Aromasin /Exemestane Side Effects ruining my life!

My past posts have mentioned how depressed and awful I’ve been feeling. Well, I have had a major awakening. Read on…

Symptoms: Extreme fatigue, lack of motivation, no interest in anything, poor eating habits, sleeplessness, mood changes, thinning hair, headaches, Intermittent joint pain, Morning fogginess, Mental fogginess, weight gain, memory problems, depression. Don’t want to even go to the gym. Can barely keep my eyes open during the day. I was eating so much bad food that my cholesterol was extremely high (I never had problems with this), difficulty socializing.

All medical tests were negative (heart, thyroid, pulmonary, sleep disorder). I have been to a therapist, psychiatrist, internist, sleep specialists, oncologist, nutritionist, etc.

The last visit to the sleep disorder/pulmonary specialist said something interesting to me:

He said that the Aromasin /Exemestane I’m taking is probably cause of all symptoms. (I was on Arimidex before I got the second lump in other breast.)

Well, I started researching on the Internet and found so many other women who have had the same side effects on Aromasin! Many stopped it and after 3-5 days all symptoms disappeared. I am taking a 5-day break from the medication, to see if I feel any better. I haven’t told my oncologist, ‘cause I know what he’d say. (Don’t know why he didn’t tell me that is was the meds making me so fatigued.)

Also being triple negative, I’m not even sure these meds will make a difference.

I cannot take this medication for the next 3-5 years. It has totally ruined my life! I question the value of treatment that has such violent side effects. Doctors should take this drug and experience what it does!

Unbelievable!

14 Replies

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  • Hi SeeSwee6 , I'm very sorry to hear that you're having these terrible side effects. Have you considered getting a second opinion from another doctor? Please keep us updated on any response, as well as updates on how you're feeling.

  • From the Triple Negative Breast Cancer Foundation:

    tnbcfoundation.org/survivor...

    Survivorship

    You’ve finished your treatment. Now what? This question can be very challenging. Since there’s no long-term treatment for you, you may worry you aren’t doing anything to protect yourself. Questions about cancer coming back or becoming metastatic may distract you.

    Fears of Recurrence

    With triple-negative breast cancer, the risk of a metastatic recurrence, the breast cancer coming back outside the breast, is strongest in the first five years after your diagnosis. Aggressive cancer cells may travel from the breast to other parts of the body. These cells move through the blood- stream and the pathways that carry fluid away from the breast to the lymph nodes, called the lymphatic channels. The goal of chemotherapy is to kill these stray cells and lower your risk of recurrence.

    After five years, your risk of recurrence goes down. In fact, as time goes on, your risk for recurrence may be lower than that of someone treated for estrogen receptor-positive breast cancer.

    If you still have breast tissue after surgery, the risk for developing a new breast cancer in the same or opposite breast does not decrease over time. Keep up with regular doctor’s appointments and mammograms to find any new breast cancer.

    Most women with triple-negative breast cancer never have a metastatic recurrence or a new cancer.

    Survivorship Care Plan

    You can take control of your follow-up care. Get a treatment summary and create a plan of action for your post-treatment care, also called a survivorship care plan, with your healthcare team and primary care provider. A survivorship care plan should include information about potential long-term side effects of treatment, screening and prevention recommendations, emotional and financial issues, follow-up care referrals, support resources and ways to improve overall health.

    Depending on your doctor and the breast cancer stage, you probably will not get more tests and scans after treatment unless you have new symptoms. Large clinical trials show that women with early-stage, triple-negative breast cancer who have routine CT scans and blood tests to check for cancer recurrences during the follow- up period do not do better or live longer than those who do not have the tests. Tests do not pick up most recurrences, and finding them sooner rather than later will not help you live longer. Regular testing can lead to extra tests and surgeries that cause anxiety and could create more medical problems. Extra tests do not help extend life in early-stage breast cancer, whether triple-negative or any other type.

  • Very interesting and good info. I am also PALB1&2 positive (not BRCA). PALB gene has more likelihood than general population of getting pancreatic cancer. I am getting annual testing for that as well.

  • My oncologist does not want me to take an aromatase inhibitor for my stage 0, ER+. DCIS. She says that the 2% recurrence risk reduction it will provide me with is not worth the myriad of side effects that you detailed.

    We've also explored Tamoxifen and Evista and found that their side effects could be dangerous for me. My surgeon is also in agreement.

    I had a lumpectomy and radiation. My risk of recurrence is now 5% in that breast and 10% in the untreated side. These numbers are in my favor. Now that my treatment is officially behind me, I'm looking forward to my side effect and cancer free future!

