Mom. It means so much to me to be able to come here for the tremendous support and caring from all of you. I took my Mom to a breast surgeon and, since her biopsy showed multiple areas of invasive cancer in her breast and a very good possibility that it has progressed to the lymph nodes under her arm which are swollen - she will have a PET/CT Scan next and we are so hoping that it hasn't gone even further. Of course, all of us here understand the anxiety with that!! My Mom lives an hour or so away from me, and my husband and I will be driving her and staying for all her appointments. So - we will do what needs to be done and continue to take it one day at a time.
Jobur - I already told my Mom about the great success your Mom has had and it definitely helps us to know that. Thank you for sharing that.
Stefanie - I'm sorry to hear that you have to move on to another treatment, but I wish you a long, easy time on Xeloda. I have been keeping up with that thread for a couple of months now, because my onc has already told me that that will be my next drug after Ibrance, too.
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Stephanie, This is the first I am hearing about "bouncing" too and find it very hopeful that several Oncs think it is perfectly plausible to go back to a Tx that may have failed or quite being effective before. Thanks for sharing that. Hummingbird, that is some great advice to start perusing a thread that may be my next treatment and get a head start. It sounds like you have a very supportive and wonderful family behind you and you are one strong woman to be supporting your Mom now too. Best of everything to you, your Mom and the DH! Deanna, so glad to hear your next cycle is a GO! It did seem like an alarming string of failures lately........I found it fascinating and inspiring to hear of the 6 year mark for that patient. Hope to hear you are the next Ibrance success story we can all aspire to. Jobur, I too have more of a sore mouth than mouth sores, like a fatigued jaw, although it has gotten way better in cycle 2. Moissy thanks for the link as well as Best Bird's link. It is so helpful. Best Bird too is such a fountain of helpful info! It is always so uplifting to hear of a new therapy coming up. You made my night!
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Ibranceland friends,
As a reminder I just had a great scan after 4 cycles of Ibrance. I just finished my fifth cycle. I have only bone mets at this time. In the past week and a half I have developed a chest cough. I have not cough "up" anything, but there is "stuff" moving (that has a bad taste) and the very middle of my upper back hurts in one specific spot. (No mets in that spot). Should I be concerned? My next appointment is October 22. Should I call before? What does the beginning of lung mets feel like? Maybe it's Fall allergies-but I've never had this before. Just some concern here. No fever, btw.
Thanks for any thoughts, especially from those with lung mets. Thanks
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I am new to Ibrance. I will be taking it with Femara. Started the Femara last night, and - boy oh boy - did I have vivid dreams! Luckily, I remembered reading here about that SE of Femara, or I would have been mildly freaked out.
Starting the Ibrance tomorrow. No insurance problems, and my Onc reports that several patients in his practice are doing exceedingly well on it.
Onward and upward.
Jennifer
PS: Kaption, you should probably call your Doc about the lung issues. On Ibrance, they really do want to know about every little thing. At least, that's the impression I got from my "Welcome to Ibrance" speech from the NP at my Onc's.
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Thanks, Jennifer. I hope you do well on Ibrance and Femara
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That's great news about your scans Kaption! I do not have lung mets but it seems like the ibrance caused me a little nagging cough. Also my allergies do cause a cough irritating cough as well as some "stuff". I would get it checked out with the back pain just in case though. Don't scans show the lungs?
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Righto jobur! I'm betting within the next 3 weeks, and that is based on how soon I get the Ibrance. Does it only come by mail?
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Thanks artist. I remember a couple of you talking about a cough. And I did just have a scan that should have shown any lung mets. I'll just tell my MO a week from Thursday on my regular appointment. That will give me time to see if it's getting better or not. Thanks
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Kaption - It's fantastic that your scan didn't show any lung mets but if you should get short of breath, definitely contact your MO. One of the rare SE of Ibrance is blood clot in the lung and I don't mean to scare you at all, but don't hesitate to check it out. When I was on the Afinitor/Aromasin combo I wound up with a bad inflammation and bleeding in my lungs. So lung mets aren't the only thing to worry about. You didn't mention anything about being short of breath, but just in case that should happen……. Hopefully your pain has nothing to do with any of that.
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thanks Hummingbird. Blood clots have been in the back of my mind. I haven't had any significant shortness of breath and my back pain is a little better. Think I'll give it a few days, but certainly pay attention to any shortness of breath. Thank you
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Here's the latest news: The oncologist at Carroll County confirmed that the lymph nodes are growing, so she cancelled my treatment that was scheduled for today and everything else that had already been scheduled. I said my goodbyes to the fantastic oncology nurses there and am now in contact with the oncologist at Johns Hopkins with whom I will be working. Most likely it will be an Ibrance trial. Apparently, they like you to be 30 days free of chemo first, so I should be feeling pretty good for a month.
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Hello Ladies,
I've been away for awhile, traveling out of the country. I've tried to scan the posts but there are so many, so I would like to welcome those new to Palbociclib, I'm sorry you are here but there are many informative ladies who bring support to us all.
I did have blood tests while traveling and I will post on these on the travel board.
I had my tumor makers drawn (3rd time) and they are significantly down, I am one happy clam. My CEA was down to 8 from a high of 28, CA 15-3 314 from a high of 501.1 Initially the markers rose similar to what's been reported by others. Also, I am on a 75mg dosage and my counts appear to be stable. I still have mouth sores at times, I've learned not to travel without my prescription mouthwash but otherwise I am okay. This is a wonderful birthday present as I was more tense about the results then I realized.
I will have questions about Palbociclib dosages that I will discuss with MO tomorrow,
However, I am more confident that this protocol is working.
Kathy
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Welcome back Otto. Hope that your trip was fabulous! There is a travel board? If so, can you tell me where it is. I am very interested in how you managed blood work out of the country. *susan*
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Kathy - Well, happy birthday! Can't think of a better way to celebrate. Congratulations on your great numbers!
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Hello, friends!
I'm on the third week of the first cycle of Ibrance, just sharing what's up with me:
1) cough that doesn't go away
2) terrible mouth sores (like railroad tracks in the mouth)
3) less fatigue than on weeks 1 and 2 of the new med
4) burning feet (I'm told that is because the nerves are healing from the damage caused by abraxane)
I mitigated the side effects a bit by taking letrozole in the morning and Ibrance in the evening after dinner. This took away the fatigue I was experiencing on Ibrance, and the night sweats I was experiencing on letrozole. If the fatigue is really debilitating, as it was with me, changing the schedule of meds might work for you.
I'm also on Himalaya's Livercare (available on Amazon) and Gaia's milk thistle (on Amazon and at Whole Foods), which has significantly lowered my AST in the two weeks I've been taking it (65 to 43). This is to mitigate the damage caused to my liver (including a cyst) while on abraxane. Encouraging results so far!
Sharing in case something or other works for someone else.
Happy Columbus Day!
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Hi Hawks! That is an interesting idea to split up the meds.......Also, despite the fact that my Onc Poo Poo'd any supplements I have been reading a lot and have decided to wade in slowly with a few. Alternative/complimentary treatment just makes sense to me.
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Hi Ladies,I am on cycle 8 of Ibrance and lately have been noticing a lot of hair loss and thinning to the point where it is becoming noticeable. Anyone else have this issue? I noticed some of the ladies on this thread are taking Biotin supplements. Was this okayed by your oncologist?
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The doctor at Hopkins told me that Ibrance has been approved, so I can stay at my local hospital to get it. When I asked him about new treatments coming down the line, he replied:
"Lots of things coming down the pike; but they would have to all be here downtown from what I see of our trials and not sure you would be eligible (depends on whether this is first diagnosis of metastatic disease or already received 1 or 2 or more lines of therapy).I think Ibrance is a really good drug for you to be on.
Best,
Ben"
So, does this mean if Ibrance doesn't work there will be no more drugs for me? Wow!
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Dune, if so far you've just done Taxol and then Carboplatin and Gemzar, there should be quite a few other drug options for you. If you don't have it, PM Bestbird for her wonderful compendium of Stage IV treatments. It doesn't sound like you are at a point with limited options -- just that some trials may exclude you because you've had two or three chemos already.
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Thinkpositive, I have certainly had hair thinning. I've never had really thick hair anyway. I'm nearly to the point of needing to wear a hat. I take Biotin (MO approved) for just a couple of the 5 months I've been on Ibrance. Not sure I see a big difference.
Dune sleeper, I don't really understand the first line, second line thing. I was on Herceptin and Perjetta before Ibrance, but that's when I was HER2+. I'm now HER2- so this is my "first line" under this diagnosis I guess.
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Kaption, thanks for responding! I never had really thick hair either, so with all this hair loss lately, it has been becoming more and more noticeable. I still work full time and most of the people at work don't know about my Stage 4 status, so this is becoming a problem. Not sure what to do. Thinking of trying the Biotin. What dose do you take ?
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my Biotin is 500mcg. It seems like Iread that higher than that is just flushed from your body. But, not sure if that is true in our cases. I'd be interested to know what others take.
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Had blood work yesterday for cycle 8. All good to restart, but TMs rose again. I have been feeling so well, I feel like my body is lying to me. I don't know what to think, so sad right now. New PET scan scheduled for next month. MO feels as confused as I am, so we are going to rescan and see what is going on. He has another pt. just like me. A seesaw TM and good scans. He feels scans trump markers.
This disease is good news/bad news. I hate it.
Good day to all. Myra.
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Myra, that's such a tough spot to be in. If it's any help to you, my UCLA onc recently told me that TMs often tend to go up at first for several months on Ibrance before coming down, so maybe if yours were starting down and are up just a bit, it's more like stable??? But I sure feel your frustration! Hopefully, your onc is absolutely right about good scans being what's most important, and hopefully your next scan will definitively show that the Ibrance is working! (((Hugs))) Deanna
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Myra, my TMs increased just before cycle 8 too. Since the increase was just by a few points, my oncologist is not too concerned.
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Myra, I would trust scans more than tumor markers. Just my 2 cents.
Thanks for your input Deanna.
My god I'm depressed.
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Oh, Myra and Dune, I feel for you both!
Myra, prayers for good definitive scans.
Dune, prayers for new treatments that support your body! I know they are out there. -
Yes Myra, wait and see the scans. There have been so many in here that get TM's rising and still a stable scan. Dune, it does seem like Deanna and Kaption are correct when they say, "There are more treatments out there". Plus, think of how many Onc's have said it is OK to revisit some that you have already had. Hang in there, the sun will come out again!
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Thank you all so much for your wonderful support and caring love. Myr
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Ditto what Myra said.
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sorry to intrude, but wondering if anyone has heard from hope? Thanks
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Dunesleeper, the doctor's response is not very clear; I had to read it several times to make sense of it. I agree with dlb823. I think the doctor is only talking about new drugs still in clinical trials (i.e. coming down the line) when he says he is not sure you would be eligible. I do not think he is saying there are no other drugs left for you. In fact, I think there are quite a few. Make him tell you this so you can feel more optimistic.
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Hello everyone, I've been off the grid for several months trying to enjoy the summer, vacation, get my daughter off to college, etc. I wanted to check in to give you an update on my Ibrance experience. I was switched to 100 mg after first cycle, and was delayed in starting 2nd due to vacation, delayed start of 3rd due to UTI, got in 3rd and 4th, rescanned, and despite rising tumor markers last 6 months, CT and bone scans showed stable. I was not expecting to hear that but my onc said tumor markers are not specific, they would not change treatment based on numbers, scans are more definitive, sometimes these targeted therapies can have this effect, etc. Whatever, I'll take it. I will continue this course for another 3/4 months until the next scans. So I hope this information is helpful.
I hope you all are doing well. So many posts since I've been away. There must be many new Ibrancers.
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Hi ladies,
I see some of us have good news and others not so good news. I hope all us ladies find the right medicine.
I had my first s Pet/ct after 6 cycles of ibrance and the result were very good. Before I started ibrance I had spots/ mets on my clavicle, some lymph nodes in my chest, in my liverin my spine and in some ribs. Now all the spots are gone but the one in my spine. It didn't go away but got smaller.
I can't stop praising God
Cheers ladies
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KJones, unfortunately, no - Hope hasn't posted anything lately - She started this thread and later moved to Androgen Receptor thread - has really been suffering and has not checked in on the Androgen receptor thread for a couple of weeks, so everyone please keep her in your thoughts and prayers.
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theziz-that is good news! I am in my 5th cycle and I get my first MRI on the 19th. I have 4 mets to my spine and think for only your spine met to show and it seems smaller is fantastic.
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Awesome jjski62! I love stable. I hope to see stable one day. Meanwhile I cheer on stable in anyone who gets it.
I'd love to know what happened to Hope too. It is very concerning.
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Praise God ziz!!!!! That is fantastic news!
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My bottle was delivered today after some fighting with insurance company. ..will start tonight, hopefully I don't get to tired I next few weeks have a lot to accomplish.my dd also just started treatment for brain tumors..
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Wonderful news, ziz!! I'm so happy to hear your great result.
