After going to the genomics clinic and talking about the clinical trial that is supposed to start this summer, I met with my oncologist. She said she wants to wait until after my next scan in a couple of months to see if maybe the cancer has stabilized since my last scan. After being on ibrance and faslodex for 8 months I had some progression in November and very little if any progression on my scan the end of January. She said I may not have to do the clinical trial this summer and might still be able to stay on ibrance for a little while longer. I'm just a little nervous that the trial May close and then my cancer May progress anyway and I've lost out on that opportunity. Has anyone else had any experience with cancer stabilizing after some progression or your oncologist recommended you stay on the ibrance because progression has been minimal? What were your results?
Cancer May stabilize on ibrance after... - SHARE Metastatic ...
Cancer May stabilize on ibrance after some progression?
Hi there
I was on Ibrance for about 13 months when I had progression in my liver...I had SABR radiotherapy to that area in order to stay on the Ibrance...although the radiotherapy worked another liver lesion appeared so I’m now taking everolimus (Afinitor) and exemastane...in hindsight I wish I’d been moved from Ibrance as soon as progression was seen as I had awful effects from the radiotherapy and obviously the Ibrance had stopped working
I’m in the UK and was offered to partake in a trial instead of the drugs I’m taking now...however I declined and thank goodness I did as trials have been stopped by the NHS due to Covid-19 so I would have been totally pissed off
My experience therefore showed that once the Ibrance stops working...that’s it...move on to another drug
Hope helps
Barb xx
Hi Barb thanks for the update. I'm just curious when you say the trials were stopped, did they actually cancel the trial right in the middle of everyone's treatment or did they just stop future trials that had not yet begun when the coronavirus hit? I may still be going on afinitor down the line, it seems like it is often wait and see in the world of metastatic cancer.
I have had a bit of growth in a couple Mets to my spine and a new Net on my skull. My oncologist thinks I should stick with the Ibrance until I have my bone scan. If it moved to an organ he would switch me right away but he feels the bone Mets may have been there before and just surfaced ? I don’t quite understand but he said my only other option is chemo so I’m holding on to the Ibrance for now.
Okay thank you Sarcie. yes it is rather complex, hard to know when the progression begins sometimes and the properties of the drug affect us all in different ways. I always tell people having breast cancer is very interesting with all of its twists and turns though I would never wish it on anyone.
Hi Wolverine19-
I had what sounds like a similar experience, early on in my treatment (5 years ago).
I went on Letrozole in January or February of that year and then added Ibrance in April (it had just been approved). I had progression show up in scans in November...so I'm not sure if we'd count that as about 10 months (Letrozole) or 7 months (combo). My doc speculated that perhaps those little tumors had been there earlier and had simply blossomed a bit, so we stayed the course, monitoring closely.
I went on to enjoy three additional years from that treatment with things gradually improving, e.g. 'no medically significant disease" about two years in, then a gradual heating up of tumors until I switched to Faslo + Ibrance.
I actually tell this story all the time as an example of not rushing to change treatments due to what looks like progression...I think docs have learned this, but back in the day it seemed that many women / docs were ditching ibrance with progression just a couple/few months in! Unlike hardcore/IV chemo, it takes a while for these drugs to work...
By the way, during that time I was queued up for a trial at Sloan for something to address the PI3K mutation....I never started the trial because my docs said that I shouldn't stop a treatment that's working, but of course everyone is different, has different circumstances.
In my case, I'm so glad i didn't do the trial. The drug they were testing at Sloan was one of three that were being tried at different facilities...Piqray came out these trials (was not the Sloan drug), was approved, and will be available to me when the time comes. If I had done the trial, on a drug that ended up not working particularly well, I'm pretty sure that i would not be able to take Piqray in the future...
Take care,
Lynn
If it were me l would wait to see (if the progression was in bone only l would have absolutely no doubt about it). Ibrance is a great drug when its working, probably the best they have to offer in performance and fewest side effects. Its a first line treatment if it fails l would Not go into a trial because there are sevond line treatments that are known to work. Good luck. ♥️your cancer is stabilizing