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Nervous about switching from Letrazole to Exemestane
Hi - I have been on Letrazole for 2 years (invasive ductal carcinoma, node positive, did chemo and radiation, double mastectomy and oophorectomy...was diagnosed right after my 46th bday). Recently I've had neuropathy for the first time (it moves around/switches which limbs it affects...strangest thing). Ruled out metastasis with spine and brain MRI plus chest CT and bone scan (insurance wouldn't cover PET). Anyway, my oncologist said to try a "drug holiday" to see if the letrazole could be causing it. The numbness is noticeably better after a week off the letrazole (but not gone). He suggested I could switch to Exemestane to see if it solves the problem but I am nervous to make the change -- sort of feels like the devil you know is better than the devil you don't? My question is -- has anyone had a bad experience with Exemestane (beyond the obvious hot flashes/joint pain as I'm used to those?). I'm specifically nervous about the "mild androgenic effects" that it can have. I have lost my breasts and just finally grew my hair back out -- I don't want anything to make me feel any less feminine than I already do at times. Thanks for anything you can share!
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I agree with you, whole heartedly.❤️
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2 ReactionsI was on a Anastrozole for 10 months and started to have pain in my hands and trigger fingers and had to have 2 trigger finger surgeries then I switched to Letrozole and my cholesterol went up. Went off of it for a month with no change so now I am on exemestane and I have to have 2 more trigger finger surgeries and my joints ache all the time! This entire process has been difficult. Has anyone else had Bilateral breast cancer ? It’s supposed to be only 2% of all breast cancers but my sister was diagnosed 3 months after I was with bilateral breast cancer. All of our genetic testing came back negative! Also my mom has had breast cancer in both breasts but 8 years apart. This cannot just be a coincidence but I’ve got no answers from my doctors. Plus my brother had colon cancer at 50 years old
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5 Reactions@huskey7
Has anyone in your family had genetic testing?
Even with genetic testing, there may be some genes that are not tested.
Plus, they say that this is only 10% of the population with gene mutations.
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1 ReactionMy two sisters and I have had genetic testing and all of it came back negative . I know that they tested over 65 genes but they are always coming up with new data so my oncologist is having me restested. I am still waiting for those results. My biggest concern is making sure my 21 year old daughter and 23 year old son are monitored closely if it is hereditary.
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1 ReactionI tried letrozole (greatly increased my tinnitus), then exemestane (again bad tinnitus), the 1 exemestane every other day (still bad tinnitus), then anatrozole--no significant problems! I did develop slight trigger finger (middle R hand), but not enough to bother me. Web will tell you that Letrozole is the strongest AI.
I strongly recommend trying all AIs before giving up.
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4 ReactionsHi MistyMar,
I'm pretty new here - learning and lurking until now. It's heartening to hear the stories of so many women dealing with the same or similar situations. My admiration to all!
My 73rd birthday is in September. Since I've been pretty much keeping my diagnosis to myself, which is ridiculously isolating, I'm particularly encouraged to hear from so many contributors in the over-65 demographic. I've followed the traditional course of biopsy, surgery, radiation (proton) and endocrine therapy. However, I'm left in a quandary as my current Onc, who was "on the fence" re: chemo, is now telling me, weeks later, he does not support it for me. Not because it will not provide benefit (my Oncotype dx is very high) but due to age, comorbidities (I have a mild ILD and an autoimmune) and whatever other factors he has gleaned over just 2 visits. I know it can take a huge toll on an aging body, making it difficult to judge the risk/reward ratio. I'd love to hear from those who "chemoed" and what the experience was like for you. Certainly never thought I'd be advocating for Chemotherapy for myself but here we are. I want to give this my best shot, not be left with coulda/shoulda and hopefully see my very young grandbabies reach kindergarten! Onc has never spoken with my pulmonologist or done any kind of geriatric workup. He is highly regarded in the area so I'm trying to give him the benefit of the doubt but aside from a lackadaisical approach (I think he may be retiring soon) I'm just not getting the vibe he is out for my best welfare. So, today I start the hunt for a new Oncologist. Apologies for the windy reply. I've been holding thoughts in for far too long!