KJones. I'm also very worried about Hope. She was posting on the Androgen Receptor thread and said she wasn't feeling well. Last I checked, she hasn't checked in at all anywhere since Oct. 3. Some ladies keep posting on the Androgen thread, out of concern and to send good thoughts and prayers her way. Hoping we hear from her soon.
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Ziz, That's fantastic! So happy for you. I forgot what you have Ibrance paired with, letrezole or Faslodex?
jjski62, Glad to hear good news for you as well. Welcome back, hope you had a wonderful summer.
Ellen, Hope you get great results from your mri too. Do you have to wait long to hear results?
Welcome keetmom, hope the first cycle is gentle on you.
Dune, glad to read (somewhere) that you enjoyed your reunion and your backdrop was a hit. Hope being off tx for a short while agrees with you.
Has anyone tried to pm Hope? I don't know if she participated in any real world contact lists. Is there any such thing on bco? I'm very worried too.
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Ziz, great news! Very happy for you
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sent you a pm. whose your MO at MSkcc. I'm planning to switch from long island to city for more options.
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One week into Ibrance/Letrozole and I've had some wacky dreams. Today, I was running on the treadmill and kept having to reduce my speed because I thought I'd pass out. Headachy and nauseous, and my liver mets hurt. Sound familiar to anyone?
Also, FWIW, my onc never tests markers at all. The hospital feels they aren't always an accurate indicator of what is happening
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ziz ~ What great news that your mets are so significantly improved!!! I'm so happy for you!
jobur, I don't have Hope's contact info, but I did send her a FB friend request today. It doesn't look like she's been on there in awhile either, but I figured it was worth a try, since so many of us are very concerned about her.
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Ziz- that is fantastic news!! Keep praising God! I am praising HIM with you!!
Dancing Veggie- I had twinges of pain in my liver here and there. I chalked it up to the Ibrance doing it's job. It did something as my two lesions decreased by half the size on my 3 month scan. Welcome to our group! These ladies here are amazing!
I too was wondering about Hope! I am so glad she created this thread as I have learned soooo much. I pray she surfaces soon.
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Myra
My dr discontinued Ibrance due to the scan results. My rising TM were of little concern to her. It was the scans that were key
Dunesleeper
According to my MO when Ibrance failed me there were many more options out there but at present only 1 clinical trial that I was eligible for. She felt that I could always try a " traditional course of meds " but this could be my only chance for this particular clinical trial so I start on October 29 on GDC 0810.
Wishing everyone well
Bab
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Babs. So glad to hear you have made the decision to participate in the trial. I know you were weighing your options and were a little uncertain. I wish you the best for a very long success and that you find this treatment to be an easy one. Please keep us updated.
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Oh my. Good luck Bab! I'm so glad there was a trial open to you.
I think I should hook up with a naturopath and a nutritionist. Well, tomorrow we get the 3 year old so I will focus on the other stuff another day.
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Myra - Wow, those markers have had more ups and downs! Hope it is just a little deviation.
Dune - Hope you are feeling better. Docs sometimes don't realize how we replay in our heads every word that they say. I do believe also that based on available treatments, there are still many options available to you.
Theziz - Glad to hear such great results!
Ellelou - Good luck with your upcoming scan!
Babs - So glad to hear from you and that you have a good trial available!
To those who were discussing hair thinning/loss. I was on arimidex (another anti-estrogen hormonal similar to Femara) for 5 years during my early stage treatment several years ago. My hair thinned considerably during that period due to lack of estrogen. So it may be possible that the thinning is a Femara side effect as opposed to Ibrance specifically. (I'm not as familiar with Faslodex SE's if you are pairing Ibrance with that). I took Biotin for a brief period back in my early stage period, but discontinued after reading more about it. I felt like unless I had a true Biotin deficiency, which is rare, it wasn't really going to do much for my hair. You may have a different experience though. I really hope you do! Let us know!
Enjoy this beautiful fall season everyone!
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It's so good to hear that many of you are doing well on Ibrance. It didn't work for me, but I'm optimistic about my Xeloda treatments, and I'll scan tomorrow to find out.
I PM'd Hope last week but got no response. I'm very worried about her, too.
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oncologists very happy today , mms breast tumor is softer and has shrunk about half after 2cycles of ibrance. The tumors on my spine are very tender and sore, I have appointment with radiology oncologists tomorrow for hip and lower spine spots.
Ziz wonderful news, thank God. May we all find the right treatment for us.
Marilyn
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Thanks Moissey. I do know how to get myself in a tizzy. I wish I was as good at getting out of it.
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Dancing Veggie (and everyone, of course),
I thought of you often while I was on Xeloda (13 months) because I mess with my hands too. At the end, they were a mess!
I'm in my first week of Ibrance/Femara as well. Am looking forward to my hands healing up. How long did it take for you?
Plus, am I delusional - I think I'm in less pain already? In the two weeks I was off Xeloda, I really felt one of the bone mets gearing up.
Jennifer
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Hope posted on the Androgen Receptor thread earlier today.
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I was all ready to leave Ibranceland and my scans came back stable AGAIN, which contradicts my TMs.Standard protocol for stable is to hold the line. So ONC wants an MRI before he decides wether to move me off of Ibrance. Now he is thinking maybe not. So, I have both a bottle of Ibrance and a bottle of Xeloda waiting. Eeeny Meeny Miney Mo. In the meantime I get another week off of meds... Yay to feeling normal.
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Oh, my word, Stef! Well, we don't want you to leave, that's for sure! Very happy to hear STABLE, regardless of whether you choose Meeny or Miney!
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Wow, Stefanie, talk about a roller coaster ride. You seem amazingly calm. I'm curious to know what kind of MRI you will have. And is that to compare with a PET-CT? Just taking notes for the future. Enjoy your extra time off!
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Steph, so glad you got stable scans with rising TMs. I hope I get that news when I scan in November, my onc is very conservative and he is giving me the leeway. Are you feeling good? He looks at the whole picture. He even told me there are many MOs that have abandoned TMs because these new targeted tx are not showing up in the blood, instead they are "targeting" the tumors like they are supposed to.
Have a good day all.....Myra.
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My TM has doubled for the third time in the past 8 weeks. I am almost finished with the second cycle of IBRANCE. My oncologist also said that if in 2 weeks, the TM continues to rise, then we will do a CT scan and make a decision as to whether or not go back to chemotherapy. I am also doing an MRI of the Thoracic and Lumbar Spine because of back pain. Had radiation on 3 spots on the vertebrae a few weeks back. The pain was there before the radiation but has gotten worse. It gets worse as the day goes on. I'm nervous about the MRI. It's not an "open" MRI but it's got a larger opening than some and is in a bright room with windows. No idea what this is. Obviously, I'm concerned but trying to stay calm Looking forward to wine tasting in our wine room this weekend. Cheers!
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Florence2006--Good luck with the MRI. I get a lumbar and thoracic one next week. I just shut my eyes and never open them and stay calm-LOL. Is yours with and without contrast?
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Shetland, I have had two hot spots on my spine since last May. On the PET they haven't changed. But with the rising TMs, the MRI is to look at those two areas in more detail. You can actually see and measure the lesion on the MRI. The way my ONC puts it, the PET shows the hot spots so you know what kind of MRI to get. Why get an MRI of your skull, hip or thoracic spine if there is no activity there? My MRI will be of the cervical spine and of the lumbar spine. The only two places that the PET showed activity. I hope that makes sense.
I think Myra may be right. The TMs are not correlating with the scans. Its very weird though. My TMs are almost as high as they were when I was first diagnosed in 2011... After dropping to a low normal while I was NED. And higher than they were at first progression last May. It's a bit unnerving. This drug is still very new. I feel perfectly fine. No pain at all.
Florence, close your eyes and pretend you are on a beach, or pretend the ceiling is 18 feet above you. But don't open your eyes. Just relax, keep them closed, breath calmly and go somewhere else.
Stefanie
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Myra and Stef, I'm in the same situation with the stable scans despite the rising TM which are higher than first diagnosed. My onc does CT and bone scans. I was resolved to moving on to new treatment but scans showed stable. So we are staying the course now. I feel fine and have no pain too. It's unnerving as you said Stef but it's comforting to know I'm not the only one. I was trying to find any literature from the trials where this phenomenon was mentioned, but I can't find anything detailing the trial results. I guess I get now why they say TM aren't reliable.
Hi Florence, I see you are from my neck of the woods! I'm not far from Phoenixville. As far as your MRI, do they have the headphones that play music? Sometimes that helps. I keep my eyes closed the whole time.
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jjisk62, where do you live. I am actually in Oaks, Regency at Providence, a 55+ Toll Brothers Community. We love it here. I started a breast cancer support group for our community. How can we share private email accounts?
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Thanks or the advice, Stefajoy. I did close my eyes and pictured beautiful things. It's over and I will get the results on Monday. We can do so much more than we think we can do.
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Florence, I sent you a private message.
Joanne.
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I am just starting 3rd cycle of ibrance, my MO very happy because my breast tumor a lot smaller and softer than it has been since the start in 12/11. I am still having a lot of back pain even though tm stable so off to radiation I go. I will be getting 15 treatments to most of my spine since I have tumor s from t4 thru the sacrum and may need a kaiphosplasty to t10 after radiation, we will see.other than be tired ibrance not bad.
Marilyn
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Hey gang! I've silently been stalking this thread for the past few weeks and I figured it was time I introduced myself. I was diagnosed 5 years ago with stage III bc and then was recently diagnosed in August with mets to my lungs, pleura, and some nodes. I started Ibrance in September along with lupron and femara. I had to quit Ibrance 14 days into my first round as my counts tanked and after two weeks of waiting for them to recover, I restarted at 100mg yesterday. Seems like a common trend.
Aside from the neutropenia, I only had a couple mouth sores and a little fatigue. I'm hoping my second round is the same (minus the severe neutropenia). My tumor markers are quite high so I'm curious to see what they look like in a few more weeks. I also have a pleurx catheter I'd like to be free from so I hope this Ibrance kicks some cancer ass. Anyway, it's nice to officially meet all my fellow palbo sisters!
~McSushi
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Hi McSushi!
Glad to meet you! Sorry that you find yourself here, but you already know what a great place this is for info and support. If you had minimal side effects on the first cycle, I'm betting you'll find the second cycle even easier on the lower dose. I hope you can ditch that pleurx catheter soon! Good luck, and let us know how things go!
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Good evening all. Just got back from having a lovely dinner with Dorothy (Pearlady) and Bill before they leave on a Carribbean Cruise. This is the second time we met and it was a wonderful , easy evening. And yummy too! Myra.
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Myra - great pic! That's wonderful that you got together with Dorothy. Actually, I was wondering how she was doing because I haven't seen her post here recently (unless I missed it) so it's a relief to hear that she's just busy having Fun!!!
McSushi - welcome and I wish you a great, long success on Ibrance which I hope will bring those TM's way down and free you from that catheter. Many ladies here find this a pretty easy treatment and I hope you do too. This is a great place to come to for information and support.
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Yes it was a great evening with Myra. Haven't been checking in much as its been a difficult month.
My onc committed suicide. Hard to believe I outlived the oncologist. So you can imagine the stress and trauma with that. Have been interviewing new oncs and also searching for a new source of the Vitamin IVS that I get. Have found an onc that I will stay with for now. But of course it's not the same. He did work with my onc. The good news is that my oncs ex nurse is working for another Dr. who is now doing the IVs. So hopefully things are now stabilizing. Had
Will be getting scans when back from vacation. New onc was on board with what my onc had said about treatment. If there is progression we will stay with Ibrance and switch to Faslodex. Can't believe it's almost 8 months on Ibrance /Femara. But feeling well. Hope that's a good indicator.
Have a great day everyone.
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Pearlady - I am so sorry to hear about your onc. How very sad. And I'm sorry that you now have to go through the process of searching for a new one and establishing a relationship with a new onc. I hope you are able to put this aside for now and have a wonderful time on vacation. Wishing you a great trip.
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Dorothy,I'm so sorry to hear about your onc, whom you really valued and did well with. It must be so sad for everyone who knew him and loved him. Sometimes we really don't know the strains that people are under until it's too late to be of any help. I'm so very sorry. He sounded like a good man. Faslodex was very good to me, so I hope you experience the same if your scans show progression.
I check in here from time to time to see how my old cohort is doing, and I'm happy to see so many of you still on Ibrance. I've completed four cycles of Xeloda since leaving Ibrance, and I do think it's working. My scan results next week should give me real answers, though. Side effects aren't too bad- and no low counts.
Best wishes to all of you!
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Pearlady, So sorry to hear about your oncologist, it must have been a terrible shock. You have done incredibly well to have survived so many difficult treatments for so long, and I hope you are able to find another great doctor to help you through this. I hope you have a relaxing and healing vacation, and good luck with your scans!
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Thank you Sandilee and Holly. Yes an incredible shock. You think someone who is so successful and treats patients from all over the world would be able to handle anything. The onc I'm going to now worked with my Dr. and says he will partner with me. In the short term this will be good and I will have time to sort things out. Still getting Herceptin so I had to do something quickly.
