Does anyone have advice on Letrozole?

Posted by mj65 @mj65, Nov 15 12:44am

I was diagnosed with ILC in July and had a lumpectomy in my right breast followed by 4 weeks of radiation. Im starting Letrozole next week. Im worried about side effects but more worried about the return of the ILC if I dont take it. Thanks for any suggestions or advice

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

Profile picture for mj65 @mj65

@pinkjjj
Is Ovestin prescription? Thank you for your reply.

Jump to this post

@mj65 yes it is unfortunately, but it works. 10 days straight, then twice a week, but you have to keep up the twice a week. Otherwise, start again.

REPLY
Profile picture for ndozier @ndozier

I’ve been on letrozole for 14 months. I have joint pain, the worse is in my hands, feet, and knees. I also have skin sloughing inside my cheeks occasionally. It’s more annoying than anything. Hot flashes have been moderate and keeping me from sleeping. I’ve found that walking and exercise seems to help a little with the pain. Ibuprofen and my corn bag helps the most. I don’t want to take a chance on my BC coming back, so I’ve decided to continue on. I was afraid to start also and I had my medicine for a month before I started taking it. Stay strong and I pray your side effects are
Minimal.

Jump to this post

@ndozier Wow! so glad to hear that a sister survivor experienced skin sloughing inside their cheeks too! Mine is on the inside of my bottom lip. I was wondering what was going on...even discussed this with my dentist hygienist who suggested a less abrasive toothpaste (I am using Colgate Optic White). I was "wondering" if this was a S/E from the Anastrozole I was on.
So, I am not the only one who had sloughing...never saw this in postings before.
Well, starting Letrozole this Tuesday...will see how this goes!
Thank you all dearly for your positive support! The very best to all!

REPLY
Profile picture for mj65 @mj65

@briarrose
I havent started going to a support group yet because radiation zapped my energy but Im going too. I had Hodgkins Lymphoma in 2001 with 6 months of chemo and side effects continued long after. Knowing the chemo worked and Im almost to my 25 years since I was diagnosed I believe in the science and I know what it can do. That said Ive read alot about ILC and it seems research is newer for this type of breast cancer than the others. I guess thats why Im interested in knowing how other women are actually feeling while taking Letrozole.

Jump to this post

@mj65
So very happy to hear it's been 25 years free of your lymphoma!! Blessings!!
I haven't started a support group either but plan to.
I will start my Letrozole this Tuesday. Will keep you posted and you do as well once you start it. I know it took about 2 to 3 months before any S/E's kicked in with the Anastrozole...wonder if it will be the same with Letrozole.
The very best of luck to you!

REPLY

Diagnosed with same ILC. Started Letrozole in February. Was more anxious over an AI than surgery and radiation. Some minor side effects, but overall doing well. Side effects fatigue, foot pain. Overall feeling good!
Best of luck!!

REPLY

I was just talking to a friend who was diagnosed with BC about the same time as me, just over a year ago. Our cancer pathology, treatment, and experiences are different, yet so much is the same. We were joking that there should be a “Girlfriend’s Guide to Breast Cancer Treatment” with real talk about all they never tell you, lol. Any way, I’m a high risk for recurrence so I take Letrozole and Verzenio. To be honest, the side effects suck for me. I am “low key” jealous, as the kids would say, of those responding with few symptoms, but that just shows you everyone and every case is different. You can try it and change your mind later - that would be my “sister advice”. For me, it causes FATIGUE, brain fog, hot flashes, joint and tendon pain (especially hands, feet, knees, now hips, ok.. shoulders, too), dry everything. The Verzenio adds in sometimes-severe GI issues, restless legs, more fatigue and brain fog… I am not a picture of resilience at the moment, and struggling with exercise and water-drinking enough. Working on diet too, as these all will help. I am further complicated because I had fibromyalgia before all this and I am thinking those symptoms have become “super-charged” by treatment, as many symptoms are the same. But I am 56 and have kids in high school, and one about to get married and start his family… I want to be here for it all, so I am doing it and working with my doctors to manage symptoms in various ways. Acupuncture helps me significantly but not completely with joint pain, hot flashes and a bit with fatigue. Oh, and with restless legs. Bottom line: try it. Everyone is different. You can always change your mind later! Good luck to you!

REPLY
Profile picture for mj65 @mj65

@auntieoakley I tried to get more answers with further lab testing but they didnt get enough tissue they said. They tried twice. There just seems to be conflicting results with Leterzole and sometimes womens cancers return even after taking it.

Jump to this post

@mj65 sadly there is some cases that return even after we take every possible treatment or prevention. Even in those of us who lived a very “healthy” lifestyle.
I was given letrozole for a short time but it was contraindicated with another medicine I was taking, so it was back to anastrazole for me.
For some of us, it is a benefit to know that we did everything we could to prevent it. I never have to look back and wonder if it came back because I refused a treatment.
The great news here is, there is so many tools in the box to treat us. If one tool doesn’t work for you, then maybe there is a better tool out there, or another one on the way.
I would never refuse a medication based on someone else’s side effects. What have you got to lose by trying it?
You might not have any problem, if you do, are you comfortable asking your doctor for a change in medication?

REPLY
Profile picture for Chris, Volunteer Mentor @auntieoakley

@songfamily2025 I would like to say that this statistic might be your statistic, but it isn’t always the case. This is why they do the testing to figure out what your personal benefit will be from endocrine therapy.
Did you have any of this advance testing or was this just a number thrown out for you?

Jump to this post

@auntieoakley I agree with you. It is my statistic, I wish it isn't always the case. I just fill out the form on line and got that percentage. No advanced testing required.

REPLY
Profile picture for songfamily2025 @songfamily2025

@auntieoakley I agree with you. It is my statistic, I wish it isn't always the case. I just fill out the form on line and got that percentage. No advanced testing required.

Jump to this post

@songfamily2025 without tissue testing, this is really just a guess. Your numbers might be better than this. Have you talked to your doctor about testing, this should be covered by insurance?

REPLY

Good recommendation. I will show to my doctor the " PREDICT" results and to see what is her opinion. Thank you so much.

REPLY
Profile picture for teacher22 @teacher22

I have been on Letrozole for 15 months and have had no side effects except for dry eyes. I wish you the best.

Jump to this post

@teacher22 I have been on Letrozole for 7 months and I also have dry eyes. I have not seen that dry eyes are a side effect but the coincidence is great. Nice to know you have the same issues!

REPLY
Please sign in or register to post a reply.