Ibrance (Palbociclib)
Comments
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JunieB - it’s tough during those times when something hits you like a ton of bricks, as you just had happen. Even when we know something on our heads there is a different impact when it also hits on a total and emotional level. The waiting process for the scan just makes it harder. Hang there, know we are thinking of you and let’s hope it something else. Is there something that you think could be causing the fractures? I have osteoporosis and that would probably be my first thought if I were to have fractures.0
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Ciaci & JunieB - Thank you for the advice on dry eyes! I'm going to try the drops and drink more!
PatgMc - good luck on your scan! Sending you good light!
NMJanet - Wow! We are practically neighbors! I live down at the end of 217 and south 337. We often go to Edgewood for shopping, etc.
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It's PatG over here stamping my foot and wondering why an oncologist would make any comments that squashed the hope of his patient. When we had the Flying Colors Support Center, my Dr. Smith told me he felt the hope we offered did as much to heal his patients as the chemo. Hope is a powerful thing. JunieB and IntoLight, don't forget that there are people who have been on Ibrance for 5 years (so far)! That can be you too!
Cure-ious, do you know anything about the Ibrance trial at MD Anderson using 25 mg of Ibrance with another drug that is expected to keep the cells from starting to ignore the Ibrance? (How's that for a great scientific mind?!)
Happy Tuesday, y'all!
PatG
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PatGMcR and IntoLight ...thank you so much. I'm sure I'm just making a mountain out of a molehill but you really are gems xx
Still praying for a good result for you Pat.
Hugs to everyone
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I wrote an update on me yesterday, but no one responded. Cure ious my MO is convinced that Ibrance is the key player for me. After re reading my recent report I think she may be right. I think if I respond as well on my next scan, I may be close to NEAD.. I never dreamed that w would be possible for me.
My MO says that since I am ERS1, Femara is doing nothing for me. She has to order it with ibrance or FDA won't approve it. I believe her, it makes sense in my case, even though studies don't prove it. My only mets are in lung and chest and they are taking less and less uptake every time. Now, if my liver mets, no uptake since one year ago, will stay that way, I could get to NEAD on just Ibrance.
Thoughts, anyone?
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Grannax, I am not one of the scientists here so I don't have good knowledge to respond to you properly. What I do know is that we are all different with many "moving targets." I am interested to know whether Ibrance works alone in ladies with no estrogen since I had an oophorectomy 30 years ago. If that is true, then why am i ER+ PR+? Just a thought...probably shows my ignorance.
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Hi everyone - the sun is shining and the wind calmed down here in the west, unlike the east, both Canada and US are getting lambasted!! Does anyone else look forward to the scans? I am the opposite of many as I prefer to know and embrace them, good or not so good!
PatgMc - wishing you great results! I too cannot believe an MO would be so negative - I read my initial stage 4 report and MO's words were very reassuring, even in mentioning at this time the disease is incurable but controllable, as well as new medicines are being discovered regularly.
Leapfrog - sending you positives and hope for great results!! Hoping your active sites become less so and you remain stable and clear!
Grannax2 - not sure how I missed your update - sounds like great news for you! Bringing me to the question what is uptake?
So much more that I need to learn, luckily this site is a wealth of information and, best of all, support!! Prayers and postive energy to everyone!!
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Pat, thinking of you today, praying for clean scans! I’m on the same timetable, ct scan tomorrow, pet scan Friday, then I have to wait a week to get results! Hate that wait!!
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GracieM2007 - I am just thinking that is here scanxiety comes in for many, it is the wait for results, not the scan itsefl?! I get my results either the same day or the next day so don't have time to stress much, can you not access them sooner through your regular GP or MO office? I have not yet had a PET though so maybe that takes longer? Either way, positives and prayers for fantastic results!!
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Didn't mean to give the impression that my MO is negative, She has been amazing and I look forward to my appts. It is totally me that gets nervous. June 9th will be my 46th wedding anniversary, and my 2-year onc anniversary appt (yes, I met with my onc the 1st time on my anniversary!) I totally plan to reach my 50th anniversary and beyond!
