Ibrance (Palbociclib)
Comments
-
I'll post a bit more later -- but wanted to post this research story now. This is a study showing that BC is fibrotic and one key to making immunotherapy work for MBC may be to block a particular pathway. A drug already is in use for this in other cancers. Step by step yes?
0 -
Yes, Penny, step by step and from all angles! Thanks for the link. One of these days they will find the breakthrough.
0 -
Thank you, Jaycee (Janet)!!
0 -
Praying4U, I vote for that "big, fat nothing burger" too! And if I were a betting woman that's where my money would definitely be ... though I guess we never know for sure with this beast do we? That's why we worry!
Candy, SO glad to hear you are feeling the *good* in the midst of all of this.
Joyner, wow, odd, scary, but I'm glad you found that there is a bright side.
GG, 41, wow -- isn't it unfair that we worry when we do well for so long? It ain't right!
Grannax, last but far from least my dear, I'll be thinking of you and praying for you tonight.
P.S. to Lauren: There are many kind souls of the site -- including you. :-)
0 -
JoynerL- is it possible to do a Foundation 1 or Caris or even repeat the ER/PR/Her2 on this skin lesion?
0 -
Help reading Path report from second biopsy
I snipped a section, which concerns my right breast. Tumor never removed. Does the following mean that there are now 2 tumors in the one breast?
***FINAL PATHOLOGIC DIAGNOSIS***
A. Breast, right, 10:00, 7 cm from nipple, needle biopsy:
- Invasive ductal carcinoma, Nottingham grade 2 of 3, see comment
- Ductal carcinoma in situ, cribriform type, intermediate nuclear grade
Thanks for your help, can't wait for Mom when I meet my new OncOh, I looked up crbriform and that mean that it's now a solid tumor?0 -
Snooky - The needle biopsy picked up two different types of growth, IDC and DCIS (cribriform type which only means there are spaces between the cells).
Needle biopsies are easier than other biopsy types but can be limited in the information they gather because they collect such a small tissue sample.
Gumdoctor
0 -
Thanks Gumdoctor but the cribform is a new tumor. Also, it wasn't needle biopsy, it was core biopsy. sigh
Do you happen to know what "nuclear grade" means?
0 -
The report said needle biopsy. Were they mistaken?
Nuclear grade means how aggressive.
Gumdoctor
0 -
My big right tumor was all one tumor but had both IDC and DCIS in it.
Gumdoctor
0 -
Must of been because this biopsy was definitely core. HOWEVER, I may have made the mistake and sent wrong info, was reading the new sonogram and the biopsy both. And it was stressful. My brain is mush right now, Gumdoctor. The reports were just sent to my portal.. I'm going to put it out of my mind tonight and reread in the A.M> If I made a mistake I will correct. Thank you so much.
0 -
Wishing all a good end to January as we move into February -
GG22 - I am just finishing my cycle number 46 of Ibrance and Letrozole and each month as I get my blood work I get concerned about the results of my markers. I don't know if ones diet makes a difference or not - but I have followed a very strict diet over the past four years, mostly vegan - I also gave up drinking any beverages with caffeine and all alcoholic beverages.
Looking forward to Spring!
0 -
Joyner, I'm thankful that you've made lemonade from the lemon on your face! I'm bummed to know that you have faced yet another scare but I'm thankful the X is already working. Please be sure that I'm here praying.
Love from PatGMc
0 -
Penny, thanks for that interesting story! The report says that including a CXCR4 inhibitor could help make all subtypes of MBC respond better to immunotherapy. I don't know if there are any trials testing that, but the finding reminded me that I saw a trial listed awhile ago that combines a CXCR4 inhibitor with Halaven for MBC, and its having good results (ie makes the Halaven work better), and one of the rationales was the same, ie, making it so that our immune system can better get at the cancer to kill it. So if anybody does not want to try checkpoint inhibitor, its possible to try the CXCR4 inhibitor with Halaven to just rev up the normal immune system, and also interesting that it sounds like the CXCR4 drugs do not come with major SEs:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC61733...
