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 when I called for the Pfizer discount, only private insurance is eligible. At first I was told it would cost 9000.00/month. Medicare and Medicaid is not eligible for the discount program. There are other programs you might qualify for. Your MOs office should be able to help you. When I heard the price, I freaked. Myr
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Medicare part B is paying for my Xeloda because it is a chemo drug not available in infusion form - is Ibrance considered a chemo drug I wonder?
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Sorry, I have no idea
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Apackoftwo, My doc said Ibrance is not a chemo drug.
Daisylover, thanks, I am going to e-mail my doc since he didn't mention the Prilosec. I am at Dana Farber, was your trial at Dana Farber?
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I believe Medicare is covering Ibrance now. It took them a little longer, but should work now.
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apackoftwo - where were your headaches located and were they every day?
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Romansma - Ah, big sigh of relief
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Hi SusanAnn - they were mostly in my forehead and top of head but very bad and the pain would make my neck and shoulders tighten up and be sore and painful too - not every day - in the beginning maybe once a week but progressed to several a week - my docs say this is not a usual response/side effect - part of my frustration in dealing with this has been that the side effects I experience are often not what everyone else is having - I have also taken a break from Zometa due to side effects - seems my body doesn't like the bone meds
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Oh Romansa,
Please keep us up to date on your beloved canine pooch...I truly understand his health is vital to your rest and emotional health...Wish you the very best . Carolyn from Music City
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Ah thanks for thinking of her. She seems to be doing better. She's still on medication and I'm watching her careful, but I think she is recovering. I'm so relieved!
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I start on Ibrance & letrolzole tomorrow, after aromasin and then Faslodex. Great info from all you ladies...... Here's praying for all of us....
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Welcome GDG. Be sure to take it with food, otherwise, it can cause nausea.
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I have taken Ibrance for 1 week and Femara for 9 months. So far there are no side effects. Has anyone noticed hair loss?
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I have Medicaid and they are covering ibrance. The Pharmancist also explained it to me like it was a form of chemo drug. I hope everyone gets it covered.
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I am so glad to hear it is now being covered by government insurance. Welcome GDG and good luck. Duck 1255, have not noticed hair loss, but since all this started, it is definetly not as full.
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Daisylover,
My onc says it doesn't matter whether it's prilosec, tums or zantac, but try to take it 12 hours away from the time I take the Ibrance/letrozole. Interesting that we are both at Dana Farber, but you got completely different info (you said they told you no prilosec whatsoever) - also Packoftwo said the pharmacist says only 4 hours gap. Anyway, I have not been following the 12 hour thing since I didn't know about it, so hopefully it was not totally blocked for these first 2 weeks.
Prilosec is a time release antacid,so I wonder if it releases for 24 hours or 12.
I will now have to switch to taking the Ibrance either morning or night to get the 12 hour gap. I had been taking it at lunch which was working out well since I don't really eat breakfast and dinnertime can be hectic. Wish I could get off the Prilosec, but I have needed it -especially at night to sleep - since my first radiation treatments, and where I usually take it late in the day, not sure if a switch to the morning would prevent it working at night when I most need it.
Good luck to those who are starting out!
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3Holly, yes, I did the feasibility trial at Dana Farber, with Dr. Mayer. They were very thorough. The trial paper work refers to proton pump inhibitors but does not explain how they interfere... I can email you a copy if you would like.
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That is good to know about the prilosec, I take it twice a day. Guess I will have to visit with Onc about that.
I am in hopes I hae been approved. CVS pharmacy called yesterday but I was at work still.. So still waiting!
Redroan
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Akevia - how is it working for you?
I'm not on Ibrance, just Faslodex and Xgeva, but am hoping it is a viable option when/if the Faslodex stops working, so I'm stalking all of you with dedication.
Thoughts and prayers for all
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Can any CVS Pharmacy get Ibrance we were told it had to be a specialty pharmacy. My first came from Cleveland Clinic's Pharmacy but our local CVS would be a lot more convenient
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I was told the same. Mine comes from a specialty pharmacy too
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Pretty sure it needs to be a specialty pharmacy. I know Afinitor was specialty and I'm sure Ibrance is the same.
Happy Sunday Funday, everyone! I have a houseful of boys that were up at the crack of dawn. As soon as my painpills kick in I'll be flippin' flapjacks for the guys!
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Have fun Hope. I once had a sleepover for my youngest son, he was 10, he's 27 now...LOL. 15 boys, blankets on the floor, movies and popcorn and up at dawn running around! My neighbors weren't happy, but I loved every minute of it. Myr
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Wow, 15! You are much braver than me! Six 10 an 11 yr olds. I'm getting too old for this. My oldest is 23, so we've been at this for awhile! Still, feel grateful to be here for another celebration!
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LOVE IT!
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Hi everyone,
Thank you, Daisylover, for that info on antacids/Ibrance.
Per Daisylover who is on the Dana Farber feasibility trial ), protein pump inhibitors (i.e., Prilosec) are prohibited, at least on that Dana Farber Ibrance feasibility trial. However, Pharmacist is not prohibiting it nor is my oncologist - however, I think I am going to try to go off the Prilosec and try the Zantac in case.
Here's what the pharmacist at Dana Farber said:
Prilosec : peak release is within 1st 6 hours - but it's in the system for 24 hours and IS A PROTEIN PUMP INHIBITOR (so prohibited on the trial). My doctor says it's OK but should be spaced at least 12 hours from the Ibrance.
Zantac: 1/2 leaves in 2-3 hrs and rest is over 8 hours or 10 hours max - it's NOT A PROTEIN PUMP INHIBITOR AND SHOULD BE OUT OF SYSTEM IN 10 HOURS (so I think this might be a better option if it works?)
Tums: calcium - they bind to a lot of drugs, so should space at least 4 hours apart from Ibrance as well. She couldn't say how long they stay in your system.
IN CONCLUSION: Although I am still not sure if there's a real difference, I don't want to block the Ibrance so I will try the Zantac instead of Prilosec since it only stays for max 10 hours (prilosec is 24 hours and TUMS is unknown) and I will take the Zantac at night since problem is worst at night. Hope it works as well as the Prilosec. -
My Dana Farber MO made me go off Borage Oil - which my naturopath had me on since I was in treatment. That was per Pfizer. Not sure why, but am going to ask on my next visit. I take a host of supplements and she ran them all by the pharmacist at the company and that was the only one they said NO to.
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Terri-c so far so good for me with no side effects. My white count is holding up good so I hope it does the job of getting rid of the mets. My prayers are with you also!!
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So glad you are still doing well. My platelets are still too low to restart. More tests Friday. Anyone have any magic to raise those numbers? WBC is better Myra
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Lenn can you please share what supplements you take that were approved. I did run my list of supplements by the pharmacist at CVS Caremark and he advised that they don't have information on many of he supplements since they were probably not tested. I also take a lot of supplements and am wondering if all of them would be approved. Thank you so much for your information.
Myra for the platelets I take Ashwaghanda, Vitamin C and Astragalus. These were recommended for me while I was on Abraxane and do help with the platelets. I ran these by the pharmacist and he thought they were okay, but as I mentioned above, I'm wondering if they have complete information.
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Shoot, Myra, sorry to hear you are still too low. Need to get my butt up and get to the lab this morning. Should have gone yesterday but just too darn tired! I could lay here all day and sleep! Definitely fatigued. Night sweats are still in full swing. Last night, I was Britney Spear's lead babysitter.....so nightmares are improving slightly .
I need to come up with a few good pranks to pull on my kids for this April Fools Day. Any ideas
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Hope do u mind sharing ur numbers with me? No night sweats just face flushing, and shoot I would love to be Britney Spears! Myr
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Hi everyone,
I am 2+ weeks out (3 pills to go after today) and just got yesterday's blood counts, so I thought I'd check in. I don't know anything about blood counts (will need to learn soon), but the nurse says they are sort of low but she isn't worried since I will have a week off soon, and it looks like I can probably keep going on the Ibrance for another cycle, but I suppose I'll find out for sure at the next visit April 8. I imagine they will check again when I have the Zumeta and maybe they will check the tumor markers (since she didn't give me those, I guess they only checked the blood cell counts). I am rather tired, but I'm happy that the itchy red bumps have disappeared from my arms and legs since I stopped the Faslodex. Some hot flashes but not much, but no other side effects to report so far. Happy April Fools Day, thanks for reminding me - yes, I will have to come up with a good prank!
Here are the counts:
white: 1.7
hemo: 11.3
hematocrit: 33.7
platelets: 237
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Thank u Holly. My problem seems to be the platelets at only 94. They are not rising enough so we will check again on Friday. Myra.
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Myra, I will be praying for those platelets to go up - good luck on friday!
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Thx Pearlady for your suggestions. I ran these past my MO and he advise me not to take anything, since at this point we are guinea pigs and they dont know what will interfere and what won't. I am not very good at being a "do nothing and see what happens" kind of gal, so this is really bothering me. I do not even know if my MO knows what to do next. Now he is thinking that maybe I need a bone marrow bx, but I never had a problem with platelets before. All I know is I hate breast cancer. Myra
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Just left MO office and my counts are back down. WBC at 1.2, ANC .7, and Hct 10.1. On my week off all these numbers had recovered, so it's definitely the Ibrance hitting them hard. Since there was no reports of infection, even with super low counts, we are going to keep going. I'm only a week in to the 3 week cycle with these counts. Can't imagine where I'll be in 2 weeks. Oh well....better be killing me some cancer cells!
Myra, do you know what your platelets were before you started? Hope you get a handle soon. Really want this to work for you!
K, off to have lunch with Ashton Kutcher.
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Hi Hope, platelets were in the 200 range. Lunch with Ashton Kutcher? Can I come....LOL
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Pearl Lady - right now I am taking Kelp, Ubiqinol-QH, Riboflavin, Niacin, liquid K/D... All approved by the Phizer. I am sure if you contacted the company they might be able to help you with information regarding any supplement that might be contraindicated. They want this drug to work and they want people to stay on it. As I said, my DF MO just ran the whole list by them before I started the trial. I was taking 4000 mg of Borage Oil per day which they said to stop. I just spaced out and forgot to ask why?
I am about to go see my naturopath and see what he reccomends taking to help with blood counts and immune system while on Palbociclib. I will then run that by the triall Dr. And share whatever information I get with you all.
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So disappointed that my entire blood work details are in the basement after one cycle. I had to have more labs today and hold off with the Ibrance. My labs were much like Romansa's . so disappointed. However, I feel fine Carolyn From Music City
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So disappointed that my entire blood work details are in the basement after one cycle. I had to have more labs today and hold off with the Ibrance. My labs were much like Romansa's . so disappointed. However, I feel fine Carolyn From Music City
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Thank you so much for your great info Lenn13. The info here is invaluable.
Carolyn, you and I seem to be having the same situation. Yet some have been able to continue on and others not. Let's just hope for the best.
Thank you all. Myra.
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I think our MOs are trying to figure out how to read these counts since Ibrance is so new. If we were getting these numbers on many of the other treatments, it wouldn't be good. However, my MO and her colleagues seem to think that these lower counts aren't as dangerous as they look on the surface. I guess time will tell. I'm wiped out tired daily. Of course, I'm up at midnight because I fell asleep at dinner time. This one is not as easy at it seemed those first couple of weeks. Still, I'm hopeful.
Btw....lunch with Ashton Kutcher was my lame attempt at an April Fools joke. I was so tired today that my kids got through the day without me getting them this year. Darn. Guess I have too stick around till next year!
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Lenn thank you so much. I will contact the company about some of the supplements I am taking. I have been taking Ashwaghanda, Astragalus and Vitamin C for the low platelets from the very beginning. I am into my second cycle of Ibrance/Femara and my tumor markers are considerably lower, so I am thinking that these are okay, but never hurts to confirm.
I was advised to take Maitake Extract and Shark Liver Oil to help boost red and white blood counts. I am going to run these by the company. I have no issues taking Neupogen for the white counts as I have taken this on and off for years and have had no issues and have not read of any life threatening issues with Neupogen. But I have refused to take Procrit and will have to deal with the low red counts differently. There have been disturbing reports about deaths from Procrit and they make you sign off before you take it. No way will I ever take that.