On a side note, my DD just left for 4 days on a work project so I have my soon-to-be 3 year old granddaughter. I get the joy of seeing her every day as she lives with me, but I don't usually have full care. This my off week so I am hoping I feel good.
Blessings on today's scans and appts. Remember to celebrate small joys!
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Sounds as though you got a very happy report, Grannax....congratulations!
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Your MO is right to push for scans, terrifying as they are, we need to know when to move forward in order to be there when better treatments pop up, but she's wrong about the idea that you are beyond the time for progression from the trial . Whereas the average time to progression for everyone was two years, he recently updated information from Paloma-3 reported that bone-only mets users had median time to progression of three years- and remember that means half of them went beyond three years. Not time to panic just yet, but get the scan..
MaryLark- As you say, at least we understand some the consequences of specific gene mutations and what to do about them!! What are you taking at the moment?
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Intolight. The biopsy of my tumor showed ERPR+HER-. But when I had genomic testing through Foundation One it showed ESR1 mutation. I think it means that through all my years of taking anti estrogen blockers and aroatace inhibitors, my tumor figured out a way to resist ( not respond) hormone therapy. When I do have progression, mo will use one of the new tumors to biopsy and send to F1.ky uptake is Janky my easy term for how much FDG tumors take in. In a PET, they inject you with glucose and a tracer. When you get under the scanner tumors light up with intensity. They measure the intensity by how much of the tracer is in each tumor. I call that uptake. For instance when I was DX, the uptake of tracer was as high as 7.5, now most tumors have uptake of 2.6 or less. They are less active.
Cure ious still interested in your take on my mo opinion.
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For endocrine-resistant cancers, including ESR mutations of the estrogen receptor but possibly including other mutations like those MaryLark is talking about, everybody should keep an eye on CDK7 inhibitors like THZ1, not yet in phase 1.
CDK7 was shown to be important for metastasis of endocrine-resistant MBC:
http://www.dana-farber.org/newsroom/news-releases/...
includingfor cancers with ESR1 mutation: https://www.nature.com/articles/onc2016382.pdf?ori...
THZ1 was already shown to be a good inhibitor for triple negative MBC:
https://www.cell.com/cell/pdf/S0092-8674(15)01174-5.pdf
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC45836...
https://www.ncbi.nlm.nih.gov/pubmed/28455421
No idea about side effects, and of course preclinical work is using it in combination with different therapies.
Hope this one pans out. CDK12 is another one looking very good thus far, but not even as far along as CDK7.
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NMJanet & Wandering - I just qualifed for a 8000 grant to help fund the Ibrance. Haven't started it yet, pills to be delivered today and i see my Onc tomorrow. It will be so helpful reading your posts on your experience with this. I am also on Faslodex and Xgeva. So far experiencing shortness of breath. I wish you all well and hopefully talk to you soon!
crissy
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Grannax,
This clinical trial treated patients that had already failed at least one line of hormonal therapy with Ibrance alone or Ibrance+ the same hormonal agent the patient had already failed. Interestingly, some level of response was seen in both arms, and the response appeared to be more pronounced for the combination, suggesting that Ibrance reverses resistance to the hormonal agent, at least for a while.
http://jhoponline.com/breast-cancer-articles/17212...
So, your MO could be right that the Ibrance is working on its own, but it's also plausible that it's working by re-sensitizing your cancer to letrozole, even though you're supposed to be resistant.
If you don't have terrible side effects from the letrozole, based on this study I would probably want to continue it as they did get better responses with the combination, but it's food for thought.
This other article (I could only get the first page, but the title tells it all) describes the case of a woman that achieved a complete response on Ibrance alone (she had undergone a double oophorectomy earlier in life). It's difficult to extrapolate from one case, but it certainly suggests that even if not common, it's possible for certain subsets of patients to respond to Ibrance alone.
https://www.clinical-breast-cancer.com/article/S1526-8209(17)30533-5/pdf
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Cure-ious, I don't think THZ1 is being developed anymore. Looks like the Syros, the company co-founded by Nathaniel Gray (who was involved in the discovery ofTHZ1) is developing a different CDK7 inhibitor called SY-1365.
