Aromasin (exemestane)

So very sorry to hear your having such a hard time of it I'm just starting to take my Arimidex for the first time tonight I'm praying I will be lucky to not have side affects or if I do just not very bad ones I'll keep you in my prayers

@kathysway Kathy - You may just be fine. Our bodies all react differently. I've never been very good at drugs. I was doing fine with the letrozole for about 2 months and then the joints started hurting more and more. What has helped me handle a lot of this is keeping up with walking and doing stretching and core exercises. Meditation helps somewhat as well.

I found the joint pain was helped by gentle yoga and special exercise classes for cancer thrivers. Hopefully this is something you can try.

I've taken anastrozole for 9 months - hands hurt SO much!! Oncologist is stopping my drugs for 2 weeks. I think she will be switching me to Exemestane. Said the joints won't hurt as much. Anyone have this experience?

Hi @trixie1313,

I’m tagging @gwinter @francine6829 @ja5747 @guntherbear as they’ve written about Aromasin and might be able to offer more insight.

You might also be interested in reading these two recent studies about the efficacy and safety of Aromasin (exemestane):
– Long-Term Follow-Up of the Intergroup Exemestane Study https://ascopubs.org/doi/full/10.1200/JCO.2016.70.5640
– Clinical utility of exemestane in the treatment of breast cancer https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4455847/

@kanaazpereira By any chance, are there any articles in layman's terms? And would there be any articles of infiltrating ductal cancer with neuroendocrine differentiation?

Hello @trixie1313,

I noticed your lastest post and did google the terms, "infiltrating ductal cancer with neuroendocrine differentiation" but did not find anything helpful (especially in layman's terms). Your post caught my interest because I say the word "neuroendocrine." I have had three surgeries for neuroendocrine tumors in the upper digestive tract and I know this is a rather rare disorder so I thought I would check in with you and perhaps learn a little more about your history of breast cancer.

Please feel free to share your health journey as you are comfortable doing so. I would especially like to know if you have been examined for any other NETs in your body (thinking of the Gallium 68 scan), etc., or any other blood work specifically for NETs?

I look forward to getting to know you!

@hopeful33250 My first lumpectomy was infiltrating ductal carcinoma with erosion of 1 of 3 cancerous nodes. Prior to that, I was given a body scan and bone scan. Following my first lumpectomy, I asked for an MRI (which is not standard protocol) as I was concerned about the unaffected breast. Had I not asked for that, we would not know that there was a second tumor, i.e. the infiltrating ductal carcinoma with neuroendocrine differentiation. And thank goodness, the pathologist examining that tumor did the correct staining or this would not have been known at all as it is rare, but the pathologist knows their stuff! I have not had any other blood work or any Gallium scan. Six months ago I had my first PET scan which was completely normal. The most recent PET scan noted the area in my previously affected breast that on recent mammogram showed a cluster of microcalcifications. Both the radiologist from mammogram and the radiologist reading the PET scan have suggested close monitoring and so that's where we remain at this point - mammogram and PET scan again in 6 months.

@trixie1313 I am glad that you have been following up and that you are advocating for yourself. That was a great decision to insist on the MRI. I take it that this MRI was on the unaffected breast?

You might find it helpful to read about neuroendocrine tumors. The carcinoid cancer foundation has a great website with lots of good information that you might find helpful. Here is their website, https://www.carcinoid.org/.

@hopeful33250 The MRI was on both breasts prior to noting the tumor on the same affected breast, just on the inner upper side. The first tumor was on the outer side.