Letrozole

[Miffy49]

Question, has anyone ever just taken letrozole alone? I am prescribed ibrance 125 as well since Sept 2018. However I'm tired of the side effects! My Dr doesn't want to lower dosage of ibrance since my tumor continues to shrink. That's good because I miss more doses of it than I take and I've been warned if I continue to skip doses then the meds may quit working. Anyone have any input on this subject!?

[Hidden]

Hi,

I take Letrozole in conjunction with Zoladex injections and Zometa infusions. I have never been on Ibrance. If you are concerned about the side effects I would have another serious chat with your oncologist and see if you can lower the dosage to a more tolerable level. You want the drug to continue working for as long as possible, and I suspect it may not if you skip doses.

Sophie ❤

[Barbteeth]

Hi there

I agree with Sophie about requesting a reduction in the dose

I’m on 100 mg Ibrance..only took the high dose for 2 weeks..my oncologist has only one patient who tolerates it..the rest of us are on 100 or 75 mg

If he or she won’t reduce your dose I would seek another opinion....you shouldn’t have to suffer these side effects when it’s been proven that lower doses work the same

As you say if your skipping lots of the medication surely that’s counterproductive?

All the best

Barb xx

[mariootsi]

I took letrozole for almost 5 years following initial dx treatment. I felt worse on letrozole than I do on Ibrance!

[Thatflowerlady in reply to mariootsi]

I was the same mariootsi I take the 125mg of Ibrance . The letrozole was switched to Faslodex . And I feel so much better my body and letrozole were not compatible . I could hardly bend my knees or bend over .

[mariootsi in reply to Thatflowerlady]

I know! It was horrible. So stiff and achy!

[Thatflowerlady in reply to mariootsi]

Strange how our bodies respond so differently to medications

[Felish48 in reply to mariootsi]

Me too...I feel awful on Letrozole

[Hidden]

I took letrozole for over a year when I was first diagnosed over 7 years ago (before Ibrance was available ). It stopped working after a year. Perhaps if Ibrance was around it may have worked longer. I am now on Ibrance and faslodex since January. First scan showed it was working. I would also try to lower dosage to 100. I lasted on 125 for only the first 21 days.

[MacroMom]

When I was first diagnosed in Oct 2017 I had lost a lot of weight and felt too weak to deal with Ibrance side effects, so I only took Letrozole. It dropped my CA 15-3 from 927 to 18 within 3 months and kept that number reasonably low for 14 months. During that time I gained weight and got a lot stronger. So yes, Letrozole alone worked, but since you are having success with Ibrance a better path may be to get your dose reduced. In March I started Faslodex and Ibrance at 125. Like so many of us, the 125mg was too strong (neutrophils dropped from 3.5 to 0.5) so I took two weeks off and am now in week two of it at 100mg. I'll get blood work done again on Monday but I can tell I'm tolerating it better. I agree with the others here....if your onc won't let you decrease the dosage, consider a second opinion. My onc was hesitant at first too but when I showed her this article about Dr. Hope Rugo's research she agreed!

targetedonc.com/news/reduce...

[Southside25]

I've been on Ibrance and letrozole for 13 months. Started at 125mg, had some side effects including extremely low neutrophils, reduced to 100, had scans last Monday and continue to be stable. I'm reducing to 75 because I want to. There seems to be some evidence that it doesn't matter what dose you take; if it works, it works. It's your life and you choice of treatment. I would insist on reducing to at least 100 and see if it helps side effects. There is also some belief that having to take an extra week or more off is not good. It's better to be on the meds more days than off. I've also been on a 5/1 dosing schedule which seems to be working well for me.

[Eliactida1955]

Hello Miffy 49-Glad you’re doing fine. What is the 5/1 dose schedule you are on. I am on Ibrance 125 mg and letrozole 2.5 and tumor markers decreasing but I feel week esp in the legs. I have been on Zometa infusions every 3 months but thinking about skipping it. Diagnosed in aug this year with met to femur but last scan all is stable a lot tumors gone just scar tissue and only left axilla node reactive. I thank God and pray for all of us everyday to have the strength to endure ..❤️

[NPmary]

Go for a second opinion ask other pts in your area for a referral or search the cancer center internet sites in your area. You Deserve a Dr who will listen to you and respect you. It is not at all unreasonable to take a lower dose I take 75mg and have much less side effects and it is just as effective? I am stable. Started taking 125mg 10/2017 it soon got lowered to 100 then to 75 not long afterwards. They always test drugs at the highest dose because they think they will get the best outcome and be able to patent their med then the docs fool around with doses in real patient life sometimes they find out lower is better. We have plenty of anecdotal evidence in this case that lower is just as good. Better for you to be happy on a dose that works than to take a higher dose half hazardous and have it not work and then be asked to take something else with worse side effects.

I've had to leave 2 oncologists already it was hard but in both cases it was needed and better for me. I finally realized I deserved better care.

Best wishes to you, Mary.

[PJBinMI]

I was on Letrozole and got nearly five years from it as first line treatment when I was first diagnosed with denovo mbc with bone mets. I was on Zometa for my bones but not any of the added meds that weren't around yet then. Alot of my friends with mets did well for long periods of time with Letrozole alone and several of us, me included, got a very long time for Faslodex after the Letrozole stopped working. Ibrance , which I was on briefly with Faslodex in 2016 damaged my lungs, seemingly permanently. So I have a bias against it......

[Drsalome in reply to PJBinMI]

Thank you for your post. I am on leteozole 3 yrs. How do you know it stops working?

[PJBinMI in reply to Drsalome]

scans showed increased cancer activity. For me that was very gradual and my onc and I agreed that we'd keep an eye on it and not rush to change treatment. aI wasn't having symptoms and the increase was minor.

[Drsalome in reply to PJBinMI]

Thank you so much for your time to write and it gives me information to discuss with my onc

[Hokie]

Hi Miffy49, I was on ibrance 125mg for about a year with letrozole, then reduced to 100mg, for about 6 months, then down to 75mg all with still taking letrozole2.5mg. My tumor markers dropped to good levels. So I’ve been on letrozole only for over a year now and my markers have stayed in the low 20’s. We monitor it every 6 weeks. Other than joint aches I’m doing well. I suppose the nurse in me just wants you to know, please don’t skip your meds. It will probably affect the efficacy of ibrance fighting the cancer cells efficiently. Please talk with your doc. The side effects are different for each of us, but hang in there. I’m now 4 years in from diagnosis on May 5 with stage 4 from the start, so please give the meds a chance. Best wishes

[Bestbird]

As many others have said, Letrozole can be a very effective treatment. I was wondering what type of side effects you are experiencing? If it's joint pain, there are effective therapies for that, such as acupuncture. You may want to consider switching to a different manufacturer, as sometimes the "fillers" (inactive ingredients) in the pill can cause discomfort. If that fails, Arimidex is a sister drug to Letrozole that you may feel a bit better on. You have many options, and I hope you feel better soon!

[Kathyquilts]

I was on Letrozole alone for 6 years. Then I did Ibrance with Faslodex. The Faslodex replaces Letrozole. Ibrance works differently. But after 18 months I’m now off Ibrance due to side effects.

[Kaylane123]

I am on Letrozole only.