For Arimidex (Anastrozole) users, new, past, and ongoing
I found a couple of older threads about Arimidex, but they covered a large time span with a gazillion posts, so I thought I would start a new thread for Arimidex/Anastrozole users.
I am starting on Anastrozole today. Plan is to take it for 5 years, possibly longer. I already have osteopenia and osteoarthritis (limited to one knee at this point), so I am most concerned about the bone and joint side effects. I'm already frustrated by finally having some energy and stamina back after chemo and radiation, but now I have trouble exercising due to the bum knee. I'm concerned about that getting to be even more of a problem on the Anastrozole.
Please share you experiences, side effects, questions etc. about Armidex/Anastrozole here.
Edited by Mods to add content from the main Breastcancer.org site on Arimidex: Benefits, Side Effects and More
Comments
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I've been on Anastrozole since February of this year (only 4 more years to go!!). I have the hot flashes and night sweats but nothing unbearable. What has suddenly gotten worse is the joint pain in my feet and thumbs. It's only bad when I first get up in the morning, but after I get up and moving, it gets better. Luckily it hasn't stopped me from working out. I didn't have any of the weight gain that other people have talked about; actually, I have lost 10 pounds since I started the medicine. I would also like to hear what people do to help deal with the joint pain and hot flashes. I did hear from someone who takes Potassium to help with the side effects, and even though she swears by it, my oncologist says he has never heard of that. My thoughts are with you, and I hope the side effects are OK for you!!
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Hi Gina. Thanks for sharing your experience. My onc did tell me that the joint issues tend to be worst first thing in the morning when our bodies have basically been inactive all night sleeping. I tend to get up several times a night to pee, so thinking of somehow incorporating just a minute or so of some sort of stretching to see if that helps when I first get up in the morning. Of course I am still half asleep and on total auto-pilot when I get up to pee, so may be hard to incorporate anything new in that state.
Glad to hear that you haven't had the weight gain SE. My weight was at a good place for me before DX and stayed pretty stable during chemo (I lost and regained the same 5 pounds every 3 week cycle). But then just after chemo but before surgery I stopped smoking and have packed on some pounds due to that and because I hadn't been exercising much due to fatigue and then the bum knee. At this point I need to lose at least 20 lbs.....maybe even 30..and certainly not gain any more.
Do you mind me asking how old you are? In your photo you look way too young to be on a post menopausal AI.
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I just started Arimidex a couple of weeks ago. I had been on Femara since the end of last summer but I was experiencing more aching than I did on chemo. I also developed a trigger thumb suddenly after about the first six months. I did a washout period of 2-3 weeks, then switched over. I am finding less joint pain on Arimidex - I had been having trouble getting out of the car and taking the first few steps, and also standing up after sitting for any period of time. At the same time I stopped eating gluten and I am wondering if this has been helping also. I had read on the other threads that some have noticed less joint pain when they did this. I am walking 4 miles a day with problems - once I am moving my joints don't bother me. When I first get out of bed, probably the first 20 steps or so I am very stiff. What time of day do you take your AI?
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Wow SpecialK.....another one that looks way too young to be taking AI. Glad to hear you are doing well on Arimidex so far, especially with the less joint pain. I'd love to get back to walking 3-4 miles a day. Hopefully I can work back up to that. I got a cortisone shot for my knee yesterday and today it is feeling much better.
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Thanks for starting a new thread on this topic. I have been on Anastrozole since Sept. of 2011 and have not experienced any physical side effects. However, my blood sugar on subsequent blood tests has been elevated for no apparent reason. I am not overweight and I have a good diet. I have my next check-up on Monday so will find out then if it continues to rise.
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nancyjac - thanks! I am actually in my mid-50's. I had a complete hyst/ooph 11 years ago so I have been menopausal for a long time! I am also osteopenic - had been stable for about ten years, but worsened at every checkpoint on my last bone density. I am now receiving Prolia injections every six months - next one is due in August. I have not had any SE from those, and hopefully it is working to prevent any further loss, and rebuild the loss I have. My MO said this could take up to two years. Hope your knee improves enough to let you start putting in the mileage. The trigger thumb I have can be treated with a cortisone injection as well, but I am giving it some time to see if it resolves on its own.
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nancyjac - thank you for starting this new thread. I just sit here and watch as the posts on the other one climb to almost 5,000 - and I have to tell you it's intimidating.
I got my Rx for Anastrozole on January 3rd of this year. I haven't opened it yet.
My MO said I could wait til I was off the post-surgery/TE fills pain meds.
I gave her a gazillion reasons why 1) I didn't NEED this drug, and 2) was AFRAID of this drug.
After my BMX, my risk factor for recurrence was 1% - 2%.
I had mostly DCIS, with a microinvasion of IDC: one area that was 1.5mm (half a grain of rice) and .5 mm (a grain of salt). Neither one showed up in my final pathology report. They said the core-needle biopsy must have gotten it all.
I was also 14 years post-menopausal, and I'd had a hysterectomy, so there was no way I had any excess estrogen floating around. She kindly pointed out that estrogen was continuing to be produced not only in the adrenal glands, but also in body fat, of which I had plenty.
At that point I made the decision to enter a medically-supervised weight loss program (Optifast) and am almost at my goal. So far I've lost almost 50 pounds. The MO says this has further reduced my risk factor by 23%. So now it's at .77%? Less than one percent?
I explained that I had so many other medical issues going on in my life, especially osteopenia, degenerative disk disease, spinal stenosis, and fibromyalgia. It was already difficult for me to get out of bed in the morning.....and despite going through a ten week chronic pain management program, there were still days when I needed Vicodin during a particularly nasty fibro flare.
She mentioned that not all women get side effects. (Hard to imagine, while watching those posts on the other thread add up every day...) I also kept hearing my mom's voice (a 26 year BC survivor when she passed at the age of 87) in my head, saying "Honey, you won't know until you try." I also read many, many comments from Stage IV women who wished that the AIs were an option for them.
So I told the MO that I would be willing to try the Anastrozole, but that I would be keeping careful records of any side effects. She understood. I said I MIGHT try another drug should the SEs be debilitating. She understood. I said that my QOL was more important to me, and that there may come a time when I said I wanted to stop completely. She agreed.
The only remaining issue is the fact that she also wants to put me on one of the bone-building drugs. THAT is one thing that I will probably refuse, especially with the current research showing so many problems....
Here is something that has really surprised me: SpecialK mentioned this in her post.....since beginning this diet on March 22nd, my fibromyalgia and joint pain has diminished considerably!
I don't think it's from weight loss or exercise alone, even though I am now able to go to the gym, water aerobics, ride my bike, and walk a few miles a day.
I believe it was getting off the white sugar, white flour, and GLUTEN. (Optifast is gluten-free.) I always wanted to go on an elimination diet to see if it would have an effect, but it was too hard - waaaaaaaa - and now I've been gluten-free for four months. I won't be adding that back into my diet.
I got a reprieve on the Anastrozole while I was on Optifast. This week we slowly start adding real food back into the diet for the next 14 weeks. I see the MO in September. I have a feeling I know what we'll be talking about....
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Fascinating story Blessings, and sounds like it has been very positive for the most part. Please keep us posted on how it is going.
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I'm in my third month of Anastrazole and have had absolutely NO side effects! I keep waiting for something to show up, but so far....nada. No fatigue, no weight gain, no joint pain, no nuttin'! My MO said MOST women have no or very minor SEs. I am MANY years post-menopausal (age 65) and my bone scan was fine so I'm not concerned about bone loss at this point. I'd rather start out taking something knowing that I can quit it if necessary.
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That is great to hear Snoopsmom. Please continue to keep up posted.
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Another happy Anastrozole customer! 7 months in and no complaints. I also get monthly Aredia infusions. I do take glucosamine, am not overweight and am physically active not only at work but I excercise almost daily. I am also NED! Some people do have bad se's but you will never know until you try it. You can always stop. Caryn
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I was on Anastrozole for one month and went to my Dr. and told him I could not take it for 5 more days let alone 5 years. It affected my sleep to the point I was sometimes awake for 24 hours at a time. I hurt all over, and I cried at a Hallmark commercial. I had no appetite, was constipated and was bone tired even if I did sleep. He changed my medication and within a matter of days I began to feel better. I have a few minor things still going on, but I'm unsure if the radiation is affecting those, so I won't know for sure for another few weeks if that is true. I feel soooo much better. For me, I would simply go without if Anastrazole were my only adjunct treatment option. Thankfully we do have other options out there.
My Dr. says I may have to change to Tamox because of osteoporosis and my inability to take anything for it. I'm scared I will have more side effects again if I change now, but don't want to hurt my bones even more by taking it. It is so confusing! I have read that some recommend Tamox for 2-3 years and an AI for the balance of the 5 years. I may go that route. I'm trying to firght the osteo with diet and exercise, but I won't know how effective that is working until next years bone density test.
Anyway, I hope that's not TMI. :-) I know we are all different and react differently to treatments. This was mine with Anastrozole.I hope your experience is better. Good Luck!
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Nancyjac, this thread is very helpful, thanks for startingit. I'm still frightened, but will let you know how it goes once I start arimidex.
Susannah -
Welcome Susannah. We can learn together. I just started on anastrazole this past week, so no effects yet. Some have said they had no SE for the first 2-3 months.
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Will be finishing off my 5 years of Arimidex in August. I was a little 'creaky' and 'flushy' in the beginning, but I just kept busy and moving. Once my body adjusted, I was fine and I have had not had any problems; weight stayed the same, bones are still good as is everything else.
A couple hints to help those just starting out:
* I think some of the SEs attributed to arimidex are actually 'just' post treatment SEs. I especially think this is true of feeling down/mood issues. You have been on a fight or flight mode since your diagnosis, and suddenly you are DONE! That takes a good deal of physiological adjustment, at least it did for me.
* if you have been exercising, keep at it. If you haven't been, start. It's great for the mood, the figure, how you feel about yourself, helps fight any weight gain, keeps your joints limber, keeps the bones strong, etc. etc. etc.
* a daily serving of prunes is a good bone builder
* be grateful that there is something we can take that really does reduce our chances of recurrence. I can't think of any SEs that would be worse than that. For me, chemo reduced the chance that cancer would come back by 20%, Arimidex by 40%....that is HUGE!
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Thanks so much for that great info Ruth. I hope my course of goes as well as yours has. 40% certainly is huge!
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Nancy, I have a friend who just finished her 5 years also. She went into it with osteopenia too but didn't experience any more bone loss (she does a lot of weight bearing exercise). It is something you will want to keep good track of though, possibly get a yearly DEXA instead of the usual every two years.
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Yep, that's the plan Ruth. I had a DEXA scan at the same time as the mammeogram that ended up being diagnosed as this cancer, so will will have one come Oct/Nov, right around a year after I was diagnosed. I'm tryiing like heck to get back to weight bearing exercise, but with a bum knee and some residual peripheral neuopathy, it's been hard to do it consistantly enough.
I also quit smoking after chemo. Between my taste buds recovering from chemo and now being a non smoker I have managed to pack on an extra 15 pounds that I don't need. So the exercise component is doubly inportant for me.
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I got a card from my MO. She wants to see me in September. I've been flying under the radar on Optifast, but I guess she's been keeping track of me on the computer!!!!
Rats. She gave me a reprieve from Anastrozole until I got to the Transition phase of the diet, which I started on Thursday. I thought maybe if I didn't tell her, she wouldn't find out?
Ha!
Seeing the PS next Thursday to discuss exchange. Maybe in August?
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Has anybody experienced any nausea from AI? I've only been taking Anastrozole for not quite a week but the last couple of days I had some very slight on again off again nausea. Only lasts for a few minutes and no where near the throw up level of intensity. Might just be something I ate?
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Nancyjac - I had moderate nausea off and on for the first two weeks of taking arimidex. Hasn't returned at all in the 3 months since.
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Thanks for that info doxie. Very good to know.
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You could try taking it with food (or not with food) or at a different time of the day to see if that makes any difference.
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I have been on Arimidex for about 18 months now and I started having joint pains in my fingers and toes around the 6 months mark and thought about quitting or changing but stuck it out . I had trigger finger in my left thumb and middle and ring fingers and they would swell up so much in the mornings that I had to take my rings off. I missed them so finally got them re sized. I remember my toes aching but the more I moved in the mornings the better I felt. Also I found that running hot water over my hands first thing in the mornings helped alot. Now 18 months later I still have the aches and tiredness but nothing that I can't live with.My trigger fingers are gone and I am feeling much more like my old self. I started out taking it at night but change to mornings much better for me .Hang in there ladies.
Nancy
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I started arimidex last november, I think. Within the first month I had stiff fingers, legs, and couldn't make a fist with my right hand. But I noticed in the last month or so, the stiffness is much less. I've been on Zoloft for a while, no hot flashes. I have arthritis in my left knee, but have been doing physical therapy and the pain is improving. I seem to be less tired, too... Still fuzzy headed at times.
If you start arimidex after chemo and rads, I do think it's hard to disentangle the SE's at the end of treatment from the arimidex SE's.
I gained at least 20 lbs on chemo, but as of this week, I've lost almost 30 since last August.... Exercise and low carbohydrate eating, and practicing mindfulness. I don't know...it's not like the angsty dieting that never worked in the past. -
edot, that great about being able to lose the weight!
Question for all...Has anyone tried taking Arimidex in the afternoon with lunch ???
I take my arimidex in the evening at the moment....I tried it in the morning for awhile too. I was hoping one time would be better than the other but it seems each comes with its own problems. When I took it in the morning, I seemed to be more achey and get more hot flashes in the day. (hated that) When I take it at night now, I am probably sleeping thru most of the hot flashes but I'm having a terrible time falling asleep.
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Lee7 - I am on a different AI, but I take mine at lunch. Taking it in the evening, especially when I tried Anastrazole, gave me insomnia. I went from having it take me an extra 15-20 minutes to get to sleep, to a few hours, to not sleeeping at all. I was like a zombie after 2 weeks. Mornings didn't seem to work well either. Now I set my phone alarm to remind me to take it at 12:30. So far that seems to be working. :-)
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Ok - here's my story.
I started Arimidix in March last year, and for the first couple of months had bad pain in my knees. I was taking glucosamine, fish oil and vit e as well as calcuim and magnesium. I started out not too bad, but progressively got worse. Insomnia, very bad and I was used to my head hitting the pillow and out like a light for 8 hours, but some nights would be lucky to get 2 hours sleep. Joint pain spread to my hips and elbows. Depression and something very like chemo brain started. I developed trigger thumb, and the palm of my hand on that side would burn for hours.
In March this year I developed very bad lower back pain and my chiro couldn't fix it. He finally recommended I see my doctor and ask for a bone scan. We were all worried about mets. The bone scan showed degenerative arthritis in both feet, ankles, knees, elbows, wrists, hands, right shoulder and lower back. I'd had a bone scan in September 2010 just after dx and everything was clear.
My onc told me that Arimidex doesn't cause joint problems in the larger joints and it couldn't be the Arimidex, but agreed that I could go off it and go onto Aromasin. I've been off Arimidex for almost 2 months now (and start Aromasin in a week or so) and the difference is amazing. I'm full of life - my brain is working again, I'm sleeping properly, my back still hurts, but nowhere near as bad and I've lost 10kg! I feel like a new woman lol. I can't believe how good I feel - haven't felt like this since before dx.
I'm hoping that the Aromasin doesn't have such bad se's for me. My QOL on Arimidex was terrible, but I'm highly ER+ and if I don't take something my chances of recurrance go up by around 9%, so it wouldn't be an easy decision to make if I decided to go off an AI.
I can finally wear my wedding ring again too - lol my fingers were like little sausages.
I know not everyone has these se's and I'm hoping that Arimdex treats you kindly. But it clearly wasn't for me.
Trish -
Trish - your storypretty much mirrors mine only mine started within days of taking it. Apparently I am extremely sensitive to something in Anastrazole. I am currenty on Aromasin and have had virtually no side effects. My only concern is the bone loss aspect. I cannot take anything oral or injectable for osteoporosis. I know that Tamoxafin is better for the bones, but I am concerned about side effects. Also I have read that the better option is 2-3 years on an AI and then the balance of time on Tamox. This would be after 5 years. All the other studies I've found show no difference at the 10-year mark whether you've taken 5 years of an AI or 5 years or Tamox.
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Ruth and Nancy, thanks for the info, very helpful.
Nancy, have you tried taking an antacid? I've had some problems with nausea during radiation, and Zantac was helpful.
Susannah -
I think I'll try arimidex for lunch and see what happens...I see my Med Onc later this summer and I may ask to try another AI. It sounds like just switching has helped a lot of women. Doesn't Aromasin works a little differently than the other two AI's?.
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I have some Prilosec left over from chemo. I didn't have nausea with chemo but I did get indigestion a lot. I haven't taken any since I started radiation and haven't really needed it. Haven't had any more nausea since this morning and even then it was very slight and only lasted for a few minutes.
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Mini1 - then I hope I'm like you and have no se's on Aromasin. Interestingly though my bone density showed I had the bones of a 17 year old - a healthy well boned 17 year old lol.
Trish
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Trisha - my bone density showed I have bones worse than my 82 year old mother-in-law.
I have found probiotics to work much better on my stomach than Rx meds. If you do dairy, kefir in drink form is good. It's in the dairy case with the yogurt. It comes in many flavors and have more probiotics than yogurt and supplements.I hope you have good results with Aromasin too! If not, I believe there is one other you can try. Good Luck!
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I have been doing extensive research on this very subject as I am ERPR + and I just had my Hysterectomy to rid my body of my estrogen as my Tamoxifen failed and started to cause Uterine Cancer as a result. The Onc wants me to take Arimidex, which is an aromatase inhibitor and will benefit you as well. Dropping the weight too will help as estrogen hides out in the adipose tissue's and this is my next plan of attack as my ER assay show's that I was a 99% estrogen status. If you have any type of cancer that is ER driven, the priority would be to rid your body of as much production as possible. The only bad thing about any AI is it cause's bone loss from lack of estrogen so taking Strontium or a calcium plan of mag, pot, Vit D and calcium glucarate will decrease the bone loss activity.
What is estrogen?
Estrogen is an entire class of related hormones. They include estriol, estradiol, and estrone.
Estriol is made from the placenta. It's produced during pregnancy.
Estradiol is the primary sex hormone of childbearing women. It is formed from developing ovarian follicles. Estradiol is responsible for female characteristics and sexual functioning. Also, estradiol is important to women's bone health. Estradiol contributes to most gynecologic problems such as endometriosis and fibroids and even female cancers.
Estrone is widespread throughout the body. It is the only one of the estrogens that's present in any amount in women after menopause.
Estrone (E1) is found in adipose tissue/body fat, (E2) Estrodiol, Estriol (E3)-confirm this as could be inaccurate-Progesterone (pg) DHEA-S (DS) and Cortisol (c)
Estrone is synthesized via aromatase from androstenedione, a derivative of progesterone. The conversion consists of the de-methylation of C-19 and the aromaticity of the 'A' ring. This reaction is similar to the conversion of testosterone to estradiol.
http://pubchem.ncbi.nlm.nih.gov/summary/summary.cgi?cid=5870&loc=ec_rcs
I'm not sure about AI's or Bisphosphonates. I'm fresh out the gate with diagnosis in Aug 2011, did all the adjunct stuff, now Total Hysterectomy and I'm suppose to be back on my Arimidex but it gives me terrible SE's; My Onc wants to move on but I'm stalling-I had reaction to Tamoxifen which led to the Hysterectomy and Arimidex say's on pkg if your sensitive to T then A not going to work either. I'm a poor metabolizer and I feel if the little left Estrone (E1) in my adipose tissue can be addressed then I can slim down a lot-from what I understand estrogen lives in fat tissue, there's is nothing I can do about the estrone that the adrenals make but without any estrogen the body will just convert testosterone (Estrodiol) so your never going to be without any estrogen in your body. Aromatase, an enzyme in the body, turns the androgen testosterone into the estrogen estradiol. Estrogen converting cells in the adrenal glands, ovaries, placenta, testicles, adipose tissues, testicles, and brain contain this enzyme-too little androgen can cause several health problems-Arimidex cause's many SE's. I am in experimental mode right now. I am doing lab work on the estrogen panel giving me a baseline with no Arimidex then in 3 months, I will take the Arimidex-3 months from then, I will compare. If there is no huge drop in the estrogen panels then I do not see why I would need to take Arimidex, remember, I am a poor metabolizer of drugs and what doesn't work for me may work for you. This is just how I choose to gauge it.
Also, if your postmenopausal, your more than likely to be prescribed the Arimidex or some other AI-this is a paragraph from the prescribing sheet of Arimidex; 12.2 Pharmacodynamics it states: Effect on Estrodiol: Because aromoitization of adrenal androgens is not a significant source of Estrodiol in pre-menopausal women, Arimidex would not be expected to lower Estrodiol levels in pre-menopausal women"; so chemically, they are two different drugs-Tamoxifen is blocking the predominant source of Estrogen from the Ovary's while the Arimidex is inhibiting manufacturer through the adrenal glands and other areas of the body. Also noted in pkg info is that Arimidex blocks only 70% so it is certain that at least 30% of estrogen will remain in the body so if your doing panels with your ND, you will still have trace amounts show up, I did however read a study on Arimidex that it keeps lung mets at bay as the lungs require hormones to neccessitate their function. The reason I'm doing this is I took Arimidex offf/on for a few months now and every time the bone pain is horrible..... -
Thank you nancyjac for starting this new thread on hormone blocking therapy. The other one was becoming somewhat overwhelming. I have been on Arimidex for almost 3 months now. At first I noticed some aching knees and my thumbs ache but for the most part, the joint pain is minimal. My tumor was 95% estrogen receptive which surprised me as I had a complete hysterectomy 10 years ago, plus I have always been thin. The breast surgeon told me I get estrogen in other ways, through fat and food. The one side effect that I have experienced that I don't see mentioned by others is tender breast, particulary in my good one. The literature I got on mine said that was a side effect but with my upcoming 6-month mammogram next week, I am getting anxious. Just in the last two days I have switched to decaf coffee (only drink 2 cups a day anyway) and I think I may notice a difference. I may have some enhanced fibromylagia pain in my right shoulder too but this is something I have lived with for years. Still......we cannot take these aches and pains for granted anymore. So now I need to get my butt off this computer chair and go for a walk. I find walking and being on the move does indeed help. Good luck one and all, Allagashmaggie
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A couple of people have mentioned that they ER+ even though they post menopausal, post hysterectomy, not overweight, etc. According to my MO, none of that has anything to do with being ER+. The measure of ER+ (i.e. % receptive) is the number of cells in the sample that had estogen receptors. It is based on the structure of those cells and is not affected by whether or how much estogen is available to those cells.
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Nancyjac,
That is exactly how my mo explained it to me. It has nothing to do with having estrogen in your body. It is the estrogen receptivity of your tumor cells. Caryn -
Yeah, I tried that "I don't have any estrogen in my body!" argument with my MO....it didn't work.....
Still in reprieve from starting the Anastrozole, but that's only gonna last another month or so, I think....
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I agree with Maggie, thank you for starting this thread nancyjac, and thank you for the encouraging report Maggie. I know that caffeine can make your breasts tender, hoping that's all it is.
Susannah -
I had horrid SE's from Anastrozole. I told my Dr. I would go without anything before I would take it. He changed me to a different AI and I could tell the difference within days. I virtually no SE's. I have osteoporosis which I will try to control with diet and exercise for as long as possible so I don't have to change meds.
Thanks all for all the good info!
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Well I have been testing out the effects of the cortizone shot on my arthritic knee the past couple of days and so far it has been great! I walked on it quite a lot so far this week and it hasn't been any worse at all for the wear. Last time I tried this (pre cortizone shot) I hurt so bad for several days after that I could barely walk at all. But that is just part 1. Because I have been able to really exercise again, I feel so much better in just about every way. My energy is better, my mood is great, I am sleeping great, and I don't mindlessly munch on junk food just for something to do. Only down side is that I am probably really tempted to overdo because it feels so good, but what keeps me in check is that I know I would just hate it if overdoing it made me have to stop exercising again.
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NancyJac - Glad to hear your shot went so well. I'm looking forward to some energetic days ahead when radiation ends next week! I never thought I'd hear myself say this but I miss exercising. :-)
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Exercise is a magic bullet!
If you want to, check out the 'Lets Post Our Daily Exercise' thread on the Fitness Forum. A great, fun group of ladies in all stages of treatment and beyond who keep ourselves accountable.
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Ruthbru- Thanks. I hadn't seen that thread. I'll check it out!
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I agree! I believe that my commitment to exercise has been critical to minimizing se's from Arimidex. I also have a job that is not sedentary. I find that I only get a bit stiff when I sit around a lot but can walk it off in a few minutes. Caryn
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We were told in my Optifast program that if we wanted to keep the weight off permanently, we needed to exercise at least 60 - 90 minutes PER DAY!!!!!
Of course, this doesn't mean all at one time....we can break it up into however many small increments we want to, throughout the day. We just need to keep moving.
I just hate to think that all my hard work (50+ pounds lost) will be undone by the AIs, but maybe now that I've given up my couch potato status, it will be o.k.
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nancyjac, thanks for starting this thread. It's much easier to keep up with than the other. I started anastrozole a month ago.
I'd had a DEXA scan prior and I was osteopenic but I've started walking again and being more vigilant about my calc/D3 supplement, so hopefully it won't get worse. So far my only real noticeable side effects are mild hot flashes (nowhere near as bad as when I went through menopause).
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Blessings - I have the opposite problem. I was actually looking forward to to the weight gain side effect. I know, boo hoo, but believe me I'm having a much harder time trying to gain back 22 lbs than I did doing Weight Watchers and losing almost 30. Anyway, Ive gained a whole 2 lbs in 3 months on AI's and I think that is from not working or moving as much as usual not the meds. I have a feeling when things get back to "normal" I will lose those 2lbs. I've met people that have gained and some that have not. It's not a given that you will gain weight from the AI. :-)
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Thanks everyone for your comments. I am starting Anastrozole tonight. Praying all goes well and no SE. I already feel like I'm 90 when I get up in the mornings so I'm nervous about the joint SE.
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Msbelle I feel your pain and worry. Wishing u good look, and no SEs.
Susannah -
Hi, Mini1 - believe me, I understand that whether it's losing weight, or gaining weight, it can be a tough personal challenge. I remember YEARS ago, I ran into a friend I hadn't seen for a while, and the first thing out of my mouth was "Oh, you're so thin!"
Of course, later on, when my brain kicked in, I realized that was just as insensitive as if she had said to me "Oh, you're so fat!"
So I called her and apologized and we chatted, and fortunately, she wasn't ill, just under a lot of stress, and was having trouble putting the weight back on.
And you're right...it's not a given that any of us will get any particular side effect from the AIs. I think it's just my personality that when I see a thread with around 5,000 posts from women who have had side effects, I think, yep - that will be me!!!
The women who don't have SEs, or have very minimal ones, are not usually the ones who post on these threads. I'm so happy to see some here!!!! Gotta stay positive!
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I perhaps take a different view to the AI's as I had been post-menopausal for something like 8 years before BC and was one of the "lucky" ones that my normal aging menopause was already in overdrive with no end in sight. My "normal" menopause symptoms that I had suffered with for a decade seem pretty much as severe as those experienced by those forced into menopause by BC treatment. I was already a ticking timebomb so my doctors pretty much said suck it up or incur high risk if I wanted to try hormone treatment. I sucked it up. They had no idea why most women do not have this big a problem and why some get alot better in a few years and others don't or even if it would ever end. All that said, I already had all of the litany of symptoms BEFORE AI's. I looked at the benefits to risks for my specific case and decided against chemo. My MO said fine but make the AI's work. Didn't care which one but make it work!!! I am VERY high ER+/PR+. I am making it work. So that is the premise I am operating under. However, have not seen anything so far that I cannot live with or that really is any worse than what I was already living with. In fact in two years of AI's, my hot flashes have actually improved alot. Not gone but so much better than before. The AI's seem to have sort of spit me out the other end for that one.
Looking from my personal menopause experience and then reading on menopause in general, much of what we complain about are "normal" side effects of menopause which whether as a normal part of aging or drop-kicked into it by chemo-pause, is all somewhat to be expected from a lack of estrogen. Hot flashes, night sweats, dry skin, thin hair on head, a few extra on the face, osteopenia/osteoporosis, difficulty sleeping..... all normal to one degree or another.
I remember a doctor saying to me about some symptom probably 15 years ago "Welcome to middle age." I guess I almost see this all similarly as in "Welcome to menopause." If you want to strangle me I understand as my "normal" menopause was so outrageously severe and every one of my doctors responded with a blank look, no explanations, no solutions, and not even whether it would ever end. Just suck it up or die. My single best solution was to invest in a hideous number of fans. No matter where I might plop my little body in my home or at work, there is a fan within arm's reach.
In case the point was lost up above, I am really no worse off now on the AI's than I was already with normal aging menopause and lupus. I have lost approx 50 lb post BC, eat far more healthy and try my hardest to get moderate exercise - alot of walking. All seems to help.
Barbara
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Blessings - I worry too. I have been going back and forth with whether to stay on my AI. I have osteoporosis and I worry about my bones, but I had such horrid SE's with Anastrazole that I don't want to change to Tamoxafin due to possibly incurring those same side effects and possiby some new ones. Also, for me, the AI has a considerable better chance of preventing recurrence. I will stay on it for a year and try to stave off further bone deterioration with diet, supplements and exercise, but if it doesn't work, I'll have to change. :-(
I had every side effect there was on Anastrazole. I told my doctor I would take nothing at all before I would take another pill. It was horrid. Sometimes it feels like the cure is worse than the disease. But with my new one I have hardly any SE's, so I will count my blessings until the next bone density test. No pun intended. :-)
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Don't get me wrong....I can stand to lose a few pounds and I intend to....but for me that is not why I am so happy to be able to exercise regularly again. It is how it makes me feel and how much it help just about every other aspect of my life. I just feel so much better when I am able to exercize and be active. And it doesn't have to be all that vigorous or lenthly to have those effects. Even just walking 20-30 minutes at a moderate pace on a daily basis keeps me pain free and happy. If I lose a couple of pounds along the way because of it, that's just an added bonus.
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So basically what your saying is my Oncologist, Breast Surgeon and Gyno/Onco put me through a needless Hysterectomy and Oopherectomy operation? Wow! So many others just like me have had needless operations too according to what your MO say's? Insurance co's are approving such needed operations also? I beg to differ.....
Researcher Mina Bissell pursued a revolutionary idea -- that a cancer cell doesn't automatically become a tumor, but rather, depends its microenvironment for cues on how to develop.
http://www.ted.com/talks/mina_bissell_experiments_that_point_to_a_new_under standing_of_cancer.html
Sorry, can't get link to work, please google " Ted talks + Mina Bissell + Understanding" and it will pop up
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Getting back to the original topic......I am half way through the five years with minimal side effects. Like Ruth and Caryn, I am an exerciser. I do endurance events to keep myself honest. Right now, a bit worse for wear after doing my sixth Seattle-to-Portland Bicycle Classic in six years last weekend!
Having said that, it's not my joints I feel at the moment. Something about sitting on a bicycle seat for 200+ miles.
I also do a lot of walking, x-country skiing, and hiking when I get a chance. I swim if it gets hot here. But so far, no days hotter than high 70s. Upper body work is also critical, and I do weights and crunches every weekday. Boring, but fast and effective.
I could stand to lose about 12 pounds, but nothing urgent. Have been focusing on my career this year as finally back on track. Brain works just fine.....another benefit of exercise.
Exercise is so important that a number of studies are being conducted right now comparing those who exercise while taking anastrazole to those who don't. This is to get hard data on what is currently anecdotal evidence. (Dr Melinda Irwin at Yale)
As for when I take the anastrazole.....in the AM, as want to get things like that over with and on with my day. I take my aspirin before bed. Simple routine. Weights and crunches in the sweats I sleep in prior to my shower. Again simple. Walk later in the day. Cycling on the weekends (something easy the weekend coming up) and sometimes during the week. Was just reminded that I want to add a hike on Mt Rainier to my list of things to do this summer. Perhaps Labor Day weekend.
I don't think that the need to exercise has anything particular to do with taking anastrazole. At a certain point in life, you have to do it to keep your body strong and fit. Also to protect your heart and keep your brain in gear. The ability to tolerate anastrazole better is just another benefit.
Plus be able to get out there and enjoy all the wonderful things our post treatment life has to offer. - Claire
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What criteria are used to decide if you are rxed arimidex vs femara vs tamoxifen?
I have not started any hormonal treatment since I am still on chemo, but my oncologist mentioned arimidex in my future when I first met him. I am post meno.
Thaanks -
Nkb-
Arimidex and Femera are Ai's (Aromatase Inhibitors) and is used primarily for post menopausal women and Tamoxifen is an SERM- chemically, they are two different drugs-Tamoxifen is blocking the predominant source of Estrogen from the Ovary's while the Arimidex is inhibiting manufacturer through the adrenal glands and other areas of the body. Tamoxifen is for pre-menopausal women but more Oncologists are using it for post-meno as well.
Here is a link explaining it in full detail
http://www.webmd.com/breast-cancer/tamoxifen
OK-sorry again, my link will not post- google "webmd + breast cancer + Tamoxifen" and it will pop up
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Claire, your post is inspirational! I am a turtle compared to you, but hoping to increase my exercise bit by bit. My brother did the Seattle to Portland bike ride last weekend, too. Another inspiration.
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maggie-
I have contralateral breast pain too-it was there before the Arimidex and right after rad's and it it still there after stopping Arimidex-I, like you, started a few months ago; My mammo is scheduled August 7th-I do not think it is an SE of any treatment, it is something, but not that.
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My doc has me on the the AI vs Tamox because of the effacacy for post-menopausal women. I have concerns because of my bone loss, but my onco doc says there is some documentation out there that Aromisin has less bone loss than both Anastrazole, although like everything else with this disease and it's treatments there is conflicting data. I am going to try staying on it for a year and control bone loss with diet and exercise.
As I continue to read up on nutrition I am finding more and more that diet more than any other factor contributes to the onset of the disease and helps "cure" this disease more than any other factor.
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Claire_in_Seattle - my BC dx last fall saved my life in many ways. Had it not been for that, I would not have lost all this weight, or made it a priority to exercise every day no matter what.
I'm nowhere near the activity level you are, but considering that last year I was a committed couch potato, I am happy to say I'm doing 90 minute water aerobic workouts, riding my bike, and power walking.
My energy has increased a million percent, and my fibromyalgia pain has diminished considerably. I haven't felt this good in 20 years.
My MO told me that recent studies have shown that diet and exercise alone can reduce the risk of recurrence of ER+ BC by at least 23%. I'd say that was a good thing.
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Water aerobics, bike riding, and power walking? I think you're doing awesome! I have always said if it were possible for people people to feel like they would if they were eating right and exercising regularly for 24 hours, you wouldn't have to have diet pills or programs; People would just do it because you feel so much better.
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Just got back from a pedicure. What magazine did I read? "Fitness"!!! No way would I ever have picked that up in the past, because I knew I would never be one of those skinny weasel 20-something gym rats!
I've always said that medically, it's very difficult to do something just because "it's good for you."
There has to be some payoff....some benefit. That'w why there's such low compliance in some patients who take blood pressure medication. There's no immediate payoff - no immediate feeling better, like, say, taking a pain pill for pain.
The payoff from diet and exercise is definitely delayed gratification. It takes a lot of faith to believe that going out and moving my fat butt is going to make me feel better than laying in my recliner, snacking on chips, and reading a trashy novel.
I always whined when my doc told me to go out and move to make the pain from my fibromyalgia go away. I thought he was crazy. The few times I did it, I felt worse. Of course, that just confirmed my theory that the recliner, chips, and book were the best medicine!
But the BC dx got my attention like nothing else ever did before.
Now I am already stressing about the time I will be out of the pool after my exchange surgery. I don't want to lose any ground!!!
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vacationbound,
I'm not sure what you were responding to, but I don't think anybody said that at all. Surgical removal of reproductive organs certainly does reduce estrogen production in your body. I was just clarifying that on pathology reports, the % receptive for ER+ refers to the percentage of cancer cells with estrogen receptors, not the amount of estrogen your body produces.
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NKB,
Generally speaking, Tomoxiphen is used for those that are premenopausal and aromatase inhibitors for those that are post menopausal. My MO said she prescribes Anastrozole/Armindex because it has been in use the longest, so the most data is available about long term use.
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Nancy-
Your July 17th statement is a little confusing, I understand what an ER receptor measure is however the last part of your last statement:"It is based on the structure of those cells and is not affected by whether or how much estogen is available to those cells. "
The "It" you are referring to, ER staus, is directly affected by measurements of estrogen....so to calrify-
If you are ER+, your tumor cells respond to estrogen and thrive on it. By having an ooph, taking Tamoxifen and/or AI's, you are depriving the tumor cells of the estrogen they desire. Some estrogen will always be in your body, but there's less of it. Therefore there's less fuel for the cancer cells. When an estrogen molecule enters a cell and passes into the nucleus, it binds to its receptor. That causes the shape of the receptor to change. The estrogen-receptor complex binds to coactivator proteins. This causes nearby genes to become active. The active genes make molecules of messenger RNA. These guide the synthesis of specific proteins. The proteins can then influence cell behavior in different ways. How depends on the type of cell involved.
From the BCO website:
"It's also worth noting that some breast cancers that are hormone-receptor-positive can lose their receptors over time. The opposite is also true: hormone-receptor-negative cancers can gain receptors. If the breast cancer recurs in the future as advanced disease, doctors should order a repeat biopsy and retest the cancer for hormone receptors. If the cancer cells no longer have receptors, hormonal therapy is unlikely to help treat the cancer. If the cells have gained hormone receptors, however, then hormonal therapy may be helpful. "
It's the same concept as antiangiogenesis: tumors need a blood supply in order to thrive, and when the blood supply is diminished, they do not thrive as well as they would with a large blood supply.
