Ibrance (Palbociclib)
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hollyli1202– I too had metastasis to my supraclavicular node. I have ben on I/L for 48 cycles and doing great - I am on 75 mg. I also had the node removed and radiated. Hope you experience the same success or better
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Holli - just a quick note that I have voice issues with ibrance. “Voice loss" is a stated side effect so I wouldn't worry about that being your cancer The good news for me is that so far it is not permanent and always returns to normal (but then i'll lose it again later).
Love to all,
Lauren
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time-for-a-cure- I don't get it, my MO says they can't remove the node in my sup-clav. Should I be pressing the issue and asking for radiation? I am very happy you're on cycle 48. I hope I get that far.
Lauren - you have just set my mind at ease. Bless you!!
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Hello everyone, has anyone heard of the use of Olaparib (Lynparza/PARP inhibitor) after Ibrance even if you're BRCA -ve? I've started Xeloda, but I heard that that its showing response in Ovarian cancers that are not BRCA -ve and that there are instances of using it in Breast Cancer also in that setting. I searched the site to see if anyone mentioned this. I did see a post from Z that mentioned it, but she said she couldnt remember her source either.
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Holly;
I too had a tumour in my supraclavicular node....back in 2004. I was told it was inoperable. As was standard then I had chemo (A/C Taxol) and radiation. They really blasted that area with radiation and I still have radiation burns which I consider a small price to pay. I went a long time until I recurred in 2018 with lung mets and with todays treatments who knows I might not have had a recurrence if I'd been able to stay on an IA....I only had 7 years. Oh yes, I also had Hercepton first time around. I am on my 13th Ibrance/Letrozole and am doing very well. Apparently I am BRCA1 positive and have had ovarian cancer in 2015 with no recurrence (yahoo).
God bless you all,
Cathy
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Holli, I would press with your MO to ask to radiate that node especially if thats the only Mets or one of few Mets. I know some Oncs would consider you oligometastatic and treat you with a curative intent. I was in a similar position with a mediastinal lymph node and did not ask for it and have had an Onc who specializes in oligometastatis ask me why we didnt radiate the node and now I wonder if I should have.
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Ann273-
Some cancers have BRCA-ness (BRCA-mutant-like) features without having the BRCA gene mutation (because they have a mutation in some other gene that acts in the same pathway). Myriad has a test for this, and now apparently there are some immunohistochemistry assays that can be done to test for that.
For example, CDK12 is essential for BRCA1 expression, and if the cancer has a CDK12 mutation then the BRCA1 protein is not expressed and the cancer will respond to PARP1 therapy. However CDK12 mutations are rare in breast cancers, like 3%.
But there is another way for most of us without BRCA mutations, or BRCA-ness cancers. Taking a CDK12 inhibitor (drug) also extinguishes expression of BRCA, and makes breast (and prostate and ovarian) cancers sensitive to PARP inhibitors. There is at least one CDK12 inhibitor making its way to clinical trials, but obviously it will be awhile before they are tested in combination with PARP inhibitors.
But even without PARP inhibitor, a CDK12 inhibitors will prevent the cancer from repairing its DNA, so these cells are more easily killed off by chemo or radiation. And, even better, it screws up the cancer cell so that it makes a whole bunch of neoantigens, which attracts the T cells to come in and makes the cancer sensitive to immunotherapy! In the lab the drugs work great, will have to see if it can be tolerated in terms of side effects. So, I'd be more excited to see them tested with immunotherapy than with a PARP inhibitor, but anything making either of those treatments work better, or work for more of us, would be progress.
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Hello everyone,
Hopefully you all will have some answers for me!
1) I'm on my first round of I/L and day 18. I feel pretty good but did get my blood results from a week ago that I'm not sure about. The out of range figures are:
monocyte: 3.6 (ref range 4.7-12.5)
eosinophil 0.5 (ref range 0.7-7.0)
Then there's a second set of figures using the same names: monocyte: 0.13 (ref range 0.24-0.86) and eosinophil 0.02 (0.04-0.54). Why are there two sets of numbers? The narrative says "Atypical Lympho?"
Also out of range are potassium: 5.9 and glucose: 118
2) I also have nodes lighting up in mid-hilar chest. My radiologist also said not suitable for radiation and i wonder why. I had one met in my T6 that was radiated and several in axillary area that are going to be removed hopefully after they shrink. I am also wondering why hilar nodes can't be radiated! I'd love to be oligometastatic!
