Ibrance (Palbociclib)
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Hey all I am home from another day at work. Reading all your posts.
Woohoo to Jensgotthis for the good scans !!!! We always need to celebrate the good news.
Yes we need to hang on for the next meds coming out and maybe a cure??? someday.
So I am a list person. Always have been. Last couple of days have started a pros and cons list about the work/disability issue. I feel I have a good case FOR stopping work, retiring so to speak, and applying for SSD. My plan is to continue to think and compile that list this weekend and I have a MO appt on Monday morning. I plan on discussing it with her then. We need to discuss the TIA (mini stroke) I had and then I am planning on bringing up the subject of retiring/disability. The thing is I am 48 years old and stable on my first line therapy. I feel she will probably discourage me from quitting work. Maybe she is right. Maybe I should not freak out about the hiccup of the TIA as it may never happen again. But if this hiccup is not the time to jump to quitting work, when will be the time?? The next hiccup, or the next, or the next. When will it be ok in her eyes and everyone else in my circle of friends/family.
I do need to get my questions answered---- is the online estimate of SSD payment close to the actual payment, is the date of disability the date I was diagnosed or the date I apply at the Social Security office, etc. I want to have my ducks in a row BEFORE I quit my job. If I find out those answers were not what I thought I would be in a world of hurt since we have to quit our job BEFORE applying for SSD.
Also, does anyone here know HOW to apply. Some have said to go to the Social Security Office, others have told me to do it online. But one person told me that if you choose the wrong site online--whatever that means--- that it could push your application to no-mans-land and it will get delayed.
Time for bed. Not only the TIA scare, but this darn fatigue is getting to me. By the end of the day my mind and body is mush.
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Oh my Pat, it's hard to keep up!
well, this paper shows that a transcription factor called SREBP is turning on genes that cause metastatic breast cancer cells to move around and invade tissues.
Then I read it can be inhibited by some statins, and by something called butulin, which is available as a supplement extracted from birchbark- anybody know anything about that? the thing is, how much would one take, how would you know it wasn't interfering with the drugs you already take, or do something perverse to stimulate the cancer- does it have plant estrogens for example?
But now we can research if any pharma is developing any cancer drug based on butulin properties- thanks!
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hi Nicole,
I suffered through a series of some very uncomfortable mouth sores. Here's my two cents:
I tried everything under the sun naturally to help my mouthsores...and also all the OTC stuff as well.
I kept complaining about them to my MO team and they would look inside my mouth and say, "oh those are soooo tiny!"
Then one day, I had a honking huge mouthsore that was soooo painful I was crabby and in tears. I told my MO team that this mouth sore is soooo bad that I am cranky and damn crabby.
Well, it was when I finally was REALLY cranky that they finally prescribed me the infamous "Magic Mouthwash."
Once I got it, and experienced the relief, I couldn't believe they'd waited so long to give it to me!!
For me it is a learning moment, that if symptoms are uncomfortable, do what I need to do to take care of the symptoms so I am no longer in discomfort.
Maybe you can get the magic mouthwash just in case? I only needed like 3 swishes before it gave the mouth sore a chance to heal and I was pain free.
And for some magical reason, I have only needed to use it once since then, and it's been over a year now. The mouthsores have calmed down. I just wish I had that mouthwash waaaaayyy sooner!
Good luck and (((((hugs!))))))
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LovefromPhi thanks...! I am going to try the Biotene tomorrow and when I go to my MO Thursday I will ask for the magic stuff
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NicoleRod, that is terrific advice from IntoLight concerning mouth sores. I had a real struggle with them during my first months on Ibrance. Regularly eating the Greek yogurt (Stony Field brand, for me) kept them away for a really long time. I eventually stopped eating it and still didn't get the sores for over a year but in the past two months they happened again. Many of us have learned that Ibrance plays fast and loose with side effects and, hopefully, you'll find this one just a passing thing. I did get a tube of Orajel last month and that was helpful.
About the dry mouth, be sure to drink tons of water while on Ibrance.....important for your kidneys.
Hallelujah, Jensgotthis! Wonderful news on the scans! I wonder if they would be willing to do PET/CT scans since you're willing to spread them out. My oncologist's nurse has to go through a pre-certification for me each time but, somehow they give the okay. There is nothing to drink, just an injection through my port. Good luck!
Cure-ious, what would we do without you?!