Sandilee so glad the Xeloda is wotking. I found it to be not that difficult. Many people are stable for quite a while on Xeloda. Hoping you get good news on your scans. Please keep checking in here.
Relaxing by the pool here waiting to board the ship. Best to everyone.
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Just wanted to add my condolences on the loss of your onc, Dorothy. It's amazing how close we become with our docs over the years, and I'm sure you were stunned to hear what had happened. So very sad.
And Myra, thanks for posting the picture! It made me smile! You both look beautiful! So glad you could get together.
Have a wonderful cruise, Dorothy!
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Pearlady & Myra - How great that you both could get together! Dorothy - I'm so sorry to hear about your onc. Aside from the personal loss, just the logistics of keeping everything going with your treatments....Glad you you have an interim plan in place. Hope you have a great trip. Enjoy!
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Pearlady, just shocking about your onc! So sorry for your loss
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Just wanted to add my "ditto" to the support above. Pear lady, that is so sad for all involved.
Glad you and Myra got together. Thanks for sharing the picture. You have both been helpful and supportive on this board
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I don't post that often here.
Pearlady, I'm so sorry to hear if your onc's tragic passing and the stress it has placed on you. I had always thought you were from NY but now I see your profile says NJ. I live in NJ and go to SBMC for treatment. I wonder where in NJ you are? Enjoy your cruise, that sounds awesome!
Stefanie- wow that's stressful not knowing if the next time you will be in Ibrance or Xeloda but yay for stable!!!
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Pear,
Strangely, I know how you feel [almost.] My original oncologist died 6 years into our relationship. We were close. I trusted him implicitly. We talked about me, about our respective children, his wife, and their lovely tradition of Thursday date night where they trolled around Allston eating at ethnic joints with a max of $15 per person. I was crushed. But, to have a doctor choose to die, well that is another level of grief I think. It is a hard transition to find the "next" one. My current onc is totally and completely different, but after "training" her for four years, we are finally compatible. Good luck finding your next place to put your trust. If you are lucky, you will find them as quickly as I did.
*susan*
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It is quite ironic that an oncologist, who spent his life fighting to keep others alive, would end his own life. So sorry to hear about your loss, Pear Lady. I hope your new doctor is even better with you care! It sounds like your previous doctor was excellent at what he did.
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Sometimes people who spend their lives helping others just burn out. I was reading that burn-out is a real problem for doctors, as they have so much invested in the well-being of their patients, they work long hours and often suffer from exhaustion as well. For every patient who is doing well, there are undoubtedly others who they are not able to help. I can see how sometimes it might seem like a losing battle. I feel for his family.
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Great pic Myra and PearLady!! Great to see those smiles! PearLady... So sorry to hear about your onc. Hope and pray you find someone just as good or even better!!
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Well, I'm back. Actually I never really left. Thought I would be on Xeloda by now but no change in scans or MRI in the 6 months I've been on Ibrance. So going back on after a lovely two week break. Scans again in three months. We'll just keep watching.
Myra and Dorothy, such a beautiful picture! Thanks for sharing it
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Awesome news, Stef!
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Stef is back,
Ring the bell.
Stable scans and feeling well.
Ibrance working, hip hooray.
Pop your Ibrance pill today.
OK, a little punchy late at night, but so glad to hear good news on your scans, Stef!
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Heehee.. That's good Moissey
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Yes Moissey that made me laugh! Welcome back Steph that is great news! Pearlady, what a stressor for you. I hope you have a fantastic and relaxing trip, time to grieve your Onc....Myra and Pearl that is so awesome that you ladies get together on occassion and that is a very cute pic! Susan I like the idea that you are training your Onc. I could stand to do the same with mine. Best of luck on the scans Sandilee! Best wishes on your results Florence! And welcome McSushi!
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Steph, so glad you can continue on Ibrance! Moissy, loved the poem, so cute and funny! We all hope to be popping that pill for a long time
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Steph, hip hip hooray. I am so glad you waited for scan results before moving on! Hope I get the same results.
Moissy, that poem was so cute. Good job 🎭 This is what is so wonderful about this Ibrance group
Great day to all today, felt a little under the weather yesterday. Feel better today. Myra.
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a question for those who travel, use a consulting oncologist...or anyone who can advise.
We try to spend January-March in Florida. Last year I was receiving infusions. The onc and infusion center I used were fair. The lab in that office was scarily unprofessional. This year, on Ibrance, all I really need is a good lab and an onc to meet once a month. (This is all assuming the December scan is good). Obviously, if anything goes wrong I'll come home.
We stay in the Cocoa Beach/Cape Canaveral area. Any suggestions? Thanks
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sorry, I live in Ft. Lauderdale.area which is about 3 hrs away. Myra
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Thanks, Myra. I'd consider driving to Orlando, but Ft. Lauderdale is a bit too far
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Stephanie, so glad to hear you're staying on Ibrance, and so very happy to see your news on stable scans & MRI!
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Many here have donated . Thank you !........Wandering around and cheerleading again
Donate today, make a difference directly in all our lives. By supporting BCO, we support each other. Thanks and Hugs
https://community.breastcancer.org/forum/110/topic/834331?page=1
Link to the mainboard donation page
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Absolutely, keep eyes shut. And Myra I appreciate learning why tumor markers don't necessarily jive with MRI. Well guess what. I'm in a lot of pain right now and ready to lie down, but I will be starting Ibrance/Aromasin Sunday. I wish for lots of good reports from you and me. I've been off chemo for at least 2 weeks and feel much more energetic and interested in food. I'll admit to enjoying that more than I worried about the uncontrolled cancer. Life was really good -- and so I'll do all I can to help this work.
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Hello All,
My doctor prescribed Ibrance for me. I'm going to start it Thursday. So far I've been diagnosed with bone mets. I've heard really good news about this drug and this makes me very hopeful. I am also waiting on my PET Scan results to come back. Please let me know how you have responded to this drug and if there were any side effects. Thanks.
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rushjackson, please read back on this thread. There are many discussions about SEs and results. Hugs, Myra
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Stephanie that's great that your scans and MRI were stable!
Babs
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Rushjackson, many of us are tolerating Ibrance very well. Some fatigue and a drop in blood counts, but your onc can adjust the dose if needed.
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Hi Everyone,
I was diagnosed in 2011 and have been on Ibrance+Femara since a week. Have been experiencing terrible cough and wondering if anyone has experienced the same and how it was managed. I am unsure if it is due to my lung mets or side effects. My Onc has advised to increase the steroid doses. Also wanted to know if anyone took Artemisinin, AHCC, Shark Cartilage, Pau D'Arco or Essiac tea along with Ibrance+Femara combo. Would really appreciate any insight.
Cheers and good luck to us
Usha
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I will be leaving this forum. Ibrance did not work for me. I am so disappointed. I resume chemotherapy on Friday and will lose my hair fir the first time since I started this journey. Best to all of you.
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Usha - welcome to the Ibrance thread. You will find a lot of support and information here. I am not experiencing any coughing on Ibrance, but I know other ladies have. Hopefully they will be along soon to give you advice.
Florence - sorry to hear Ibrance didn't work for you. Losing your hair, especially for the first time, will be difficult. Mine is just growing back after losing it for the second time. But after the initial anxiety and sadness I felt as it was falling out (mine was very long this time) I kept thinking that at least I'm still here and the hair loss is not the important thing. I bought another wig and got used to it. Wishing you a great and long success on your next treatment. Please keep us updated.
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Usha, I recently developed a cough. I do not have lung mets. Mine ended up being a cold. But, my nurse practioner said that a cough is not usually associated with Ibrance. But, as hummingbird said, a few people have commented about having one.
Florence, I'm so sorry Ibrance did not work for you. I wish you success with your next treatment. Take care
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Rush, I have been on Ibrance/Femara for 3 months and so far the SE's have been pretty mild. The first round I had a sore jaw and teeth pain! (Weird) Some fatigue at first but not bad. Some joint pain but gain not bad at all. Usha, I did develop a small annoying cough and I do not have lung mets. There was another gal on here who I can't remember who also said it seemed that it correlated with the ibrance as it got better on her week off which I felt too. I have not delved into too many supplements yet as it is sooooo confusing as to what I believe in. Florence, I'm so sorry to hear that Ibrance did not work for you. I will look for that cute cute little face on other threads, hair or not! Best wishes to you.
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I was diagnosed with stage 4 bone mets this week. My bone biopsy reported it was ER/PR negative but I went to Dana Farber today for a second opinion. They said that the findings of the bone biopsy regarding the hormones is probably wrong. I was 18 years out and the recurrence did not come back in the breast, just to the bone. They spent 3 hours with me today, and I never dreamed there could be a silver lining to such a black cloud. So I am starting the Ibrance and Femara soon. I was on Femara 2003-2008 and I don't remember any really bad side effects from that. I am going to read up on the side effects of Ibrance but they said it is tolerated well. Thanks for reading!
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Hello LovesMaltes. Welcome to Ibranceland. It's a good group that will support and help you. As stated above the SE have been tolerable for most of us. We have had several showing good responses.
It is interesting that you've had differing opinions on ER/PR. I've had issues with my HER2 status cancer is tricky!
Best wishes on your treatment and care
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Hi Florence
Sorry to hear Ibrance wasn't the answer for you. I know how disappointing that is! Hope your chemo is easy to tolerate!
Bans
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I'm on cycle 4 day 6 of 125mg Ibrance. Only SE was a rash on my hands during cycle one. Oncologist said it was normal. Had a CT scan during cycle 3 and tumors are shrinking. I will do another 2-3 cycles then another CT scan.
Thank you all for your updates. If Ibrance works for you I hope your success continues. If it doesn't I hope you find something soon that does.
All the best
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Florence - I'm so sorry to hear that Ibrance didn't work. This is really disappointing to hear. I echo what Hummingbird wrote on the hair. It is so hard to lose it - there's no question about it. I think there's a great hair thread on the boards that you may want to check out. I personally didn't prefer to wear a wig and instead opted for beautiful hats and big earrings. You will find a look that works for you.
Usha - Welcome. I have not taken any of the supplements you mentioned. Hope your cough resolves soon.
LovesMaltese - So glad you got some encouragement at Dana Farber. I was recently diagnosed with recurrence after 11 years. Although I always knew there was a strong possibility of it, I can only imagine how difficult it must be to receive this news after 18 years. Not that there is ever a good time for ANY of us to hear it.
One of the BCO members BestBird has compiled a wonderful resource booklet about metastatic cancer. Here's a link that tells you how to request the guide, but please see the info highlighted below which came from it. Possibly this may pertain to you.
Bestbird's Guide to Metastatic Cancer
According to the latest (2014) National Comprehensive Cancer Network (NCCN) Guidelines, "Patients may be candidates for hormonal therapy irrespective of their hormone receptivity status, provided that their cancer is in the bones, soft tissue (muscle, fat or nerves), or internal organs and is not causing symptoms. The reason for suggesting hormonal therapy is because sometimes the metastasis is indeed hormone receptor positive and the actual test results are incorrect. Therefore, hormone receptor negative patients and their doctors should consider hormonal therapy especially if the patient had a long disease free period after initial treatment, if their cancer is confined to one or few sites, and their cancer is not causing symptoms." (This represents a major shift in thinking regarding potential therapies for TNBC and hormone receptor negative patients).
From: http://www.nccn.org/patients/guidelines/stage_iv_b.../z
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Florence, I am so sorry to hear Ibrance did not work for you and you need to go back to chemo. I am one of the lucky ones who have never had chemo or lost my hair, so my heart goes out to you! Please keep us posted on how you are doing. Hope your next tx gets you stable or better.
Steph, Happy to hear you are staying with us! Guess you've been riding the emotional roller coaster on tx change, but so good to hear you are stable.
Moissy, Loved that little poem! Made me smile when I read it.
Dune, Happy to hear you enjoyed your couple weeks off. I think/hope Ibrance will be a breeze for you. What other tx are you pairing it with, letrozole, Faslodex, or ??
Hummingbird, How are you? And how is your mom doing? Give her a hug from me.
Welcome to Ibranceland rushjackson, usha, lovesmaltese, and pup-pen! Hope this will be an easy and effective tx for us all!
Hugs to everyone else not mentioned by name. I appreciate all of your posts.
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I want to also say how much I appreciate this board and all the supportive people. Thanks to all who take the time to participate.
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Florence, good luck with your chemo tomorrow. I'm so sorry Ibrance didn't work for you. Let us know how you're doing! I'll be thinking of you tomorrow. Deanna
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Thank you Hummingbird, artistatheart, Moissy, jobur
Florence - Really sorry to hear that Ibrance didnt work for you.I lost my hair during the first cycle of chemo and I had managed to grew it again. I have to loose it again when I went through WBRT cycle but I am happy with my wig.