And what Mina Bissell is stating in her talk, and I believe she is very correct, the tumor's microenvironment is very important. It's just that it is really not a revolutionary idea. The guys doing cell function analysis have known this for years (Nagourney and Weisenthal) and have gelled this idea into their drug selection technology. Please listen to her lecture, it is very important to know how the cells work in order to understand their language.
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vacationbound,
Ok, let me try this again. My original post was in response to a couple of previous posters whose comments indicated to me that they thought the high percentage of ER+ on their path reports meant that they had a high percentage of estrogen. I was only clarifying that that is not what that means on a pathology report. It means that a high percentage of the cancer cells examines have estrogen sensitive receptors. That is what I meant by the structure of those cells....that they have estrogen receptors...and those receptors exist in the same percentage regardless of how much or how little estrogen is available to them. ER status is not a measure of estrogen, it is a measure of estrogen recpeptors...two completely different things.
I agree with you completely that reducing the available estrogen deprives those cells of as much estrogen and that cancer recurrence should be confirmed with re-examination of ER status and all the rest that you said. But none of that had anything to do with my original post on this subject. I was and still am merely trying to explain what ER+ and % means on a pathology report.
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Thanks for the new thread. You're right it was getting intimidating. So far I have been on Arimidex for about a month or so. I got to get of it for 2 Weeks while I had my hysterectomy. I just started back on it yesterday, so I have a really clear line of side effect changes lately. Headaches and fatigue and joint pain are worse on the Arimidex. And the insomnia is just stupid. My onc (he's a new one because we moved to California) won't even listen to any pain problems, says I have to talk to my MD for pain management. Not sure I like this guy.
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Hello everyone,
I appreciate this thread and all the information posted. I too had begun reading the other thread and knowing I had 2 years of posts to go through was a bit overwhelming.
I've been on Tamox for 1.5 years and am expecting my onc to switch me to Arimidex next month. At my last visit he told me the test he had run to see if I was going to come out of the chemo induced menopause showed that I was not. But he wanted to do the test one more time so he did and I'll get the results in early August.
I've not had any problems with the Tamox other than the scare of having developed Uterine cancer. I was spotting for about a year and so that concerned me. The spotting has just stopped in the past month or so.
I do have some hot flashes and night sweats but they don't bother me too much. And I had them before I was on Tamox so I attributed them to being from the menopause and not from the medication.
I am a very active person and followed a very healthy diet before diagnosis. I have a bit of a "life is short; eat cake" syndrome now
that I'm trying to break myself of. Or at least break myself of eating the cake daily. 
So I have gained some weight but I also don't blame that on the meds. I hope to stay SE free on Arimidex! And follow your good advice to continue being active and be better about my eating habits.
Janice
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Not sure how I could forget about the one SE from Tamox that IS giving me issues and that is the thinning of tissue which causes painful intercourse. I've been on the thread where there are creams and such for helping but have not found anything to work for me yet (not giving up yet). My onc said this problem would get better on Arimidex???
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Nancy- Yes,
ER status is used to determine sensitivity of breast cancer lesions to tamoxifen and aromatase inhibitors. I just have issue by the way you are explaining it, that is all. Please do not take offense, but I will say that these status markers are not fixed, and various tumors can be expressed differently, i.e. one tumor being ER+ whereas another ER-, the inferences are expressed dramtically different. The ER's helix 12 domain plays a crucial role in determining interactions with coactivators and corepressors and, therefore, the respective agonist or antagonist effect of the ligand is relative; The "ERα" primary transcript gives rise to several alternatively spliced variants of unknown function.
Would like to share this also-
Youtube video "The control of Breast Stem Cells"
This animation illustrates how breast stem cells respond to steroid hormone despite the cells not having any steroid receptors. The animation illustrates the research published in Nature (Vol 465, Issue 7299, 2010) by the laboratory of Jane Visvader and Geoffrey Lindeman.
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Hello
I will just jump in with my observations: I finished my chemo in OCT 2011 and then radiation therapy at the end of Jan2012, and was started on Arimidex immediately along with fosamax. After two months, I noted a huge difference in my "bounciness" as in it was gone and I needed those 30 steps to get myself moving after any length of time being immobile. (My hips ached so badly, and I was a healthy 61 before this all started.) I mentioned this aching via email to my oncologist, who advised me to stop taking it and come in and see her. I stopped it, but was so mentally elated that I proceeded to shovel/turn over three raised bed gardens, weed the entire yard, haul mulch, and dig out bushes. In 10 days I was aching all over far more than when I had been on the arimidex, so I went back on it and canceled the onc appointment since I had not given it a true test to see if I could improve my aches while off of it.
Biggest surprise.....I haven't had any stiffness since to speak of. I also began reading "Younger Next Year for Women" by ? and Lodge, and I have tried to use the 7 principles it espoused, the first 3 concerning exercise, and I hate to exercise for excercise's sake! My Oncologist also stopped the fosamax and put me on Zometa IV every 6 months, since it has shown to be cancer-protective.
Most importantly, it appears that the arimidex is working, the spots in my lungs are shrinking with each CT scan.
By making the daily effort to eat healthy, walk/run/swim/do stairs for a total of 45" most days I have lost an easy 10# (BMI now 21), dropped my cholesterol total by almost 100 points and I don't seem to have the aches any longer. I can only hope this continues to work for me, and might help others to combat the SE they are feeling on this drug.
What was that commercial?? "A body at rest tends to stay at rest, but a body in motion tends to stay in motion"? So during commercials, I jump up and do stretches/jumping jacks/anything I can think of to move.
Best of luck and good wishes to all who have to suffer this dreadful disease and its aftermath!
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Congrats on all fronts, Linda! I find what you said fascinating, and I think related to the fact that you got stronger and took some of the pressure off your joints. Being muscled does that, and serious digging builds muscle. I also think that the Second Law of Thermodynamics applies.
Plus you get gorgeous roses!
I think I am ready to get back on a bicycle seat, but will do tomorrow, and something easy. There is a fun ride on Sunday that hits one of my favorite places to cycle, so plan on that one too.
When I started Armidex, it was 4 weeks post Taxol and the same week as radiation. I think some of the soreness was from Taxol. I was training for summer cycling events (which I did!) so getting plenty of exercise. I remember that I needed ibuprofen to get through long rides. I think that I am more in need of energy potions than prior to breast cancer. But it could be that I have learned that bonking isn't necessary, and not fun either.
Ten pounds is enough to make a difference in how your clothes fit, so hope you are enjoying that as well. Major, major congrats!
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I have found Aromasin to be much easier to take than Anastrazole. It was like night and day for me. If one doesn't work for you, try another. I started to feel better in a matter of days of coming off the Anastrazole. I went from zombie back to human being in about two weeks. Both were taken during radiaton, so if that were the case the Aromasin should have made me feel worse not better since it was taken during a longer period of radiation.There are options out there other than Anastrazole. I encourage anyone to try another before totally writing off AI's altogether.
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Good advice, mini. It is amazing how the AI's effect us so differently. It is also fortunate that we have choices. Caryn
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exbrngrl - We are fortunate. I have said often on here that I would have gone w/o any meds if Anastrazole was my only option. It was horrible. No QOL at all. Now once I get these last 2 rads out of the way, I can try to get back to some sense of normalcy!
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Linda-
Question: When you say Zometa is cancer protective, what does this mean?
Also, you mention lung spots, so your stage IV now? The Arimidex has recently shown that it combats estrogen in the lungs
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vacationbound,
I don't mean to belabor this but I think we are trying to make totally different points. The ONLY point I made is that the ER status on a pathology report is by definition relevant to and only to the cells in the sample provided and identifies the percentage of the cells sampled that have estrogen receptors, not the amount of estrogen available to those cells. Any of the rest of what you are discussing in terms of lessions, tumors, sentivity to AIs, stem cells, etc. are all different topics none of which I addressed in any way, shape, or form.
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I was on aromasin from march 4th to about 3.5 weeks ago. I initially had shoulder pain but attributed it to side effects of getting rearended last summer. However about 4.5 weeks ago I started with horrible leg pain and stiffness. I am athletic and could barely walk.
Since stopping aromasin the pain initially improved but has returned again. I am now going to try arimidex. I am hoping for the best but discouraged.
Ray -
Sorry Nancy,
I do tend to labor my efforts; It's just that the subject of cancer is so complicated-but Thank you for your clarification, very well said!
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About Zometa, good question. I had initially declined Zometa, opting for Fosamax. But when I changed oncologists, my new one was quite emphatic that recent Zometa research had shown that those on it had a significantly lower breast cancer recurrence rate, and was therefore anxious to stop my fosamax and move me over to Zometa after about a 4 week break. I was hesitant to go on it due to the possible side effects, but he was quite convinced that it was important that I change over to it, so I have. I encountered no side effects after this first infusion.
And for my lungs, during staging, immediately after I received my diagnosis, they did a CT with contrast and noted 3 spots in my lung. After my first round of AC, I had a pulmonary embolus and they found it via a second CT scan and then noted that the largest spot had diminished in size. A third CT scan 3 months later showed a new irregular mass not previously seen, and just recently my CT scan showed this mass has also diminished in size, I figure it is due to the Arimidex. Because any of these spots were under 2 cm, they were not considered mets during staging, nor were the three supraclavicular nodes that were seen on my original CT scan considered mets. Most have disappeared since the chemo, but the supraclaviculars were also separately radiated daily.
Let's just keep the faith that those lung spots will continue to disappear forever by the time I am done with the next 4 1/2 years of Arimidex.
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Linda....a close friend of mine who initially wasn't given hormonal therapy developed lesions in her lungs. They found it during pre-op for foot surgery. Anyway, she had the larger ones removed, but they couldn't get everything.
Hormonal therapy took her to NED, and she has been there for more than 10 years. BTW - she found anastrazole a lot easier to tolerate than Tamoxifen, a good thing as she needs to be on an antihormonal for the rest of her life.
She had a rough time, but at this point, leads a full life, has a great career, and is absolutely beautiful.
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Linda,
Thank you for sharing, could I ask if you have a link to the new study on Zometa lowering BC recurrence. They want me to take a bisphosphonate (Zometa) and I am not comfortable with either; I have seen many claims that it has anti-angiogenesis effects but these clinical trials are what I want to get my hands on! Zometa- the manufacturer Novartis clearly and specifically state no such claims are made that Zometa is an anti-cancer therapy drug (see website Zometa.com) -
Zometa is a bisphosphonate, Femara is an aromatase inhibitor ( like Arimidex or Aromasin). Is your concern about the bisphosphonate or the AI? Many women take both as the bisphosphonates offset bone loss from AI. Yes, I too have heard bisphosphonates may provide some protection against further bone mets. My mo thinks the jury is still out on this. Sorry that I have no studies to cite. I take Arimidex, daily, and Aredia (similar to Zometa) monthly by infusion. I have had no significant problems with either.
Caryn -
Just an FYI - if you have any issues with your pancreas, you are pretty much out of luck (like me) for any injectables. I am having to work with just diet, supplements and exercise. I'm trying it for a year. If my bone density worsens, I will have to change to Tamox. :-(
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Sorry Caryn, big typo-I changed post to read (Zometa)
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No problem! It's a wonder any of us can keep all this bc stuff straight. I recently had dinner with a friend who is a nurse. He was very impressed by my newly gained medical vocabulary!
Caryn -
Oh my gosh. I forgot to take my phone off vibrate yesterday and didn't hearthe alarm to take my meds at noon per usual. Withhout thinking I took it at 6:00pm. At 4:00am I was still wide awake! :-( I will miss a day before I do that again!
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vacationbound,
Here is what my oncologist sent me to urge me to go and get the Zometa...sorry it is so long...
"I'm basing the benefit for zometa on:
Zoledronic acid inhibits adjuvant letrozole-induced bone loss in postmenopausal women with early breast cancer.AUBrufsky A, Harker WG, Beck JT, Carroll R, Tan-Chiu E, Seidler C, Hohneker J, Lacerna L, Petrone S, Perez EASOJ Clin Oncol. 2007;25(7):829. PURPOSE: Treatment with aromatase inhibitors decreases bone mineral density (BMD) and may increase the risk of fractures in postmenopausal women with early-stage breast cancer. The addition of zoledronic acid to adjuvant letrozole therapy may protect against bone loss.
PATIENTS AND METHODS: Patients receiving adjuvant letrozole were randomly assigned to receive either upfront or delayed-start zoledronic acid (4 mg intravenously every 6 months). The delayed group received zoledronic acid when lumbar spine (LS) or total hip (TH) T score decreased to less than -2.0 or when a nontraumatic fracture occurred. The primary end point of this study was to compare the change in LS BMD at month 12 between the groups. Secondary end points included change in TH BMD and changes in serum bone turnover markers at month 12.
RESULTS: The upfront and delayed groups each included 301 patients. At month 12, LS BMD was 4.4% higher in the upfront group than in the delayed group (95% CI, 3.7% to 5.0%; P<.0001), and TH BMD was 3.3% higher (95% CI, 2.8% to 3.8%; P<.0001). In the upfront group, mean serum N-telopeptide and bone-specific alkaline phosphatase concentrations decreased by 15.1% (P<.0001) and 8.8% (P = .0006), respectively, at month 12, whereas concentrations increased significantly in the delayed group by 19.9% (P = .013) and 24.3% (P<.0001), respectively.
CONCLUSION: With 1 year of follow-up, results of the primary end point of the Zometa-Femara Adjuvant Synergy Trial (Z-FAST) indicate that upfront zoledronic acid therapy prevents bone loss in the LS in postmenopausal women receiving adjuvant letrozole for early-stage breast cancer.
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Magee-Womens Hospital, University of Pittsburgh Cancer Institute, Pittsburgh, PA 15123, USA. brufskyam@upmc.eduPMID17159193 51 TIEffective inhibition of aromatase inhibitor-associated bone loss by zoledronic acid in postmenopausal women with early breast cancer receiving adjuvant letrozole: ZO-FAST Study results.AUBundred NJ, Campbell ID, Davidson N, DeBoer RH, Eidtmann H, Monnier A, Neven P, von Minckwitz G, Miller JC, Schenk NL, Coleman RESOCancer. 2008;112(5):1001. BACKGROUND: Letrozole is safe and effective in postmenopausal women with estrogen receptor-positive early breast cancer, but long-term aromatase inhibitor use may cause bone loss and increase fracture risk. This study evaluated an immediate or delayed strategy of bone protection therapy with zoledronic acid.
METHODS: A total of 1065 patients who were receiving adjuvant letrozole were randomized to immediate-start or delayed-start zoledronic acid (4 mg intravenously biannually for 5 years). The delayed group received zoledronic acid if lumbar spine or total hip T-score decreased below -2.0 or when a nontraumatic fracture occurred. The primary endpoint was change in lumbar spine bone mineral density (BMD) at Month 12. Secondary endpoints included changes in total hip BMD, serum bone turnover markers, and safety at Month 12.
RESULTS: Lumbar spine BMD increased from baseline in the immediate arm, while it decreased from baseline indelayed-arm patients. At Month 12, the differences between the groups in lumbar spine and total hip BMD were 5.7% (P<.0001; 95% confidence intervals [CI], 5.2% to 6.1%), and 3.6% (P<.0001; 95% CI, 3.3 to 4.0%), respectively. Both regimens were well tolerated with few serious adverse events. Bone pain was higher in the immediate group, as expected, because some patients experienced acute-phase reactions after zoledronic acid infusion.
CONCLUSIONS: At 12 months, immediate zoledronic acid therapy prevented bone loss in postmenopausal women who were receiving adjuvant letrozole."
So that was what he was looking at, I guess. Hope this helps. But on second look, I don't see anything here about cancer-protective, so I guess I don't know what studies he was basing that on. Sorry!Linda
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Hi JO-my cholesteral also shot up! Never EVER had a problem-this happened only after 6 weeks, not 6 months like you.
Linda-I have to go to work but I'm going to get back with you on the Zometa-want to share something with you-their are no current studies to show how long one should use it, the initial effiacy is tested but long term use is the question....They are currently studying this
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Vacationbound,
Glad you brought up the time issue for bisphosphonates. My original mo wanted me on Aredia for 22 months. My current mo says 12 for the reasons you stated above. I know we all wish for something definitive as it's sometimes frustrating but I am glad that thinking and research continues to evolve and (hopefully) improve. Caryn -
I discussed bisphosphonates with my MO and she is a bit leary of prescibing them. Her concerns is that there is not yet enough data on their long term use and effects and since I may be on anastrozole or another AI indefinitely, she doesn't want to use them as a first line treatment for bone density loss. She feels that weight bearing exercise is just or more beneficial without the side effects and unknown long term effects of bisphosphonates. She is also going to measure my vit D uptake as part of my next lab work (in about 3 weeks).
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I bought an Elipitical machine from Academy-very cheap, $119.00, easy to assemble and my goal is to lose 40lbs! This will not only help the estrogen levels in my body decrease but the exercise is the key to losing the weight! I think the reason why we do not lose weight after treatment is because our metabolisms have changed so we do not burn as many calories as before. I can eat like a bird and not lose one pound. I'm taking Lecithin and Omega 3 to get the cholesteral down. I also take an aspirin everyday.
Linda-here is an interesting article posted by BCO on the ongoing Zometa/Bisphosphonates studies
http://www.breastcancer.org/treatment/hormonal/new_research/20101209.jsp
Here is the article from the NEJM about Bisphosphonates and long term use
http://www.nejm.org/doi/full/10.1056/NEJMp1202619
also NEJM article http://www.nejm.org/doi/full/10.1056/NEJMp1202623
If you read the New England Journals, it states that not all the bisphosphonates have the same biologic functions; the Zometa website states: ZOMETA (zoledronic acid) 4 mg/5 mL Injection is a treatment for hypercalcemia of malignancy (HCM; a condition resulting in high calcium blood levels due to cancer). ZOMETA is also used to reduce and delay bone complications due to multiple myeloma and bone metastases from solid tumors; used with anti-cancer medicines. ZOMETA is not an anti-cancer therapy. http://www.us.zometa.com/index.jsp
I know they are still trying to prove this statement but the manufacturer Novartis clearly does not state any such claims that Zometa is an anti-cancer therapy. (see above reference)
I myself have been told that I will need to start Zometa shortly and I am on the fence as well as I do not know if it is right for me, that is why I will do the research for myself and make my own best judgement relative to the scientifically proven evidence.
-I have seen many claims that it has anti-angiogenesis effects but these clinical trials are what I want to get my hands on. The Strontium I choose to take instead makes no claims about preventing angiogenesis either and in essence, does just the same thing as the drug but without the side effects. If you look at the Europe report, they really only study Zometa for it's efficacy regarding Osteoporosis-look under post-marking report section for reference to Oncology indications relative to cancer therapy-not much there; they also refer to the Flex, Horizon and FIT trials but also state that this study has a number of limitations including the relatively short length of bisphosphonate treatment in the majority of patients in the FIT and HORIZON trialshere is other half since link is being censored: docs/en_GB/document_library/EPAR_-_Assessment_Report_-_Variation/human/000336/WC500115455.pdf
So take out of it what you will, discuss it with your Oncologist but just remember that these drugs are under review. My point by posting this info is not to scare you but to help you be aware of the pros and cons relative to your treatment needs and for me, this knowledge will help me make the right informed decision regarding my treatment. Given the links I have provided, it would seem that these bisphosphonates are being looked at in regards to pharmacodynamics (i.e., response in the dose-response curve), pharmacokinetics (i.e., dose in the dose-response curve), and biological variance (i.e., shift in the dose-response curve). Pharmacodynamics deals with drug potency at one or more sites of action. Pharmacokinetics deals with the qualities of the drug that determine what the drug concentration is at its site of action. Biological variance deals with patient-specific factors that individualize expression of the dose-response relationship.
Just wanted to give you some more clarity on the subject of Bisphosphanates, and in particular, the claim that Internet media hype make stating that these/this drug has anti-angiogenesis effects: as I stated that Zometa/Novartis makes no such claim and if you look at the product sheetwww.pharma.us.novartis.com/product/pi/pdf/zometa.pdf it states down in 12.2 Pharmacodynamics that ZA does not inhibit P450 enzymes. If it does not open, try this link-http://www.us.zometa.com/patient/zometa-prescribing-information.jsp
click on the highlighted "see full prescribing information" link, the other pdf file I copied will not open for me but this will take you to it. Also read 12.3 Metabolism sectionHere is a website describing the genomes
http://www.acnp.org/g4/gn401000086/ch085.html
and also
http://en.wikipedia.org/wiki/Cytochrome_P450which means to me that if ZA does not inhibit any P450 enzyme then it does not interfere with blocking any gene disruptive behavior which means it has no type of anti-cancer mechanism. EX: Aromatase is an enzyme, we take Arimidex to block this enzyme as it is a member of the P450 superfamily, if Zometa were an enzyme inhibitor, don't you think they would label it that?
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Why does this damn website try to censor you from posting links? I do it all the time on Inspire but I also could be doing it wrong - what gives???? I am trying to post the link http://www.ema.europa.eu/docs/en_GB/document_library?EPAR_-_Assessment_Report_-_Variation/human/000336/WC500115455.pdf
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HI Ladies. I am new to this thread. I have my rx for arimidex filled and am hestitating on using it. I have decided I wil start on 8/1. Started rads today 4 weeks PFC. I really appreciate all this info posted on this thread.
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Vacationbound- I haven't had trouble posting links. If you're having a problem you might try pm'ing the mods. Caryn
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I had my 6-month followup mammo this past Monday, the 23rd and all was clear though I had a few tense hours. I get scheduled for the mammo then with my breast surgeon each time to go over the results. The radiologist wanted my right breast (the good one) to have an ultrasound as I have such dense tissue they wanted to be sure nothing was lurking in the shadows. So there was two hours between appointments that I had this on my mind. The ultrasound was fine and I am good to go for another 6 months unless I notice something before that time. It is amazing that I am living in 6-month intervals now. But.....I was much relieved. I did ask my breast surgeon if the arimidex could be causing the breast pain in my right breast that I have been experiencing and she said yes it was possible. Any time you mess with the hormones she said, it is a possibility but she thought my pain might be coming from the fibromyalgia in my right shoulder that I have suffered from since my 20's. I am now in my late 50's. Whenever I get anxious, it goes to my right shoulder. She sounded that area very thoroughly and all was fine. I did not ask her if arimidex can exaserbate fibromyalgia pain. Any thoughts on that from any of you?
Overall, I am handling the arimidex fine but have only been on it 3 months. Jo-5 you are quite an inspiration and I have to agree with you. The SE of arimidex are much easier to treat than breast cancer. I feel fortunate so far that I am handling it. Being on the move does indeed help.
Some of you really have your information together on this subject so if I start having questions, I feel this site is a good source of information. Thank you one and all.
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Hi Allagashmaggie,
I really tuned in on what you said about living in 6 month intervals. I've spent the last 9 months have multiple medical appointments every week, some time multiple appointments the same day. Yesterday was sort of a milestone for me. I had my last rehab treatment and my last weekly appointment with my radiation oncologist. I am now living on 3 week intervals which seems like a real luxury to me. I will still have a herceptin infusion every 3 weeks through November and hopeful after that I can also go on 6 month intervals. 9 months of revolving everything around what seemed like contant treatments and medical appointments was really a drag, but now to be down to once every 3 weeks feels really great.
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I have been on Arimidex about a year. No real problems with it. Sister is especially the nausea. I also have osteoporsis so also taking calcium and Vit D3. I was taking another drug for it but it is so expensive and cant afford $120 a month for one med. ONC nurse recommended getting this shot twice a year. That would be great except it is 1200 a shot. She said BCBS would cover it but of course not the entire cost. I am trying to eat more foods with calcium and staying active. Was before the dx and am after.
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I've having my vit D tested in a couple of weeks. I've been taking them with suppliments (both my multi and my calcium include D3.) Onc wants me to not take the supplements for 3-4 days prior to the blood draw so that it reflects what my body is actually getting without supplementation, so she can determine how much supplementation I need.
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I've been hearing a lot about Strontium for osteoporosis and AI bone loss. I can't take any osteo meds and probably wouldn't anyway after doing the research. Anyone out there using Strontium with their cacium and D?
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Mini-As I have posted previously either this thread or another, I am an advocate for Strontium, I take it seperate from my Power 4-(Cal, Mag, Pot, and Vit D3) my bone pain has dissipated and I no longer creak and pop crawling into bed! I have some links on Strontium but for some reason they do not post here, email me your email address and I will forward them to you.
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How often is everyone getting bone density scan?
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Msbelle, I get an anual bone density scan. My insurance won't pay for more than 1/year.
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Vacation - Thanks. I wonder why people are having trouble posting links. I've seen others complain of the same thing on other threads. I forgot you were the one with the fab 4. :-) I'm going to give Strontium a try. It can't be worse than the side effects of the biophosphates that they have approved for use. What kind do you use if you don't mind my asking? I see several on the market. I don't want any manufactured in some unregulated pill mill.
Msbelle - I've started having bone density tests once a year and will for at least the next five years of the AI.
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Once a year while on Als for me also.
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Once a year for the dexa scan for me too.
vacationbound- I'm making sure I get those 4 (cal, mag, pot, D3), and I don't seem to have much bone pain, thankfully. I think my worst SE from Arimidex is insomnia. What's the strontium do?
ruthbru, I've started with the prunes! I found I like them a lot better than I remembered.
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I've had fibromyalgia since 2000, and really, nothing has worked for it except the occasional Vicodin when I've had several sleepless nights in a row.
The first best thing I ever did was to attend a ten-week Pain Management Program offered at Kaiser in 2006. Even though my background is in medical counseling, I learned SO much about the pain mechanism in the brain!
I also learned numerous techniques for dealing with chronic pain, and the surprising amount of control we have over our perception of pain.
The second best thing I ever did for my fibromyalgia was to go on a four month elimination diet. Actually, I never had the discipline to really DO an elimination diet, but my MO referred me to the Optifast program at Kaiser, which is gluten-free. For four months I was on a medically supervised liquid diet. (We are just now introducing solid food back into the diet.)
Amazingly, my fibro pain - on a scale of 1 - 10 - turned into a 1 or a 2. It also help that I lost weight and started exercising regularly, but I noticed the lessening of the fibro pain long before I lost a significant amount of pounds, or started getting serious about exercise.
I've read in other threads that women on Arimidex and other AIs that cause severe joint pain have been helped by eliminating gluten from their diets.
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If gluten-free helps with AI, than YAHOO. I am already gluten-free and though I'm stiff in the morning (probably from osteoporosis) I don't have a lot of discomfort form my AI. Anastrazole was another story. Hurt everywhere, all the time, bones and muscles. My change to Aromasin was a big help; maybe the GF diet has something to do with it, who knows? I'm learning more and more how diet can effect our bodies. I have a friend that has MS and is a vegetarian. Someone asked her why she was a vegetarian; was if because of allergies, PETA, etc. She said that she just feels better when she doesn't eat meat, so she doesn't.
I think like Blessings mentions above, we have to get in tune with our bodies. I know last year after having to go on a strict liquid diet and re-introduce foods back into it, I found I didn't even like some of the foods I had been eating anymore, and when I did eat something that I shouldn't, the physical repurcussions were a quick reminder of why I can't eat it. Now food taste better (salt and sugar dull the taste buds) and I eat better because I want to not because I was told I need to, and consequently I feel better. My hair is not falling out, my nails are growing again, my skin is better, and I generally just feel better physically and mentally.
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Good point! Staying attuned to ones own body and eating or not eating certain foods as your own individual needs dictate is important. For myself, although I'm not a big meat eater, there are times when I really want meet. I take this as a need my body has and have not been able to satisfy it on a veg diet. A reasonable portion of organic meat takes care of it . Learning to listen to your own body is important. Caryn
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Jo, that's really good news. What do you do to keep your bones strong?
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Well, I made the decision to start today. I am going to take it in the am and see how I do. Wish me good luck!
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Good! Just take it like you would any other medication or vitamin. Swallow, and go on with your day, not thinking anymore about it. Remember that most people do just fine. It is natural that people who are having difficulties are the ones talking about it, everyone else is just out living their lives. And remember, taking anti-hormonals is the most important thing we estrogen plus ladies can do in our fight against recurrence. Almost any SE is going to be easier than cancer!! Best of luck!
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I'll second that. As much as I don't like the SE's of Arimidex and am worried about my bones, it is a far easier ''pill to swallow" than cancer.
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Lee: So true. That's why I decided to "bite the bullet" and just get it over with and get the show on the road.
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Good luck, I know u have the courage! Remember, many people have absolutely no side effects or just minor ones. Keep us posted.
Susannah -
SusannahW: Thank you and I will. I appreciate all your support.
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I just started taking it Arimidex yesterday. I had a Bileteral Mastectomy and Oopherectoy on July 9 and am recovering still from that. I just want to give everything recommended to fight this a chance. I am hoping for little SE and appreciate all the info here.
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I don't take a separate D3 supplement, but between my multi-vitamin and my calcium supplement I get 1300 IU vit D. I also walk for an hour most every day with half of that being outdoor walking, so I get both the benifit of weight bearing exercise plus the extra vit. D from being outside.
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Is arimidex as good as femara at keeping down the return of cancer?
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Yes.
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Hi everyone, I'm new to this post (glad it was started-thanks!)
Ruthbru you are definitely an inspiration when it comes to this arimidex. Thank you for sharing your success with long term Arimidex us.
I started my Arimidex a couple months ago. I usually have issues with starting new meds and was really apprehensive. My MO told me that the most common immediate side effects he hears is headache and some achiness. He advised me to do a slow start of my arimidex-one every 3 days for a week then one every other day for a week then everyday. He said doing it that way gives your body a chance to accept the new medicine. I ask my ddl who has a doctorate in pharmacy if that made sense and she said yes alot of doctors introduce long term meds that way now. I felt much better mentally not diving into it every night of the week with the slow start. Fortunately I had no problems with it so far. So if you are sitting there staring at your new AL but are afraid to start it, maybe a slow start will get you going.
Have any of you been told that any foods counteract the ALs? Pretty much the only thing I have seen so far is soy products.
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JO-5~~~how long did it take to get better after you stopped taking Arimidex? I finished Thursday the 26th.
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Deboyre: Congrats--and this is from someone who just started yesterday.
2FriedEggs: Did your doc recommend this dosage intially because you do have reactions? My doc did not suggest it, and I just took my second one yesterday.
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kjiberty I'm really not sure if my Mo just starts some of the patients this way that are "apprehensive" like I was or if he does this for everyone. When we were discussing my need to take an AL I told him that I was concerned because of SE's and because I seem to have a low tolerance to meds. He said he would slow start me which would give my body time to adjust to the medication. He told me the nurse would explain it to me out front when she gave me my prescription so I got the feeling it was pretty routine at his practice. When I ran it by my phd-pharmacist DDL she kind of chuckled and said that alot of doctors do that with different drugs that it was refered to in class as "start low, go slow". When I ask her why the chuckle she said that it was a very common intro to drugs among the geratric age groupto monitor SE's and interactions when starting a new drug, especially since they are on so many other medicines (she then very quickly covered herself with-"not that you are in that age group or anything"-lol.) But her thought was that the doctor wanted to introduce it into my blood streamand get me acclimated to it slowly since it is working to reduce my estrogen. She said in pharmacy school they learned that for some drugs doing it that way seems to minimize early side effects. But she also saidthat since some people are so leary of starting a new prescription, it is one way to get people who are concerned to actually get started on the new drug with less apprehension and monitor how it's being tolerated. She kind of equated it to the reverse of when you are stopping a medication they will often ween you from it slowly only this is introducing it slowly. Kind of made sense to me. But if you aren't a head case about it like I was, I would just stick to what your doctor told you, but I know that I have seen others on the boards who said that they were just staring at their new AL prescription afraid to start it so they may feel better about checking into a slow start. Let's hope neither of us have any side effects and how we started it will all be moot. lol
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Hi 2friedeggs,
When you say slow start, are you talking about starting a lower dosage or taking it less frequently than daily? No pharmacists in my family but it's an intriguing idea, especially if it helps to allay people's fears. Wishing you no se's!
Caryn
PS: I have been on Arimidex for 8 months. I did have some stiffness in the knees and a few odd aches and pains, which I blamed on the AI but nothing too bad and it has diminished. I do take some supplements and exercise daily. -
Exbrnxgrl I was just saying that my doctor started me on the Arimidex by having me take one pill (same dosage that I will stay on daily) every three days for a week then one every other day for a week then one everyday. It did allay my fear of getting started. Thats great that you have no major side effects-very encouraging. I don't have any that I can blame on the arimidex yet but I have only been taking it a couple months. (who is the adorable baby in your avatar?)
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Not to wish any bad side effects on you, but just know that if you do experience untolerable SE's, there are other AI options. I had to switch from one that was horrible (for me-Anastrozole) to one that has virtually no side effects except that I have to take it early in the day to keep from having sleep issues. I just wanted you to know that if one doesn't work for you another may. Good luck. :-)
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Thank you Mini1 I am so glad you were able to make the switch to one that affected you less. I was pretty encouraged when my doctor said "there are several options so don't hesitate to tell me if you are having side effects that affect your daily life". He said that sometimes his patients are helped by just taking a short break from their al followed by a slow start while others changed to a completely different AL and had alot less side effects. So it is reassuring to hear from an actual patient like you that the switch worked. I'll keep my fingers crossed that I continue to tolerate the Arimedex for a while.
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I switched from one to another with no break in between and started to feel better within a matter of days and was completely back to normal after about 10 days. Everyone is different, so maybe you'll be fine with it. Lots of people are. No reason you shouldn't be one of them. :-)
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Were any of you ever told to avoid any foods or over the counter meds or anything while taking the ALs?
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Nope.
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That's good to hear from you Ruthbru since you are our resident Arimedex expert! I just have this fear of something taking away the effectiveness. Are there any foods etc that you have avoided in general since your diagnosis like soy products etc?
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Twofriedeggs,
Thank you! The adorable baby is my 4 month old granddaughter, my first grandchild. I joke about this photo, calling it baby's first mug shot. It says, Johnny Cash, Folsom Prison 1968. My SIL is a huge music fan so she has many music group/artist onesies.
I do avoid soy in foods,in general, but am not scrupulous about it. I eat soy sauce in sushi, Chinese food etc, the occasional piece of tofu, but not everyday so I don't stress about it. BTW, the best medicine of all is my granddaughter!
Caryn -
exbrnxgrl You are so blessed-what a dollbaby! That's funny about the mugshot- I don't know-she looks like she 's going to be able to get away with murder.Maybe she'll be a famous musician then if she is wearing those onsies. I bet she is the best medicine for you. I've been trying to cut back on the soy too as thats the only thing I've seen mentioned but more in general in connection with bc rather than Als. (Well that and alcohol.)
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My doctor recommended hormone-free food before I was even diagnosed. Besides going gluten-free, I cannot eat any packaged food with more than 5 ingredients and I have to be able to recognize them. The vitamins don't count thankfully. I cheat one in a while and have a GF cookie or brownie, but I stick pretty much to hormone free, very lean meat - no deli meats or other processed meat, fruits, and veggies. It was a little hard at first. I felt like the the food on the shelf was mocking me when I went shopping, lol, but the trade off was so worth it. I feel sooooo much better. She said I may be able to add some "high quality" wheat products in the future, but I don't think I will. I feel so good now, I really don't want too. Well maybe a hanburger in an actual bun, but that's it. :-)
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Here is a link from PubMed for Arimidex (Anastrazole), and also a link for a foods list for ER+ BC patients:
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000982/#a696018-specialDietary
I switched from Femara (Letrozole) to Arimidex (Anastrazole) about a month ago and have found that I have less aching and insomnia. However, I also radically changed my diet to exclude gluten and all processed food so cannot attribute the reduced aching to the drug change alone.
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Thanks special K that's just what I was looking for only didn't want such a long list of things to avoid! lol
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The first list is the list of good stuff, the second is the list of stuff to avoid which isn't too bad. When you combine foods to avoid, bad ingredients in cleaning products, makeup, lotion, shampoo, etc. it does seem like living in a bubble is the answer sometimes! I am sure that like anything else once you get the system down it gets easier, right?
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Some of you are so good at all this changing foods and products. I see black tea on the avoid list which surprised me but was glad not to see coffee or green tea. However. I'm kind of like clara in the old Wendys commercial "where's the beef!?" Unfortunately beef,pork and bacon, my favorites, are on the avoid list. lol
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I'm am, or was I should say, a big beef eater. I still allow myself a little high-quality, hormone-free, grass fed beef, but surprisngly, I don't miss it much. I'd much rather have a ground chicken burger (lean, no skin included). Just be careful about chicken or turkey. A lot of companies grind them up skin and all which can make them higher in fat than their leaner beef counterparts. Also, many chickens have been genetically altered to have bigger breast because white meat is more popular. They also fill them up with hormones. I'm lucky that we have both an organic source and Amish birds available to us.
Also, thanks for the links above. I'm always loking for good food info. :-)
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I lost the whole thread. :-( Would someone please post the links of what's good and what to avoid? I'd be realy grateful.
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I don't eat much meat anymore and it is organic when I do however, if I slip up or "cheat" sometimes I don't beat myself up. Moderation works for me. Deprivation isn't an option:)
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At first when I had to change my diet I did feel deprived. Now I don't want most of what I can't eat. I agree with exbrmxgrl, moderation without guilt is key.
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The food recommendations are for everyone to lower recurrence risk, they don't have anything to do with Als (and, in fact, are even more important to our triple negative sisters who don't have the 'cushion' we get from taking them) . I wouldn't add supplemental soy or flax to the diet, but I don't run from the room screaming if served a dish containing them
. I don't drink alcohol very often, and then not more than a drink or two. I do add extra calcium plus vitamin D along with getting in the 2 servings of dairy. I try to eat less red meat and more fish and chicken, more fruits and veggies, less processed food. I am totally ignoring the ingredients in makeup etc. as if I worry about everything I will have a heart attack and be dead anyway. Another thing that seems to lower the recurrence risk is a daily low dose aspirin (of course, check that out with your doctor before starting). -
I have gastric issues that make it necessary for me to be careful, but if I didn't, I'd be the same way ruthbru. I allow myself small indulences where possible. Not eating packaged food makes things much easier. No labels on a banana. :-)
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What about flax seeds in food? I've eaten uncle sams cereal for years and it is full of flax seeds.
