For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Hi Peggy, thanks for your kind words and empathy. I live in Madrid (Spain). My case is handled by the Spanish social security (which is very good and would be better if they invested more in it, as all of us are demanding). I probably could change my radiotherapist but I would have no guarantee I'd get a more sympathetic one. I might also arouse some bad feelings if the present doctor warned the new one about me being a person who searches the Internet for answers (horrors!). Most doctors seem to disapprove of that, regardless of the source you are researching. I stick to reliable ones like this one or Mayo clinic, but this doctor didn't give me a chance to say that. As I won't see her for a year and will see the gynecologists (there are two of them) in October, I will mention this to them and see how they react. It's also true that here the S.S. doctors are grossly overworked and underpaid (especially since Covid), which might also explain that poor attitude. But it's certainly not the patients' fault!
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Thanks, Seagoddess!
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JinnyNH, Sad that when you have reputable information you've found from reputable sources on the internet that you are not listened to. At least you have 1 doctor who listens and takes you seriously. And I agree that Covid has stressed all the medical systems. But that doesn't account for not listening. Good luck! HUGS!
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jinnynh, I'm sorry you had that experience with your doctor. You are absolutely correct about the side effects. How else are the drug companies supposed to know about side effects if we don't report them? I hadn't heard about the hemorrhoids, and I thankfully never got them when I was on Tamoxifen.
Carol
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Hi Sunshine99 & Pontiacpeggy: Thanks for listening! It certainly makes me feel better that other people agree with me and I'm not just being paranoid! Doctors, especially doctors who are treating life-threatening diseases should receive more training to show more empathy (or at least SOME empathy) and forget about their egos. Also, when a patient reports side effects that are not known, they should report them, there should be some sort of list to forward to the pharmaceutical companies. Probably it's all a question of whether or not the pharmaceutical companies want to invest in research, especially if it means reporting unwanted side effects. What they should be investigating is treatments without all these side effects, which can really ruin your life. That's a whole new can of worms.
Regards, Jinny
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I just started an AI drug with major reluctance given all the toxic side effects. I am planning to try but not ruin what is left of my life dealing with side effects. Kind of a crapshoot and individual decision.
For those of you who have developed carpal tunnel syndrome while on AI drugs did you have symptoms of CTS before you started any one of the aromatase inhibitors? Did any of you stop the AI drugs and have your symptoms resolve?
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racheldog I’ve been on all the AIs. Never had CTS before. While I had severe side effects on all of them, Arimidex affected my arms and wrist much worse than the others. That’s what made me quit. I need my arms. I’m on letrozole now.
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Hi racheldog: No, I didn't have CTS before taking Arimidex, which I started taking at the end of May 2021 (11 months ago). Taking into account that I'm 76, and cancer supposedly spreads much more slowly in older people, I'm seriously thinking of stopping the treatment. What's the point of living till I'm 99 if my QOL is lousy? I will consult with my gynecologists in October. I'm sure they'll say, "Oh, no, don't do that!" but the final decision is mine. Maybe I could get a mammogram more often or something like that. There should be alternatives! I also take some supplements, supposedly anti-cancer: curcuma, quercetin, graviola, and 4Life transfer factor. I figure that, while they might not help, they won't harm me. Oh, I also found out today that my sleeping problems (I wake up every night around 3-4 am and do not sleep well after that) are also probably another side effect of Arimidex. How many more, I wonder? Does anyone know the statistical probability that my kind of cancer (DCIS) will come back if I don't take arimidex? Despite my age, I still work and my work involves a lot of typing (I'm a freelance translator). I NEED MY HANDS!
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Thanks to those who answered me. I have just started Letrozole and I am doing this AI every other day. That may be the best I can/will do to try to lessen any side effects. It is my life and my decision and I was not going to go on them at all but, in my heart, I had to give them a try. If sleep becomes awful, if they accelerate cardiovascular issues or retinal issues, or more arthritis then I already have I will stop. I think any older woman really needs to weigh QOL vs. feeling miserable and not being able to manage your life. Especially if you live alone.
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RachelDog, I'm sorry you are having so many problems. I started Arimidex at 69 and had virtually no problems. I was on it 5 years. My QOL was not impacted. I took Claritin (regular) most of the time to help with creakiness in the morning and I took Fosamax to protect my bones. No problems with those either. I know there are many women who do not have problems. But also many who do and I'm sorry you are one of them. Good luck! HUGS!