Good luck everyone
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Jobur - thank you so much for thinking of me and my Mom and giving her a hug. Turns out the results of my mom's biopsy and scans were not good at all. They show metastatic breast cancer with a strong suspicion of Lymphoma too! She also has a mass on her pancreas, besides both breasts and lymph nodes in many areas being affected. When I was told this, I felt like a dark cloud came down over my head. My mom has supported me for everything I've gone through, and now she's going to struggle with advanced cancer. I hope so much that I will feel well enough to help her. It helps me very much to know that I can come here and that you all care. Thank you.
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Hummingbird, I am saying extra prayers for you and your mom. I know how you feel since I have elderly parents who need me. We can only do what we can do, and I'm praying to the Blessed Mother for strength and courage for all of us. Try not to get overwhelmed and overstressed - best to take it one day at a time, one thing at a time. As my Irish uncle always said, "inch by inch is a cinch, yard by yard is awful hard." Sounds corny, but very true!
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Hummingbird,
Certainly extra prayers for your mother and you. I hope you have some extra help and resources to assist you both. My best to you
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Hummingbird, my heart goes out to you. As if dealing with our own Stage IV dx wasn't enough! Sometimes it just doesn't seem fair... Prayers & hugs for you both! Deanna
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I'm so saddened by your Mom's news, Hummingbird. I always pray for complete healing for all...but I also pray that if this disease is too much for us to battle, that we have peace and comfort in all our days. Love and hugs to all.
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Hummingbird, so sorry to hear about your Mom! Life just doesn't seem fair at times! Prayers will be said for both of you.
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Hummingbird.... Many hugs to you and mom! I prayfor continued strength for you! I can't imagine!!
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I just started Ibrance and Femara today. I'm hoping these drugs will work well for me with little to no side effects. I feeling pretty hopeful about it. Other than hip, shoulder and rib pain, I feel 100% healthy. I'm starting to eat even healthier than I was and I'm in a cancer support group.
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Hummingbird-so sorry about your mom-sending hugs and prayers!
Babs
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Hummingbird - I'm so sorry to hear your mom's struggles right now. You've already walked down the path ahead of her. I hope that you both will be able to draw support from each other when you need it. The pain of those closest to us is hard to endure. Praying for healing and peace for both of you.
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Hummingbird extra prayers for you and your m poo their. I will be starting rads on Monday to lumbar and sacral Mets. No new Mets showed up on bone scan. Pain free night to all. Marilyn
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Hummingbird, I am so sorry to hear the news on your mom. I can only hope for her what I hope for all of us, that she responds well to treatment and you can be there for each other for many years. Life sure deals us some dirty tricks, but having a loving mother or daughter makes up for a lot.
Rushjackson, Glad to hear you have started treatment and are feeling positive and healthy. Stage IV is a tough adjustment, but sounds like you are doing very well. Hang on to that hopeful outlook, it is one of your best tools.
Marilyn, Good luck with rads next week! Hope you get good pain relief and few se's. Yay for no new mets!
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Hummingbird, This is so difficult for you both and your families. Prayers and hugs for your mom, you and the family. Kathy
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Hummingbird, prayers and hugs to you. My mom was dx with uterine cancer last week and underwent a full hysterectomy the next day. It turned out to be stage 1 and not other tx is needed, but the stress and emotional aspect is alot when dealing with your own issues. Will keep both of you in my prayers!!
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Hummingbird and now Mama2 my best wishes for health for your mothers. I too have an 86 yr. old mother that I am caring for. It is so difficult when you have your own issues, and you want to help a loved one with their health issues. My prayers for a speedy recovery for us all. Mama2, I know your mother was helping you alot with your babies. I hope you are getting outside help now.
Oy! best wishes to all. Myra
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Hi friends, Thank you ALL so much for your good wishes, concern, prayers, and hugs for my Mom and me. I truly appreciate the support and good advice. You are wonderful ladies, and I am so grateful that even though we never met in person - you really care. To those of you who are also caring for a family member or friend, I'm sending extra hugs and prayers for you too that you all have the strength to help them. Hoping that Ibrance works for us for a long time! We sure need it to!
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Could someone please tell me how long you were on Ibrance before your tumor markers went down. After the first cycle they went up 70 points. The doctor is throwing that count out and see what happens next month. After 1 month they put me on a dose reduction. My counts went low but hoping to go back to the 125mg.
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Sally - Our experiences seem to be all over the place as far as tumor markers. Many have gone up before they come down. Others have come down right away. Others went up somewhat, but scans remained stable. There is some general information about tumor markers (not Ibrance specific) that indicates some patient tumor markers can remain elevated for up to 90 days even if a treatment is working. And of course there are some people for whom tumor markers are not reliable at all. So, don't be alarmed if yours are up after the first cycle. That is not an unusual experience at all. If you have time to read back through some of this thread, there's a lot of discussion about how perplexing this is. Good luck!
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I have a question. Can bc spread to the lymph nodes after a mastectomy and metastasis haveoccurred? Just wondering.
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sallyk, for what it's worth, my TMs went down slightly after my 2nd cycle (they went up slightly after the first, but that was an improvement over earlier, much bigger increases), and my UCLA onc seemed pleased with that, commenting that for many women they can go up for several months before actually coming down. Remember, this drug works totally differently than any other, and we and our oncs are still learning as we go.
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sallyk my tumor markers are all over the place. CA27-29 went down a hundred point during by first cycle on palbo, but my ca15-3 has steadily gone up. I think it's a little early for me to even be watching as I'm only on my second cycle. My onco told be not to expect results for 6-8 weeks. Both of my markers are high so I'm hoping for a decrease or at the very least, stability. I agree with dlb823, this is all really new and we're all learning as we go.
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Thanks for the reply! I had a good run with faslodex 30 months. My markers went down from the first month. At about the 24 month started creeping up. My cancer is in the peritoneal and have several nodes positive in the chest with plural effusion. Praying Ibrance does the trick!!!
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My tumor markers have dropped significantly from the beginning from 203 to 58. This month after cycle 6, they rose for the first time to 62. Seems like everyone's tumor markers have been "off" at some time. I guess it's all a guessing game...this drug is so new and they are still figuring it out
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Hummingbird, Life is not fair is an understatement. I pray for you and your Mom that someone upstairs will cut you girls a break here. One day at a time is all we can do....
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Hi, I started Ibrance/Palbociclib along with Faslodex in August 2015. I was originally diagnosed in 1998 with primary BC but went metastatic in 2001, with one met to the liver. Femara alone made it disappear for 14 years. The liver tumor has come back and I am now on this new combination that has only recently become available outside of trials. YEAH! My CA15-3 tumor marker dropped from 174 to 100 after 2 cycles of the combination, and a 3 month CT follow up showed shrinkage of the tumor. My question has to do with side effects- when is the best time to take the drug etc. You are suppose to take Palbo with food, so I try and take it with dinner. I do have some digestive problems and sometimes have to sit up going to sleep- Pepcid AC has helped a bit. I am more fatigued and had a few very vivid dreams! My tongue has some sores on it, now that I am at the end of the third cycle- sensitive to things with salt now.
Also my doctor does not look at WBC but at the ANC (Neutrophils Auto Count-ANC) to determine if I can continue with chemo. Since it has been below 1.0, I have been off an extra week twice, waiting for it to go back up so I can start the cycle again. Does anyone have this measurement? What is the level of WBC they want? My WBC was in the normal range but not the ANC.
Thanks for listening and being able to answer questions or give me your experience on the is drug combo.
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NinaCa: I think >1.0 is the cutoff for ANC's and >3.0 for WBC's. That's the range my NP told me.
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NinaCa my WBC was 1.7 and ANC was 600. The way I understood they took the neutrophils count and WBC and do a formula and come up with the total ANC. I was stopped 4 days early and then put on a lower dose. I take mine right after supper. Still get a little nausea, fatigued and sore gums.
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Regarding blood counts: That sounds about right, mcsushi. I'm not a medical professional, but here is some info you can run by your onc if you are curious about the guidelines, Nina. According to the sources below, ANC 1.0-0.5 is grade 3, and it is recommended to "withhold initiation of next cycle until recovery to [equal or greater than] Grade 2". If there is Grade 3 with fever or infection, it is recommended to both take a break and lower the dose.
For WBC, Grade 3 is <2-1, Grade 2 is
-2.Ibrance http://www.drugs.com/pro/ibrance.html
CTCAE criteria vs. laboratory parameters http://www.phusewiki.org/wiki/index.php?title=CTCA...
After two cyclesof 125
I got an extra week off and a reduction to 100 because of mouth sores. I did five cycles of that, then got an extra week off and a reduction to 75 because my ANC was only at 1 after my usual week off, and my fatigue has been so bad. It's kind of interesting, because my monthly blood tests had been occurring at the beginning of myusual
week off, with the doctor expecting the ANC to get up in time for the next cycle. But last time, my blood test occurred at the end of my
week off, and we couldn't expect it to rise when I was about to start the med again that day.(Sorry, I don't know what is going on with the formatting here.)
NinaCA, it is great to hear that Femara worked for so many years, and that now Faslodex + Ibrance is working well for you. Regarding when to take Ibrance, I decided to take it at lunch because I didn't want any digestive issues to interfere with my evening classes or my sleep. I also decided to take my other pills at other times, so my body could process one thing at a time.
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Hummingbird, damn life is not fair. Nothing like getting kicked when you are down. I'm sorry your mom has to go through this, and you with her. Like you havent had enough. It pisses me off when some people have nothing bad happen to them EVER, and others have bad things happen to them again and again. It's just not fair!!!!!! ....ok, temper tantrum over.
Welcome Ibrance newcomers. I think you'll find the SEs here "relatively" mild. It also seems that with a lot of us, they actually get a bit better after the first few cycles, once your body gets used to it.
McSushi, I grew up in Philly. Northeast. Now I live in Los Angeles, but I love me some brotherly love. 😊
Stefanie
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Stephanie: you can take the girl out of Philly, but you can't take the brotherly love out of the girl!
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I decided to start tomorrow instead of Sunday. I was lying in bed hearing a great variety of sounds coming from my chest.
I'll be taking letrozole with my Ibrance
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Mcsushi, another Philly girl here! Live 20 minutes south of there!
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Did my 1st test after first 2 weeks of Ibrance. My segmented neutrophils count is high at 90 and Lymphocyte is low at 7. WBC appears normal at 8.2. Would appreciate any guidance
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usha, I'm not a doctor, but I can share what my ULCA oncologist told me, which is that low counts are an expected side effect of Ibrance. They normally will bounce back within a week after stopping the drug (in that 21-28 day "off" period), and if they do not, you can wait a few days longer and hopefully they will by then. She does not even recommend testing before 28 days because she said the drop is totally expected, and women rarely get sick as the result of it. UCLA is one of the medical facilities involved in the trials for this drug, so she has more experience with it than many oncs, including my local one.
Just my input, although others may have different experiences to share. Of course, if your counts don't rebound, then your onc may consider a reduced dosage, but that's something I thankfully have not had to address.
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lynnwood1960: Glad to have another local girl on this thread!
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Thank you everyone for your advice. After looking at the information Shetlandpony posted (very informative document), it looks like they do not reduce the dosage unless there is a fever or infection (or really bad side effect), just change the amount of time off if it is just a low ANC. My doctor has automatically put me on two weeks off after a 21 day cycle. Just wondering which is better, two weeks off or lowering the dose? Does a reduced dosage mean less side effects? I realize this drug is quite new and not everything is known and rules can change with new information. Anyone from Northern California?
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Many thanks dlb823 . Very helpful. Love and prayers for all.
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Nina, my dose was lowered to 100mg after the first cycle. I have had 5 cycles on the 100mg. My onc is very fussy with the bloodwork, had it every week in the beginning and now every 3 weeks. She says she would rather I stay on the lower dose with stable counts then bump me up to the higher dose and fool around with the counts. I guess every onc is different and like you said, this drug is so new I think they are trying to figure it out
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I have had two doses of Femara. I feel the pain is at least 30 percent better. Am I imagining this? Or am I experiencing just wishful thinking? I got up at 4 am to use the bathroom and I could walk a short distance without feeling any pain. On the way back I could feel it but nothing compared to what it was. Also my rib pain didn't wake me up. It's there but not knife cutting when I move. 2 doses only so far. Happy Dance maybe?
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Lovesmaltese, that would be quite quick, but if you feel it, it is real. Good luck with continuing on, keep those good thoughts happening!
Here is a picture of my gorgeous grand daughter all dressed up for her first official outing. I miss her so much!
Hugs,,Myra
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Myra, I don't know how you can stay away from that cute squishy baby for any time at all. I bet she smells good too.
Stefanie
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Myra, Well you certainly have bragging rights here!! She's beautiful!!
I agree that is would be terribly quick for pain to start to get better, but I can't believe my rib pain is so much better.
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Myra - she's a doll. Adorable!! She's already getting so big. I'm sure you wish you could see her and hug and kiss herevery second.
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Myra, she's adorable!!!!! Im sure you're missing her a ton!
Babs
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Myra, Adorable! Look at that cute smile
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Myra, she's a gorgeous baby. If she's as sweet as she looks, well, I hope they have a bedroom for you.
