Ibrance (Palbociclib)
Comments
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patgmc, I’m an artist, too. I had been scared of going on an AI (offered by my MO when I completed treatment for my first dx)because I’d heard so many horror stories of joint pain and didn’t want to risk it in my hands.
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jennyunderthesun, my sister, unfortunately, was one of the few people I know who had a permanent condition after stopping letrozole early. She still has a trigger finger caused by it. I'm thankful my problems cleared up within 6 weeks after stopping.
What kind of art do you make? Please show us some here! It took my second diagnosis of BC to get me back to it after stopping for years.
Love from PatGMc
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Sorry to hear that it lingered for her. That must be frustrating. I’m a paper cutter: https://www.jennyleefowler.com/#/embodied/
Glad you found your way back to art ❤️
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jenny, your work is just wonderful! I'm especially drawn to "Thicket" but love lots of the others too. Do you use scissors or blades?
Cutting paper is my thing too but in a different way. I combine collage with painting. Right now my work is on Artist Pat Godfrey McRee on Facebook. My gallery is working on a new website....LRoss Gallery in Memphis....and I'll post a link when it's up.
I'm hoping we can encourage more of the Dancers here to make art. It's such a healing thing.
Love from PatGMc
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Wonderful, Jenny!!
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Wow Fab Jenny - what intricate, delicate work! Your themes are strong and emotive too which balances out the style.... Not that I really know anything!
Look forward to seeing PatGMc’s work too.
Great to see such inspiring women!
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thanks for sharing your work, Pat. I especially like the Liberty sisters one. My step dad uses a similar technique with painting and collage. Lots of room to play with that! I use scissor and blade depending on the scale of the piece and how much interior work there is.
Art can begood therapy.
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wow Jenny your artwork is sooooo beautiful!! I absolutely love it! Thank you so much for sharing!!
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wanted to share a funny little Ibrance story!
My friends knew about my GI issues I was having last month (diarrhea and gassy, some stomach pain and mild nausea).
Last night I was at dinner at their house and they were asking how my stomach is doing now. I started to explain to them about how we folks on this communy board call it the “Ibrance Dance 💃🏿“
Well - my one friend thought I said “Ibrance Stance” and imagined it looked like squatting over a toilet 🚽! My other friend pictured that it was like doing a “I have to go to the bathroom and poo 💩” dance!
😂😂😂😂😂0 -
Love from Philly 😂😂
Jenny - Oh my goodness - your artwork is amazing! Both you and Pat have my total admiration for your amazing skills! I too hope that no cancer or cancer drug ever interferes with your ability to continue creating!
Love to all,
Lauren
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Jenny just went to your website.One SO speaks to me and my eleven year BC journey. Do you sell these beautiul works of art ?
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thanks, lakewoman. Several of them grew out of my experiences over the last three years since my first dx. It means a lot that they resonate with other survivors.
Art is my livelihood. I’ll send you a link to my shop or feel free to drop me a note about the one you’re interested in because I often have pieces that are available but not posted in my shop. No pressure...
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I am curious about the history of Ibrance. I well remember the beautiful Romansma, who began this thread, which was in February, 2015. I believe the clinical trials had better than expected results and the drug was fast tracked for FDA approval. But I'm thinking Romansma must have been in a clincal trial since I thought I read that approval came 2017. I do recall there was a lot of media attention about Ibrance around that time. I was also wondering the manner in which the drug operates to prevent progression.
I see one possible side effect is thinning or loss of hair. What do you think I can expect?
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Mrs.Divine; My worse se's are constipation (seems most get the opposite lol), fatigue and loss of hair. I do miss my hair as it's so very thin now and looks awful. I get other se's from time to time like nausea and sweats but they come and go. I'm able to control the constipation but not the fatigue.....so I seem to rest a lot.