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Flax produces a pseudo estrogen effect (as does soy), there is a lot of controversy as to whether or not they make any difference to an estrogen positive woman. I just choose to err on the side of caution and not add extra to my diet. You might want to switch up your cereal and not eat it every single day....eat some oatmeal, it will lower your cholesterol.
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I still eat beef, although grass-fed, no antibiotics or hormones. Same with chicken, pasture raised free-range, no hormones or antibiotics, same with eggs. I use protein fairly sparingly and try to concentrate on organic high-fiber, low sugar fruit, and organic low-starch vegetables.
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JO-5,
You can click on black tea on the list in Special K's post (thanks K!) and it will take you to a page that explains about black tea and green tea. http://foodforbreastcancer.com/foods/black-tea I've copied it here.
I started drinking black tea as a kid. I still drink it but I've added green and red teas now. I really like the reds.
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Thanks to all you ladies for the great info as a "new" arimidex user. I can't tell you how much I appreciate this board and all your knowledge.
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That's why we are called 'The A Team'!!
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As a new member on the A team
......has anyone had loose stools? Trying to figure out if the cause is AI or herceptin. I'm suppose to start the metformin study soon as well. I may never come out of the bathroom. -
I just read somsething that has black tea on the OK list. Arghhh. Just once I'd like something to sraightforward and not contradictory to another study or list.
And MsBelle - I had the opposite issue. Of course, I had lots of other side effects, so I may not be the best person to answer your question. :-)
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msbelle - I was plagued by this through both chemo (understandable) and the first part of Herceptin alone until one of the onc nurses told me to start taking a probiotic. I started using Phillips Colon Health, because I could find it easily - only reason, about half way through H alone and it was like a miracle. I have continued taking it (finished Herceptin in Jan. '12) and I am the most regular I have been in 20 years. I did have a colonoscopy consult with a gastroenterologist recently and I specifically asked him if he had a different probiotic to recommend and he said if what I am taking works for me to stay with it. I know a few people who use FloraSmart, which you can get at Whole Foods. Yogurt is helpful but I don't eat dairy anymore and I don't think you get enough of the probiotic unless you eat about 6 a day, lol!
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I use a probiotic as well. I guess it works both ways. :-)
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Starting Anastrozole today..., wish me luck!
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Good luck! I have been on it for 8 months and have had very minor se's which have easily been managed and are almost non-existent at this point. Caryn
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Thanks Caryn! I like to hear the positive stories. Any recommendations? Vitamins? Supplements? I hope to start walking (weight bearing exercise) soon.
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I think exercise has been key for me. I work out at a gym and use a personal trainer to structure my work outs. She knows about my bc and lymphedema risk. I alternate aerobic and strength training ( weights). I also try to take the more physical options in everyday life i.e. stairs, parking far away in lots etc. As for supplements, I take D3, glucosamine, boswellia and DIM. I also get monthly Aredia infusions. I am babysitting my granddaughter today. They live in San Francisco in a walk up apartment and I'll be taking a long walk, pushing her stroller, through Golden Gate park. That's after I go to the gym this morning so I've got my exercise covered for today! Caryn
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Thanks again exbrnxgrl! Your grandaughter is adorable!!! And yes, that is indeed exercise enough!
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My worst se from Arimidex is thinning hair. Anyone else having the same problem?
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hrf~ that's frightening.., I'm just trying to get my hair back -LOLOL
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C-squared, it didn't grow back very well but since I'm on the AI, it just keeps getting thinner. MO said it the AI. I have 2 more years to go and think I will be mostly bald by then. Not good. I've tried everything and there is no improvement.
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Have you tried Nioxin? Haven't needed it for Arimidex, but that is what my hair dresser recommended for post-chemo hair growth.
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ruth~ funny I was just researching that last night. I will be trying it! I'm ready for hair (on my head).
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I am trying Biotin for hair thinning. I've several threads here that recommend it. Just started so I have no idea if it will work, but it's worth a shot. I don't like the idea of Rogaine. Too many chemicals.
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Good luck C! I'm starting arimidex soon, please keep us posted.
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I have been using Biotin for 3 years ... no help. Have been using Minoxidil for 2 years....no help. I've been to specialists - have had scalp biopsies.....nothing can be done. I use Head & Shoulders because of the zinc. The hair I have is damaged from chemo (at the root level) and my hair continues to fall out. Was told I might have some growth back when I finish Arimidex but not to expect a lot.
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You could try Nioxin for chemically treated hair. I washed my scalp with the 'chemically treated hair' formula during chemo because, as my hair stylist explained, my hair was being chemically treated from the inside out. When you are done with chemo or it quits actually falling out, then switch to the regular formula until it is the thickness you like. It would be worth a try anyway.
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Ruth~ I picked up both the cleanser and scalp treatment today..., can't wait for hair to grow back! They are both for chemically treated hair and I finished chemo May 31st so we'll see what happens! Keep your fingers crossed.
hrf~ Did you have any hair thinning prior to chemo? Does it run in your DNA at all? I'm a strong believer in genetics and unfortunately I was passed the BRCA gene. However, I am thankful that both my mother and father had full heads of thick hair! LOL
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My hair is much thinner after a year on Arimidex.
I do take Biotin, and I don't know if its helping or not. Is Nioxin a prescription or can you buy it in a store? -
Lee7~ You can buy Nioxin over-the-counter. You can find it at an Ulta store if in FL or a salon. You can also buy it online.
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Thanks! I'm going to check it out.
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Any beauty salon will carry Nioxin. They have a scalp massage as well as the shampoo and conditioner.
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C-Squared: I started Arimadex on Saturday. I am also taking Biotin and using a scalp shampoo and conditioner I bought at Ulta. I was going to buy Nioxin, but the hairdresser recommended another brand: Bios? I will keep you posted and for those of us who are new, please keep me posted on the hair growth/thinning issue. Pre-chemo, it would take up to three hours for my thick, fine hair to dry.
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Thanks, Ruthbru.
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I just went off Letrozole because of extreme joint pain and unbearable muscle pain. I'm about to try anastrozole and I'm very nervous about it. I also had to be taken off tamoxafin because I got a blood clot in my lung. I have had a bad experience with every drug and I'm almost ready to take my chances by going off them. I'm going to try anastrozole but I have read mostly terrible experiences. Is there any hope at all with these drugs? Has anyone else decided to take a risk and stop taking the pill?
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Funny thing about good nutrition is that it works for everybody, whether you have cancer, diabetes, heart conditions, or are perfectly healthy. A balanced diet that gives you both the macro and micro nutrients you need is the definition of good nutrition. All of these eat this and don't eat that diets are pretty much marketing gimmicks that feed into the "if a little is good and lot must be better" myth. And whether you track your diet by glycemic index, weight watcher points, fat grams, etc. really doesn't matter, they pretty much all get you to the same place.
I been eating a balanced diet for a long time, long before I was diagnosed with inflammatory breast cancer. The only time my diet went to hell in a hand basket was during chemo. Much of the 4 months I was in chemo, I survived on cheese, crackers, and tomato soup just because for whatever reasons those foods were the only ones that had a tolerable taste to me. Fortunately, that is no longer the case and it was pretty easy for me to get back to my usual diet once chemo was completed.
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MsBelle,
I am also on herceptin and an AI. Have not had any problems with loose stools. I would definitely suggest talking to your oncologist about this. I may be totally unrelated or it may be a side effect, but in either case, if it has been going on for a long while or continues to get worse, it should be treated.
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hrf,
I can't really tell if I have thinning hair or not, since mine is still growing in after being completely bald from chemo.
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Marge,
Do you have any sort of exercise routine? I've found that to be the best remedy for all sorts of things, whether they be side effects or just getting older. It doesn't have to be strenuous, but it does need to be consistant. I walk for about an hour everyday and do a lot of stretching and flexibility (range of motion) exercise. I might also be worthwhile to see an orthopedist. My oncolgist referred me to one recently because I had developed constant pain in one knee that was keeping me from exercising and just normal walking became difficult. Turns out I had osteoarthritis in that knee totally unrelated to cancer or any cancer treatment. He gave me a cortizone shot an it has made a world of difference. I do still get very stiff when I am still for too long but it goes away pretty quickly once I am up and moving about. I take one Aleve at night before I go to bed an then when I first get up I immediately do stuff that requires moving around (e.g feeding cats, making coffee, scooping cat boxes, emptying trask, etc.) before I sit down to my morning coffee. And throughout the day I make a point of getting up and moving around for a few minutes at least every hour or so.
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I realize that I could vary my exercise routine more, but I go for simple and effective. So crunches on an exercise ball, followed by four different routines with 10 lb free weights. I do this weekdays and work in at least one mile of walking. As I am training for a second double century cycling event, I get in a lot cycling, mostly weekends. Last Saturday's hilly 50 miler kicked my butt!
Yesterday's walk was about 3 miles to bank, market (vegetables, including fresh beans!), and meeting a friend at the wine bar with another stop for tea candles on the way home. I will need to buy beans again today as gave away most of them to my friend and wine bar manager. (Sometimes I tip with vegetables.)
I thought that I would be left with relatively thin hair, but now see that mine didn't grow in all at once. It took about another year for the hair around my temples to fill in, and I think the same was true elsewhere. Mine now needs another shot of color which I will give it later today.
I still eat meat, having elk sausage for dinner last night. YUM!!! I avoid soy, but that is about the only dietary change I have made. We have wonderful bakeries here in Seattle, so often have something yummy, or some amazing bread. I bring back fresh eggs from my cycling adventures. We have amazing salmon here too. Just broil with a bit of butter and dill.
One new starch I have discovered this year is farro. We have some grown in Eastern WA, by Bluebird, made from Emmer wheat. I cook as rice, but it takes about 70 minutes, not 45. Nutty and delish, but not cheap. YUM!!!
I need to get moving on eating up the tomatoes and raspberries, plus cook up the purple carrots and beets. No, I don't need anything special to help with the digestion. With all the veggies I eat plus exercise, things work just fine.
Plus, I now follow something that I realized earlier this year during one morning in church: we eat far too much, but don't feast nearly enough! I treasure every single day, and make sure I take every opportunity to celebrate.
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I started off with Anastroole. Horrid side effects too numerous to name. I changed to Aromisin which seemed better at first, but now i find myself very of short of breath after a single, leisurely walk and pain in my ankles that I never had prior to my DX. Oddly I have relatively little pain in my spine and hips where I do have osteoporisis. I also have balance issues that I didn't have before.There is no history of heart issues in my family.
I have researched until I am half crazy and believe that with my early stage of CA and having surgrey and radiation that I am going to try to see how I do with exercise, supplements and diet for maintenance. It seems counter-intuitive to me, but it also feels right. Talk about an oxmoron. I don't think we can prevent or "cure" cancer with diet, but I believe our substandard diets and wilingness to shove pretty much anything into our faces that tastes good (and I include myself in that demographic) regardless of what it contains that can hurt us plays a key part in things. I will work closely with my onco doc, but I feel I will do a grave diservice to myself if I don't at least give it a try. Wish me luck!
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Well, I'm back on the "A" team again. Took it for 2 months right after DX (ILC, 2 tumors) and then stopped after UMX/DIEP recovery and waiting for Oncotype scores. First one an 8 and 2nd (after long wait because they sent the wrong sample) is 16. MO concerned that 2nd score not lower (still in low range) and had one positive node, but we decided no chemo as I'm not in the young range where she would push it more and tumors were grade 1.
Had few problems with AI the first go round, so we shall see. Am taking all the great advice for Claritin, fish oil, Ibuprofen etc. and hoping for best. I do have osteo in neck and osteopenia in 2 places tested so that's a concern. Also have an unrelated anterior tibial tendonistis that makes walking painful. I mean, really? When I want to be as active as possible?
Best wishes to all of us on the AI journey.
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Taking extra right now. Was not tested so far, so will check with the MO when I meet her again next month. Fortunately I already had an RX for the AI from my BS (and had taken it before), so I can wait to meet with the MO. Not enough drs. to go around, even here in dr. intensive Philadelphia.
And since I'm on my own for a bit (obviously I can call....before she is gone for 3 week vacation)--I decided to follow other advice here and alternate the pills for the first week, then every night after.
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Question for those who experienced SE from Anastrozole..., how long did it take before you started experiencing the SE? Weeks, months? On average.
Thanks!
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Not to be a downer, but I did. About three days in. Quit after a month and switched to Aromasin. That was going well at first. I'm three months in and I'm starting to get very painful joints, shortness of breath, and lots of fatigue. I was optimistic, but it's fading fast. Sorry to be kill joy.
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Mini, sorry that you've had such a rough time with AI's. Hope that whatever you decide to do, that things improve.
C-squared, everyone has such varied reactions to AI's. Some se's come on quickly, some surface after a few months and some have no problem at all. It is so hard when there are no clear answers!
Caryn -
Thanks exbmxgrl. On the plus side, all my calcium, magnesium, D, etc., levels are good. I'm still not willing to be a guinie pig for Prolia, but it's good to know that my new diet plan is having good effects. :-)
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Off Big A for one month now after the full 5 years and started a new job, changed residences, moved countries. I am exploring and getting trained and still can't believe that I only take one pill in the a.m., for thyroid problems. Do I feel different? If I do, with so much going on, I am distracted from my health. My rhinitis stopped but that may be from the change of weather. My bad knee hasn't kicked up but I haven't been walking much. All I can say is that I had so many pains and aches like described above and dizzy. That was the worst. Am I dizzy now? No, it is better. Just a little. It is better. That's right. Kicking up my heels. Fingers crossed ladies. Am I happy I stuck with the program? You betcha.
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Mcgaffey Congrats! Wow--Lots of changes in your life!
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That's great news Mcgaffey! Celebrate!
Wishing you all health and happiness in you new endeavors!
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If any of you want some support in the exercise department, check out the 'Lets Post Our Daily Exercise' thread on the Fitness Forum.
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Great new avatar Ruthbru!
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Ruth: thank you!
C-Squared: Love your new avatar!
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C-squared Did you start your AL as planned on the first? If so have you noticed any SE's yet? I'm about 2 and 1/2 months in and haven't noticed anything that I can blame on it yet.
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That's great news 2! Very encouraging to those of us who are due to start soon.
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2Friedeggs: I started on 7/28. No S/E's so far. Fingers crossed.
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Good luck Karen! I'm right behind u, should be starting 9/1.
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Susannah: I will be rooting for you! We can do this!
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I don't mean to be the Anastrozole cheerleader but I'm glad to see people giving it a chance. I am now going on 9 months and what few, mild symptoms I had are virtually gone save for some stiffness after sitting for long periods of time and waking up. Both of those disappear in less than 5 minutes once I get moving. I don't lead a sedentary lifestyle so it's hardly a problem. I do take glucosamine, D3 and recently started Boswellia. Continued se free days to those who have started and if becomes unbearable you can just stop. Caryn
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I don't know about being a 'cheerleader', but I am certainly an 'encourager'. I came to Als with perhaps a different outlook because I was originally mis-diagnosed as triple negative (a long story of its own). When I found out I was estrogen positive, I was thrilled! Being able to take an Al cut the amount of chemo I had to do in half and gave me a 40% recurrence reduction (as opposed to the 20% that chemo gave me). It may be a crap shoot in the sense that there are no absolute guarantees no matter what we do. But Als can help us load the dice and really do improve our odds.
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Ruth: I totally agree with you, and I LOVE your positive attitude! Thank you!
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Did you start your AI after rads, or during?
Did you start right after you finished chemo or wait awhile? -
NKB: last chemo 6/28. My RO gave me the rx on 7/20. Rads started 7/25. I started the AI on 7/28 as I was too chicken before that.
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Many thanks to ruth and caryn for giving us some positive news and hope!! I'm determined to give arimidex a fair trial, but need a lot of encouragement.
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Susannah, I would keep really busy so that you don't have that much time to think about it. I finished rads on a Thursday, started Arimidex Friday, and school started Monday (I teach). I think it helped me to get started by having other things I had to focus on.
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Hang in there!!
I started Armidex same time as rads. I'm at 1 and 1/2 now on it and tolerating it okay. I do have the joint pains but find I feel better once I get going and keep moving. My biggest complaint was difficulty falling asleep but I started taking the pill in the morning and I think that schedule is better for me.
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Ruth, good advice.
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Count me among those doing fine with Arimidex. Some stiffness first thing in the morning, and after sitting too long, but certainly nothing I can't live with.
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I have been on arimidex since Febuary, I have read alot on this site and started taking claritin daily with my Arimidex just because someone said it might help aches and pains for the last 2-3 weeks and as I m sitting here I just realized my hips havent hurt for a week or so. I believe the claritin has helped!Yeah ! I will take whatever I can get!
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2Friedeggs~ I did start the Anastrozole on August 1st. It's hard to say if I am having SE or if it is residual joint pain from chemo. I feel like I have aged considerably this past year.
Have a good day all!
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Is arimidex making any of you feel anious or jittery? I am going to be starting it in a couple of weeks, and am worried about this SE.
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I have had few se's but anxiety was not one of them. I was a little anxious before I started, though! Caryn
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Ive been taking my Anastazole for almost 1 month. No major SE just some stiffness that goes away with movement. The first week my stools were a little loose but thats better. I haven't heard about taking the Claritin with it. I took that when I got the neulasta shot and it helped. May have to try that.
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I take Claritan, loratidine, daily, year round for my allergies. Maybe that's why I have had few se's.
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Wonder If Zyrtec works as well, I already take that daily for allergies, anyone tried that?
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Glad I found this topic. I have been on Arimidex for a little over a year now and the bones on the outside of my feet are so sore. Also the smaller knuckles in my fingers have swollen alot and are very tender. I know its the Arimidex. I have tried some fish oil and some other things that I have read about but nothing seems to help. The pain in my feet is getting really bad. Definately cant go barefoot anymore and even sandles hurt. By the end of the day they are so sore that I have to put the heating pad on them or soak them in warm water. They are even sore to the touch.
Just wondering if any one else has had the same experience and what, if anything, has helped.Jackie
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Turtle - I have been on Aromasin for 2 months and just told my husband this morning that my feet are sore and my fingers/knuckles hurt when I bend them. I don't know if I'm staying on my meds or not, but I would also be interested in any helpful suggestions while I'm making up my mind.
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If your feet are sore; something that may help is to wear really good, well cushioned shoes and also inserts. Walmart has those Dr. Sholls machines, where you stand on it and it tells you what insert you should get. The inserts are about $50 (a lot less than going to a foot doctor). I wear the inserts in all my walking shoes and heavier shoes, and lighter inserts with dress shoes. Also change shoes, don't wear the same ones every day and as soon as they don't feel good, get rid of them, even if the outside still looks OK.
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Ruthbru I remember seeing on one of the threads that you suggested drinking mineral water.. What was that for?
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Tonic water for leg cramps (with or without the gin).
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LOLOLOL..., ruthbru!
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Ah Ruthbru The gin with a twist of lime sounds like a good idea. Lol Thank you, I knew I saw it on several posts but couldn't think what the heck it was for.
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I think the gin will make it much more effective! Caryn
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Lime is a fruit, and therefore good for you. Along with the lime, I like to splash in a couple green olives. Olive oil is supposed to be good for you, so olives must be also, correct?
Gee, I am getting very thirsty!
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I started on Anastrozole and hated it. My bones hurt like crazy, I couldn't sleep, and I had about every side effect you can have, but I know lots of folks here take it with no problem. I switched to Aromasin which was much better for me. If one AI doesn't work for you, ask for another. I would advise that you take it early in the day. I don't know if if was just me, but I took it at bedtime because that was my most consistant time of day and also to avoid some of the gastric issues. By the 4th day I was awake all night. I changed it to mornings and that issue was resolved. I am not doing any AI now because of osteoporosis and not being able to receive any treatments for it so it doesn't work for me. Good luck.
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Thanks JO-5, I have not noticed any difference yet. Too soon to notice any weight loss, I take Simvitatin for my cholestoral 80mg, PCP will not lower the dose even though was 193. Time will tell.
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Ruth....sounding suspiciously like the "chocolate is a vegetable" logic. Really lazy today.....or at least exercise-wise. Did the minimum, but major headway on the projects I am working. Where I need to be.....
Plus ironed out a snafu in the making.
Cooking dinner now. Roasting purple and orange carrots, and making farro. Will do chard and pork chops.
More exercise tomorrow and Friday. And a 50 mile cycling event on Saturday
I somehow don't think my soreness is from Arimidex. But man, I sure hadn't used my swimming muscles in a while. - Claire
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Do you mean to tell me that chocolate is NOT a vegetable?
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It is definitely from the plant kingdom and I make sure I get my daily healthy serving:)
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Actually 1-2 ounces of dark chocolate (really dark, at least 70% cocoa) every day can lower your blood pressure....really, I am not making that up!
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That's my excuse for my daily indulgence. It seems to work too as my BP is normal and I don't take meds for it:)
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Quote from Mae West: Too much of a good thing can be wonderful!
Certainly agree with chocolate, wine, food, and what she was alluding to
Finished my dinner of pork cutlets, braised chard with pine nuts and raisins, roasted orange and purple carrots, and farro. Yum. Am not even THINKING of chocolate at the moment.
I am blissed out. (Whaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaat Anastrazole?????????????????????????????)
However, I do have a "buy one, get one free" certificate for Molly Moon's Ice Cream Parlor. (Strawberry balsamic?)
And leftovers for tomorrow when cycling club picnic. (As organizer, hoping peeps actually show.)
Off to bed in a few. - Claire
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Claire, I want you for one of my dining friends. Please move out to Philly.
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Claire: Can I come over or dinner? Every night? Thanks.
JO-5--I this she was referring to simvastitin. It's a statin drug used to lower cholesterol.
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C-Squared, I've been on Anastrozole for a month. Have started exeriencing some mild SE they last couple of weeks. Mostly some stiffness when I first get up in the morning or have been sitting for too long. I've also had a couple of mild hot flashes, also during the night. The stiffness goes away in minutes once I am up and about.
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Hello all. I just picked up my prescription for Arimidex. Been reading this thread and the other one, but wasn't sure which AI I was going to get. Now I know, LOL. Should start a week from Monday, as on Monday I will be getting my TE replaced. MO wants me to start taking it now that chemo SEs finally have mostly resolved. I was post menopausal when Dx, so hoping for managable SEs. Besides with bad knees, I AM on pain daily anyway. Thanks for being here though, in case I panic, I know where to come! Much love.
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Lot's of support here Moonflwr. Even for us newbies. Great ladies here. :-)
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It's the tradename for Zocor. I am tolerating it well so as long as I am she will keep me on it. I have been on it for many years. At my last physical my PCP asked if I was having muscle pain, I said yes, after 3 yrs of Arimidex the joint and muscle pain started, I think she was asking me because of the SE of Simvastatin. It also can cause kidney trouble.
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I also have been on Simvistatin for a few years. I am also on Amlodipine, which with Simvistatin can cause muscle pain. Just FYI..
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Had my Herceptin infusion yesterday plus appointment with MO. I am now officially NED, in remission, and a survivor. I still have another 3 months of Herceptin infusions and will be on AI indefinitely, but those are to lower the risk of recurrance rather than treat any active cancer. I'm now on an every 3 month schedule for follow up appointments with MO.
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nancyjac~ that's GREAT news!!! Time to enjoy life again!
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Nancyjac: Congrats!
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Whew! Congratulations, Nancy.
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nancyjac, Thanks for sharing your wonderful news with us. I am so happy for you
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Hi there, am new to this site. I am happy to see that you had no side effects so far. I start my Anastrozole tomorrow and have been very concerned about what to expect. I already have aches and pains so do not know if I would notice any new ones! (lol)
Has anyone taken this without having to take Zometa? My oncologist wants me to consider it, but that has even more side effects. I cannot afford to have dental problems as it is.
Thanks for any imput.
V
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Get a DEXA bone density scan for a baseline to start out with. If it is fine, you don't need to take Zometa. Make sure you get calcium in your diet, consider taking calcium plus vitamin D suppliments, get regular weight bearing exercises (light weights, walking, running, dancing etc....things that pound your bones). I have gotten a yearly DEXA while on arimidex and I have stayed in the normal range....but if I had gone down too much, with the yearly DEXA I would have known right away and I could have started Zometa or whatever at that time.
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Thanks ruthbru. That is great advice. I did start taking D3 supplemens and had a bone scan less than a year ago. Hopefully they will use that as a base. Will do walking, maybe some dancing, but cannot do the running, (mild copd). But will try anything to keep from taking more medication. V
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Nancyjac-That is wonderful news! So happy for you!
grannieval I started taking my arimedex about 3 months ago. I was scared to death. My Dr had me do a slow start to get my body acclimated to the new medicine slowly. (1 every 3 days for a week and then 1 every 2 days for a week then every day). Like you I already had a few aches and pains but I have had no SE's that I can attribute to the arimidex so I am a very happy camper. I am hoping to be like Ruthbru and take it my 5 years with minimal effects as it seems to be a pretty important part of all this .
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And eat a serving of prunes every day. They are GREAT for the bones!
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Ruth, I did buy prunes and I've added a few to my oatmeal in the morning. I like them even better than raisins.
nancyjac, great news!
Does anyone know if Zometa is better than Boniva? My onc only suggested the boniva.
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Not to mention digestion! I stew mine with a bit of water, lemon juice and lemon zest. Really perks them up.
Caryn -
Nancy ! Awesome news for you! Way to go! So happy for you!
I am fairly new to this but so glad to read some good news !
Redroan
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Ive been on Arimidex for 3 years now and while the hot flushes settled down during the first year, specifically the fuzzy head/memory issues & the aches and pains, stiffness etc have been horrible throughout. To the extent I tried to get a pill holiday last time I saw my onc & BS and got talked out of it. Tired of feeling like Im 100 instead of 46, I started lurking around reading the various alt and complimentary forums and finally decided to go visit a naturopath to see if they could help.
2 months later Im happy to say my quality of life has improved out of sight. The naturopath did a hair analysis test which showed I had a huge amount of calcium, but it was in my tissues and not in my bones. They changed me from standard calcium pills to Green calcium which is derived from a marine plant and is a liquid inside a capsule. The only other pill they introduced which I actually take is a probiotic and whether its the liquid calcium or the probiotic I dont know, but Im feeling wonderful now. The head has cleared enabling me to really get a grip back on my business and physically I have way more energy and way less stiffness and soreness. Even been able to do a few 9 hour shifts on my feet when before I was struggling badly to work 6 hours.
I have yet to see my BS or onc and will be seeing them at the end of the year, but I dont see how they could argue with the change in how I receive the calcium so i dont expect to be told to change back. Also cant see any issues with adding a probiotic as they are fairly common.
I strongly recommend anyone suffering the aches and pains to buy a bottle of calcium in capsules containing the liquid form instead of the sollid form and see if it makes a difference. If it doesnt you can always change back. BTW the naturopath also sold me a heap of other pills like zinc and magnesium, which Im not taking until i see by BS or onc and seeing as Im feeling so good Im not in a hurry to take yet more pills. Im also not sufficiently educated in all this stuff so until I know for sure those other supplements wont intefere in the performance of the arimidex, I wont take them.
Hope this helps someone, cause the change has certainly helped me. For the first time in 3 years Im not waiting for the day I can stop taking arimidex. And the thought of finishing the 5 years and being told to go another 5 doesnt give me nightmares lol.
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Linda1966~ You have given me hope. Just when I wanted to get on here and vent about the fact that my DEXA scan results came back with "thin bones" - mind you they only check the weight bearing bones -hips and lumbar (lower back) vertebrae. I have only been on Arimidex since August 1st so I know it's not a matter of the Arimidex! However, I am frightened for what's to come if I need to be on this for 5 years and started out with a poor baseline. I'm only 48.9 years old (will be 49 in November) and I, too feel like I'm 80 every time I transition from a seated to a standing position throughout the day. I work with children in school and as a therapist I need to be getting up and down from the floor -HA!
I"m aware of what helps..., weight bearing exercise, Calcium and Vit D, and I'm currently compliant with all of that. I am so greatful to you for another resource and I look forward to finding more help. Thank you again for sharing your story. It truly brings me hope.
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Linda - That's awesome to hear. I see my naturopath Friday. I only made it on the meds for 3 months. I don't know how you did it for so long. It's no wonder studies show that something like 50% of women stop taking them within 2 years. You may want to at least consider taking the magnesium. It makes the Vit D and calcium work more effectively.
I'm so glad your feeling like yourself again!
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C Squared, so glad I could give you hope. I have a bone density scan comng up next month so will be intrigued to see if theres been much deterioration since the original one 2 or 3 years ago.
Mini, the new calcium capsules have per serve 600mg Calcium, 43 mg Magnesium, 53 mcg iodione. 6.9mg sodium, 1.7mcg selenium, 3.2mg strontium & 24 mcg Boron. Have absolutely no idea what they all do but considering how im feeling they must all help the calcium get to the bones instead of the tissue. The bottle advertises that it is a unique wholefood source of calcium from an organic marine plant naturally rich in calcium, magnesium & 72 other trace minerals important for maximum calcium absorption & bone health. I put all this in cause I dont really know which is the important part, I just know that over the last 2 months my qol is way up.
Off topic, but oddly Ive had these "spells" since I was in my early 20's where I would have my arm start shaking and have to sit down really quickly (or fall down), get a heavy sensation in my head and then have to urgently go to the toilet. Underwent a whole heaps of hospital tests back then and again when they got way more frequent during chemo. Both times told it might be a mild form of epilepsy and offered pills (which I declined as they couldnt say definately that it was epilepsy )and to drink more water and add salt to my diet (which I never really did lol). I havent had a single one of the "spells" since starting to take these calcium capsules and the probiotic so my visit to the naturopath seems to have sorted that issue out as well. Happy days
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Thanks all. Being a survivor (again) feels good after being a patient for so long :-)
I've had the whole raloxifine/zometa/etc. discussion with my MO. I was on raloxifine for years and still got osteopenia and invasive breast cancer while taking it. My MO is not sold on Zometa and other bisphosphonates either. She feels there yet enough data to determine long term risk vs. benefit. She had me up my calcium and Vitamin D supplementation and increase weight bearing exercise. Having a bone density scan in October, so will evaluate if any changes are in order after that.
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Hi, I am new to this site and have been on Anastrozole for 1 week. Last night--and again this morning--I have noticed blood in my urine. Is this a common side effect?
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Hi Kim,
I haven't heard mention of that but this seems like something your doctor should check. Hope you'll give her/ him a call. Take care.
Caryn -
Shouldn't be happening, get it checked out.
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I stopped by my pharmacist's and they suggested the same--get it checked out, so I am following up with my doctor.
Thank you!
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Good job, Normandy, I was going to suggest the same! LOL
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Hi JO-5
Thanks for sharing your info with me. Yes I am a grannie! Have 4 grandchildren and 14 step grandchildren. My oncologist did do blood tests that included a vitamin D and lots of other things. I see him on the 5th of sept. and will see what is going on. He also had me start taking D3 and I do the multi's also. Took my first pill this morning!
It is wonderful that you did so well on the arimidex. I am truly encouraged! Thanks again.
Good info and advice on this site.
V
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Ok. I was supposed to start Arimidex today, forgot to take it this morning. So, question, better to wait and start tomorrow, or take it tonite and tomorrow morning , or just take every night. Any opinions?
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I took it at bedtime and it affected my sleep. I took in the a.m. until I quit it altogether.
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This is very encouraging for me. I finish radiation on Wednesday and will see my onco on Thursday. I will be starting on Arimidex or something similar. I had a bone density today and it was fine.
I had been warned about SE of radiation and for me it was so easy. My skin did get little red but I did not got tired at all. I am praying that I do not have SE from this medication. I keep really busy. I had retired and after three years I got a job in retail (Chico's). It only three days a week but it keeps me moving. I got the job and was diagnosed one week later. They were wonderful managing my schedule around radiaiton. I'll keep so busy that if I have side effect I won't even notice. Haha.
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I bought one of those 7 day pill dispensers and put it right on top of my underwear drawer. That way if I am busy and forget if I took it or not, I can just look and see if 'Monday' is empty or there is still a pill in there. The few times I've forgotten, I've taken it as soon as I realized it and then at the normal time (morning for me) the next day.
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I started Arimidex about 6 weeks ago and am also getting Zoladex injections (only 1 so far the day I started Arimidex). I was doing just great and then all of a sudden a week ago I started getting very frequent hot flashes. Can't figure out why it is starting now. I also don't know which drug is causing this (probably both). I am fighting it with gabapentin and magnesium and starting to feel a little better. Colder weather should help too. Other than that my hair is falling but I have been under stress at work and that always makes my hair fall! If it gets worse I'll do something about it. Of course the one SE I read that had been correlated with lower recurrence is joint pain and I haven't had that! Don't know if I should be sad or happy...!
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My SE's were cumulative. It started out alright but the longer I took them the worse it got. I finally had to stop. Not trying to be discouraging, just giving my personal experience; I know some people take it with minimal SE's, but for me it was horrible.
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fmaury, I had the same thing about 4 weeks into taking anastrozole. Had hot flashes, mostly during the night, for several nights running, and then they pretty much stopped. Still have one occasionally, but it is pretty minor and only lasts a couple of minutes.
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Hot flashes I could deal with. I had them before the meds, just not as intensely. It was the other SE's that broke me. It's a moot point for me now, since I found out I have osteoporosis and am not a candidate for any oral or injectable treatments.
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What other side effects??? I have been on anastrozole for 6 whole days now! Today I did some lawn mowing and vacuuming, laundry, etc. Now I am sooooo tired and quite achy. Don't know if it is the pill or the work or the combination. Any input??
V
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Just FYI, I decided to start it today in the morning, so I am now a member of this club too, oh well! Will let you all know how it goes. Didn't get my drain out for my left te, but hopefully on Thursday. Much love.
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I hurt all over, muscles and joints, at first. I have osteoporosis and I could feel every vertabrae. Also a past ankle injury became inflammed even though I hadn't done anything accident or exercise-wise to aggravate it. Then the overwhelming fatigue started; way worse than post-surgery/rads. I had serious memory issues; so bad I sat in my car one day, a car I've driven for 5 years, and couldn't remember how to adjust my mirrors; a simple toggle left or right. It took me 5 minutes of sitting and staring at the buttons before I finally remembered. I had shortness of breath, heart palpations and pupura in one of my legs. Also very bad headaches and insomnia. I told the Dr. that I couldn't take it for 5 more days let alone 5 years.
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Mini1,
WOW!!! So sorry that you had sooooo many issues with it. Did the doctor put youon something else? What did he say? I can't image having to go through that. My prayers and thoughts are with you.
V
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Is anyone finding that their pharmacy is having trouble getting Anastrazole? I just got a letter from them telling me to contact my Dr. for an alternative medication.
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Madreliz,
I wasn't able to get it through a military pharmacy. Makes sense I guess since it is for postmenopausal women. Not many of them on active duty, so not something a military pharmacy would have much demand for. I get it at the phamacy at my local supermarket. I think one time they didn't have enough on hand to fill a 90 day script so they gave me like a week's worth while they ordered and got the rest a couple of days later.
I would check out a different phamacy before I switched medication. Anastrozole is the generic for Arimidex. Some pharmacies may be unscrupulous and try to stear people to brand drugs because they have a higher profit margin.
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Hi all, for the first time, I had a nice Longgggggg talk with my Onc and he explained to me why he thinks I should be on an AI but said it was up to me.. Then we discussed which ones and why - he would rather have me on an AI and not tamoxifen.. I told him being it has almost been a year and I am willing to try one more time - I will be starting on arimidex again and praying no severe headaches this time.. He told me if they come back to get off immediately.. and will give me a month to detox if we have to change..
I have about 5 left over from the last time and it only took 4 days for the headache to appear, so am thinking of not buying the new script until those are done...
Question:ONC is definately opposed to chopping them in half and start on them gradually - says that won't work - has anyone else tried this? did it help? .. Off to bed - 4am comes early...
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Someone on this thread said they started on them every other day at first. Back a page or two. Right before I posted the first time.
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I would take them as prescribed. Taking any medication that says 'take daily' isn't going to work right unless you actually take them daily. Besides, the sooner you take them, the sooner they'll be done!
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I think Moonflwr was referring to me- I was so apprehensive about taking the arimidex after reading all the posts and because I always react to new meds. But my Onc told me he slow starts his patients-he had me slow start by taking 1 whole tablet every third day for the 1st week then 1 whole tablet every other day for the 2nd week then start with every day the 3rd week. Said it was to introduce the pills slowly so that your body could get acclimated to them . DDL who has her doctorate in Pharmacy concurred that alot of docs slow start medicines especially if there is a concern about side effects or possible interactions. Don't know if it had to do with the slow start or if I am just tolerating the arimidex so far, but I have been on them atleast 3 months now everyday since that 3rd week and am so pleasantly surprised that I have had no SE's . Even if it's bunk and the body doesn't adjust to them like my onc and DDl suggested, mentally, the slow start got me going on the pills; otherwise I would probably still be staring at a full prescription bottle if I had to just jump in and start taking them everyday for the next five years and I can't imagine that it hurt anything or he wouldn't have suggested it. My onc didn't mention anything about a 1/2 tabso I don't know about that. But it's best to follow your own Dr's method of getting on the pills . Mine also said that should I develop SE's he would have me take a 3 week break then have me slow start either the arimidex again to see how I did the 2nd go round or if the SE's were real bad he'd slow start one of the other ALs. I'm hoping I won't need a break though and that I'll be able to take them the full 5 years like Ruthbru.
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Madreliz, I hope this is not true! Anastrozole is the one for me! tumor markers normal and tumors shrining. Please dont' let it be so! I would hate to change if it is working so well.
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Redroan - There are 3 AI's. Anastrozole is not your only option. If one doesn't work, try another. Aromasin may work better for you. It was easier for me, although I had to stop taking it because of osteoporosis. Like allergy meds, some work better than others for certain people.
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Madreliz - Go to Costsco - they are cheap and they can get it..
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I have been on Arimidex since January. I was already having hot flashes and sweats due to the chemo induced memopause. Then complete hysterectomy in December. I have about 4 really hot flashes a day with sweats. Then I'll have a couple of just really hot flashes. Have to sleep with a fan at night.
