Ibrance (Palbociclib)
Comments
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great job, Sandi!!!
I would just add to take an NSAID (baby aspirin or ibuprofen or celebrex) if there is PI3K mutation (because active PI3K turns up COX2 and uses it to grow, and NSAIDs inhibit COX2) or if you are going to take immunotherapy (because it can inhibit a type of immune cell that is shielding the cancer from the immune system killing). I take it pro-actively, hoping to prevent or delay the PI3K mutant cells from taking over
And then also to do nightime fasting or consider adding metformin if you are on PiqRay (for PI3K mutation), because for that cancer subtype you want to keep sugar levels low
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Sandy-I was just literally thinking about going through the old post to come up with a list Incase of progression from I/F. My MO said that our hospital doesn’t offer tumor testing. I’ve never had that done but see the important of it! Hopefully, I’m on ibrance long enough for them to start testing locally. It’s overwhelming trying to remember all the different mutations and available options so I totally appreciate you writing this list.
Curious-thanks for the follow up and all the research you so willinshare with us!!
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Sandi, Also to add to your list, is what Ann has been telling us about her experience, which completely meshes with this report:
FGFR1-amplified cancers tend not to respond ( or not for long) to Ibrance-Femara, but are very sensitive to Everolimus-Exemestane (AKA Aromasin-Affinitor):
https://www.ncbi.nlm.nih.gov/pubmed/31371343
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I sure hope so Cure-ious. I haven't had testing done either but I had a quite lukewarm response to I/L over six cycles. Stable lung tumor, stable bone lesions but new lesions each of two CT scans. Still a bit heartbroken over it becuase I/L was so easy, but I hope to have a good response to A/A. Fingers crossed. I'm Er positive but weakly PR positive. I have a friend here who progressed on I/L after 12 months and went on to A/A with very good response but was taken over to Piqray becuase fatigue was an issue on A/A. MO decided rather than lower Afinitor dosage, she'd go right over to Piqray. My friend does not ask questions of her MO. I'm not sure I have the whole story but I did wonder - if A/A was working then why change.
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Cure-ious, thanks for the FGFR1 amplification reference article. So afinitor might not be such a bad guy after all for some folks.
P.S. I am on 37th cycle of Ibrance (34 cycles at 100mg). Still hanging in, especially with organ (liver mets).
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Wow! What wealth of knowledge and information here. I have been reading the site daily for words of encouragement and stories of healing. Your assuring words have brought me up form the lowest of the low. I recall PatG’s comment to me about not having an expiry date marked on us. I took those kind thoughts and comments to heart.
Just want to share a bit of good news as I got my scan results last week. The report showed the word “unremarkable” for all organs and anywhere in the body. I wasn’t sure what it meant and the MO confirmed that nothing was found. What a change from my initial diagnosis with multiple tumors on the chest wall, liver and bones. I just completed cycle 22 of Ibrance and letrozole.
I know it doesn’t mean that this will stay the case forever, but there sure is hope. So, I thought I would share the news and bring some light to some of us especially those with organ involvements.
Keep strong everyone!
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Congratulations, thereishope4us, good news is the best medicine, long may you do the ibrance dance.
Thanks cure-ious and sandi for your hard work collating all that information and sharing it in a way I can understand, it will be very useful when talking to 'the experts'.
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Great news, thereishope4us! May you stay NEAD for a long, long time!
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Congrats thereishope4us! That is great news.
Cure-ious and Sandi, thank you for sharing your info in a way that we can understand. It is a gift to be able to understand the med information and then be able to convert\share it with others in layman terms.
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Anyone on Ibrance get progression from liver to bone, while on treatment? While the liver remained stable? My wife has been on Ibrance for over 2 years. Her tumor markers remained low and only moved marginally, like 2 points up after being relatively stable for the last two years. Now they are doing a bone scan, as something suspicious that was previously thought to be a bone bridge, has increased in size. One of her vertebra. So now they suspect it is bone metastasis. Yet her previous bone scans showed no change, and her liver mets remained, and remain stable. So, if there is progression, it is bone only, and accompanied by virtually no change in tumor markers.
