Ibrance (Palbociclib)
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Piggy, thanks for sharing the good news, I think it gives us all more hope and holiday cheer !
Another answered prayer......
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Okay, now I am really confused...could be my chemo brain as I am nearing the end of chemo. I take atorvastatin and the plan is that when I get done with chemo and radiation that I will go on Ibrance. So, do I need to be talking to my doctor about getting off of the atorvastatin now and what medicine to replace it with?
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Sondra...thanks for your reply. I am concerned too. 20 minutes was way too long for me. Let me know what your MO says and I will let you know what the cardiologist says.
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SondraF, I’m pretty sure I wasn’t oligo - my first PET report said “numerous lytic snd sclerotic lesions throughout the visualized skeleton”. There were hotspots in a few places in the spine, sacrum and iliac bones. Took about 6 months for them to completely lose FDG uptake. The axillary nodes took nearly a year to resolve.
There’s hope, and my doctor is wonderful about bringing it around. He mentioned how excited he is about the newest oral SERDs, which supposedly work better than fulvestrant, and also mentioned that oral CDK7 trials are getting ready to open in the US, and should be a good option down the road.
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Congrats Piggy!! I would take it as early Christmas present. Have you had any primary tumor surgery or any local treatment to your mets? I wonder if you have done any complimentary therapies or adjust your diets etc...to get this good result? I just got clean scans, but still living in worries that I have not done enough to maintain my NED status.
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42young, I am definitely taking it as an early Christmas present. It’s the only thing I really wished for.
I haven’t had any local treatments (based on the whole “horse out of the barn” theory). This is the first time in two years that my MO expressed any inclination to do local treatments in the event of a “localized” progression.
As far as diets, I eat anything I want, as the extra 30 pounds I’ve “acquired” since the diagnosis can prove. I try to get fruits and vegetables in every day, and I go through good eating spells, but food is one of my biggest pleasures in life and it’s hard to give it up. I don’t exercise as often as I should, especially when school and work get busy. I take baby aspirin and loratadine every day based on the human studies that showed improved survival in breast cancer patients and fish oil, magnesium and calcium with vitamin D to keep the bones strong and lessen letrozole pains. I do sometimes wonder if I’m doing enough, especially diet and exercise wise-something I can put on my New Year resolutions list. But I think staying NEAD and ultimately staying alive comes down 80% to tumor biology and the rest to scientists coming up with new treatments fast enough and doctors staying on top of things, thinking creatively and looking out for us. Absent those kinds of doctors, self-advocating probably makes a difference as well. It’s certainly not a “merit-based” disease, otherwise Zarovkawould still be with us...
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It's so reassuring to see the progress that so many Ibrance dancers are having (including my wife who is on Cycle #7).
I have a question/concern about COBRA insurance though. My wife is retiring at the end of the month. Her company has indicated she'll receive her COBRA paperwork 2-3 weeks AFTER her last day and that it typically takes 4-6 weeks for it to be processed and her effective date will be retroactive to January 1. In the meantime of course, she'll need 2 cycles of Ibrance. Her benefits folks have indicated she'll probably have to pay out of pocket and then get reimbursed. This sounds absolutely crazy to me but I have heard independent verification of this procedure from others who have gone through the COBRA process.
Have any of the Ibrance dancers gone through COBRA? Does any of this sound right to you? I have no idea what her specialty pharmacy may charge us for Ibrance, but I suspect it could be many thousands of dollars. Even if we pay it, I'm a little fearful that her insurance will only pay a portion of that and NOT the entire amount we are charged. Any insight would be appreciated. Thanks in advance.
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Great news Piggy! Enjoy the Holidays.
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BLMike,
Jaycee has a lot of information on what to do if your insurance doesn't cover the cost of Ibrance. I don't think she minds PMs.
Pfizer picks up the cost of my copay. I applied for that when I first started.
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Thanks Simone80. I sent Jaycee a PM.
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Piggy that is indeed the best news.Well done!
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Piggy, I never heard of the baby aspirin/loratadine connection to better breast cancer survival.
Mike, I don't have any Cobra answers, but I feel for you and the insurance thing, Mine was quite jumbled up this year and I found it stressful. If your income is low enough, you can qualify for assistance even on Cobra I believe, and income levels are pretty generous. Best wishes getting that sorted out. It may take time, but eventually it gets figured out.
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Piggy, I am thrilled for you getting such fab results. Its beginning to feel a lot like Christmas..
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Congrats Piggy! What great news to start the holidays. Thanks for bringing us more hope!