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Very disappointed. I called Pfizer Customer Serivce and was directed to a pharmacist to discuss the various supplements I am taking . They said that they had no information on any of the supplements with regard to Ibrance and that I should refer questions to my onc. Not sure now where to direct questions. Would be very interested in hearing what information others have received as far as what supplements not to take.
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shoot I have no ideas. My MO says he has no idea either. Yippee all. Myra
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I don't either Myra. Very discouraging but I will keep on with those supplements that I have been taking all along since my tumor markers have decreased after one cycle taking the supplements.
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Thank you for your efforts in finding info on this. It reminds us that we are in the very early stages of this drug and so much is still unknown. It is so encouraging to hear that your tumor markers are improving, Pearl, I will have another check in a couple of weeks and hope to report good news!
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Pearl - That is too bad the company wouldn't help you. I would have expected more from them as you know someone in that company has the answers. I am going to Dana Farber tomorrow. I will ask them who they talked to.
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I just posted a list of the medications I was told to avoid. Hope this is helpful
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thank you. Myra.
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Wouldn't you know, just after reporting that I had no problems on the Ibrance, I got extremely exhausted, headache, chills and bad stomach sickness that night and was exhausted the next day.
I had just switched from Prilosec to Zantac the night before, but I'm thinking it probably wasn't the Zantac but maybe I just picked up a bug since I was inside in big crowds with kids on the weekend. Hopefully it was not the Ibrance, but I'll ask the nurse (she said my counts were low but she wasn't concerned). I was extremely thirsty also - must have been dehydrated although it seems like I'm drinking enough. I feel better this morning, so hopefully it will be a good day.
Good luck to everyone with the blood counts.
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Hi everyone! I just got word Wednesday that I have some progression on Faslodex so my onc is switching me to Letrazole and Ibrance, so I'm now here with you all and hoping for great things from Ibrance. Thank you so much for all the information already on this thread, very helpful
I don't have the Ibrance yet, but I've just started dealing with my Rx insurance about it. I signed up for the Pfizer co-pay card but had a question I was hoping maybe one of you might know the answer to. The card is good through the end of the year, does anyone know what happens after that? Do these things commonly go on for years and you just need to re apply in 2016? Or are we likely to be on our own with several thousand a month copays for this drug? The thought of that is pretty stressful!
Thanks!
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Rosestoeses, none of us can seem to get many answers about anything. Don't know about the payment schedule at all. Right now I am paying $10.00/month.
3 holly feel better soon. I am off to get more blood work! Myra.
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Thanks Myra, doctor said if it happens again to call and to switch off the Zantac, but it was probably just a bug since the headache and chills are gone. Good luck today.
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NUMBERS ARE UP, starting back up tonite. Finally some good news! Myra.
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Right on Myra!
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Hi Romansma - just noticed you were on everolimus - were you in a study? - I was in a study at Stanford with it combined with faslodex - so don't know it I was getting the drug for sure but I dropped out of the study as it was 10 hours of drive time each month/day (couldn't afford hotel rooms in Palo Alto) and I was very sick - could you tell me about your experience with Affinitor. Also, my experience with the Stanford study was they were VERY attentive while persuading me to do the study but when side effects set in they didn't seem to care much. My cholesterol shot up in 45 days from 160 with excellent ratio of good cholesterol to bad to 270 with a complete flip in good to bad ratio. I have heard that the docs that sign you up for a study are paid up to 100K by the drug company for doing so. Don't know if this is true, but if so, it is kind of unethical I think. Any way did you stop because of side effects, or because it failed?
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Myra, thanks for the response and hooray for your numbers!
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Great news, Myra, so glad for you!
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Thanks al
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Hi apackoftwo. I was on Afinitor for about 10 months. It seemed to stabilize me for about 7 months. I went off Afinitor after an extensive progression that included my tumor markers doubling and scans showing many new areas and most off he existing to be much more active. The SEs were tough in the beginning. Bad mouth sores, reflux, skin rashes, high blood pressure. That's what I remember. It's been a while and my memory is that of a 98 yr old woman these days, so sorry if I missed something. All in all, I would probably do It again
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Myra so glad for your good news. Keep it coming. Romansma praying for the same good news from you.
Lenn thank you for posting the list if medications to avoid. I don't recognize the names of any of the supplements I am taking . I'm feeling pretty good and good energy a week into my second cycle. The only annoying thing is constipation .
Apackoftwo I was on Afinitor for a year. In the beginning it was very difficult with lots of GI issues. But after about three months it got much better. I had no mouth sores and no issues with blood sugar or cholesterol . I think taking Glucophage helped.
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OK someone's gotta do it, LOL! 3 prunes every night makes morning sunny and bright....hope that helps.
Have a Happy Passover or Easter whichever you celebrate. May we be here for many, many more to come.
Myra.
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Borage Oil somehow interacts with CYP3A inducers ( like St. John's Wort) and that is why they told me to stop taking it. I think using the CYP3A inducers/inhibitors as interaction guidelines would be a good way to research suppliments . This information is readily available when you look up suppliments on Web MD or similar sites. Sloan Kettering also has a great section for natural medications.
WBC keeps going down. It didn't rebound this month but still recovering from that respitory issue I had all of last cycle. Not low enough to lower dosage yet. The trial nurse said to really try and stay away from sick people.
Glad your counts are back up Myra!!
Starting cycle 3 ! Here we go.
Happy Sping/Easter/Passover ......
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Interesting you mention the prunes Myra. Anyone else having an increase in constipatiin on this combo? I assume mine is the Oxy, but I was on Norco before that so it shouldn't have changed as drastically as it did. My MO just prescribed Linzess and I took my first dose today. Anyone else take this with any success?
Half way through cycle and the fatigue and weakness is pronounced. So much I want to accomplish each day and so much is not happening. I sleep a lot!
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OK counts are up...run don't walk to mani/pedi. Nothing better for happiness. Myra.
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That's funny, Myra. I did the same thing last week right before I started my second cycle. I knew they'd be the highest possible at that moment and I chose to spend it getting my fingers and toes done. Makes me feel less like an cancer patient. Had the eyebrows waxed too!
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that,s Monday and hair on Tuesday. Squeeze it all in while we can. Oh the simple pleasures we take for granted! Myra.
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Yes! Just had my hair color touched up too! Now, I just hope I have enough energy to get out and do something before the grey comes back and the nail polish wears off!
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Oh I'm jealous of you gals with nails and hair. :-) My hair has just barely started growing back from Taxotere, but my stupid finger nails are still in the process of falling off, they look awful.
I got some bad news yesterday...8 new brain mets. I'm sure I'll be booted out of the clinical trial (brain mets have to be under control in order to qualify for the trial). My insurance has approved palbo, so maybe I'll be able to keep taking it, though my liver is hurting more and more over the past few weeks, so I suspect I've got progression there as well. My onc will be running markers later this week and I expect they'll be higher.
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so sorry nancy, my prayers are with you. Myr
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Shoot, Nancy, I hate hearing that! Really hope you find something that pushes everything back without too many side effects.
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My white blood cells came up enough that I am now starting my second cycle of Ibrance?Femara. Oh how I want it to work as it brought the tumor markers down to 8 from 54. Yep we have got to figure out a way for it to be my ticket to health for the next 2-3 years. I feel well just am going to have to monitor the blood. thanks everyone for your input. Carolyn from Music City
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Praying for some relief for you, Nancy. Maybe the Palbo without a trial might be better and less stressful.
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Thank you all for the insight and inspiration. 2 days down with little SE. 19 more days to go. Praying for all of us.
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Happy it's going well, NTLani. The first couple of weeks seems to be very uneventful. Hoping it doesn't hit your counts too bad.
Need to get hopping this morning!
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Nancy,
Sorry about your progression. Hope your new treatment will reduce the new mets and relieve the pain you're in.
Terri
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Hi all. Everyone has been so quiet here. Hope everyone is feeling good and enjoying a pain free week. Myra.
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I am half way through my second cycle. I asked to have my blood done yesterday to see where we were with the counts since I am leaving for a cruise on Friday and don't want to be on the ship with low red and white counts.. The good news was that my WBC was good. I did do one shot of Neupogen last week. So if I can get through the entire cycle with one or two Neupogen I will be happy. No side effects at all. Am getting my blood drawn again tomorrow to see if I need another Nuepogen.
The bad news was my hemoglobin was 9.9. I had a long discussion with my onc and with the holistic pharmacist that he works with. I refused the Procrit that was recommended, but my onc and the pharmacist recommended Maitake drops, Squaline (shark cartilidge) and CoreOxygen to bring up red counts. My onc doesn't think that these supplements will affect the effectiveness of the Ibrance and neither did the pharmacist at CVS Caremark. Also taking a liquid iron supplement that is said to be very gentle on the GI and not cause constipation. It is mixed with various berries and pear, but no grapefruit. Hoping these do the trick since I absolutely refuse to do the Procrit. I will let you know.
Also my platelets which had been low are normal now, so it looks as if the Vitamin C, Astragalus and Ashwaghanda are working. Thank goodness.
Nancy, prayers for you. So sorry to hear your news. Hoping they let you stay on the trial.
Hoping that everyone is feeling well today and gets some positive news.
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Hi Pearlady, have a wonderful cruise. Where r u going? My DH and I cruise extensively.
I know you mentioned this before, but I can't seem to find it. What is the dosage for vit c and other supplements for platelets?
Thanks, Myra.
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Myra we are flying to San Juan and staying there 2 days. Then cruising to the southern Carribean, including my favorite, Grenada. Can't wait especially after the terrible winter we had.
For the Vitamin C, 1000 mg twice daily. I'll have to look when I get home, but I take a brand that was recommended as being easy on the GI. The vitamin c is taken with the Astragalus twice a day. The Ashwaghanda is twice a day before a meal.
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thx so much. I usually take ester-c since regular c upsets my stomach. Myra.
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Hi ladies of the Ibrance thread!
I have been a visitor since my stage IV (from the start) diagnosis last fall. I am going to be getting my Ibrance script in the mail this week and will definitely let you know my experience with it. I was wondering if anyone here is taking the drug in combination with Arimidex as that's what I had been started on in October and my Onc wants to add the Ibrance as opposed to switching to Femara since I have been getting good results with it. I was also wondering if anyone is on Celexa? I am currently taking it and there is a slight chance of drug interaction, so I may be switched. Are any of you taking an antidepressant with this med? If so, which ones? I'm really hoping to get the most out of this drug with minimal side effects, but aren't we all!
So glad I can read and share my experiences with a group that no one ever thought they'd be, nor ever wanted to be, a part of.
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Yes that is suppossed to be good. I take a brand named Carlson that was recommended and it is also very gentle.
Myra I see that you've taken Faslodex for a very short time. Did it not work or did you stop because you started Ibrance? Just wondering as I've not yet had Faslodex. I've spoken to my onc about it and he wants to save it for the future. I did, see, however, that they are doing clinical trials with Faslodex and Ibrance.
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Faslodex was a major fail.
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Yes, Faslodex failed for me too. However, I'd be open to seeing how it worked with Ibrance.
Have a great cruise, Pearlady! I just cruised to Mexico with girlfriends last month and my husband and son and I are going to Alaska in June. We are on Spring Break right now in Las Vegas. Going to see Shark tanks and then out to Hoover Dam today. As soon as I can drag myself out of bed! So fatigued! Heading to Zion tomorrow and Grand Canyon Thursday. Hoping my energy level cooperates!
Welcome to the thread, jjski. Hope this goes well for you
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Romansma have a great vacation. Hope you are doing some relaxing spa time in Las Vegas. Hope your energy level cooperates.
I took the Alaska cruise with friends several years ago and loved it. My favorite thing was a helicopter trip to the glaciers and actually getting out and walking. Bring something warm. I went in early August and had to buy a coat on the ship..
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Jjski my insurance company would not prescribe Ibrance without Femara. I was on Femara for five years with NED between 2003 and 2008, but my onc said that I should take Femara again and that maybe in combination with the Ibrance it would work again. Hoping that's the case. So far my markers have dropped, half way through my second cycle. Good luck to you also and hope you have great results.
