Ibrance (Palbociclib)
Comments
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Candy - How early on did you get reduced to 100, then 75? I’m curious because you have been onIbrance for awhile now (I forget how many cycles).
I read a recent article on Practice Update regarding shorter PFS for those receiving <80 RDI in the beginning. That’s me. For my first 4 months, my RDI was 56%. This article said bigger populations need to be studied so there’s that. So I’m curious to calculate your RDI for the first 12 weeks. Obviously, you are doing great and I’d like to follow in your footsteps.
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RK2020,
What is RDI? The only thing I know it could refer to is dietary intake? Are you talking about the level of the drug that's absorbed? And how do you test for that?
Thanks!
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RK2020- I too question what RDI is. Never heard of that. And was never tested that I know (and I keep up on all the testing we do on me).
I started on 125mg of Ibrance. I was totally new at all this and did not even know of BCO at that time. I did not know anyone with MBC. My ANC's went as low as 400 (0.4). Looking back I think my MO at the time (he later moved from our area) must not have had much experience with Ibrance. He freaked out. We stopped the Ibrance and when we restarted we skipped the 100mg and went directly to 75mg--MO's decision. I have been on 75mg since. I am now starting cycle 34.
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My wife has been on 75mg ibrance for three years now. She couldn't tolerate the higher dosages. I prefer to shrug off any suggestions that it was a negative thing, and tell myself its more individual how a person responds, than worrying about how it affected a group of 100. Plus, if there isn't anything you can do about it because 100 mg was too suppressive, then why fret the decision to reduce the dosage?
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Candy, so happy to hear that the new schedule works! I will bring that up with the MO for consideration as well if my ANC continues to be low. I am on my week break and will see how things go next Monday.
Stay strong and well everyone!
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candy and BevJen - No test necessary. It should be a simple calculation. 125 mg x 21 days = 2625 RDI per 30 day cycle. The article admitted that the sampling was too small but significant enough to warrant more investigation.
Husband11 - No fretting. It was my decision to go down to 75 vs moving to Verzenio. Now that I’ve made the decision, I’m simply curious if Candy is an outlier to the median quoted in the article. One that I can look to as an example of hope. I thought she might be. In case you haven’t noticed, women with MBC sometimes find comfort inexamples that have beat the stats. And don’t tell me how to feel. I’M the one with this disease. Thank you.
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Thank you - it's just a relief to hear that the pain might not be constant and forever!
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Understood, RK2020, I hope you find some encouragement in that my wife has done better than average, despite having a reduced dose of 75 mg for 3 years.
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RK2020- Can you find that article and post a link? I had never heard of calculating that way. Not that it is wrong, just would like to read more about it. Learn more. And I can look back at my records and calculate the RDI pretty easily, I think. Like I said, I had no input in the decision to move to 75mg and bypass the 100mg. I just did what my MO said to do-- stop Ibrance, do repeat blood tests, and restart at the 75mg dose. I was shell shocked when I found out I had MBC-- no cancer in our family history. Did not know of BCO and did not do research at first. I joined BCO and starting researching AFTER I was diagnosed. Wow, I have learned a lot in the last 3 years.
I do think that the mg-- 125, 100, or 75-- doesn't seem to be the deal breaker, at least for me. I have visceral involvement with the liver mets (and large at 8cm on diagnosis) and have been stable for 3 years on the 75mg dosing. So Ibrance has been successful for me. But others seem to have progression much quicker with Ibrance. Why??? I guess all our cancers have things specific to our bodies.
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I have the same situation as Candy, only had one cycle of 125 and immediately placed down on 75 from the next cycle on. This is only the third time in 15 cycles I’ve had to wait an extra week. I placed a call to the nurse to ask if I can try the 5/2 schedule like Candy. We shall see.
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RDI means dose intensity reduction
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RK2020 and others- I logged out but then got to thinking. Our bodies are different but so is our stories. I was diagnosed with what we thought was Stage 2 in July 2017. The next month, August, I had 2 doses of Adriamycin and Cytoxan IV chemo. In Sept we found the liver and then the bone mets. The Sept scan said 8cm tumor on liver. We stopped the IV chemo. I did not know anything about cancer, like I said. I thought "I am dying. They do not want to waste expensive chemo on me. That is why they are stopping the chemo". We started Ibrance 125mg in Nov. with the Letrozole and Lupron. So..... I had some chemo in my system when I started the Ibrance, right? So that would change the thought about the RDI, right? How long did the IV chemo stay in my system? Did it influence things? I know the chemo has not been still working all this time, but maybe it gave me an advantage. ????? This is too much for my simple mind to think about. But food for thought. So, maybe don't compare me to yourself and your situation. Just sayin.
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Husband - That's great that your wife has been on 75 long term. I was specifically interested in the dosage in the first 12 weeks.
Candy - PracticeUpdate had a similar article to this one about a week ago. There are so many variables that play a role in our success rate on Ibrance. I know this is a small sampling and no one has a crystal ball. You and I have some similarities in our MBC dx but also some differences, nonetheless I was curious. Unfortunately for me, my bone marrow has been compromised by a large femur tumor. Have you ever had genomic testing done?
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RK2020- I did have genomic testing. When diagnosed with the Stage 4, they sent off for Foundation One studies on the liver biopsy specimen. Yet again, I had no idea about all this back then.
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KBL - Good to know. If I assume that you took 125 for 14 days and then took 14 days to recover before starting 75, that would also put you below the RDI of 80%. And here you are 15 cycles in! Another success story.
