Advice on Exemestane

I was prescribed exemestane from the start because my oncologist said her patients complain of less side effects when on it. I’ve been on it for 2 and a half months and have minor joint pain. If I am sitting for a longer period of time I will stretch before getting up and it does help. Another side effect that appeared more than a month later is burnt mouth syndrome. Feels like my tongue was scalded. Trying to figure out what foods trigger it. But it’s tolerable, more of an annoyance. Everyone’s reaction is different but I hope this puts you a bit at ease.

Thank you for sharing. It's hard not to over think this after having severe pain with the first med. What time of day do you take it? I was worried about the morning if it did cause dizziness about driving to work and actually performing at work. Then on the other hand, another side effect could be trouble sleeping. I already have issues sleeping. It was originally suggested to take the first med I had (Anastrozole) before bed. But if exemestane could cause sleep issues, taking before bed didn't seem like the thing to do. Did you start off with the full dose every day when you started the med? I do understand everyone's reaction is different. Just trying to gather some information.

Yes I am on full dose and I take it in the morning after breakfast.
On a side note, I was just discussing sleep with my integrative oncologist and he suggested magnesium glysinate to help relax and sleep. My PCP also recommended taking magnesium for that reason. Also doing meditation and yoga may help.

I was on exemestane for 7 years with little side effects. I had some weight gain, hot flashes increased slightly and some joint soreness in my hands but nothing that became chronic. I took it in the morning just so I didn’t forget and felt that overall it was very tolerable. I did full dose and would suggest that if you are thinking about a half dose run it by your doctor. Wishing you the best.

Thank you for the information. It's good to hear your experience. You are the first person who didn't indicate hair loss as a side effect. Alot of the comments I've been reading online in various forums like this has included hair loss with this drug. Can I ask the situation for which you were on it for 7 years? I was told 5 years. Have you had any reoccurrence of breast cancer? On another note, I wasn't indicating I was thinking of a 1/2 dose. Again I had read some posts about people just starting this drug doing lower doses for a short time and building up to the full dose in hopes of less initial side effects. That's why I asked that question. Thank you again.

Thank goodness for this forum! It keeps me from thinking I'm going crazy. I was anastrozole until the migraines did me in. The reclast infusion made me so sick I couldn't function let along gat out of bed for several days. Of course, that sent me into migraines again. I'm now waiting the headaches out in order to begin exemestane. I have chronic Lyme Disease that flares up at least once a year. I have had this for 15 years so I know what that is. Does anyone else have chronic Lyme and what can I do? My doctors don't seem to know. In the meantime I'm barely functioning and have 5 more years!!!!!

I have been dealing with bc for 26 years. My first occurrence was small and no lymph nodes involved so we did a lumpectomy and tamoxifen for 5 years. 20 years later a reoccurrence of mixed lobular and ductal cells so I had a double mastectomy. The exemestane was for that occurrence. I didn’t have chemo as my onco score was low. However I’m now dealing with mets to my gut and was on ibrance with faslodex for 18 months. I just found out that we need to move on to another therapy. Will find out what that is next week. For me the exemestane was easy to tolerate.

I am 74 by low ecto score lumpectomy no bc in lymph 13mm removal 12:30 left breast no radiation and no anti hormonal (yet) I am thin, osteopenia. 8% chance cancer will come back
Progestetone/ Estrogen combi patch for years. Got endometrial cancer a year ago. Had hysterectomy a year ago. Tiny cancer. Everything out. 5% chance reoccurring. I get checked now every 6 months
..I am leaning toward no anti hormonal drugs. No radiation
No chemo because of low echo score. I am checked for RA every month and take methetrixate. Swelling in hands gone. No joint pain. Moving on with living. Can't take being in crippling pain ..methetrixate is working for me.

I have been taking exemestane (25mg) for 9 months. I take it shortly before bed, and I started off on the full dose. My side effects are thankfully minimal; just some joint stiffness in the morning that is gone in less than 30 minutes. It has not affected my sleep at all, and I have not experienced any hair loss. I will tell you that the first AI I took was anastrozole, and after two months I developed trigger thumb (thumbs would lock in a bent position and I’d have to manually pop them straight; it was moderately painful). I took a break from it, and the trigger thumb quickly improved. Then I tried letrozole and the trigger thumb immediately returned. Exemestane was the last AI to try, and thankfully, does not cause me any real problems! As you already know, everyone reacts differently to these meds, but this was my experience and exemestane works for me. I hope it works for you, too!
***Oh! I’m adding to this comment because it just occurred to me to say that age may have something to do with one’s reaction to different drugs. I am 47. In the space between letrozole and exemestane, I tried tamoxifen with disastrous results. It caused severe anxiety and depression, which I have zero history of. It very nearly ruined my life. A friend who is only 31 had the same exact experience with tamoxifen. But I know it is often very well-tolerated in others; perhaps menopausal state affects this? I am pre-menopausal, but receive Zoladex injections to “shut down” my ovaries. My friend is simply pre-menopausal. Hmmm. I passionately believe this needs to be studied! Anyway, love to everyone out there.

I just completed my 5 years of AI. YEAH!! It's a long journey - but you can do it. I was on anastrozole for the first 11 months - then was switched to exemestane. My hand join pain on the first drug was intolerable. Mostly my side effects were insomnia & hot flashes, my hair thinned a bit - but not really noticeable. I take CALM for sleep in gummies - it's basically magnesium. Also any AI just sucks the moisture out of your body - so dry hair/skin, etc. My worst side effect from that was chronic constipation. Well - 9 days after stopping the AI, no more constipation - it's wonderful. They asked me to take it for another 5 years - so 10 years total, and I refused. It was only going to reduce my chances of reoccurrence by < 3%. 5 more years is just not worth it to me. I'm 68 now. I had stage 1 with lumpectomy, no lymph node involvement, 21 radiation treatments, no chemo. I'm hoping the insomnia will resolve itself eventually.