Re-activating efficacy of ibrance aft... - SHARE Metastatic ...

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Re-activating efficacy of ibrance after it stops working!

33 Replies

I'm not sure if this was posted before, but this is important information for all of us on Ibrance.

dana-farber.org/newsroom/ne...

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33 Replies
Buffwright profile image
Buffwright

Thanks! I’ll bring it up with my doctor when I need to take next steps.

in reply to Buffwright

Let us know please if you get more info. I think this sounds more promising than anything I've heard so far. Maybe just wishful thinking on my part....

Godbeforme profile image
Godbeforme

Thanks for posting the article! When I read it, I noticed it said, "tested on mice AS WELL" ... so the assumption is that it has been tested on humans? am I reading it wrong? when I begin taking ibrance again, I will plan my own "holidays" maybe 3 mos. on and 7 weeks off or something like that ... it's my body, I want to be the engineer! am I being daft?

Nmartinez15 profile image
Nmartinez15 in reply to Godbeforme

I thought the same thing! I will do my own holiday so I can let my body rest of toxins. I am waiting for my pet scan in February.

Godbeforme profile image
Godbeforme

ty Sandra <3 xo

Not tested in human trials, but what also stood out for me in this article is:

"The discovery that resistance to a CDK4/6 inhibitor is transmitted to tumor cells via exosomes has a potential benefit for patient management, the scientists said. “We may be able to examine patients’ exosomes [by means of a blood test] and see if they are becoming resistant earlier than would be apparent because the cancer progressed on radiographic scans,” said Shapiro."

Which in my very not knowledgeable opinion means we could start a different CDK4/6 inhibitor before substantial progression. No?

NShaft profile image
NShaft in reply to

Possibly so. My Dr. plans to have me try Verzenio after Ibrance stops working. Apparently there is evidence that it works in a slightly different way even though it is the same inhibitor.

kearnan profile image
kearnan in reply to NShaft

I am now on Verzenio after 3 months on Ibrance. I did not have progression on Ibrance but an infection developed that got so severe I had to have surgery. Quick story.. Four month recovery from something that in the past would go away with an antibiotic. Now on Verzenio. I could NOT handle the 150 mgs. 2x per day, nor the 100 mgs. 2 times per day but am now on the lowest dose of 50 mgs. twice per day. Better than Ibrance for me, in part, because I do not have that extreme bouts of severe fatigue I had on Ibrance. Although it comes with its own side effects, I still prefer this over the Ibrance. My week off of Ibrance was the sickest I ever felt in my life. With Verzenio no weeks off but now and then I give myself a break for a few days.

NShaft profile image
NShaft in reply to kearnan

Thanks so much for the insight into Verzenio. I'm tolerating Ibrance pretty well so not looking forward to having to change.

kearnan profile image
kearnan in reply to NShaft

Opposite from me. I was so excited to get off the Ibrance but then again like I said my week off was horrible. Eventually, all of us will have to change to a different medication eventually.

God I know Sandra!! Whenever there's something promising done in a lab it seems to become a mute and closed subject after the publishing of their first finding, so frustrating!! You think it's all just "busy work" to get funding?

Anja

Julie2233 profile image
Julie2233

Unfortunately the NHS in the uk only allows one shot at ibrance once it's stopped due to progression you aren't allowed to go back to it later.

Kdiet profile image
Kdiet in reply to Julie2233

Frankly, this is why the Democratic Party in the US is having such a tough time. No one here wants to face the delays and regulations of one healthcare system.

hdhonda profile image
hdhonda in reply to Kdiet

There are some Dems like Biden, Bloomberg, Mayor Pete, Amy Klobuchar that don't support Medicare for all. I think Obama Care just needs to be tweaked. Blessings, Hannah

Julie2233 profile image
Julie2233

Yes, I've been worried that I've been swapped too soon but my oncologist was absolutely certain that it was the only course of action. I'm waiting for a scan in December or January

Julie2233 profile image
Julie2233

Yes, I'd had spread to the liver though the scan appeared inconclusive. My bones were stable with no pregression.