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Romansma-- Zion is one of my favorite places. Enjoy!!! Pearl - have a great time on your cruise! It is still raw and cold here in Massachusetts and snow showers tomorrow!! These warm vacations sound SO SO nice!
My trial nurse called today to talk about my latest blood work. She said that I should expect my counts to hover around where they are after two cycles... Like you Pearl, I am going to try and raise my RBC and hemoglobin. Not much I can do for WBC which is now at 2.5 ( down from 11).
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Lenn, I would take 2.5 any day!
Hope: Love Zion and Bryce which I hope you are also getting too. That is the one place on earth that I actually got up to see the sunrise. Spectacular!
Pearlady: My DH did the Mendenhall Glacier in Alaska too...He loved it! Our cruise was in July and it was so warm that when we went thru the glaciers, they were serving margaritas instead of hot toddies, it was very comical. You never know with Alaska temps.
Myra
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I'm so inspired by all of you traveling women!
This afternoon I had my appointment with my oncologist to change treatments following progression from Faslodex. So sorry to say goodbye to that drug, as it kept me stable for nearly 4 years. I do feel lucky that Ibrance is out there now, however, and I'll be starting in a week or so, depending on when/if my insurance says yes, and when it gets here. In the meantime, I'll start the Femara while I wait. Last scan showed a couple small mets to the liver, and my CEA has been making a slow but steady climb for the last six months. I hope Ibrance can knock those number back down. You all have been the trailblazers, and you are making it much easier for people like me who come after to believe this is doable. Thank you for starting this thread, Romansma.
Crossing my fingers that I have no insurance snafus.
In talking about the side effects, my MO said that the low counts were the only ones they have seen (the have been involved in the trials), and just waiting a week for the counts to come back up has been working. So it doesn't sound like they have lost many patients because of the counts. He wants blood work from me monthly, a couple of days before I start each new cycle. I was glad that I only need to have bloodwork once a month.
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sandilee welcome to the group. I hope you have success. So far my only SEs have been low counts. My MO requires blood twice per month. I think he does too many TMs. Sometimes you need to give things time to work. He does tend to be quite conservative. Myra.
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Thanks, Myra! It's interesting how different docs do different things. I guess that's a good thing, actually, as it shows they're thinking and not just following a script.
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Has anyone on this site not been able to get approval for this drug, even after appeal? I am a little concerned about not being "first line" for me, which will give the company reason to deny.
It would be kind of silly, though, because the other choices, like Affinitor and chemo, are not much cheaper!
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Sandilee welcome. My only side effect has been the low red counts. I am using natural supplements to boost the red. Getting my blood checked on Thursday so we'll see if it works. My wbc has been good but I have been doing one to two Neupogin with each cycle, with this being my second cycle. A little constipation also which I'm sure taking iron is not helping . My energy is good.
Romansma enjoy Zion and the Grand Canyon. Went on a meditation trip to Sedona and Grand Canyon several years ago . The sunrise at the Grand Canyon was really spectacular .
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hope. _ enjoy your travel and families. Love your go get em attitude as a I read about your adventures from my couch - recliner. Have a blast. Mske these memories count.
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We have all gotten approval, and for most of us here it is second and third line approval. If you look back a few pages, I posted some articles regarding that topic.
Pearlady, I posted my remedy for the constipation problem afew posts back. Works like a charm and natural too!
Also, finally got an avatar up of myself and DH. thought it would be nice if you knew who you were writing to. Myra.
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Good morning all you brave ladies! Wow, am I tired! Got myself in tears of frustration yesterday with all the walking. It got to be too much. I recovered and it was a nice day after I got through my feeling sorry for the self that I am now. My son told me last night that he loves being on on vacation with me and dad. That's all I need to keep going!
Me and my husband and what is left of Lake Mead. Off to Zion today!
Stay strong, everyone. Life is too amazing to spend it in bed every day! (Sure hope this Ibrance is working!)
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AWESOME. Myra
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Thanks Patty. I spend many hours in front of my TV on the couch. Now I can spend hours relaxing on the beach after the terrible winter we had. Today its 42 and damp. Not really spring yet.
Hope everyone is feeling well today with good energy.
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Love your photo, Romansma. You guys are both adorable.
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Romansma love your picture . What a beautiful couple. Glad you are enjoying your well deserved vacation.
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outstanding photo, romansma! 📷
You were tired but YOU GOT OUT OF BED AND DID IT!!!
Makes me smile to see you two.
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What a beautiful photo Romansma. Certainly understand feelings of frustration and tiredness, but you are doing so much. I hope I can do half as much on vacation this year. And you look great!
Update on Ibrance - although initially approved by insurance being paired with Arimidex, Insurance is now questioning the pairing. So my Onc wants me to switch to Femara to make sure I don't get denied down the road. So I will start the Femara on Monday and get that in my system for a week and then get the Ibrance. I I am new to this world but itseems there are a lot of glitches to get smoothed out when a new drug comes on the market. My Onc says there is no difference between arimidex and femara as far as effacacy. Wonder if anyone has had experience here with switching drugs.
Take care ladies and I pray we all reap the benefits of this new treatment.
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I am 61 grandmother diagnosed with ilc with bone mets in jan 2015. I am on the 3rd round of Ibrance and femara now. 2nd round...Bone pain (especially ribs) so I started using a heating pad. It felt better. But then I had itching in the night. When I woke up to check it out It was a rash that spread quickly as the day went on. Also got a sore on my tongue that kept getting worse. My nose had sores that got so bad that started little nose bleeds. I felt the pain in all my bones where the cancer is. Also "pings" sharp pains everywhere at different parts of my body that lasted like a few seconds....once in a while. My toes go like out of joint once in a blue moon. I had a headache that lasted over a week every morning. Ibuprophen took care of it. Some hair loss. Fatigue is my worst complaint. My feet are so dry and cracking. Muscle twitches here and there. Very constipated. And now have Gerd. Prescibed med for gerd. 3rd round of Ibrance and femara...i used coconut oil for my nose. It is all better. My fingers felt funny so I put coconut oil and white cotton gloves at night. They are better. I used a zilactin on my tongue for a couple weeks...all better. Bone pain is gone. Aquaphor (eucerin) worked for my feet. Prunes and prune juice work for constipation. My blood counts were a little better last week. The powder that was prescibed helped the rash go away. It left my skin a darker color and like leather with dry scales but no more itching. So far...all se are manageable for me. I hope this helps others on Ibrance/femara. I pray for all of us everyday.
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Riverbelle I also have constipation especially now that I am also taking a mild liquid iron. I use Constipation Stop, an herbal remedy which my holistic pharmacist recommended . You can get in Amazon. It really helps and is very gentle. Glad to hear you're feeling better. I'mI'm almost finished my second cycle and my TMs are lower. Hope Hope this tretrend continues all of us.
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Hi Riverbelle. Have had none of those SEs except those little sores in my nose that led to small nosebleeds. Will try the coconut oil. Low blood counts. So far TMs down slightly after one partial cycle.
Have a back ache, more like a muscle cramp, today. Spent 2 hours yesterday slumped over a desk counting a huge mound of change. We save all our petty change and we have $180.00 to turn it and my back knows it! LOL
Pearlady isn't your cruise vaca coming up soon? Are you counts ok to go? I hope so, and have a wonderful time.
Hope, how was the rest of your vaca? You guys look awesome.
Jjski62, good luck starting. Your MO is smart not to screw around with the Big Pharma. We unfortunately are at their mercy.
Have a great day all! Myra.
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hope. - I love the pic. You got a handsome guy there and you are looking beautiful. Did I say awesome pic ! Thanks for sharing. I always think of you as your wedding renewal pic of you and your dh. Glad you are out there doing it ! Proud of you for keeping on keeping on. That's what we really have right? Either lay down and give up ( not there yet ) or medicate our pain , eat for energy and keep moving so we don't get stuck in that position. Staying stiff all day never helps me for sure. I hope you enjoy whatever time you have left in vacation. You have earned it.
Everybody else : have a great day. Glad to see so few side affects for this new drug snd love to see the excitement it holds in maybe just maybe being the new go to drug for bc mets. I think you all are just wonderful for being on the front line so to speak as research history is being changed so dramatically. Praying one day this will be a chronic disease and then an unremembered disease. A bco sis used to say something like " remember breast cancer?.... Yeah me neither!"
Jjski. - hoping femara treats you as well as if has me. Sorry you are having to change. But if dr thinks it's going to prevent you from having ibrance in the future it's probably a good idea. It's just a little sad that you will have to mark another a1 ( esp such a easy one ) off your list to try before iv chemo. Here's hoping you won't need to worry about that because this tx is doing it's job !!!!! Hooray.
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jjski62,
Good luck with the new drug, I will pray for good results for you and for all.
I will be starting a new round of Ibrance but need to get another blood test tomorrow to make sure the counts are OK. The nurse says that although the blood counts are low. my %POLY-A was 66.3% which means I still have ability to fight infections despite the low counts. After one round of the letrozole with ibrance, the tumor markers were as follows:
CA27-29 increased from 1138(H) to 1208(H)
CEA decreased from 20.4(H) to 17.6(H)
Romansma, great picture, thanks for sharing. You and your husband look terrific, and you are inspiring me to get outside now that we finally are getting a couple of nice days in MA - got out for a walk yesterday, went to my son's baseball game (finally the teams are playing outside) and I actually saw some crocuses and grape hyacinths emerging from the wet ground in my yard (the dirty snow piles are finally nearly gone except for the mountains that were dumped near the beach). So things are looking up!
Thanks everyone for all the great information!
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Riverbelle, pearlady, Myra, thanks for the tips and info on side-effects. And Romansma, love the photo, looks so sunshiny and happy! I hope everyone out vacationing is having a great time!
I'm still waiting for the specialty pharmacy to get everything together and send me my pills. I'm not supposed to start taking the Ibrance until I get home from my own vacation at the end of the month (onc dosen't want me out of range when starting new meds and thinks the letrozole for now is ok and add the Ibrance then), but I'm starting to get anxious about having them here by the time I get back. Why can't anything with bc ever be simple?
PattyPeppermint, I hope you're right about bc someday being a non-issue. I hope Ibrance does a lot to make that happen, or at least as the start of a new kind of drug I hope this is the beginning of something great.
And 3Holly, I hear you about the weather here. The sunshine today feels so nice especially in comparison to that never-ending winter!
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Myra we are on the cruise now. In St. Croix today. Beautiful beach day. Feels so good after the terrible winter we had. My counts were a bit low but not terrible . My hemoglobin actually went up after taking the liquid iron for three days. Only four days left in this cycle.
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Thanks everyone for sharing about the nose sores. I have had he same thing since the first cycle and thought it might be related to the Palbociclib, now I would say "yes", since many of you have had the same thing.. I have been using a saline nasal spray to keep any infection from my nasal passages and will try the coconut oil.
I drink a couple of organic Kevita probiotic drinks everyday and that helps with any of the gastro issues. I have been very conscious of diet on this third cycle, getting enough protein and iron, drinking enough fluids and I have found the fatique to be better. It could be I am just getting used to the drug.
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I made it back! Exhausted, but really happy to have the memories! Finishing my 2nd cycle of Inrance tomorrow night. Having my blood drawn tomorrow. Checking tumor markers too. Really hoping they are down. I feel a little better than last cycle at this time. I'm tired, but not so bad that I can't do a few things. Also, something interesting happening over the last couple days. I've been able to cut back a little on pain meds. I don't want to get too excited, because the day before this started, I had a total melt down from needing pain meds. Still, I'm a little optimistic that something might be heading in the right direction!
How is everyone?
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So glad you had a great trip! Great memories for you and your family.
I see that you have your blood work done the day after you finish your cycle. By "cycle" do you include the week off as well, or just the three weeks you're on the drug? I guess my question is, do you take your blood work after your blood has had a chance to bounce back on the week off?
Also, do you have the pills for the next cycle in hand when you go for your blood work? I'm just a little confused as to how this works with the monthly draws and keeping up with they cycle schedule.