Candy - My MO said that my CDKN2A mutation can give me a leg up on Ibrance being successful. 👍 But then again, my femur bone marrow issue is working against me. That makes it harder for my blood to recover. 👎 So far, my TM is heading in the right direction 👍 but my TM moves very little, even when things are bad. 👎 I have a PET scan coming up soon and that will be the better indicator if my current increasing pain is from progressing cancer or just existing bone damage/bone recovery pain. I’m optimistic that my pain isn’t indicative of progression. You are correct there are some big differences between you and I. I had 8 rounds of chemo and spent 3 years on Tamoxifen. The cancer progressed while I was on Tamoxifen and here I am - MBC. While on Tamoxifen I went into menopause. We are both grade 3 but I have no visceral findings. And every body is different. Heck, look at how differently each of us react to Ibrance. Some say it’s the easiest drug they’ve taken and they feel like the women on the commercial. Others, like me, get beat down by 125 and have numerous side effects beyond neutropenia. 🤷♂️
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RK2020,
Yes, we are all different and our bodies react differently, that's for sure.
I did get a chuckle out of your reference to those annoying commercials, though. Drives me crazy.
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Just wondering has anyone had a Covid 19 test while on I/L? I work at several medical outpatient clinics. Yesterday the staff was informed one of the nurses tested positive. Hence the entire staff needs to be tested. Now every little symptom I have in the last 2 weeks is it Covid or from my treatment. Talk about being psychosomatic, lol. In any rate I hope to find out my results tomorrow. After having MBC, the nasal swab was not that bad, where several of the staff I work with made such a big deal. Yes we respond differently as referenced in above remarks, somehow or another MBC gives a different perspective, at least for me.
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Tinkerbell,
I had to have a Covid test before a recent endoscopy/colonscopy. I agree -- the nasal swab was not that bad at all. The place where I was tested we had to do it ourselves, with a nurse watching. They had mirrors in the room were we tested, so we could see that we got the swab far enough up, and the nurse checked, too.
But I'm with you. For the three days I had to wait, I had everything going on that I thought could have been Covid. Came back negative, though, for which I was grateful.
But yes, you have a different perspective when you have MBC, for sure.
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when I diagnosed BC and soon after MBC, I did not know anything, a very simple term was new to me, I did not know this forum either. I started with 125 mg, 4th cycle was disaster, I couldn’t tolerate life and did not know those annoying things in me were SE! I learned from here and told my MO that I could not breath etc. then he suggested a lower dosage. First I was not completely sure if ibrance worked because of progressions in my t spine. I learned from here a lot, ever experience every story bring me hope, so now I have this option (5/2) in my shelf and I will use it once it is necessary. I hope I can stay with ibrance long enough.
Thanks everyone for sharing your experience, keep sharing. 🙏
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RK2020, my wife did just one cycle on the highest dosage of ibrance, one cycle on the medium dose, then switched to 75 mg. So in total she did just 8 weeks on the higher dosages before switching to 75mg for 3 years now.
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RK2020--- When is your PET? In your pocket for the scan. I agree about the commercials--- I certainly do not feel as well as those women seem to. LOL.
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BevJen: Glad to know another person had the Covid 19 test. I can honestly say my scan anxiety is a lot more then waiting for the results of the Covid 19 test. However I want to know my results ASAP with Covid but with my scans it's a I want to know but don't at the same time. I don't foresee me ever looking forward to scan day..
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Tinkerbell,
I hear you. Every scan is anxiety provoking and a new adventure.
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Candy- I have a PET on 10/1 and asked for the results prior to my 10/5 MO visit. We'll see if that happens. For whatever reason my Wisconsin hospital doesn't post PET results on the patient portal. This is my last appointment in Wisconsin before I head south to Florida for 7 or 8 months. Like I said, I'm feeling pretty optimistic but you never know 🤞🏻
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RK2020, was on the 125 for the full cycle, 21 days. Then, if I'm not mistaken, I think I had to be off two weeks before I recovered.
I had a COVID test as well while in I/L before an endoscopy. As soon as she pulled the swab out, I started sneezing. Lol. Thank goodness I had a mask on so as not to spit everywhere.
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KBL: You made me laugh re your sneezing after the Covid 19 test. Still waiting for my results. I was informed the results take 24-48 hrs. No wonder this is frustrating for folks waiting as well as potentially spreading Covid, by no fault of their own in so many cases. So I work from home today. Thankfully I’m nearing the end of my 13th I/L cycle.
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Tinkerbell, I was trying to hold them in too, so it sounded pretty weird. Lol
My state has just gone to level 3. Everyone back to work and full capacity at restaurants. No more masks needed.
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Question....my creatinine levels have slowly crept up....this affects your kidneys. Has any one else had this happen to them. It is part of the blood work panel. Several months ago it was higher than usual and I saw a kidney Dr. He changed my blood pressure medicine. It went down for a few months and now the Bun and creatinine are higher after one week. Had to repeat blood work from last week because sodium level was high. Totally confused and worried.0
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Airlinegal,
My eGFR seems to have gone down on this drug -- but it's bouncing around a lot. My creatinine and bun numbers are still normal. But I think it's worth keeping an eye on. I am also on BP meds, and asked my primary care doc about that, but she didn't seem to think it was that. I plan to revisit with her.
I have noticed that if I drink a bottle of water prior to having my blood drawn (my draws are usually in the morning) that my numbers look better, but I have no idea what that means.
Sadiesservant, who I believe is on Xeloda, also has had issues with her numbers. I can't remember if it was while she's been on Xeloda, or if she had been on Ibrance prior.
I mentioned the numbers on my eGFR to my MO. She hadn't even noticed, and didn't react much. But, like you, this concerns me a lot.
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My PCP, Endo, Cardio, and MO watch my numbers. They bounce around from lab draw to lab draw. I have stage 3 kidney disease. Nobody seems overly concerned as long as they don’t go up, and stay up. I am on a diuretic with potassium, every one of them tell me to watch my salt intake. PCP said if they start staying up, I get to add another med to my handful.
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