Ibrance (Palbociclib)
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Good to hear from you Faith !!!!! Glad you are still with us and post periodically. Join the chatter anytime. I think it is wonderful you are doing so well, progression wise, with only Letrozole. Yes, Yes, Yes to the side effects. I think mine are from the Letrozole also, but with using both I and L who knows which issue is from what med. I too have anxiety/depression at times but I too don't want to add another med and those potential side effects to the mix. Strange how cancer does - some long timers, some with minimal treatments, and some with TONS of treatments under their belt, and some like Gracie with mets 2 years and on hospice. We have lost so many just since I have been posting here. I wish we would never have to lose another one of us to this crazy, awful disease. I wish they could understand why some have good success and bottle that for us all. The unknown future is what bothers me. Will I be a 'lucky' one or one that goes fast? I have been on this crazy roller coaster ride since Sept 2017- almost 2 years. But I am on my first line treatment so I guess I am doing well. So many right now having progression- Grannax, Gumdoctor, ShetlandPony. I pray for everyone on BCO daily.
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IL11 & FIGF Proteins drive metastasis
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Another way to fight resistance to Palbociclib. https://www.thepharmaletter.com/article/crizotinib-and-palbociclib-combo-could-overcome-treatment-resistance Looks like since both the drugs in the combination are already FDA approved it might be easy to get into clinical trials.
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Cure-ious, good for you on the Celebrex! A friend of mine who was diagnosed with a Stage II very aggressive BC has taken high doses of Celebrex for fifteen+ years and has never had a recurrence. Her husband worked for the manufacturer and they were doing trials at the time so he put her on it. My friend, Colleen, who had BC liver and bone mets back then didn't qualify for the trial so we decided to eliminate the middle man and get her the Celebrex (don't ask!). Unfortunately she couldn't tolerate the high doses and had to stop but we had fun overcoming the system for a little while!
Hi, Faith! It's always good to see you!
>About the Letrozole: Many people tolerate it well but there are some who don't. I was one of them and flat-out quit for a couple of years. With letrozole I had such trouble with the ligaments in one leg that I was falling, the bottoms of my feet hurt to touch the floor and the ligaments in one hand were getting worse by the day. I actually retired from a job I loved because of it. After 6 weeks off none of those problems remained! When the bone mets showed up I agreed to take Arimidex/Ibrance/XGeva and added a supplement of Turmeric and I've done fine. I haven't had to take any pain medicines in these 3 years. (I order MegaFood Turmeric, the one for joints, from Amazon.)
>About taking hormone therapy by itself for mets: I have a friend with bone mets who has been on Faslodex alone for around 8 years and she remains NED.
>If your quality of life is distressingly low, I'm all for backing off of any med for a time to see how you do. You can always jump back in if you have progression. Your doctor may disagree with your decision but this is your life. The quality of your days matters! Who knows but what some of us could go for long periods with no progression?! I plan to continue to test that out from time to time...call me crazy!
>About Ibrance dosing: I've told it here over and over but I'll say it again, my oncologist doesn't prescribe 125mg. Everyone starts at 100mg. He was a researcher once and understands that just because a trial reported use of the high dose doesn't mean he has to use it. He is committed to giving his patients the highest quality of life possible for which I am grateful. I love that he is 80 years old and stopped following all the rules long ago! He and I are a match made in Heaven.
Here's to breaking the rules on this lovely Tuesday given to each of us by a loving God!
Love from PatGMc
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Hi 42young, I’m wondering what side effects are driving you towards taking a hiatus.
I’m on my 2nd cylcle of Ibrance and Fulvestrant and I am noticing the the se’s are more intense this round and I’m only 8 days in! Last month it was nausea but this time it’s more about vomiting and constipation nearly became an obstruction. I’m sure the periods of weakness and fatigue will continue but hope it doesn’t take up too many full days.
Are these the types of issues that are driving your decision?
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Ginny, may I recommend lemon-infused prunes or Raisin Bran cereal for the constipation. Miralax works but I only need it if I forget to eat these things and/or lots of fresh fruit.
Nausea is a common side effect for me and I take half of the lowest dose of Phenergan (sp?) some nights for that and I actually get relief for most of the next day. If i'm going someplace during the day I take the lowest dose of Zofran. It makes me feel like there's some space between me and the world and I get a slight headache later but I go with it anyway.