The good news is that it's already in Phase 1 clinical trials for advanced solid tumors. The even better news is that one of the recently announced expansion cohorts is for HR+ breast cancer in combination with fulvestrant for patients that have already had a CDK4/6 and AI treatment. The clinical trial design poster is the first publication listed here: https://www.syros.com/platform/publications-and-abstracts?category=sy-1365. The breast HR+ mouse data looks pretty good, but of course the tumors in the mice were not tumors that had failed an AI+CDK4/6 tumors like those expected to enroll in the clinical trial.
The somewhat less good news is that it's an iv agent, but I won't look a gift horse in the mouth. The HER+ therapies are iv and somehow people manage to live full lives around them. I hope this treatment can do the same for us - it's probably the highest on my list of things I would want to try after Ibrance/letrozole.
Thanks for bringing it up!
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piggy thank you so much for those articles. Yes, I am still taking letroxole even though I hate the SE.
I'm kinda like the lady in the study. I've had oopherectomy, adrenalectomy many years ago. I'm 70. I had the hysterectomy with oopherectomy when I was 50. I had the adrenalectomy on left side because it was producing too much aldosterone. That was ten years ago. I have a ridiculously strong family history and this is my fourth DX. After my first DX at 44, I never took HRT. I do not have BRCA 1 or 2.
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Chrissy50: Thanks for the post. I don't know what an 8000 grant is but I too am getting help with the cost of Ibrance. I started my second cycle last Wednesday. So far no major side effects. I have some cranky things happen but I had had those for several years. No extreme fatigue but I am on 100 mg dosage. My tumor marker went down last month and other labs stayed about the same. I am on Faslodex and Xgeva but have been on them for quite some time. I find it a bit disheartening that this will continue for the rest of my life but I suppose I should be grateful for the meds that are available. We live a rural life in Montana so I appreciate the encouragement and good "vibes" from this website.
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Grannax, I went to sleep thinking about you last night. I celebrate your liver and the procedure you had done, my friend! I was going to hop up and send you this message but I was too drowsy! I look forward to your NEAD celebration!
I went back and read everything again and I've decided you're having a Spontaneous Remission, girl! Yes, I like the sound of that and I think I'll order one up for each of us!
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Intolight, I haven't read all the responses so someone may have already said this to you. The body keeps making estrogen even after the ovaries are not producing. Actually, we make androgens that are converted to estrogen. The AIs are inhibitors of that process. Please, one of you scientific people explain this better than I did!!
PS: Okay, I found something that explains it better:
"Aromatase inhibitors work by blocking the enzyme aromatase, which turns the hormone androgen into small amounts of estrogen in the body. This means that less estrogen is available to stimulate the growth of hormone-receptor-positive breast cancer cells."
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Pat, I think your explanation is great.
My blood counts were low yesterday, so I have to go back for retest next week before I can restart Ibrance. Neutrophils were 0.80, so not too bad. They will bounce back. This is not an uncommon occurrence for me although it doesn't happen every cycle. I am mentioning it now to let people new to Ibrance know that having low counts does not mean that you will not be able to tolerate Ibrance. My neutrophil count fell to 0.400 and my WBC to 1.0 during the first cycle. They took several weeks to recover, and my dose was dropped to 100 mg beginning with cycle 2. I will be starting cycle 23 next week, and I am doing great. Hang in there.
IntoLight, Happy 46th anniversary and 2nd onc appointment anniversary next week. Both are worth celebrating, the first because it is a fantastic to have 46 years with someone you love, and the second because that onc appointment was the beginning of treatment that will let you see not only that 50th anniversary you mentioned, but many more beyond that.
Three years ago today I received my bc diagnosis. I didn't think I would be around this long. Now I feel so good I think I will be around for many, many years to come. I still have a lot of living to do
Hugs and prayers from, Lynne
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IntoLIght - Happy Anniversaries!!! We'e been married 43, so catching up!
There is no rhyme or reason for blood levels on Ibrance; after my first cycle my neutrophils were .3 (critically low, I had to wait 3 weeks off before they got to 1.0), after cycle 2 they were .4, took off 2 weeks, and after cycle 3 it took 2 weeks to get to 1.0)!! Go figure...hang in there and don't get discouraged.