0 -
Interesting trial using high-dose radiation for metastatic cancer (includes MBC):
https://www.astro.org/News-and-Publications/News-a...
PatGMc
0 -
Snooky, the path report after my mastectomy indicated some IDC, dCIS, and some ILC, My docs told me it’s likely all part of the same process and very typical to have biopsy results like tjis
0 -
Wow South Jersey---Congratulations!! That's fabulous. When I was first diagnosed, I also immediately became a vegan. Coffee? One cup in the am. But before that it was all day long. Any how, I continued that diet for a yr and a half, but have slowly added to it. I have a hard time finding, and affording organic vegetables. And the cancer was growing. I still don't eat meat besides a little chicken couple times a week. Haven't had sweets in like forever. You've given me the incentive to go back on my vegan diet. Emotionlly, on that diet I felt like a million bucks.
0 -
Gumdoctor, With a cleaner head, I reviewed the biopsy reports. You are correct, it does say digital. But that is not what I had. The radiologist inserted the core needle and said "ready 1 2 3 " and I heard the click. Four samples they took out for additional testing.
Thank you for pointing this out to me. I missed it. I will definitely point this out to my Onc this coming Mon.
HUGS
0 -
Thank you all for letting me vent and post that LONG post yesterday. You guys are my rock.
Bump---
Cure-ious and others---What is the protocol for the F1 testing?? Does a person just get it done once and that will show all the info needed for the present AND the future??
Grannax and others--- Y 90 used for liver mets only or with mets elsewhere??
My prayers are with each of you today.
0 -
Pat, thanks for posting that report about radiation! it makes a lot of sense as a complement for the stronger therapies we have today. They argue to do radiation if you are oligometastatic (no more than 5 discrete areas of mets in the scans), or maybe to get rid of the primary tumor. Because blasting up the cancer cells in this way not only gets rid of any lingering cancer stem cells, but also exposes the blown up cancer bell bits to our immune system, which can then figure out what cancer antigens to go hunt for, so that kind of boost to the immune system may make every other treatment that comes afterwards work better, because the killing is accompanied by a souped-up immune system. And then some trials are going to mix radiation with immunotherapy. Step by step. First we figure out how to get MBC to respond to immuno (some drug combo), then combine that with radiation to some area of mets, look for durable long-lasting results with very tolerable quality of life.
0 -
Hello to all....it's been while I must say. I am starting radiation for pain management on Monday. I will have 5 treatments to my left hip and I truly hope it helps. I was supposed to have treatment to my lower back as well but the radiation oncologist doesn't want to burn that bridge just yet. She's afraid if we treat it now and things get worse in the future that we won't be able to do anything. Has anyone had to take pain medicine for an extended period of time to help with pain??
0 -
Aw Crazeejane, I had a fairly long pause on the board myself until this week and just been scanning to see if you had posted recently. I'm SO sorry you are still struggling with this much pain,. I really hope the radiation kicks it way back.
sending big hugs!
0 -
Cure-ious, I'm curious if you've seen any more about Alisertib trials, especially in combo with Affinator. I recall that you were also very excited in June when the research news broke about the possible effectiveness of that combo as well as more limited SEs. I periodically search online but don't find much -- the best info that comes up is probably your post on another thread last September. :-)
0 -
Cure-ious, I'm curious if you've seen any more about Alisertib trials, especially in combo with Affinator. I recall that you were also very excited in June when the research news broke about the possible effectiveness of that combo as well as more limited SEs. I periodically search online but don't find much -- the best info that comes up is probably your post on another thread last September. :-)
0 -
Penny, you mean something like this!?
https://clinicaltrials.gov/ct2/show/NCT02077933
That sure sounds like a tough combo 😐
0 -
Penny- saw your post about alisertib. Just wanted to share I’ve been on the Mayo Clinic trial for almost six months. I was randomized to Alisertib only (not with fulvestrant). I was DX mets a year ago (bones and liver). I/F and then Halaven did nothing- had progression. Alisertib got things to stable in 2 months- which I feel was a miracle. A very tolerable drug for me with few SE.
