ibrance

[Praising]

has anyone done a 2 week on 2 week off due to neutropenic? Wondering what’s after Ibrance w some progression. Had guardent test. Results tomorrow.

[Nocillo]

I didn’t have that dosing schedule, but after Ibrance I went on Verzenio and Letrozole. Still on them. I was disappointed that I only was on Ibrance for a little less than 2 years. Hopefully you’ll get longer on it.

[Merma in reply to Nocillo]

How is the Verzenio? Is the diarrhea manageable?

[Nocillo in reply to Merma]

It’s ok. Tougher than Ibrance, but still manageable. The diarrhea was only very spotty at the beginning. Now I try and watch what I eat and that helps immensely. Ice cream is a no go for sure. However, brownies and milk work fine and some of my best days are after I have that combo. Tacos are fine. I try not to eat anything unknown in a restaurant, but I don’t eat out as much as I used to. Fried food is not friendly either. Once you learn what foods to avoid, at least for me, the diarrhea becomes much less of an issue for sure. Good luck to you!

[Merma in reply to Nocillo]

Thanks for the encouraging response.

My issue is that I’m a swimmer and synchro swimmer, so diarrhea is really not an option.

[Nocillo in reply to Merma]

Just get to know your trigger foods then. My stomach/intestines usually give me a pretty good cramp beforehand so I can at least get to the bathroom in time!

[Merma]

I am starting 5 days on and 2 days off after being neutropenic resulting in 3 weeks on and 2 weeks off. I’ve been on Ibrance for over 6.5 years. Now on the lowest dose.

Dr won’t take me off anastrozole despite 2 recurrences. So I got the onc nutrition Dr to put me on metformin to hold back the er. So far it’s working. He thinks I’ll be able to be on this regimen for many years.

Please keep us posted on how you are doing on your new schedule. I am very interested in comparing notes in six months.

Best wishes to you.

[Praising in reply to Merma]

So you are still on Ibrance at reduced time length

[Merma in reply to Praising]

My neutrophils at the end of the week off, were 0.81, so I'm off for another week. Not going to retest. When I restart next week, I'll go onto the 5 day on/2 day off schedule. I'll let you know how it goes at my next cbc testing in August.

[Praising in reply to Merma]

Thanks. I go today

[Sueforshare in reply to Merma]

Curious, how much metformin do you take and is it extended release?

[Merma in reply to Sueforshare]

Yes, it’s extended release. I take 1000 mg. The studies have been inconclusive about its effects on er+ cancers, but it is supposed to target the pik3ca pathway too. So far the side effects are minimal, so it’s worth a try for me.

Nowadays, if you believe the news, metformin is supposed to do everything but make your bed and wash your dishes. 🤣

[Sueforshare in reply to Merma]

Yes, you are so right!😅

[Totheriver]

I have done 2 weeks on and two weeks off. This was the only way I could handle it. I have done this for 4 years and just had scans done on Monday and everything is still stable. Hope you are doing well on it too. Theresa

[catfreddie in reply to Totheriver]

I was on Ibrance for 2 weeks then taken off because of wbc and neutrofins too low. After 2 weeks blood work showed that I had not iproved enough to go back on. So I have been off 4 weeks now and think I am starting a lower dose today. I am also on Anastrazole. Fingers crossed.

[Praising in reply to Totheriver]

I am so glad you responded. I knew someone had. I’m on the lowest dose and still at 1.00 or below the week to start. But I had progression the last 6 mo. So I see today what is next.

[Totheriver]

I am on the lowest dose too. I had progression in my spine in January and I had 5 radiation treatments.

[Totheriver in reply to Totheriver]

Hope all goes well for you💕

[Praising in reply to Totheriver]

Thanks. Did your treatment change. Why did they do radiation? Pain?

[Totheriver in reply to Praising]

The radiation was done to stop progression so I could stay on the same meds.

[Merma in reply to Totheriver]

That's what happened with me too.

[Bravespirit]

I was only able to stay on Ibrance and Faslodex (my first LI encounter treatment!) for 4 cycles- two of which resulted in neutropenia - because of progression in my bone mets. I am so disappointed since it seems to work well for so many.