I'm still waiting to hear if my insurance has approved Ibrance. I've started the letrozole.
Myra- I have looked back and I don't see anything confirming that people with Anthem Blue Cross have been approved for second or third line therapy. Obviously, there are women here getting it, but I don't know their insurance situations and if they are similar to mine. My onc said that Blue Cross has denied some patients but some were appealing. If you have had an easy time getting it, consider yourself lucky.
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Sandilee I have united healthcare. They wanted $9000.00:mo. Hahshs. Applied to Pfizer and got the pills for $5/mo. Have u tried this route? We have gotten it as second and third line for most of us. I have my blood work halfway and then before starting the next cycle. Tomorrow is halfway.
Hope so glad u had a nice vaca. Good luck tomorrow with your blood work. Myra
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Just letting you know I take Celexa 40 every day and there has been no interaction with arimidex or I am now on Femara and Ibrance....I know of no reason to stop Celexa ever...IT has been wonderful for me for over 15 years now. Carolyn from Music City.
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Thanks, Myra. I haven't tried the Pfizer route yet because I haven't heard whether the insurance has given approval yet. I wonder if it's possible to go through the Pfizer program before getting insurance approval, or do you wait until they give you their answer/copay, and then approach the Pfizer? It sounds like they work together somehow. I'll give it a few more days and if I don't hear anything, call the doc to see what's up and let them know about the Pfizer program, if they don't already. Thanks for your reply.
And 9K a month! Isn't the drug cost 10K a month total cost?It sounds like they're paying the copay, and they want you to do the rest,lol. Glad you got the card from Pfizer!
My onc said my copay might be $500 a month. If that's the case, I'll apply for the copay card program, and hope I can get it for $10 until the end of the year.
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I think you need insurance denial to go the Pfizer route. Your Onc should have all the info and work with insurance and Pfizer to get it to you as fast as possible.
On blood work, it can be different from Onc to Onc. I was doing my both at the end of the 21 day cycle and again the following week before starting again. I think that was because my counts got so low. As we get comfortable with how Ibrance is affecting the counts, we won't need as many blood draws. I'm due for my Xgeva too and always get a CBC for that.
My specialty pharmacy called today to refill my Ibrance and Femara. I will get it in the mail by the end of the week and be ready to start again next week.
Hope all this helps, and really hope you get approval soon
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Romansma - what specialty pharmacy do you use? I have been using Diplomat and they seem to mess up every month on my Xeloda - this month they failed to get me my meds on time - my onc is changing me but I don't remember to who. My local Safeway has a specialty arm which would be much easier but Medicare won't pay for a retail pharmacy.
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my specialty pharmacy is Optimum RX. so far they have been on top of things. Myra.
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I believe I'm using Caremark in Beverly Hills. They usually call me right on time each month to renew everything. I used them for Afinitor and even the Xeloda in th past.
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Hey gals, even though I'm no longer taking Ibrance, I wanted to chime in on the copay and Pfizer's assistance. In my case, insurance approved, but my copay was going to be $250/mo. The pharmacist enrolled me in the copay assistance program and I only had to pay $10. It is worth asking about if you have a high copay.
Good luck to you all!! I'll miss not being on the thread, I'm going back on taxotere next week.
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nancyh,
I was wondering how you were doing, sorry you will have to switch drugs again. You have been amazing to keep up your running and thank you for all your great advice, you are an inspiration. Good luck, and I will keep you in my prayers.
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Good luck on the Taxotere, Nancy. Hope it goes easy on you. I think I missed why you needed to change. Did you progress, or was it SEs? How long were you on Ibrance
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Carolyn, thank you for the info on Celexa. I have been taking it since my diagnosis and will continue it with the Ibrance/Femara. I was also taking Lyrica but weaned off of it as I don't feel it was really doing anything for me and we could not find info as to what interaction, if any, it may have had with Ibrance, as no one in the study was on it, at least that's what I've been told. One less pill for the pill box is always a good thing.
My insurance is Independence Blue Cross, Personal Choice. I will also be getting the discounted copay of $10 month. My specialty pharmacy is Onco360.
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After a week and a half of who knows what, I got the news today that my Ibrance is all set and will be on the way, such a relief! The final hold-up was that it had been flagged for "high copay," but since I'd already called my insurance, I knew the copay was around $2400 (I have great medical insurance, but not so pharmacy insurance). And I already had my Pfizer copay card printed out, so that was taken care of and under control. Thank you, everyone, for all the tips and input about the cost and the card option.
One thing my onc mentioned that I though was interesting was that even though I had tamoxifen after my other stage III treatments, the "first line" or "second line" starts again with the stage IV dx, so for me this is considered "second line" after the faslodex which I had first with the stage IV dx.
But, either way, it's been approved, thank goodness!
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Great news, RosesToeses! Who is your insurance company? Thank goodness for the copay card!
I'm still waiting to hear, but every new "second liner" who gets approved is good for the rest of us!
When I am approved and I get the co pay information (I assume it will be very high), I'll ask the pharmacy about the Pfizer card. Or should I just go online and try to get it on my own?
For those of you using the Co-Pay card, did you get it through your pharmacy, your doctor's office, or on your own by going online?
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Sandilee, I was going to add my insurance co in the post but I can't remember who it is! Rx Solutions, or something like that--it's on file at the pharmacy we use and dh has the card right now. All the drugs given in the hospital (chemo, faslodex, Xgeva) go through our BCBS medical insurance, but this is a prescription so it's under the drug insurance which is a different carrier for us.
For me, I applied for the card online before the pharmacy talked to me and that made it easy when I called and they discussed the "high copay" flag to read off my number on the card and move on--it eliminated a few steps that way. The "card" is simple to do online and you print it off instantly, so I don't think there's much downside to having it set beforehand.
Also, I phoned my drug insurance company when I first got the prescription from my onc and they told me my coverage and price/copay for the drug--might be something to try so at least you have some idea what's likely to happen.
Good luck with it!
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Congratulations Rosestoeses. Your MO is correct you are second line tx. Good luck with the Ibrance. Hopefully sandilee yours will be in very soon!
Pearlady, the vit c and ashwanga worked tremendously on my platelets so far! My platelets actually went up over 250 this week. Now we need to work on the ANC which is 1.2 right now and my MO is threatening to stop it if the counts are under 1.0 on Monday's counts until they come back up. Any magic bullets for them? I asked about neupogen and he said not with thismed. there is so much different info going around. Well, if I get to day 18 that's almost there.
Good evening to all....Myra.
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My MO said no to Neupegen with the Ibrance too. Wonder why? I will,get blood counts tomorrow. I feel a little better this cycle, but who knows! I've been at 1.2 ANC pretty much the whole time. Hope it didn't go much lower, but so far, no infections, viruses, etc.
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Interesting about Neupogen since my onc originally said he would consider something like Neulasta if my counts go too low, but so far the nurse wasn't concerned because the %POLY A was 66.3 so she said I could still fight infections despite the low blood counts. Maybe they are just learning something about Neupogen (and maybe Neutlasta?) with Ibrance, too bad if it is incompatible, but I will ask him at my next visit. I am thankful for this site - first 2 weeks I took Prilosec with the Ibrance and would not have known about it being incompatible had I not checked this site, so thank you, Romansma for starting this thread - it is so helpful! Glad to hear Pearlady's advice helped Myra with the Platelets, that is a big improvement! RosesToses, glad to hear you got approved, and good luck with Ibrance!
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3Holly, I have never heard of the %POLYA blood test. Do you know what it is. Tried looking it up on Dr Google to no avail. Thx Myra.
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Yes, Holly, interested in that too. Maybe that's how infection hasn't been as much of a problem with Ibrance, even though the counts get so low.
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OK! The nurse just called to say I was finally approved for Ibrance! Now waiting for the pharmacy to call me and let me know the co-pay and let them know where to mail the meds. I have my Pfizer $10 Co-Pay card online and and hopefully I'll be able to use it until the end of the year. It looks like I'll get to join this little party, at least for the next three months until we see if it's working. :-)
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hooray Sandilee!
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Myra, The % Poly-A is just one of the lab results they ran when they took my blood at my last visit, not sure if they always do it since I don't see the %POLY in the prior blood test I took at another hospital closer to home a week earlier. My %POLY-A was 66.3%, and the nurse said you take the 66% (or your % Poly-A number) times the WBC count (mine was 1.65), and you're OK if the result is greater than 1.
So mine was .663 times 1.65 = 1.09 which she said means I can still fight infection since 1.09 is greater than 1.
Good luck, Sandilee, hope it works great for you!
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Hello, I have been doing a lot of stocking on this subject, I am about a week away from finishing my first round of ibrance and femara, I have had no side effects to speak of except for maybe a little sore throat , which I am not sure if that is from the meds or just a sore throat. Anyways I just wanted to say Hello to every one, and that I love hearing all of the good things from all of you. I am so hoping this is the drug we all have been waiting for.
I also asked the pharmacist from cvs Pharm. about the prilosec. She was unable to find anything about it and the ibrance, also she called Pfizer and they did not see a problem with it either. I did cut down , and am only taking it once a day and about 12 hours from the ibrance but They both didn't feel it was necessary.
I wish you all good luck and hope the best for all of us. I hope to keep hearing of all of your triumps!
Redroan
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Hi Redroan,
Glad to hear things are going well for you on the Ibrance. I really wasn't sure whether to go off Prilosec since it worked well, but I decided to try Zantac since another Dana Farber patient said protein pump inhibitors were prohibited in the Dana Farber trial she was on with Ibrance, and Prilosec does release for 24 hours (although not nearly as much after 12 hours, so my doc had the same advice you got, just keeping a 12 hour gap). If the Zantac doesn't work out, I may do the same with the Prilosec, but so far Zantac has been Ok.
I have not had a sore throat (I hope that yours will disappear soon and is not a side effect), but I have noticed I am extremely thirsty all night and need to keep a big thing of selzer beside me to keep from feeling dehydrated - maybe hydrating more might help your throat, you could give it a try. Good Luck!
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All,
A little info that I was able to find.......When the absolute neutrophil count (ANC) is less than1.0 or less than 1000, risk of infection is increased. Hope this helpful, although a little confusing because of the varying terminology for the same thing......Praying for all of us to be in the normal range.....
POLY, POLYS, and PMN stand for polymorphonucleocytes or polymorphonuclear neutrophils. On some lab reports, they refer to your segmented neutrophils and other times to your total neutrophils (both segmented neutrophils and bands).
Absolute neutrophil count (ANC): Neutrophils are the main white blood cell for fighting or preventing bacterial or fungal infections. In the CBC report, neutrophils may be referred to as polymorphonuclear cells (polys or PMNs) or neutrophils. The absolute neutrophil count (ANC) is a measure of the total number of neutrophils present in the blood.
A normal range for ANC is 1.5 to 8.0, which translates to 1500 to 8000/mm3.Sample Calculation
WBC count: 6,000 cells/mm3 of blood
Segs: 30% of the WBCs
Bands: 3% of the WBCs
Neutrophils (segs + bands): 33% of the WBCs
ANC: 33% X 6,000 = 2,000/mm3
ANC of 2,000/mm3, by convention = 2.0
Normal range: 1.5 to 8.0 (1,500 to 8,000/mm3)
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Thanks GDG, I was told the same about the ANC and 1.0. Last month mine was at .6 and my MO took me off. Some here have gotten low and kept on. Wish they all used the same terminology. Myra.
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sandilee. yea. Hoping lbrance does a great job.
Keep strong you pioneer women. So excited where this drug is taking mets
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Thanks for your cheers Patty. Maybe this could work for you at some point! Congrats Sandilee and Roses. I look forward to hearing how you do. Really hoping to hear some success stories here.
I had an appointment yesterday. Nothin new. WBC at 1.2, ANC at .6, and platelets 10.1. Low, but doable. My tumor markers went down slightly. They are down 8 points over the last 2 months. That's not much, but considering they had doubled in the previous 6 months, I'll take this downward trend as good news. Hoping to keep seeing it go down over the next few months. Even more, hoping Ibrance is a long term habit!