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Myra... She is beautiful!
Monika
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Myra - What a doll! She's adorable!
Nina - Your question on dose reduction is one I have pondered and tried to research because I've had two dose reductions already (and no fever or infection). I'm on cycle three and I've had to sit out extra weeks on both 125 and 100 mg. I dropped to .5 ANC on the highest dose. My onc's feeling is not to restart me yet when I am just barely above 1.0 ANC because once I restart Ibrance on a higher dose I'm just going to drop down to the danger level again before completing the entire cycle. They tell me they would rather I remain on a lower dose consistently without having to sit out an extra 7-10 days in addition to the normal 7 off.
Under the "Mechanism of Action" section in the Ibrance prescribing pamphlet, I found info that says," In vitro treatment of ER-positive breast cancer cell lines with the combination of palbociclib and antiestrogens leads to increased cell senescence, which was sustained for up to 6 days following drug removal."
So, if cell senescence (cell can't reproduce) is only maintained for up to six days after you stop Ibrance, maybe some oncs are thinking it's best to have lower dose in your system for more days overall rather than sitting out. Just speculating...which can be dangerous
I'm going to talk to my onc about this. So far, have only talked with the nurse by phone.The trial protocol definitely calls for sticking with higher dose though .I couldn't find info anywhere that broke results out by dosage. I'm afraid this may be one of those questions that isn't 100% answerable yet, but would make a great trial comparison.
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Nina, I am Lake Tahoe but my family lives in the Bay Area.
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Thank you all for the lovely compliments on Mallory. I will be visiting up there in 2 weeks. I can't wait!!
Myra
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Ibrance arrives today! I will be taking it after dinner meal- Is that what most of you do? Thanks in advance!
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Hi All-
I'm a newbie to this forum so not sure if I'm posting correctly....consider this a test
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Welcome masonsmawmaw! We are glad that you reached out and joined the community. We hope that you find support and information here among this group of informed and compassionate others. Now that you have entered a "test" post, can you tell us more about yourself and how we can help? We look forward to hearing from you. The MOds
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Myra she is so beautiful! Am I imagining it or does she resemble you?
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Myra- gorgeous baby! Yay for getting to spend time w her in 2 weeks.
Hummingbird- I'm so sorry about your mom. Thoughts and prayers being sent out to both of you.
I'm very tired today. I'm on my off week of Ibrance.
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Dorothy, you are not the only one who thinks she looks like me. Myra P.S., how was the cruise?
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Awesome information Moissey.
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LovesMaltese, I chose lunch as my Ibrance-go-kick-butt time. All that matters is taking it the same time and full stomach. Best of luck to you. I just started this week, so we can be newbies together.
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So my test post worked...Yippee!! So happy to "meet" all of you, just wish it was under different circumstances. I see that I need to work on my profile a bit more so that it will accurately display everything. In a nutshell, I am a cancer survivor, having been diagnosed at age 6 with Wilm's Tumor, resulting in removal of a kidney, chemo and radiation. Breast cancer in 2001 with lumpectomy, chemo and radiation. Thyroid cancer in 2005 with removal of entire thyroid. And now....diagnosed with mets to spine, pelvis and femur in July of this year. Currently on a regimen of Faslodex and Ibrance (just finished first cycle of Ibrance and TM dropped 60 points!). Hope to figure out all of the abbreviations, etc., for the medical terminology real soon...until then, please bear with me.
By the way....I'm 51 years young and I do plan to be around a long, long time! Blessings to all of you!!
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I hope you are able to get rest Cristine,.
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Dear masonsmawmaw, We are happy to meet you and hear your story. Stay connected here and keep posting. The Mods
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Welcome, mason'smawmaw. I'm going to guess with that screen i.d. you live in the South! And congrats on the 60 pt. drop in TMs! That's fantastic!
Stand Up To Cancer just posted a short video on their FB page about the success of their "Dream Team" approach. Ibrance is one of the advances mentioned, so I thought I'd share it here. https://www.facebook.com/su2c/videos/1015298932190... It gave me goose bumps to think that we are benefiting from these efforts, which I so clearly remember Katie Couric and others launching in 2008, the year I was originally dx'd. Deanna
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Masonsmawmaw, welcome! Lots of greateople here! Deanna, thanks for the link! It is exciting to think of all the advances made and more to come
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Deanna - Thanks so much for posting that link. I remember watching the initial broadcast in 2008 also and being so inspired with hope as they described how they were trying to develop treatments more quickly. I am thrilled to learn that Ibrance came out of their research and feel very fortunate to be a recipient. Along with BCO, Stand Up to Cancer is a great organization to support with our donations! Obviously their dream teams are accomplishing something great! Thanks!
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Myra, your grand baby is just adorable! I'm quite envious! Loves, I take the Ibrance after dinner as it seems to make me drowsy right about bedtime. Or maybe I'm just tired anyway by then.....Deanna thanks for the link, I have not seen this yet. And Moissey I haven't checked up the Stand Up Org yet but will now so thanks too. Welcome MasonsMaw! Blood test on Friday to check the TM's and WBC. Half way through my 3rd round of Ibrance and starting to feel a few jabbing sensations in my right ribcage. Kinda scary. Don't get a scan for another month. Hope it means the tumors are dying off or at least shrinking.........
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First dose of Ibrance just taken!! Fingers crossed!!!
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Welcome to Ibranceland LovesMaltese. Hope it works well for you for a good long time!
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Hi ladies! I have recently finished my 3rd round of Ibrance and Letrazole, and my PET scan last week showed the cancer is shrinking! Woohoo! So far, I still have my hair. Is anyone coloring their hair while on Ibrance? I would love to highlight it (while I still have it!), but don't want to cause it to fall out either! Thanks in advance
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Southern belle, I have been coloring my hair through all 6 cycles with no issues. I have noticed as time goes on that my hair is not growing as fast as it used to.
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Have been coloring my hair thru 8 cycles. Definetly makes it look thicker. It has been getting thinner, but DH says it isn't noticeable. Myra
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I have my hair colored regularly, including since I've been on Ibrance. Had it done yesterday, in fact. I have noticed that it's thinner and drier, but I don't think the coloring is impacting it. I think it's just Faslodex+Ibrance and the severe lack of estrogen.
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Does anyone have any good tips for fighting fatigue? I have so little energy during week 3 and most of my week off, it's really getting me down.
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I have the same question jobur. I just started Ibrance with Faslodex and Xgeva a week ago. Have been on Faslodex for 8 months and Xgeva for 6 months but my MO felt like we had stopped seeing good results. So, I know the increased fatigue must be from the Ibrance.
My other problem is not being able to fall asleep at night. I had some serious sleep problems right after my recurrence was discovered but that resolved and I haven't had problems for months. Nothing else has change but it takes 3 - 4 hours for me to fall asleep at night and I just happened to realize Ibrance is the only thing that has changed. I take it after dinner (supper:) because that is my most consistent meal and others have mentioned it helps them sleep through any nausea side effects. Anyone else having an issue with this?
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Shetlandpony,
I read through the link that you sent at drugs.com prescribing information (Ibrance http://www.drugs.com/pro/ibrance.html), and have a few questions. On page 11 they wrote about "Food effect". They said that Ibrance absorption was lower in 13% of the people who fasted which is why they recommend having the medication with food- or at least two hours after Ibrance dosing. What was interesting was the type of food they said was related to increased absorption- high-fat, high-calorie food (approx. 800 to 1000 calories, with 150, 250, and 500 to 600 calories from protein, carbohydrate and fat). Am I reading that part of the information correctly? Just curious if there are some foods I should be eating before pill taking. Thanks
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Shet- I just took my second dose of Ibrance tonight. Right after eating? But no way did I have the calories that they suggested. I am trying to do vegan with maybe chicken and fish once or twice a week, but most of my protein I am getting from beans. Maybe I am doing it wrong too. I am going to consult with Dana Farber nutritionist to make sure as well.
My question: When did pain from mets start to go away? Anyone have quick results? I am in agony.
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Hi everyone, I've only posted a couple of times, but I've read most of your posts since May. I've just finished my 5th cycle of Ibrance and I've been managing life on it pretty well. I had a recent gallbladder attack that prompted an ultra-sound, which showed two very small spots on my liver. That prompted a CT scan which confirmed that I do have two new spots on my liver; no new disease anywhere else. I cannot tell you how disappointed I am. I had so hoped to be on this drug for much longer. I am grateful to have caught the progression so early, but this is the first time I'm abandoning a treatment due to disease progression and I'm struggling with staying positive. My oncologist is ordering a new biopsy to check for marker changes and plans to start me on Navalbine (weekly for 3 weeks, then a week off); I'll be on this as long as it works. Anyone with any experience on Navalbine? Ibrance was my first med after the initial attack with Taxol. I'm sad, I had hoped so much to get more out of this drug.
Celeste
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Nina and Maltese, regarding the effect of taking Ibrance with food--I'm no expert, but here is the way I understand that section. The main point is that for the 13% of the people who had low blood levels of Ibrance when they took the pill while fasting, taking it with food reduced the gap and gave them more typical levels. I think the researchers are just saying that you should take your Ibrance with food in case you are one of those that needs food to get proper absorption.
They were trying to see if food had an effect on the blood level of Ibrance, so to be very scientific they measured the effect of food containing different amounts of protein, carb, and fat. They found that greater amounts resulted in higher levels of the drug, but I don't think they are saying you should have a certain number of calories or a certain amount of protein, carb, and fat. Just take it with food. I figure I'll try to take my Ibrance with a meal, not just a snack, and that should be fine.
Maltese, if you ask your onc or nutritionist, it will be interesting to hear what they say. It sounds like you have a healthy diet, and I'm guessing they will say, "Keep on doin' what you're doin". I remember trying to follow food guidelines when I was pregnant, and realizing there was no way I could consume as much food as the book recommended!
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Celeste, I'm sorry that you have to switch treatments already. Not what we want to hear. I hope your next treatment obliterates those liver spots. It looks like we have some things in common according to our stats. I'm curious to know what your onc said about navelbine and whether he/she considered aromasin + afinitor.
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I think my brain shut down when my Dr told me we would be changing my therapy plan. I also went to the appt alone, there are a lot of questions I need to ask when I see her again after the biopsy. I will definitely ask about aromasin + afinitor. I do know that Navalbine is what she's proposing, she did say she wants to see the biopsy results and discuss them with the other doctors at the center I go to then we can make a decision. It feels like being diagnosed all over again; lots of anxiety and a good dose of fear. I guess I need to find a new thread to follow. Good luck with the Ibrance everyone.
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I'm sorry cenglish. Your story sounds a lot like mine. I was diagnosed with small liver mets after four months on Ibrance/letrozole. My onc gave me a choice between IV chemo like Navelbine, or the pill chemo, Xeloda, and I chose the Xeloda because I thought it might be easier to tolerate, and he said it was effective. So far, so good. I had a scan this month and it came back stable, with possible slight regression of liver mets. Onward!
I feel confident that you and your onc will find something to knock out those new mets. Hugs to you.
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(((Celeste))), no experience with Navelbine, but can imagine how sad and disappointed you are right now, and just wanted to reach out with a hug. I'm so sorry that Ibrance failed you, and I hope and pray whatever tx your onc recommends next works great for you. Hang in there, and please let us know how you're doing. Deanna
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cenglish,
I feel for you - had to move on from Ibrance due to progression ( TM's were going down but scans showed progression), so I was very disappointed and know how you feel - it is so exhausting and stressful making these tough decisions on switching meds. You should not make this decision alone - bring someone to the next appointments who can help with these decisions till you get settled on your new med. Praying that you have good results.
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I just started the Ibrance- I cannot fall asleep? What the heck? I take it after eating dinner around 6-7 pm. I was still wide awake at 1:30 am. Finally I went and took a xanex because that makes me tired and I finally fell asleep- I can't say I really have a headache when laying down but I feel weird in my head, like if I move my head around it feels better maybe like pressure but not pain. I hate that I notice every twinge in my body, I worry about all of it. This am I am a bit nauseous too and constipation is awful which is prob from the pain meds- -
Sandilee
I also had small liver and bone mets while on Ibrance/ femara for 7 mos. I'm now as of this Thursday on GDC0810 which is a clinical study for a pill that's supposed to be similar to Xeloda but a little easier to tolerate. I'm hoping my TMs go back down and my progression is halted. How are you dealing with the Xeloda? That will probably be next if this doesn't work?
Babs
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Lovesmaltese, when I first started the ibrance I too got weird "pressure" headaches, nothing too significant but enough to be bothersome. My jaw also felt very fatigued for about a week. I am in the middle of my third round and no longer get that. But the other night right after taking the pill my face suddenly felt a strange tingling numbness around the edges for about an hour?? I have found with the Ibrance that SE's seem to change, but all in all it has become easier with less "weirdness". Make sure your drinking a ton of water to help with constipation. I hate the worry over every twinge too. I am much more aware of my liver these days and swear I feel twinges and tenderness in that side. My Onc says my liver will not have any symptoms of pain until the cancer is much more widespread.....Sandilee, glad to hear you got a bit of good news with your new tx, best wishes for a long ride! Celeste, sorry the Ibarnce didn't work out! Hope the new tx treats you well.