Indigestion is my most annoying side effect after fatigue and I take OTC Pepcid AC along with Ibrance with dinner. Tums also give me relief at bedtime and keep me from having to take calcium supplements. Peppermint works best and I break them in half.
About the vomiting: I've found I do better if I don't fight it and just go ahead and vomit when the first wave comes. I tend to feel fine afterwards and can even vomit, brush my teeth and go on to eat lunch immediately following. It's just weird.
Anyway, I've spent about 34 months dancing with Ibrance. I pray you do well for a very long time! Just roll with it!
Love from PatGMc
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Good evening dancers
Does anyone know anything about Medicare part b?
I have insurance from my husbands retirement. Do I have to take the partB and pay 134 a month? Is there any benefit for doing this? Will it take care of our co pays?
Tanya
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Ginny, i just finished 6th cycle & SE's are very tolerable for me except for the low blood counts. Since i'm stable I'm thinking about take a break in between (not stop it completely) to improve my blood counts & lower the toxicity. I'm not sure yet until my next scan.
Pat, thanks for your comments. I feel hopeful every time reading your posts.
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Tanya, as long as you are covered under your husband's plan, I think you are ok. I only had Part A for a couple of years (retired with disability). But once he retires and the insurance stops you need to get the Part B. I just this month am switching over to Part B because my husband is retiring at the end of August. Fortunately for me our insurance company has a deal with Medicare and my Part B is the same insurance. Hopefully it will all work. My advice to you is to talk with you husband's company (if it is big enough and has someone in a benefits department) and then go in to the Social Security office and make sure. I did that and it was actually an easy experience. I only waited 30 minutes and the clerk was very nice and polite. You have to go in to get the Part B anyways as they won't let you do it online. I have no idea why. Good luck.
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into the light
Thanks. My husband is retired and I did speak to someone from Medicare and so did my husband. He pays for the insurance from his retirement already. I’ll call his insurance co in the morning.
Tanya
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Ginny, Yes I found the 2nd round of Ibrance I saw more side effects but now I am almost done with bottle 3 and they are getting better. For consitpation I highly recommend Magnesium Oxide..Not CITRATE...citrate is normally the better one but not for constipation. Take 3 tablets of the Oxide and you will go! I have the same issue.
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Cureious, I’m interested in Celebrex and wanted to ask if you’ve scanned since starting it. Was there further progression? I hope the answer is no! Also, how is the Celebrex with addressing arthritis pain, etc...
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When my husband and I started the Medicare adventure we went to an independent consultant who advised us on what we needed to minimize our out-of-pocket medical expenses. He made recommendations based on his other clients' success with certain companies.
We signed up for Part B with Mutual of Omaha and
Part D with United Healthcare.
Together my husband and I pay about $300 a month for all the coverage. It's pricey but well worth it considering my care averages about $20,000 a month. (Isn't that mind-boggling?!)
It's been 4 years and we haven't been billed for anything on major medical as Medicare and M of O have covered everything. My understanding is that without the Part B we would be billed 20% of everything.
With Part D for pharmaceuticals outside the cancer clinic, we have a co-pay which consists of $7 monthly for the Arimidex and a couple of dollars here and there for anti-nausea drugs. If I didn't get the co-pay assistance and/or free Ibrance from Pfizer, there would be a pretty hefty co-pay but so far, so good.
Hope this helps!
Thank you, 42young!
Love from PatGMc
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Hi Faith!! Was excited to hear from you!!!
Jenn-I just checked and I’m taking 200 mg once daily-I think that is a low dose! No SEs from that but it helps A Lot with my knees-seriously without it I’m going around thinking I might need a knee replacement, and with it, I’m like-Didnt there used to be a problem with my knees?!
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Jenn-I had progression in two places-one was a messy area on my hip that was slowly heating up with each scan ( “smoldering”, they called it) and the other a bright new spot in my spine that came outta nowhere-I went and did an MRI to confirm ( it was more accurate about where the spine spot was ) last December. I hoped the Radiation might synergize with the Ibrance, given that both can stimulate immune system to go hunt cancer cells. Started Celebrex in March in hopes of further boosting immune activity-anyway,whether or not the Celebrex is adding anything, I have had two clean scans since the rads, so I think it was worth it-its given me six good months so far!!