Jenny and Pat I love your art. Absolutely no talent here but I used to make jewelry. Maybe I'll give it a go again lol.
love to all,
Cathy
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Divine, my hair sort of came back after taxol, but I blame the thinning and cruddy texture on the letrozole. It has turned me into a hundred year old woman, forty years too soon. I truly HATE the letrozole. I've talked to onc about stopping or changing, but not so far. I think the Ibrance is fine but for me, it wouldn't work alone.
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Devine- What we call the Ibrance Dance is managing the side effects of Ibrance which can change some from cycle to cycle. I have been on Ibrance since Nov 2017 but just started hair loss this past Nov (1 year into treatment). My hair is A LOT thinner now and I hate that side effect--I never had thick hair and now it is horrible looking. I also have constipation and fatigue. But with being on Lupron, Letrozole, and Ibrance I don't know which is the culprit for all the symptoms---dry skin and hair, hot flashes, joint and muscle pain. And my nails are more brittle and thin. LoveFromPhilly posted recently that she was having an issue with diarrhea that she previously had not experienced. Some have had mouth sores that come and go.
Cure-ious can better explain the mechanism of action of Ibrance, but I think it inhibits a protein that causes the cancer cells to duplicate. That is the way I understand it.
But with all this said, I think Ibance is God sent. It is prolonging my life.
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Anyone have knowledge about B-vitamines.. Possible to take B 12 in combination with aromasin, Ibrance... ?
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Devine, About the hair thinning, I have pretty thick hair overall but notice thinning at my temples. I also notice drier hair and skin, and my nails develop ridges if I don't rub oil into them on a regular basis. It's really important to drink lots of water on Ibrance. Otherwise, I definetly have fatigue although my docs says Ibrance is not to blame. I'm lucky that my counts have all stayed in normal range. I do feel better when I'm exercising, especially swimming. Ihave found through trial and error that I do better when I take my Ibrance at night. You need to take it with a meal that has some healthy fat to it. When I took it in the morning, I seemed to have more sleep issues. All in all though, this is pretty great treatment. I wish you well on it and that you get years and years.
About the history, my recollections match yours. I'll add thought that there are still people on the initial trials. SABCS trial update has shown a PFS for bone only mets of 33 (or 36?) months now; previously I think it was 2 years. There are new trials looking at whether we can go on to one of the other CDK inhibitors after Ibrance fails. My doc had told me my next treatment would likely be Faslodex + Kisquali, but they are seeing good things with Abebmaciclib. ANd Cureious is keep an eye on trials where they're paid Abebmaciclib with immunotherapy.
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DivineMrsM, Ibrance got accelerated approval in February, 2015, because of the astounding results on the trial. I've run into several online who started taking it during the trial and are still dancing! I began on October 2, 2016 and I know there are many here who started before that.
When my first metastatic disease appeared in 2012, I took Taxol/Carboplatin for 6 cycles. Something you would barely call hair....okay, fuzz grew in with big gaps of nothing. I have since just had my husband shave the fuzz and I wear a wig when I'm out and about. I wish I had hair until I remember the trouble and expense it took to maintain it!
I once would have thought it impolite to talk about my bowels among friends but here we are! Constipation would be my normal state of affairs if I didn't eat Raisin Bran and prunes. Those let me stay quite normal when I remember to eat them. I've had only a few bouts of diarrhea and I wonder if I might have had those even without the Ibrance.
MuddlingThrough, whether the difference in taking Arimidex vs. letrozole for me was in adding the Turmeric or not, my experience is so different now. I know others do just fine on letrozole but some don't. My philosophy is "Ask for what you want." I've known people through the years who have also switched to Aromasin and done better. Your doctor may be stuck on letrozole because it's what they used on the trial.
Love from PatGMc
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Formy Ibrance friends, next month it will be 4 years for me on Ibrance/ Letrazole/ Xgeva. I don't post here a lot but read and like to pop in every once in a while in hope of giving some encouragement.
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Woohoo Lynnwood !!!! 4 years !!!!! Good to hear from you. Where are your mets? Any organ involvement? Hoping for that long on the Ibrance Dance.