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Thanks Pontiacpeggy. I too am 69 and have started this AI every other day. So far that has been sort of tolerable and I plan to check with my University based oncologist about this next week. I am starting to read lots of entries about not doing these every day. Wish there were more studies on this. Taking the letrozole around noon and so far, sleep has not been impacted. Feel a little "hot" a few hours after I take the AI (that I can put up with) and a little foggy or dizzy but wonder if I am making myself think that is the drug!. On the day I do not take the AI I take Tumeric, and a host of other vitamins. Different new normal since breast cancer.
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I've added glucosamine to my pile of supplements. After my previous zometa infusion, I developed pain in my R jaw joint. My dentist said it didn't look like osteonecrosis (yay!), but referred me to an oral surgeon. The OS discovered that I had dislocated my jaw at some point in my past, and I had blown out my articulating disc. The glucosamine is supposed to help boost synovial fluid in my joints. I'm hoping it will help with the random joint pain I get from the anastrozole too.
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I am taking Anastrozole for the last 5 years, and one year of Tamoxifen before that. Mainly I started with hot flash which coincided with menopause. It went on for a couple of months, then nothing else happened for a few months and then I started to put on weight. I started to take care of myself and put on only 14 lbs in 4 years. During covid, I did more exercise and went health food crazy, and lost all of those 14 lbs! Felt amazing until 2022 and bam!! Got another breast cancer, had the surgery 7 weeks ago, and now going for chemo. I did put back 2 of those lbs in the last 7 weeks, but I am determined to lose them as well!
I go for a bone density test every two years, and so far, not much has changed!
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Nipab,
We’re you on Armidex when you had your reoccurrence
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beginagain22, yes, I was. But this cancer is not a recurrence, it is new. The last time was ER/PR+ve, HER2-ve, this time its triple negative on another breast. I was 90% sure that I will not have cancer when I went for the biopsy, as I was on Arimidex, little did I know my DNA had other plans!!
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Wow, that is a gut punch. I am sorry. I didn't realize that this was a new primary while on treatment. I am glad you were being followed closely to find it.
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Hi nipab: Sorry to hear about your new cancer. It raises even more the question of whether it's really worthwhile to take these harsh treatments that cannot offer guarantees that we won't get cancer again. All the side effects for naught. They tell us we are --if not safe, at least safer--but is it true? I am still considering ceasing the anostrozole and am looking for statistics about relapses and recurrences. I find the following: "For patients having a lumpectomy with radiation, the risk of local recurrence ranges from 5% to 15%. Breast cancer may develop in the patient's other breast, but only in about 5% of cases. If this happens, the cancer in the second breast is not considered a recurrence, but a new primary breast cancer. It can also be a different type of breast cancer." This is from an oncologist at Johns Hopkins, so I think it's reliable. If 15% of women have a recurrence, that means that 85% do not. Is it worthwhile to bear all the side effects to prevent a 15% risk. I really wonder....
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jinnynh, I felt the same way when I got it the second time. But I knew my case is unique, I am one of that 15% who got it again within 6 years, but 85% of people live their life without another cancer or at least not get it again for 20+ years. Now I have gotten a mastectomy this time so hopefully, I can live without the word oncology for a long long time! I was perfectly fine on Anastrozole and still am for the cancer I am taking. Very few side effects
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Has anyone acquired symptoms from arimidex (or any AI) 9 months, or longer, down the road?
I did not have any symptoms for 9 months and then started with some back pain and joint pain in November. I also had started taking Zetia 6 weeks before and suspected that was the culprit so stopped for 6 weeks. It took about those 6 weeks for the joint pain to settle down. I started taking the zetia again at 1/2 dose and then increased to a full dose. Well, the joint pain returned two-fold. My fingers are sore sticking in the morning, stairs are scary, hips are screaming. I stopped the Zetia again and after three weeks, things are worse, not better. the MO thinks it's from the arimidex and not the Zetia because "only 3% of patients reported joint pain with Zetia". She has suggested I stop the AI for a week and has assured me that if the arimidex is causing the joint pain, that my joints won't be screaming in a week. She also didn't think it was typical to suddenly start with symptoms that far out from starting, but still wants me to try the vacation from the arimidex.