I had been feeling not too bad this past week, all things considered. However, I over did it yesterday. I had bought my husband Steely Dan tickets at the Santa Barbara Bowl for his birthday. We got there a little late because he had a 5k Corporte Games race after work last night. Anyway, I walked a couple of blocks to see him run his race, then a couple blocks back. When we got to the Bowl, the lots were full. We ended up parking about a mile and a half from the bowl. Then, we had to hike way up to the top because we had the cheap tickets. Then......all they way back afterwards at 10pm. Wow, I'm hurting today! I'm still in bed. Wonderful band. Incredible talent. Love the Jazz. Not sure I will buy tickets to the Santa Barbara Bowl anytime soon unless I take Uber or a taxi....better yet, a limo
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Hello ladies,
I'd like to join in the Ibrance discussion as I was recently approved and my pills arrived yesterday! I haven't posted in years, but have always been grateful the boards have been here to find great information, support and inspiration! I am 42 with 3 beautiful children 13,12,&9, they were only 5,4,&1 when my battle began 8 years ago I have been metastatic for 3 years and after taxol for the 2nd time, I tried aromasin, faslodex, arimidex and afinitor. I finally found great success on weekly Carboplatin infusions for the past year. I'm always anxious to begin any new treatment so if you could share your experience with side effects I would appreciate it! I read through many pages and found the majority have low counts. Seems silly after all we've been through- but gosh -really hoping there is no hair loss on this as I haven't had any on Carbo so I wouldn't want to give up that treatment for worse side effects. My kids always worry more when I have that visible sign of treatment
Thank you! May this be a successfultherapy for everyone! Margie
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welcome Margie, I hope the journey into Ibranceland is a good one for you. The MOs here are all trying their best to become comfortable with this new drug. We are all trying our best to get used to the blood counts. Good luck. Myra.
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Myra: Ibranceland!! :-)
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Hi Margie! I totally understand the hair thing. I have kids too and they are very sensitive to me losing my hair so I've been trying to stay away from anything that has that side effect. I don't think anyone here has reported that. The main side effect seems to be fatigue from the low counts. My second cycle was a little better than the first. I guess your body starts adjusting the energy expenditures with the perpetual low counts.
Night all you Ibranceland dwellers!
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Hello everyone, may I join?
I just want thank you all for your insight and to share my experiences on Ibrance as well.
I'm about to wrap up my first round and that giant slamming sound you hear is my counts hitting the floor. Red and white.... hemoglobin below 10 and white count at a dismal 1.6.
Onc says I should rebound next week when I'm off. Thank you pearlady for the info on the ashwaghanda. I will certainly be looking into it. I will also be asking my herbalist and onc if pau d'arco tea is ok. I just brought some back from Costa Rica and it is supposed to really boost the immune system. At the same time I don't want to take anything that would interfere.
Weeks one and two were pretty much side effect free, but I did notice some more intense hot flashes and some slight stomach upset. The fatigue seemed to catch up with me this week but I've tried to push through it with long walks. The upside is that some very sharp pains in my outer thighs have faded. Some general lower back pain remains but it is tolerable. I have some spine mets and onc suspected inflammation there was pressing down on a nerve. Good news is if the sharp pain is easing it's possible those cancer cells are shrinking *fingers crossed*
I am finding a few more hairs coming out than normal during hair washes but again nothing major. Here's wishing us all the best on this new med.
Romansma thank you so much for starting this awesome thread,
Kay
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Welcome Kaydee! Looking forward to your contributions!
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Hi Kay, welcome. Myra.
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Welcome, Kaydee. It's great to hear from another person who seems to be handling the SEs well.
My pills came in the mail today, and I will start them on Monday. I want to time the end of the cycle to my doctor's appointment next month to do the blood work, so I need to wait a couple of days.
I was wondering- are you all starting with 125mg? Has anyone moved down from there to 100mg, and did it help?
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Ibranceland here I come!!
I've been reading and absorbing since day one of this board. I was just diagnosed in January and started Ibrance in February. I was able to get in on the tail end of the clinical trial at the Hillman Cancer Center. Halfway through my third cycle. I've been reluctant to post because I'm still trying to figure out all of the lingo and counts. I am taking the 125 dosage; have also experienced more hair washing out; and energy comes and goes.
As a newly diagnosed Stage IV my biggest question is...are people able to continue working? I just requested a leave from work (usually work 45+ a week). I feel my body needs time to rest and adjust to the medication. Plus I think I mentally need time off to process everything. From what I have been told Ibrance has high hopes. So I'm hoping that after a brief rest I'll feel like going back to work. But if not, does any know if a Stage IV diagnosis enables you to disability? Not giving up just want to be prepared.
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Hi Sandilee, I started on 125 and got switched to 100 after my ANC went to .6 after 17 days. Now on day 15 and my ANC is low again and MO is threatening to stop it again. New blood work on Monday. He said this happens sometimes til your body gets used to it. Meanwhile TMs down slightly, but right side hurts. Was counting change last week for 2 hours and attributing to that. Need to put heat on it and see if it works.
Welcome PPAP. I have not experienced any hair problems nor have I been too tired. I think the hair thing is attributed to the femara. I also get flushed more than flashing. Hot during the night too.
Well, enjoy the crazy up and down, turns and twists of this bc stage VI dx ride in Ibranceland.
Have a great day all!! Myra.
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I know all the MOs trying to figure this out, Myra, but I've been at .6 with my ANC pretty much the whole time. No threat of dosage reduction and definitely no breaks. I don't know why there would be such a difference. I thought maybe it was your platelets last time. Anyway, just hoping you get to staywith us in Ibranceland!
Ppap, welcome, and thanks for posting. Sounds like you are a little ahead of us if you've completed 3 cycles. Good to hear from you! As far as working and disability, I find it too hard to work. Pain, fatigue, and even the cognitive side effects from the AIs make it too hard! If you decide to stop working, you shouldn't have any problem with SSDI. You can apply online. There are some things for your MO to sign. There is a 5 month waiting period that you cannot be working before the payments start. If you have short term disability insurance, that should fill the gap. Also, Medicaid doesn't kick in till after 2 years so you'll want to have your own coverage during that time. Anyway, glad you are taking a break. Too much to process while working so much.
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Hope, I have worried that my MO might be too conservative and careful. Seems like I have not had any tx work for more than two months. Last PET scan I felt was basically stable, but he thought there was slight progression. I read these reports for a living, I am a Tumor Registrar. I got switched again. He seems to be very wary with this drug. Am definetly considering a second opinion at Dana Farber, my brother lives in Boston and I would stay with him. As I have said before, making decisions is difficult lately. Never had this problem before. I have owned and run my own business for 30 years! Myra.
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Romana thank you for the information. My tumor is in my liver and causes me pain. I've also been having some cognitive issues but to continue working I have not been taking any pain meds. I think deciding to finally take my 70+ vacation days is the right thing for me to do at this point. I do have a short term disability policy if I need to use. It's the long term medical coverage that worries me. Since I am 49, single, with no children. My work and extended family have been my life for the last 28 years. I guess now I have to learn to make myself my #1 priority.
On day ten of third cycle. My end of three cycle scans are scheduled for the 30th. I amanxious to see the results of the Ibrance. I'll keep everyone posted.
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Thanks for the warm welcome ladies!
Sandilee, I'm just wrapping up my first 21 days on Ibrance and I am at the 125 mg dosage. Saw onc yesterday and my counts are low (hemoglobin, platelets and white cells) but he says he expects them to come up during the week off and did not mention lowering the dosage.
PAPP, take those days! And come on out of there if you can and you feel work is just too much. Be really good to yourself right now, kind to your body and your mind. If this Ibrance does the job for us, even if we come out on disability, we can always go back to work. As a recovering workaholic I know what a mental shift it is to make yourself your main focus - but YOU are the priority right now. Hoping you have GREAT scans.
Kay
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I think a second opinion is a great idea, Myra. Your MO may be right on and a second opinion will confirm that. Otherwise, you may gain some insight that will help you change course. My MO reminds me that hormone positive treatments are a bit slower to show results. For me, stabilizing my tumor markers is a win, for now. I'd like to see them go down, but I don't expect that to happen in 2 cycles.
Ppap, happy you are taking some time off. After some rest and relaxing you will be able to decide better if its time to stop working. I'm sure there are options for keeping your insurance. Something to look in to.
Enjoy the weekend everyone. I was looking forward to a little gardening today. Not sure I will be able to. Back and hip pain isn't relenting with the Oxy, so far.
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My ANC has been around 1.2 / 1.1 for the last 2 cycles. The trial nurse thinks it will just hover around there for now. My dose is 125 mg and I doubt it will be lowered. I am coming to the end of cycle 3. The fatique has definitely lessened.I have a very physical seasonal job that I am back doing. the days are going well... Just nothing left at the end of the day. I was really worried I wouldn't have the stamina but so far so good.
My blood counts are not really changing on the off week. I did manage to get my red count up and I think I did it with diet. It is actually pretty normal.
I was trying to post a link about the Paloma 3 trial- which was ended this week because the results were so good. I will see if I can get ithe link up sometime today.
Welcome and good luck to everyone just starting the drug. After this cycle, I will go to having blood work every month instead of every 15 days. I have been getting an EKG every month but that will be going to every other month. I will also see my MO every other month instead of the every month I have been doing during the first four cycles.
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Romansma, I sent you a PM
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I read that too. Good results from the Paloma III trial. I will look for where I read it and post.
Edit. Found it!
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My MO told us this is for people who have not had previous AI. I've been on Tamoxifin and Arimidex. Is anyone on this who has had other AI treatment?
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I was on tamoxifen 10 years ago and femara. Myra.
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NorthTexas-Aromasin and Faslodex. While the drug was approved for first line, it is being prescribed for second and third line for many of us. It seems that insurance is covering it, too.
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Hi Ladies,
Thank you for sharing all the useful information in this thread. After my mets dx. I've had:
gemzar/carbo
femara/letrozole
abraxane
faslodex
abraxane
Is there a chance I will get to try Palbo? Sorry, I really did try to read through the whole thread and I don't think this one was addressed. It's just that I have heard so many good things about Palbo. A friend of mine who has been through many treatments said she had to buy 300 shares of Ibrance to get samples in the mail?!
Has anyone here been through as many treatments as I have yet got the opportunity to try Palbo without huge out of pocket expenses (which I can't afford)? Are most of you (or all of you) on the phase 3 clinical trial? I'm thinking no because some of you have written that this is not your first line of treatment.
Thanks for your time and take care!
Brenda
P.S. Arimidex, Femara/letrozole, and Faslodex did not work as single agents.
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Ladies, I am three pills away from finishing the second month of Ibrance/Femara. Blood counts are low but I feel fine...I cannot figure this out. I am due to go to a large family gathering in Norway in 4 weeks. Read: I am worried about international travel and long flights with lowered immunity..Does anyone have any ideas regarding being cooped up in these planes for a long international flight with lowered immunity...Otherwise I am pleased. Do not go to Oncologist until May 6. hope all of us have found our wonder medicine for the next few years. Carolyn from Music City
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Adnerb, I have had more then you as far as treatments go and my insurance ok'd the ibrance. I still had to get the copay card to be able to afford it, Just praying this is the answer for us all.
Redroan
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Hi Northtexas
Since my recurrence three years ago, I have been on a couple AIs; aromasin+affinitor and arimidex, as well as faslodex and chemo.I was just prescribed Ibrance and my insurance is covering it. Hope the same for you!
Margie
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Thanks for posting that link Romansma. I was trying to do it from an iPad and couldn't figure it out. All good news.
Carolyn, your trip sounds great. I really want to visit Norway! The Nurse at DF advised just washing your hands as much as possible and keeping your hands away from your mouth and nose. I am using saline nosespray as well. I always bring a small package of Lysol wipes on planes and wipe what I can. Don't touch anything if you can help it.
The feeling I get from the nurses/Dr.s on the trial is that they are not getting too hung up on the low counts and doing anything special about "germs". Pretty much old school common sense.
