Side effects of exemestane (Aromasin)

Posted by Young@65 @happyat65, Feb 12, 2023

Has anyone had higher blood sugar since taking exemestine? Any other side effects. My oncologist changed me to exemestine from anastrozide. I have been on it only 5 days, but the muscle and joint aches are here. Headaches every day.

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Profile picture for mistymar @mistymar

I was put on Anastrazole first, starting about 3 months after finishing chemo/2 weeks after radiation. It took about 5-6 months to get to the point where I was painful all the time - sharp pain that would move around, today the left ankle, then right hip etc. finally at 8 months, he said “you shouldn’t have to live in pain” and took me off. I was classified as pre-diabetic because of an A1c of 5.9. All lipids had been elevated before but had trouble with statins so unsure if Anastrazole contributed to that. About 6 weeks later started exemestane. First 2 months were fine but then I started month 3. Weight gain (no other changes in diet or exercise, just 10 pounds in 1 week - “not a side effect”, mild discomfort in hips and lower back, weakness on standing, extreme fatigue (before the insomnia started), insomnia (currently I get 4-6 hours a night if I’m lucky) and over the last few months, developed a tinnitus in the left ear. While he noted I “looked tired” 4 months ago and we discussed it, the suggestion was that I’m just depressed. He did at next visit test for multiple things that cause fatigue and (good thing) all were normal but that left me with no reason and therefore no treatment. Good things are that I had a mild osteopenia on the Anastrazole and current bone scan was normal (exemestane does have slightly less effect on bone over Anastrazole), A1c now 5.4 and fasting glucose under 100, and only abnormal lipid is mild increase in ldl - all that seems better on the exemestane. Overall, exemestane MAY be better than Anastrazole for me. I may ask about going to the every 2-3 day schedule - still doing research on that. It’s always a tough call because as many others have indicated, this is all “rock vs hard place”. Do the meds with all the inherent side effects but decreased chance of reoccurrences or take the chance off them and hope for the best but maybe better quality of life. Unless this becomes intolerable, I think I’ll stay on because I certainly don’t want to go through all this again if I don’t have to.

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Thank you for sharing, very similar to what I experienced with Anastrazole but I am just starting Exemestane, so I'll wait and see.

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Profile picture for Rubyslippers @triciaot

I am totally unqualified to suggest a medical treatment, but you might want to ask your doctor about prescribing a drug for vasodilation as migraines are often caused by vasoconstriction and evidently AIs cause this. There may be contraindications why this won’t work. But maybe you want to ask. (See some of the info I found below).
I had been looking at this type of issue, but I’m on tamoxifen - it’s a long story, so I’ll stop here.

Search for info on these topics on the web, if you’re interested:
“In general, vasodilators are drugs that relax and widen blood vessels. This widening of blood vessels, also known as vasodilation, can improve blood flow and potentially help alleviate certain migraine symptoms.”
“One class of vasodilators, called CGRP inhibitors, are prescribed for migraines because they block the effect of CGRP, a molecule involved in migraine pain and inflammation that can also cause vasodilation.”
“Aromatase inhibitors are hormone therapy drugs used to treat hormone receptor-positive breast cancer. These medications work by lowering estrogen levels in the body. Some women taking aromatase inhibitors may experience migraines or worsening of pre-existing migraines as a side effect.
While the exact relationship between aromatase inhibitors, migraines, and the use of vasodilators in women is not fully detailed in search results, it's possible that vasodilators like CGRP inhibitors may be considered in this context to:
Reduce migraine frequency and severity: CGRP inhibitors, by blocking CGRP, which is a key contributor to migraine, can potentially reduce the frequency and severity of migraine attacks.
Manage vascular-based migraine: The vascular hypothesis of migraine suggests that migraine attacks involve the release of vasoactive peptides like CGRP and other vasodilators. Vasodilators like CGRP inhibitors can help counteract the effects of these peptides.”

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Thank you for all the info!!!

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Good video by an oncologist:
Aromatase Inhibitor Side Effects Explained: What No One Warns You About! (MUST WATCH)

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I too started exemestane last month joint pain, extreme tiredness and now teeth painful and dry mouth (which can be a sign of diabetes). Has anyone had this side effect? Oncologist has me off meds for 2-weeks to make sure this new side-effect is due to medication.

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Profile picture for 16bernie @16bernie

I too started exemestane last month joint pain, extreme tiredness and now teeth painful and dry mouth (which can be a sign of diabetes). Has anyone had this side effect? Oncologist has me off meds for 2-weeks to make sure this new side-effect is due to medication.

