Ibrance/Palbociclib/Pallas trial... experiences?
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I wonder, too, if we're able to enroll in any other trials for 'new' drugs. I haven't done research to see what might be out there - and I'm sure we would not be able to do any other CDK4/6 inhibitor drug trials. But I know there are others going on. It does feel better to have more 'insurance' with more treatment, but at the same time are we just adding more toxins to our bodies to little or no benefit? Who knows, right. I do think the mental aspect of the extra treatment helps - it definitely helps with my anxiety - which is always there but feels less because of the Ibrance trial.
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Hi - I am in the Pallas trial in the letrozole only arm-- I believe the trial is no longer recruiting enrollees. it has been running since summer of 2015 and I think they hope to start having result info next summer and continue following patients for several years more as HR+ cancers can recur late-many years later... You could check with your onc about other trials you may be eligible for--hugs to you, Kaylie
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Hi, all. Stealing this from Lumpie on her breaking research thread. Anyone considering pulling out of the study? My boss was going through an IDL diagnosis while I was going through my treatment for BC. I can't say I would chose either if given the choice, but severe IDL is almost always fatal without a lung transplant from what I understand. Scary stuff.
FDA: Novel Breast Ca Drugs Linked to Severe Lung Illness Reports of ILD, pneumonitis in patients on CDK4/6 inhibitors
The FDA issued a warning Friday that CDK4/6 inhibitors for advanced breast cancer may cause rare but severe lung inflammation, and said fatalities had been reported. Package warnings have been added to the three approved agents in the class -- palbociclib (Ibrance), ribociclib (Kisqali), and abemaciclib (Verzenio) -- and breast cancer patients taking these agents should be monitored for pulmonary symptoms indicative of either pneumonitis or interstitial lung disease (ILD).
https://www.medpagetoday.com/hematologyoncology/br...
https://www.fda.gov/drugs/drug-safety-and-availabi...0 -
I thought we’re not allowed to do other trials after PALLAS... First of all because the follow up periode is 5years and second because new trials put us in the exclusionbox because we do not fit in the «standard treatment» anymore?
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And... how are your trialfollowups after finishing all the Ibrancecycles?
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Finished 26 cycles.... A bit afraid to stop taking it...
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Congrats, Anna! I'm not far behind you - will finish in April. I get the same feeling... How have you been? It's been a while...
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Congratulations Anna! I just finished my 26 cycles in December. It does feel like dropping my security blanket. I think my body is still recovering. Still have some fatigue, a face rash, etc. My doc said it would take a few months.
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Thank you for answearing. It is har to describe the sideeffects, but I do feel tired...could sleep 15 hours without problem everyday. And I have got some wet wounds in my face. And low white og course...
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Dropping the securityblanket was absolutely the right words!!!
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Hello all - I know some of you are off the Ibrance, but I'm wondering for those who are, how you are handling the COVID-19 stuff? I still have to go in to get my Lupron injection. Made arrangements to work from home and isolate my family...then Sunday, my husband took my 6 year old in to be admitted to the hospital with septicemia from a UTI. All this worry about protecting myself, and here my completely healthy little girl comes up with a potentially life threatening condition inside of 48 hours and amid all this craziness... she's doing well and thankfully will be out of the hospital soon with a PICC line and IV antibiotics for the next week and a half...
Still - worried about continued care; doctors appointments and just general life while all this is going on. Anyone else?
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Hey all, just checking in with my .02. I was on the no drug of the Pallas trial very early on but a recurrence and high onco score put me in the Fasolodex-Ibrance journey anway. Strange how things work. Anyway, it will be about a year on the combo shortly and my MO decided she wanted to see some scans. I put them off as long as possible but all came back good except for some degenerative stuff and arthritis that was known.
So now my MO says she is at a crossroads. Does she continue me on Fasolodex and Ibrance with no evidence that its helping? I am not ready to leave my drugs alone especially since other than a little tiredness and a hot flash here and there, I am no worse for the wear. Ibrance is expensive though and my insurance has questioned it a time or two for my early stage even with recurrence. So MO is awaiting mote info from the trial studies
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Opt4Life,
Thank you for sharing your experience!