Anyone have or hear of something similar?
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Thereishope...congratulations! So happy for the good news. May this continue for a long run.
Cure-ious, as always, thank you for the wealth of information you bring to us. And for all the time it takes you to prepare it.
I am on cycle 44 at 125 mg and still hanging in there. There are days when I ponder a dose reduction but then back out since I have had miniscule new growth lately and I don't want to give the slightest chance of the C gaining strength. I just got over a bad sore throat (thanks to my 4 year-old DGD) which happened at the end of my pill cycle when my blood is at its weakest. I was out of state when it hit the worse and went to Urgent Care because there was no improvement after a week. I am well now and thankful for this medicine. I had extensive bone and liver mets originally.
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Husband...I want to add in here to what you asked about...and this is JUST MY OPINION from MY experience and from others that I personally know...
When they found my liver mets they did a FULL BODY CT BONE Scan and a CT scan of abdomen...I have with and without contrast. I had pain in lower left back and left hip for over a year and half at that point...NO BONE METS SHOWED......
I go to NY start ibrance..I insist that something is not right in the bones....they do an MRI..find the bone mets. So it looked like I had liver mets first..but I didn't....I had a friend that was stage 3 she had numerous stage 4 friends...even 1 like me Stage 0 - 4 years later stage 4 ...she said something to me I never forgot...she said that HER2- BC when it recurs tends to go to BONE then ORGAN.... so when they found my liver mets..I was like..."something is not right"...she said everyone she knows it went to bone first...now I am not saying it can NEVER go to organ first...but I also now have yet to meet someone that it did go organ only first. So if it is in your wife bone I believe it was there all this time. Lets not forget that CTC's can lay dormant for YEARS before "WAKING UP".....
I should have said..so EDITED TO ADD : my point was that if those are bone mets I don't necessarily think she progressed on Ibrance..she may have had them all along... and if she did progressed then that might still be working bc the liver mets are stable. Like Moomala...she only had some things progress not all like me...
I will pray for your wife that it is no cancer there. Please keep us posted
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Husband I began my ibrance/letrozole treatment in May and had initial dx of lung and bone mets. My lung mets has been smaller on one scan and stable on the next. The bones they just can't get under control yet. So I'm a little different than what you are asking but I think it's good to know that you can have partial response to I/L - that's what happened to me. Also good to note...my most recent CT scan showed stable bone mets. The nuclear bone scan which has not been done in six months, showed all areas of mets stable but new uptake in several bones. Again - that was called partial response. Well - one MO called it treatment failure and the other said partial response so I'm going with partial response becuase it feels better to me.
Also to note - between my first and second CT scans I suddenly popped up with sclerotic lesions on several ribs that were not on the first scan. The radiologist said they may have been occult on the first scan. So. That's a little disheartening and uncomfortable and uncertain. But it is quite possible that bone mets have been present and not seen.
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Thereishope4us- Woohoo. Love the news. Nice to hear stable people with organ involvement.
I had my CT today so the waiting begins.
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Brilliant news Therishope4us!
Candy... we’re with you on the wait.....I also have a scan on Nov 5th, so will be next on the wait list! Pants isn’t it
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thereishope4us... I'll bet you never dreamed that one day you'd be sharing your good news of how wonderful it feels to be unremarkable!
But for what that really means to you... Congratulations! 0 -
Husband, Thereishope,IntoLight, and Sandy - almost or more than 2 years on ibrance with organ mets...this brings me so much joy and hope tonight 🙏
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Candy lifting you up....thereishope great news0
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Candy,
Hoping for good news for you.
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Does anyone have a suggestion for addressing thining hair? I've added biotin to my supplements almost a month ago. Is there anything else I could do? My hair is getting really thin.
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Hoping for ggod scan results , Candy.