Also just had my cholesterol checked and all my numbers increased!
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I guess there are no guarantees that any treatment will prevent recurrence. However, maybe the treatment I had the first time gave me 12 years that I wouldn't have otherwise had. Or maybe it helped me know that I did what I could the first time. I think if I had not had chemo or taken the AIs the first time, I'd be thinking "if only I'd done XYZ treatment the first time, this wouldn't have progressed to Stage IV."
None of us knows if or when we may get cancer. We just do the best we can with the information we have at that time. I'm not saying anyone is doing this, but don't let anyone guilt you into opting for or against treatment. It's YOUR cancer and YOUR body.
Carol
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Hi dulcea - most of my pain from anastrozole is trigger finger and in my wrists. I’m also having should pain, but think it’s from mastectomy weakening my muscles. Surprisingly, my cholesterol has improved and I’m no longer taking medication for it. I did just have a hip replacement but that was due to a condition that I had before my BC diagnosis. Are you doing physical therapy for your physical ailments
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Thanks cardplayer (and stage IIB sister).
I am so jealous that your cholesterol went down! I have been fighting this for a while. Statins are terrible and clearly the zetia doesn't even work, and red yeast rice gave me severe heartburn. I'm not sure what other options there are. I just feel like I'm doomed. I have acquired the "trigger finger" issue but its in the lower knuckles of my hands. Maybe the combination of the two medications started all of this because I was fine prior to the zetia
I am not in physical therapy currently but did it for two months for range of motion for my lymph node side and I currently do an exercise class at the local YMCA twice a week as well as walk a lot.
Take care.
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dulcea - I did a couple of sessions of occupational therapy on my trigger finger after an injection didn’t relieve the pain. The fingerexercises really helped and I have a little brace that I wear on my finger at night (and hide from my cats) that seems to have calmed it down.
Take care.
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Reply to nipab, dulcea and sunshine99: Obviously, there are no guarantees. I started the carpal tunnel syndrome around 1 1/2 months ago, but in one month it has progressed to having to wear a brace at night to keep my wrist straight and thus, lessen the numbing of the hand. This started about 9 months after taking Arimidex.
Today I could talk to the gynecologist and, boy, what a difference from the other doctor! She actually listened to me and was sympathetic about my side effects, though she also said they might not be side effects. Her advice was to go on taking Arimidex and try to get the tests on my wrist done earlier and, if possible, operate as soon as possible. She did not agree with reducing the dosage and said all the other hormone therapies were likely to have the same side effects. But she also said that I had to weigh my QoL against the possibility of cancer recurrence should I decide to cease the treatment. She respected that it was my choice only. When I asked if I would get thrown out of the preventive program she laughed and said, "no, of course not: You'd still get all your check-ups and nobody would scold you for your decision." She checked my type of tumor and said it wasn't the worst kind, but neither was it the most harmless (whatever that means). So the ball is in my court. I sort of figure, what if I get the carpal tunnel operated on and it comes back, or I have to get operated on in the other wrist because of the Arimidex? I'm still mulling over my decision.
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Dulce, I take statins and also think the combo of AI and cholesterol meds are causing many issues. I went off statins for a while tried a new med and it was worse. My cholesterol is also worse and my a1c is worse and my osteopenia is worse.I'm in miserable pain every day and night.
Jinnynh, sorry but I disagree with yourdr. While it's true most of the side effects are similar, bone and muscle aches, hot flashes, insomnia, Arimidex is much worse on the wrists and arms. My dr recommended carpal tunnel surgery too and I thought no way, not before trying a different drug.
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jinnynh, interesting that it started many months after starting arimidex. I guess I'm not alone here. We have to be thankful for the months we had with no issues.
jrnj, I too suffer from increased cholesterol, higher A1c and I am now osteopenic. My MO assured me the arimidex has no effect on cholesterol but that's not what I have read. I see you are on your third AI. Have you taken a break from it ever? What do you do for the pain?