I lost 20lbs right in the middle of chemo because I got so sick (3rd generation chemo) and was hospitalized due to severe nausea.
I have also suffered from joint pan and stiffness since chemo, last year. I am very stiff after setting for long periods of time (at my dest at work) and I can only walk 1 mile and my legs get very stiff and painful, hard to lift. The only thing I know to do is to keep working through it. Have to keep walking because food tastes good again, lol.
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Took my first pill... Looked at it all day trying to decide when to take it each day ... 5:30pm I guess. Why is this so hard... probably because of what happened a year ago...
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Gmafoley: Good luck!
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Kjiberty: Thanks I need alot of encouragement on this one...
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Gma, good luck, I just started on Monday. I take it in the morning.
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I think it is hard sometimes to remember or maybe to differentiate between the side effects of the medication and the side effects of the situation the medication is intended to achieve. AIs reduce the amount of estrogen in our bodies which in turn reduces the estogen available to encourage the growth of cancer cells. Hot flashes, joint aches, stiffness, osteoporosis, weight gain, etc. are all potential collateral damage from the lack of estrogen. Since AIs are prescribed primarily for post-menopausal women, this colleateral damage is also edged on by advancing age.
That's not to say that some people can't also have side effects or reactions to specific AIs as well. I would think the only benefit of the "slow start" or half dose of an AI is to determine if and miminize any allergic reaction to the medication or interaction between it and other medications. Since the effects of estrogen depletion (whether during menopause or when taking and AI) usually occur over time, I don't see how taking a lower or less frequent doses of an AI for 2 or 3 weeks would have any noticable impact on that.
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It is often the fillers used within the different generic formulations of the drugs that cause a number of the side effects. The slow start is a potential way to determine if that specific formulation may cause an individual problems, most likely not the main drug ingredient - the joint aching and hot flashes are SE of the drug itself. There are many makers of all of the class of AI drugs. One generic version of Anastrazole may cause headache and nausea, but another may not. Those who are having problems with their prescribed drug may want to try another maker to see if their SE are not as severe. If you find one that you tolerate better than another your MO can write the prescription as "do not substitute" with the name of that manufacturer on the prescription itself.
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I agree with Special K. I had another Rx that I had filled and noticed that the pharmacy had changed to another generic version of the drug. The Rx did not work at all. I had to tell them that if they were going to keep using that drug, I would have to change pharmacies. I must not have been the only one because the next month they changed back.
I also just read that Anastrozole is on the list of most frequently counterfeited drugs. Nice, eh? Like we don't have enough to worry about.
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Hi everyone~ i am a newbee on this thread. was on June & July 2011 sites. I have been taking Tamox since Feb. 2012 when i finished rads. this past 2 wks have been a rollercoaster for me. went for routine blood wrk and my AST & ALT liver #'s were elevated. primary didn't think too much of it. went for 3 mo. with Onc. and she freaked out. had blood work taken only 2wks since 1st blood wrk and numbers are up more. Then went thru a CT scan of liver, showed a spot, I FREAKED OUT!!! CT on Monday, MRI on Friday same wk. Got results Monday, says all normal. Going to Onc. at 11am to see what to do next. She had me stop taking Tamox the day i saw her. Been told that Tamox can mess with your liver??? Has anyone heard of this??? I'm only 42, so don't know what to do next. Try a different drug or have my ovaries removed??? Need your advice!!! THANK YOU!!!
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I have noticed that I am gaining some weight back even though I am still watching my intake. I kept the weight off for almost a year but after being on the Arimidex (which my script is actually Anestrozole) I seem to be developing belly fat. That is very frustrating, seems like it just really popped up a month ago after being on the An since January.
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Hi julee,
Acording to the NIH, liver damage from Tamoxifin is possible, but rare.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1442108/?page=1
hwhranch,
According to my MO, the weight gain is due to depletion of estrogen (the purpose of Anastrazole) not the drug itself.
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Julie, I dont know if this will help, but I was your age when dx, but with a lower staging and due to blood clots during chemo, tamox was not on the cards for me. Chemo put me in chemopause and I was given a zoladex injection once a month and arimidex. I got to stop the zoladex when they believed I was post menopausal. They were right, the combination made menopause permanent for me.
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Jo-5 - I don't know why they wouldn't consider it. If you eat to little, your body pulls nitrients from your bones, muscles and organs because it thinks you're starving. Could be the same thing. Also, it messes with your hormones in general. There's an association with birth control and weight gain, why not AI's and Tamox?
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You are on to something Jo-5. My ONC told me fat produces "super estrogen" and also stores estrogen. Told me to get my BMI as low as I could. I am trying so hard to loose this extra fluff!!
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I have been on Arimidix since end of June 2012 and about once every two to three weeks I feel like I am pregnant. Breast tenderness, bloating, extreme fatigue and two day migraines. It's as if I am a hormonal overdrive. All very odd since I had a complete hysterectomy (overly removal) in 2007. I am 25 pounds over weight. Any thoughts or advice? Thank you.
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That is very weird that it is up and down like that....still adjusting maybe?
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I am only on this stuff for about a week. So far so good. Much love
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So, I've been on anastrozole for almost 2 months now. At this point, I really don't know how to tell the difference between side effects of anastrozole, side effects of having less estrogen, latent side effects of chemo, or stuff that isn't realated to any of that. I guess in the end it doesn't really matter what is causing it until and unless it gets to the point where the side effect outweighs the benefit of whatever is causing it and I don't think I to that point, at least not yet.
The thing I find weird is that just about all of my side effects happen only at night. I can understand the general soreness and achiness because that seems to be directly related to lying down and lack of movement. But the soreness is starting to wake me up during the night as well as frequent urination, but only at night. That actually worked out ok because the movement from getting up and going to the bathroom relieved the achiness and then I could go right back to sleep. But now I'm getting headaches, heartburn, and weird dreams. It doesn't help that my husband has a bad case of bronchitiis right now and his hacking during the night wakes me up as well.
I don't get the soreness, achiness, headaches, and heartburn at all during the day. But it is getting to the point where I'm getting tired, sleepy, and cranky during the day just from the lack of quality sleep at night. I've never had a problem sleeping my whole life and have always been a very heavy and solid sleeper. Even with all of this going on during the night, I can still pretty much go back to sleep without much of a problem, but all of this stuff is waking me up so many times during the night that the quality as well of quantity of sleep is being affected. I don't know at this point whether I should just start taking sleeping pills to try to sleep through all of the side effects or if I should try to address each side effect separately and find ways to eliminate or at least reduce the impact of them on my sleep. I'm already brain fogged still from chemo brain, so I don't want to add any drugs that may affect mental funtioning. Any suggestions?
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Nancyjac - I can just share my experience. Anastrozole was a disaster from the start. The Aromasin was cumulative. I did have radiation but no chemo. I knew the Anastrazole was the culprit there because within days of stopping it I began to feel better. The Aromasin took longer, but in the end I simply couldn't function with any QOL. I gave it two months before stopping and most of the side effects are gone with the exception of some lingering bone and joint pain.
I don't mean to be a downer, but I believe in sharing the bad and good so people don't feel like they are the only one if they aren't having a good experience.
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I've been on Arimidex for 4 months. The first 2 months were like going through menopause again...hot flashes and sleep problems. Then those problems decreased and are almost gone. Joint pain is present after sitting or sleeping a few hours, but some gentle stretching and exercise takes care of it. The one thing that is driving me crazy is the growth of facial hair. The hair on my head has finally re-grown to a couple of inches in length, but that growth was accompanied by facial hair...thick white growth. This seems like a minor problem considering the benefits of the drug, but it is almost as bad as the loss of my hair a few months ago. At least I could wear a wig and feel pretty. I haven't heard anyone else talk about this. Is there a solution? I don't want to remove it by any method that would cause dark re-growth.
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Thanks for the info Mini and Pat. I'm hoping these problems will decrease. I did have a few hot flashes (and always during the night) but they weren't bad and just lasted a few minutes....just enough to wake me up but could go right back to sleep. I have the same situation as you Pat re the joint pain. It's fine after just a couple of minutes of stretching or walking. It's not that I mind the side effects that I am having so much, it's that they are waking me up too much and so I'm tired and cranky doing the day and that's what is getting to me.
Re the facial hair....I had that before chemo so for me it was the only benefit to losing all my hair with chemo. It is coming back along with my head hair, but I haven't really notice that is is any worse since starting on Anastrozole. There really isn't anything (other than chemo or laser treatment, and even those are temporary) that is going to prevent regrowth, so you might as well remove it by whatever means is most convenient and comfortable for you because it is going to regrow.
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Hello ladies, I'm joining your thread today. Saw my Onc yesterday and came home with an Arimidex Rx. I'm hoping I'll have a positive experience, like a friend of mine has had. She's taken it for 9 mos with no problems. Tamoxifen, Femara and Aromasin have all had ugly SE's for me, so this is my last stand - so to speak - after a 6 week Rx vacation. My Onc told me to give it a try, if it works - fine, if not, I get to pick which drug was the least crappy, because they are all crappy. His words exactly and why I love him. He's not comfortable with me being on nothing with my cancer, he said some folks can only take a pill every other day and maybe that will be me. Not the optimum solution, but better than nothing at all. I appreciate the time everyone has taken to relate their experiences so far.
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phxsunshine - I am kinda in the same boat. Been on arimidex for a week..Tried all three of the AIs and back for a second try after a year off. Just realize, it is probably not the med - its the lack of estrogen that causes the SEs.. That is what my onc and many ladies on these boards have told me... The key to this is to keep on moving.. Don't be a couch potato... I have a full time job sitting in front of the computer... not a good thing for this process but it is the only way I can still have a roof over my head.. Can we work this through together?
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I started tearing up over the tv! SE! LOL! Not to mention a weird dream. But, I went through the same during menopause, so not bad. Much love.
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Pat, is the facial hair mostly on the sides of your face? Thick but fine hair extending from mid cheek to the hairline? I and most of the ladies ive known who have had chemo had what we call fluff grow there in the first 6 months or so after chemo, and it gradually disappeared after that. I figured it rubbed off on our pillows while we were sleeping.
Be careful of hair removal methods if you decide to go that route, I personally found my skin was too easily burnt by the chemicals and it took 2 years before my skin returned to normal so that I could use wax or dilapitory cream on my upper lip without gaining what felt like 3rd degree burns.
Its not fair, when youve lost all your hair to chemo, you should be able to have the head hair, eyebrows and eyelashes return and the rest stay away for good. What a nice bonus that would be lol.
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I got one of those personal shavers. If it is 'post chemo' fuzz; it will quit growing like that after awhile.
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Pat: I have had to pluck my chin hairs 3 x's this week! HOw annoying. The hair on my head is growing like a weed. Hooray! HOt flashes 2-3 x's night. Joints a little achey. Other than that, so far so good after 5 weeks. Keeping my fingers crossed....
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GmaFoley, I'd be honored to work through this together! I have no other health issues, I work out, do yoga and am working with a Naturopathic Oncologist to help mitigate the SE's, but one by one, they got too intense. They thought I had COPD from radiation, nope, it was the Tamoxifen. I thought I was having a heart attack, nope it was the Femara. The Aromasin made me feel batshit crazy, like my head had floated off my shoulders and my brain had floated away. My husband and son were afraid to leave me alone, really weird. 6 weeks off and I felt like myself again, jumped at the chance and just got back from 2 awesome weeks in Poland. My Onc told me to ease into taking it, so I'm going to do just that and hoping I have a winner in Arimidex. I will share with everybody that my Naturopath has me taking Osteo-K to help with bone loss. It is a natural alternative to Boniva, etc. Cheapest when ordered directly from the manufacuter's website. I had bad pain on Femara and she said that pain is your body dumping collagen and getting you ready for osteopenia and osteoporosis. Nice.
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I start taking Arimidex tomorrow. I'm still extremely stiff from chemo (Taxol), so I'm worried about how this will make me feel. I already have terrible hot flashes and night sweats, so who knows what they'll be like as I take the Arimidex. I just finished radiation last week. It would be great to have more time off, but I know that's not possible. Five years of Arimidex. Hopefully it will be easy. It will be nice to share the journey with all of you.
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fedfan - it is up to you when you need to start - a year ago I felt the same way and only had bad problems with the AI's - my MO took me off for a total of 9 months because he tried all three of them too close together... Now I am trying one more time... almost done with my first week and the SE I had a year ago isn't there....
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Gmafoley & fedfan: good luck with your AI's. I hope you have minimal S/E's.
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Hi All...I'm new to this thread. I have a question for anyone who migh have some info on this. This morning, I had some scant vaginal bleeding and some mild cramping/low back pain. Has any one else experienced this? I called the MO on call at my clinic, who said that I need to have an edometrial biopsy and have my estrodial levels re-checked. I have been post men. about 5 years and on arimidex for 5 months or so. I would love some insight to this.
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Annie: No I have not experienced this, but am anxious to hear what's going on.
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Does anyone get anxiety attacks?? I keep getting chest pains - mainly in the sternum and shoulder blade when this happens... Its not the heart - is what I have been told in the past... I haven't had one in years, now they are back with a vengence...
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I no longer take it, but when I did I had them. I also seemed to operate in two modes - crying or ripping off your face angry.
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GmaFoley, I have had only one full blown anxiety attack in my life, waiting for the results of my Oncotype test to come back. They were delayed because my first dumbass Onc (I fired her BTW and my breast surgeon doesn't send patients to her anymore) went on vacation without telling me or allowing one of her fellow Docs to relay the news.( I just figured it was bad news and they were figuring out a game plan and I would have been bald for my daughter's wedding.) The ER knocked me out with Ativan. Since then, I get the start of them from time to time. I get an electric jolt panic feeling in my gut/solar plexus, sometimes I wake up out of a sound sleep with that feeling. I take some Xanax, as little as possible, starting with .25 mg - I use a pill cutter. Could be the arimidex screwing with your body chemistry maybe?
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JO, did you take Xanax regularly and for how long? Or just as needed? I'm really trying to figure this out so I can live with the Arimidex or something. Thanks for posting.
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Jo, thanks for the idea but xanax knocks me on my butt. A quarter of the smallest tablet and I'm out for at least 24 hours... I have a computer job I need to stay awake for... I will be talking on the phone to my ONCs office.. I had 12 hot flashes today, where I had to strip and turn on the fan... Not a good picture, I know... but trying to do this... I just want to cry....
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Well, the MO has tracked me down! I see her tomorrow morning, and I'm SURE I'll come home with instructions to start the Anastrozole!!! I've had it in my medicine chest for almost 9 months!!!
When I joined the Optifast program last March, she gave me a reprieve on taking the Anastrozole. (Had a BMX with TEs in December 2011....at first, she let me recover from the surgery, then when she found out I was going into the weight loss program, she was THRILLED and said to wait on the AI. Something about needing to tell where any SEs were coming from.)
So I've lost 54 pounds so far (and 63 inches), and have ten pounds to go to meet my goal. (I'm 5'5", currently at 150, want to be 140 pounds.) I just had my exchange surgery, so still have a few nights that need Norco or Valium.
The biggest change is in my overall health. I've gone off ALL my meds....and my blood pressure, blood sugar, cholesterol, and kidney function are all totally normal!
My fibromyalgia has improved SO much, thanks to a gluten-free diet, and daily exercise. (I'm frustrated right now because my PS is not releasing me to go back to exercising for two more weeks.)
So naturally, I'm reluctant for any of that to change. But over the months I've come to realize 1)I won't know until I try; 2) Yes, the SEs are easier to treat than a recurrence; and 3) Maybe I'll be one of those women who have little or no SEs!!!
I'm just hoping the changes I've made in my body so far will go a long ways towards staving off the worst of the SEs. And I'm going to ask the MO if I can start "low and slow!"
Wish me luck......
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Blessings: WOWOWOWOWOW! You are an inspiration. Congrats on your weight loss. I have 25 more to go; I've lost 25 since last October. I finish radiation this Friday and hope to start back at WW in a couple of weeks. Again, congrats on your efforts--they're paying off.
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Blessing, you will do well!!!
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Vacationbound, have you discussed using Fareston with your MO? It is the alternative to Tamox but for pre or post Menapausal. It does not have the CYP ingredient and much easier to tolerate. Now that you had a hysterectomy, you dont have to worry about he end cancer SE. I tried Tamox and had horrible SE but when I took Fareston I felt GREAT! Its just expensive (no generic form). The Fareston industry has patient assistance, they send you a book of $50 coupons to help you pay each month. Hope that helps you and to all that are reading.
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kjiberty - Thanks, Darlin, but YOU are the inspiration. All I had to do was stick to a diet. I didn't have to go through chemo or rads at the same time. Anastrozole will be my only BC treatment, so I want to give it the best shot I've got. Congrats on the last rads this Friday...will you celebrate?
Thanks, ruthbru! I've had a chance over the past 9 months to hear myself whine incessantly about what MIGHT be, and I sound like a real weenie.
So tomorrow - I'm going in to the MO's office with a positive attitude! -
Here is a way to look at it.....a person MIGHT or MIGHT NOT have any given SE with anti-hormonals, but we know FOR SURE that we have had cancer, and, therefore, FOR SURE run the risk of recurrence. The risk reduction anti-hormonals give us is huge (40% for me), and adding arimidex to your exercise and weight loss (both of which are really important) will give you wonderful odds of never having to deal with this ever again.
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Ruthbru.. Your a wonderful person to have on this board, you sure do make people feel better about what their doing and choices may or may not have made. Your an inspiration and I am very glad your here!
Wishing you good health my friend!
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Well Ladies, here I go again... Talked about the SEs I've been having with the ONC's nurse - she relayed the message and ONC left a message back that said, "obviously this isn't the route to take with you. Give it 6 weeks and we will discuss options in the office." end quote... What options is he talking about?
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GMAFoley, sorry for all the SE with each med.. I have the same problem. The only one that worked for me was Fareston. Felt a little funny at first but then I felt GREAT, not one bit of pain. I went off of it only because of the fear of End Cancer SE. So, until I have a hysterectomy, I will be on Arimedex, god help me! Good luck
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Thanks Jo, I've been taking Xanax off and on over the past 1 1/2 years. I've had a lot of crazy stuff happen in that time frame, that I have absolutley no control over, mostly 2 horrible deaths of people I loved within 5 weeks of each other, is what started it. This arimidex is making me feel just plain crazy, almost the same as the aromasin did. I talked with a gal at yoga today who I knew had had BC. She's on Arimidex and is taking Trazadone to help her stay on it. She had very similar symptoms to what I am experiencing now. She has genetic cancer and has to be on something. GmaFoley, I'm sorry you are experiencing the bad SE's too. I can hardly stand myself today, I just want to crawl out of my skin. I got up and walked 3 miles before the sun came up and went to yoga thinking all that would help me feel better, but it hasn't. Hoping my Onc calls back with some sort of remedy to try because I am about to throw in the towel.
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So - met with the MO this morning, convinced that in addition to making me start the Anastrozole (finally!) she was going to make me take one of the bisphonates. At least that's what she said last December. (I've had osteopenia for five years, which has been stable.)
But the morning, she examined me, answered all my questions, and all she did was tell me to start taking the Anastrozole. I asked about further testing, and she said bloodwork every 3 months, as well as an exam every 3 months. No SEs? I can go to 6 month intervals.
As for other meds, she said I could take fish oil, calcium, and Vitamin D, but NO multi-vitamins because recent studies have shown that anti-oxidants can actually cause growth in cancer cells.
DH and I got out the door, when I realized she hadn't mentioned anything about the bone-builders!!!! I wanted to yell "RUN!" in case she suddenly remembered and tried to stop me from leaving.
Then I got to thinking that perhaps the weight loss and exercise made it less crucial that I take them?
Who knows. I take my first Anastrozole tonight.
In any case, I love this doctor...she's the Chief of the Oncology Department...young, energetic, a walking encyclopedia of current developments, and actively involved in research. Plus, she's funny.
She said that she has several patients who keep accusing her of not giving them the "real" drug, because they have no side effects! They think it's just Kaiser's way of using a cheaper, "fake" AI, and because they have no symptoms, it must not be working.
I told her how much I had learned being here on BCO (this is the only Internet site she lets me visit
) and she said to PLEASE promise her that if I had a good experience on Anastrozole - and she was sure I would, I would come here and write about it. She said that more women needed to encourage others that not everyone experiences all the bad stuff.I asked the best time to take it, and she said "Whenever you think you'll remember it." She said that if it was Tamoxifen, most women take it at night in case of possible nausea, but no one has reported that with Anastrozole.
She said to keep a log of any symptoms or concerns I might have, and to email her right away if I had questions.
I'm feeling MUCH better about this whole experience.
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Thank you very much for the compliment B123!
Well, today I hit a milestone.... I took the last pill of my 5 years of Arimidex. So I guess that makes me a retired member of the A Team. I will still come around and do some cheerleading; because I really do think it is so important, and I want us all to be around for a long, long time!
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Blessings, your onc sounds awesome! It's good to get a good one!
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Forgot to mention some interesting stats: after my BMX, my risk of recurrence was 1% - 2%.
Diet and exercise brought that down another 23%, so now it's 0.77%.
The Anastrozole will further reduce my risk by 50%, so now I have a possible risk of recurrence of 0.385%.
The MO just smiled and said she wanted to get as close to ZERO as possible.
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Blessings, I've been on Arimidex for almost 2 months now. The only thing I noticed was the first 2 weeks or so, I was dizzy and tired. It cleared up, and I notice nothing out of the ordinary yet. Hopefully, I won't. My MO said most of her patients have no SE's. I hope I'm one. :-) I do take Salmon Oil, Calcium, and I do take Centrum Silver, but I may ask her about that. Good luck with the AI!
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Yikes, I never heard that about multi-vitamins, I will have to check that out too, as I always have taken them.
Blessings, what I did to remember to take it was, I bought one of those 7 day pill dispensers and put it right on top of my underwear drawer. So every morning, there it would be. And on some of those crazy mornings that I couldn't remember if I took it or not, I could just look at the dispenser and see if the pill for 'Wednesday' was still in there or not.
Zero sounds fantastic!
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How do you know your percentages for each thing you take or do? I could never figure that out??
I want to let all know, I did break down and try the Claritin (store brand) antihistimine as you said and took half the pill. I feel like a different person. I woke up this morning with no back pain and barely pain in my feet and instead of feeling like I was 90, I felt young again! I canceled my hysterectomy for now because I can now stay on the Arimidex and not suffer. Just have to watch for bone loss, I already have osteopenia!!!
I dont know why it works, but thank god for all of you. Despite what we are all going through.. its amazing to see how we, as strangers, can help each other so much on this site. Your all amazing and I only hope I can help you all the same way.
Blessings to all of you.. B
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Ruthbru, congratulations!! So happy for you and thank you for being so positive and a cheerleader on here. I hope you dont go away now, but I understand if you do.. you deserve to move on and not look back!! THANK YOU!
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Ruthbru - CONGRATS!!! I'm very happy you made it through!
My Onc Nutritionist said the new guidelines state that "Overuse" of supplements can cause the cancers to grow - She told me multis are ok unless they have something over 100% of the daily requirement - an example is the supplement my eye doctor wanted me to take for my dry eye where one of the ingredients was 200% over daily requirement - I got a definite NO from her and my RO.
I'm up to 12% without Arimidex... I really feed sad right now..
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Gma, I can't remember, but have you tried the other anti-hormonals? Fermara etc.
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Yes Ruthbru, this was going to be my second time trying. First time was 9 months ago and had reactions with all three of them. I think the problem is more the symptoms of "lack of estrogen" and my concern was if that is the end result, how do I survive? My Onc saw me and says - you can't survive 5 years like this and with all my other drug sensitivities, he doesn't want to add drug upon drug... Basically, I have 6 weeks to clear my system then whatever the "next step" is... I have no clue - I only have my post menonpausal ovaries in me, no uterus.. I am just really mad that my friends can take this with no reactions and here I am with every reaction in the book....What's up with that! NOT FAIR.... ok got that off my chest - My DH always says it is what it is - then he told me yesterday hunny if the cure is worse than the cause - why are you doing this???
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what about tamoxifin?
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He mentioned it 9 months ago then talked arimidex retry instead - I think though - it still depletes the estrogen and my body doesn't seem to like that at all - I wish there was a way that we could deplete the estrogen but not completely....
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Thanks Jo, I am still waiting to hear from my Onc's office. They have never not called back within 2 days and I have called twice. I'm stopping until I hear from them. Xanax did not help me yesterday, I just felt plain crazy all day. That is living hell in my book. Didn't take any Arimidex yesterday and I could feel it lessen as evening came on and was able to sleep by myself. This morning I feel like me again and look like me again, more with each passing hour. Here's a thought my husband and I talked about. That we all get the same dosage - a one size fits all. I don't have much body fat left on me. Since the BC, I have cleaned up my diet like crazy to be healthy and ended up losing weight - I was not heavy to begin with. Since the body makes estrogen from fat stores and I don't have much, could that have something to do with why some of us don't tolerate this stuff well? I have no clue or any basis in fact for this idea, just wondering if anybody else has the same situation and can sound off on it?
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Thank you Jo, Im so relieved too! You mention your stomach as well?? Does Claritin help with that too? I took half the tab yesterday and my stomach is bothering me today??
GMA, I have also had a hard time with meds and Fareston was the only one that I did really well on. Its a bit expensive but if it works!!? I hope that helps you. Good luck and stay strong.
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After a lumpectomy with followup radiation (no chemo) and a 1 cm IDC tumor with no lymph node involvement, it was advised at initial oncology consult in 2010 that I did not need chemotherapy, but would benefit by taking an AI. I was elated not to have to take chemotherapy and looked forward to taking the AI pill each day.
I had initial severe side effects with Femara (severe depths of depression and bad aches/pains) and was switched to Arimidex. The "symptom" side effect profile for me on Arimidex is tolerable IF it is helps. Overall, I'd say I feel like I'm 80 years old with depression (as a side effect from the AIs). I get aches and pains in the morning, and do notice my knees in partaicular seem to be weak or achy when I'm trying to get up from a half-kneeling position. I suffer from moderate-depression despite antidepressants, but I was depressed before (just not this much). Overall, however, if it's going to help, I'll take it. HOWEVER, I have a chronic illness (15 years of back-to-back chronic refractory migraines) in addition to the moderate-severe depression, and since I'm "only" 55 years old, it has really stifled my life. I'm rarely well enough or motivated enough to leave the home and I sit around all day. I get a good physical every year, but I "feel" like an old lady. What kind of life is that? I'm surprised my husband puts up with it.
My main concern is my next DEXA scan coming up next month. I'm afraid I'll have poor results on the scan. The pre-medication DEXA scan showed slight osteopenia in one joint. My knees are so achy/weak at times, however, that I'm afraid if I keep up with Arimidex I'll end up severe osteoporosis.
I'm also concerned about any effects the AIs may have on our *heart*. I've had a complete hysterectomy years ago, and with the addition of Arimidex, I'm also afraid I'll be at much higher risk for heart disease. My good cholesterol is great, but my overall cholesterol is 220. I get very little exercise because I suffer from a chronic illness together with the depression.
I don't want to take the AI if it's not *really* helping me. Both my famiy physician and oncologist nurse practitioner have always said it *does* help. However, on the "stat sheet" I received 2 years ago from my oncologist, it stated that adding in the AI only added (??) 2 more additional women out of 100 without recurrence after 10 years as compared to radiation only.
In other words, am I taking the AI for nothing and putting myself at greater risk for serious problems? I'll plan on asking again in much more pointed detail at my next visit (or before with a phone call), but I'd like the opinions of some of my fellow sisters here. Thank you!
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Gma, tamoxifin works in a completely different way, so I would think it would be worth a try anyway. Frustrating!
JO, maybe we will have to start a 'Graduated' thread. I've always felt like myself..... maybe I will start feeling like Angelina Jole or Nicole Kidman
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Had my last chemo treatment this morning. I am pleased to say I'm PFC! YAHOO. Dr. scheduled my for a bone density scan next Weds as had last one done in May 2010 and he wanted baseline info. prior to prescribing hormonal therapy. As I am post menopausal, he indicated he wanted to try me on Arimidex first. He stated it had the best trial record for less cancer re-occurrence and reduced risk of spread to other areas of body. I told him of my concerns with SE, specifically the bone thinning and bone, joint pain. So he scheduled the bone density scan and I indicated I had read on this wonderful site that taking Claritan, the 24 hr allergy pill, would help alleviate joint pain. He agreed. So if bone scan comes back good, will probably start Arimidex first of October.
Question for the group-- as a post menopausal women who experienced severe hot flashes at that time (10 years ago), will I have to face that again? I'm 5'9" tall, weight 160#, so I feel I don't carry a lot of extra fat that could produce estrogen and having gone through menopause over a decade ago, wouldn't I not have many SE from an anti-estrogen pill? Wondering how this all works.
Also wondering when is best time to take medication, morning or evening. I've read of some having trouble sleeping or staying asleep. Is the morning better? And, Blessings20 how do you determine your percentages?
Concerned about the multi-vitamin. Had not seen that info. before. Will ask Dr. He recommended today that I take 2000 mg D3 daily in addition to the 1200 mg calcium which has 800 IU of vitamin D with it that I currently take daily. I also take 1000 mg fish oil, and a couple of fiber tabs daily for regularity. All together with a multi. Quite a supplement regiment.
Appreciate everyone's responses. Thanks!
Congrats to Ruth! Enjoyed reading your posts and learning your how your journey has gone. Best to you!
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Sherry, congratulations on being done with chemo. The very creepiest part of things for me anyway! Everybody is different. Take it when you want to, and if that keeps you up (or puts you to sleep), try a different time.
I decided I am not going to worry about a multiple vitamin, I think it is when you take mega doses that you can get in trouble. Definitely take the extra calcium with the vitamin D and also try to get a lot of healthy vitamins through fruit and veggies and calcium through dairy products and (my favorite pitch) PRUNES!
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Im just wondering... I see that people are able to take their Oncotype score and figure out percentages of reduction with each thing they do or take? How do you do that? I am a 13, I did Rads, and take Arimidex, what are my % and odds?
Also, I am on the Arimidex 2 weeks now, started half tab Claritin the other day. My stomach has been turning.. should I be concerned?? Im taking Pepto and Probiotics to calm things down but a little worried.. Is this a norm SE?
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What ever the % they gave you with your oncotype score, that % is what chance you have in getting it - without times that by 2, for example my oncotype was 8 but my % was 6% - that means that with taking an AI - you take 100 women just like me and 6 of them will have a recurrance of cancer... without an AI 12 women have a chance of having a recurrance.. Hope that makes sense..
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I just looked and it said 9% so How do I know what percentage each thing I have down counts toward that 9?
Sorry for such a clouded question, Im sure it is an easy answer... Does that mean 9% of 100 will get reaccurance even on A1? YIKES?!! How does Rads fit in?
Thank you GMA!!
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B123 - With arimidex - 9 out of 100 women will have a recurrance... Without arimidex - 18 out of 100 women will have a recurrance. Oncotype only works with if chemo will help or not AND the recurrance with an AI. It has nothing to do with rads but rads will kill any missed cancer cells that were still in your breast after surgery.
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So I think that means a 50% risk reduction.....
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Yes you are correct Ruthbru
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I am glad I found this thread because I have been on Arimidex for two months and am miserable. I took my last pill this morning. I don't intend to take Arimidex again. I've gone from an energetic active 54-year old to a woman who can hardly move in the morning and has no energy to do anything (a tough problem with 8-year old twins). I constantly have a low-grade headache. I am not a complainer and have been through BMX, chemo, and radiation, with a DIEP scheduled on October 10th. None of that was easy, but each had a foreseeable endpoint well short of five or ten years. I can deal with the hot flashes and the weight gain, but not the overall crushing effect on quality of life. I am drinking every green drink, protein drink, eating very little gluten, etc., to try to forestall the effects, but nothing is working.
I'm looking for a recommendation for a medical oncologist in Northern Virginia, preferably in the Leesburg area. I did a quick search and found 10, but need to select one from the group and would prefer a recommendation. I'll likely switch to tamoxifen, but also need to switch oncologists as part of that process.
If you are one of those many women who don't experience Arimidex side effects, be thankful. I'm crossing my fingers that Tamoxifen will be kinder to me.
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My Onc won't even discuss the options he has in mind until I'm off the arimidex for 6 weeks. I think that is what drives me up the wall.
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Sherryh16 - I got all my percentages from my MO. (I never had the Oncotype test.)
Based on my type and size of cancer, the surgery I chose, and the results of my final pathology report, she is the one who gave me those percentages.
SO - I took my first Anastrozole Wednesday night. Last night I was sitting at the computer, sweating. My first thought was "Curse these hot flashes!!!"
Then I remembered I had just taken a very hot shower, and for some reason, put on my very heavy, fuzzy, winter bathrobe. (And it's still summer here!) DUH!!!!!!
So far, so good......
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GMA and Ruth, I think that is good but I still just dont understand it?? So if the oncotype is only for whether chemo or not, why do we use the number for percentage? Im so confused.. so sorry!! I had BMX, Rads and A1, I thought that counts to your reduction in reaccurances??
NancyJ, sorry for all your pain, I totally understand. The Claritin these lovely ladies recommended worked great but now my stomach is doing a dance!
Blessings.. so glad its working for you so far.. that is funny about the hotflashes!! What was your scores and how did your doc figure that out??
Thanks!
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Someone's onc. told her not to take multi-vitamins.
B123, unfortunately a BX and rads will take of any cancer in the breast area itself. It will do nothing to affect cancer cells that may have already escaped. Even if you are node negative, there is a chance that some (too small to detect with the current technology) are already out there lurking. The lower the stage, the lower the chance. For me, without BOTH chemo and Als, there was a 54% chance of recurrence!!!!! What chemo does, is try to kill any cells out there. If you are estrogen positive what those cells feed on is estrogen, so by shutting down the estrogen, you are shutting down the 'food' source of any still lingering cancer cells...which will hopefully also kill them!! It really is a WAR.
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Jo, I'm not a vegetarian. I have cut out pork and beef, don't drink alcohol and try to limit my sugar and bad fat intake. Once every other month or so, I'll treat myself to a buffalo burger or a grass fed beef burger. I eat lots of nuts and use olive oil. I am mindful of what I put in my yap and have just eliminated most of the empty calories I used to eat. I actually feel great, better than I have in a long, long time, when I'm not on an Rx. My skin cleared up, one of my oldest friends asked me if I'd had a chemical peel, seriously. I haven't been sick once and have eliminated my hayfever allergies that I have suffered with all my life since I started living healthier. I weigh what I weighed in high school and nobody thought I was skinny back then, I just looked like everybody else. I'm working with a Naturopathic Oncologist who monitors my Vit D level. My bone density test was good. What does the Claritin help you with, side effect wise? I don't have any stomach issues, Arimidex just makes me feel crazy and I can't sleep.
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Jo and Ruthbru, Thank you for that! Sounds a bit scary when you put it all in one lump sum but makes sense! So, I guess Im on the right track then.. As for the multivitamins, Im a little worried myself to take more?? I have never heard of that?
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I think plain multi-vitamins are fine. Most of us need them for overall health.
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My MO told me it was o.k. to take fish oil, calcium, and Vitamin D3, but individually, not in a multi-vitamin.
She wants me to get my nutrition from real food, not supplements.
She especially warned me against taking anti-oxidant supplements, as some recent research has shown that in addition to protecting healthy cells from dying off, they also protect the DNA in cancer cells.
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Picked up a Rx for Trazodone, some Claritin for good measure, and will give this another shot. My Onc's office finally called today, then had the nerve to tell me to call the pharmacy to make sure the fax had been received as "they didn't want me to be without it all weekend". And I thought, really? You left me hanging all week, but you don't want me hanging over the weekend? Fingers crossed!
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Mom2jj, I persevered on arimidex for 3 years and suffered all the side effects and felt I was an old lady (im 46 now). A few months ago I changed from a normal solid calcium/caltrate pill to green calcium liquid capsules and also take a probiotic. Im not sure if either of them or the combination together, but my s/e's hae improved so dramatically I keep telling everyone about it lol. I could stay on arimidex for the rest of my life now if I had to because I feel like I did pre cancer now. I felt the huge improvement within a few days of taking the supplements btw.
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Ruthbru - Congratulations on finishing your Arimidex!
Linda1966 - What is the name of the liquid calcium pill you are taking and does it contain shellfish? Also, what proiotic are you taking?
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http://www.greencalcium.com.au/ is the website that has all the info on the green calcium that I take in its liquid capsule form. It says no crushed coral or oyster shell and I would assume its available around the world under various labels or that if you check your local health food stores specifically mentioning what it is, they can help you.
The probiotic im taking is Nourishing Flora http://www.totallynatural.com.au/nourishing-flora.html which was also just at my local health food store. Both were given to me by a naturopath who I had a consultation with.
Not sure if its okay to put these names and sites here or not, so if this is deleted, just pm me and I can give you them again. Hope this helps
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Ok..so I know this has probably been covered on here already, but I've been reading this thread for over an hour, and I still have questions.
I'm expecting my 1st mail delivery of arimidex (1st time taking it too) on Monday. I've taken an OTC sleep medicine for at least 12 years. I know...I'm an OTC junky. I also take melatonin. If I can get 6 good hours of sleep, I'm happy. This is the Se that most concerns me, though I know not everyone has SEs. I'm assuming, I'd be less apt to have insomnia if I take the arimidex in the morning. Is that right?
I do need to move a lot more, and I have plenty of fat to get rid of, so I'm getting on the gazelle. I walk with a cane, which I hate, so walking literally wears me out. It's the cane, not the pain. I think I might get less tired with a walker.
I already take calcium, potassium, & magnesium to avoid leg cramps. Take D3 because mine was low in April, B12 for pernicious anemia, low dose aspirin, and fish oil.
I didn't have hot flashes during menopause 12 years ago, so I'm hopeful that I don't get them now. Actually, I would not have known about the menopause at all except that my periods stopped all at once. I was as regular as clock work. Every 28 day, lasted for 4 days and done. I was a few days late one month so my doc gave me a blood test, and told me I was done. I had slid into home base!