How was your blood work and immune system?
Which dosage have you taken? 125, 100 or 75?
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Hello Mika, I take Palbociclib 125 g. My bloodwork has been stable with only one cold during the last 9 months. I did get my flu shot though. I also skipped one cycle...I think in October because I traveled the entire month and needed every bit of energy and focus I could get.
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Opt4Life,
Thank you so much for your response!
Did your MO allow you to take vitamins and supplements while taking Palbociclib?
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Good question, yes I continue to take B-12, B-6, Tumeric and a one-a-day that I've taken since I was 21. I was asked to stop taking vitamins when I was on IV chemo.
I recently switched MOs because my old one was swiped away by Johns Hopkins research. My new one is big on scans where my old one was not. My old MO said scan only if you you have pain somewhere. My current one wants scans once every 12-18 months. My insurance is not on board with that of course and gave her quite a time to get them approved. I don't like scans for obvious reasons but ultimately it did make me feel better that other than some arthritis and degeneration in my spine my scans look about the same as almost 5 years ago when I was originally diagnosed.
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Opt4Life,
Thank you!
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Hi, all. Just took my last dose of Ibrance yesterday. It feels like more of a relief than I thought it would, but I think that has something to do with current events and wanting to recover my WBC count...
Wondering how everyone is doing?
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Lexica, Congratulations!! You made it. I’m about 5 months ahead of you. I’m feeling better (less fatigue and gi distress) and no recurrences so far. I also just had my 6th and final Zometa infusion. Happy Healing and Stay in touch.
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Hello,
I'm not in the trials, but I'm following this topic to know more about Palbociclib. My MO told me that this drug is very well tolerated. My RO told "it's not a piece of cake". I'm on AI+ Lupron regime now.
Did Palbociclib affect your bones? Skin? Hair? Physical activity? Cognitive functions?
Unfortunately, there are no results of this trial available online.
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I finished 2 years in the trial this month- am on the letrozole only arm which am on anyway and have to stay on for years to come--so now move to the surveillance period--I think the trial arms finish in July and then all will be closely monitored for sometime-years probably, to compare recurrence rates between the letrozole only vs. aromatase inhibitor/ibrance arm--my onc tells me no results will be known for quite a while -several more years..
Now if early comparisons show positive results showing up--there could be preliminary results released-just no easy answers at this point--Kaylie
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kaylie57410,
Thank you for the information!
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MikaMika - "Did Palbociclib affect your bones? Skin? Hair? Physical activity? Cognitive functions?"
Yes to all? But it's hard to tell whether all of this is from the Ibrance or the hormone therapy. I started it all at the same time. I'm hoping I can have more of an answer in 4-6 weeks when everything comes to baseline.
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Lexica,
I wish you a quick recovery!
One more question, please. First year on Ibrance was easier than your chemo regime?
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Thank you, Mika.
I'm not sure...chemo wasn't too bad for me. I'll say it's an adjustment either way. But certainly tolerable.
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Ugh. I so did not need to see this today. No statistically significant improvement in the primary endpoint.
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Lexica,
I saw this article a few days ago and didn't want to share it. On the other hand they also mentioned that there is benefit for high risk patients! How are you doing?
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Hi, Mika - I am okay, thanks for asking. I took a half day at work just to hang out with my family, because I was not okay after reading this. They helped
How are you?
Do you mind sharing the source for the benefit for high risk patients? I didn't see that... Always looking for a silver lining
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Sorry, I can't find that article where PENELOPE-B trial and its possible positive result was mentioned. I used to clean my browser cache/cookies every day. I'll try to find it again!
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I am so sad about the Pallas primary results😭. For this years it feels like Ibrance was my only hope. Thats what I have been told. Now what?! I could not find any numbers and so on about the results... Anyone
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Wasn’t that about Ibrance before surgery?!!!? Not like the Pallas trial
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