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@16bernie
Joint pain, fatigue, insomnia

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I had terrible time on Anastrozole and changed to Exemestane 2 months ago. I took prescription NSAIDS for a month after Anastrozole before changing to reduce the terrible inflammation, pain, aches and tendon problems. The first couple of weeks on Extemestane I had dizziness but that has stopped. I have to take it after a full meal or I have stomach and GI problems. I take magnesium with low dose melatonin for sleep. I had hair fall at first with each medication. It was at the 18-20 months range that I had terrible side effects with Anastrozole, so I am waiting to see if things change with Extemestane. I feel so much better than on Anastrozole, no aches, no terrible tiredness and no bladder spasms. Keeping fingers crossed 🤞

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After chemo and radiation, my hair came back about 90%. After being on Extemestane for maybe a year and a half, my hair thinned drastically. Hoping once I get off the Extemestane, my hair will fill back in.

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The above posts have been very useful to read. I started Exemestane 11 weeks ago and the side affects are getting worse. Foot, leg,hip and back pain.
But recently the hand pain and finger locking has started and I’m very concerned.
I had a laminectomy 2 years ago to decompress L3/4 in my lower spine and I’m very worried that tbis drug will make my condition worse again.
My breast care nurse wants me to persevere and I have an appointment with my surgeon in 3 weeks. I am going to mention taking the pill 3 times a week and see what her thoughts are.
Thankyou again.
We battle on together.

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I had joint pain with both Anastrozole and Exemestane. Primarily, on Exemestane, my liver enzymes spiked to almost lifer failure! Next trying Letrozole.

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Profile picture for alanna57 @alanna57

The above posts have been very useful to read. I started Exemestane 11 weeks ago and the side affects are getting worse. Foot, leg,hip and back pain.
But recently the hand pain and finger locking has started and I’m very concerned.
I had a laminectomy 2 years ago to decompress L3/4 in my lower spine and I’m very worried that tbis drug will make my condition worse again.
My breast care nurse wants me to persevere and I have an appointment with my surgeon in 3 weeks. I am going to mention taking the pill 3 times a week and see what her thoughts are.
Thankyou again.
We battle on together.

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@alanna57 a few thoughts from someone closing in on their 5 years… symptoms in the beginning are evidence that the medication is depleting estrogen, which is a good thing. Your pain does not bode well for successful completion. Your particular aromatase inhibitor works differently than the other 2. I know several women who stopped due to loss of hand use. I was only on exemestane for 3 weeks and had to stop for similar reasons. Ask to take a 3 weeks break if they allow it, then try another. I’ve been on all 3 starting with anastrozole 10 months, exemestane 3 weeks, letrozole 9 months ?, then back on anastrozole.

Things I did to get through the pain: 2 rounds of PT including for my feet, 1 round of pelvic floor PT, still doing monthly manual PT, monthly massage, twice monthly acupuncture in the beginning, gentle chiropractic, a manual treatment called orthobionomy, took an aromatase inhibitor musculoskeletal pain class at Jacksonville Mayo, bought oofas and vionics for my foot pain, use voltaren on hands and feet and sometimes slather it on my “long bone” areas of arms and legs. Walking and exercise does help but was impossible for me in the beginning. I consulted with a nutritionist and the complementary care DO.

Ask if you can use Claritin, tart cherry juice or capsules, omega 3 / fish oil, check your vitamin D, magnesium glycinate. My doc lets me take Tylenol daily to help sleep pain. I cut out sugar and reduced processed carbs. I took Cymbalta finally which worked for about 10 months but it is a horrible drug to quit for about 50% of people. I’m one of those 50% and am doing a hyperbolic taper to safely stop which will take a couple of years.

Mentally, I determined that the pain wasn’t going to actually kill me, that I can do hard things, that it was important to me to finish this treatment as it’s the best we know of at this time, that my body wasn’t going to dictate what I could and couldn’t do, that I would do my best to care for it and give it what it needs.

I’m fortunate because I have things others don’t: a mental health background with a specialty in trauma and the body, training and practice in meditation, a spiritual foundation, access to exceptional complementary care providers, studied nutrition, am self employed and could reduce work hours for self care, a spouse to support and encourage me, and the financial means to access everything I needed. If any one of those are missing it could have changed my trajectory so go gently with yourself. This is a marathon, not a sprint and it takes self-compassion and resilience which is different for each person.

I’ve managed to get my pain to a daily 2/10 on average with it creeping back up at night of late. It was 8-10/ 10 in the early days. My personal rule is any pain that on a daily average is 5 or above on a 10 scale, needs addressing either by a treatment or by a break and then a switch. My onco always left tamoxifen on the table as a last resort.

Please don’t suffer too much. There are many options. One of my nurse practitioners didn’t know as much as the others. I refused to see her and now I alternate MD and nurses that know the suffering and offer quick resolution.

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