What else do I need to know going in? All comments appreciated.
Blessings
Paula -
JO-5 - I started peri-menopause when I was 46. Didn't have many hot flashes, but I sure had those "freeze flashes"!!!! I just couldn't get warm - sometimes I'd wake up in the middle of the night to take boiling hot showers. I'd sleep with the electric blanket on high, even in the summer!
My OB-GYN briefly put me on birth control pills for heavy bleeding due to fibroids. (I had already been on them from age 17 to age 44.) Then I abruptly stopped taking them, and menopause hit me full force. I had not only classic hot flashes every 20 minutes, but horrific night sweats every 45 minutes. The worst part of it was losing my short-term memory. In conversations, I couldn't even finish a sentence because I couldn't remember what I had been talking about.
So at age 47 I started hormone replacement therapy (HRT), which gave me my life back. I knew the risks, but my QOL was more important. Then I had a complete hysterectomy at age 48.
I continued HRT (estrogen only) for almost ten years, and when I stopped completely, I had no menopausal symptoms whatsoever. I made it through. (And yes, "they" are right when they say that menopause is really about a ten year process.)
I was 60 when I was dx'd with BC, 61 when I had my BMX, and will be 62 in two months. In the back of my head, I'm thinking that because menopause and I had such a rocky relationship in the beginning, but worked it out, I will be o.k. on the Anastrozole.
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I started taking anastrozole in March of this past year. No major side effects but my hair is really thinning. It will stop for a while and then start. My oncologist told me to take biotin which does seem to help. Otherwise there's not much to do about it. It may stop or continue the whole 5 years she said. Hopefully it won't last the whole 5 years and I feel lucky that so far that is the only side effect. I get some joint aches, but they started years ago. My primary care doctor told me about using CoQ10 which I guess does seem to help.
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Jo, good question, I would love the answer too.. I dont know that many really have that answer?
Cheryla, I am sorry for the SE your expeiencing, Hair thinning?? Is it really bad? Now Im a bit worried to keep taking this stuff. I have been taking Bioten for about 9 months now and I do feel like it has made a difference but I hope I dont wake up to find my hair falling out! That scares me... What is CoQ10?
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Try Nioxin shampoo and conditioner. I didn't need it for Arimidex, but that is what my hairdresser advised so that my hair would come back nice after chemo. You can buy it at any beauty salon.
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YOu may also be able to find Nioxin at TJ MAxx a lot cheaper, as well as Ulta.
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I just read an article that said that newer studies have shown that taking multiple is ok as long as the vitamin is not more than 100% of the daily requirements; that higher levels can stimulate cancer cells. I looked at one today at the store and for one of the vitamins in it was 3335% of the daily requirement. Really, who needs that much of anything? That is crazy.
I too have heard the Oncotype is just for chemo, but my MO also used it for my recurrence rate. The thing I have found about studies is that some test results on which they base their recommendations include deaths of any sort that occur during studies. So if you are in a test and walk outside and get hit by a bus, you go down as a death. Conversely, if you live 61 months and die of cancer, you're listed as a survivor because you made it past the 5 year (60 mo) mark. There is no consistancy in the results for tests on meds or cancer in genreral. The protocol can be very different. Some show absolute risk of CA recurrence as low as 3% without meds. Makes it hard to figure out the true risk and how much is a scare factor.
Biotin has been working great for me, btw. My hair is growing in great. My sister likes Bosley shampoo and conditioner for thinning hair.
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I have been using Bosley. It was recommended to me over Nioxen.
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My bs mentioned hair loss as one of the main reasons women stop AIs.
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The lack of memory, massive bruising, insomnia and horrendous joint pain made me stop. The hair loss was the least of my complaints.
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So Bosley or Nioxin are good to keep hair from thinning and actuallly make it thicker? Is it really in TJ Maxx??
Mini1, Im a bit confused by that? The oncs say different things about the Onco scoring and people say another. What is the point of it then? My onc told me I am at low risk and the oncs base the treatment according to the Onco Scoring (most times). So, basically we have about 5 years and from there who knows?? That is a bit scary... What are we fighting for then? sigh...
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Hi again.. Just looked up Nioxin and Bosley, it shows that Bosley has Soy ingred in it, is that safe to use on us ER+ gals?? Thanks everyone!!
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B123 - I'm not sure if the limited amount of time the shampoo would be on the head would make a diffference or not. I guess you'd have to check with your MO. My sis doesn't have BC, just thinning hair, so I'm sure it's never crossed mind. I guess its probably not any worse than the chemical filled shampoo we use now.
I'm right at 18 for my oncotype score which is the highest of the low and the lowest of the intermediate. Why it's not 1-17 and 18-37,or 1-18 and 19 to 37, I have no idea, but it's 18 and in both categories. All I know is what the doc says. I do notice on various threads that diffferent docs and cancer centers recommend different things; especially creams and such for radiation. As for the rest, I think it's a big genetic crapshoot. I have had 80+ year old women tell me that they had cancer in their 40's or 50's had a mastectomy and never had another treament and they are fine. Others have to be more aggressive. Yet we're supposed to either follow blindly or somehow figure out what's best for us when most of the info out there is conflicting. It's very confusing.
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Wondering if someone could direct me to link that showed which over the counter products interfere with how arimidex is supposed to work. I thought I had seen it here somewhere, but now can't find it. Got the links on the foods to eat/not eat, but wondering about which other items should be avoided. Thanks!
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I don't think there is anything special you need to avoid with arimidex (except maybe grapefruit, which seems to interfer with many medications....I love grapefruit). You may want to avoid somethings (like flax and soy) because they produce a pseudo-estrogen effect, which we would want to avoid as estrogen positive ladies whether we are on Arimidex or not.
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There is some debate if it's the form of soy is that makes the difference, which is why some Asian countries have very low levels of BC. In Japan they eat it in a pure form, not processed like much of it is here, but until they know for sure, I'm with Jo-5 and avoiding it. Like wheat, they sneak it into things that you'd never expect it to be. I've become an avid label reader. Once something is deemed good for you they feel the need to stick it in everything whether it needs it or not. It is a major allergen though, so many products will note it on the label as they do with wheat, peanuts, etc.
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My ONC Nutritionist says its the soy protein and/or soy protein isolate that you need to stay away from..
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I found one of the best foods mayos doesn't have soy - Best Foods Canola..
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I hated mayo until my daughter-in-law made some homemade mayo. She says it's really easy to make and you know exactly what's in it. I have to be careful with labels being gluten-free, but you're right, you can make yourself crazy watching everything. The easiest way is to eat as much of your diet fresh. Packaged food has too many nitrates, sugars, fats, etc.
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My naturopathic onc advised me to avoid soy, she said that Oriental women metabolize soy differently. She does have me using ground flax seeds though as they help to eliminate estrogen from the body instead of it being reabsorbed before they are eliminated. I try to use about 2 Tbsp a day in my yogurt, oatmeal or smoothie, depending.
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I thought flax was also on the no-no list???
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Not on her list and I trust her. She's a board certified naturopathic oncologist and there are not too many in the entire country, so I know she does her homework. But I think everybody should weigh it, trust their own gut and make their own decisions on their nutrition choices.
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I have to tell you gals, this all gets to be so confusing.
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I, myself, would not add flax.....
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phxsunshine and sherryh16,
Non-steroidal inhibitors, such as anastrozole (Arimidex), inhibits the synthesis of estrogen via reversible competition for the aromatase enzyme. Basically it blocks aromatase from converting androgens into estrogens. It has nothing to do with body fat, diet, or weight.
My oncologist also banned antioxidents as separate supplements but she said that the amount in my multivitamin was not enough to be harmful.
As for risk percentages, they are totally useless. They are simply mathmatically calculated from large numbers of people with similar circumstances. Any given individual's risk of anything is always either 100% and 0%. Something either occurs or it does not occur.
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nancyjac - I beg to differ somewhat. I'm on anastrozole and my MO was adament that I not gain weight and I'm at a healthy BMI. The following indicates that being overweight and obese makes you more at risk for recurrence. http://www.breastcancer.org/risk/new_research/20120830.jsp
To me it's logical. A 1mg dose for someone weighing 120 lb has to be more effective than the same dose for someone weighing 180 lb. If my SEs were not so mellow, I'd challenge my MO on this "one dose fits all."
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Nancy and Doxie - Fat stores and makes estrogen. That is why weight has a play in all this.. The ONC took me off of arimidex because of the adverse reactions I had being low/no estrogen.. I want to take it but he didn't like what it did to me, therefore the first thing on my list is getting rid of the "fat" in my body.. the second is staying on a cancer foods diet and staying away from estrogen producing foods.
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This discussion made me dig around and I found this article, so I think, nancyjac, you are 1/2 right. Paragraph 10.
http://www.menopause-weight-gain.com/articles/Estrogen_101.shtml
I do agree with your 100% or 0% for individual risk, but risk percentages are not totally useless. Without them I would have been given a course of chemotherapy which would have shortened my life and done nothing to kill my cancer.
I'm stopping the arimidex. I got all the SEs I had from femara and aromasin combined plus yesterday started my hands shaking and an amost migraine quality headache. I did find help getting a specific type of generic tamoxifen (Mylan brand) which I am going to go back to, through an online pharmacy my insurance works with, Express Scripts. So thank you to the gal who suggested that awhile back.
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Just saw this thread but haven't read through the posts. Just wanted to say I've been on ESD (estrogen sucking drug) Anastrozole since March 2011. I was slightly osteopenic before chemo. I did have some loss after chemo, chemopause and 5 months of ESD (about .10%) but minimal. Just had my scan again and I've lost even less so that the percentage numbers have stayed the same. They are now recommending density tests every 2 years.
I do take calcium, D and exercise daily including strength training and cardio (fast walking).
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lago, I love the ESD reference, you are hilarious!
Just got this article in my inbox from WebMD - pertinent to our discussion of estrogen and body fat:
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Great - just what I wanted to hear..
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Dang, I knew I shouldn't have eaten that peanut butter cup!
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While many Kaiser docs refer their patients to the Weight Management Program I'm in (Optifast), my MO refers the majority of her cancer patients who are significantly overweight.
My friend in the program is an ovarian/uterine/colorectal cancer survivor. We share the same MO.
My friend said the MO told her that she had come too far and fought too hard to survive, only to be at high risk for additional cancer worries due to her weight. So she and I started the program at the same time, and both of us are just a few pounds above our normal weight.
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This weight thing is nothing new. This article is from Jan. 2011
…Short of resorting to such drastic measures, all women can reduce the risk of getting breast cancer by drinking less alcohol and losing weight. "Patients want to know what they can do," says Cobleigh. "It used to be you could say, ‘There really isn't anything.' Now you can say, ‘If you control your weight after a diagnosis of breast cancer, you'll be less likely to die.'"
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This is all so interesting and confusing.. I lost alot of weight when this all started and I have maintained it (gained about 5lbs back) but Im at a good place. I heard that Arimedex makes you gain? How do you control that? And I also heard Flax was good for you, lots of gals on here were eating it with oatmeal?? Now its not? Hmmm....
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Interesting. Before my chemo I took arrimidex for a month and felt absolutely nothing. I even asked my onco how we knew I was metabolizing it?
Then I had chemo, last infusion March 15. Started arrimidex again April 15. by July the aches were becoming unbearable and I could not stop crying. I asked one dr how that could be? Does the Arrimidex build up in your body? She said, no, the level stays the same and there should be no change.
Well, I called Memorial Sloan Kettering and they told me that in some people the symptoms do build. They told me to go off of it and then start Femara. I've been on Femara for about a week now. Some aches, but not like before.
On the arrimidex it reached a point where I could do nothing but lie in bed on a heating pad. When I realized I could not go to a favorite class because it meant sitting in a chair for over an hour, I stopped taking them and all of the pain and depression vanished.
It is hard to tell exactly what causes what. We've been through so much!
I sure hope I can continue with the Femara. I have good days and bad. Yesterday was good today was horrible. But it could be from xanax withdrawal too. I just looked that up. I am exhausted. Terribly tired. And I can't seem to lose weight. Maybe Optifast is the way to go because I really need to get rid of this weight. I only makes everything worse.
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I'm still not clear on relating the research to those of us carrying genetic mutations..., does obesity REMAIN a factor in calculating recurrence??? Or is it the mutation that we carry that caused it??? So much more to learn!!!
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C-squared I thought it was due to the fact that "fat" helps build estrogen in post menopausal women. More "fat" more estrogen therefore more fuel for estrogen postive cancer.
Timbuktu I had no SE the 1st 3 months an ESD (anastrozole). Then I started with the stiff fingers and toes, etc. I'm still functional though but this spring after being on it for a year I noticed one of my fingers has trigger finger in the morning. Also my fingers are somewhat stiff all day unless I am constantly moving them and I don't mean typing I mean making and releasing fists.
1.5 years down. 3.5 to go.
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lago.....6 Anastrozole pills down, only 1,819 to go.......... (not that I'm counting, or anything)...
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Unless your onc decides you should continue another 5 years
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I took my first Arimidex yesterday. Haven't noticed anything yet. Took Tamoxifen for two years and got by with mostly just stiff/sore knees and bad foot cramps at night. Hoping I only have a few annoying side effects on this new medication.
Did any of you ladies take Tamoxifen prior to Arimidex? What did you notice when you switched medications? I know everyone is different. I'm just curious what others experienced at this point in treatment.
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Hello to all,
I haven't been on this board for quite some time but just thought I would check it out. I am trying to figure out the thread about mayonnaise and soy so I went to my fridge and checked my mayo jar. It does say made with soybean oil. Oh brother, I just had a chicken salad sandwich with mayo for lunch. I love mayo but may need to switch to the olive oil kind from what I read here. I have been on arimidex for 5 months now and haven't really changed my diet all that much so maybe I will need to start reading labels. Basically I am doing very well with few side effects and have resumed my usual diet. I maintain a healthy weight well within the normal BMI that I am suppose to be in. I guess I just want to think because I feel "normal" I can go back to my normal lifestyle but such is not the case. Still......I think we can get neurotic over all of this and I am trying not to do that. I go by the way I feel and if I feel like a chicken salad sandwich with mayo for lunch, that is what I have. When I finished treatments at the end of April of this year and met with my MO she did not say NOT to eat certain things, just to make sure to get a well balanced diet and to not have a lot of soy in my diet. She asked if I was a vegetarian and when I said no she said "good" because most vegetarians do have a lot of soy in their diets. I do take a multi-vitamin every day and Calcium with Vitamin D-3. My bone density scan showed osteopenia which I knew I had but the score had not changed in 5 years. I guess after a year on arimidex, they will run that test again. Basically obesity is at the root of most diseases so it is always good to keep the fat off. I will ask all these questions on my next 6-month checkup on October 25th.
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I started ESD yesterday morning (thanks lago). Twice yesterday I had a funny feeling in my mouth, kind of a funny taste or feeling. Hard to describe. It came about 6 hours apart and only lasted 30 minutes or so. I took 1/2 Xanax at bedtime and slept much better than usual. I didnt move until the alarm woke me at 6am. I think the fuzzy mouth feeling was from time released Claritin.
Anyway, I pray it stays like this. I've had no problems at all today.
Blessings
Paula -
Well, today marks one week on Anastrozole!
I take it at night, only because I thought I'd remember it better that way.
But last night was awful: terrible insomnia, and hot flashes all night. I got maybe 2 - 3 hours of sleep. And - GRRRRRR - my brand new ta tas (exchange surgery 8/22/12) felt like TEs again!!!!
Sooo painful!!!!! So as I tossed and turned and grumbled and moaned, I got to thinking - is it the AI? Could I have SEs already?
I know my "freeze flashes" are gone. The hot flashes are bearable. The insomnia? Well, I'll start taking my pill in the morning and see if that helps.
I've had some joint stiffness and pain, but I've also gone from exercising nearly every day, to a MONTH of being a total couch potato. My PS hasn't released me to do any exercise that raises my heart rate yet. So maybe I'm just stiff from lack of exercise.
And I had a TON of pocket work done at the time of my exchange....and I was trying to sleep on my side in a tight sports bra last night. After I made it back to the recliner, I snatched a few ZZZZZZZZs.
I also haven't built the fish oil, aspirin, calcium, and Vitamin D into my daily regime yet.
I'm not ready to give up!!!!! (But DANG, I hate insomnia....)
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My NP told me to take it in the morning because many women do get insomnia. I know my onc made sure my D levels were correct too. I think low D might make you feel bone discomfort but not sure.
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Lago~how much vitamin D should we be getting? I'm pre-op, but after my yearly Bloodwork in April my primary ph called to tell me to take D3 because mine was low, but he didn't say how much to take.
Ruthbru told me to take the arimidex, that I started yesterday, in the morning. I had no insomnia last night, and I'm prone to it anyway.
Blessings~I already have myself trained to take low dose aspirin, calcium, D, and fish oil everyday, so after surgery I think I'll be able to go right back to it.
Be blessed
Paula -
Soteria you need to call your doctor and ask how much. Mine was very low initially, I mean single digits. At first I was on prescription strength. I think total 1400 but then there is some in my vitamin. I'm now in high, just above normal range. My PCP says that's OK for me. You can take too much depending on your medical issues so it's important to check. You may not need as much as I need.
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I'm copying a post I made awhile ago after hearing a very interesting speaker. The speaker was a doctor, nutrition specialist, and an eleven year breast cancer survivor. Here are some of her tips for staying healthy and they may help with some of the vitamin questions:
1. We all know we should eat more fruits & veggies, whole grains, less red meat, processed food etc. so I am not going to go into any of that.
2. EVERYONE should be taking a multi-vitamin. Make sure it says ‘Complete' on the label. Make sure it contains iodine, Vitamin K, selenium and folic acid along with all the other good stuff. Interesting facts about why multi-vitamins are important:
* older women with the lowest levels of vitamin B-12 were at the greatest risk for breast cancer
* taking acid-blocking medications make you less able to absorb B-12
* she recommends 400 mcg of folic acid a day. It works with the B-12 (studies have found that folates may help to make chemo more effective and decrease side effects)
* B 6 is important in lowering the risk of breast and colon cancer
* she recommends 90 mg of vitamin C
* 30 iu of E
3. Omega 3.....either eat oily fish twice a week or use fish-oil supplements (make sure it says EPA and DHA approved) 1000 mg a day. It's associated with decreased risk of cancer, heart disease, inflammatory disease, depression and more.
4. Vitamin D....a big deal.....she recommends getting it tested (should be between 40-50 ng/dL). She recommends 2000 iu a day to maintain a good level. Many, many conditions are associated with low vitamin D; heart attack, cancers, rheumatoid arthritis, muscle weakness, asthma, diabetics, multiple sclerosis etc. etc. etc. There are over 200 different body tissues that have been identified so far that have receptors for the vitamin D hormone and they need it to work properly.
* adequate Vitamin D levels has been shown to reduce the side effects of taxol based chemotherapy
* Adequate Vitamin D has shown to reduce the side effects of aromatase inhibitors
* start with a multi-vitamin, drink milk, eat yogurt (check and make sure it has vitamin D added), and most people will also need a supplement to keep that high of levels
5. Vitamin K, should get 100 mcg a day. Check your multi-vitamin, not all of them have it added. Inadequacy leads to an increased risk of various cancers, heart disease, osteoporosis and kidney problems.
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Thanks for that great info on the vitamins Ruthbru. It amazes me that none of the docs seem to give you a lot of the info that I have found out from this group. Thanks all
Has anyone been on venlafaxine ER? Supposed to help alleviate anxiety caused by anastrozole. Also as se it apparently helps lessen hot flashes.
GrannieVal
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I started looking at what was in my vitamins and supplements and found several that were labeled as "natural" but had ingredients in them that they use in cosmetics and paint (titanium dioxide), hyfrogenated oils, talc, red dye #2, yellow dyes, etc. I took them all back and replaced them with better ones and they actually cost me less not more as I expected.
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I think Ruthbru's recommendation of 2000 iu of Vitamin D3 is a good place to start. I took 2000-3000 iu daily for 3 years and never got above 25 on my lab work. The endocrinologist is now recommending 5000 iu daily for me. I would love to double my level. Definitely work with your health care provider on this one. You may need more to correct a deficiency or you may need less during the summer months when you get more sun. Just depends. But 2000- 5000 ius daily is well within the safe limit according to endocrinologist. And take with a meal. It is fat soluble so needs a bit to be absorbed.
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Dobie
Thanks for the advice. I take D3, but I'm pretty sure mine is only 1000 iu and mine was low in April. I'm not much of an outside person, other than driving, so I don't think I get much from the sun. I was surprised it was low, because I take calcium with D, though, I must confess, I hadnt been very diligent in taking the second one everyday, but I'm trying to rectify that.
Blessings
Paula -
I use a liquid form of Vit D that gets directly into blood through the mouth... I started 1 year ago, my number was at 26 and was tested again last month and was at 63.. It is the best! That way it doesn't have to be digested - vit D has always be absorbed through the skin into the blood stream.. Just a thought.
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Ruthbru thanks for the run down on vitamins. I checked mine after reading this and it fits the bill. It is complete and has all that was recommended. I do take an additional pill for Vitamin D3 that is 2000 IU. The last time I saw my oncologist I asked her if there was such a thing as taking too much Vitamin D and she said no. I get Vit. D in my multivitamin, calcium vitamins and all by itself so I wondered. My D level was on the low side of normal (43) almost a year ago when they tested it before I started chemo. I do get out in the sun most every day (if the sun is shining) but coming right up, living in the far Northeast, that will diminish. GmaFoley, where do you find the liquid form of Vitamin D that you spoke of? I do have to say that I am not having any joint pain at all on Arimidex. At first, my knees and thumbs ached a bit but that was it. I may suffer from anxiety from time to time, but I have been that way all my life anyway. I promised myself I would not sweat the small stuff after I got my bc diagnosis but find myself reverting to my old ways. It may be in my DNA. Great information in these last few posts. Thanks.
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Maggie - I get mine from my chiropractor but you can go to this site:
http://www.professionalsupplementcenter.com/BioDMulsionForte.htm?gclid=CPTA7aHesrICFWHZQgodGU8A3w
You might have to find a natural health doc to buy it I don't know.. All I DO know is for me it works great. I put it on my tongue before I drink my smoothie in the morning.. it tastes like sesame, not bad.. My PCP had me taking 2 drops = 4000 IUs plus what I had in my multi, another 1000.. Onc said keep it up and he is going to try to get a supply for others.
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I have to take 50,000 IU of Vitamin D once a week. I was seriously malnurished last year after another health matter and was serious depleted of D among other things. It comes in a gel tab but I'm looking to change to a sub-lingual form.
You may want to check sites that have vitamins for people that have had gastric bypass surgery.They have a lot of drops because the meds can't spend enough time in their gastric system to be digested.
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I have been taking the gel cap form of vitamin D but since upping my dose decided it would be easier to take liquid rather than a handful of caps. I have heard that it is absorbed easier as well. I bought liquid Vitamin D on line from Puritan's Pride. Very reasonably priced. As I have mentioned before, I give a RX form of vitamin d called Drisdol to our pregnant ladies who are deficient. It is 50,000 iu taken weekly. Thats probably what you are taking, Mini1. I retest after 12 weeks and repeat as needed. Once they are at a normal level which in our protocols is 35 , maintenance is one Drisdol monthly or 2000-3000 daily. Actually it is possible to OD on vitamin D but it is something like over 40,000 iu daily so you would have to work really hard to do that! It is not possible to OD on vitamin d from sun exposure though. The body is able to regulate that.
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Are most of you dealing with your MO on the D3 and vitamins? Yesterday was my first visit with her and she handed me a script for Arimidex (1mg) and said to start it right after I finished rads and then see her a month later. That was it. I asked if I should have a bone density scan and she said ok (have that tomorrow). This woman also has a PHd in nutrition but no other advice except to say I might have a few side effects and let her know. I'm so frustrated right now. I guess I need to search for another oncologist and quite frankly I'm tired of having to figure everything out myself....I dumped my primary because he decided to tell the breast center not to give me my initial biopsy report that he would handle it. I never went to him regarding this...went straight to Betty Ford Breast Center the day I found the lump. So, now I'm trying to find a primary who will work with me on all this. None of this is easy. I appreciate all the posts on these forums--it helps with the feelings of isolation.
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Junif - I'm working with a naturopathic oncologist who works with my MO. She monitors my vit D level and helps me deal with the side effects of the adjuvent therapy. She and my breast surgeon both recommended I read, "Anticancer - a new way of life". It's a good resource to help you help yourself. You hang in there, this is a good place to come, never feel alone, we are here for one another. BTW, I've decided "frustrated" should be listed as a side effect of cancer. Remember, you are your best advocate and you sound like you've got enough spunk to handle it. Hugs to you.
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Junif, (((((hugs))))).
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My onc checked my D again but she leaves my D management to my PCP. My PCP is awesome. He's the "country doctor" type although right down the street from me in the city. I swear he could have posed for a Norman Rockwell painting.
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My oco doc leaves that all up to my reg doc. Thank goodness she prefers the natural way to do things whenever possible.
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Moonflower--thanks for the hugs--I needed them today! Sunshine--I just had the book you recommende put on my Kindle. Today was just one of those frustrating days. I just get so tired of having to research everything and I'm not terribly happy with this MO and just put out some feelers for a new PCP. I did email the nurse navigator and requested copies of some reports that I didn't get before...she told me I had to sign a release to get them...WTF...let's see, they are my reports, I paid for them and I have to sign a release....sounded like a sick joke.
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Junif, its the Hippa law that makes them have you sign a release for your own records. If something on it leaks they can prove you had the info too. Insurance rules our life.
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So I have a bit of a catch 22. I have osteoarthritis in one knee. Cortisone injections work well but not long enough and my orthopedist does not want to give me a shot ever 2 months due to the cumulative side effects of long term steroid use. My oncologist wants me to do weight bearing exercise to maintain bone density. So basically I have to suck it up in terms of the knee pain, or take NSAIDS on a long term basis, which have their own side effects. I am not a candidate for knee replacement at this point.
So I'm interested in any body else on an AI who also has osteoarthritis. What do you take for the arthritis that has been approved by your oncologist in terms of interaction with you AI? I am already taking low doses of naproxin and considering adding a capsaicin and/or glucosamine/chondroitin/msm supplement.
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Doxie and Iago, I agree with you that obesity is a factor in many things, but that is not at all what I was addressing. I just meant that the way AIs work in terms of blocking aromatase conversion to estrogen does not vary based on an individuals diet, weight, or percentage of body fat.
GMaFoley, Estrogen is a catabolic hormone causing an increase in body fat and increased aromatase, whereas testosterone is an anabolic hormone that promotes muscle growth. So it is actually the other way around. Estogen can cause an increase in body fat, not body fat causing an increase is estrogen.
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I deal with my GP for everything except the 'cancer' stuff (and I have run any of their recommendations that I'm not sure of past him too). Most specialists just deal with their own particular area and don't address the 'whole' person......if you find someone who does, you are really lucky. I think on day-to-day matters, WE COMBINED know a lot more than we will ever get in any doctor's office!!!
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I also think oncs are soooo busy that they really don't have time for anything except cancer. Just keeping up with the news on cancer research alone is more than enough. The PCP is a generalist. Oncs are specialists.
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Ruthbru
I agree totally about the specialists. I have a 24 year old son who was diagnosed Type I Diabetic at age 6. He takes insulin injections 4 times a day. Since original dx, he has been hospitalized maybe 4 times for highs and once for a severe low, ( the scariest ).
I'm convinced that after all these years with dealing with it, and the education we got at Nationwide Children's Hospital, I know a whole lot more about Type I than any GP.
I tell my friends who are Type 2, they really need an endocrinologist to get the proper advice.
This is my 4th day on arimidex. Yesterday evening both hands were very painful, but thank God it only lasted a little while. This morning I felt like maybe I was getting a uti. I know I need more fluids, so I'll work on that today. I've never been good at getting enough fluids. If anything, I think I'm sleeping better than before arimidex. I pray that continues.
Nancy I've dealt with osteoarthritis since my early 30s. I had a knee replacement when I was 47. They wanted to do the other knee then, but I've yet to do that one. I'm now almost 62 and NSAIDs and ibuprofen are too hard on my stomach, so about a year ago I started taking generic Tylenol. I was amazed that when taken regularly it really works.
I get my generics at Walmart.
Blessings
Paula -
Drink, drink, drink. A friend gave me a pretty, yet huge (holds 4 cups of water) mug that keeps things cold. I put half of one of those little packets of crystal light in the water for some flavor, and it easy easy to get it down that way.
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My skin looks best when I'm hydrated. Best cheapest way to keep your skin looking great is to drink water!
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I drinking my fluids right now Girls. I've know for years that I dont drink a healthy amount of fluids, but I've stopped procrastinating. My skin could definitely benefit.
Blessings
Paula -
I sometimes buy flavored sparkling water. Just a hit of lime or orange flavor but I like the bubbles.
Paula, I've tried Tylenol, but it does nothing for me. Ibuprofen or Aleve generally work best for me, but I don't want to have to take them regularly long term for the reasons you mentioned. I'm waiting for a call back from my oncologist to see if I can take Osteo Biplex with the anastrozole.
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ruthbru - glad you can handle the Crystal Light mixes!
Too many nasty chemicals for me....just sets off my migraines and other issues (itching, etc.). I do see they came out with a "Pure" brand last year that contains Stevia....I may try that if it doesn't have any of the other chemicals in it.
This article talks about some of the carcinogenic chemicals in Crystal Light. I'd also be VERY careful if you're buying any kind of "flavored water" drinks. Gotta read those labels!
http://www.livestrong.com/article/413874-what-are-the-ingredients-of-crystal-light/
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Nancyjac and Paula, I have knee problems and was set to get two replacements when all this started. My PCP prescribed Tramadol, and that helps most of the time. I don't have to take it every day. I can't take anti inflamatories at this time. I have been off those since my original surgery in Dec of last year. But the Tramadol does work for me.
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Moonflwr
I used to take tramadol or the brand name ultram. It works wonderfully. It works thru the nervous system, but I have to be very careful to take it on a full stomach or it sets a fire in my belly. So, I take generic Tylenol, because I can take it on an empty stomach.
I twisted my knee once, and had 2 cortisone injections within 4 days. They didn't phase me, but my doctor gave me a cocktail of tramadol & Celebrex. Worked amazingly!
Blessings
Paula -
I take glucosamine/chondroitin supplement for arthritis pain in knees. I think that is what is in Osteo Biflex. The onc knows i take it and never said a word about any contraindications so.... either there aren't any or he doesn't know.
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Still haven't heard back from my oncologist about the osteo biflex and since it is now the weekend, I won't until Monday. I think I'm going to take it anyway over the weekend on the assumptions she will say it is ok to take. If not, then I'll stop taking it Monday.
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I just use half a packet, instead of a whole one, for a little flavor. I have never had any bad reactions to any kind of food (perhaps that is unfortunate). I'm not worried about the limited amount of Crystal Lite I drink. I think 'moderation' is the key word for most things.
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ruthbru - you're right - MODERATION!!!
I react so badly to so many chemicals, but Spenda (sucralose) isn't one of them, fortunately. I know on some sites, it's got just as bad a rap as aspartame, but it's an integral part of the Optifast program....we sweeten our shakes with sugar-free Torani flavored syrups!
I told DH I may have beaten breast cancer and lost 56 pounds, but my brain is probably mush from all the sugar-free Torani syrups I've consumed since March.
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Splenda is actually sugar to begin with, so it is a bit different from other sweetners. I must say I love the caramel syrup....
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Everyone needs a little flavor in their life!!
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Last summer I used the Cran•Lemonade by OceanSpray. It's really yummy. I too don't like it too sweet so I don't use the entire package but then I broke out with a rash on my legs and figured out it must be from that. At the time I was still on Herceptin. I've tried it several times this summer and so far no issues. I don't drink it too often but other than that I only drink water. Sometimes I too need a little flavor in my life.
I find most flavors Crystal Light stuff gives me a slight sore throat when I drink it so I don't.
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Lago I think it might be the citric acid that is most of crystal lite drinks that is giving you a sore throat..I only like their lemon ice tea and i use a half teaspoon of it in my water glass with lots of ice... that does it for me... if I use it full strength or drink too much my mouth and throat break out...
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I use citric acid (sour salt) in my sweet & sour cabbage soup and have no problems. Granted not as much as you find in those drinks so you might be right.
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Right now I have 16 bottles of Sugar-Free Torani Syrup on my counter. It looks like a coffee bar.
I already have Almond Roca, Caramel, Chocolate Macadamia Nut, Chocolate, Cinnamon Vanilla, Classic Caramel, Classic Hazelnut, English Toffee, French Vanilla, Irish Cream, Lemon, Mango, Orange, Peach, Peanut Butter, Raspberry, and Strawberry.
I really want to try Brown Sugar Cinnamon, Cookie Dough, Gingerbread, Peppermint, Pumpkin Pie, Vanilla Bean, Watermelon , and White Chocolate.
OOOPS! Sorry, nancyjac....thread hijack.......
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What is torani syrup?
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Msbelle - they are flavored syrups, either with sugar or sugar-free, that are very popular in coffee houses. They are very yummy
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Msbelle: You can sometimes find the Torani syrups down the coffee aisle in the grocery store.
Ruthbru: Thanks for the supplement info. I haven't been on in a few days.
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Do you use them for anything other than coffee?
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Msbelle - you can use them wherever you'd like a little extra flavor or sweetening.
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Ladies - for those of you who are new to Anastrozole, how long did it take for you to notice any side effects?
I'm having more joint pain than usual, and it's only been 11 days. Is it just my imagination?
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Mabelle I use them to flavor my sodas or waters.. I use them as syrup on pancakes or to flavor my pancakes..
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It took 3 months for me to start noticing SE from Anastrozole
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Within days I had side effects. After a week my doctor took me off it they were so severe. By the fifth day I was awake for 36 hours despite taking Xanax. I had multiple symptoms and they hit me hard and fast. I know I am in the minority here, but the SE's were brutal for me.
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Mini1 - you aren't alone.. me too - Onc took me off - I have 3 more weeks before he is going to talk to me and try a different plan of attack...
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I tried Aromasin the second time. I thought that one might be ok because the first couple of weeks I just had bone and muscle pain, but the SE's we cumulative and within 2 months I told him I would take my chances with cancer; I simply refuse to live like that. I had all the old SE's plus a few new ones. He wants me to try Tamox now. I'm very scared to try it given my track record with the others. There is a quality of life factor involved. I was 55 and felt 105. In fact I knew a lady that was 105 and she had more on the ball than I did on those meds. I know everyone always says it's better than the alternative, but for some of us it's just not that simple.
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I have been on anastrozole for 4 months and can't really complain of any specific SEs. Sleep fine. Have some aches and pains but did before I started. I have heard that effects can be cumulative and I have a friend who has been on it for 4 years and just now is having joint pain that is getting severe. Because of cumulative effect, switching from one AI to another seems to work for some keeping the SEs manageable. I just take each day and figure I will deal with SEs if and when. I agree that QOL trumps all and respect the decision to stop if needed to achieve it.
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I wonder if the tolerance for the SE's is related to the person's ability to metabolize the meds. I know people that have relatively few SE's and some, like me, get them all. There must be a reason.
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It probably has something to do with a person's body chemistry. Why am I allergic to most classes of antibiotics? Or my SIL really allergic to bee stings? Or why does the next person have a life threatening reaction to peanuts?
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So I'm guessing it's the Anastrozole that is making me ache and moan and pop 3 Ibuprofen every night about this time?!?!?! It makes me so sad to feel this way and NO one in my world understands the lasting effects of cancer treatment. They just think..., oh, well you're done now right? And when I ty to explain they just shake their head and say "a-huh" and it's so obvious that they don't have a clue! Aarrrgghhhh!!! So much more education needed for the general public to have an "inkling" of what we've been through! Ugh! I just want to cry! But I need to go get my Ibuprofen now.
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Ruthbru, I have that same loverly allergy. Mycins, cyclines,illins,and some sulfas. I give the infectious disease doctor the shakes whenever I have an infection, they always have double think my meds. Oh well, so far we have been dealing. But I do know the fear when even a sniffle comes up. are we having fun yet!
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Seems the only antibiotics I can take are the really pricey ones...my body must have expensive tastes! We will just have to stay well.
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ruthbru...Like you, I have been eating prunes daily...yesterday I read a report about the effects of them producing estrogen. have you heard about that?
Will see if I can find the article...
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Ruth I too have a few antibiotics I can't take because of allergy or bad SE. Tetracyline gives me an automatic yeast infection, Doxicycline puts ulcers in my throat and I'm just plain allergic to Amicillyn.
C-squared most will never know. I mean I look great but I too get stiff although not enough to switch drugs yet. The nueropathy in my heel at this point will never go away. My feet get very sore at times but I'm hoping its the ESD and not nueropathy. At least I know ESD is not forever. I have friends that really suffer from nueropathy and chemo-brain… and it's been 1-2 years after treatment. I think chemo-brain must be the worst. I can only imagine.
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It's probably the expensie ones because they are the new ones. Your body can build resistance to them over time which you have probably done; which would be especially true for you if you have a sensitivity to them on top of that. I know a lot of docs that get upset when people demand an antibiotic for themselves or their children when they really won't do any good, but they think because they're sick they should have one. They are doing more harm than good to themselves. Most colds and flu don't require an antibiotic unless there is a secondary infection. I worry about my son because as a child he was ill and needed a lot of antibiotics for several years. His resistance to them now is high. A serious infection would pose a serious treatment issue for him.
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I never took antibiotics till breast cancer… got some after every surgery. Before cancer I think I might have taken them 3-4 times as an adult. Not often as a kid either.
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I rarely took antibiotics. My PCP knew that I don't ask for them for every little thing. I've been with him for about 27 years. So we watched as I got hives with every antibiotic he prescribed over the years. When I got through a tx without breaking out, we celebrated and kept it on the short list. He would not prescribe the same one twice in a row. And some got knocked off the list the second time. It is a VERY short list now. Keeping my fingers crossed with the iv abx I am on now. Got to make it through two more weeks.