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Is anybody here doing a combination therapy Ibrance/Femara?
My wife had a second opinion yesterday, and the oncologist, recommended to switch from Xeloda to a combined therapy of Ibrance and Femara. For several of you I can read it your details after the signature. For those of you who have not added their details, and are on the combination, and can you share them please? If not here, do it with a personal message: your diagnosis in terms of ER/PR and HER2, dosage, side effects, how long have you been on it? Were you on Xeloda before?
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I just started the combo this past week. I had a recurrence to bone after 18 years. Bone biopsy said it was -E/P but MO said that is a
False positive as I was positive before. I believe they are redoing the stains. In 1997 I had ILC did well. Planning on keeping this controlled for another 18 years. -
My only treatment ever for bone mets. Ibrance 125mg/Femara 2.5mg. Femara everyday with ibrance for 21 days and 7 days off cycle. Just finished my 5th cycle. Very few se's for me. Some stiffness in joints, some fatigue at first but it's better now. I take mine at night with dinner and I have never experienced nausea. The Ibrance did lower my white blood cells at first but they are come back to normal range. I had my first MRI last week after beginning treatment. Some of the larger mets in my spine looked like they regressed a bit but some smaller ones looked a bit more active. My OM said no change to tx and rescan in 3 months. Many people on this board say that Ibrance/Femara is very easy to tolerate compared to most other tx.
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LovesMaltese - I asked about problems falling asleep a few days ago and you are the only other person who has mentioned it. Odd, but I also have the really weird head sensation, not a headache but pressure when I lay down or bend over. It feels like a sinus infection but it's not because I don't have any other symptoms. I am using Clonazepram instead of Xanax and take a Benadryl every night to help with sleep.
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I am on Femara 2.5mg (with monthly lupron injections) and Ibrance 100mg. I am on my 2nd round of Ibrance. The initial 125mg dosage was too much for me, but my labs are within range on the 100mg so I hope to continue on this combo at the current dosage.
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Hi everyone, it's been a while so I thought I'd check in.
Sarah0915 - I have that strange headache-but-not-a-headache thing too. it happens when i'm lying down at night. Mine is not really a sinus infection feeling. It's more of a tightness at the base of my skull. I have trouble sleeping as well but am not sure how much of it is se's from the meds and how much is sort of an ever present low-level anxiety. I've been trying clean up my "sleep hygiene" lately by incorporating more physical activity and going to bed earlier.
cenglish, i know that struggle to stay positive very well. But you caught that progression EARLY and that's great. Wishing you the very best going forward.
SouthernB, yep, hair loss here too. Not a LOT a lot, but some definite thinning along the hairline in the front.
LovesMaltese, my mets pain decreased significantly after the second round, but I know it's different for everybody.
Last week, I had my second PET scan since starting Ibrance. It came back NED and my tumor marker is a few points lower so essentially in a holding pattern. The cells are still active. I can feel it and my herbalist/acupuncturist says it's still there too. But hey, I'll take stable any day of the week!
Pushing ahead to round 8. I'm on 100mg and counts are routinely low and don't recover as quickly as I'd like, but onc seems to think it's better to stay on higher dose.
Hope everyone has a great week.
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Kaydeesmiles, stable is great!! As for hair loss, my hair doesn't grow, although my toe and fingernails grow like crazy. I'm on round 8, 100 mg. new PET in 2 weeks.
Enjoy all. Myra.
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Celeste - I'm so disappointed to hear that Ibrance failed you. We all have had such high hopes for this drug and I hate hearing when it doesn't work well enough for someone. I hope Navelbine knocks those mets right out.
All - My last blood draw my liver enzymes were what my PCP called "mildly elevated." She suggested that I go off my cholesterol statin medication before next blood draw. She said the levels were comparable to what they watch for when statins are causing problems and that because Ibrance is so new there's not a lot of experience with drug interactions. Haven't met with onc yet. Of course my immediate wondering was if this was the start of liver mets. I know some of you who progressed to liver mets are still following this thread. Did your liver levels increase slightly or significantly? I'm due soon for my first scan since starting Ibrance so we shall see. I'll have regular bloodwork again shortly after that.
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Celeste, I too may be the latest failure with this combo. My blood work came back today with "abnormal" liver function. My Onc wants to push up my scan date. Yes, a whole new round of anxiety and fear.
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lots of good luck artist. Myra. 😄😄😄
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Artistatheart and Moissy, sorry to hear about your abnormal liver numbers. I will hope and pray that that has absolutely nothing to do with any kind of progression. I know it's hard, but try not to let anxiety creep in as you wait to be scanned. Seems like some new symptoms are being posted lately, like pressure headaches and now the liver number increase. This treatment is still new and could all be se for all we know, or as you said, Moissy, a drug interaction. Hopefully nothing serious.
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Thanks Hummingbird! I knew coming here and reading for awhile would sooth my nerves and soul. This site has become a lifeline to me as nobody else I know has gone through it like you ladies. I am so grateful! They have scheduled a new scan this Thursday and we will see whats going on. Thanks Myra and Hummingbird!
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yes! I have had pressure headaches in the mornings. I've also been noticing a real increase in joint/back stiffness beginning week three of Ibrance. Don't know if anyone else is getting this? My stiffness gets better during my off week.
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Hummingbird - thanks for the good advice as always. How are things going with your mom?
Artist - Keep the scanner warm for me. I'll be going in the day after you
Wishing you all the best and hope everyone else is well! -
Hi ladies, we all like to hear good news so I thought I'd update with some!
This past Saturday, I had a brain MRI done after my MO was concerned about me with having 3 weeks of increasing headaches. Kind of felt like the "pressure headaches" that some of you have been experiencing. Started out as just bothersome, but then after 2 weeks, I had to take something because they were getting much worse. I am not one prone to headaches at all - maybe had 10 my whole life! I was suspecting the Ibrance, but my MO wanted to check for brain mets. Well - just saw my onc and got great results, MRI was normal. YEAH!!!! I am on my week off of Ibrance now, and NO headaches. So we are just going to see what happens when I continue with it. I will be starting my 5th cycle on Friday - still at the 125mg dose. My blood counts are OK for that. Interesting that these weird headaches are being talked about here now from a few of us. Let's keep posting about this so we can compare. Maybe this is a SE of Ibrance.
Moissy, thank you so much for thinking and asking about my Mom. She needs to go for additional biopsies because although her breast biopsy shows definite breast cancer, she also had a pet/ct scan which showed many lymph nodes all over light up and there is a suspicion of lymphoma too, plus that mass on her pancreas. Her blood work doesn't show any lymphoma or pancreatic cancer, but still biopsies have to be done to rule this out. She can't go to the major cancer center I go to because it's out of network with her insurance. She is going to her local, small cancer center and everything takes much, much longer. So she won't actually begin any treatment until Dec. 3, by the time results come in. I'm so concerned about the wait, but we have no choice. At least we finally met her oncologist and she is very caring and comforting and my Mom liked her very much. Me too. And I think that's half the battle! i will be thinking of you and Artist on Thursday - Good Luck with your Scans!!!!
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that's great news Hummingbird. Myra.
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That is great news Hummingbird! Instant anxiety relief feels soooooo good. I am positive the headaches are the Ibrance. I also got the weird sinus symptoms someone else mentioned. I was never prone to either before. Your poor Mom, waiting is the worst! Not to mention being at the mercy of your insurance company. At least she got an Onc she feels good about. That is huge. I'm still a little luke warm about mine but only have a choice of 3 in my town. Might be awkward to switch. Thanks for the best wishes all and I'll be thinking of you Friday Moissy!
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Hummingbird, lymphoma can be very treatable - my mom has had it for years, and she never lost her hair or had any real side effects with the treatments she had at Mass General, either. She has been very happy with her doctors and nurses also - You are right, that is a big part of it, so I'm glad your mom found someone she's comfortable with. Hope that your headaches improve, could be you need stress relief given the stress with your mom? Will keep you both in my prayers.
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hummingbird that's great news! I just saw MO today and told her I was nervous about these pressure things I feel in my head. I didn't feel any today. She assured me I didn't need to worry about this.
She discussed my recent scan with me and said the report said I have old mets that are healed??? She said I don't understand what they are seeing. I cannot wait to get to DFCI in Jan. I had BC 18 yrs ago and this is not from then. So I have no clue what the heck this radiologist saw but if I had Mets and they healed I cured them without drugs. LMAO. On that.
I hate going but looking to Thursday RO Appt. they are planning on doing rads to the 3 mets for 10 days.
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Artist and Moissy I hope your scans are good and don't reflect the rise in liver enzymes. My blood tests for liver enzymes were normal but my scans showed liver mets. Although Ibrance/ femara wasn't the answer for me it did keep my TM from going up a lot. I was off all meds the last 3 weeks and the increase in my TMs for these 3 weeks was huge. Much more than while I took the meds!!!
Always wishing all success on whatever drugs they're given! Praying for everyone to be NED
BABS
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Thanks babs, me too! I hope your new tx is still easy to tolerate. Go find a great bagel store with tons of grains and flavors!
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Hummingbird - Glad your mom has found a doc that she likes. It's so stressful working out details with insurance companies.
Glad your MRI was normal. Yay!
Babs - I appreciate you sharing additional info on your situation. Thanks for the good wishes!
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You can add me to the list of headache sufferers. I've never been one to get headaches so I have very little tolerance for them. It's been the only serious side effect I've experienced to date. I mentioned this to my MO and she thinks they are estrogen withdraw induced migraines. She gave me a rx for neurontin. While it initially helped, last week I had another 4 day migraine while taking the neurontin. I'm sure the Ibrance has something to do with it.
hummingbird: I'm glad you had a clear scan and have found an onco that you and your mother like. You were due a little good news!
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Good morning ladies, I don't get migraines, but I do get these little short lasting headaches right after I take the femara. I thought they were related to that med. Myra.
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Hello ladies,
New to the forum today and I'm finding your comments encouraging. Diagnosed with Stage 1 ILC October 8 and Stage 4 bone METs on November 2. Yikes! Starting Femara and Ibrance next week. Really appreciate the information on side effects and see that many of you have been managing this for a number of years while leading at least somewhat normal lives.
Have these drugs caused any mood swings for you all? I'm not a crier, but this last few weeks have been hard on my practical demeanor and now puffy eyelids. Some days Prozac has appeal...a little "Don't worry, be Happy" would be a relief.
Thanks for the posts!
Iwrite
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Iwrite, if I'm reading your post right, you just found out you have stage IV bone mets two days ago. Mine was diagnosed in January 6 years after my initial diagnosis and treatment. It is no surprise that you are having mood swings. I still go through times when my emotions are raw and I can cry over anything. Other times I manage much better. I wouldn't worry about it right now. I think it is common and you need to let yourself have a good cry when you need it. I am taking Wellbutrin but have been on it for years so I'm not sure what it would be like without it. I'm in the third week of my first cycle of Ibrance. So far, the side effects have been quite tolerable. I wish you the best.
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Iwrite! Girl. I do not know how you're managing Femara without some kind of antidepressant or antianxiety meds. Since starting this regimen, I tend to get pretty edgy. I am on Zoloft, and when I see my onc's np in the next few minutes, I plan to mention this. Abilify was suggested by a friend to add to my current crazy meds.
Other side effects I've experienced: loss of taste, loss of some hair (including lashes), some diarrhea, and crazy dreams.
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Hi Babs,
Similar to you, my TM's skyrocketed after being off Ibrance/femara for over a month. Puzzling that my TM's were decreasing on Ibrance/femara, but the scans showed progression in bones, liver, etc.. so I am now on Xeloda. Please let us know how your trial is going with the new drug that is supposed to be easier to tolerate than Xeloda, sounds promising - hope you have great results! I am on the 7 day on 7 day off schedule with Xeloda, hoping I can tolerate it, will know after a few cycles hopefully.
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Welcome Iwrite. I am so sorry to hear of your recent stage IV dx, but very glad you have found this forum. It's a great place for encouragement and information.
I had the same experience in the summer of 2014, dx'd with a lower stage of bc that quickly changed to stage IV after bone mets were found, so I very much sympathize with what you are going through. Like you, I am not much of a crier, but for the first months after dx I did a LOT of crying. And yes, all of the AI drugs can cause depression/mood swings as they reduce estrogen and progesterone. I think of it as super menopause. Many of us stage IV gals take antianxiety or antidepressant meds, so a little Prozac or similar med may help you too.
Please know that this time after initial dx is really, really rough. It gets much better with time as you adjust to your "new normal". There are many ladies here on the forum that have been living with mets for 5 and more years and new drugs being developed all the time, so let yourself feel hopeful as you adjust to your dx. Life may never be the same as it was but there is still a lot of living to do.