On another note, has anyway come across any credible information on DIM supplements, the use of Curcumin, etc.
Thanks for listening, Laura
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4 ReactionsHey Laura. I'm a 73 year old diagnosed with idc in Oct 2024. Lumpectomy, chemo 4 rounds tc, recommended due to oncotype 26, radiation 19 treatments. Now on letrozole for 2 months do far. I'm on entresto for heart failure, alendronate for osteoporosis, and crestor for high cholesterol. On a side note I've had multiple sclerosis for over 40 years. This is not my first rodeo. Diagnosed with idc when I was 54. Went through the same treatments 19 years ago. I also want to see my grandchildren grow up. Didn't want to do the coulda/shoulda dance as I already know it can come back even if you do everything. But, I felt 19 years was a gift. I want 19 more. At our age we are caught between a rock and a hard place. Not an easy decision. Quality vs quantity? I want both.
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4 ReactionsGetting a second opinion from another oncologist makes sense. Although I'm satisfied with the care from my oncologist/PA, I debate if I should also see another oncologist. I've watched some breast cancer presentations online and sometimes wish I could consult with one of those oncologists who seems to practice with cutting edge research in mind. I'm thinking of the use of biomarker blood work with early stage breast cancer.
You wondered about the experience of those of us in the older age group with chemotherapy. I was diagnosed with invasive ductal breast cancer in October 2024 at age 74 (I'm now 75). After a lot of diagnostic work throughout the fall, I elected a double mastectomy followed by breast reconstruction surgery for implants. Although my clinical stage diagnosis was 1B (I think), my pathology stage showed I had a more aggressive cancer (grade 3). Sentinel node biopsies came back clear during surgery. Unfortunately, my Oncotype DX score was 35; therefore, chemotherapy was recommended.
Since I also had pre-existing atrial fibrillation, heart issues were a factor in addition to age. I had 4 infusions of cytoxan and taxotere from Feb - May. There are other chemotherapy regimens using even more powerful drugs but I think my age alone would probably cause most oncologists not to recommend them.
I have been seen by my cardiologist during my treatment so Echo's and EKGs have monitored me. Frankly, I'm more worried about the damage to my bones from chemotherapy, my blood thinner (Eliquis) and now an aromatase inhibitor than I am worried about chemo damaging my heart.
Having said that, I will also note that steroids and chemotherapy drugs have done a number on my cholesterol and glucose. That is something that you and your oncologist might need to review given your own medical history.
As to your pulmonologist and oncologist not consulting with each other, welcome to modern medicine where direct consults like that are rare. You often must be your own advocate, reviewing your own relevant history to each doctor.
I also used to take DIM supplements but had to stop taking all supplements once I began chemotherapy. I seem to recall pros and cons for taking DIM after treatment. Since I am estrogen positive, any supplements affecting estrogen seem to be questioned. Something else to research.
I got through 4 rounds of chemotherapy at age 74. The worst part was the cumulative major fatigue, hair loss, and yucky taste. I was lucky in that I did not have severe nausea or other GI symptoms. I did develop thrush and some heartburn but these were fairly quickly resolved.
The chemotherapy was not as bad as those damn tissue expanders and the drains. Would probably have said no to reconstruction if I'd known in advance what tissue expanders would feel like for months. I know everyone is different with those expanders.
I encourage you to seek at least one more recommendation from your oncologist and perhaps to also review what your other specialists might recommend. They may have experience with other patients who also had a similar cancer diagnosis.
Sending you healing thoughts!
Laura:
Here is one report on the use of DIM with tamoxifen:
I3C & DIM: Adjunctive Therapy for Breast Cancer Patients on Tamoxifen.
I'd note that this is from a naturopathic medicine point of view:
https://ndnr.com/oncology/i3c-dim-adjunctive-therapy-for-breast-cancer-patients-on-tamoxifen/
@penny21 I had a reclastbone infusion in Oct and had the same thing