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It's funny how different we all are. I am a small person, yet at the dentist they have to numb me up like a Sumo wrestler. Same with pain meds. What would knock my husband out cold, won't even phase me. Yet I was only able to take the Anastrozole for 5 days before I had to stop. I made 2 months on Aromasin.
They didn't used to prescribe as much medicine as they do now. People think just because it is advertised on TV and FDA approved it's "safe," but look at all the recalls and meds pulled off the shelf. I even found ingredients found in paint and glass and listed as known carcinigens in my so-called "natural" vitamins and supplements. I know you can't make yourself crazy over every little thing, but you have to be vigilent about what you put in your body. I'm an avid label reader now. There seems to be wheat and soy in everything these days; both big no-no's for me.
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Can anyone of you tell me, is it really necessary to have a hysterectomy? I am bracha - and on Arimedex and Lupron shots. I am told its my choice but not sure how long we can stay on Lupron?? THANKS!
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B123 if you are BRCA+ you need to discuss this with your onc. linky
I tested negative but if tested positive I know I was thinking about it. -
B123~ I am BRCA+ and had oopherectomy (ovaries removed). As Lago said, discuss with your medical team.
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I tested Negative but was not sure if this was something we really should do to prevent any other problems? I am not sure how long one can do Lupron shots for? I am 42 and have a ways to go before menapause so I am thinking to do it but dont want to right now, maybe in the near future but just had enough right now with poking and proding that I just want a break. Thanks all!!
Also, the Arimidex, does anyone have headaches everyday from it and huge fatigue?
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B123...I had headaches (altho not severe) for the first few weeks. Am in my 7th month and it's been fine since then. I kinda blame the rads for my fatigue...also I have never slept well for years.
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I'm on my 10th day of arimidex. So far NO side effects!!! I really did a lot of praying before I ever started taking it, and I do take a Claritin with it, but if anything, I'm sleeping better than ever.
Blessings
Paula -
Soteria...thats great!! I am into my 7th month and no SEs lately. Some of us are just luckier than others. Sad!
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B123 Don't be so sure you want to rip out those ovaries. Estrogen does play a part in heart and bone healthy. You do need some. You really need to way the pros and cons. Typical age for menopause is 51. By the time you finish Aanstrozole you could be well past that if they decide to keep you on it for 10 years. Studies on 5 vs 10 keep coming out. Last I read luminal A cancers do benefit from 10 years.
Soteria205 I had no SE for the first 3 months. Granted my SE are still very manageable. -
Wow, that was a fascinating study. Thanks for sharing Iago.
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I wish I could sleep too, its been difficult since taking the A1 and the hotflashes are alot to handle at times.
Soteria and Schatzi, your so lucky to have such min SE, god bless you both! I hope my headaches go away too.. I am 3 weeks in so far so I guess I will give it time.
Lago, thank you for sharing that, I have scheduled surgery 3x already and canceled ea/time because my gut is just telling me not to do it but Im afraid of any other cancers if I dont?? What is Luminal A?? I never thought of it that way about heart/bone health, I guess I just viewed estrogen as the enemy now and to rid it as much as possible. At the same time, doesnt Lupron shut down the ovaries so there is no estrogen anyways?? So confused! :}
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B123 click on the word luminal A in the original post, or this post. It's all explained there but from my understanding you're most likely a luminal A and I'm most likely a luminal B (according to the definitions on that page)
Lupron shuts down temporarily. Oph is forever.
"Once the ovaries have stopped producing estrogens, however, they still continue to produce small amounts of the male hormone testosterone, which can be converted to estrogen (estradiol) in body fat."
And that's why they want us women not to be overweight as breast cancer survivors.
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B123~ I went ahead with the oophorectomy because I was BRCA+ and it would decrease my chance of ovarian cancer (because of the genetic mutation). You are BRCA-, so I think your risk factor is much lower than someone who is BRCA+. Your medical team can do a better job of quoting you the statistics. The decision was practically made for me, being BRCA+ meant BMX and oophorectomy. I'm not sure I would've had the same approach had I been BRCA-.
I also have a "wicked" family history with lots of ancestry (including my own mother) that we don't know about BRCA status on. Those of us in THIS generation who have been genetically tested have all come back positive so far. There are others who do not wish to be tested as well. (& I respect their decision..., it is a personal choice).
Good luck to you. I think making the decisions for our course of treatment is one of the hardest parts of our treatment.
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That is for sure. I would add that once you do decide on a course, never look back. You do the best with the information that is available at the time.
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B123 I have had headaches every day for 2 weeks now. I will give it another week or two before calling the dr. Hopefully my body will adjust.
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Lago and C-Squared, thank you for that info!! It helps so much.. I feel good about my decision but still have some reservations whether or not to do it. It is not being pushed but they are not saying not to either.. my choice I guess.. More of peace of mind. You make so much sense!
Gayle56, yes the headaches are dull but still there and bothersome at times!! Hope it will pass... let me know how you do!
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B123 if you are still unsure get a 2nd or even 3rd opinion. BTW where in MA are you? I'm grew up SE of Boston. Parents live in S. Yarmouth
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B123 - also, know that estrogen is produced in other parts of the body besides the ovaries. I had a total hyst/ooph long before breast cancer but I still have to take an AI because of the estrogen produced elsewhere in the body. I was 96% ER+ so it is important for me. Here is a link:
http://www.livestrong.com/article/23846-estrogen-produced/
Also, my MO recommended taking Glucosamine and Condroitin to assist with mild aching. I switched from Femara to Arimidex and have had less aching. I also just switched from taking it at night to taking it in the morning and I have noticed less aching and better sleep, which I have always struggled with.
I saw a discussion about Vit. D a couple of pages back also - I get liquid Vit. D also from http://www.drugstore.com/, it is the Carlson brand. It has 2000iu in a drop.
On the mayonnaise discussion from a couple of pages back here is a link to a specifically soy and gluten free brand. It is the one that Gwyneth Paltrow (she uses the regular one) advocates in her cookbook.
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Special K
I just switched from Femara to Arimidex too. The femara made me ache something fierce. My hip , back and legs just felt agitated all day. So far the arimidex has been a god send compared to the femara. Lets hope it lasts!!!
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I have been taking A for a month now. The only se is restless leg syndrome sometimes, and aches all over. But, since I had those before from my arthritis, I can't really blame the A. I usually sit at pain level 3 daily. So it goes up go a 5 or 6 sometimes. I just take my Tramodol. I can't take anti inflamatories due to conflicts with another med. So pain is in the background anyway. So I am thankful nothing else showed up. Hope it stays that way. 4 years, 11 months to go! LOL
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lucky - I have yet to incorporate the Glucosamine/Condroitin but have noticed a lot less aching since the switch. I developed a very painful trigger thumb on my dominant hand on Femara that has significantly lessened on Arimidex. I have some stiffness but it really is minor and if I keep moving I don't notice it. I hope it is a positive switch for you too! I had degenerative disk issues at L4/5 prior to BC and Femara intensified that pain but it is better on Arimidex, back to annoyance levels only!
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Lago, very true and so far I have been told "its up to you" so given that, I will wait. I am in Wellesley, do you still visit often?? Thank you for your advice!!
SpecialK, Thanks for that info, I am surprised that you got BC after a ooph/hyst, but I guess as you say, it comes from other areas. Do you find that the glucosamine helps much with the aches/pains? I am taking Claritin (recommended by others in previous pages) and I find that helps. But am worried about the joints so the gluc may be a good thing.
I wonder if taking all these vitamins and pills are good for the kidney?? Is the liquid Vit D better for you?
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I have a question for those of you on AIs....have any of you taken clonidine, and if so how was it? I know it's a BP medication that can be helpful in controlling hot flashes.
Thanks, susannah -
B123 Wellesley, very pretty area. I was just visiting a month ago.
Susannah I only get some warm flashes and it depends on how much spicy stuff I ate. I'm sure if I didn't eat anything spicy (hot) I would never get a flash. So subtle though that no big deal… so I keep eating the hots stuff and don't bother with remedies.
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Lago, thanks for your input. I'd eat the spicey stuff too!
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My hot flashes have remained consistent from the time of my hyst/ooph - neither Femara or Arimidex changed them. Living in Florida is not helpful as mine seem worse in hot and humid weather. I probably average one every couple of hours - all day and night, severe enough to look sweaty, lol! I don't take anything to counteract them.
susannah - I have not been on the Glucosamine/Condroitin long enough to tell, and I had some Claritin so decided to start taking it about a week ago, so now I won't know which thing was beneficial, ha! My aching is not that bad so if neither work it is not a deal breaker.
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Special K, as long as it works who cares which one helped!
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susannah - I agree! It would be good to know so I could share the info, so if it does work I made try to stop one or the other as an experiment to see. Also don't want to take more things than I need, that way I can save the money I would spend on supplements or meds and buy more shoes!
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Yesterday would have been my 13th day on arimidex and during lunch after church, I realized I had forgotten to take it.
Since it has been known to cause insomnia and I always take it in the morning, I skipped it altogether yesterday, but took it early this morning. I feel like av young woman who missed her birth control pill, but I'm sure missing just one won't hurt anything.
Any thoughts?
Blessings
Paula -
Soteria from what I have read you did the right thing. If you miss a dose take it as soon as possible unless it's close to the next regular dosing time… then just take one at that time. You don't want to OD on ESD. It's not like if one little sperm gets away you can become pregnant. This is starve the cancer. One day of eating won't make it healthy if you continue to start the following day. At least that's the way I'm going to look at it.
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Lago thanks for the reassurance. I thought that was right but wanted to be sure. I have learned more since joining this forum in mid-August then I ever could have imagined. I always thought cancer was a Once-&-Done kind of thing. That you were stage 1,2,3,or4 and you were treated then was cured or not, but I had no idea of the risk of recurrence, or all the horrible consequences of it.
You ladies are such an inspiration!
Blessings
Paula -
Soteria Just be sure to check with your onc when ever you get advice. BTW you onc will ask you how many "servings" of ESD you missed so be prepared. This obviously happens a lot. I've been pretty good. Been late once (15 hours) but never missed in 1.5+ years because I take it in the morning.. Now my evening supplements I'm not as good about.
Yeah I too though you either die or you don't with this breast cancer shit and once you did your 5 year pentance you were in the clear. Never knew about recurrence but at the same time most women think that recurrence is more the norm with early stage… but it is not, especially after 5 years. You still can have a recurrence but it's a very low percentage. linky (Aug.2008)
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I took mine in the mornings too. I bought one of those 7 day pill dispensers and put it right on top of my underwear draw. Some days I couldn't remember if I took it or not (chemo brain?), so that way I could look and if there was still a pill in Monday's slot, then I knew I hadn't taken it yet. I only forgot a few times, but I would take it as soon as I realized. I'm sure it would haven been fine to miss a day or two, but I felt too creepy about skipping (although if I didn't take it until noon, I would take it a little later the next day, like at 9:00 instead of 7:00). Sigh!
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Lago, I just read the link you gave. As they did not study the risk reduction effect of taking anti-hormonals, our stats would be even lower.
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Soteria: I always keep an extra one in my purse, in case I should forget to take it before I leave in the am. It's the only rx I take, so keeping an extra one is just insurance. Haven't had to use it, though. For some reason, I just remember to take it with my supplements I take.
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I have to keep at least one of each of all my meds in my purse, I take a lot so I want to make sure I have them if needed. Since I have to take so many (morning load is 11 - without supplements) I don't forget it.
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I have one of these for the morning and one for the evening. Actually I have 8 of them. I fill them monthly:
Other options:
Just do a google search: "pill case on keychain" -
How cool is that?
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Lago, I used to use the monthly one,until I ended up in the hospital, and never got back in the habit. I should start up again. I tried a keychain one, it fell off do I don't use those for things I need. BTW, I have been on A for more than a month, and, I really haven't had major SEs, do most show up later, or can I relax a bit? Much love.
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Relax!
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ditto
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15 days on arimidex and so far no side effects except a little irregular, but that could be the diverticulosis, and is easily remedied. The back of my left hand sometimes throbs, but I was already starting to have some joint problems in that hand, so I don't think it's an Se.
On a good note, I'm sleeping better than I have in years.
I pray I don't get more side effects. I hear some ladies say they don't get them until months into therapy. I do take Claritin with arimidex every morning.
Blessings
Paula -
Moonflwr I didn't have any SE for the first 3 months. Then a little stiffness in the morning started. I have some stiffness but it's much less if I keep moving (which I do). While I prefer not to have this "stiffness" it's something I can deal with. I've been on ESD now for almost 19 months and have no plans on stopping. I have a friend that's on Lupron and the same ESD… she has a little stiffness in the morning then it completely goes away. She does have some hot flashes but that could be from the Lupron too.
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Moonflwr: Just "celebrated" my 2-months of being on anastrazole. I started getting hot flashes, but have subsided substantially. What I have noticed though is I have soreness in the joints of my fingers on one hand at night. What's that about? In the morning, they are fine.
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kjiberty my left hand is stiffer than my right. I assume it's because I move my right hand more. I get it in the morning but maybe that's because I take the drug in the morning… but I really think it's from the inactivity.
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Ok, thanks! I will quit worrying and just wait and see. I always have sore joints due to arthritis anyway, so I wouldn't know if Arimidex is adding to that anyway. I have to get both knees replaced too, both are bone on bone and had to wait til my bc was taken care of. Sorry, ill quit whining now! LOL actually relieved to know this seems to be going well. I mean I had a few minor flashes, a couple sleepless nites, a bit of short temperedness, but that was in the first week and not since, except for the minor flashes, but some other meds also cause those so I am not worrying about that either. oh boy, I must have hit the talk a lot button today! Sorry! LOL
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Moon, never apologize for "talking" too much. We are all here to listen and help as we can. BTW, where is Port Washington? I'm a former Neenah-Menasha gal myself. (long ago, LOL.)
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Chris, half hour north of Milwaukee on Lake Michigan. My daughter is living in Lebenon, PA and working in Philly.
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Here's an interesting fact: after my BMX last year, I was always cold. Freezing, in fact. I could never get warm.
Even when it was 110 degrees here, I'd be freezing in the air conditioning. Everyone would be sweating and panting and I'd be wearing a sweatshirt in an air conditioned room.
Even in the dead of summer, I'd have my electric blanket set to "high" until I warmed up.
(I remembered that this was the way it was when I started perimenopause 14 years ago.)
Then I started the Anastrozole September 5th.
Had one night of hot flashes, then started taking it in the mornings.
Now - the A/C doesn't bother me, I no longer have those "cold flashes", and the electric blanket stays off.
Could it be that the drug offsets the other condition? That would be sweeeeeeet!
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Blessings, I have the same problem, I used to be oh so cold all the time. Now I am on Zoladex (Lupron) and Arimidex and my hot flashes come on suddenly and I am sweating for a good 5 min. People at work will even say, my god.. you look SO hot! Lol.. I hate it but at the same time, it that is all I have to complain about, its OKAY!! I too have major stiffness when I wake up in the morning and if I sit to long, my lower back, my pelvic and feet but as I move Im ok..
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How manY prunes is a serving? I think the arimedex is affecting my digestion. I am also trying to do calcium but I've never done well with it, over the years I just dont like how it seems to slow down my digestion. My bone density was just checked before I started Arimedex, it was good. Going to try some liquid calcium my PA recommended. Funny, just as they are saying that calcium may not be that useful for bones in general, my MO insists on me taking soe. Sigh. However, I will try again. Ergo the prunes.
So far I am like nancyjac, stiff and achey in the morning. But not too much the rest of day. Almost 3 months of taking it. Hope that is all. I thinks doctors tend to minimize SEs, maybe they think we maximize them. -
I wish I could do prunes but they upset my stomach
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Try prune juice, or the primed come individually wrapped I forget the fancy new name now, but whatever they call a serving that's what I'd start with.
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Ruthbru says she eats 6 dried prunes, so that's what I tried. I love them, but 6 doesn't quite do it for me, so I'm better with 4 a couple times a day.
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HA...I bought prunes to help my bones except now I find DH and GD helping themselves to my stash!
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4 a couple times a day, meaning 8, or 4 total? I was fine the first two months but weird here on month 3. Who know what it's related to! Been taking colace every few days. Helping. Stiffness in am too which subsides as I move around though I have take ibuprofen a few times. Ah we'll, hope it stays like this, not worse. Meanwhile I am 3 mos post chemo and now various of my fingernails are breaking off quite low. So much fun.
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lisa....the study says 8 to 10 prunes a day...can take them any way you like!
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Have been on Arimidex 3 years of the 5 planned....Besides the effects of sexual dryness which was torture when we would try, i really wouldn't have many side effects but then about 3 weeks ago Oct 9, 2012 about four weeeks ago, I had a sudden bad leg pain and could hardly walk the dog, a day later I was admitted to the ER with Extensive Acute Deep Vein Thrombosis of lower extemity....Now on warfarin (blood thinner) have to be extremely careful, already fell once and am bruised like I was in a auto wreck....Will have new ultrsound in 3 months to see if my body has dissolved this....DR took my off Arimidex, since this could be a side effect....While in the hospital I was given CT to make sure it was not cancer caused and also Bone Scan and luckily those tests were negative...I am a little afraid of being off arimidex and am taking tumeric and trying to eat estrogen inhibiting foods...Any others out these with this happening or any advice...Thank you
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somanywomen....sorry you had to go thru that. I developed blood clots in my lungs during chemo and had to give myself daily shots of blood thinners (Fragmin) for 6 months. I was started on Arimidex because blood clots are not one of the known SEs. Tamoxifen has blood clots listed as a possible SE.
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Lisa2012 my fingernails/toenails are crappy thanks to Taxotere. Brittle, some still lifted still and a few of my toebeds ruined. It's not horrible but some of us don't have thier nails return to what they were before chemo. With nail polish they don't look so bad.
Blood clots CAN happen with Arimidex/Anastrozole but less common than Tamoxifen.
After chemo I had the terrible sexual SE. It took some time but I used Replens and Astroglide. I no longer have any pain and I don't even use the Replens anymore. It takes time. Remember if you don't use it, you lose it. Consider getting a vibrator to get things going again. Yes I am serious.
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Lago is right use it or lose it. And the relaxation can't be beat ! LOL
So here's some different type of relaxation, LOL
Sing this to " the lion sleeps tonight"
Arimidex, arimidex,arimidex, arimidex, in the city the mighty city, I cannot sleep tonight, in the city the mighty city, sleep won't come tonight.
LOL, that's what rolls through my head everytime I see the name arimidex! LOL. -
Moonflwr that is really funny.
BTW I have been having some minor sleep issues. I actually bought a sleep mask to keep the light out. It really does help. I just bought a new one that I love because it doesn't put any pressure on the eyes and has no seems: linky It was 1/2 price at Marshalls
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I do take an OTC sleep aid..it's the Walmart equivalent of Unisom. It's not Benadryl like so many others. I've taken it for years, even before BC. I also use a fan that has a steady hum. DH calls it my Boeing 747, but he's addicted to the fan too now. It's white notice plus circulation, and I use it both summer and winter.
Moonflwr do you take the arimidex in the morning? I take it about 7 am. Insomnia was one of my biggest concerns, but if anything, I'm sleeping better, and waking up refreshed. Of course, I'm not taking chemo yet.
My surgery is 3 weeks from yesterday. Grrrrrrrr...I so don't want to do this.
Blessings
Paula -
Lago, now try to get it out of your head! LOL its a bad earbug! LOL
I like those sleep masks. I have been using my sleep cap pulled down over my eyes, as that doesn't put pressure on them either. But those masks are cool! -
I pull my sleep cap over my eyes too! Sometimes earplugs, sometimes ambien, occasionally Ativan. I think Arimedex is not messing up my sleep, thank god. Still trying to figure out tummy and calcium. Going to try a liquid calcium from trader joes.
Love this board. It helps me have my secret thoughts and communicate as I try to get back in the saddle. -
Lisa I was using a fabric headband for a while over my eyes. My husband thought I was a little nuts. What's nice about these masks is the elastic in the back is softer than most and can be made longer because of the velcro.
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No prunes for me....I'm still on partial Optifast. What I DO use is Metamucil clear fiber powder in my shakes, so no problems in that department.
No insomnia since I started taking my Anastrozole dose in the morning.
I did start taking Calcium Citrate, Vitamin D, and Fish Oil at night.
I bought some Biotin, but haven't started taking it yet. I met a woman at a breast cancer organization luncheon who had lost more hair to Arimidex than she had to chemo. THAT got my attention.
Only have minor aches....I'm sure it's from not exercising. I do my best work in my water aerobics class, but it's held in the therapy pool at the local rehab hospital. The water is 94 degrees, and since there is a teeeeensy unclosed part in one of my incisions, my PS doesn't want me to take any chances. Neither do I.
Thinking about a treadmill....it's still 102 degrees here, with crappy air quality. I miss exercising!!!!!!
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Started Anastrozole on Monday, 10/1. Take it at 7:15 am. I've set a reminder on my cell phone so it beeps each day to remind me to take my little pill. So far only SE seems to be some minor leg pain. But not sure if medicine is causing pain or not as I've had knee and leg pain on and off for several years. I have picked up some store brand 24 hr allergy relief Claritan to take. Store brand has same ingredients but is quite a bit cheaper. I've only taken one so far and I took it at night. It seemed to work. Hoping that SE will not worsen. Been sleeping fine, no hot flashes, no constipation/diarrhea, no headaches, etc. If it continues to go well, I don't go back to oncologist until after Christmas for my first 3 month checkup. Keeping my fingers crossed.
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SherryH16... I wish you could exercise for me!! i want to do it but I am now working 11-12 hour days. I dream of being on the treadmill and sleeping at the same time.
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Lisa can you walk home from work? Can you take 15 minutes and walk at lunch? Even 30 minutes a day of walking will help.
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walk in place while watching the news, park farther away from the store when shopping, take the stairs instead of the elevator, go talk to the person down the hall instead of sending an e-mail. Get up 15 minutes earlier and do some stretching, crunches....whatever.....exercise, movement is one of the most important things we can do for ourselves both as far as quality of life and to prevent recurrence.
edited to add: with practice, I have perfected the art of walking on the treadmill while watching the news and reading a newspaper/magazine/book, sometimes opening mail...I have not yet tried to sleep while walking though
and when I am walking outside, I will make needed phone calls, and a few times, when I've needed to practice to make a presentation, I put my points on index cards, bring them along, and practice my talk while walking (I go on side roads, anyone who sees me must think I am a crazy lady talking to myself!).
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Today is the first day on Arimidex. Interesting change of events, since Onc said I'd be on Aromasin. Had the Lupron injection yesterday.
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How do they choose? Do all three (Arimedex, aromasin, femara) all have about the same reactions? do they come and go? I am almost done with 3,months of Arimidex. Stiff and achey in morning. Better as I get going, maybe an hour or so. Kind of tired feeling a lot but maybe would be tired anyway. Though formal exercise is just now coming back, (8 weeks pst exchange) I do walk all over my school many times daily. Should get a pedometer!
Had no SEs the first two mos, occasional hot flash. Red wine gaceme flashes a bad sleep sat night, however it often did that before BC. Sigh.
I have to find calcium that doesn't bother my stomach. Will try a trader joes one a friend recommended. Or a liquid one. Really supposed to take it.
Sorry for all the complaining. -
Yes, I would love to know the digestive enzyme! I took a Calcium Citrate tonight (Citracal) and will be positive.
I also am starting to do 30-40 mins on my treadmill. That gets me to break a sweat. Why does Arimedex take a lot out of you? I know I used to LIKE having estrogen in my body
, though I understand that post-cancer it is BAD for you. -
Lisa because your tumor is ER+ that means that it was "fueled" by estrogen. By reducing the estrogen it will hopefully starve any stray cancer cells that might be floating around before it sets up shop in another organ. At least that's my understanding/explanation in non medical terms. Arimedex "sucks" the estrogen out of you.
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I am blessed with wonderful sleep. Even better when I do a lot of exercise such as the long bicycle ride (50 miles) I did today.
Half way through the anastrazole. I will be glad to be done, but hardly the worst of fates.
When pressed for time, I exercise in the early AM. Then done for the day. I always slip in a mile or so walk later.
As for "keeping things moving along", I think the beans, carrots, beets, farro, peach, tomato and pepper should do the job just fine. I ate all this with tandoori-coated roasted chicken thighs. Yum.
I did a probiotic when doing chemo. But yogurt works just fine now. I used it a few weeks ago when combatting the creeping crud. All was just fine after that.
I really think that fresh food, sleep and exercise are the magic bullets here. I would do prunes too, but like mine stewed in brandy with a bit of turbinado sugar and heavy cream. From the French "tarte aux pruneaux". No need for pastry here. Just served in a bowl works fine.
Anyway, off to bed as a long day tomorrow, plus a lot of cycling. Plus work.
And, of course, a feast for the gods for dinner. - Claire
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Claire, those prunes sound delicious...
Lago, I found the same sleep mask at Bed,Bath & Beyond. Having the eye area hollowed out really helps. I guess I blink a lot trying to fall asleep and the other type of flat mask bothered me.
Does any one know what affect antibiotics have on Arimidex? I know they can reduce the effectiveness of birth control, which are hormones...Would taking an antibiotic hurt Arimidex effectiveness? I have had to be on one off and on a lot this past year because I kept getting sinus infections. Just started worrying about this one.
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Lee I had to be on antibiotics when I had my exchange surgery and nips/fat transfer/revision done. The only drug I was on was the Anastrozole, and my PS of course knew this, it didn't seem to be a problem.
And why would someone be taking birth control pills and be on an AI? If you need birth control pills then the AI isn't going to work for you… one would be prescribed Tamoxifen instead.
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Lago, I think she meant they are both hormone type things and was just wondering if abx did the same thing to arimidex as to the birthcontrol pills.
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Yes, that is what I thought too. Antibiotics do not alter the effectiveness of anti-hormonals.
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ruthbru...have you read any studies about Boron (the element found in prunes)? Interesting findings altho one study does say it has the same effect as estrogen. I am still eating them but confused. Of course the studies were straight boron...very good against prostate tumours etc.
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Yeah, I decided not to read the studies; because for almost everything I have ever done, there is a study to contradict it, then I get freaked out and then there is another study saying the first study is right after all. SIGH! I know they are good for the bones, I know they are good for the digestive system, I know they help protect against colon cancer.....all this with one serving a day.....which I wouldn't think in that low of a 'dose' could make a heck of a lot of estrogen.
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ruthbru...I agree entirely...thing is now that hubby read that about the prostate, can't keep him outta my prunes!!
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schatzi tell hubby to eat cooked tomatoes
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oh we eat them all the time....I pretty well use tomatoes, onions and peppers in almost everything.
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What no garlic?
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Oh yes...indeed....garlic as well !
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Garlic cures everything! Colds, bronchitis, strept throat, bunions, erectile dysfunction, it even raises the resale value on your house. Lol
Really, I couldn't help myself. I'm in an ornery mood today. But, garlic really is an amazing herb. A little onion, & garlic in chicken soup does wonders for you when you're feeling under the weather.
Surgery is 2 weeks from today. I REALLY DON'T WANT TO DO THIS!!!
I've been calm and upbeat thru this whole diagnosis, but I've also been on hold for 3 months since dx, so it's been easy to pretend it doesn't exist.
Thank you all so much for your encouragement, your tips, & advice, for just being here.
I love you all
Blessings Paula -
Jo I've been curious about that also. Thursday will make one month for me on arimidex, though, so far, I've had no other treatment.
My cholesterol has always been excellent, even though, I've always eaten red meat, fried foods, & butter. That's right, BUTTER!!!
But, I can't help but woder if arimidex will change that.
I'm interested in hearing from anyone else who knows about this too.
Blessings
Paula -
Have you tried Niacin? My cholesterol has always been 'iffy' (genetics). I did not want to go on a statin, so long before arimidex I started using it (under doctor's supervision and every 6 months blood work). We had to play around to find the right dose, and I did need to up the dosage while on arimidex (don't know if it was arimidex, age, or the fact that I lived on mashed potatoes with butter and cheese during chemo), but have managed to keep it under control with Nicacin only. If you try it, don't take the 'no flush' as it is not as effective, I use the 'Slo-Niacin' (releases slowly into the blood stream instead of all at once, so I have never had trouble with flushing), which I find at Wal Mart.
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Ruth that's good to know. I have a 24 year old son who is HIV positive. The 3 anti-retrovirals he takes have caused his cholesterol to skyrocket.
I'll tell him about the niacin.
Blessings
Paula -
I have such high HDL that even with a higher than "recommended" total, I have an extremely low risk of heart disease. I have stellar triglycerides too. I just had butter on my crumpets, and am drinking my high octane tea with whole milk.
I love fruits and vegetables, so eat tons of those. Huge salad last night plus kale w/garlic slivers. This was with my oven-baked tandoori chicken thighs and roasted potatoes.
That said, I don't walk away from a piece of delish pastry. But I don't make myself cakes, tins of brownies, or pies. Because I know all too well where that one would be headed. (I have my grandmother's recipes, and she was known throughout the county for her wonderful baked goods.)
I have managed to keep my weight constant while on Anastrazole. I gained a bit last year, but the cause was more "trashed ankle" which meant that moving HURT. I cycled and did my walks anyway, but I know I didn't do as much plain running around.
It came off with all the summer cycling, and I want to take off another 8 pounds or so. Not urgent, but that is my best weight.
The one I noticed was liver function (think AST) was up if I did a blood draw immediately after taking Anastrazole. But fine, if taken when fasting. - Claire
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My cholesterol was always fine even though I ate a lot of red meat and dairy. It hasn't changed afater 19 months on anastrozole, but then again my diet and exercise sure have. I'm not quite vegan, but I've eliminated red meat, processed foods and dairy, I walk or bike just about every day, and have an hour exercise class three days a week. Maybe that has just balanced a negative effect of anastrozole, since my blood pressure has hardly budged despite clean livin' and weight loss. I do have a bit of nausea and fatigue, but nothing that really bothers me.
On the other hand, has anyone heard anything about positive side effects (besides kicking cancer or holding it at bay)? My husband and I had both picked up a toenail fungus while on vacation in August 2010. Within weeks of starting anastrozole my totally black big toe nail had sloughed off leaving healthy nail below, while 18 months later my DH is still painting his toenails (looks really cute!) with anti-fungal. Maybe it was a coincidence, but I'd be interested in hearing if anyone has had similar experiences.
Janet
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My favorite positive Anastrozole side effect is being able to sit in an air conditioned room without a sweatshirt on. NO MORE COLD FLASHES!!!!
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Blessings,
You know, I hadn't noticed that, but I've had the same experience. No more icy fingers up my backbone! I never had hot flashes, even during menopause and also not since I started anastrozole, but I always figured cold flashes weren't as bad. At least you're not dripping with sweat!
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Yes, always check with your doctor before starting even an off-the-counter medication, and then monitor to see if it is actually working and not causing other problems.
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Has anyone else experienced random itching while on Anastrozole? Started on September 19, 2012. Five years of itching seems like a long time. Does anything help?
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Mommacain are you taking Claritin with the arimidex? It's an antihistamine, so I'd think it would help the itching. I've only been on it a week longer than you, so I haven't experienced any itching, but I take my arimidex between 7-8am and I take Claritin at he same time.
Blessings
Paula -
nope...no itching
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mommacain - veteran itcher here. It took me forever, but I finally narrowed down what was causing it. It wasn't medication.
Itching IS listed as a side effect of Arimidex, but as a rare, severe, allergic-reaction type of response. If you have THAT kind of itching, you need to contact your doctor, or go to the ER, right away.
If your itching is - as you say - random, then the best thing to do would be to keep a journal.
List the day, the time, and the kind of itching. Is it topical only? Is there a rash? Or does it seem more "internal", where nothing shows on the surface. Is it widespread throughout your body, or only in one area?
Have you changed any products lately that touch your skin? Laundry detergent, bath oil, soap, lotion?
Does it occur when you wear certain types of fabrics?
What did you eat before you ate? In my case, I got terrible itchies from eating anything with preservatives: MSG, sulfites, sulfates, nitrites, nitrates.
Do you have any other kinds of allergies? Pollen? Dust? What about the air quality where you live? Good or bad? Have you ever been diagnosed with asthma?
Is there anything in your environment that might set you off? Air fresheners? Other peoples' perfumes and aftershaves?
What I eventually learned was there was a "bucket theory" to allergic reactions. Let's say one evening, I go out and prune bushes in my yard. I forget to shower and wash my hair that night, so pollen gets on my pillowcase. Just a drop in the bucket - no reaction.
The next day, I go for a brisk walk, ignoring the fact that the air quality index is in the "unhealthy" range. Another drop in the bucket - still no reaction.
Then - unbeknownst to me - i eat something at a potluck that has been made with meats preserved with nitrates and nitrites...and BOOM! Major itching, all over my body.....but no rash and nothing visible. The "bucket" has overflowed with triggers to my system, and it reacts.
I can usually take an Atarax (prescription antihistamine) and I'm o.k. If I take any antibiotics, I usually have to take it with an Atarax or a Benadryl chaser, but that's per my doctor's orders.
I would definitely let your MO know about this reaction....
p.s. OH - The other thing that caused me to itch was dry skin. Lack of estrogen will definitely dry your skin out.
I switched antibacterial soap in the shower - from Safeguard, to Cetaphil antibacterial bar soap, and I use a soothing body wash made by Cetaphil. And after every shower, I lotion up - again, with a Cetaphil lotion recommended by my dermatologist. (Haven't checked on the paraben content....I got this stuff before my dx.) Many women use coconut oil as a moisturizer.
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I use ceraphil on my face since high school. I use 2 parts Dove body mixed with 1 part hair conditioner (sauve cause I'm cheap). Keeps my skin pretty moist. Of course in the dead of winter I might need some moisturizer on my body. I always moisturizer the face.
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It has been a while since I have been on this site. Just wondering if anyone has ever had a slight fever due to Arimidex. Just today I felt like I might have a cold coming on and felt a little warm. My temp has gone up to 99.9 but right now it is 98.9. Reading the side effects, it says to contact the doctor if fever occurs. I would like to think it was simply a cold developing but can't make those assumptions anymore. Have a slight sore throat too. I'll give it another day then call the onc. office if it continues. Thanks for any response. Allagashmaggie
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Hi Everyone,
It has been a very long time since I stopped by any of the boards. I have enjoyed reading your comments. I started Anastrozole in 08/2010. I've had cold flashes, joint pain, mild hot flashes. Most recently, I've been told that a recent x-ray shows some spinal stenois. Pain started in my lower back, but also seems to be on the left side just below my waist. Has anyone else experienced this while on Anastrozole/Arimidex?
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I saw the BS today. Last time before surgery on the 22nd. He told me to stop the arimidex until after treatment. I was only on it anyway, because we were waiting for insurance to kick in before surgery.
I wasn't having any real side effects, but just started it sept. 11.
Blessings
Paula -
That is interesting that he told you to stop because of surgery. When I had hernia surgery awhile ago, the surgeon said there was no need to stop arimidex prior to surgery.
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Hello, all. New to this thread. Am 11 month "veteran" on anastrozole. Surprisingly comforting to hear the conversations, and avoid the only-me questionings that come so naturally. Fist time I've heard anyone mention cold flashes! Mine were semi-frequent during our recent 106 degree summer, so an odd blessing in disguise. Now they seem gone... In July my surgeon was concerned with fatigue, and suggested magnesium supplements--250 mg twice daily. She said anastrozole is known not just to leach calcium, but to rob magnesium as well... Feeling better than two months ago--may be worth a discussion on next dr. appts.
I wish everyone the best, and am happy to have found compadres in this journey.
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Cold flashes are part of arimidex? That explains a lot! I knew about the hot flashed, but not the cold. I'd be wrapped up in a down throw, wearing a fleece jacket over my sweater, and a hat on my head. If I had mittens near my chair, I'd be wearing them too. I learned to put on the fleece jacket backwards, ie, hands in the arms so the back of the jacket is on my chest, so I can take it off easily when a hot flash hits. who'd a thunk!
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Think of all the extra exercise you are adding to your day; putting it on, taking it off, putting in on, taking it off!
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Skittle - I forgot to add magnesium back into my supplement intake - thanks for the reminder!!!
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cold flashes for sure...I see my MO today...I have a loooong list of questions...hope he isn't in a hurry!
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About 4 weeks ago, I had a sudden bad leg pain and could hardly walk the dog, a day later I was admitted to the ER with Extensive Acute Deep Vein Thrombosis of lower extemity....Now on warfarin (blood thinner) have to be extremely careful, already fell once and am bruised like I was in a auto wreck....Will have new ultrasound in 3 months to see if my body has dissolved this....DR took my off Arimidex, since this could be a side effect have been on 3 years,....While in the hospital I was given Body CT to make sure it was not cancer caused and also Bone Scan and luckily those tests were negative, I did however have something called Factor V Van Leiden gene in bloodwork, apparently inherited from one parent which gives me an 8 % more chance for blood clots...I am a little afraid of being off arimidex and am taking tumeric and trying to eat estrogen inhibiting foods...Any others out these with this happening or any advice...Thank you
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somanywomen my mom had blood clots. That's why I didn't want to go on Tamoxifen… the incidence of blood clots is worse on that. I really hope this is an anomaly and not caused by Arimidex/Anastrozole/ESD for you.
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somanywomen & lago--the sheet I received with Arimidex listed blood clots as an SE.
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somany...while I was on chemo, I had blood clots in my lungs...chemo caused so said the hematologist. I gave myself Fragmin (blood thinner) for 6 months. When it was time to start the antihormonal, I was given Arimidex as opposed to Tamoxifen because the chances of blood clots were low. I am surprised you were taken off the drug but I suppose they are being extremely careful. It would depend what cause the DVT's I guess. Do you know the % of ER+? Perhaps it was low enough that after 3 years it was enough to help? Just a guess on my part.
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Ruth I'm having surgery a week from Monday, on the 22nd. Then I see the mo about 10 days later. I'll ask her if she wants me to continue the arimidex. They had put me on it originally, because surgery was on hold for several weeks, and they wanted me to be getting some kind of treatment.
Has anyone had arimidex at the same time as chemo?
Have a Blessed Day
Paula -
Here is a good SE of arimidex that I didn't realize until today when I woke up with two big pimples.......I had no pimples for 5 years!