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Carolyn, I know how you feel about planes. There are a lot of coughs going around in MA right now, not sure if it's the weather changes or start of the allergy season. Some people say that Airborne helps (at least with colds) if you take it before going on the plane, might be worth a try if it agrees with your meds. Have fun in Norway, I hear it's beautiful !
Thanks Lenn13k and Romansma for the Paloma III info, good to hear that news.
Adnerb, it sounds like Ibrance might be an option for many - they are still figuring it out, and the insurance, but it's promising along with some other similar drugs (including a drug by Eli Lilly - not sure if I spelled it right) that could be approved soon.
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Good afternoon, everyone. I'll be taking my first Palbo pill this evening with dinner. This is second-line treatment for me, but my insurance approved it, for those of you who are wondering about getting it after other AIs and hormonal treatments.
Carolyn and others getting on planes: I have a friend who is a consultant to the healthcare industries and she talks to a lot of specialists in the field. The word from her is that the germs on the plane are transmitted primarily through surfaces, not so much the air. The planes are not sanitized after people get off- seats and armrests, and drop-down trays are all really contaminated, especially if the plane has had a quick turn-around time. What was suggested to her is to wear cotton gloves. I asked why cotton and she didn't know but said that cotton was specified as somehow being better protection.
I'll be flying to Chicago in two weeks- just about the time I expect my counts to drop- so I found a source of cotton gloves online and ordered some. They were cheap- $17 for 12 pairs, and half of that was shipping- so what's to lose. I may look a little strange on the plane, but it's better than wearing a mask. ;-) I haven't received them yet, but I don't really care about the quality. As long as they get me through the trip it will be worth it.
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Do you all take your Letrozole at the same time that you take the Ibrance? I took my Ibrance with my dinner, but prefer waiting until bedtime to take the Letrozole. Does anyone know of a problem with this? I won't see my onc for awhile and I was just wondering. I'm assuming it's ok, as the drug stays with us.
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Sandilee, I'd like some feedback on the timing too. I've been taking both pills together - but I wonder if they're more effective if you take them at separate times.
And thanks for the cotton gloves tip. I'll be on a cross country trip next month and am concerned about my really low white cell count. I also plan on increasing the amount of protein I eat. It's been hard to meet my daily intake goals since I cut out a lot of meat.
Lenn13ka - may I ask what diet changes you made that you think helped boost your counts?
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kaydeesmile and sandilee, I take them both at the same time after dinner. I was never told anything about it just make sureyou take with food. I take vit c, ashwanga(?), 1200 mg calcium with D, astralagusand pain meds. I don't think I have any more time in a day for more pills!! LOL. Pearlady gave me the vit. Supplement suggestions and they worked like a charm for the platelets. WBC did somewhat better this round too. Platelets never got low.
Finally have an appt with an Interventionalist MD on the 30th. Will let you all know what he says.
Enjoy your day all. Exceptionally warm here this week in Florida. Did someone say Global Warming? Myra.
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Kaydeesmiles, I take both pills at lunchtime since I have needed an antacid at night ever since my first radiation 6 or 7 years ago, and you are not supposed to take the antacid near the Ibrance/letrozole to make sure it's absorbed (found this out after 2 weeks of taking it wrong).
Myra, glad to hear it is warm down there in Florida, for those folks on april vacation - kind of chilly here in MA still - a lot of colds going around. My son came home from his CapeCod baseball game sick - might be strep, I think I will take the advice on the gloves when visiting the pediatrician!
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This is a 4th line of treatment for me. No problem with insurance approval.
I'm on my week off between 2nd and 3rd cycle. I was doing ok until Saturday. Lots of bone pain, especially in my lower back, pelvic area, and hips. Very fatigued. Headache. This will be day4 of feeling this way. Not sure why. Wondering if it has anything to do with my body trying to recover blood counts. Kinda stabbing in the wind here. Not feeling well at all. A little worried about starting a new cycle tomorrow night.
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Hope same for me in same areas iof pain. Spoke to RN. think it's femara SEs. Feel better. Still lucky no fatigue. Myra.
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Romansma, I'm really sorry to hear about your latest bone pain. Did you take anything for it? Sometimes my bone mets act up- never know why- and a couple of Advil help. You may already be on other pain meds, though. I really hope it clears up soon. Will you be going in for blood draws before your next cycle?
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Romansma, I'm sorry you're having trouble. Are the SE getting worse each week? I thought the week off was supposed to bounce you back? Praying for you!
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Romansma,
Sorry to hear about your bone pain. I had a couple of weeks radiation to the pelvic/hip area a year ago, and it did wonders - got rid of the pain - did you already have radiation to that area (I guess you can only have it to the same area once)? Hope you get some relief soon.
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Thanks everyone. I had radiation to my hip and cervical spine last year, but not my lumbar spine. I've had quite a bit of progression since then, but when I saw rad oncologist, they decided it was too much to treat with rads and I should go systemic instead. That's when I went on Xeloda and hated it. I took 3 cycles and quit. I take Oxy around the clock for pain and Celebrex for inflammation. I needed break through dilaudid this weekend. Weird after the previous week of having a few days of needing less pain meds.
I was supposed to redo my labs last week but I've been dragging my feet. Too tired, don't want to go. I am going here in a few and we will see how my counts recovered with a week off. I feel like they must still be low because I'm so darn tired!
I do get frustrated by the fatigue. I've been shuffling instead of walking the last few days. I finally got to the grocery store this morning after my youngest asking me to for the last few days. He's 11. I got home and threw the refrigerator things in and left the rest on the counters. Too tired to put it away! I wish there was an answer to the fatigue. My brain wants to do all these things and my body can't keep up! I still haven't unpacked from vacation and it's been over a week!
All in all, I want my cake and to eat it too! I want a medicine that kicks cancers butt but allows me to lead the active life I want to with no side effects. What's so hard about that? All in all, though, I'm happy with the Ibrance so far. Most of us know the side effects could be tons worse!
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Hope, so sorry to hear this. I know how difficult this is for you especially having small children still around. Kids are so sensitive to us and we try so hard to act as normal as possible. At least you are going to the supermarket alone. I make my DH go with me on weekends. I would be thrilled to be normal again too.
Have you spoken to your MO about this horrible fatigue? Perhaps one type of pain killer would stop the fatigue. I have heard fentnyl patches deliver relief through your skin continuously.
Good luck with your counts today. Just remember we can only do what we can. As women, it is so difficult to put ourselves first and as moms we just want our kids to live as normal a life as their friends.
Please accept my hugs! Myra.
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I'm glad to hear it is not just for first line treatment anymore!
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Romansma,
I hope you can get the pain under control. I had lower back pain that made it difficult to walk a year ago (I was thinking I had a bad back, but discovered the cancer had spread to the bone) - they radiated the pelvic area, and spine (not sure if it was the lumbar or cervical spine, might have been lumbar) and I have been able to go without pain meds for - so far - a year (don't want to jinx myself, keeping my fingers crossed). So the radiation was very effective, and I can now go walking without pain. I wonder if you should get another opinion - maybe there is a way to control the pain without being wiped out, since the low blood counts are exhausting enough (I know how you feel, I was "done in" yesterday after food shopping)!
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I know you guys all know how it feels, so I dump my frustrations here instead of on my family. I do think pain control is still an issue for me. I think radiation will be an option again once the progression is stabilized. I haven't had anymore scans since end of last year, so I should be due for one soon. If things look like they are evening out, I think I'll ask for another consult with RO. I didn't have a great experience with the last rounds of radiation on my spine. It caused horrible pain in my arms, probably from a nerve being affected. I also got the most horrible sore throat and couldn't eat for a couple of weeks. I was told that wasn't the norm to get the awful nerve pain, but still! Anyway, thanks for the suggestions. It would be good to get some rads and be able to cut back on the pain meds at some point. Or, maybe Ibrance could do its magic and wipe out all those nasty vertebrae tumors! I found myself worrying about my future mobility this past weekend. Scary.
I am going to email my MO now to get lab results before I start on 3rd cycle tonight. Hang in there everyone. So glad we have BCO to come to for info and support!
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Romansma,
Sorry that you had a bad experience with the radiation. You may have just had back luck with it, but I also think it makes a big difference who you go to for the radiation - If you get radiation again, make sure you get the best doctor, and maybe a couple of opinions on what should be radiated, and possible side effects given that yours were such tough side effects the last time. When I was first diagnosed, I wanted to go nearby for convenience, but I was glad my sister convinced me to go to Dana Farber for my first radiation treatments since they were great even though it was tough driving in there. I was unable to get Dana Farber for the radiation treatments I had again a year ago, but I must have been lucky again since the radiation I got locally actually cured the pinched nerve in my back and enabled me to walk without pain again. Even though the cancer has progressed over the last year, the pinched nerve hasn't returned so far, which has made a huge difference. The treatment was every day (15 min) for 2 weeks.
Some people also swear by acupuncture for pain relief for back pain - never tried it, but I know someone who had great success with it. My mother said they offered it to her at Mass General for her cancer, and I imagine it is available many other hospitals.
I hope the Ibrance helps, and try to get some rest although it is not easy with kids - even a short 1/2 hr nap helps when things seem overwhelming. I tell myself and my kids not to think about everything they need to accomplish (too overwhelming) but just keep constantly chipping away at the to-do list, or the math problems, one by one… I compare it to the Red Sox winning the World Series despite being down all those games - they did it by forgetting the score and just focusing on each pitch - Pitch by pitch is not as exhausting and gets the job done.
Praying you will get relief soon.
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Femera SE might be causing a lot of your discomfort. I just came off femera 2 months ago fm risingand could not believe the difference I can walk down stairs now like normal person was going 1stair at a time. I also was shuffling and legs so weak. Now on tamoxifen and no joint pain. Dexamethazone 1mg daily. Only now I notice a change in mental state I seem blue not as comfy and relaxed as I was. Sure it's the tamoxifen. Faslodex is also used with Ibrance
Wonder if that would work easier on you. Good luck
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Holly, your baseball analogy made me smile. I'm a HUGE baseball fan and it's had such a positive effect while dealing with cancer the past 4 1/2 years. To be brief, my favorite team, the Giants, made it to the playoffs in Oct 2010. I was in the midst of my initial diagnosis that month. With each bit of bad news about cancer, I'd come home and watch the Giants keep winning. They won the World Series that year and I know it's the only thing that kept me sane during that very difficult time. They one it all 2 more times and this past October I took my youngest to game 7 of the NLCS and it was something the two of us will always remember. They got their ticket to the World Series that night and my son ( he was 10) got to live it up on The Embarcadaro with all the fans that night. Such a great memory
My lower back and hips are really hurting today. Hard to be up and about, still hurts laying down. Oxy not doing much. Contemplating dilaudid right now but don't want to be wiped out. Yes, I suppose it could be the Femara, but I've been on these AIs before and the pain seemed more like joint pain and stiffness. This is a throbbing, radiating pain. If it is the Femara, I'm in no hurry to chuck it because maybe it doing its job. I don't have many other choice besides IV chemo and I'm not in a hurry to sign up for that. Still waiting for response from my MO. I guess I'm hoping it's a temporary flare and will go away as suddenly as it started.
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Holly, your baseball analogy made me smile. I'm a HUGE baseball fan and it's had such a positive effect while dealing with cancer the past 4 1/2 years. To be brief, my favorite team, the Giants, made it to the playoffs in Oct 2010. I was in the midst of my initial diagnosis that month. With each bit of bad news about cancer, I'd come home and watch the Giants keep winning. They won the World Series that year and I know it's the only thing that kept me sane during that very difficult time. They won itall 2 more times and this past October I took my youngest to game 7 of the NLCS and it was something the two of us will always remember. They got their ticket to the World Series that night and my son ( he was 10) got to live it up on The Embarcadaro with all the fans. Such a great memory.
My lower back and hips are really hurting today. Hard to be up and about, still hurts laying down. Oxy not doing much. Contemplating dilaudid right now but don't want to be wiped out. Yes, I suppose it could be the Femara, but I've been on these AIs before and the pain seemed more like joint pain and stiffness. This is a throbbing, radiating pain. If it is the Femara, I'm in no hurry to chuck it because maybe it doing its job. I don't have many other choice besides IV chemo and I'm not in a hurry to sign up for that. Still waiting for response from my MO. I guess I'm hoping it's a temporary flare and will go away as suddenly as it started.