Simone, my hair is not so thin but I essentially have no eyebrows.
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Hi dutchiris,
I bought rapidbrow for my eyebrows. That seems to be helping with those.
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I also endorse RapidBrow and RapidLash. I saw significant improvements in about a month. My hair started thickening when I increased the Biotin to 10,000 mcg per day.
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Thanks Chicagoan. I'm going to try increasing the biotin.
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Thanks for all your good wishes on my recent scan result. Though I know with this journey, we can’t take anything for granted.
I was thinking how nice it would be if I just could just get more hair back! Envious of LovefromPhilly’s gorgeous hair at the fashion show
I use a instant hair filler when necessary and will also try Biotin I am inspired by all your stories. Piggy99’s success at Harvard Law School, IntoLight’s 44 cycle, cure-ious’s wealth of knowledge, PatgMc’s constant support and humor.There are so many more. You are all in my thoughts and prayer.
Best of luck on your upcoming scans, results and treatments.
There is hope...0 -
Thereishope...congratulations! So happy for you!
Candy...keeping you in my thoughts.
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ThereisHope: amazing news! So happy for you!
It's been so long since I've checked in. Sorry to see others have had progression as well.
I am switching from Ibrance to Verzenio (in Canada! Fingers crossed) as my mediastinal lymph nodes that were radiated two years ago are back to growing again. 2-3cm. Affecting my esophagus which has been really rough. 😔
Currently waiting for approval of Verzenio by my husbands private health insurance and co-pay application etc. fingers crossed I get it. It is newly approved in Canada so I would be one of the first on it at my local clinic
I was on Ibrance 75mg nearly two years (20 cycles) and always had mixed results and crazy neutropenia. Overall we watched lung nodules increase by millimeters each scan. Then these lymph nodes have awakened again. So it is now time to switch.
Cure-ious: always appreciate your intel and reading about next lines, studies etc. It is because of the info you post that I am making the choice to give Verzenio (Abemaciclib) a shot before moving away from CDK4/6s entirely.
Good luck to all on Ibrance! I wish I could have stayed on the train longer but grateful to have squeezed out two years of it. Hopeful I will access Verzenio and it will provide a response.
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Moomala, do they consider radiation treatment for the schlerotic bone lesions in the ribs?
Ashly, I hope you get the verzenio. Do keep us posted. What province are you in? I am not sure under what criteria it would be available in Manitoba as second line treatment after failure on Ibrance. They seem quite strict here in our province to 1) Only prescribe costly drugs for exactly the situation they were approved under 2) To not allow two tier medicine by allowing private insurers to pay for a drug that the public system doesn't cover. Although my wife is on ibrance only because she is getting it under a compassionate approval basis, prior to it being available here publicly funded, and it is co-paid by her private insurer and Pfizer. But that was a weird case, as she got approval and access before it was available, under the compassionate basis, which ended on its public approval, but she can still continue to get it.
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Ashlyn, I hope you can get the Verzenio and that it works wonders for you. I don't understand the Canadian health system at all, but it sounds like you need both national and private insurance for costly new medicine? Just a naive question... I will watch your posts with interest for when I need a change.
I have no suggestion for thinning hair, but mine has begun to thicken on its own however it is wiry and frizzy. I still have eyebrows too although they are also thin.
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I forgot to ask in my last post...
has anyone had inflammation in their lung while on Ibrance? I had a small amount of it bottom lower quadrant of right lung in my last scan. MO wasn't overly concerned but I am. Lol. Was told to monitor for SOB Incase it could be a blood clot. But it could also have just been a sign of a viral infection. I have been coughing way more. Though I haven't been sick. I think I'm coughing cause of the nodes butting up against my esophagus
Lung inflammation anyone?
husband: lucky she is still getting it! Grandfathered in I suppose.
I still don't know if I will be approved for Verzenio but I'm hoping. I had such bad neutropenia all the time so maybe that will make me eligible. We will see.
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