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Junif I don't doubt its a SE but less common than Tamoxifen. Fluid retention is an uncommon SE too and I have it (taking small amount of diuretic).
Schatzi I'm sure they are taking somanywomen off the drug because if she gets a clot in the wrong place you could have a stroke and die! There is a chance she won't recur even if she never took the antihormonals and the risk of a clot killing her is much higher if its from Arimidex.
I started Anastrozole after chemo.
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Blessings-- Love your grinning kitty! I love, too, that bc and anastrozole and, and... do not alter our senses of humor! Strength of spirit and laughter help us all. I was amazed at the difference the magnesium made. Had no clue it was such a vital piece to the puzzle.
Wishing you good days. :-)
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Ruth~ LOLOLOLOL.., so true!
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Greetings ladies! I have been wanting to join an Arimidex thread and this one looks much less daunting than the other very long one. I will start reading here from the first page and hopefully catch up.
I have been on Arimidex now for 11 months. Actually the generic form Anastrazole. In the past few weeks I have noticed a lot of problems with both my knees and my right hip. I also have some wrist and hand pain, but not often. The worst part is my knees and right hip. I am recovering from spinal fusion on my neck. I have degenerative disc diease and had a fuse done between C-4 and C-5. I was doing gre4at (surgery was 6 weeks ago) but started having neck pain again. I saw the surgeon Thursday and they did fresh x-rays. All the parts are in place so everything looks good. The x-rays did reveal some damage from arthritis. Also the doctor thinks that wearing the collar for so long has caused some of the muscles to tighten. So, I start PT for that on Monday.
Now my knees are giving me fits. I have been trying to move around and walk as much as possible. Of course it is always worse after sitting or lying down for any length of time. I am up and mobile most of the time, but that getting up is difficult. My knees were perfectly fine a year ago! Grrrrrr.
I have some hot flashes but really bad night sweats. I sleep in just a very light cotton t-shirt and cotton capri bottoms. I keep a spare shirt right next to me on the spare pillow! I have to get up and change almost every night.
I will be very interested to catch up on here and look forward to sharing stories!
Hope everyone has a wonderful day.
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I have been taking anastrozole for six months. For the first five months, I didn't experience any particular problems. Last month my pharmacy said that the anastrozole in my new refill was from a different manufacturer that what I had been taking before.
I now have noticed increased knee and hip pain, and much worse hot flashes than I had before. Moreover, my hair has started to fall out again. (This had not been a problem for a few years.)
I will mention this to my MO when I see him in two weeks, but I have no idea which manufacturer's anastrazole I was taking before.
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Fem your pharmacist should be able to tell you who the previous manufacturer was.
Blessings
Paula -
Hi Jo, long time no see...you know I had really bad liver damage from the chemo..and I have high cholesterol ..I started taking zocor years ago when I was on arimidex..but we started with a really low dose and worked up..they tested me all the time but I was OK with it..now I have been finished with the arimidex since 2006, and still on the zocor, it still works for me anyhow..
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FemTenor, I thought I noticed a difference when I had a change from one anatrozole manufacturer to another. I asked my pharm about it and they said they get different brands from time to time but if I wanted a specific one, they would order it for me. So that's what I did and I've stuck to the same manufacturer now. (Teva) I'm sure the active ingredient is the same in all of them, but fillers can be different, so you might want to see if you can go back to the one you liked.
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JO-5 - In 1982, I had Serum Hepatitis (HepB).... my gastroenterologist later told me that I was the sickest patient he ever had who didn't die
. That was the year I started paying attention to my liver, which was severely damaged.Fortunately, the liver is the only organ in the body that is able to regenerate itself. Eventually, my enzyme levels returned to normal. When my cholesterol levels went up about ten years ago, I begged to try something natural before I took a statin.
I tried Red Yeast Rice, and had no side effects from it. It did actually work, but I later found out that it is a natural statin (in fact, that's where pharmaceutical statin drugs originated) and could have the same side effects as a prescription drugs, including elevated liver enzymes, muscle pain, and yes, nausea!
Eventually, I went on Zocor, with regular monitoring of my liver enzymes. I was on it for years, with no change in enzyme levels.
Last March, I went on a liquid diet for four months (medically-supervised, 960 calories a day) at Kaiser. They took me off ALL my meds. In July, we started adding back foods, using the American Diabetes Association guidelines. I had a temporary spike in my liver enzymes a few weeks into the fast. They said it had to do with a sludgey gallbladder and the trauma of such a restricted diet.
Now, all my labwork is completely normal.
I take only Synthroid and Anastrozole, down from the DOZEN prescription meds I used to take daily.
I did lower my cholesterol (and horrifically high triglycerides) through diet and exercise.
Even though your RYR is not a prescription med, you really do need to check with your doctor, as well as have your liver enzymes checked. RYR can have the same effect on your body as the statins.
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Ladies - yesterday I happened to watch the Dr. Oz show, and saw Andrew Weil talking about his Anti-Inflammatory diet. I was especially interested because inflammation is at the root of so many of our ills today.
The second part of the show was devoted to chronic pain, and Dr. Oz gave 7 solutions for managing pain that were easy to do.
Here is the link to Friday's episode:
http://www.doctoroz.com/episode/dr-andrew-weils-anti-inflammatory-diet
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3:06 AM Mountain Daylight Time. Does anyone else have trouble sleeping?
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Yes, slept 4 hours, for which I'm grateful, but up since 3:30.
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Has anyone quit their inhibitors earlier than prescribed? If so how long and how are you doing?
I am two and a half years of five and quit my Arimedex. I don't want any more cancer inhibitors that causes you hair to be thin. My hair was thin before chemo, lost all of it and before I started Arimedex, I had beautiful thick lashes and hair coming in. Now I am almost bald again around the temples through the crown and I have two and a half more years to go, I would be bald then and back into a wig. I don't want it.
I had eight chemo treatments and three cancer cells in my thyroids removed as well as a double mastectomy. An PET Scan done before my chemo and again after my chemoine. My friends are worried about me, but I am single and I do not want to go through a wig again and hair so thin, you can see the roots throughout the crown. I prefer to leave it in God's hands now.
I have finally fell in love with an old boyfriend I dated in Junior High, after eight months of telling me all the love you, marry me, hang in there..........then off he went, like men do, love and leave you. He was pouting about how he was so stressed, when he came into my life and never knew what I had to endure before he came. I trusted him, because we had history together. I am still hurting after he left four months ago, cutting me off like a knife and running away.
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Susannah I am going to once again try to fall asleep. Sigh. This gets old!
Hope I have only taken Arimidex for 11 months. I am sure a lot of people consider going off the meds. I know it is not an easy choice to make. My hair is falling out and thinning terribly. It is so dry too. I am not fond of this S/E at all! It sounds like you have been through so much already. I sure understand wanting to stop the meds. I hope things begin to look up for you. Hang in there.
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Try Nioxin shampoo and conditioner before you throw in the towel.
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ruth...I am thinning too...do you know any particular brand and would WalMart carry it? We don't have many of the stores you have in the U.S.
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I take Biotin but for some reason lately my hair and nails are really suffering. My nails are so thin and they peel now. If i can get them to grow they snap and break so easily. I am not giving up and will stay on the Anastrazole. I have four years left. I hope my hair lasts that long.
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I take Biotin hoping it helps my hair and nails. Both were not so great before bc anyways. I haven't tried the Nioxin yet for my hair but I have stopping washing and blow drying it every day. I think that is helping it.
schatzi, I saw Nioxin on Amazon.com.
hopefloats4, so sorry to hear what happened. As if bc wasn't bad enough to deal with..you've had to deal with a broken heart. I agree with Ruth about don't throw iin the towel yet on the arimidex. You mentioned your thyroid. If you take meds for that maybe they need adjusting? Hang in there.
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Lee7...thanks but I googled it and we supposedly can buy it OTC in a local drugstore. Will check it out!
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Lee I always washed my hair daily, just part of my routine. I no longer do that either. So much falls out when I wash and comb it out that it depresses me. I am doing my best to keep it neat without daily shampooing. I do think that helps as well. I try to keep lotion on my hands. Moisture really helps.
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schatzi, just curious, do you still have Zellers around? or did Walmart replace them.
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Might be a good thing to have your vitamin D levels in your blood checked. My doc likes it above 40. Mine was low so I started taking Vit D and my hair and nails got much better.
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I use Minoxidil (women's Walgreen's brand) on my hair since chemo ended. I swear if I had not I would be losing hair. My hair is still better than it was before chemo. I lost a little in the temples but not much. I've been on ESD (estrogen sucking drug/anastrozole) since March 1st 2011
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Lee...we still have Zellers for the time being BUT they have been bought by TARGET...some will be closed and the others changed to Targets next year. WalMart opened here after they bought WoolCo.
Walmart is a big thing here enlarging the stores to have groceries etc. which they didn't have in the beginning. I am a Walmart fan
Love watching the Walmartians LOL
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Wow, I remember shopping at Woolco. Guess that really shows how old I am. LOL... watching the Walmartians. I think they filmed some of the funny walmart people youtube videos at my local store.
I get my Vit D at Walmart, great price and I know it works. My level was really low to start and now I'm in the 60's. Maybe that has helped my hair and nails too.
lago, do you have to use minoxidil every day? D you use it with shampoo or does it replace your regular shampoo?
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I use it everyday. It isn't a shampoo. I use the provided eye dropper and put drops on my scalp and work it in after I wash my hair. You are supposed to do it 2x a day but I only do it once. If you want hair to grow I would do the 2X. It can take 3-6 months to start seeing hair growth.
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I loved Woolco. I think it was my favorite! What's it been? Like 35 years?
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It sounds like you don't have to wash your hair each time if the directions say 2x a day. So I might try it just along my hairline to see if it helps. I already have a large forehead...I don't need it to get any bigger!
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You don't have to wash your hair each time but the reason why it's better when your hair is wet is so the product won't be absorbed as much by your hair. Make sure to rub it into your scalp.
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Soteria...I came back to Canada in 1992 and Woolco was still around...think it was a few years later that they all disappeared. Not all were turned into Walmarts ...some just closed forever. Some Zellers will just be closed as well.
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Schwatzi in my area, central Ohio, they closed Woolco in the 70's when K-Mart came in so strongly. I didn't know they were still in business that long. I'd have traveled to Canada to find them.
One of my closest friends is from Comber, Ontario. He's lived here for about 27 years, but his parents & siblings still live in Canada. He goes home to visit 3 or 4 times a year, and his parents who are in their 80's winter in Fort Myers Florida ever year.
Blessings
Paula -
I have found Nioxin at TJ Max and Marshall's stores. There are different numbers for different hair types. I bought shampoo and conditioner #4 for chemically treated hair that is noticibly thinning. I like it so far, but it's only been about a week and a half.
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Thanks everyone for the suggestions. I know that ignoring it doesn't help. No enviromental changes I can pin point. Call into doctor.
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I was on Minoxidil for almost 3 years and it didn't help at all. My hair is falling out even faster now than it did at the beginning. I'm 3 years into Arimidex and I think I'll be totally bald within 2 years. I'm already at a point where I have to wear a hairpiece - it's devastating. So when I couldn't sleep last night - turned on the tv and The shopping Channel and they were selling a laser comb that is supposed to help prevent hair loss and get it to re-grow. Ridiculously expensive. ($395) They say it works 90% of the time. It was 3:30 a.m. I ordered it. Put it on monthly payments. I'm desperate. But I'm afraid to give up the Arimidex. This sucks.
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hrf- so sorry the minoxidil didn't work for you. It just seems some products work for some and others they don't.
I started reading reviews for both minoxidil and for nioxin on amazon and sure enough...reviews were all mixed. great to awful, so I guess all youcan do is try one and see. -
I ago, I just saw this post and coincidentally I just saw my onco today. He said that the symptoms build and get to be their worst by 6 months. That's where I am now. He said usually by a year they aren't so bad. I didn't realize that and it gives me hope that I can persevere. He also said I should get fish oil. It will relieve the symptoms. No one has mentioned this before. He said it should be a special fish oil that watches for mercury.
When I went to sloan, recently, the dr said to switch to aromasin but that I may not be able to tolerate any anti hormonals. I thouight that was scary so I'm glad to get some new options.
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Anyone have shortness of breath?
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The thinning hair worries me as I have already lost so much. I have only been on Arimidex for 11 months. hrf...like you I worry that I will be bald by the time this is all over. I really do hope the laser comb helps. Something has to!
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I'm going to finish my anastrosal in December. Is it easier to lose weight after going off it?
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yes, sunaimer
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not for me....but could it be the dozen cookies I ate last night, or the pumpkin creme brulee Friday, or the turkey and mashed potatoes/dressing/gravy on Sunday?
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ruthbru.............naaaa it's the prunes! LOL
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My doctor says the overall number doesn't really matter at all (unless it is way out of wack, of course); it's the ratio that matters. If your HDL is high, your trigs are good, and your ratio of HDL to LDL is good; you should be fine, and it is something you probably don't want to mess with.
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So what is a good ratio?
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I've been on the Arimidex now for 4 years. I thought I had gotten used to all the side affects, but this past 6 months have been terrible for me. The sleepless nights and the night sweats are enough to make me dread going to bed. I've tried every sleeping pill from Abian to Trazadone and I just stare at the ceiling. The bone pain has gotten worse, especially in my back. It seems I can't do anything longer than 10 minutes and have to move on to something else. My doctor finally prescribed the hydrocodone, but it barely touches the pain. For the past years, I've been ok with pushing through it all, but lately, I've really considered going off it. When I asked my oncologist, he said he wanted me on it for life as he "didn't want to mess with a good thing." But I don't see the point if my quality of life is at the miserable level. Have any of you gotten to this point?
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Nelia: I feel so badly for you! Such decisions. I can't believe your MO wants you on it for life! I know many are recommending 10 years, instead of 5.
Timbuktu: I hope your MO is right. I have been on it for 3 months and I feel more and more achey. Trying to ignore the symptoms. Don't know about my bloodwork for another couple of weeks when I go for my 3 month checkup.
Yes, I have problems sleeping, but no more than I did before all this mess.
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Hi All--been lurking around this post for awhile. I start the Arimidex on Nov. 10 after my Rads end. I have the drug and have read on the really exciting SE that can occur...but have a lot of questions for those of you with experience!
--did your MO's order any tests before you began? (don't like my MO, but having trouble finding one anyone here likes!)
--what is the claritin for?
--is the hair loss/thinning pretty prevalent and is it to the point of hair loss with chemo and does it stop after you go off the drug?
--is there anyother advice you have for someone just starting?
Thanks!!!
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I would take it just like you take any other pill, and then go out and live your life. Most people do not have bad SEs. It's natural that people who do have problems are the ones talking about it, the rest are just out going about their day.
edited to add that some people take Claritin (not Claritan D) for aches and pains. I never had any problems with my hair once it grow back from chemo. Most people don't.
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Have had a headache almost daily since starting Arimidex at the end of September.
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I have had that also.
Gayle
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can't tell which is giving me the headaches, Lupron or Arimidex since started them within 24 hours of each other.
i'm assuming fatigue is one of the se's too. not even a month on it. of course, it could be from lack of sleep dealing with the headaches I get during the night too as much as during the daytime.
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I just finished 33 days of rad sept 7, had a lumpectomy one month before that, stage 1 ductal invasive, took two lymphs, no lymph node involvement, oncotype score 16. My surgeon started me on Tamoxifen. I can't take it, se's were horrible, bad night sweats (I mean I'd soak the bed every night) and I was more than moody...I became mean inside, bitter, hateful, and couldn't speak because I was afraid of what would come out....so, my surgeon put me on arimidex yesterday...well I hear it raises cholesterol, and he didn't seem to care. My cholesterol was total 300 in december last year, watching my diet I got it down to 276 in april. I can't take statins, because I'm allergic to them, and have tried all bile blocking meds (non statins...) can't take them either. I'm just at a loss. The surgeon just gets upset saying that if I don't take it my cancer has a 20% return rate. Take it, and it falls to 10%. I say there is no guarantee. I have a friend who had the same stage and cancer I had (hormone induced, positive 99.9%), took her 33 days rad, and 5 years of tamoxifen. 5 years after stopping tamoxifen (last month) she had a double mastectomy because of cancer...Is it really worth it putting up with 5 years of not being able to move because of the pain, the sweats, being the bi**ch from hell, and possibly dying of a stroke with high cholesterol in the hopes that my cancer doesn't return? I just can't see the risk paying off here. Doctors just get upset and say take your medicine. I am only 53, 5'5, 120 lbs., a teacher, mother, wife, and I don't want my cancer to come back, but I don't want to die of heart failure or stroke either. What are ya supposed to do?
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NPR, I am so sorry that you are going through all this. Sounds to me that you might want to consider another doctor. Some of them just want to "push pills". I told my oncologist that if I had too many side effects that I would stop taking the anastrozole. So far, (started the 16th of August), I have the so called normal se's of hot flashes, irritability, some weihght gain, some thinning hair, and of course the joint aches! So far nothing I can't handle.
It isn't easy, but I believe that "quality of life is extremely important. I am blessed that I am 66 and retired. My children are grown, but I have grandchildren who I want to be around for. But again, what good is medication if we are unable to function. The doctors cannot really predict if or when the cancer will come back. I think it is an individual decision whether or not it is worth the risks to maybe stay the cancer.
My prayers and lots of hugs are with you. Hang in there.
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Finally someone whom has experienced difficult SE from Arimidex!
My joint bone pain has been so draining. I started January 1st, 2012. It took a month or so but when the bone and joint pain started it hasn't let up. I have the stick joint fingers and can barely walk in the morning! I know what it looks like to my husband! I appear to be in my nineties. I walk and swim in my pool as often as 5 days a week. True for me as the others.....once I'm up and moving I feel better but by 3:00 I'm drained from pushing myself, whe I sit down the stiffness hits me all over again. I take Mobic and occasionLly enjoy prescription pain meds......they offer the most relief.
Blessings to you,
Lorraine -
NRP....so sorry you have so many health issues. But you have a supportive group of ladies here to help you through.....no matter what your choices.
IMHO, you could start an AI and see what happens. And switch to a more sympathetic doc, if possible, and get your cholesterol checked frequently, again, if possible (not sure how insurance works on "us" wanting tests, not the insurance policy.) Fortunately you can stop an AI without problems.
There are some natural ways to lower cholesterol, too, even using certain foods like oatmeal and some butter substitutes. You probably know about it already, but can you talk to a nutritionist? They can help with the nondrug ways to control high cholesterol. I do know some people just have it naturally, no matter how well they eat. Sounds like you are knowledgable, so maybe you are doing everything already.
best wishes....
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JO-5 I am on meds for high blood pressure already so the only change has been the Arimidex. If the SE's get worse or become intolerable I can try a different AI.
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nrp - I'm so sorry you are going through all that. I had the exact same talk with my MO when she prescribed Anastrozole. We went around and around....
I had SO many pre-existing conditions, I knew I'd be screwed by the SEs of the AIs.
But I managed to get some of my other conditions under control before starting the Anastrozole (high cholesterol, severe fibromyalgia, joint pain, etc.) and I only agreed to try it as long as she understood that my quality of life was more important to me than the length of it.
We had a very good talk, and since I was willing to try it her way (with meds) to see what happened, she was very willing to say she would be the first to yank me off the drugs if they impacted my QOL that badly.
I started the Anastrozole September 5th.
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Blessibgs, how are you doing with your anastrozole so far? Well, I hope.
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The only test that was ordered for me was a bone density. Since it's more radiation I just haven't gotten around to it yet.
My onco recommends excercize as the cure for all my ills and i'm sure he's right but I'm having a terrible time getting up the energy to fight the pain! I take a nap every day, something i never did before.
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My onco prescribed fish oil capsules. Unfortunately my chemo brain has forgotten to pick them up all week! He said to make sure they are the kind that don't have mercury. He thinks they will help with the pain.
He says the pain is from nerves getting more sensitive, that the joints are not being damaged. I find this really hard to believe.
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I switched to femara and the pain is less but still not great. My onco said arrimidex is the worst.
I read somewhere that people who get a lot of pain have a good prognosis. I have no idea if this is true or not but I'd like to think it is.
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Galsal - I would talk to my doctor about the headaches, if it were me. Good luck and feel better.
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Plannning on that Hortense. See the Onc NP on Thursday. Picked up some Aspirin to try for the headaches, see if it works better than the Tylenol.
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Susannah - I'm doing really well, thank you!
I have to be careful to not attribute every little ailment I get to the Anastrozole.
I had a killer headache the other day. Well, my allergies were out of control. Got them settled down and the headache went away. I had really bad joint pain in my fingers, but I've had arthritis in my left hand for ten years. I had been doing a lot of grasping and pulling actions with my left hand, and it acted up. I felt kind of queasy for a few days, but everyone I knew was getting the stomach flu.
So when I don't feel well, I try not to automatically say "It's the Evil AI!!!!"
I'm 61 years old. I'm going to have off days, sick days, and tired days, with or without the estrogen-sucking drug.
So yes, I feel like I'm doing well! And you? Well, I hope!!!
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Hi, all. I hung out for quite awhile on Lowrider's long-running Arimidex/AI thread, but I haven't posted on this thread yet. Here goes....
I've been on Arimidex/anastrozole for almost 4-1/2 years. I started in June '08, 3 weeks after finishing 4 rounds of Taxotere/Cytoxan. I don't know if I'll get to graduate after 5 years. My med onco says I'm in a "gray zone" between those for whom she recommends additional years on AI and those who get to stop after 5. There is no question on anyone's part that I'll complete 5 full years, though.
The SE's I've had on this drug have been typical - hot flashes, vaginal dryness, aches and pains, thinning hair - but for me they've been mild and manageable. I was already 5 years into natural menopause when dx'd with BC, and my Arimidex SE's aren't much different from what I'd be experiencing anyway at my age (60).
I'd had some osteoarthritis in my neck and hands for more than 10 years, so it's hard for me to distinguish the aches and pains I feel now from the ones I had pre-BC. The vaginal symptoms are annoying (just ask my dh), but, again, I'd already started down that path before my dx. Hubs and I use lots of Astroglide for that problem; I take an occasional ibuprofen and/or Aleve for the achiness, which can make it hard to fall asleep. I do think I have bouts of mild depression that I didn't have before - sort of "blah" feelings for no reason, that last half a day. The hair-thinning is something my hair stylist and I notice and talk about, but, hey - with Taxotere/Cytoxan, I was totally and completely bald. How does this hair thinning compare to my chemo experience? Not even remotely similar. That's about it for the annoying SE's.
The SE I was most worried about is bone thinning. That seems to be the most serious of the well-established SE's of Arimidex and Femara. For me, though, it has not happened: I have not lost bone after 4-1/2 years of Arimidex/anastrozole. My med onco ordered a baseline DEXA bone density scan back when I started on Arimidex. It showed mild osteopenia in my lumbar spine, but my hip/femur was fine. I had another DEXA 2 years later, and it showed the same thing in the same places. Just 3 days ago, I had yet another DEXA (they're done at 2-yr intervals at my center), and once again, there's been no change at all since my baseline scan.
That's very good news, of course. I'd been really stressed about the possibility of needing a bisphosphonate, something that my docs have been resisting as much as I have. Now it looks like I don't have to worry about it. My med onco said if I was going to lose significant bone from Arimidex, it would have happened already (not to mention the 5 years of menopause that preceded my BC dx). My osteo doc (an endocrinologist) said things are so stable that she doesn't even need to see me for my next bone recheck until 2014 (!).
Please understand that I don't mean to minimize the problems some women have on Arimidex/anastrozole. All I'm trying to do is point out that it isn't necessarily going to be a horrible experience, and everybody doesn't develop osteoporosis on these drugs. There is a lot of variability. My advice is to give it a try, and see how it goes.
otter
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Hi blessings, I'm doing pretty well adjusting to Aromasin, 2 weeks now. Tired, some reflux, not bad. I have developed some anxiety, am hoping that subsides, just as the fatigue and reflux have.
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I started Arimidex after 5 years of Tamoxifen. I have had osteoporosis for a while, starting after hysterectomy at age 41. Take calcium +D and I think that slows down the osteoporosis process. (I do a bone density scan once every 2 years). I didn't have any strong SE with the Arimidex. Some hot flashes but nothing really much or serious. My knees feel stiffer so maybe that's due to the drug???
I am at this point very busy with my right hand that totally stiffened during tendinitis of the wrist because of under-use of the fingers, and I doubt that the drug has anything to do with the issue. I am going to ask th MD about it. In any case, as I don't seem to have serious side effects, I will just continue taking it. After all, if it's a choice between CA and osteo, I go for the latter!
In the meantime, this thread is very interesting and indormative, because the only one that I have spoken to who took Arimidex, was also fine with it. Sharing with all you gals, definitely broadens my horizons.
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Ruthbru, I appreciate your common sense approach. This is not to diss any of the side effects that others are having. (I had taxotere side effects that others didn't, and my nails are still trashed 4 mos later...unusual)
but hopefull overall the SEs are minor or tolerated. But not 10 years, I hadn't heard that before! I am 3 mos down, 57 to go...
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Otter: Thank you for your post!
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junif... Be brave and hopeful. I agree with ruthbru that the ones with the most severe SE's are the ones who post most often, hoping for help/advice/comfort. I made the mistake of too much google/searching/web exploring for my own good. Had read horrific accounts of pain, weight gain, hair loss, etc. I will have been on anastrozole for 11 months, tomorrow... I have past-shoulder length hair, and have not had thinning. I had a few aches (and thought, here-it-comes), but am no longer having any at all. I teach full time, on my feet all day, walk-trot on my treadmill, and have not gained weight. I have had no hot flashes at all (but did have cold flashes--odd!--that have stopped.)I had some energy issues... tired, tired... but since adding magnesium supplements, am far better. (Along with the anastozole, I have been directed to take 1800 mg calcium citrate, 3000 IU D3, 500 mg magnesium, and a multivitamin. I follow it exactly, and have been told during appts that following directions is the path to feeling better, so I can't complain.) I do wish you the best, with long-distance hugs and prayers. So many ladies here can offer more wisdom than I, having been in the trenches longer... but it's truly doable. My students don't even know I have bc... Enjoy tonight's meteor showers. Always look up. :-)
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Skittle, Dassi and Otter--thanks for those posts--I'm sure a lot of us appreciate you guys telling us about your experience....it helps IMMENSELY!! Thanks again
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Otter- That's great news on your bone density tests. Its encouraging to know that Arimidex doesn't always mean you lose bone. My onc has really been pushing me to start a bisphosphonate for over a year now. What have you been doing to protect your bones? Sounds like it worked
Skittle, thanks for the info about magnesium. That's something I think I need to add to my daily vitamins. I do 2000 of D3 and so far that's kept my Vit D level up in the 60's.
It is always good to hear from those that SE's aren't as bad and get tips on how to make SE's better for us all.
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Wow, I'd be thrilled to have a 40 for my D! Sadly, when it's a mere one point above the bottom of "normal", many don't think there's a problem.
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Lee7...google "bone density and prunes"...interesting stuff!
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Galsal I was in the single digits and got mine up to 79 with supplimental D (and calcium). I would love to eat prunes instead but they upset my stomach. I read about prunes a year ago.
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Lago...not sure if they help, but they can't hurt and I love them! Must admit I am not diligent about taking them because I forget. Many can't take them because of the fiber element but for me they are OK.
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It's not the fiber… that's good for my IBS since I can get the big C with animal fats. It just upsets the stomach. I can't eat strawberries anymore either. But I can eat black raspberries and craisins. Go figure.
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Yeah foods are strange...just like the prunes...they are good but plums don't work. Wonder why drying them makes a diff...must just be the boron in them that perhaps plums don't have. Shame about strawberries!!
Actually I just read a study from the EU that says prunes are not a laxative. Seems to have that effect on many people. I have come to the conclusion there are too many differing opinions on just about everything. LOL
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Lee7, I'm embarrassed to admit this, but I'm not doing anything spectacular to keep my bones healthy. Yes, I've been taking Ca supplements (calcium citrate = Citracal) and Vitamin D3, but not in the megadoses others are taking. And... I've turned into a slug. I'm afraid I don't get the regular exercise we're all supposed to get.
I probably have been consuming 800 - 1,000 mg of calcium and 1,000 IU of Vitamin D3 in supplements, plus calcium here and there in my diet. (I like dairy products, so I do eat some cheese and/or yogurt most days.) The amount I take fluctuates from day to day because I have a fairly narrow window in which I can take my Ca supplements. We're not supposed to take more than 500 mg at a time, because any more than that will not get absorbed across the intestine. Besides that, I take some prescription meds first thing in the morning and right before bed that can't be taken within, oh, 4 hours of calcium and magnesium supplements. So, some days I have to skip some of the Citracal if I've waited too long past suppertime. <sigh>
There's one other medical factor in my case. For a very long time, I've been secreting too much calcium into my urine. It's called "idiopathic hypercalciuria," and it can cause kidney stones (which I've had). As we age, it can also contribute to bone loss - in fact, idiopathic hypercalciuria is considered an under-diagnosed "secondary" cause of osteoporosis in menopausal women.
My hypercalciuria was finally controlled when an osteoporosis doc (an endocrinologist) put me on a dirt-cheap diuretic that "conserves" calcium. I started taking that drug shortly after I began taking Arimidex. So, nobody knows exactly what has kept my bone density stable these past 4-1/2 years: is it the control of my hypercalciuria? Is it the supplements I've been taking? Is it the fact that my bones were really healthy (T-score was a nice, positive number) leading right up to the onset of menopause? Is it the fact that I was already 5 years into menopause before starting Arimidex, and had already lost most of the bone I was going to lose?
Based on zero data, I tend to favor the fact that my bones were really strong leading up to menopause. I know that because a previous endocrinologist insisted on doing DEXA scans (pre-menopausal) to see if the hypercalciuria had affected my bone density. (It hadn't.) I consumed a lot of dairy products when I was a youth - even in my college years; and I walked at least 4 miles a day throughout my late teens and 20's. (Don't you wish you could turn back the clock and do certain things differently?...)
Other than that, it's a mystery, and of course YMMV (your mileage may vary)!
otter
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Talking about vit D - besided the calcium with D that I take (I hate them because they are these big pills and I need 2 each day. I admit I sometimes skip), I also get vitamin D3 drops. My MD tells me how many depending on the results of the blood test. I used to forget, but shetold me I can take a weekly dose, drop them on a piece of bread and that way I am more likely to remember. It does do the trick of keeping my level OK. I don't know about you guys but I sometimes balk at taking all these pills. Yeh, it's what I need, so I do take the most important ones each day. I guess I should look into magnesium as well.
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Thank you for refreshing this topic!
When I read dngdonnelly's I thought "I could have written that." I've been on Anastrazole for one year, following a lumpectomy and radiation. My doctor just took me off of it for three weeks to see if my extremely sore ankles and feet and thumbs and lower back are SE from this drug. Honestly, just getting out of my desk chair at work is a struggle that others have noticed and that make me uncomfortable for them to see. My hair has also thinned, but not too noticably. On the bright side, I have not gained a pound!
But, in just five days of not taking it, I woke up this morning keenly aware that I wasn't limping to the bathroom or trying not to fall down the steps! I feel like myself again already. Thank goodness.
I find some comfort in knowing that others have had the exact same experience, because it's tough. I want to continue treatment, but man, this stuff threw me into "old age" way too soon! I'm hoping there is an alternative that I can take, but if not, I'll just hobble along. One down, four to go. We can do it, gals!
Again, thanks for sharing. I'll report back after I see the doctor again. In the mean time, I'm going to enjoy feeling like me for a while.
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Out of curiousity, did any one get a skin rash while on this? It doesn't itch or any thing, it's just there. Thankfully, not in a visible place.
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"I woke up this morning keenly aware that I wasn't limping to the bathroom or trying not to fall down the steps"
cb~ this is EXACTLY how I feel.., limping, struggling to walk down the stairs, getting up from a chair.., I've been on Arimidex (only) since August 1st. I don't know what to do! It doesn't sound like the other AI's are much better. I take 2000 IU Vit. D3, 1500 mg calcium, B complex w/ 500mg vit. C & other supplements (in that B complex).
Once again, I am coming out of my "state of denial" and beginning to face my new reality (life with what I call the 'tin-man syndrome'.) I find that one of the hardest things to face is the lack of understanding and therefore, lack of support because "you're done with treatment now, right?" And it's not their fault.., there's so much more education to be done. This is just one of those life situations that you can never really grasp until you've experienced it. Surely my supporters try, but they really have NO idea of the pain and discomfort associated with AI's.
I want my old life back. Before cancer. Although during treatment I was so comforted by all of those who supported me. They sent cards; they called & e-mailed; they came to visit; they asked how I was. And now it's back to reality..., my mailbox is full of bills; my answering machine is full of political calls; my e-mails are full of spam; and when they ask how I am, it's not the same anymore.
So thank you cb for pulling me out of my denial. I needed that. Now I'm back in the fight..., just don't know where to begin when it comes to the AI stage. I welcome any advice from all the brave ladies here on bc.org!!!
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I walk like a platypus to the bathroom every morning. Once I finish peeing I walk normal again. I know I'd be a lot worse if I didn't work out.
C-Squared I'm going to drag you the the Strides event next year. It was the first time for most of us and we all loved it. I think mostly because we (Illinois Ladies group form bc.org) were doing this together. WE GET IT. Invisible did it and she was 2 or 3 weeks out from last chemo. She was on AC and had a rough time too. Joan still recovering from back surgery. What is nice about this walk is its not competitive and along the lake.
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I have been on Arimidex (well, generic Anastrazole) for about a year now. I have done really well but do have joint pain. Especially in my knees. My hands bother me from time to time but so far all is manageable. The knees are more annoying as they can really get stiff. I try to keep moving as much as possible.
The hot flashes/night sweats are the worst. I sleep in a cotton t-shirt and cotton shorts. I just keep a clean dry t-shirt handy as well as a fresh pillow. I wake up soaking a lot. Sometimes I can't seem to regulate my temperature in the daytime. I go from freezing to sweating in a manner of seconds. Hard to know how to dress for this!
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I just love you ladies. Somehow the warmth in voices, the humor held at bay by aches and frustrations, the patience that comes with this mess... it all comes through. I feel so blessed to have found this discussion board. As for those who just don't get it, you might refer them to a youdon'tlooksicktome site, and read the story of spoon theory. It's an extended metaphor of what we each encounter on a daily basis, and is reachable for anyone with the willingness to read (co-workers, friends, those whose concern stopped when you became more "normal.") C-squared--I understand the bills/spam/political calls let-down. And I fully, completely, like you, want my old life back... But, we all muddle forward together. lago... platypus! Can't help but admire your spirit! And dassi52--only this week did I hit the wall with the gigantic pill can't-take-one-more you are feeling. I skipped several calcium elephantine pills and couldn't force myself to take one more... But guilt and worry of what-ifs crept in, so now I'm being good again, and forcing them down.
Does anyone know of a small yet high-content/mg calcium carbonate? I bought an enormous bottle advertised as petite, but they, too, are bigger than prenatal vitamins, and I have to take so many! sorry to complain... I think I resent them since they are much of what makes this bc so real on a daily basis, so I can't pretend all's well. Silly, I know. But I wish each of you a strong day with lessened pain and increased joy.
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I just found this post and was surprised to see how many of us have developed trigger thumb, sore fingers/thumbs since taking arimidex. I am seeing my oncologist again tomorrow, and that means I have been suffering with these painful thumbs for the 3 months since I had seen her, plus about a month before that when it first started. I knew to expect joint pain, but since my legs, neck, back had hurt during chemo and the neulasta shots, I just figured those would be the joints to hurt now. I didn't even attribute my thumbs to the arimidex until I saw the onc, who wanted me to take ibuprophen and try to live with it since the drug is supposed to be so good for us. Anyway, several of you mentioned having this problem, and many said that eventually it got better or just stopped hurting, etc. Did anything help? Did anyone consider seeing a bone doctor for a shot or surgery or anything? I would love to think that I would just wake up one day and realize that it was better.
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skittles
..I agree, this thread is special. It has helped me a lot.thanks otter for all your information!!! You brought up some good questions that I want to ask my onc about. I was 3 years into menopause, and 3 months on Arimidex before I had my first DEXA scan. I'm now thinking/hoping my osteopenic scores might stay stable instead of getting worse since I started eating a lot more calcium right after that scan.
galsal, I don't know if a skin rash is a common SE of Arimidex, but you might want to ask your onc about it. I get nervous about rashes because that makes me think it could be an allergic reaction to something. Of course, we're in FL and it could be the heat!
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hello ! i have read page one and 25-sorry! i promise to go back through someday!
yesterday, i started arimidex...i THOUGHT i was going on femara but doc decided differently=he gave me samples and said try it for two weeks- if no major bone pain then fill the scrip he gave me....
i had hysterectomy and oophrectomy in '99 and not a flash at the time so i am curious about this!
right now i am taking mine in the a.m. when i take the other necessaries so i won't forget- i'll be curious to read about those of you who have tried other times....
well- off to read more!
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Thanks Lee. RN at work seemed to think it wasn't fitting most things. Yep, seeing the Onc's NP on Thursday so definitely will speak up about that and the headaches have had almost daily since the Lupron and Arimidex.
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lumpynme--With reading endlessly about experiences across the planet (before I took my first pill, being truly afraid of it), it seemed to make sense to me when frequent concensus suggested taking it in the evening. Opinions I read seemed to suggest SE's are stronger sooner after swallowing than later, so suggestions led to taking it later--to hopefully sleep through the "yucky" part. I began taking mine about 6pm and continued to... Can't say whether it works or not, since I've never switched to mornings to test the theory. I take a couple of calcium and one magnesium in the morning... calcium and D3 mid-day... calcium, magnesium, multivitamin, and anastrozole sixish... and calcium before bed. My onc seems pleased so far, so I stick with it. Good luck to you. Feel well.