    R in NYC

  • I'm so sorry you are having all of these side effects, you sound so miserable. I have many side effects myself but not as extreme, but I am not on aromasin. I am on perjeta, Herceptin and tamoxifen. Is there anything else they can put you on besides this drug? I will pray for you and hope that you may find another drug with less side effects.

  • ive been on it for 3 mths...ive gone gluten free to help with inflammation and its helped. ive been active and dealing well with out. speak to your oncologist there has to be something else

  • Thank you all for your input. I am going to ask my onco if I can go back on Arimidex. I had slight joint pain, but then it went away after a while. I can deal w/that.

    I have a nutritionist now, and am planning to go back to the gym. I'm on day 3 w/o Aromasin. Have more energy, feel more focused.

  • SeeSwee6... sounds like you're feeling that you're on a better medical path. I like the idea of going to a nutritionist & will explore that option myself. I'm on day five of my medication holiday and my body is still hurting, but it's better & my sleep is a bit better too. Hoping that in a few more days, I'll feel like my New Normal again. Keep exploring options and being in charge of your health!

  • I'm tripple neg but they don't have me taking anything. I too am tired most of the time. I question how much of mine is just because I have hardly moved in two years because of surgeries and treatment.

  • I'm ER+ and double neg. my onc suggested radiation OR a 5 yr. regimen w/an inhibitor. I declined both. It's been 3 years since I finished chemo for ovarian cancer. I declined due to the recurrence risk being just slightly less and not wanting to take anything more that will make me miserable and the risks w/radiation. My dr. agreed to continue with follow-up tests.

  • Have you seen an oncologist who specializes in breast cancer? If you have not gone to a Comprehensive Cancer Center for a second opinion from a bc specialist onc, you might want to do that. CCC is a designation given to cancer centers that meet certain criteria and they are listed by state at the website of the national cancer institute. Most medical insurance will cover a second opinion evaluation and your own local onc should be willing to refer you for one. I was seen within about 10 days of my onc calling to refer me.

    Balancing the risk factors vs feeling crappy is such a personal decision! I can tell you that I was on Femara (similar to Arimidex) for almost five years and while I had some aches and pains I felt no where as lousy as you describe. And I have stage IV bc with bone mets! I did take an Rx sleeping med every night for around a year in order to sleep. I just could not get enough sleep without it.. Celebrex helped the aches and pains. I ended up being on more meds for side effects than cancer drugs, lol.

    You don't mention your age. The older we are, often the less aggressive the cancer is. Obviously that does not apply to everybody and sometimes a cancer is more aggressive than expected, but as a generalization, it certainly runs true.

    (And as a patient, I do find it odd that you have been put on a hormonal treatment when the cancer tests TN!) That's one reason I started my note to you with suggesting a second opinion from a bc specialist!

    Hope that you will have peace with whatever you ultimately do decide!

  • Seeswee6: if you look back through the many comments on aromatase inhibitors on this site, you'll see that while some women experience side effects, others do not. Many women take them without ANY problems, others can tolerate them since the SE's aren't severe. As we've mentioned before, simply switching brands can make a world of difference.

    For many women, especially those with high risk cancers, AI's offer an "insurance policy" of sorts, a way to lower their odds of local and even distant recurrence. Many of us feel fortunate to have a proven targeted therapy available to us.

    But, it sounds like you've had a very difficult time and perhaps some/many of your issues are a result of the meds. Please be honest with your doctor. Find out if the AI is greatly lowering your personal risk of recurrence. Tell her how difficult it is for you to comply when the side effects are so severe. There's room for a discussion here, and perhaps a different drug or strategy. And, in the end, it's a matter of personal choice. Only you can decide if taking these drugs is worth it for you.

    Good luck going forward and, most importantly, feel better!

  • I am an ovarian cancer survivor. I had a lumpectomy for breast cancer in Dec. 2016. My onc recommended radiation and/or one of the estrogen inhibitors. I declined both. I told him that I had already been thru the chemo regimen and would take my chances w/o radiation OR the hormone inhibitors. I also read that radiation can cause damage to the heart, lungs and/or rib cage. The hormone inhibitors basically can cause us to be miserable for the next 5+ years. I will be 70 in July and I won't risk any of this. Yes, I'll risk the rest but many get breast cancer again, even on the hormone inhibitors and radiation. Reduces the risk but does not eliminate the risk. You're doing the right thing.

  • My oncologist put me back on Arimidex - have no side effects. I also wonder about being TN if any of this really matters.

    In the meantime, I've been taking regular vitamins including B12 and am feel better. I also went of Prozac. My energy level is returning. I am eating healthier, and getting out more. I am going to weight management program, too.

    Maybe better weather is a factor, but I'll take feeling good for now!

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