Switch from letrozole to exemestane

Posted by harkey @harkey, Aug 16 1:33am

Hi, I recently took a 6 week washout period from letrozole, and then started exemestane about a week ago. The last 2 nights I awoke with excruciating Charley horse in my right quadricep. The pain and muscle swelling lingered into the daytime hours, making it difficult to even drive.
Has anyone else experienced these terrible leg cramps?
I'm terrified to go to sleep tonight!
It makes the unpleasant side effects I had while on letrozole seem mild, and I am debating going back on letrozole.
Thank you for any guidance!
Xo, Harkey

Interested in more discussions like this? Go to the Breast Cancer Support Group.

Profile picture for glamma007 @glamma007

Hi 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

Jump to this post

Hey 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.

REPLY
Profile picture for glamma007 @glamma007

Hi 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

Jump to this post

Getting 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!

REPLY
Profile picture for glamma007 @glamma007

Hi 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

Jump to this post

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/

REPLY
Please sign in or register to post a reply.