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Thanks, ladies. Well it was very good news about my normal brain MRI, but now my tumor markers from yesterday are in and they have increased. Not that they are very high, but I would have loved to see a decline to feel more confident that the treatment is still working. I've had only one cycle (cycle 3) where the markers fell a little - after doubling before that. I'm beginning cycle 5 on Friday. Oh well - at least I got to be very excited about some good news for a day! It was nice. Anyway, such is life with mbc and I'm used to the roller coaster ride. It's a beautiful day and I won't let tumor markers ruin it for me.
lwrite, welcome! Sorry you have to be here but you have come to a place with tons of information and support. You just need time to let this all settle and sort out. You will feel much better as you go along. It's a terrible shock in the beginning. Good that you have already learned that so many of us are doing well and this Ibrance/Femara combo is pretty easy to handle. Sending a hug and wishing you a very long, successful time on this treatment.
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3Holly
I started GDC0810 on Thursday. I take 3 pills in the Am. The first few days I took them after eating a toasted dry bagel. I felt a little queasy. Since I am not a bread eater( I am a much healthier eater) the last 3 days I took the pills after my usual breakfast of berries and sliced almonds. When I get queasy I pop a tums or a cracker. All very tolerable. Now hoping for great results!!!! On Ibrance/femara my TMs kept rising and after 7 mos had progression to bones and liver.
Will keep you posted
Babs
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Babs,
Thanks for that update, and hope the queasyness subsides and that you adjust to the pills. The Xeloda pills are similarly a bit difficult to digest, but reducing the dose from 3500 to 3000 mg seems to have stopped the nausea, though i still get a burping disgusting feeling (Tums helps for me also, but onc said to wait an hour before or after the pills before popping the Tums). I am trying to make sure I eat small meals and have food in my stomach 30 min before the Xeloda. Good luck with your new treatment, hope it is a great success for you!
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Welcome IWrite, I've been dx'd for a little over 3 months and I still get a good cry in maybe once a week depending on a lot of factors. Sometimes something unexpected, happy, sad, anger producing can set me off. I may look into an anti-depressent soon. Listen to jobur and give yourself time to adjust, it does get easier (except when it's not!) LOL! I have been doing pretty OK on this combo regarding SE's but suddenly today I am feeling very breathless with pounding heart and super fatigue?? Hopefully it is just lack of exercise lately. Hope it subsides soon. Might have to go for a walk or hit the gym for some light workout. 3Holly good luck with the Xeloda pills. Let us know how that is going for you.
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artist at heart, I would talk to your onc about the breathlessness, please don't ignore it.
You are probably just exhausted from the lowered blood counts, or it could be anxiety which we all experience, but breathlessness can also be a symptom of something else, so I would definitely tell your oncologist. For example one reason could be blood clots, although I doubt you have them since it is not a common side effect of the drug (however, it is a more rare side effect, and I did get blood clots on my lung after 6 cycles of Ibrance/letrozole, and they asked me about breathlessness since it is a symptom of blood clots). When they found the blood clots on the scan, I was 1/2 way home, but they told me to come back in and said I had to immediately get blood thinner. Hopefully you are just exhausted, but I'm sure your oncologist would want to know about the breathlessness. Hope you feel better soon!
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Thanks everyone for the warm welcome!
Good to know that it's normal to be a bit flipped out in the early days. I go back to get my BRAC test results next week and start treatment and will ask about antidepressants. It's encouraging to know that it's possible to get used to this new life things and things do even out.
Have your family members found the forum for caregivers helpful?
Thanks!
Iwrite
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Iwrite, welcome to a great group of ladies! The shock of stage 4 was the hardest thing for me to handle. My onc ordered me Xanax in the beginning and it helped a lot. I describe it as constantly pushing down panic. As time went on, I did not need it. I usually take a Xanax on scan days, I am not afraid of the scan, just afraid of what it may show. I get edgy the whole week before the scan and the tears fall very easily. I just finished my 7th cycle of Ibrance/ Femara and am doing well. Last weeks scan stable. I'm now back to work full time as a nurse and my life is pretty much the same as it was...minus the doctor appointments of course
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Thanks 3Holly, I would definitely take your advice but my scans were pushed up to tomorrow as my liver enzymes were high. So no more waiting. I am glad they are coming right around the 3 month mark instead of waiting until the end of the month as previously planned. I'm feeling better this evening but know I need to get moving as well. Working full time sitting most of the day takes it toll. I am midway through my third round. Hope it's not blood clots. Did you have to stop the combo when it happened to you? Good scan news Lynnwood!
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Celeste, I am so sorry for your progression. I don't have any experience with the drug you are talking about, but I'm plenty familiar with the disappointment of another failed medicine. Liver was the worst for me. I know you will bounce back from this low.
I'm on page 85, so a little behind here. I hope you are already feeling better.
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artist, glad you are feeling better, and the scans tomorrow should confirm there are no clots. Anxiety for me can cause breathlessness sometimes, too. I stopped the combo due to my scans showing progression, not due to the blood clots. Good luck tomorrow!
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All,
Are you on Medicare? Although I'm not on Ibrance, my oncologist has said it may be my next drug, so I plugged it into my list of medications yesterday as I was online checking out Medicare Part D plans for 2016. According to the two well-rated plans I compared, I would reach the "catastrophic coverage" level within a month or so, after which my out-of-pocket monthly Rx costs would be nearly $800. Add that to my oncologist's current $410+ monthly bill after insurance, and my spouse and I will burn through our hard-won retirement savings in short order.
Am I doing something wrong on the Medicare site, leaving something out, not taking something important into consideration? Am I idiotically optimistic in assuming I'll be on an expensive oral drug as long or longer than the four-year run I've had with Faslodex?
Perhaps I shouldn't be jumping the gun like this, but I can't help it. I'm trying to plan and would welcome input.
Worried (and it's treatment day),
Tina
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All,
Are you on Medicare? Although I'm not on Ibrance, my oncologist has said it may be my next drug, so I plugged it into my list of medications yesterday as I was online checking out Medicare Part D plans for 2016. According to the two well-rated plans I compared, I would reach the "catastrophic coverage" level within a month or so, after which my out-of-pocket monthly Rx costs would be nearly $800. Add that to my oncologist's current $410+ monthly bill after insurance, and my spouse and I will burn through our hard-won retirement savings in short order.
Am I doing something wrong on the Medicare site, leaving something out, not taking something important into consideration? Am I idiotically optimistic in assuming I'll be on an expensive oral drug as long or longer than the four-year run I've had with Faslodex?
Perhaps I shouldn't be jumping the gun like this, but I can't help it. I'm trying to plan and would welcome input.
Worried (and it's treatment day),
Tina -
Tina, Pfizer has several plans to assist in paying this very expensive drug. You can get a copay card for the first 6 months where you only pay $5.00. I assume you would qualify on Medicare. Check it out on the Pfizer website. Good luck.
Artist, good luck today with your scans. You are in my thoughts.
Myra
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Artist,
thinking of you today, praying for good scans!!
Alissa
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Myra,
Unfortunately, patients who participate in state or federal insurance programs, including Medicare and Medicaid, are not eligible for the co-pay or any other assistance in paying for Ibrance unless they can demonstrate "financial hardship." It's another worrisome example of a drug company taking advantage of Medicare's not being permitted to negotiate prices, and thus charging anything it pleases, soaking the government and impoverishing patients.
Oncologists, patients and others are beginning to realize this and protest. However, hope of rectifying the situation appears to be far in the future and may come too late for many people with advanced cancers who must make the choice between a promising treatment and penury. Do we deplete our savings to get a few more months of life, then leave our spouses broke as well as bereft?
Tina
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Tina2--isn't it also true that chemotherapy-like infusion chemo (I never had it-thus my ignorance) is covered completely in many policies as they consider it a procedure, whereas popping an Ibrance daily is a prescription?
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Ellelou,
As far as Medicare is concerned, Medicare Part B covers inpatient/in-clinic procedures involving drugs: infusions, injections and the like. I don't know about "completely;" it doesn't mine. Part D, the prescription plan, covers oral drugs that one takes at home. Obviously in the latter instance, I use the word "covers" loosely.
Tina
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Tina, see if you qualify for a drug patient assistance program for Ibrance if you do get it prescribed. Even if you don't qualify off the bat, write a letter of appeal to try to get free drug. Letters of hardship count a lot towards the pharma co team responsible for distributing drug.
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Well after two months on Ibrance with a reduction to 100mg and tumor markers jumping up the first month,happy to say seen a drop in TM this month.My wbc is down to 1.8 on this dose reduction praying he will not do a dose reduction again. Has anyone had problems with swallowing it burns going down and feels like food is getting stuck? Drinking water has a burning feeling going down.Had gerds for years but not like this.
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Tina, I am not on Medicare but know about all these med bills wiping you out. My insurance company has approved my Ibrance for one year then I don't know what happens. I'm not going to worry now as I don't even know if it is working yet....Thanks 3Holly, I am done and waiting for results on Monday. This is different than anxiety for sure. Wonder if it's related to my blood pressure suddenly going up too. I hate waiting, hate it!
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I am new in this board. However was following silently. Liked to share some SE experience as sallyk experienced. I had similar problems of swallowing and burning going down and felt like food is getting stuck. Couple of times even water got stuck while taking medicine and I felt I am dying from this. All these happened when I was in higher dose of 125 and 100 mg and had very low WBC count like 1.8 and 1.9, specially at 3rd week of the cycle. However at lower dose of 75 mg, swallowing problem reduced and feeling much better. Seems its Ibrance effect, it induced acidity with abdominal pain which was bad too.
Hope you will feel better with next cycle and with time it will be adjusted.
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Junjun thanks for the reply there has been so much going on theses last 2 months getting scared of these SE. With the 125mg TM went up 70 points with coughing and low wbc counts. Now with the 100mg no coughing but sore tongue with the swallowing issues. Did have the booster shots for wbc but still dropped to 1.8. Good thing is TM went down 15 points. See the dr. Monday will see if I can stay on the 100mg.
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I'm new to the boards but am just starting Femera/Ibrance. I have bone mets and one in my skull that is possibly starting to invade the outer part of my brain. We are praying the these miracle drugs can shrink them. Guess I just wanted to jump in on the conversation, hoping to get more information, and maybe, just maybe, a little hope.
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Kristen, this is a good place to come for support, information, and hope. Best wishes to you.
Sally and others with a cough, have any of you received specific information from your doctors aboutthis being a side effect of Ibrance or Femara?
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Junjun and Kristin-
We want to welcome you both to our community here at BCO! You've come to the right place for support. Junjun, we're so glad to hear your issues resolved after changing the dose. And Kristin, we hope that this treatment proves to be successful for you.
You're both in our thoughts!
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Sallyk, did you have neulasta shots? I thought that neulasta is not given for Ibrance low WBC, but rather a break and possible lowering of dose.
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woke up with blood in my mouth. Can't see where it is coming from. Of course, this is while I am on a train to NYC. Could this be a side effect of the ibrance? My blood work was fine on Tuesday, at least there were no red flags. Is this something I should call my MO about
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Raine, how much blood is there? Sometimes I have gum bleeding, but nothing you would notice just waking up. After teeth brushing. This SE is listed on the Ibrance website. I would call MO just for my own well being. Myra.
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Thanks Myra, I went to the bathroom at 5, looked in the mirror and my teeth were red. My gums generally don't bleed even when brushing and flossing. I didn't really want to call, I didn't let him know I was traveling. But, I suppose it would be prudent.
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Raine, my first cycle of Ibrance my gums and mouth were very sore and bled rather a lot when I flossed for about a week.
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so happy to have found this thread! I just started Ibrance 11/4/15 and letrozole 10/27/15. I have been getting pressure headaches too, mostly in the morning (I take Ibrance at dinner). Thank you for all your advice! I'm a newbie in this! Diagnosed de novo in March 2015. Mets in my T3. No chemo, no mastectomy. Was on tamoxifen, but had ovaries out so started letrozole/Ibrance. Any advice appreciated!
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Alice1derland, welcome! You will get lots of support here as well as valuable information. The ladies here are wonderful. Sorry to hear that you also are getting the pressure headaches that a few of us have been mentioning. But for the most part, this treatment combo is pretty easy to handle. Wishing you a long success on Ibrance
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Alice, my were in the morning too just after rising. The headaches were infrequent and ended fairly shortly, as did most of the other SE's I experienced As I get to the end of the cycle I do experience pretty bad fatigue....
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On 😈
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Welcome Alice! Great ladies and great advice here! I read the whole thread when I began treatment. Getting ready to start cycle 8 and doing well. Very effective treatment for me so far
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Medicare update: I've discovered that my oncologist has no patients who are taking Ibrance and are on Medicare. I told his nurse of my discovery of what out-of-pocket costs would be on Medicare Part D plans in 2016. She checked my claim with the clinic's insurance maven, who corroborated my findings.
I know there is a current effort that proposes the law be changed to allow Medicare to negotiate prescription drug prices. Considering the immense financial and political clout of the pharmaceutical companies, I am not hopeful that this will occur anytime soon.