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Faith-I was excited by your story-what if we could ditch Ibrance after we get stable and save it for later treatments?! I wish they could track these cells using the CTC assay and better and figure this out!!
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Cure-ious, I think we're going to have to prayerfully make those decisions ourselves. Our oncologists are constrained by evidence-based medicine and unfortunately, by their malpractice insurance, right? Mine did say if I have any substantial progression we can use something else for a while and then revisit Ibrance. I do look forward to the day a blood test will let us know what's up.
Love from PatGMc
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Regarding Fatigue:
I've been blaming my fatigue on Ibrance but now that I think back to my time on letrozole alone, I was pretty exhausted. Because I had that speech to do this month, I took an extra week off. The nausea and indigestion eased dramatically in the second week off but not the fatigue. I'm wondering if good old Arimidex is not the culprit. Hmmmm
Not that I'm stopping it.
Love from PatGMc
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Hi all - just catching up. So nice to see you Faith! I hope you are able to mix things up and get those SEs under control.
So a couple comments on some of these topics.
Celebrex - I took it when I was first dx. 200mg for about a decade. There was early evidence then of the Cox-2/cancer connection so I went for it. Maybe it helped keep me progression free for 15 years? When all the studies came out about the heart problems, I stopped taking it. I had AC and Herceptin so I was already a bit worried about my heart. My MO told me to take a baby aspirin years ago and I still do so every day. It’s probably been 15 years at least. Maybe that has helped too?
As far as Ibuprofen and Ibrance interference - I have not gotten that feedback from my speciality pharmacist and I asked because I take Aleve occasionally for pain - headaches and what not. They said it is no issue.
Re: hormonals alone: I have a friend who was dx with MBC at the same time as me. She had just finished her early stage treatment a year prior when they found that a spot on her spine had shrunk (they saw it during staging but didn’t think originally it was BC. So her MO said let’s treat your BC with chemo and allnow and watch it). Well, it shrunk when she finished chemo and had been on tamoxifen for several months. so they did a biopsy and yes, it was BC. So she was actually de nova but didn’t know it. In any case, tamoxifen alone has since gotten her to NED for at least 9 months now so they are rolling with that. Just another case study of 1!
Love to all,
Lauren
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Lauren, I'm a huge believer in what aspirin can do. The long term nurses study we've read about through the decades discovered something when they looked at women who had been taking low dose aspirin for years. The breast cancer survivors on it had a 70% lower risk of dying than the ones who didn't and a big difference in recurrence rate. I don't think I'm making sense with this so I'll try to find the study and post it.
I'm also going to look for the study on Peanut M&Ms because I just ate some!
(Edit: I can't find the study and I'm sure it's because I read it around 2011. My brain is too tired to go looking for it so I'm just going to continue to trust my memory.....and I'm going to take another aspirin!)
Love from PatGMc
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Cure-ious, I just sent my oncologist's nurse an email asking for a Celebrex 200mg prescription. Hopefully, I'll be joining you by Thursday!
Thanks and Love from PatGMc
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Pat-I-Surely your friend benefitted from taking the strong Celebrex all those years!! Cancer loves inflammatiion!
Also the recommendation to take NSAID if you have PI3K mutant cancers came out of a retrospective analysis of a big study on head & neck and the got a big overall survival advantage-cane out with the recommendation that anyone with a PI3K mutant cancer needs to get a daily NDAID-I don’t know if I have some cells with that mutation but it’s so common in MBC, and cancers are heterogeneous so I’m sure there are som
You are doing great, too!!!!
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Hi again everyone, thanks to so many of you who welcomed me back. I don’t post much since I’m not on Ibrance but occasionally think I might add to the conversation and ask a question of my own.
BevJen, did you actually say you were on letrozole alone for 13 years while being stage 4? That would be fantastic if that’s true. Gives me and all of us lots of hope. My MO did tell me that MBC was often treated with just letrozole before Ibrance came along.