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Hi Ladies: I appreciate all your posts. My lower back has been bothering me a lot the past few days and off and on over the past month. Never thought it could be a S/E of arimidex (been on since 7/25). Just kept thinking it's my achy back. I go to the MO in about 2 weeks. Will ask her about that. Am taking calcium, multivits, as well as extra D3. I am tired too! I agree with the other gals: Just want my old life back, but am just happy to have what I have. Truthfully...I consider myself lucky to be alive and there's not a day that goes by that I am not thankful (hurting, but thankful!).
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I took Tamoxifen for my first two years and about 6 months into it, I started having headaches that would sometimes last for several days at a time. My onc didn't want to give me anything and referred me back to my regular doctor. Luckily all I did was email him and ask for help and he called in a prescription for Propranolol. When I picked up the prescription, the staff at the pharmacy went on and on about what great luck they have had using this drug to relieve headaches. I sure didn't want to take more pills but when you can barely function because of ongoing, slamming headaches, you'll try just about anything. Still have a few headaches, but it is nothing like before. Whew!
My painful, stiff knees were much worst on Tamoxifen, but the Anastrozole probably hasn't fully sunk it's teeth in. This is only my second month on Anastrozole. What was really wonderful was that first week off the Tamoxifen. I felt more and more normal each day.
I have a weird patch of skin too, but mine does itch. Sleeping on my back is pretty much out of the question because that really ramps up the itching. In the evening, my back tingles and has the weirdest sensation. I don't know what to make of this and I really don't have anything to show a doctor so I just keep hoping it's a SE.
Recently started taking my Anastrozole in the morning and I think I like that best. I have a difficult time getting to sleep and I think the Anastrozole may have made matters worse.
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lindy my NP told me to take the Anastrozole in the morning for that very same reason.
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saw the Onc's PA today. will still continue with the Anastrozole and take Aspirin or Tylenol as needed for headaches. we're hoping the earache is really coming from the dental work that has been happening since mere days before began this med along with the Lupron.
for any future surgeries that aren't emergencies, I'll take some kind of med to avoid the hypercoagulation that happened with the last surgery. for right now, we're working on the assumption that mine occurs due to provocation. if it occurs spontaneously, then things will have to change about treating that problem.
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Oh, gals,
I read the most recent posts and my heart went out to all of you. I did 2.5 years of tamoxifen, followed by 2.5 years of Arimidex. While I was on the AI, I remember getting out of bed to walk to the bathroom in the morning, was, "Ow. Ow. Ow. Ow. Ow" with each step. When I came from the bedroom to get my coffee, my husband told me he had just watched be go through ALL the phases of Darwin's evolution of man... From knuckle dragging on into upright walking. LOL, really! It was SO true!
I remember sitting in business meetings in air-conditioned rooms, while the sweat rolled down my arm and dripped off my elbow... and me, trying to act nonchalant!
Well, I got through it. I have to admit, though, that when they offered me a clinical trial, free meds for ANOTHER 5 years of AI... I had to say, "Thanks, but no thanks." I wanted to build some memories with my family that didn't involve me chugging pints of cold water! DH was willing to put a tiny refrigerator next to the bed so I'd have cold water all night!
Hang in there! (((hugs)))
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Thank you SillyMama for your validation! Like all of us, I dealt with the diagnosis, I survived the surgeries and I stormed the weather of the chemotherapy! BUT I had NO IDEA that this would be the worst part of my treatment..., the AI,(Arimidex)..., I want to cry everyday.., but I stay strong because those I love.., my supporters.., have no idea that this is the absolute WORST part of my journey thus far. The SE of chemo subside. The scars from surgery heal. But the PAIN from Anastrozole lives on in my joints EVERYday! I try to remain active. I power walk and it HURTS! Then I get an endorphin surge but the next day I feel worse! I just don't know what to do! I am so sad that I have to live this way. I want to remain positive because that's what my family, friends and colleagues have come to expect of me, but I'm on a downward spiral..., I want everyone to understand that just because treatment is "done" does not mean that I am not suffering! I just don't know what to do..where to go.. or how to feel better. I am so uncomfortable, all the time......... Aaaagggggghhhhhh!!!
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C-squared--Good for you for such a great attitude. Not curling up in a ball and crying, "I give up!" Wish I could bottle up some good feeling days and send them your way. Love and hope are sent your way. Anastrozole has been kinder to me. (But I have a brand new, sudden ouch/bump that I'll be asking about next appt. Hmm.)
SillyMama--Love the Darwin analogy! (Been there briefly, but never had presence of mind to label it cleverly.) Wishing you well, too.
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Skittle~ Thank you so much for your kind words but I can't seem to find the "great attitiude" that you refer to..., I am so on the verge of "I give up" and in some ways WISH I am not a survivor. Anastrozole has not been kind to me and cancer sucks! I never felt this way until now. I could deal with the surgeries, and the chemo..., and I am having SUCH a hard time dealing with the permanent pain!!!
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C-squared - Poor you. It must be miserable. Has your doctor been of any help? Does he or she understand what you are experiencing? Can you switch to something else?
It's funny how once we are past radiation people all assume we are fine. From posts here, it's apparent that not everyone is "fine".
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I am truly grateful I don't have those horrible SE many of you have. But I figured that my stiff knees are probably a result of the Arimidex. And I had thought it was just old age creeping up on me. When I see my onc in about 8 weeks I am going to ask her about it. Other than the chemo I had been weathering the drug regimen ok - just some hot flashes etc, so I never really looked through the paper with the warnings that comes with each package. This forum really gave me food for thought. Could this drug also cause tendinitis(or aggravate it) of the wrist? You mentioned trigger fingers, and tendinitis is not that different.
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Newflash, I am back. Sorry, it took me some time to wakeup. I wanted to tell you all that I am happy in my decision, not to take Arimedex again (for myself). Just this last week, I have felt like I use to, before Chemo. I am cleaning out everything at work, my work load has doubled at work. I cleaned out the refrigerator, all the drawers and closets within two days, plus vaccumed the house and did my laundry. I told my co-worker....
I'm back). As far as the nails. My nails would detach, if I cleaned under them and it has been two and a half years since Chemo. So I stopped cleaning under the nails with tools, only brush them, purchased "Silica" from the health food department and you ought to see my nails. It has took about nine months, but my nails look healthy and beautiful again. I find not to push the cuticles back around the frontage of the nails, only push the back of the nails, with your own nails or with a ink pen cover (sterilized)...use something soft and gentle. Don't use anymore of those boarded emory boards (sandy things) or the wooden cuticle sticks...they tear up the nail bed and I think gather germs in them. Only use the metal file's and sterilize them. Again, push back only with your own nails or something soft and firm.PS: I don't know why I am not getting emails notices from the Breastcancer.org when people reply on our posts. It makes me miss out a lot.
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c-squared...my heart goes out to you...have you tried generics?..They say that it is the same med-wise but that the fillers are different and to many, it made a huge difference. Just a suggestion. ie: aromasin?
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C-squared I know last month when I told my NP about my SE on anastrozole (not too terrible but I hate the stiffness and I do keep moving). She said to me "doesn't sound like your ready to switch to another drug yet." You may find that some of the other AIs are not as bad. Joan on IL Ladies thread switched a few times. I believe she is much better. If your onc hasn't discussed the possibility of switching I think it's time for a 2nd opinion. BTW I was more scared of taking this drug than chemo… and I told my onc that. Few months of chemo, yes I can do that. 5 years of anything! Besides being married for 18 and living in my current home for 10 I haven't done anything for 5 or more years.
HopeFloats my nails are still some what lifted, very brittle. The dermatologist gave me some med (Urea) that has flattened them a little but still lifted and brittle. Is that what the Silica improved? Also I use a glass file. Also much finer and can be washed.
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Saw my BS yesterday; I love her. More helpful than my MO, also a woman...who is very rushed and I get the feeling that since I declined chemo (oncotypes 6, 15) and had a mast, she isn't too interested in me.
BS asked about my AI, which I am finishing the 3rd month on, and I mentioned the stiffness/aches and she mentioned switching to another brand. I'm not ready to do that yet, and am upping my OTC main meds (only taking 200 mg ibuprofen and a baby aspirin..now adding a tylenol before bed when I take my Arimidex).
My point is, a BS readily suggested changing after only 3 months. Your MO should be on top of your pain issues....but I guess we all have to push them.
If you haven't already, check these theads for the other things to do, ie taking extra D, tumeric, raisins soaked in gin, etc. Don't skimp the pain meds, either. You will get through this, one way or another!
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Actually I would be careful of the pain meds. They can cause other issues like ulcers in stomach etc. You need to discuss with your doctor how safe these are for you as an individual to take on a long term basis.
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Wow. I'm glad I stumbled back onto my breastcancer.org site. I haven't been here for so long... you know, pretending "it" never happened... I've been on Arimidex since Friday, April 24, 2009. I'm sure they switched me to Anastrozole since 2011 or thereabouts. I don't remember that part. You know, in Jan 2010 I was a real slug, and my sister coaxed me to climb these long stairs to the top of this cliff in Waikiki ~ anybody know it? I didn't think I could walk to the place from the hotel, much less climb all that way. But I did it. About three weeks after my trip to Hawaii I was in the shower and noticed I had no feeling in my lower left leg. Still to this day there is tingling and now my left knee is swollen and painful. I never even thought to connect it to the meds. I wonder. As for exercise, there is only one copyrighted exercise that was designed for the feminine body - called S Factor. Most women know it as pole dancing, but it is also just a mild form of feminine circular yoga/pilates movements. In honor of breast cancer awareness month ~ Sheila kelley chose to launch a video of breast cancer warrior Diana Schlobohm, a NY S Factor student who was Dx'ed Nov. 2011. This vid was taken 6 days post surgery. And I cry every time I watch her beauty. Because we know the pain.
http://youtu.be/Qz3V9M9gquo. You are welcome to share it from sheilakelley.com -
I should have made it known that I have not (yet) had a discussion with my onc about the discomfort I'm haing associated with the Anastrozole. I'm confident that he would be responsive, if I had. I'm just trying to give my body time to adjust..., get more active (back in shape).., and up the calcium, Vit. D, etc. I'm not one for the pain med route as this will be a 5 year venture.
Thanks all!
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C-squared - the manufacturer of my Anastrozole is Sun Pharma. I got it at Costco because I have to pay my own meds - $50.00 for 3 months vs. $300.00 at Walmart. Anyway, I have a little bit of discomfort but nothing like you describe. I know many people who have changed manufacturers and it helped them.
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C-squared, I found my body kept having to adjust and it seemed to go in cycles. I'd feel ok on the arimidex and then I'd have a couple bad weeks and want to change or quit altogether. But then by the time I was back for another appt, I'd be feeling a little better again so I decided to stay with this one drug and so forth. So maybe give this one a little more time, but if things don't feel better then ask to try another AI.
I'm a little hesitant to ask to switch now because at my last appt my MO suggested I switch to Tamoxifen. I was surprised at that. I thought the AI was the preferred choice for post menopause women but apparently they put some on it to help with bone loss. Anyone else have their onc mention Tamoxifen as an option?
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Costco also sells Teva brand but it must be ordered. I prefer Teva because it comes frome Israel. Sun Pharma is India. I try to avoid meds from Asia.
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throwing it out here although have no doubt it's already some where on a thread. what to do about constipation from Arimidex? that's what I believe it's from. doubt it's from the Lupron.
already have been taking fiber on purpose.
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C-squared... When you see your dr, you might ask about the value of glutamine. My daughter worked in cancer research as an undergrad (about 7 years before my diagnosis) and the research was truly promising. It has no taste, can be mixed with anything --powder, not pill-- and may offer you an avenue of healing. When I said great attitude, I guess I did not express myself well... I could read your pain and frustration and fatigue from fighting. And I think anyone with the persistence of spirit to power through all that to sit down at a keyboard to reach out to others to share stories, bring comfort, ask for help... that takes (to me) a great attitude. You stay strong for those you love. Let them be strong for you, if need be, ask them to be strong for you. It's your turn to rest in someone else's care and concern. It's your turn to let colleagues pick up the slack. It's your turn to be able to say you're tired. You have earned, more than earned, the respect and support of those around you. We have been conditioned not to ask for help. Women are the wonder-creatures of the universe somehow. Supermoms, supercareers, supersupporters. Well... humbug! Let someone who loves you know how you feel, so you know you can survive the pain with that safety net/safe zone. There's no shame in falling on others when you've been through so much. (Makes me think of a country song--If you're going through hell, Keep on going, don't slow down, If you're scared, don't show it
You might get out Before the devil even knows you're there... ) Pain is a relentless burden that changes the way we think. I hope your dr will suggest a quick and successful solution for you. Phone Monday if you find your struggle beyond your coping. The health professionals don't expect you to suffer in silence.Love to you and prayers for lessened pain.
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Galsal I have IBS so constipation was always something I needed to deal with. I take Nutra Flora daily. I find the days I eat a yogurt too its even better. The Nutra Flora is like a stool softener.
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Galsal - my MO told me to take Calcium with my Anastrozole. She forgot to mention that calcium can cause constipation. That's why I always take it with a magnesium supplement.
Sometimes you have to experiment with amounts....if you get the opposite problem, you know you've taken too much!
I also take a probiotic every morning.
ETA: AND - stay well-hydrated!!!!!
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Prunes!!! Great for the bones, great to prevent constipation too!
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harvest, try fish oil. make sure it's mercury free. it's helped me tremendously when there were days that I could hardly get out of bed
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This is my first post on this thread and I am happy to have found it. Sorry, but I haven't read all the way through the posts so if my question has been asked already, I apologize. I started taking anastrozole in June and had no noticeable side effects for the first few months except for a few hot flashes. Well, as of the past month I am having hot flashes more often, am gaining lots of weight (ugh!) and I have developed pain in my joints, particularly in my knees. I don't have an appointment with my MO until the end of November so decided to e-mail him regarding my painful knees. He promptly replied that the joint pain is probably from the anastrozole and added that the pain should get better in time. So my question is this...did anyone experience the joint pain getting better the longer they took the anastrozole? I would really appreciate your input. Thanks...Linda
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Thanks for the suggestions. Prunes are out, can't stand them. Love plums though so go figure. Interesting about the Magnesium. No doubt a probiotic certainly can't hurt. Seems like I take meds left and right these days - borderline hypothyroid, borderline diabetic, borderline low vit d, antidepressant, sleep help at times, etc. I too have IBS although almost never on the constipation side of the spectrum. Ironically, when I was some what recently taking Calcium it didn't cause any constipation.
Good grief, all this talk about things we never thought we'd have to bring up.
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linnyhopp...welcome!
As you read through the replies, you will see many of us taking Arimidex also take a daily Claritin for the joint pain. Most of us started taking it because of the pain associated with Neulasta and found, because it eased the pain, tried it with Arimidex as well. It seems to work. It is the 24hr med with just the antihistamine and NOT the one with the decongestant. It seems to work wonders for many of us. I quit taking it a few months ago because the pain stopped but would take it again if it comes back. Please check with your MO first though.
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linnyhopp My 1st 3 months of Anastrozole I had no SE and a matter a fact my minor hot flashes from chemo seemed to go away. I had stiffness during chemo so for me I had an improvement and even more improvement once I stopped Herceptin. I'm about 20 months on Anastrozole and I do have some stiffness but I exercise every day. I find the days I'm inactive much worse.
I am about 4-6 lbs heavier than I was a year ago but I'm not so sure this is from Anastrozole. I think this might be normal, you are now in chemo/menopause stuff. Also now that I have larger silicon boobies I attribute a 2lbs increase to them
Granted some women do put on weight with it.I know my onc made sure my vitamin D levels were in the right place before I started. She told me women that have low D seem to get more joint pain… so be sure to have that checked if it hasn't been checked already.
My hot flashes are minor but when I do get them it's because I've eaten spicy food. I find certain pepper is worse than others. Kim Chee is a killer but I love it so I deal with the flashes at 4am. Still not as bad as chemo but just enough to wake me up.
If the stiffness is bad enough that it is impacting your life you need to discuss this with your onc. Many times they will switch you to a different AI and it will get better. That said your body might just have to get used to it as your onc indicated. Everyone seems to have a slightly different experience on these meds.
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ruthbru.... you do swear by PRUNES!!! LOL.
I was never a big fan of them because they get stuck in my sensitive teeth, but I am starting to like them. I bought the individually wrapped ones by Sunsweet and I toss a few in my lunch bag everyday.
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Schatz & Lago ~ Thanks for your insights and suggestions. I am definitely going to ask my onc if it's OK to take the Claritin. I am assuming generic is OK? I did not get the Neulasta shots but read about so many who had bone pain from it and took Claritin. It certainly makes sense. My PC is checking my Vitamin D level. It was quite low and I took 6 weeks of the prescription "mega" dose. I just had my level checked again last week but haven't gotten the results back. I will make sure I continue to take D daily. My knee joints seem to hurt the most which makes exercising pretty dificult and I am sure that doesn't help with the weight situation. Oh and Lago I am just as sure as you are that the bigger boobies definitely weigh in at AT LEAST 2 pounds...maybe 2 pounds each! I am going to follow this thread so I get even more great ideas from all of the posters here. Thanks again...Linda
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C-Squared: I am so sorry you are in such pain. I have stiffness and soreness as well, but just keep trying to plug along. I don't this my symptons are as severe as yours, though. I have numbness in my fingers in the middle of the night, and sometimes I can barely moved due to stiffness in my lower back. It's weird, because the next day, my back can be fine again.
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Lago, yes the Silica took care of the detachment of the nail, though I did also buy a liquid from Sally's Beauty Supply that is used for fungus....it stinks." I didn't use it that much for the liquid's solution would thin the entire nail down to nothing, like it did my toenail. I don't like using it and seems like the grooming (filing) of the nail is crucial. I bought one of those crystal nail files and didn't like it at all, it left debris behind and I didn't want that behind to nail either.
Sickness with chemo? Ask your insurance company what kind of immune shots that they may cover for you, then have your doctor prescribed them to you. Or ask him/her first, get a list and then call your insurance provider and ask. They are worth $1200 per shot and I had two a month. It was like taking happy gas, your energy level was over the top and no sickness. Bless you all.
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I have decided to try Arimidex starting Nov 1, 2012 after a failed trial of Tamoxifen... I am hoping the Arimidex does not make me as foul as the Tamoxifen did. The doctors won't give me anything for the depression I've had so I doctor myself. I am taking 1/2 a tramadol twice a day. It's side effect has taken my depression away and helps me cope with teaching all day and my other tasks. I completed my radiation the seventh of September, 2012. I can only pray that the side effects don't make me stop taking it too.
Thank you everyone for posting the good and bad. It helps to know it's not always bad for some, and there is hope that it may not be real bad for me either. Hope.
NRP
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I don't know what others might say to this, but I have had terrible constipation for a while now (and I'm not on any meds). Will start Arimidex on Nov 1, 2012. But what I do take is Tramadol for depression (Docs won't give it to me, would rather prescribe lexapro or other anti-depressents...I get mine from Tramadol from a relative for now, but it really pi**es me off to have to do that). Anyway. I take a teaspoon of light virgin olive oil every night, and my constipation completely disappeared. It's natural, it works for me.
Hope it helps.
NRP
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One teaspoon of extra virgin olive oil works for me (take it once every evening).
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nrp a friend of mine (actually met on bc.org) just switched from 2 years on tamoxifen to anastrozole several months ago now that she is in permanent chemopause. She said the SE are nothing compared to tamoxifen. So much easier now. Hope it's the same for you.
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Nrp, I take Tramodol tor pain. I had never heard of SEs with it, or that it helps with depression. What info do you have on that? Curious to find out now
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Hi. I took Arimidex for 9years. I didn't have a lot of problems. Tired and couldn't sleep a lot but that could just be anxiety. Stopped Arimidex this year 2012 because of small reoccurance. Now I am getting Faslodex injections once a month. Seem to be ok so far but harder on bones even. Don't want Prolia or any bone meds because of side effects. Hope all of you just starting Arimidex will find it as easy as I did. Took it in morning. Jannis
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I cannot believe I just lost my post but it happens, right? So to make a long story short.., thank you for all the great insight and ideas you have shared with me about my aches and pains. Turns out my AI is manu by TEVA also (mail order pharmacy). I've got my thumb in a brace due to pain. I'm confident I'm losing grip and pinch strenghth daily. I have a f/u appt with onc on Nov 19th. First after 3 months and I don't know what to ask for (i.e., will blood test measure Calcium and Vit D?, do I care?). I felt much better prepared for chemo and BMX so I look forward to being further educated in this matter. What do you ladies suggest I do at this point? What should I expect at the first 3 month follow up with onc? and after? Thanks again for sharing your knowledge and experience! I truly appreciate it!!!
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C-squared, I truly believe Vit D level matters so do ask what your number is. I was able to raise mine into the 60's and I really think that has helped with my SE's. That said...my Armidex is made by TEVA. You have me wondering if maybe I should try another manfacturer.
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WebMD mentions it as a se. http://www.webmd.com/drugs/mono-5239-TRAMADOL+-+ORAL.aspx?drugid=4398&drugname=tramadol+oral&pagenumber=6
Mayo Clinic also mentions it: http://www.mayoclinic.com/health/drug-information/DR601787/DSECTION=side-effects
They state it's a false sense of well being, but isn't that what all anti-depressants do? Affects the serotonin levels. Tramadol just does so in the lowest manner...Did not want to take the others if I did not have to.
I just noticed when I took it for pain after surgery that I had a sense of well being. It doesn't affect everyone that way, but it does me.
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Lago,
Thank you. I hope so too.
nrp
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c-squared I know my onc mentioned to me that having low D could cause more pain from the AI. When I told her I had low D but it did come up some she tested me again to be sure. DEFINITELY GET YOUR D TESTED.
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Lee7~ If you're not having issues with the TEVA then no need to switch. I will ask about my Vit D level.. thanks for the tip!
Denise-G~do you know what manu the women who switched to/from??? I'm wondering if I should try the Sun Pharma???
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C-squared - sorry I don't know the name of the manufacturer she switched from - so sorry. I've not had any problems with Sun Pharma so far!
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My mystery continues. Ono took me off of Anastrozole on 10/17. Have taken every kind of anti-histamine known to man. My local Dr put me on Prednisone 10/26. And yet my itching and headaches continue. Has anyone heard of anemia causing these issues? Itching causing anxiety to go though the roof. I am not fun to live with
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It sounds like when I got hives. I was put on prednisone and it didn't do a thing. Went on claritin and it cleared up. I know the feeling. When you itch that much you can't sleep. Lack of sleep makes any one bitchy. Hope they can find the root of it. I got hives 2 times in my life and never knew what caused it. I also had heartburn with it and both times I had a yeast infection right before.
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mommacain - It can take a long time to recover from an allergic reaction. For me it was 3 months to get over a serious reaction to Neulasta. Another woman on the boards was struggling into 5 months with either Taxotere or Herceptin. Couldn't figure out which. Her chemo was being delayed because of this.
Your anemia may be making it more difficult to fight the allergic reaction or it may have nothing to do with it. Patience is too much to ask, but you may have no choice. Hang in there.
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I have been on anastrozole for 8 months now. I've had fibromyalgia for four years and the arimidex made me hurt more. Also, my knees and elbows hurt a lot and they didn't with the fibro. I did great with the chemo and rads, even though they were tough, but I also get very down because of the SE of this drug. I'm scared not to take it. I've been walking and recently started tai chi. Everything hurts but I keep going. I also am afraid to switch to another AI because it seems like all the side effects are the same. Now my jaw and teeth are hurting. Does anyone have any thoughts on switching to Tamoxifen for a couple of years, then back to arimidex? You are right that everyone expects us to be happy and act like everything is over with. This has been the worst part for me too.
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MaryTex - what part of your jaw aches? Curious I am.
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My MO told me jaw pain is one of the SEs of Arimidex. Perhaps a generic brand of Arimidex would help? Many have said they switched the manufacturer and the fillers are different and some have different SEs than others. Might be worth a try!
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so far i am feeling well-no problems sleeping etc-but the bitchiness surfarces at the oddest times!
we just made a 12 hour drive each way to bury my brother in law and came home to no electricity so i am thankful not having SE's!
Csquared-when skittle wrote about your attitude-she summed it beautifully! keep reaching out and WE will get thru it together!!!!
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mommacain - have you had your liver enzymes tested? Elevated liver enzymes and bilirubin can cause itching. I remember when I had HepB, the itching was awful. I took Questran powder to eliminate it. Just a thought....
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I was on Arimidex from February through August and just could not get past the muscle/bone pain. I could not walk more than 10 minutes or so and my leg muscles would just stiffen up and i felt like I was dragging my right foot the last part of the way. My Oncologist changed me to Tamoxifin, said it would help and that the exercise was more important than anything. I was also going stupid, could not remember lots of things...that is because the Arimidex was blocking all hormones to the receptors in my brain. Things have been much better for me on the Tamoxifin...the hot flashes and night sweats are still the same.
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Just below the ear - like TMJ. My right ear hurts off and on too.
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Thanks HWHranch. I think my onc would try switching me to Tamoxifen. Did yours say you would have to go back on arimidex after being on tamoxifen?
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thanks Mary, Schatzi. i'm on generic already.
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Thanks for all of the ideas. I really need help for my patience (it is almost non existent). Today email of onoc office took me off all of my new meds, vitamins included. Assuming my itch goes away, I will be adding them back one every two weeks.Hopefully, it will also stop the wieght loss and the headaches. Also going back up to the hospital for labs to check my anemia, vitamin D and liver function. It is my hope that one of these things are out of whack - so it could be a quicker cure.
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mommacain - Glad your MO office is stepping up. Stopping all drugs and adding them back one at a time is the classic way of trying to figure out what is causing the reaction. If you still have problems with the itching after stopping all meds, then examine what food dyes and food additives you eat. These can also cause hives, itching, and other skin issues. I've had problems with meds that have food dye in them. I think my latest bout with hives, right now, is caused by chocolate
, if not I'll have to do what you're doing to find the problem. Sorry your patience is escaping you. Hopefully you'll find the culprit soon and won't need so much.
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I have been taking Arimedex for almost 4 months. First 2 months, no problem at all. Last month, so achey and stiff all night, poor sleep, stiff when I wake up as if I were 109 years o,d. My onc wants me to not take it for 1-2 weeks and see if I feel better. Could be my old bed? Not stretching enough? My mutiple vitamin not enough? Or Arimedex ....kind of scared to not take it, but doc says there are others if this one is funky for me. Anyone else go through this?
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lisa I am very stiff in the morning. I'm still a bit stiff during the day but not like the morning. The trick it to keep moving though out the day. Try to get up every so often to stretch things out for a few minutes. I also exercise every day which really helps. It is not uncommon to switch to another AI. Some women do better on different AI. What you are going through is not uncommon at all but some of us don't have it as bad as others.
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I was so stiff I had to get off the Arimidex, stiff during the day after setting at my desk, stiff getting out of the car and really stiff after walking for more than 10 minutes.
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Hwranch, what did you switch to? And does anyone find mood issues?
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Lisa2012 - I've had mood issues since starting the anastrozole in August. Have also started with a right hip ache, and the arthirits at the base of my right thumb. Onc gave me a prescription for a drug to help with the moods, but when I got it and saw the nasty side effects, I just put it away and will not take it.
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What did he give you for moods? And what about hip soreness etc? I see my onc in two weeks.
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He gave me venlafaxine er. Like I said, se's were scarry!! The hip soreness just recently started, so will just keep track of it for now. Don't see onc until January, but if things get worse I will call and see what he says. I'm hoping that the se's will just get better. Keep me posted on your onc visit. Blessings
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My oncologist changed me to tamoxifin.
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hmm, I am post-menopausal and oopharectomy. Think I cannot take tamoxifen. I am now off arimedex for a week to see if I feel better. Not sure WHAT i should do. Feeling like I am not in my body and I don't actually care what happens.
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lisa you can take Tamoxifen if you are post menopausal/ooph unless you have a medical condition that prevents you (like blood clot issues). Before the AIs everyone got Tamoxifen. Its just premenos that can't take the AIs
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Ah good to know. Day 3 without Arimedex. So far no change but pretty short time. I see onc in 2 weeks.
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I have been on Arimidex for one year now. I have terrible joint pain. When I get up in the morning I am so sore and stiff I can barely walk. It gets somewhat easier during the day, but it is never good. I am going to PT now for my neck. My doctor thought my neck pain was a result of being in the collar so long. This was my third week of PT and this week was miserable. My neck pain was so bad it hurt to have massage so they changed that. They also took me off the weight training and now I just do resistance exercises. The last time I saw my MO was August. He asked about joint pain and then just blew off my concerns by telling me that joint pain is a common SE of Arimidex and there is nothing they can do. Really? I go again on the 15th and I want him to HEAR me. This is crazy to be in this level of pain. My right hip and lower back hurt and well as both knees, my neck and shoulder, and often my hands. I walk my dogs and try to stay busy....but it is a challenge.
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justmeganis ask if you can try a different AI. Some women find others are not as bad
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Just finished my five years on Arimidex. It makes me very scared.
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GracieM some of us are very jealous.
Seriously go live your life. You did your time and some super strong chemo on top of the Arimidex.Just be sure to continue to see your onc. I do believe there is a study that will be presented at the San Antonio conference this year that discusses 5 VS 10 years on hormone therapy. That's next month I believe.
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Justmejanis that is just crazy. I was only on it for 7 months and my oncologist changed me. I wasn't near as bad as you are but again my oncologist believes that being able to exercise and stay fit and healthy is a very important part of treatment. I am way better already on Tamoxifin and it's only been about 45 days.
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justmejanis...hate to sound like a broken record but have you been taking Claritin?
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Would some one share what the Claritin is about?
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Claritin supposedly reduces the SE (bone pain) you get with Nuelasta. I was already on Zyrtec so I stuck with that. The first shot I had terrible bone pain in my back, to the point I couldn't stand up straight. After that not as bad (took Aleve with my oncs blessing). The first shot is always the worst. For some reason subsequent shots not as bad.
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thanks for the insight!
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Galsal...many of us that were taking Neulasta during chemo, found that taking a daily Claritin (the 24 hour one with ONLY an antihistamine and NOT the one with the decongestant) really helped keeping any joint and bone pain from happening.
Figuring perhaps the same thing with Arimidex, we tried it again and most of us found the same thing. I took a daily pill for the first 3 months and then I had no pain so quit taking it.
My MO didn't advise it but he actually decided to suggest it for Neulasta patients now. Bout time!! He didn't think it would work for Arimidex but many of us found it does.
In any case, please check with your MO before taking it!!
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Ok, been on A three months now. Joint pain is a big thing for me,.but I have arthritis pretty bad to begin with. I need knee replacements before all of the bc stuff, so I am used to living with pain. Most days I hurt a lot when I get up and it is better during the day, although I can't stand, sit or walk for long. I am doing what I can and I am in chemo rehab, otherwise known as physical therapy, lite! LOL but here is my question. Last week,.I had pain in all joints so bad, it was on a scale.of a 10. I live with a 3 on a daily basis. It was horrible. I almost took my leftover Oxy pills. haven't had it as bad since. So, was it the weather? Yes it coincided with Sandy. And no, its been a pretty normal pain pattern since then. Opinions?
Ps, it was comparable to the first Nuelasta shot pain! -
Thanks, Schatzi. My oncotype was definitively in the low zone (a 12) so no chemo needed for me. No wonder I'd not heard about this, no need to have paid attention. I'm glad though it's an option for those who need it!
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Ok question - I have been on Anastrozole for 1 month. The first month I could hardly get out of a chair. It was horrible and pain was severe. It would lessen as I walked it out, but was still there. Plus, I was still having residual chemo pain, so it was like double.
For 4 days it has gotten 60% better. I've not done anything differently nor have I taken any other pills. I am kind of in shock it has improved so much. Does this happen as your body gets used to it? Here's hoping!!!
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Just wondering, on an average when do the S/E really manifest themselves? At the beginning, in the middle or anytime during the 5 yrs?
Mena
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Denise I bet it's your chemo SE going away. For me my chemo SE stiffness started to get better 5 weeks PFC.
I had no SE on Anastrozole till 3 months. My NP said that they won't get any worse. I'm not convinced of that but so far I'm only a little stiffer. been on for 20 months
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I had no side effects until 2 months. Then I was stiff and sore. My onc took me off for 2 weeks. It's been 9 days and I am definitely less sore and achey. I don't know if he'll put be back on Arimedex or switch me to Femara. Anyone done that?
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Mena... I'm a year into taking it and have not had the horrific se's that many seem to experience. No hair thinning, no severe pain. I have had a couple of achey weeks--mostly a left ankle issue, then knees, then right hand--but none were so severe that I considered quitting taking it. Usually a hot bath and curling up for a while helped. But now, I'm pretty much myself on a day to day basis. I do watch my weight more vigorously. Reading about the 30 lb possible gain scared me, and then all the media coverage of keeping weight down after bc diagnosis helped lessen rerun potential... I read far too much online and was almost convinced of gloom and doom, and then found many kindred spirits who are not having severe se issues. Good luck to you. Hope Sandy was kind to you and yours.
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I read that SEs on AIs often kick in around 8 weeks. I am so pissed, I was really not expecting any problems. Now I feel the aches, the pains, the gloom, was from it. And boy, there are lots of other possible problems. Damn!! I wasn't setting myself up, as I've said my sister only had achey hands now and then during her 5 yrs.
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Itching has finally stopped. I have stopped so many meds made so many changes I have confused myself. But so delighted the itching stopped.
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mommacain: Glad to hear you finally have some relief!
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Mommac, happy you got some relief.
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Been on my Arimedex break predicted for 11 days. No real changes in achiness, stiffness. My back and legs in particular. Shoulders and hand could be more from PT for pre-frozen shoulder. I see MO on Thursday. Think he will put me back or or switch to femara or?? Wish I had miraculously felt much better once off the AI!!!
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Lisa my doctor switched me to Tamoxifin and the pain has subsided quite a lot.
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Ladies, can someone please explain to me how CLARITIN ( allergy med) works for pains and aches?
Thanks,
Mena
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mena- i don't know HOW it works i just know that when i had neulasta shots after my AC chemo i took claritin that day and every day for a week-no pain--( 1 time i only took for a few days and had horrid horrid pain so went to a full week)
that's MY story..sorry that i cannot offer better help!
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MENA - Funny story about Claritin. I go to Univ of Michigan for treatment and they often have visiting Oncologists there from other countries that see you first before your regular Oncologists. I had a delightful Japanese Oncologist during chemo that was very thorough and extremely nice. I was about 2 weeks into chemo when he told me "crarilin" would help my Neulasta and bone pain. I had absolutely NO IDEA what he was talking about. Finally, I remembered reading about Claritin on BCO and got what he was saying. I still laugh about it.
Anyway, he said they have no idea why it works, but it works. He said some doctors have theories, but it won't hurt you so he recommended taking it. I did and pain went away!
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Denise-G As I was reading the word " Clarilin " I laughed! I understood the joke you were making...
Anyway it's an interesting thing to know. Just clarify for me what kind of pains does it exactly help with?
I have pains in my knees and under my feet, but I think those must be from the Cholesterol Med I am
on.
Although at this point, I am not too sure anymore where all my pains come from. I can't sleep so that
makes me achey all over. I really feel like an old lady...LOL!
So, my next question is " Would CLARITIN help with those pains also?" I mean how would Claritin
know what is causing the pains? Right?
Mena
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i found that the claritin worked on BONE pain....
it has been said that if, for example, you have a previous injury or a weakened spot, pain will settle there and i believed it!
just use regular claritin- i even used walmart brand --not the decongestant one tho!
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Haven't been on this thread in a while... Curious... has anyone on arimidex/anastozole had any ganglion cysts? Popping (out of socket it feels) thumb joint? My right hand has suddenly gone a bit wonky and am wondering how common? (have appt next week, so will see what mo says.) sigh
Thanks, all.
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I have 2 trigger fingers in my left hand first thing in the morning but goes away after moving it around for a few minutes
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Skittle~ The tendon in my thumb pops every time I move the thumb.., very uncomfortable! I have awaken in the morning to the end joint of my thumb in a bent poition and can't straighten it without using my left hand to help. I'm right-handed and needless to say, I can barely hold a pen to write. I've given up.., I stopped the Anastrozole last week and have an appt with the onc next week.
Lago~ are you left or right handed? Any trouble with trigger fingers prior to the "ESD"? btw, no cake for me???
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Yeah that sounds like trigger finger. It kind of snaps into place. Mine doesn't hurt that much. No problems ever like this prior to ESD (estrogen sucking drug). I know some folks have had it so bad that they needed a cortisone shot. That usually fixes it.
If your talking about hands… I'm a righty. Otherwise much more left of center
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OMG......I knew that some women experienced hair loss as a side effect - in fact, I met a woman who said she lost more hair on Arimidex than she did on chemo!
So when I started the Anastrozole on September 5th, I also started taking Biotin, 500 mg a day.
But now I seem to be shedding alarming amounts - I have a lot of hair, but it's all over the shower , the towel, the sink - YIKES!
I'm even losing NOSE HAIR!
Anyone else having this SE? -
Blessings I have seen 3 women I know have this issue pretty seriously. I think the only reason why I haven't is I've been taking biotin for years, even through chemo and restarted minoxidil once chemo ended. I was on it before because my hair line started to receded several years before. After chemo a lot of that hair grew back so I actually am doing better than pre chemo.
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Lago, C-squared--thank you for quick responses. Sounds like everyone's so different with se's. (Me, too, left of center.
) but , sigh, right handed and that's the one that hurts. boo hiss.Blessings--sorry to hear of your hair struggles. I've kept mine so far, lucky... Didn't know about the biotin.
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My hair is growing in very thick. It was thick, but fine before all this stuff started. I am taking 5000 mcg biotin daily as well. I haven't much S/E's (thank God) thus far other than joint pain, especially in my right hand in the midlde of the night and I am left-handed.
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I've been taking Anastrozole for 3 months now. I started spotting yesterday and my hot flashes stopped several weeks ago. Anyone else have this happen? I'm thinking I am no longer post menopausal. I see onc next week.
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Msbelle call your gyno. This could be something else other than you coming out of chemopause. My hot flashes were mild on chemo and went away while on Anastrozole. I do get them from time to time but not like I did on chemo. I too went into chemopause but it stuck. No spotting.
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