Aromasin (exestemane) stories?
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Whatjusthappened - I could have written this post! I stopped Arimidex last fall and my doctor has been on me about it, but I said the side effects were just too much. I'm 34, and I seriously felt like I was 95. So I guess when he finally realized I wasn't going to take it, he finally suggested Exestemane. I've been taking it for about 2.5 weeks now and I'm starting to get that heavy, lethargic feeling that I had with the Arimidex. I am having trouble waking up in the mornings again (I normally jump out of bed, ready for the day!) and even slept through my alarm twice this week. For those of you who may have experienced similar side effects, do they subside? Or is this my life now
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Each_day, I empathize with what you're going through. The fact that you had your ovaries out so young doesn't help much, I'm sure. When you started the exemestane, did you start off on the full dose or are you working up to a full dose? I think at 2 1/2 weeks your body is still adjusting, and it's entirely possible that your side effects will improve. A lot of posts I've seen say it can take 3 months or longer for SE's to improve, so my advice is to give it more time (unless the SE's are unbearable of course).
I actually quit taking the exemestane, but I'm supposed to talk to my MO in a couple of weeks and let him know if I want to stay off AI's or try again. I am thinking I might go back on the exemestane, since I'm not really sure I gave it a fair trial. I had bad side effects, but I had a lot of other things going on at the same time and am not sure I can blame them all on the exemestane. To be honest, I don't feel that wonderful even off the exemestane despite some improvements in blood pressure, cholesterol, etc. So I'm thinking that if I'm going to feel like crap anyway, I might as well take the medicine, right?
I wish I had answers for you, but my MO says that more of his patients do well on exemestane than the other AI's. So there's hope!
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I just had to stop, doctors orders, my exemestane due to side effects that did not show up until one month of taking the drug daily. I stopped and did not take it yesterday and already noticed a huge improvement of mood, memory is better and my headaches went away. I had worse experience with anastrozole so I was excited about exemestane appearing to have no discernable side effects but then wham I got hit hard with a headache and increased blood pressure. No bone or joint pain with either one but I am wondering about taking one every two or one every three days to mitigate to the extent possible the side effects. I read clinical trials and the exemestane takes 72 hours to fully metabolize so it does stay in your system and continue working for a while after you stop taking daily, so I wondered about the idea of taking less frequently to get some result as opposed to stopping altogether. Many blogspots have mentioned that folks are doing that AMA.
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I've tried two of the AI's with varying results. Anastrozole was not tolerable as I had every side effect except joint pain. Now just had to stop Exemestane after nearly 30 days trial due to blood pressure spikes, debilitating headaches and memory loss. I was worried I might lose my job if I continued not remembering things I had said just 24 hours before. I'm considering something that would be AMA which would be trying exemestane every other day or possibly every 3rd day to see if that minimizes the side effects. The UK cancer boards have a lot of discussion about this and they are on the national health system so they get these brand AI's for free. When I priced out Aromasin brand here in AZ it was going to cost 1131 dollars per month as my insurance would not cover brand. My experience with AI's has been horrifying and even my husband is saying qualify of life over quantity is desired. My chance of distant recurrence over next 9 years is %5 or less if I'm taking an AI and according to my physician friends that number goes up by 10% so 15% chance of distant recurrence if not taking AI's which is quite a jump. I wish we could find more cancer survivors that have found alternative treatments to the AI's as they are very hard for about 50% of women to take without disabling side effects. I know this figure from the clinical trials of aromasin vs aromadex (exemestane vs anastrozole) where each drug had nearly 50% drop out of the trials due to the horrific side effects. Many women, most women who decide to stop taking them AMA, would have taken one if the side effects were not so terrible; but I don't see any new clinical trials on new molecules that might have presented a better outcome. With 1 in 8 women getting breast cancer in the US, and 50% not tolerating the AI's, you'd think pharma would be incentivised to find an alternative as it's a revenue generating machine for those with hormone positive BC which is 70% of all women.
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KateHanni, my MO has been ok with me taking AI's every other day. I'm sure he would rather the full dose, but when faced with a patient who wants to quit altogether, something is better than nothing. I guess it depends on the MO.
Like yours, my husband is of the opinion that I should choose QOL over risk reduction. He hates to see me suffer with the side effects and wants me to have joy in my life. As well intentioned as it is, It makes it hard to stay the course when your loved ones urge you to quit. My risk of recurrence without AI's is about 20%, and 13% with AI's. So not a decision to make lightly. I agree that we need better options out there for those who tolerate the drugs poorly.
BTW, that's crazy expensive for the brand name Aromasin! Is there actually anyone who can afford that? Some people swear by name brand vs generic, but I've never taken a name brand since I don't believe my insurance would cover it either.
I hope you find something that works for you. Best wishes!
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I began Aromasin on July 1st. I’m overwhelmed with the effect of heat and humidity. And I’m experiencing night sweats. But it seems to be improving and I hope there’s just an adjustment period. I will watch my blood pressure more closely. I’m on Medicare and the brand name preferred by my MO is $80 a month whereas the other AIs are $12 a month. How can that be affordable for most people? Thanks for any resources to continue to study this.
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Beekc, I'm with you on the hot flashes and night sweats! Summer is miserable now. I think I need to move up to Alaska.
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Kate,
How did you know your blood pressure spiked? Could you feel it or do you test regularly at home? I'm sorry about the SE's but it's good to hear you didn't have joint pain. I'm considering trying an AI,but I'm really nervous about SE's after 8 tolerable years on TAM.
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KateHanni, 100% agree with your comments about finding a better alternative to the AI's available today. Especially when the Breast Cancer Early Trialists Collaboration found that up to 50% of hormone positive cancers are, or become, resistant to Endocrine Treatment (ET). That means that up to 50% of us taking the AI may not benefit. I keep scanning the research looking for a test, similar to the innovative Oncotype DX that predicts chemo efficacy, that will predict AI efficacy.
LOSING MY MIND: My experience on AI's is fraught with missed opportunities. My first oncologist prescribed Anaztrozole at full dose from day 1, and by day 14, I was truly losing my mind. My MO encouraged me to keep with it, that it'll get better, but it didn't. So I went on a 30 day hiatus, found oncologist #2 who prescribed Exemestane, and slowly titrated up the dose. This is a good tip that made all the difference and I've been on it for 1.5 years.
JOINT PAIN: Last Christmas I couldn't get up off the floor after wrapping presents and decided to get serious about movement. And it's really helped. This holiday, I got a cortisone injection to treat Trigger Finger, which is helping. My MO never copped to any AI side effects but he did admit to Trigger Finger and Carpal Tunnel.
OSTEOPOROSIS: The DEXA scan at DX showed my osteopenia had become osteoporosis, and I lobbied my MO #2 to address it at every appointment. It took almost a year and a half for me to insist we do something - he really failed me by not taking action earlier. I say this because I'm living the disease and all that it entails- there were times when I could not advocate for myself and needed him to focus. I just recently learned that the first year on an AI is the most detrimental to your bones, and when I'd gone for a second opinion early on, that MO thought she might start me on Tamoxifen, which builds bone, and then switch to an AI. In all the hubbub and decisions and side effects, I forgot to mention it to my MO #2. It was a real missed opportunity. I did receive a Reclast infusion, 1.5 years post DX.
WEIGHT GAIN I ballooned up and nothing seemed to move the needle until I found intermittent fasting and KETO. I proudly reported my weight loss to my MO, who said the damage was already done - that gaining weight even if you lost it- was an increased risk for recurrence. Would've liked to know that on day 1.
Hope this helps someone starting on an AI.
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