Letrozole alone after a year of chemo - SHARE Metastatic ...

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Letrozole alone after a year of chemo

Shumawy profile image
13 Replies

Hi everyone, my mom is currently being treated with only letrozole after a year of chemo which didn't work very well (she is 100% Er and Pr). She took it for 5 months after taxol and it worked much better, now she has a follow-up Pet scan after another 5 months. I wanted to know if any of you have successfully returned to hormone therapy alone and for how long (before taxol she tried fulvestrant + ibrance for three years, then afinitor + exemestane, and xeloda. Thank you!

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Shumawy
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13 Replies
nonna70 profile image
nonna70

I take Letrozole (and Xgeva for bones) for 6 months. I had some side effects but they are better now. I cannot take chemo because of kidneys. Hope your mom does well with the Letrozole.

bikebabe profile image
bikebabe

Everyones circumstances are so individual so you need the medical input. My scenario is that Ive been on Letrozole only for 5 mths. Uptil dec 2023 I had been on palbociclib for 2.5 yrs but had to defer it initially because of covid/post covid chest and then major heart surgery and its aftermath. So was somewhat surprised that my scans showed no change. The explanation was that Letrozole (hormone blocker) was doing the bulk of the work in keeping me alive and palbo was delaying the onset of progression/symptoms. Back on palbo but thrn need to stop it again for further ops. Wish you well.

Bettybuckets profile image
Bettybuckets in reply tobikebabe

Oh jeez not further ops? Let’s chat some more off line if you feel like sharing.

love2golfwell profile image
love2golfwell

Sending hugs and prayers for good scan results for your mom. It would be wonderful if this treatment would work alone as it would seem to be a less toxic protocol. Please keep us posted.

TwithBC profile image
TwithBC

I think you’re asking if anyone has stopped hormone therapy (for chemo) and then jumped back on it. I have not but I can not imagine it not working or being a problem! In fact I have read that taking a break from letrozole in particular after it ceases working actually allows your body to react to it again! As far as Letrozole alone — or any AI alone—I personally have been on it (Letrozole) only for 7 years. It’s definitely a viable option. The vet very best to your dear mother … and you.

Hazelgreen profile image
Hazelgreen

I refused chemotherapy five years ago when my breast cancer returned because it kills so many of the healthy cells along with the cancer cells. I was 73 then, and thought I needed all my healthy cells. After 600 mg ribociclib was added to letrozole, my cancer markers returned to the normal range.

Since then, I have moved to a schedule of 5 days on meds with weekends off, and that seems sufficient to keep my cancer from growing. It does not eliminate the cancer which is throughout my body (spleen, skin, bones, lymph system) but nothing has done that.

Now, at 78 years old, I'm happy to have the weekends relatively free of fatigue. I'm experimenting with reducing ribociclib by one pill every second day throughout the week, provided my cancer markers stay in the normal range but that is dependent on my having access to lab results which I don't always have.

I've been to Italy, but am unfamiliar with its medical system. I hope you are able to work with your doctor to do what is best for your mother, regardless of her age. Good luck be yours!

Shumawy profile image
Shumawy in reply toHazelgreen

Hi Hazelgreen, before chemo my mom stayed three years on palbociclib and fulvestrant but had to stop palbociclib due to severe mucositis. Unfortunately here in Italy you can't use the cyclins a second time if they have been interrupted, but I'm sure it would work again. Now it's been nine months with letrozole alone, in February the Pet was good, we're waiting for the one at the end of June. My mom is fine, she has no problem and let's hope it's a good sign (she’s 78!)

Hazelgreen profile image
Hazelgreen in reply toShumawy

Hi Shumawy,

Research has shown that ribociclib is effective in cases where palbociclib is not. They are not equivalent drugs! However, I don't know whether or not ribociclib (Kisqali) causes mucositis in some people. I forgot to mention above that my cancer is also in my lungs so I have impairment there as well.

I think your mother is lucky to have you! I too hope her scan remains positive. At our age, we cannot expect our bodies to function as well as they once did😍😜. Hugs, Cindy

TammyCross profile image
TammyCross in reply toHazelgreen

The oncologist I saw last week at MSK said there are no studies showing that going to a different CDK4/6 inhibitors after one failed is effective. It is just observational, anecdotal. Didn't work for me. There might have been a head to head comparison of Ibrance/palbo vs. Kisqali/ribo as first line of treatment, or it could be that they are comparing Ibrance and ribo based on clinical trials for each and getting better results with Kisqali.

Hazelgreen profile image
Hazelgreen in reply toTammyCross

"Treatment with ribociclib (Kisqali), and an alternate endocrine therapy, after progression on a prior CDK4/6 inhibitor showed a 43% reduction in the risk of progression or death compared with placebo and endocrine therapy in patients with hormone receptor (HR)–positive, HER2-negative unresectable or metastatic breast cancer, according to results of the randomized phase 2 MAINTAIN trial (NCT02632045)."

TammyCross profile image
TammyCross in reply toHazelgreen

Oh, dear. I was afraid of that. I was feeling so much better after seeing the MSK oncologist vs. my Columbia onc. Then I read up on Columbia oncology research and I saw the MAINTAIN study. I guess Columbia was involved. I would rather believe the MSK doc is up on the research -- she seems so much sharper. Also, she said I didn't have three treatment failures, just one, because the CDK 4/6 inhibitors were pretty much the same. So that is not true. Having progression on ribo was another treatment failure.

Hazelgreen profile image
Hazelgreen in reply toTammyCross

I'm sorry if I added to your distress! I don't recall your age but, if it is at all close to mine, consider whether you may feel best without the side effects of meds in your system.

I'm currently trying to reduce both my heart meds and my cancer meds. I don't wish to play "Russian roulette" with my survival, but I also don't wish to cope with unhelpful medications.

"Treatment failure" is not a phrase I use as I don't expect "success" (i.e. elimination of cancer metastases).

LadyPastor profile image
LadyPastor

Nothing but Ibrance and Letrozole for 6 years and still cancer is holding.

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