It turns out I have the ESR1 mutation. I am just completing my first week of Ordedu with no issues. I hope the second line of treatment works for me.

Keep us posted on your Guardians results - I am hoping that will give you the answers you’re looking for.

[Praising in reply to Bravespirit]

Hi. Well I have no mutations. So I think stunned because there were options. I’m going back on Ibrance/fluveserant for 3 mo then Vince scan. She mentioned exemestane and something else don’t remember but not a cdk4. Im neutropenic everymonth. Thank. Praying for peace as we face the unknown.

[Merma in reply to Praising]

interesting. I had two recurrences because Ibrance at 100 mg was toxic, so I was off more than I was on. The first recurrence was so early that the only data the could get was that it was er+. The second, they could do the ngs, but there were no new molecular targets. I thought my dr was going to change the anastrosole to fulvestrant, but no. I’m on Anastrozole and 75 mg Ibrance. So far the last two scans are holding. But requested that we add Metformin since I don’t trust anastrozole when I have to take an extra week off. I had to get the oncology nutrition Dr to order that for me, but my reg onc was ok with it. Mind you I begged for it last year when the 100 mg was wreaking havoc.

I’ve had 3 months in a row where I had to take an extra week off. So, I proposed the new 5 days on and 2 days off and the Dr finally agreed with me. He thinks I’ll be able to stay on this regimen for years. The side effects are minimal to my quality of life. Swimming on 2 masters swim teams and one masters synchro team. So, until the next recurrence, no change. Sigh.

The complication with me is that many of the drugs used in mbc, aren’t approved for endometrial cancer, let alone metastatic ec,, so Medicare and insurance won’t pay for them. Ibrance is in that category, but for some reason I’ve never had a problem. If you can imagine, at least 40% of of EC and metastatic ec patients are in this category, but don’t even know it? It’s simply not even option for them. In the newer clinical trials, EC patients are getting veranzio., though. Hard to wrap my head around all of that.

[Bravespirit in reply to Praising]

Praising -

Well, knowledge is power, so now, knowing the results of your test, you and your ONC can choose the next best path. It appears there are so many options with not only the dosage but the dosing schedule. I am encouraged that one of the options these MBC warriors have shared will work for you. 🙏

[Mermaiden]

I have gratefully been on Ibrance and letrozole successfully for 6 1/2 years with no current evidence of disease. 🙏🏻 I started with Ibrance 125 mg, but due to symptoms and neutropenia, I was reduced to 100mg and further to 75 mg for 18 days on followed by 10 days off. This schedule seems to work well for me in all regards. Praising, I hope you get good news on your test. And I wish all my fellow warriors out there all the best as we trudge this road together 🙏🏻

[Tantalon7211 in reply to Mermaiden]

That’s wonderful to have 6 1/2 years of stability! Did you have extensive bone Mets to start with? I have in my iliac bone, and few on spine- some progression- been in Ibrance and anastrozole for only two cycles so far- 21 days on and 7 off- lowest dose of Ibrance

Your schedule of 18 days on and 10 off sounds so much better - will talk to my onc next week / gives time for neutrophils to come back up

Do you have many side effects ?

[Mermaiden in reply to Tantalon7211]

hi Tantalon, I had one large tumor in my sternum, which they radiated, and I seem to have a spot on my iliac bone as well, that they’re watching, but I’ve not had any progression since I started Ibrance. My symptoms on this dosing schedule are almost nil. On a rare occasion I get a neutropenic blood test and occasional fatigue and mouth sores, but very minor compared to when I was on a higher dose and a full 21 day cycle. I wish you a long run on Ibrance as well. And I hope they find the right schedule and dosage for you!

[Praising in reply to Mermaiden]

I likw the reduced schedule you get and that there has been no progression for 6 yrs. Gods blessings.

[hurricaneheather]

mbc dx with pleural effusion July 2015. treatment started Aug 2015: Ibrance, Anastrozole, Lupron. stable/NEAD in (March) 2016; still stable/NEAD. ctDNA results have been “0.00.” took Ibrance 14 days on/ 14 days off for years, by choice, not for neutropenia.