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Hi everyone, I was catching up, reading through the posts and know what it's like to experience these painful flares. When I was first diagnosed last fall, I had to undergo a spinal decompression and fusion as my back was in such bad shape (had been treating for back pain and compressiom fracture for 8 months before lesions finally showed up all over my spine after 2nd MRI!). Anyway, I had 14 rad treatments after, which significantly helped the back pain. I go to PT and after a session, I have a lot of pain, not just muscular. I think any type of overexertion, be it bending, walking too far, doing too much, just exacerbate are aches and pains. Romansma, the fact that you were on that vacation just little over a week ago, could definitely still be catching up with you. It's hard to accept that things I was able to do previous to this diagnosis without a thought and I took for granted are such deliberate, thoughtful, planned out tasks now. This diagnosis is not about a journey for me, it's a mutha-effin living nightmare. JMO
A thought about food shopping - I shop online with my local grocery store and then just pick it up when it's ready. It costs an extra $10 a week but they always have coupons and incentives, so I rarely end up paying that. It is the best and relieves a lot of stress for me.
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You are so lucky you can shop on line. Some people even have home delivery. We have nothing. You would think here in florida we would have something with all the old people down her, but no.
Hope, good point about just being on vaca and all that walking at the concert. Perhaps something got moved out of whack? Myra
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Hi Ladies I have been out of touch for a while. On a well needed vacation in the Carribean, but now that I'm back to work, I'm paying the price. Late nights Monday and today and a Continuing Ed class yesterday. Did go to my onc on Monday for my Glutathione and Vitamin D. Am very nervous since I had my markers taken and am very anxious to see the results. I am praying that this continues to work since it is so much better than what I was on previously. And for the first time in 20 months I have hair. It was so great wearing my own hair on the beach rather than the wigs I wore previously. Will know on Friday when I get my Vitamin C and D if my markers are down or hoping at the very least, stable.
About the Femara, I also have severe stiffness, but no pain. When I get up in the morning I can barely get to the bathroom without stretching first. When I've been sitting for a while at work and get up I can barely walk. But I still have issues with neuropathy from the Halaven I was on previously, so the stiffness is only an added difficulty. But I'm not complaining. I will continue to deal with this rather than some of the treatments I've been on previously. Again just praying that it works.
I love the in home food delivery. We have a delivery in the NYC area called Fresh Direct. When I was in St. Thomas I was able to compelte my order and have it delivered the morning after I came home. It's only $6.99 for delivery. I put on my Facebook page a while back that the 3 best things to happen to me in the past year are Fresh Direct, Uber and finding a good cleaning person. It's amazing what these things can do to make life easier.
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You guys are making me smile today! JJ, yes! I'd never refer to this as a journey, I like your term much better! We have grocery delivery here, I just like my routine of Costco and Trader Joes. I need to get over myself and start using the delivery service. I'm too tired to cook most nights, so I don't don't know why I worry about picking out just the right produce, etc. anyway, I've thought it could be everything I tried to do, but why didn't I feel it immediately after whatever it was that caused it. I was tired after the concert, but didn't feel the specific pain I have until 3 days later. Oh well, I've decided to give this another 5-6 days to see if it relents. If not, I will get in to see if MO can figure it out. Just hate the whole dog and pony show that happens when you report escalating pain. More appointments, scans, etc. not in the mood for it all!
So, I was still in bed at almost noon and starting to feel depressed. I got up, threw some jeans on and went down the street to get a manicure. Thought it would make me feel better. Not! I couldn't get comfortable sitting. Finally got done and had to sit to let them dry. I was really hurting in the really cool looking lucite chair and decided they were dry enough. Not! I messed them up trying to pay which was the last straw. Couldn't stop the tears at that point. The lady must have thought I lost my marbles. Had her take the polish off quickly and got myself back home. Felt like a frustrated 2 year old.
Anyway, MO just emailed me to let me know my ANC was ok to start the new cycle. It's only .8 which is after 7 days off Ibrance. Not far to go once I start again. Anyone do ok starting this low? Anyone know if the pain could be my marrow trying to produce wbcs? I know this happens with Neupegen and neulasta. Could it have been so low that it's having to work hard to catch up? Grasping at straws here, but really want to think this is temporary and not something bad.
Good vibes coming your way, Pearl. Hoping tumor markers are down, or at least stable. Get some rest soon!
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Romansma- Is it possible that you have a fracture? I hope not, but that kind of unrelenting pain reminds me of when I had fractured vertebrae. Nothing helped. Except radiation, finally.
I hope you get some relief soon.
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Yes, that has occurred to me, Sandilee. My last scan said most of my vertabraes were "fully infiltrated". Disturbing, but it wouldn't be a big surprise. I hope not, but if it's still the same or worse next week, I'll go find out.
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My MO took me off at .8. Made it to 18 days this time. He said protocol was not under 1.0. I don't know how you are starting so low. He was not concerned that we are starting and stopping. My body was getting used to it. RN said if its doing this to the WBC hopefully it is doing worse to the cancer cells. Me too! Hope, give yourself some slack. We are like pressure cookers.
Welcome back pearlady. I don't know if you read but the vit c and ashwagha worked fabulously on my platelets. Never went low this time. Stayed in the normal range totally.
Try to keep smiling all. We are in this together and here for each other. Myra. 😍
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Thanks everyone for the travel advice. I know it may not do much but I found an "ionizer" that you wear around your neck that people swear by...It was $59 on internet so I am going to try it...I am not worried about a cold, I am worried about being sick 6000 miles away from home.
Also I would like to say that I have had no side effects from Ibrance/ Femara since I have started taking it at lunch...If I have a sandwich, I take one half the sandwich and eat. Then I take my meds and eat the other half of the sandwich...I don't know if this makes sense but it is dissolved in food for sure. Anyway, I am doing great except for low white counts. and I appreciate the feedback that other MD's are not too worried about that...Also my tumor markers have dropped to 8/ So I am pleased and hope I can help when possible. Carolyn from Music City
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Romansma, I enjoyed hearing about your Giants - I remember when I first got cancer, my son did a book report on a book about Giants pitcher Dave Dravecki - what an inspirational story about his comeback and battle with pain and cancer! I hope you get an answer to your pain soon, but I know what you mean about the dog and pony show - ugh! Bring some reading and try to keep your mind off it.
I have been trying to go grocery shopping during the week and avoid it on the weekend since it's always mobbed - I try to go early in the day when it's less crowded. I like Trader Joes - good produce, and it's small so I can be in and out of there quickly. Also love their flowers which are very reasonably priced and might help lift your spirits. My 2 pink magnolia trees out front just went into full bloom - that too always gives me a boost, it is always the first sign that spring is finally here!
Carolyn, sounds like you are all set for your trip, have a wonderful time!
Myra, glad pear lady's ashwagha (whatever it is?) and vit c worked for your platelets, that's great to hear.
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FYI to all those thinking that Femara may be causing painful SEs:
In 2011 when I was first put on Tamoxifen I couldn't move after three days of taking it. After during some research I learned about E464 (Hypromellose). It is an inactive ingredient. I had to switch manufacturers.
When I was just put on the Ibrance/Femara, I found that it is used as an inactive ingredient in Femara also. So I had to do my investigating and found that the Teva brand of Letrozole (Femara) does not contain the E464. Every time I reorder with my pharmacy I have to specifically ask for the Teva brand. No automatic reordering.
Just wanted to share this information in case this small change could make a difference for someone else
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Ah, so much sharing of information. I love it! Holly, I AlWays buy cut flowers at Trader Joes! They are so inexpensive and it brightens my day.
I'm surprised at the differences in how MOs are treating low counts. I read something that Pfizer put out on how to handle the counts. I will have to find it and put a link here. I think I am questioning starting a whe new cycle at .8. A bit worried about where this goes.
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Romansma- Have you been able to have a real conversation with your doctor after your blood work? It sounds like you got info that it was ok to resume, but you didn't have any input. Would it make sense to give him a call and ask if you might hold off for another few days and see if your counts could come up? I think if you're worried (rightfully so, imo) your concerns should be considered.
My doc didn't seem to think that waiting another week until counts come up again decreases the benefit of the therapy. I don't know what his threshold is yet, as I'm too new, but I do know that he said if my counts aren't high enough, we just wait another week until they are. He seemed to think that would be no problem.
I assume the Letrozole is continued, regardless, as that isn't the thing lowering the counts, so you still have that.
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Chiming in on the lower back pain... I'm on my off week after round one of Ibrance and the lbp is kicking in. I had the pain, which included sharp pain in my thighs, then it eased once I started the Ibrance. Still no sharp pains but that familiar dull ache is back. Carol1 maybe it is the Femara. I started it with the Ibrance.
I consulted my RO when I was having the sharp pains and it was determined that the spots on my spine were relatively small - so the side effects/downside of the rads may outweigh the benefits. Sure would be nice to have some days without that nagging ache though.
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Sandilee, my MO seems to be of the same opinion as yours. Waiting a few more days til the counts come back seem to be of no consequence, and yes you do continue with the femara.
Hope, Sandilee has a good idea about having a good conversation with your MO.? Does he/she know how fatigued you are? Having concerns about starting up again, (IMO), is warranted.
Since many of us are having some pains, maybe it is the medicine working. Yesterday though, literally felt like my old self, went to the mall, bought something's and ate lunch out, all by myself! Something I have been afraid to do since dx. Shoot, (could use stronger expletives, LOL), we truly are guinea pigs.
Have a sunny and pain free day all...Myra
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PPAP thank you for the information about the Femara. I've been down the road before with some generics having less side effects than others. And from experience Teva is known to have some of the best generics. My only concern is that since I get it from CVS Caremark along with the Ibrance, rather than my pharmacist, that it will be difficult to request but I am definitely going to try.
Myra I'm so glad that the Ashwaghanda and the Vitamin C are working. My platelets have been good also. Also I've been taking Floradix (liquid iron) every other day for the low red counts as well as Maitake drops twice a day and my hemoglobin has been much better. Only issue is the white counts, but they didn't seem to go as low this past cycle and my onc was not really concerned.
Romansma I hope that you get the pain under control and are feeling better soon.
Hope everyone has a pain free day.
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Table 2. Dose Modification and Managementa – Hematologic Toxicities
CTCAE Grade
Dose Modifications
Grade 1 or 2
No dose adjustment is required.
Grade 3b
No dose adjustment is required.
Consider repeating complete blood count monitoring one week later. Withhold initiation of next cycle until recovery to Grade ≤2.Grade 3 ANC 3 (<1000 to 500/mm ) + Fever ≥38.5oC and/or infection
Withhold IBRANCE and initiation of next cycle until recovery to Grade ≤2 (≥1000/mm3).
Resume at next lower dose.Grade 4b
Withhold IBRANCE and initiation of next cycle until recovery to Grade ≤2.
Resume at next lower dose.Grading according to CTCAE Version 4.0.
ANC=absolute neutrophil count; CTCAE=Common Terminology Criteria for Adverse Events.Monitor complete blood count prior to the start of IBRANCE therapy and at the beginning of each cycle, as Except lymphopenia (unless associated with clinical events, e.g., opportunistic infections).
- Grade 1: < 2.0 x 109/L (< 2000/mm3) and > 1.1 x 109/L (> 1500/mm3)
- Grade 2: < 1.5 x 109/L (< 1500/mm3) and > 1.0 x 109/L (> 1000/mm3)
- Grade 3: < 1.0 x 109/L (< 1000/mm3) and > 0.5 x 109/L (> 500/mm3)
- Grade 4: < 0.5 x 109/L (< 500/mm3)
So, here's what I get from this info. If ANC drops below 1.0 during cycle, no dose reduction or withhold needed unless there is a fever. If ANC is below 1.0 prior to starting new cycle, you can consider waiting till it recovers over 1.0. Basically, grade 3 Neutrapenia PLUS fever/infection is the main indicator here.