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Hello, Dancers! I wrote this on my Facebook page last night and thought I would share it with you since you're included:
Don't you love God's promise about all things working together for good for those who love him? Today was the day of my PET/CT scan and for many, these are a source of pure anxiety. My sweet Michael drives me, not because I can't go alone but because he doesn't want me to. The waiting room was filled with people in all sorts of distress, people who shouldn't have come on their own. I'm so thankful to know the blessing of Mike.
As I filled out the paperwork listing 25 maladies to mark in the affirmative or the negative, I was thankful that my only "Yes" was cancer. I imagine others there were glad to check off everything but cancer! Funny how God alters the light in which we see things.
I got injected with some radioactive stuff called FDG and laid down in a room with no stimuli for an hour. But it was a fail! I was stimulated to happy tears by the kind voice of a radiology tech outside my room. A patient with difficulty getting stuck was being comforted in the most beautiful way: "You are so incredibly brave. I'm going to go out and tell your wife how much courage you have," the tech spoke with respect to the elderly man but with the knowledge that everyone in that situation is really a little child. My port also misbehaved today which brings out my inner toddler and I too received the most tender care.
I spent my time in the tiny room praying for friends with cancer and a whole assortment of problems. I prayed for lots of you. I also spent time being thankful for all the happy years I've had getting to this old age of 68. At first I pushed one year of clinical depression at 28 off to the side and sort of thanked God for all except that one. Then I had an epiphany...That's the year I'm most thankful for! It's the year I gave up my ignorant prejudices, the year I promised God I would seek out hurting people, the year I discovered that the meaning of life was so simple....love...God's love for me and mine for others.
All this to say, my friends, that whatever the FDG lit up I have been truly blessed by that 40-years-ago depression, by cancer and the prayers of those who have loved me through it. I've been blessed by texts in that tiny room from Mike and Amber. I was blessed by new waiting room friends today who shared their struggles with me so God could use my meager words of comfort.
Mike always stops on the way home and gets me two Taco Bell crunchy nutrition bombs (ha!). Did I throw up when I got home? Well, yes, but I wouldn't change a single day of this journey because God is taking something bad and using it for good...just as he promised.
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Hallelujah, it's Oldies Day on the Ibrance thread! My Mike and I will hit our 50th anniversary in January. I plan to take in all your hopeful words and celebrate your prayers so I can be there! Intolight, Happy #46 and janky, Happy #43. We all were surely babies when we married these older men! (Actually, we were 19 and 20! That's how we did it in Alabama!)
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Thank you PatG for your sweet words .I so hope you are right. We will certainly celebrate. When do you get your results?
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Pat, That was very well written. Thank you for the beautiful post.
I will add myself to that list of those celebrating long marriages. My DH and I will celebrate our 49th anniversary on June 21. We were both 19 when we were married. Funny how much older that seemed then than it sounds now. So, Pat, I am also 68. Hmm, I think that you should not yet call yourself old. An Internist once told me that she was taught in medical school that a person is considered old when he or she reaches the age of 85. So, you and I are a couple of spring chickens.I will be here in 17 years to celebrate with you as we enter old age.
Hugs and prayers from, Lynne
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50sgirl AKA Spring Chicken, Happy #49! Becoming old doesn't scare me. My mother died at 56 and my sisters and I all secretly thought we might not make it past that. We're now 68, 70 and 72, all breast cancer survivors! I will say this about the rapid aging caused by the meds, these dangly upper arms with crepe for skin are gross! But I'll take that 17 and raise you 5, 50sgirl!
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I have an update from my friend that is trying the alternative dosing regimen for palbociclib, of 75mg (for this patient as that was previous dosage) 5 days on 2 days off, repeat indefinitely, as compared to 3 weeks on and 1 week off.
After previously stalled out tumor markers, the tumor markers have began to drop again, and neutrophils are slightly improved. Other blood parameters are also improved. Possibly some improvement in fatigue, but that is rather subjective.
Sounds like it might be just as good or better than the standard dosing regimen. This is after one month on the alternative regimen.
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So much to discuss with my onc tomorrow. Thank you all for the research interpretations! I was 19 when I got married too. Seems like the magic year back then!
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