Tina
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Way to go Lynnwood, keep it up! Sorry about the Ibrance denial Tina, bureaucracy sucks!
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Artistatheart,
I haven't been prescribed Ibrance, so I wasn't denied. I was just researching costs!
Tina
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Oh! Sorry for the misunderstanding. Well, thanks for the good infor for others!
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Artist and Moissy, thinking of you and hoping to hear good scan results soon!
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Thanks, Hummingbird. My scan had to be rescheduled for mid-month so I'll be waiting a little longer now.
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Hello everyone,
I'm joining the Ibrance group now. I'm 10 days into taking it after being on Tamoxifen for about 10 months before it ran its course. My last CT showed small nodules throughout my upper lung fields (which are new). Too small to biopsy but assumed to be more mets. Also feeling SOB with any activity.
I'm tolerating the Ibrance okay so far. Headaches, stomach pain, and fatigue mainly. I will have my bloodwork done this Thursday. Fingers crossed that it's okay.
Laura
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Golfingirl - welcome to the Ibrance thread. Sorry to hear that you might have had progression. Hoping Ibrance works for you for a very long time. Good Luck with your bloodwork on Thursday.
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I have not been on this thread much, but have been on Ibrance/Letrozole for about 8 months now (although I took one month off to feel good for a marathon, and I usually have had to take 2 weeks off between cycles for low WBC count.) I had a PET scan after my first 3 months, and it showed a slight decrease in size of my two tumors (in bone). We waited for 5 months, and I just had another scan last week. This time I still just have those two spots, and one is the same size, but one is slightly increased in size. I don't have tumor markers in my blood, so that is no help to me. I meet with my oncologist tomorrow to discuss. She indicated that she is not sure if this means I need to move on to another drug, or if we wait a few more months and do another PET to see what is happening. What do you ladies think? And if I need to move on, what is new and exciting for my next treatment?
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Update, I spoke with my oncologist's nurse on the phone just now, and they are thinking I do need to change to a new drug, but they don't know what yet. We will discuss tomorrow. Is there anything out there that is more targeted, kind of like Ibrance, so that I can continue to feel well? If not, what is another good option? I have only done Tamoxefin and Anastrozole in the past, so I know there are still other options, but I don't know what other women like?
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Springlakegirl--I am on Ibrance/Femara as my only ever treatment. Stage iv de novo in June. I had a spine MRi just be starting treatment. Four months later I had my second MRI and the mets that were largest in June looked like they had slight improvement but some smaller ones looked more active. So mixed results I guess. My MO said we will scan again in 3 months. He doesn't use TMs. I did look at my Alkaline Phosphatase on my blood work reports (4 of them) one before tx started and 3 since, and the Alk Pho has decreased 5-8 points each time. There was some discussion up thread about declining Alk Pho levels are a sign of declining bone met activity. So, I am focusing on that as positive news for me. When I posted about my mixed results scan several ladies told me that had happened to them and the general consensus was that bone mets are craazzy and hard to read.
My MO doesn't use PET scans for me just MRI's. Trying to spare me radiation I guess. Do you have copies of your blood work?
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Update, I spoke with my oncologist's nurse on the phone just now, and they are thinking I do need to change to a new drug, but they don't know what yet. We will discuss tomorrow. Is there anything out there that is more targeted, kind of like Ibrance, so that I can continue to feel well? If not, what is another good option? I have only done Tamoxefin and Anastrozole in the past, so I know there are still other options, but I don't know what other women like?
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springlakegirl- You are obviously ER+, so there are still options before chemo. I had 3 1/2 pain free years on Faslodex. I could have stayed on it happily forever had I not had progression. But over 3 years, I guess I shouldn't complain. Very few side effects for most women, it seems. It's an injection that you receive once a month, so quick and easy. If you have a good nurse, you can hardly feel the shots. Good luck!
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now on my 4th cycle of ibrance 125 mg, I've lost a little hair and get small nose bleeds at end of cycle. All other side effects went away. Tm stable at 52. Good luck to all. Marilyn
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Thanks Hummingbird, it was good news for me today! TM's have been cut in half, tumors have shrunk "substantially" and all metabolic activity has decreased. She said the liver enzymes elevation could be a number of things including meds but just to be safe I am going to see a gastrointerologist. But we are not switching meds. Yay! All in all a very good day. The relief is indescribable.....Hope you are well as well and best to all. Moissey, So sorry you have to wait longer, that is the worst. We'll be thinking of you. Welcome golfingirl. So far so good with me on this combo. I have experienced several SE's but they have changed through each cycle which is weird. None of them have lasted very long or been severe at all. I do notice by the end of the Ibrance cycle my fatigue is the worst but not terrible. I hope this combo works for all of us for a very long time....
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Artist - Yeah!!!!!!!!! So happy to hear your fantastic results!! Do something fun - after that anxiety of scans, it's good to focus now on something you really enjoy. Yes - That is tremendous relief!!!
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Hummingbird, I am going to make some jewelry and play my guitar! Something that caught me of guard today was how emotional my DH got when he heard this news. He is so good at being the strong rock of support for me but I know him well enough to know he is experiencing extreme stress too. He had a little emotional break down for a few minutes, which reminds me that I need to take care of him too.
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Artist, GREAT news for you! I know what you mean about the relief, it really is a heavy load we carry, but waiting for scan results is the worst! Hope you do something to celebrate! Golfingirl, welcome! Lots of great information and support here
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Springlakegirl, What Sandilee said. I started on Faslodex in April and added Ibrance in July. My last scan in July (before I started Ibrance) was my best so far. I was barely stable during 9 months on Anastrazole prior to 1st progression. Seems like some gals get years out of Faslodex alone, many with minimal or at least tolerable se's. Good luck on whatever is next for you, may it work well for a good long time.
Welcome to Ibranceland Golfingirl! Best wishes on your first blood work.
Artist, Congratulations on your good results! Give that DH an extra tight hug tonight. I'm afraid we sometimes forget how hard this is on our spouses.
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Artist - So excited to hear your great results! That's fantastic! Sounds like you have one great hubby who loves you immensely!
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Artist, congratulations on your scan results and being in a relationship with so much love. I too know what that's like! Myra.
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Hey ladies, I feel so confused with my recent results!! I am almost finished with my 3rd cycle of Ibrance/Letrazole and my onc has scheduled a PET for 11/23. She can manually palpate the mass in my breast and every month it has measured 7(mm I would assume???) well, on friday it was measuring 5x5, so obviously smaller, finally something good!!! Well, I just received a phone call with my tumor markers and they have once again gone up!! Started at 36, then 46, now 56. I am so confused and just now anxious for the PET. I just finally got to feel some relief and it only lasted 5 days!! If the mass has shrunk, the Ibrance should be working right!! No one told me menopause would make me so emotional lol!!
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Tina,
Regarding Medicare Part D and expensive therapies such as Ibrance, I happened on to this video on tips for open enrollment. Possibly of interest, Medicare Advantage Plans where drug coverage is part of the plan. Don't know a lot about this, just starting to try and educate myself as I will be eligible for Medicare in 2016.
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Mama2,
Try and relax and wait for the scan & results. From what I read here, TMs can do funny things on this drug. I would think having a palpable mass that is shrinking would be the best indicator of your response to this treatment, and that sounds like it has been good. Is this your first tx? Remember, there are other treatments and a person may not respond to one, but the next one can work wonders.
Yeah, menopause is a #itch. And this disease and it's treatment is an emotional roller coaster anyway. Hang in there!
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@Jobur, thanks for the encouraging words!! Yup, first tx, just dx 06/15 de novo with mets to the liver, so still trying to sort everything out in this new phase of my life!! hugs to everyone!!!
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Moma2, I am the queen of mixed Ibrance results! Feel good, TMs up, next TMs down, scans good, so good that MO reviewed with RO, TMs one up, one down. 2 weeks new PET scan so we shall see. That is why I named this experience Ibranceland. You never know where this roller coaster will go next. Hope that helps. Myra.
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Mama2, I'm like you (de novo-6/15) and I am on my 6th cycle and got mixed results (from an MRI a few weeks back) with my spine mets. My MO said this should work for you so we are sticking with it. My MO does not use TMs. I had a mastectomy before I knew I was stage iv so no tumor to monitor. You couldn't feel it anyway. i think that yours shrinking is great feedback
We've checked into Ibranceland and we are staying put.
Ellen
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Yes Mama, My Tm's went up at the end of the 2nd cycle although my breast tumor shrunk quite a bit. Now I had high liver enzymes but the scans were good and TM's are way down. Like Myra says , Ibrance roller coaster. Although it is hard, also listen to Jobur that there are many places to go besides this med regiman. So many of these ladies have been through years and many treatments that work for a long time. I am the worst person to advise not panicking over a "bad" test reading. But just learned my first lesson that is is not necessarily bad news! Thanks all you ladies for the happy dances and cheers. I makes my day. Yep, my DH is a keeper!
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artist,
So great to hear you got positive news! Also glad to hear you husband is so supportive, it makes such a difference to have such support, we all need it. My hubby is bringing home a movie tonight to lift my spirits (in bed a lot lately with spine pain). These seemingly small things can make such a big difference.
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Thanks Holly, I am so sorry your spine is giving you so much trouble. It sucks when you can't do the "regular" things. How people do this without a supportive hubby just makes me want to cry. Let me know if the movie is good!
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Holly - so sorry to hear that you have been having pain. I can't remember - have you moved on to Xeloda? Or are you still on Ibrance? Sometimes things move quickly here on this thread - I try to keep up. Sending hugs and hoping your pain subsides. Enjoy your movie tonight!
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So I met with my onc today and we decided on Afinitor/Aromasin (not sure if I'm spelling correctly, but you know what I mean!)
I feel good about it, although I wish I had been able to stay on Palbociclib longer, but not much I can do about that. What side effects have you ladies had on these drugs? -
Springlakegirl - I was on the A/A combo for 5 months, 10mg per day, when I was first diagnosed metastatic. I had the common se of rash, a few mouth sores, fatigue. But in my 6th month I became short of breath due to a bad inflammation in my lungs from the drugs. I had to stop the treatment. That se is more rare, but can become very serious. I don't mean to frighten you, but I want to be honest. On the whole - before that happened - it wasn't too bad. There is a great thread on afinitor/aromasin that can give you more information. Good luck. Wishing you a long success on A/A.
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Thanks Hummingbird! I'll look it up.
If anyone else has experience with A/A, please let me know. I'll check out the other thread too. Thanks everyone! -
Good luck with A/A Springlakegirl. That will likely be my next tx. Let us know how it goes.
Hummingbird, how are you and Mom doing?
Holly, Sorry you are hurting, hope the movie with hubby made you feel a little better.
I just got results from my first PET since starting Ibrance in August. Rad report says minimal residual metastatic disease with highest SUV 3.07! Xgeva and Fas shots went well and behind me (literally!) for another month. Happy dance time.
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I must say that everyone on this thread is such an amazing source of help, support, and information. I'm so sorry I had to leave you-but not really, I keep checking back to see how everyone is doing!!!!
Babs
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I started the IBrance 125 mg dose 2 months ago and took it for 14 days, but had to stop it because my white cell count fell too low. Then the next round I took the 100 mg dose for 14 days and had to stop that as well, again for a too low white cell count. During the second round and beyond I have experienced significant nausea and even had to visit the E.R. for the nausea, stomach pain & dehydration.
I had been using Zofran for the nausea, but it had no effect. Then I tried Phenergan, but it is too sedating, so my oncologist has now prescribed Marinol. And oh geez! is that expensive. Will be calling manufacturer of the Marinol for patient assistance in the morning.
Next week I'll start the 75 mg dose and hope things will go better this time.
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- Dear Jazzy, welcome to Breastcancer.org! We hope you find the information and support you're seeking here in this wonderful community. Until other members post with their personal experiences around the symptoms you're mentioning, here is an article from our main site that you may find helpful: 10 Ways to Manage Breast Cancer Treatment-Related Nausea
- Let us know how it goes next week with the new dose!
- Best,
- The mods
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Hooray jobur!!!!! Doing the happy dance with you!!!! Myra.
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it is wonderfully reassuring to continue to hear of good responses on Ibrance. I feel for those who are struggling with SE and pain and less positive results. I'll have my second scan in about a month. TM went up a tiny bit last month, but MO considered it "stable."
Has anyone had a conversation with your doctor about the MCV count? Mine just keeps rising. All other counts are acceptable. I'm not sure I understand MCV. I know it's related to anemia. Info??
Thanks to all for information and support. What an amazing group of women! So positive and inspiring
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Welcome to all the new folks on the thread!
Artist and Jobur -So glad to hear your good scan news!
Babs - Great to hear from you. We love it that you are still tracking here! Were you able to connect with anyone else who is doing the same trial as you?
Jazzy - Sorry to hear you have suffered so many side effects. What are you taking with Ibrance - Faslodex or Femara? I've had to drop my Ibrance dosage down also. I've had fewer side effects on the lower dosage. Hope they are able to get your nausea under control.
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