Thanks and best of luck to all,
kitkit
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Cure-ious thanks as always for that explanation! I think my onc may have just mentioned it to make me feel better. But he definitely has multiple patients with Ovarian cancer that arent BRCA -ve that are doing well. Like you mentioned they may have the other features you mentioned. I havent seen many on here using PARP inhibitors let alone those who arent BRCA +ve. I really hope we will soon find a drug that is a decent second line therapy after Ibrance (and other CDK4/6).
kitkit, I do have a hilar node thats positive and after some coaxing from the new Onc who specializes in oligometastatic, my onc agreed to try radiation therapy to the node. The way he seems to be dealing with it is by having more sessions and using lower doses each time.
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Hi all,
I just got out of the meeting with my mo and one of the nurses working on the trial. They think I will be acceptable to Pfizer, the sponsor.
Basically, it's a phase 1/2a of dose escalation and efficacy of PF-06873600 on breast cancer.
The goal? They want to prescribe ibrance as a mono therapy, in a similar fashion as Abemaciclib. You have to be HER2 negative to partecipate.
The good news is: no out of control blood sugar levels are expected (like I feared). Also, no loss of heart, liver, kidneys, and digestive functions. Just the usual suspects: fatigue, diarrhea, no appetite and weight loss, no immune system, aches and pains, and possibly hair loss—just business as usual....
I signed without reading the consent because if I did, I probably would have chickened out like I have numerous times before...Basically the specter of Doxil made me do it!
I will start Tuesday, earlier than expected, since a month has passed from my last intake of capecitabine.
I will have to make myself available for long days once a week for the first two weeks, and then once a month....two months later they will check to see if there's a response.
That's it for now....May you all enjoy a peaceful and joyous weekend in the company of loved one's
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Miaomix, can't wait to hear how you do. This could be a great thing.
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from you mouth to God's ears Intothelight....
my only issue is the dose escalation part, they tend to always prescribe WAYYYYYY too much medication for my physical and mental health...but I will be a good girl....and do my best
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Miaomix, did they say what exact doses they will use? Starting where and going up to where? Why would more Ibrance counteract the lack of a hormonal? I'm in the dark here, not uncommon.
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Ann;
When I was diagnosed with the tumour in my supraclavicular node the stage was 3C. My primary tumour in my breast was removed with a lumpectomy. I understand that until very shortly before that it would have been considered stage 4 but they found that some women survived. I was thusly treated with curative intent. In fact some onc's at that time thought I had been "cured" (no matter what stage that word makes me very uncomfortable) and I was told my treatment was ended 7 or 8 years after diagnosis. they felt my cancer was very aggressive and if it was going to recur it would have done so. I was also taken off arimidex which I thought was a big mistake but only 5 years was standard.
Cathy
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Oh Miaomix, Can't tell you how very happy that I am for you. I am praying for the very best results. You could well be part of the next tx for cancer. Very exciting. God Bless
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Jaycee....they talked about taking two pills twice @ day on an empty stomach, which is kind of scary to me. They will start everyone with one dose, and correct accordingly. I explained that previous radiation eradicated my ability to produce hydrochloric acid, and I must use pancreatic enzyme to properly digest foods. They were not happy to hear that because, pancreatic enzymes, in the right amounts, can be used as a cancer therapy. But I only take 3 or 4 before a meal, not 200 @ day....
No breaks in the pill taking, as it's currently prescribed. They have changed the formula and are testing for efficacy as well, and the reason can only be profits, unfortunately that's what motivates pharmaceuticals to test something new. If we benefit, that's great, but what they seek is just FDA approval. The most important and real information about the efficacy of new drugs can be found by reading the financial papers.
I honestly don't know, how long I can last taking a powerful medication on an empty stomach. That would explain the nausea, loss of weight and appetite...right now losing some weight would be fine, but cachexia is a very dangerous condition and so many cancer patients die because of it. That turned out to be the case with LaLady,....I couldn't persuade her when she came to Manhattan to resolve first and foremost the cachexia. She was an amazing woman! RIP beautiful and sweet laLady!
Capecitabine has spoiled me, now I don't expect to feel worse when I'm in treatment
I just hope they know what they're doing, and they don't create more health problems than solutions.So far, all my suffering has been caused by the treatments, so I'm quite skeptic.
MSK does not currently have a successful immunotherapy tx for my type of MBC, but my MO knows that's what I really want. I consider any tx that weakens our immune system, makes us susceptible to infections and heart diseases, that makes us more vulnerable and less healthy, medieval period!
Since, by no fault of my own, I'm no longer dissociated from reality... I plan on surviving this terrible disease., and may we all succeed together!