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Hi Candy, no organ involvement but mets to just about every bone in my body.
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Lynnwood---Sorry for the widespread bone mets, but woohoo still for the 4 years stable. Praying for many more years for you.
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Congrats, Lynnwood- Four years is a great long run, hope you get to go for many more!!
Thanks to Bliss for pointing out a recent Nature paper showing that breast cancer mets have elevated glucocorticoid receptor (GR) levels, these are steroid hormones. I angst-ed about taking steroids when I went thru chemo, concerned that it was making the cancer cells resist the chemo (even as I was told my normal cells need it to survive), as there has been data indicating this is the case floating around for years- now we know those steroids might be super-strengthening the cancer cells to resist the chemo, it is just a problem inherent to using the non-targeted drug approach. Well perhaps now we can all benefit from GR antagonist drugs?!
Here is a synopsis of the paper: https://www.genengnews.com/news/breast-cancers-spr...
Immunotherapy combos cannot come soon enough!0 -
Cure-ious, ever since my friend who was covered up with malignant melanoma got a complete cure after immunotherapy (7 years now with no disease), I have believed that would be the answer for MBC. I know the diseases are very different but a girl's got to believe in something, right?!
I pray for researchers of all kinds but I pray even harder for those in immunotherapy. My oncologist is older and a former researcher. He is a big believer in immunotherapy as he has seen so many patients do well. I think his long term plan is to possibly use one of those already approved drugs on me. He never worries about whether insurance will pay but goes with what he believes in. When my daughter went through chemo there was an Avastin trial for Triple Negative BC. She didn't qualify but he gave her $50,000 of the drug for which he was not reimbursed.
In the meantime, I keep a close watch on your posts so I can pass them on to him! Thanks for your efforts to keep us informed.
Love from PatGMc
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Lynnwood, we never get tired of hearing your wonderful updates! Congratulations to you and all those healed bones!! Keep on dancin'!
Love from PatGMc
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Lynnwood: Congratulations. I have wondered for some time how long folks have stayed on Ibrance. I have bone mets only and have been on Xgeva since I was diagnosed 5-1/2 years ago. My bone scans have vastly improved over the years. I started out on Xgeva monthly but get the shots every three months now. Just passing on my experience.
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Wandering, at what point did you switch to quarterly XGeva? I've been getting the shots monthly for two and a half years. I started it, Ibrance and Arimidex all around the same time so I don't know what made such a remarkable difference in my widespread bone mets so quickly but I secretly give lots of credit to the XGeva. I don't know why!
Just a little aside of how God can pave the way for you: I had TRAMflap breast reconstruction in 1996 which left me with numbness all across my tummy. I get the XGeva shots there, of course, and don't feel a thing! God is good and He thinks ahead!
Love from PatGMc
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Hey guys, it's been a while since I popped in... I hope everybody is hanging in there. I've been on the I/L/Z combination since October now. The great news is it is seeming to work really well! My original tumor was over 20 cm (I could feel it sitting under my ribs...very anxiety inducing) and they are estimating it is now only about 3 cm!!!! 😀Which is outstanding and so exciting for me.
I do have a question, does anybody else get the flu like symptoms as a side effect? It doesn't happen every cycle, but maybe every other cycle. I get a very low grade fever, a sore throat and a runny nose. Today adding in a headache for fun 🙄. It usually only lasts a few days and I'm never positive for strep or flu. Does anybody else experience this? My neutrophil count was over a 1000 at my last visit.
Sending peace and love, Jenna
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Bubblebeard, I don't have those side effects but I wanted to tell you I'm doing a little dance over your fantastic response to Ibrance! Congratulations on being a Super Star!! I can't imagine how uncomfortable a 20cm tumor would be.
I did have a sore throat at times back when I also had mouth sores. Eating natural yogurt cured all of that.
About that headache.....do you take anti-nausea meds like Zofran? That could be the cause of your headache.
Love from PatGMc
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