Love from PatGMc (32 months on Ibrance/XGeva/Arimidex. Metastatic beginning in 2012.)
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Thanks Pat I have always had bladder issues (interstitial cystitis and a bout with recurrent UTI) so I normally drink a minimum of 36 oz of water a day but try for 48oz. I only drink plain water and plain seltzer water so no problem with staying hydrated
I do not really want to do yogurt because I have been limiting my dairy intake to just a little half and half once a week in decaf coffee or a treat of ice cream once a week. So I don't want to add that in daily. Ill try the mouth rinses first 0 -
Nicole - I get the mouth sores some months (Ibrance likes to keep things unpredictable) but I’ve not had to get the magic mouthwash yet (I used it during early stage chemo and it’s awesome). biotene is my best friend and I also use nighttime dry mouth ‘melts’ that my dentist gave me. Keeping your mouth clean with a peroxide mix is also a good idea to keep the sores from showing up. Thankfully they don’t come every month for most of us.
Love to all,
Lauren
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Hi folks...those of you interested in the details of what's like to be on 100mg of the new and improved ibrance as a mono therapy, please check out my postings on the thread titled: Are you currently in a clinical trial...
Best wishes to all
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In case people can't find Frisky's posts mentioned above, here's a link to the first one. Scroll for follow ups.
https://community.breastcancer.org/forum/8/topics/868597?page=10#post_5407514
Thanks for all the info, Frisky.
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JENSGOTTHIS- CONGRATS!!!
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now, back to the Ibrance Dance
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Bezos and Gates are helping start a company GRAIL to use blood testing to detect cancers early in the general population- huzzah!!
https://www.bloomberg.com/news/articles/2019-05-31...
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yes Jen Yayyyyyyy!!!!!! Twirling and salsa dancing over here for you!!!!! Whooohoooo!! 🍾🍾🎉🎊🙌🏽🙌🏽🙌🏽🙌🏽💜💜💜💕💕💕❤️❤️❤️🤗🤗
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Eye twitching anyone? I have had an eye twitch since I started Ibrance. I originally thought it was stress or that I was tired..but just happens everyday ?
BTW I used the biotene seems to be helping !!! YAY
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NicoleRod, I forgot all about that eye twitching! I can't remember how long it lasted but it was weird. I hope yours stops soon.
Yay on the Biotene!
Love from PatGMc
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Thanks Patg!!! Ok Ill mention it to my MO even though I feel like you all know more when it comes to SE's lol. I do wonder though if its from the letrozole and the ibrance just intensified it because I cannot remember if I had it before I started the Ibrance or after.....
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Cure-ious, somebody is going to make a whole lot of money when those blood tests for cancer are perfected.
That technology will be a game-changer like Amazon and like Walmart once was......lots of people out of business.
Love from PatGMc
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NicoleRod, you know what? I think you're right about the aromatase inhibitor and the eye twitching. When I took letrozole years ago my eyes twitched. I thought it happened after Ibrance but it was long before. My poor chemo-brain forgot!
Love from PatGMc
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I noticed something interesting in the ASCO abstracts:
Response to Affinitor:Aromasin (if anyone still takes that) is not affected by ESR1 mutation, PIK3CA mutation, or AKT mutation
It does work better on cancers with high levels of phosphorylated 4E-BP1, a direct protein in the pathway, but I don't think the genomic sequencing studies can tell that, it would need a protein analysis. But at least they realize they need a test, so we can know if we are likely to respond, too many people take this combo and don't respond, but then for some its been awesome. We need a marker to guide us.
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Another interesting tidbit: for patients taking Ibrance or Abemaciclib, strict monitoring of neutrophil levels is associated with a worse progression-free survival, indicating that the doctors who are mandating taking more time off the drug because of low white cell counts is not leading to a better outcome. there are few indications that low neutrophil numbers lead to more infections, because these drugs just arrest their growth (which starts back up when drug is withdrawn) as compared to chemo, which kills them off and takes them a long time to come back. So less monitoring and more relaxed about ANC numbers was associated with a better outcome-
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cure-ious- I’m still on AA- month 3. Don’t know if it is working yet scan wise, but, TMs went down. Not many on this site take it- but, the podcast I listen to, most of the MOs like it. I am tolerating it well-
Interesting about the ANC and the taking time off of the palbo due to low levels - I have yet to hear an MO say that they thought it mattered ( except Joyce O’ Shaunnesy ) I’m interested in this topic
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Nkb, I bet you are a responder!! We need every therapy possible, don't want to sidestep anything that can delay chemo!!