0 -
Penny & Ann,
SusaninSF is also on the Alisertib trial (there is a thread on clinical trials) and last I heard she is also doing well; she has it with Faslodex. Dee had terrible rashes with the drug, which is like the number two side effect, after low blood sugar. Ann, there was some report out that said a lot of people who couldn't tolerate the drug drop out neart the start, so if you are stable out at six months, you may go a long time- Susan said at UCSF at least one person was on Alisertib for four years and still going! It's so impressive that it is working as monotherapy, is that right?
Penny- I was just reading that it can take 6-10 months for a drug to get FDA approval, and so although its expected, if they approve it, to come this year, it could mean not till summer or so. But yeah, I'm happy to see it- basically it is for cancers with PI3K mutation, which often arise as a way the cancer progresses from firstline AI treatments like I/F. It's in the same pathway as Affinitor, and both have different but bothersome side effects, but it sounds like maybe the Alpelisib isn't as bad as Affinitor?
Ann- can you comment some more on the drug- how much do you get, do you have to eat a low sugar diet or fast before and after taking the medicine? Does it come with fatigue and hair-thinning issues as well (maybe not since you are not getting Faslodex). And have you heard of others doing well on this medicine? Lastly, how did they determine you had the PI3K mutation, was it from sequencing of a biopsy or from a circulating tumor cell (blood) analysis? Thanks for all the info!!
0 -
I have to jump in to correct, the drug that I was on is Alpelisib & the trial name is Bylieve. I thought I was reading about another drug, but I clicked on the link & that is similar to trial that I'm on, without the Alpelisib, just Faslodex but you can take it with letrozole.
Cure-ious was right, I had a hard time on it. I took the highest dosage for about 10 days with terrible nausea but no rash, and my blood sugar was perfect, but know that they have very strict guidelines on what anti-nausea meds (or any meds) can be taken and zofran is NOT one you can take. The one they gave me was useless. They took me off the drug for 2 weeks to recover, then restarted me on the lowest dose. At that point I had horrible vomiting, diarrhea & the skin rash within 20 minutes of taking it. I should have gone to emergency, but you know, 20/20 hindsight.
But even after this, I still think it could be a good drug for some, I think it almost doubles progression free time, it's just not for me.
I hope others have better luck with it than I did, but my body is very sensitive to new drugs & it hated this one! good luck to all. thanks Cure-ious for all your research.
cheers, dee
0 -
To all a happy Ground hog Day - an early spring is coming per the little furry animal -
Has anyone been told by their Doctor about the "PACE" clinical trial (Palbociclib after CDK and Endocrine therapy) - which includes staying on Ibrance but mixing it up with Fulvestrant and Avelumab - or is anyone currently participating in this trial?
Currently stable on the Ibrance and Letrozole, however the Doctor mentioned that for me the next line of treatment would be this PACE trial. Just curious on how bad the side affects are for Avelumab -
Thanks, to all take care -
0 -
I have to admit I was skeptical about starting this trial but my MO at the time mentioned they were having good results and that the drug “has so much potential”. Then again nothing had worked at all so ... here I am almost six months later with stable scans- which with my hormone and chemo resistant lobular cancer - makes me extremely thankful. I take 50 mg twice a day just with water- that’s all, 3 days a week for three weeks - off one week. No problems at all with blood sugar levels. I don’t follow a specific diet. We aren’t supposed to drink alcohol. SE include hair loss- not just thinning, fatigue usually the first day of the cycle, neuropathy in fingers and toes, low white blood cells (can have neulasta), initially some nausea and that’s about it. Mayo does TEMPUS genetic testing which IDd the PIk3 from liver biopsy. My MO mentioned at the start of the six patients he had on the trial, five had either stable scans or regression. I don’t know anyone else on the trial and haven’t heard how it’s going lately unfortunately. Hope this is helpful
0
