aromasin side effects
I've been on Aramosin for about 5 months and instead of getting used to the side effects, I think they are getting worse. Has anyone experienced head rushes on Aramosin? I told my husband, it's like getting slapped in the face without the pain. It can be very disorienting. Aramosin hasI also messed with my hands. I'm hoping to connect with someone who may be experiencing the same. My primary care thinks that if the side effect isn't listed on the drugs website then it doesn't exist. Its super frustrating
Comments
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Hi yancha,
I experienced something very similar while on Letrozole. Looking back, I think your description is pretty accurate - " getting slapped in the face without the pain."
While on DD Taxol, I experienced racing heart and heart palpitations. It was severe at times but diminished in the couple of months between completing chemo and starting AI. About 5 days after starting Letrozole, I spent the Thanksgiving weekend with my boyfriend. While washing dishes, I started having that head rush feeling you describe, but I thought it was just the racing heart from Taxol. All of a sudden I could hear him talking to me, but couldn't understand him. I was trying to tell him something was wrong but he said I was incoherent and mumbling. Then my legs gave out and I fell forward and hit the top of my head on the kitchen counter. Had two black eyes for 3 weeks. My boyfriend helped me to the couch and a few minutes later I was just fine. I didn't pass out because I remember everything, but it was scary.I called the MO, twice, but never got a call back. It wasn't until reading some of the posts on these discussion boards that I realized it was likely the AI and not just a lingering side effect of chemo, although it's possible they were related. The point is, be aware of what you are feeling, and be your own advocate. If you are having these symptoms, be very mindful when you drive or other activities. I had just driven from central jersey to the shore two hours before the incident and I am so grateful that it didn't happen while I was driving. I wished my MO had explained to me the range and severity of side effects I might experience before I took the drug. I probably would have taken more precautions. To be fair, I think what we are experiencing is not all that common, so doctor's just aren't aware.
FYI...the warning label on Letrozole says that it may cause dizziness, etc., be careful driving or operating machinery until you know how the drug will affect you. But who reads that crap? It's the same warning label printed on every medication.
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HiTexJerseyGirl-
This is the first discussion board I've ever joined. I didn't feel comfortable joining the groups the hospital offers, so I'm so grateful you replied so quickly. I finally realized I do need a support system, People not dealing with this don't understand, and I get tired of complaining, or at least thinking, all the time about the aches and pains,
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Don't sweat it. I think you will find that there is nothing that you might feel, think, say or do where you won't find somebody on the boards who identifies with you and will lend a non judgmental ear or shoulder. I've read the discussions here since I first got diagnosed nearly 13 months ago. I only recently started posting because I had such a bad experience with Letrozole that I knew I had something to say that might benefit someone else. There are those who say people who experience difficult side effects are in the minority and only people who are having trouble post on these boards, everyone else is out living their lives, blah, blah, blah. This simply isn't true and the data doesn't bear this out. You are in good company here. You keep complaining and someone will be listening. If you decide to stick with it, you'll find encouragement here. If you decide it isn't worth it, there are others who will support you as well. I'm not sure how many others have experienced the head rush thing, but achy or painful hands? You betcha.
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It's fascinating the different approaches our docs take. My MO knows I work at a keyboard 40 hours a week and made certain that I was not having problems with my hands. I don't read anywhere that specifically mentions hands, but I know that joint and muscle pains can be caused by Aromasin. I think that part of the problem with the listed side effects is that these are new drugs and the population that has taken them is relatively small (compared to something like tamoxifen for example) so what happens in reality is not yet known. I have been having numbness in the soles of my feet! I'm not sure if that's Aromasin or just sitting more because it's winter. Whatever it is, if that's my only complaint I'm happy with it.
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Arimidex was awful for me, trigger thumbs (that eventually got painful), bloating, and joint aches. I switched to Aromasin and now...it's been great, knock wood.
If the side effects persist you could try a different AI. Often switching to another resolves the problem.
C
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Hand pain falls under the general side effect arthralgia - joint/muscle pain. It is a documented SE for all AIs. I wish my MO had explained to me what this could mean. I read on the package insert that comes from the pharmacy that Letrozole can cause achy joints and muscles. I have been an athlete almost all my life so I am familiar with achy joints and muscles. I didn't think it would be a big deal. But it really is more like arthritis, in every joint, including my fingers and wrists. Not being able to use my hands not only impacted my quality of life but my job as well. I should have been told.
But you bring up a more interesting point, about the drugs being relatively new. If you go back and look at the clinical trials for AIs, the cohorts were largely made up of older women (avg age 60) who were already post menopausal when they started the AIs. The side effects listed are based on those trials. Once the FDA approved them, they became widely prescribed to all post menopausal women. What researchers are now finding is that the side effects are more severe for women whose menopause was surgically or chemically induced. This information was presented at the San Antonio Breast Cancer Symposium in 2011. The other really interesting thing that came out of that symposium, is that when researchers polled MOs about AI side effects, 80% said most patients experience mild or none. But when patients were polled, 65% said SEs were moderate to severe. MOs believed full compliance was around 80%. But researches using pharmacy data found that 35% are not fully compliant. What pisses me off, is why are so many MOs ignorant about this data? They should not be allowed to prescribe these drugs if they are not educated as to the effects on patients' lives. This has a HUGE impact on treatment plan decisions. I was 49 and pre-menopausal at dx. Had oncotype of 19. Really struggled with whether or not to do chemo but two of 3 MOs recommended it. Had I known that chemo would likely put me in to early menopause and the SEs of AIs could be life altering compared to Tamoxifen, I may have made a different decision regarding chemo. I think there is no doubt now that I would benefit much more from hormonal therapy than chemo, but can't turn back the clock. All I can do now is help educate other women.
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Hi TexJerseyGirl-
Your side effects sound awful! My head rushes are disorienting but the episode you had must have been terrifying. My oncotype was also 19 and my MO scared me into doing chemo. Scared might be a strong word, but she made it seem that even with that score, not having chemo would put me at a much higher risk of recurrence. I don't know if she would have perscribed the ALs if I had opted out of chemo, but now I wonder if quantity is better than quality. I love how the side effects are played down. Achy joints and muscles? You're right about the arthritis.
I saw a PT about my hands earlier this week and he was pretty straight forward. Therapy probably wouldn't help much. He suggested cortizone shots and, if that didn't work, surgery to cut the A1 pully that the tendon sheath is catching on. One thing that I'm aware of now, that wasn't explained by any of my doctors earlier, was that killing the cancer wasn't going to be the end of it. Being "cured" didn't mean returning to normal. How are you coping at work? I'm lucky enough to be able to be at home. I'm the primary care giver for my 87 year old father-in-law. I don't know how I'd handle it with a job outside the home.
I'm grateful to be able to complain here to women who understand. At least here, it doesn't feel like complaining.
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TexJerseygirl.....Really interesting. When questioned my MO confirmed that 50 percent of women do not complete the 5 years due to SE. This is at a major NYC teaching hospital. I believe we all need to make well informed decisions about any medication we take. They all have potential side effects. I general I feel most docs minimize the SE. Maybe if more women spoke up there would be research on better treatments that are better tolerated. IMO 50 percent compliance is not good enough!
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