Coincidentally, I had my yearly physical the day after my MO visit, and coincidentally again, my PCP is a rheumatologist. They drew blood for a multitude of autoimmune tests and all have come back negative so far. They did send off for a specialized autoimmune test too, which tests mostly for lupus but includes other autoimmune diseases. I even considered this might be breast implant illness, but my ANA was negative and that is usually not the case with BII. No inflammation at all! So, it looks like arimidex might be the culprit.
This is just astonishing to me and seems to have come on so quickly. It is widespread throughout my body and very painful. I am a very active person, but now I'm afraid to walk downstairs and feel like I already need one of those raised toilets because my knees scream when I sit down! Thanks for letting me whine.
Aleve used to take away the pain but sadly, no longer does. I will admit to taking a half a pain pill left over from my surgery last night. Even though it worked, I don't want to get into that habit.
I have been reading here a lot about this joint pain and other side effects from the AIs and it seems there is hope when people try another medication or take a short break and go back. I am determined to take an AI but I don't want it to ruin my QOL. Please.
Hang in there everyone!
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jrnj: From my "research" on the internet, the alternative hormone therapies seem to be either prescribed only after 5 years of Tamoxifen (Letrozole, Exemestane) or for advanced stages of cancer or metastasis (Fareston--not recommended for people with heart issues like me--or Faslodex). The first two also "attack" your bones. There is also Evista, which is not specifically anti-cancer but supposedly for osteoporosis. I was on those kinds of drugs for over 10 years (Fosamax, Bonviva) and all they did was actually make my bones more fragile, though the densometries came out lovely. I stopped taking them 10 years ago (after breaking a bone in my foot) and changed my diet (see Saveourbones.com), so I wouldn't dream of going back to them for something they are not even meant to treat. My bone densities did not get worse after stopping them. I've almost decided to stop Arimidex. I will see the gynecologist in October so we could discuss this again and she would have a recent mammograph to check out.
Dulcea: yeah, nice I had a lot of symptom-free time, but now the symptoms (wrist, fingers) are progressing so fast that I am really alarmed (I am losing strength in my thumb, can hardly press a tube of toothpaste). If I continue to take arimidex, who can say what will happen to my wrists/hands even if I get operated on? And why should an operation be considered an acceptable side effect? As I already have osteopenia, arimidex can only worsen it. I don't know what my next densitometry will reveal (it's not due for another year).
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jinnynh, I'm not sure what you mean by alternative hormone therapies. If you mean Letrozole and Exemestane they are also prescribed for early stage and preventative. I've been on all of them and am on letrozole now. My Dr. prescribed exemestane first because he said he's seen the least side effects with it. But I tried it first and had a lot of side effects. And Drs are split on Tamoxifen. Some still prescribe it, but some don't because there are studies that show AI's are more effective. I was pre-menopausal and Sloan recommended ovarian suppression and AIs. Good luck with your decision.
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Hi: I finally stopped Arimidex 4 days ago. My thumb is giving me problems at night (throbs, it gets "stuck") and is partially numb during the day, despite a lot of exercise and self-massage. I may go back to the physiotherapist for some more shock-treatment; that seemed to help. I still cannot see how such side effects can be considered tolerable. A friend suggested I ask for echographs in between the yearly mammogram (one mammogram every year, 1 echograph at six months). I will suggest it to my gynecologist but if she doesn't agree, I can always ask the private gynecologist to prescribe one as an extra precaution. I will have to go back to him anyhow because the Spanish social security doesn't think it's worth the cost to do cytologies on older women- we´re supposed to be outside of the risk range. That's what I thought about BC but it turns out I was wrong. In fact, it seems a typical older women's disease. But costly to detect. If I hadn't paid for the first mammogram out of my own pocket (and the biopsy), I would still not know I had BC.
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Hi all, I just started on Anastrozole and am going to put this thread on as a favorite. I don't like the SE I am getting, hot flashes, worse insomnia and hurting bones. I cut down to every other day based on a few posters on here who mentioned that. Helps with the SEs for sure. I really am not convinced that feeling like this for 5 years is necessary. My doctors at the VA are pretty convinced that it is necessary but aren't really good at explaining why. I wish I didn't feel so confused and didn't waver between taking / not taking this for the next 5 years. I felt pretty good recovering from chemo, and rads didn't affect me much, so by end of Feb I felt really good overall. Now, end of April, I sure feel the worsening of overall good feeling from the Anastrozole. Ugh.
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