I learn so much from this community...You're keeping me sane and well informed....so thank you all and God Bless everyone, including our doctors, nurses, and yes, the pharmaceutical companies as well. May they finally see the light at the end of the tunnel
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Hello ann 273 -
On your positive hilar node, do you have more than one that lights up? How many sessions of radiation are you having to it? Have you finished?
Thanks,
Kitkit
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hollyli1202, I was diagnosed in January with a supraclavicular node and a cervical node in my neck. I was totally freaked out that they weren't going to be removed or radiated, but after only 3 months on I/L they are gone!
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Seaway - 2012 I was dx with stage3c with a sup-clav node lighting up. I also had a large tumor in my breast (same side as sup-clav node). I had the node radiated as they said it was not operable. Now 7 years later I have a small tumor in my sup-clav. So I wonder what would have happened if the node was surgically removed. The intent was to cure in 2012. The intent was to stay on AI for ten years to life. Then it failed me.
Ann - Would I qualify for oligliomet? I have the soft tissue tumor in my sup-clav on left side. One sup-clav on right side, two mammary nodes (bilateral) and one more in the mediastinum. I thought about cryoablation for the soft tumor one. Idk, too much research. What would you do?
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kitkit, I only have one hilar node. I have finished 5 rounds of radiotherapy to it and have 5 left. The way the rad-onc explained this to me is that they give low doses each time and therefore have more sessions.
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MIao- totally excited!! they will do dose tests as monotherapy for phase 1a, then try in combo with AI in phase 1b (unless the cancer is already endocrine-resistant, in which case the monotherapy is used)- and this also might make immune system work better, but they aren't testing now. Am curious to see what the kinase selectivity of this drug is:
https://clinicaltrials.ucsf.edu/trial/NCT03519178
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Holly, while I'm not an expert, my Onv said 5 small mets or less. The definition seems to vary also. I would straight out ask your onc about if you may be oligometastatic. You could also go on treatment and see how you respond. My first time, the drugs completely took care of the lymph nodes!
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cure-ious thank you for the reassurance and your confidence in this tx. I started reading the paperwork, but had to stop in order to remain positive.
May something truly great come out of this trial for all of us, and future generations
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Miaomix, every person who participates in a trial is a hero to me. I will be praying that your side effects are minimal and that this treatment works wonderfully for you. Thank you for your great courage!
Love from PatGMc
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regarding supraclavicular mets - Mine was operable and Ihad it removed. But I should point out that when it was removed, there was no cancer cells left. The I/L had taken care of that.. I then had radiation to my neck. Since it was my only met, i would be considered oligometastatic. As I said ihave been on I/l for 4 years, i often wonder how long I should stay on it. Might 5 years be enough?
Kitt
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Time- maybe, maybe not... can they at least test for circulating tumor cells, ctNDNA?
OOH, MIAO!! I'm excited even more for your trial, Madam!! I finally got around to checking, and that inhibitor you are taking blocks CDK2 in addition to CDK4,6!! This is excellent because CDK2 is the route the cancer most often takes when it becomes resistant to CDK4,6 (ie when the cancer cells become resistant to Ibrance). So its not just a continuous form of Ibrance, it's taking out a whole other pathway as well. Awesome!!!
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Cure-ious, I love you.
PatGMc
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PatGmc, thank you for your blessing and support! I will need them. I do appreciate your optimism and wisdom, and how you help all of us stay focused on moving forward, and living our lives consciously regardless of some of our setbacks. Hopefully, this new drug will reduce suffering and prevent the loss of many lives.
cure-ious, yes they did mention it blocks the CDK4/6 and CDK2, but obviously being ignorant of its importance, curbed my enthusiasm at the time.
So, translated in plain English: am I to understand this drug blocks three of the 16 or more roads, cancer can use to get to the various McDonals locations? Of which, Rt CDK2 is their favorite one because it's fast, with no traffic or disruptions slowing it down as it pulls into the drive through window and orders a Big Mac, which metastasizes that location?
If that's the case, then, I too I'm very happy to do my part to block that mtrfker....and on that note: Happy mother's Day to all of you mothers for your love and sacrifices, and God Bless Pfizer and MSK for moving ibrance and the fight forward in the right direction.
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miaomix pat and curious thank you all. Brave educated and supportive women.
Tanya
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Miao- I’m interested in what the dose on the Ibrance will be? Maybe quite low with it being in combo with a cdk2 and being given continuously. Can’t wait to hear about your experience!
Yes happy mother’s Day!
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