I have suffered from strep throat the last few days. For the first time in 2 years I had to delay the start of my cycle by almost 2 weeks. MO says it shouldn’t effect anything. Maybe my body needs a break anyways. It’s nice to feel “normal” for a while and not be bound to having to take the meds.Karen, welcome to the board. Friends here have been amazing to me. Side effects are definitely manageable. I had many spots in my lung 2 years ago and much have resolved since. Best of luck to you on the treatment
Wishing you all the very best this holiday season.
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Thanks Piggy. I hope we all will get long time on Ibrance!!
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thanks thereishope, I’ve actually been around this board for quite a while, just don’t post very often
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thereishope - seriously, the worst I have ever felt as an adult was when I got strep throat about ten years ago. Crying tears of pain level. It was god awful and so much more enhanced than when Id had it as a kid. I hope you feel better soon - at least you can get through it before the holidays right?
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Great news, Piggy!
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Piggy, that’s awesome to read Your MO’s outlook for you!
Airlinegal, you’ve been on I/L for quite a while. I hope your good cycles have outnumbered the bad ones, as far as energy? I’ve had some pretty tired afternoons but I’m trying not to put naps into my routine. There are days where I nod off on the couch anyway.
I’ve posted on another thread that I recently had a lumpectomy for my primary tumor and have a second consultation soon with an RO for possible radiation and liver treatment. Apparently there is some data showing benefit to removing the primary tumor but no data supporting long term benefit of localized treatment of mets (liver for me). (MO set up breast surgeon and RO consultations saying my tumor load is low and response to I/L is very good.). So, now I will be deciding on whether to go further with radiation (as follow up to lumpectomy) and/or liver treatment. I have a liver mri scheduled to give the RO updated info which hopefully will help. Maybe no surprise, but RO said definitely do rads and possible SBRT for liver. MO said be careful to know risks of radiation. If no liver procedure then don’t bother with risk of rads. Ugh, what to do! Right now I’m leaning toward just letting I/L do it’s job and hoping for a good run. I know the reality of metastatic disease but the possibility of halting some progression is hard to pass up.0 -
sondra, so true about the pain with strep throat. Although the woman in me said “if I can handle child birth, I can handle sore throat”. Lol. I was in pain for 4-5 days before giving in to getting a swab test and getting antibiotics. I felt better within a day. Sometimes it’s not worth trying to be a hero!
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Rosie,
SBRT is but one of the many localized liver treatments that you can explore. SBRT is done by a "regular" radiation oncologist. Some folks have posted in other threads of their success with it. However, you should also meet with an interventional radiologist to see what other options there may be for you -- SBRT is done over a series of days, but there are also "one shot" options such as microwave ablation, cryoablation, and other things like Y90 that others have used successfully (myself included -- microwave ablation).
For more information on these other techniques, I'd suggest reading through this thread:
https://community.breastcancer.org/forum/8/topics/...
Good luck.
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Thanks for your response, BevJen, and for your earlier one to me too. I’ll def go to the linked thread. I’ve been trying to learn more about the various procedures so maybe I’ve already been there? I’d like to ask you some questions if you’re there too.
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Very happy for you Piggy
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Thanks, ladies, you are the best. I hope we all get to hang around here for many years doing the Ibrance dance!
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piggy 👍🏽
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Quick question for you Ibrance dancers -- I know that people have posted about having nausea, but is anyone out there actually vomiting? I am in the middle of cycle 5 and took my pill a little bit late last evening (a while after dinner) and this morning I was not only nauseous but vomited for a good part of the day. I'm thinking that this might be a little virus (I'm in the middle of my cycle, and probably most vulnerable right now to these things) because I have a temp that's slightly over 99.
Thanks for any info.
Bev
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Bev, I am guessing a virus especially with a slight fever. I was told to go to ER with any fever over 100.4 so you should be ok, but err on the side of caution. There is a lot of junk going around. Stay hydrated!
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Thanks, IntoLight. I am watching that fever for sure. I do feel better than I did this morning.
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Yep BevJen, sounds like a virus. I personally have never vomited, or even been nauseous in any way like the original chemo on this regime.
Just keep checking temp.... hope you have a decent thermometer
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Cowgal, atorvastatin is still considered one of the best, and if it's working for you, there might not be a reason to switch. Just make sure your prescribing doctor knows about the enhancing effects of Ibrance and keeps a close watch (mine tests every 3 months) on your cholesterol levels. There is definitely a reason to reduce the dose - I went from 20mg a day to 20mg every other day (the fact that I still had 80 doses in a 90-dose bottle, combined with the half-life info, convinced my doc not to lower the dose itself). Having the extra day to flush it out of my system has done wonders - I am literally pain free, after not being able to walk at all without a cane, and my Advil use has gone from 6-8 caps a day to... I literally can't remember the last time I took any!
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