Fingers crossed that we both get good news 🙂

Survivornow profile image
Survivornow

I read this a while back and suspected that when we get to the point that the side effects of the treatment became less severe, our disease is no longer resisting and the treatments had stopped working. My treatment dosage has been very scattered with no set dosage occurring longer than a few weeks steadily at a time, with a 90 % reduction in my disease! My side effects have remained fairly severe no matter the drug or dosage. Again, I suspect this occurs because my body is fighting off the disease. I have taken a hiatus from the meds until after my PET Scan in December, the side effects were so strong that I literally didn't want to/ couldn't get out of bed! I can take only a few days of meds at a time before the extreme side effects get too bad (I'm at the lower dosage Ibrance75 mg. and had to stop my inhibitor because of it's effect on my joints - RA makes it worse). My Oncologist is just shaking his head and talking about radiation therapy to kill off the last 10% of disease and then checking me every 6 months. But he's warned me that cancer will definately shiw up somewhere else in my body if I don't take my medication. We shall see!

SoCalLady profile image
SoCalLady in reply to Survivornow

Survivornow, what were your side effects that you could not get out of bed?

Survivornow profile image
Survivornow in reply to SoCalLady

Exhausted to the point that it was an effort to get out of bed at all. And with my RA getting steadily worse, it just made it harder. I've had a good mental additude since day one of my new battle a year ago and have kept that positive feeling all along. I've forced myself to get up, get going all summer as the side effects got worse. I raised 3 litters of tiny rescue kittens, bottle feeding the first litter every 2 hours during the day, as well as taking care of 6 rescue dogs that we adopted and 9 outside rescue cats (we live on acreage in the country and people are constantly dumping animals here) and take care of 4 adopted kittens (sigh). And I sculpt pets for owners, make Fairy Cottages, cook daily, bake weekly, clean a large house, grew my own vegetables until this past summer, swam daily till it got too cold (I walk every day now with light weights). So having the exhaustion hit and grow worse was hard. I also started getting headaches and nausea and my lymphedema grew more painful in my arm and chest.

Tam-56 profile image
Tam-56

So much uncertainty ...what harm would it do to at least get the blood test to examine the exosomes. At least we could establish a baseline and go from there. I have read some women on this site have a different schedule for taking Pablo such as two weeks on two weeks off. What harm can it do and why wait for the powers to be?

in reply to Tam-56

Tam-56, I so agree, and next month I will ask my oncologist about the exosomes testing

hdhonda profile image
hdhonda in reply to Tam-56

It could affect the efficacy of medication. Check with your oncologist before making a change. They will be able to determine what is best for you. We are all different. Blessings Hannah

Nmartinez15 profile image
Nmartinez15

Thanks!

NShaft profile image
NShaft

I'm in a study at Mayo where I'm followed more closely with a few extra tests and blood work about why Ibrance stops working. I'll have to ask if this is what they are looking at.

mariootsi profile image
mariootsi

Thank you! Hope that they test in humans.

Thatflowerlady profile image
Thatflowerlady

I didn’t realize that Sandra ( I am a fellow Canadian ) what is the reasoning behind that ?

Betbop profile image
Betbop

Thank you so much for reposting this very informative article.

I am so grateful to be able to have kindred spirits to discuss this with. It's such a lonely road otherwise.❤️

Great article, thank you for sharing! ❤️🙏❤️🌈

Lordmandy profile image
Lordmandy

Very encouraging news. Thank you for reposting!

love2golfwell profile image
love2golfwell

Thank you for sharing this information. I am on my second cycle of Ibrance and Letrozole and am hoping that these work for a very long time. However, it does make sense that the tumors can become resistant. I hope they continue to do research on this.

Pbsoup profile image
Pbsoup

Glad this post came back up. This is what my doctor is trying on me. I had mild progression. He swapped Anastrozole for Faslodex and we are pausing Ibrance for a month or so. Once we see how the Faslo is doing we will either add Ibrance back or switch to Kisquali. He wasn’t sure on timing.

He said that he has had success doing this for others. I will keep you all up to date on how it goes for me. (Prayers and happy thoughts appreciated).

One thing I did ask if there was a test to figure out why I developed resistance before the two year mean and he said no. There is also no way of determining whether the resistance was to the Ibrance or the AI. That’s so frustrating.

If anyone else has had experience good or bad with restarting a cdk4/6 inhibitor after a progression-inspires holiday from it I would love to hear your experiences.

hopenowandtomorrow profile image
hopenowandtomorrow in reply to Pbsoup

Hi Pbsoup: Dr. Lin on the recent LBBC webinar said she & Dana Farber are having good success with going back to IBrance after doing another line of treatment when the original IBrance treatment stopped working. I thought that was great news.

All the best with your treatment ❤️🙏❤️

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