My MO gave me the option of delaying the start of the cycle if I thought I had a virus or something going on, but that she wanted to see me if that was the case. I don't think I have anything going on, as far as infection, fever, etc. So, I swallowed that jagged lil pill!
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Romansma, thank you so much for that info! I've been super concerned because my ANC is below 1.0. But so far I'm not feverish so that's good. My onc didn't request a pause or lower dosage so I'm just going to go with that and hope I get all the benefits of the Ibrance Now to just make through that cross-country plane ride next month. Cotton gloves here I come.
Pearlady, looks like I'm taking the same liquid iron supplement as you are. I'm also taking 2,000 mg of vit c. Would you mind telling me how much Ashwagandha you take per day?
Thanks much
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Good information, Romansma. Your take on it seems sound to me. I just hope you get your pain figured out, which probably has nothing to do with the medication. How are you feeling today?
I'm on day 3 of the Ibrance/Letrozole combo and so far the only SE I have is headaches, and I'm pretty sure it's the Letrozole. I woke up with a doosey, twice, and it took a couple of hours to go away. I can deal, I think, if that's the only SE.
I'm hesitant to try any of the supplements that some of you women are taking, specifically the Ashwagandha, since it apparently can lower blood pressure. I'm already pretty borderline with that, so I'll wait and see how my white counts do on their own. I asked my onc if there was anything dietary I can take/eat to boost the neutrophills, and he said, no. Not that he knows everything, but since this is a common problem with a lot of chemotherapy that they see over and over, I would think if something works, he'd know about it.
Good luck,everyone. Not sure what I'd do without this site. Go crazier?
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thanks Hope amazing info.
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I just edited my last post. I use an iPad most of the time because it hurts to sit in an office chair at my desktop. This site isn't very friendly with mobile devices and it smashed the table I was trying to post. Anyway, I think it's a little easier to read now.
I'm still in pain today. I'm starting to think something happened. It was too sudden to be a progression. I think maybe I hurt myself even though I can't remember what it could have been. I messaged my MO and told her what's up and will see what she thinks I should do. Until then, I'm trying to take it easy and definitely keeping myself medicated! Gotta quit comparing myself to the me of years past, too depressing!
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Kaydeesmiles I am taking two of the Ashwaghanda daily. Not sure of the dosage, I would have to check from home, but think that its pretty standard. Has really helped to keep my platelets normal.
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PPAP,
thanks for your specifics on rogue ingredients in generics that make us sick...I totally believe this is what happens...I know we cannot all afford the brand names but I wish there was a recognition in the industry that there are ingredients in generics that make us ill. thanks for the info. Carolyn from Music City.
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I just finished my first round of ibrance, My TM's are elevated by almost 100 any body had this. I want this to work so much that this worries me.. I know you are not to go only on TM's but I are usually right on target. This is my first day on just the femera and I still feel good, No real noted side affects except maybe this slightly sore throat yet.
Best to all!
redroan
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Redroan,
One of my tumor markers also increased after the first round (CA27-29 increased from 1138(H) to 1208(H)). Like you, I feel fine so far, just hoping it is working and that the TM's improve.
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Could there be a bit of tumor flare with these meds? Tumor cells in blood as the tumor dies off? Or would this just be wishful thinking.
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"Some women will experience a phenomenon called "flare" with hormonal treatment of metastatic breast cancer. A flare can occur within the first month of therapy and is signified by an exacerbation of the patient's disease. Although it sounds bad, it actually indicates a good prognosis. Typically it occurs with someone who has bone metastasis and is put on tamoxifen. Suddenly the pain is worse than ever. But then it's back to normal soon after. Oncologists think this happens because tamoxifen can actually work initially as a weak estrogen in some women, stimulating their cancer, before it starts to function as an anti-estrogen. A flare can be very scary. A flare can also occur in the tumor markers. This is important to know because your doctor, seeing a rise in the markers, might assume that the treatment is not working, instead of recognizing the flare as a sign that it is working. "
I will look for more information on Letrazole and tumor flare, but we could be on to something here. If this is the case, it could be good!
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Good Morning All, my MO has mentioned flares to me. He said they usually happen w/in the first two months of tx. Let's keep our fingers crossed. My markers went down slightly, like 20 pts, but the lactose dehydranase, which also measures crap in your blood went to normal. So many numbers, between blood counts, TM s etc. being thrown around, so hard to keep them all straight, especially with chemo brain.
Enjoy another blissful, and hopefully pain free day in Ibranceland! Myra.
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Thanks Myra and Romansma for the updated information. I am so nervous to find out my TMs today. Mine are always right on and have been so since day one. My onc did tell me when I started the Ibrance that it sometimes worked very slowly and that we needed to wait a while to see if it was working. I am still within the first two months.
I did check my Femara and I am getting the Novartis brand name through CVS Caremark, so that is good to know. The side effects should be the least on the brand name.
Hope everyone has a pain free and great day.
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Good luck Pearlady.........
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I am joining the club! I just met with doctor and he told me preliminary results of the PALOMA 3 study show an improved benefit with Faslodex. Based on that, he is adding IBrance to the Aromasin and Faslodex I am taking. It seems silly but I am sitting here waiting for my Faslodex and XGeva shots with happy tears in my eyes. Anything that might extend my life and give me more time with my baby boy . . . .
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JFL I totally understand your feeling. We all do. Praying for you.
Myra thanks for your good wishes. I just noticed that you are getting or were on Faslodex. Are you still getting the Faslodex with the Ibrance? Just wondering since I have not had Faslodex yet and I know they are doing trials with Faslodex and Ibrance.
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Was on Faslodex for 2 months prior to the Ibrance. Then switched to Femara with it. Now I wonder if I will get switched back to Faslodex. This Ibranceland roller coaster just had another twist and turn added. Oy! Myra
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Welcome, JFL! This is a very interesting and informative thread, as well as comforting. I'm learning a lot from all the sharing, so feel free to chime in with whatever you're doing. And yes, I totally get your tears. :-)
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Myra- Would you want to be switched back to Falsodex? I don't think that the trials showed that Faslodex/Ibrance was superior to Femara/Ibrance, but that the combo of Faslodex/Ibrance was superior to Faslodex alone. I don't think they have had any trials to compare the two against each other yet. I may be wrong.
If it were me, I think I'd want to stick with Femara for now, and still have Faslodex in the bag for the future. It's always interesting to see what the doc's think.
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That's what I was wondering if they have compared them. Now that would be an interesting study. I thought that was why they were trying the Ibrance with the Faslodex. I failed both Femara and Faslodex alone. Myra
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I had read that they were trying Faslodex just to widen the pool, the way they did with Aromasin/Femara/Arimidex. To give us more options. So that if someone didn't respond with one, they could try another.
I also heard there was an early trial, I think in Japan, with Aromasin and Ibrance.
In order to really compare, they would have to do trials like they did years ago with Tamoxifen against the AIs, double blind.
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Sandilee I agree with you about sticking with the Femara and hoping that it works. I was NED on Femara for almost 5 years and was wondering if the Femara would be effective again with the Ibrance. I think my onc is thinking like you are, that we wants to save the Faslodex for when I really need it. So hopefully the Femara and the Ibrance works well and I don't have to use up an additional option. I also saw where they are doing clinical trials with Ibrance and 5FU.
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The more combos they approve, the better for us! If it looks like Ibrance works with most things, it really will prove that it's an effective drug.
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Wow, it is so fabulous that you women are so up to date. All great things to keep in my arsenal to speak to my MO about. Thank you, Myra
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Myra the more options we have the better for all of us. I'm thinking ahead that if I don't get the results we're hoping for on the Ibrance/Femara combo maybe my onc would be willing to try a different combo rather than giving up on the Ibrance. I think for the women that have not had Femara previously, there's definitely an advantage.
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I really hope it would work that way, pear.
From the drug companies' perspectives, they would each like Ibrance to work with their money-making drug-not just Femara. I'm sure that is a driver of these trials- it's not all altruistic. But as long as we beneftit- yay!
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Welcome JFL. May this new drug give you, and us all, many more years.
Thank you pearlady for the info on the ashwagandha.
For what it's worth - I was on AI + Faslodex for about eight months with a jagged and very slight downward trend in tumor markers. But back pain got steadily worse over that time period. When I was switched to Ibrance + Letrozole (gonna look into changing brands because these headaches are worrisome) was told that it might make sense to bring the Faslodex back into the mix if I don't get desired results on current combo.
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I just checked my Letrozole and it is the Teva manufacturer. I think it was PPap that brought up this manufacturer as one of the better ones?
Still in pain, but I'm psycho. One day I'm sure it's a fracture or compression, the next I'm sure it's a flare! Today, I want to think it's a flare and this is predicting a good response! Either way, I have messaged my MO and I go in for Xgeva this afternoon so maybe she will be around.
Anyone else here ER positive, but PR negative? Response to these drugs is said to be quite a bit less in those that are PR negative. I think I read the response is typically around 33%. May be why I've failed most of the hormonals so quickly. I took Faslodex with Femara and progressed pretty quick. I think it was 4 months. I'm interested to see if Faslodex with Ibrance may be an option if the Femara/Ibrance stops working.
Hang in there all you neutrapenic ladies! Think maybe we should have some gloves and masks printed up with our Ibrance super logo!
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Hope, I am really not sure what my ER/PR was.I was originally dx'd in 1998, just when all these markers were coming out. I was NED 16 yrs. before I had the stage VI dx last June. I thought I was free and clear. Quite a shock. Myra.
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Yes, Romansma, I'm PR-. But Faslodex worked really well for me for nearly 4 years.
Go figure.
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Hi Ladies,
I got scan results today that showed small spots in my liver (previously NED), so it looks like it's time to switch treatments. I've been on Afinitor/Aromasin/Faslodex and my onc plans to switch me to Ibrance and Femara. Just wanted to get in this thread and see what suggestions you ladies have for managing side effects on this treatment. Also, have you had success with this combo?
Wishing us all the best on this new drug,
Julie
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Hi jnh,
I am on my second round of Ibrance/letrozole - failed letrozole alone, and failed faslodex alone. Not sure yet if the Ibrance/letrozole combo is working, but I can tell you I have not had negative side effects other than low blood counts which have not been a problem for me so far, and the red itchy skin bumps I had with faslodex have cleared up and disappeared since I stopped the faslodex, so that has been great since they were always bleeding. I hope you have success with the Ibrance, it is great not having the side effects. Good Luck!
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Hi jnh, I will reiterate what Holly said. Failed femara and fasolodex on their own. Second cycle of Ibrance, so far SEs mild other than some aches and pains and low counts. Here's hoping you do well. Myra.
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Hi there jnh,
I am also in the group that has manageable SE's but low counts. Have had a decrease in back pain after one round but an uptick in headaches which could be from the Letrozole. Welcome, and I wish you much success with this drug.
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Romansma,
Like you, I was originally ER/PR positive but was ER positive PR negative upon mets diagnosis. Where did they biopsy you? Mine was done in a subclavian lymph node. My doctor said it could be that I mutated or could be that the (small) stain they had for biopsy didn't have any progesterone receptors in it although I may still be PR positive. The jury is still out.
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Greetings ladies, just throwing in my understanding (2cents)re the Paloma trials. I'm delighted Paloma 3 (faslodex) is reporting early. That means lbrance is showing good activity after the failure of a couple of lines of hormonal therapy.
The lbrance and femara trial that got FDA approval originally had only women who were taking a hormonal as first-line. Many drugs are pretty amazing as first line when tumor cells haven't ever been treated or not treated in awhile but resistance can build rapidly with each subsequent line. The Paloma /femara trial was only opened up to women who had failed hormonal or done the a/a combo after the good data was in. I'm not sure how long it will be before this extended access data becomes available on femara and pretreated ladies.
Paloma 3 ( the newest trial) if the early analysis holds, says that lbrance is very active in heavily pretreated women. That's a new insight and wonderful news. So it's not so much about a femara/fulvestrant comparison as it is first line verses third line because that's historically how most of the world orders the delivery of these drugs.
Yeah to trials that are giving heavily pretreated woman a stab at the new drugs!!!
At least that's how I've been reading the trial data 😉
Sophie
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thx Sophie, awesome insight. Myra
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