Jaycee, thanks for sharing your medications for anxiety and depression. I’m going to ask my MO or maybe my PCP about them, but I hate to add another pill, since like you I have lots of GI issues. However, I also hate how I feel most days, there is rarely a day I feel good. I love all your posts. I think my brain thinks like yours, I’m a numbers person also and we like to cut to the chase.😉
I sure wish I could take Celebrex for the aches and pains but my stomach can’t handle much besides Tylenol. The nsaids raise my BP but I do take one on occasion and my MO approves it. I’m also taking Claritin daily but wonder if I should take it after breakfast instead of before on an empty stomach. I’m getting really tired of playing detective with these meds to see what works and what doesn’t and what upsets my stomach.
Curious, it would be great if you could take a break from lbrance and save it for later. In my case, my MO believes that my cancer is very slow growing since it took about 25 years to rear its ugly head again. That’s the reason we are doing this.
Love and prayers to all,
Faith (in the future).
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Faith, now that you're back we're not letting you go again! We'll expect to hear from you regularly. None of us are here just because of Ibrance; it's because we found kindred spirits in this little corner of the Internet and you're one of us!
Please, don't anyone leave because you've stopped a drug. Let's all stick together and share what happens next. And who knows, we all may come back around to Ibrance in some combination later!
Love from PatGMc
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hello my friends!
Just checking in, it’s been a little while since I’ve posted. I was down the shore with some friends for some much needed RnR. Came back last night and had my monthly MO appt this morning.
Newest update is that I have been struggling with some serious foot pain (both feet) which is appearing like plantar fasciitis. I believe it is due to the letrozole most likely. So we are going to do a little experiment and take a 2 week break off both letrozole and Ibrance to see if my feet feel any better. If they don’t, then I’ll treat as plantar fasciitis. And I’ll treat it as that anyway since that makes the most sense...so I’m expecting for this to pass as with all the other random aches and pains and issues.
The thing that kinda annoyed me, and I love my MO, was that he seemed completely convinced that the foot pain has nothing to do with the meds. So bizarre to me that he would think that. Does anyone else have any input?
The other thing that happened was that the Fellow who was first at my MOs office, when I was first diagnosed back in March of 2017, had gone on maternity leave. She’s now back and we got to see one another after over 2 years of treatment. It was so nice to see her and have her see me and see how much better I am looking than when I came in so sick back in 2017. It was a wonderful affirmation that so far so good!! Treatments are working thank goodness!
Hope everyone is feeling as well as can be!
Hugs to all!
Philly
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Philly -- re plantar fasciitis -- I had severe (and I mean severe) tendonitis (in my ankles) from being on letrozole. I also had knee problems, also, I believe, from the letrozole. After a lot of complaining, my MO did say that tendonitis can come from AIs. It was pretty miserable.
Faith -- yes, I was on letrozole from 2006 (when I had a single site metastasis to my cervix) until May 2019 when I was diagnosed with metastasis again. At the time I was put on it, docs were starting to use faslodex, but there was no Ibrance to my knowledge at that time. Because I had no issues all the way along with letrozole, my MO just kept me on it.
Good luck to both of you.
Bev
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thanks Bev! Helpful to hear I am not alone!! Sorry you’ve been in so much discomfort too! Hopefully the Faslodex is not causing similar pains
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Philly, I described my foot pain to my NP last week as a dull plantar fasciitis when I first get out of bed and she said, that’s the Letrozole. Not sure if that’s the type of pain you have but at least someone thinks foot pain and Letrozole are related
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Rosie that sounds about right!
My feet on the bottoms in the sort of middle towards the heels really hurt especially when I first get out of bed and first stand up from sitting down and start walking. It’s the worst in the middle of the night when I get up to use the bathroom and in the morning when I first wake up. Tender to the touch with some pressure and it burned very badly when I had my feet massaged last week.
Ouch
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Hi All -
Some skimming...checking in on you...
Had my port put in then chemo last week. Round 2 is tomorrow. Abraxane/Carboplating. Mild side effects so far, neuropathy and mild nausea. More fatigue...no surprise.
I had my Farewell to Hair Party today with 60 people, pizza, cake and live Facebook video.
Absolutely drained now. Can't sleep.
Army still has not made a decision about kicking me out on my birthday 11 August.
Rough days and njghts right now...
Miss You All --
Gumdoctor
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