Here is a snippet from another ASCO abstract:
From 2/2015 through 1/2019, 58 pts with HR+/HER2- MBC received Abemaciclib following progression on Ibrance, with 1/3 taking Abemaciclib as secondline. 14 pts got Abemaciclib monotherapy and 44 pts took it with Faslodex/AI. 22 pts required dose reduction, and 7 discontinued due to toxicity.
At data cutoff (1/23/2019), 20 pts had progressed (duration < 90 days), while 21 pts responded for at least six months, and 10 remain on treatment (for as long as 413 days). The most common mutations associated with resistance were RB1 and FGFR1 alterations.
Conclusions: A substantial proportion of patients can benefit from taking Abemaciclib after prior CDK4/6i/Ibrance, although there is a significant group who have developed resistance (such as RB1, FGFR mutations).
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More from ASCO:
ARID1a mutated breast cancers are significantly more sensitive to palbociclib, SHP1/2, and mTOR1/2 and SHP1/2 tyrosine phosphatase inhibitors.
So for those who have sequence information, mutations of ARID1a means the cancer may respond well to Ibrance and Aromasin/Affinitor (not sure if we have SHP1/2 inhibitors in clinical trials?)
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I've been so quick to blame Ibrance for all the side effects and never researched the ones caused by XGeva until tonight. You can google and see for yourself but the one that jumped out at me was itching. I've been through some spells with lots of itching on my lower legs and the top of my left foot. Even when the rest seemed to subside I've had a wildly itchy spot on that foot with a red scab that hasn't gone away in over two years.
Well, guess what! It's gone. Guess what I did differently. I asked my oncologist to consider changing my XGeva shots to every other month or every third month. I'm just completing the first full month without it.
Ibrance, I believe I done done you wrong!!
Love from PatGMc
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Cure-ious and others, about the low ANC count with Ibrance use----
I have heard on here before about Ibrance being different from regular chemo in regards to low neutrophils and the infection issue. But I have never really understood it. In regular chemo, the cells are killed off thus if you are exposed to an infection your body doesn't have the cells to fight it off. And with Ibrance the cells are "sleeping" and with stopping the med they will "waken" and start working on the invader infection. If you are lucky enough to get the infection on your week off the Ibrance, the cells are awake. But if you are exposed to something during your 21 days of Ibrance the cells are not able to fight the invader. Soooo..... are we not still at risk of infections. ????
I try to be proactive. Good handwashing, staying away from people who are sick, and I even use bleach wipes on the handles of shopping carts. Better safe than sorry.
My MO still does lab work on my week off Ibrance to see the level before beginning another cycle, but we do not hold the Ibrance. My ANC is usually 900-1000 on that week off. But if you read the literature, the NADIR (lowest level) of Ibrance is day 15. At the beginning of all this we did labs on day 15 and my ANC was as low as 400. We don't do labs on day 15 now, so I don't really know how low it is going. Maybe for the best, LOL.
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Yes, I’m learning not to blame Ibrance for all side effects either. Early on, I blamed the effects of compazine-an anti nausea med—-on Ibrance but quickly realized my mistake and ditched the compazine.
And this past week, I thought to look up side effects of Aromasin because I began that about the same time as the Ibrance. Sure enough, “dizzyness” is one of its side effects, and I don’t see that listed as a side effect of Ibrance. I have been experiencing occasional dizzyness, say if bending over to tie a shoe, and my first instinct was to think Ibrance was the culprit. But, as i said, I’m learning to look at the big picture.
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Divine, you can bend over to tie a shoe??? And if so, how do you get back up? Do you mean from a sitting position? I can do that.
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Hi everyone,
I stopped at the Pfizer booth at ASCO today to tell them thank you for the drug and for the patient assistance program. Thought they needed to hear from real people who are benefitting from their drug..
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Thanks Iwrite! I do think it is important for Pfizer to hear from the real people benefiting from Ibrance.
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If you get an infection, stop taking the Ibrance and your immune system is back to fight it off, and no doubt there has a higher residual immune system function than if the cells had been killed, so its not been a problem- the ASCO abstract is arguing that oncs being too strict over the lab numbers can make it worse, if anything
A recent discussion:
https://www.onclive.com/peer-exchange/advanced-bre...
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