Worried about continuing with Letrozole

sunnijim

Hi,

I was diagnosed with metastatic breast cancer 41/2 years ago. Because of the advanced metastasis I was put on Letrozole, Palbociclib and Venetoclax. The drugs have kept me alive and continue to do so, but the Letrozole is really taking its toll on me. I'm 54 and feel like 80. I am barely able to walk and that is with a walker, I'm not able to walk unaided. I am really considering changing to another hormone blocker, with the hope of better quality of life, coz this ain't it. My dilemma is that I would end up being put into mainstream hospital care rather than the one on one I have had, and the scans etc have all been covered by the trial. It would be good to have some feedback from anyone who has gone through same or similar. Cheers

moderators

Hi @sunnijim, we're so sorry for the worries that have led you to our discussion boards, but we're glad you've found us. Are you currently a participant in a clinical trial? Because you are a metastatic patient, routine scans should still be covered by your insurance even if your treatments are modified. If you are suffering terrible side effects from the Letrozole, it is definitely worth speaking with your oncologist about switching to a different aromatase inhibitor or to a SERD hormone blocker for easier tolerance.

sweetp6217

Hello Sunnijim,

My history may not be close to yours, but after I had chemo, surgery and radiation, they put me on Letrozole. The intention was to take it for 5 years. My oncologist believed it to be the best choice for me and didn't think other choices were best for me. For at least a year, I felt like a zombie; was physically and especially mentally "not there"" at work. I really needed to work, but the drug really changed me and not in a good way.

I made a personal choice of seeing my oncologist to discuss it (2 years, 4 months in) and he reluctantly allowed me to stop taking it altogether. I would never have considered stopping any medication that he prescribed without first discussing it with him. Stopping this medication came with a potential trade-off; the possibility of gaining a few more years of life were gone. If I had continued, I would have been shown the door at work. I tried to get disability, but it was denied because cognitive issues are not allowed for some careers.

My history is very different from yours but I hope that you can discuss this with your oncologist team or doctor to help you improve. P.S. I was 55 when my treatments started. Also, before I stopped taking that medicine, I got evaluated in order to get the right therapy (mentally). Speaking of, it was really difficult to find health professionals that had a cancer history. Others may have a hard time connecting with those who have been through everything. It was worth the effort.

jayelbee

Hello @sunnijim,

So sorry to hear of all that you have been through. It is a lot. My story is stage 3 bc survivor diagnosed 7 years ago in August. Have been on letrozole almost six years. A recent lumbar MRI showed multilevel disc disease in what I would characterize as a rapid deterioration in the last two years. Currently, I have a lot of nerve pain from my lumbar spine. I believe that letrozole is to blame because everything in my body is drying out, eyes, vagina, nose, skin, etc. I’m sure that you know.

Earlier this year, my oncologist agreed that I could reduce letrozole to every other day. I am hoping that my eyes, skin, nose, joint pain, hot flashes, and fatigue will get better on the lower dose, but my serum estradiol will still be less (lowering BC risk) than it would be if not taking letrozole at all. I am looking into starting a GLP-1 as an alternative to letrozole. It is a risk but the nerve pain is too much, leaving me partially disabled.

Hopefully your oncologist can give you some options like a SERD, a different AI, or alternate dosing. I was in a trial for Camizestrant, a SERD, briefly but I felt awful on it. Camizestrant made me very anxious and not myself at all. My joints were better, I think. It may be similar to giredestrant, if that is an option in your case.

I have not found any study results on letrozole alternate dosing regimens and how that affects serum estradiol, survival, and side effect profiles. If anyone knows of studies with published results, that would be great to know.

All the best to you, @sunnijim. May you be guided to the best answers and care for your precious self.

tougholdcrow

@sunnijim You might want to see a palliative care person who can help with these symptoms. They specialize in this. Maybe ask your oncologist about getting palliative care.