Ibrance (Palbociclib)
Comments
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Jen, Congrats on the good bone scan and moving on to cycle 51. I hope I get that much time on this combo.
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Jen, That's awesome that you're on cycle 51, for you and for everyone else hoping for that too!! Adding my wishes for a good CT too. Keep on truckin, as they used to say 😊
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Amazed by the ladies with years of the Ibrance behind them! Warriors!! I just finished cycle 2. Feel pretty good, better than cycle 1. I talked today to my onc about immune suppression with it and doing things and going places. He was quite specific that the Ibrance, while it lowers anc and wbc, does not cause problems with infection like iv chemo does. He said to use the good covid precautions that I have been and should be fine. Anyone else get that from their Dr or were told Ibrance effect is cause for caution? My anc lowest so far was .78. Im at 1.5 today end of 3d week.... he said worry if it goes below .5
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Jen, did you ever just ask them why they still use the barium stuff? My CT people haven't used that for YEARS. I just drink a certain amount of water. I Googled and found that different places do a huge variety of different things. Same as what was reported here. Strange. I'd just be curious. I do remember years ago a radiologist reading one of my Pet/CT's complaining that the CT part had no contrast. That was only mentioned once in the 10 Pet/CT's I've had. Just finishing cycle 52. HA!
Aviva, my MO agrees with yours.
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Jen - Congrats on scan results and cycle 51! I have a CT scan this week. I usually get the IV contrast only.
Aviva - Same as jaycee, my MO agrees with yours. The lowest I've had is 0.51. I'm still at 125 mg.
jaycee - Congrats on cycle 52!
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Aviva, I recently started cycle 3. My ANC is also a cause for concern. The day before I started my first cycle it was 1.62. I held off a week before cycle 2 when it dipped to .48. After a week off, it went to .65 so I started again. After cycle 2 it dropped to .44. A week's break brought it up to 1.15. We'll see how this cycle goes.
When I was having my Zometa infusion after cycle 2, I had two nurses come in and tell me that my ANC was really low (the .44) and that I was to be very careful about infections, exposing myself to germs, etc. Was told to wash my hands, don't touch my face and stay away from the pharmacy (that's where the sick people are).
I know that some people have their dose reduced or have their schedule changed. So far, I'm still on the 125 tablets with the 21 days on, 7 days off schedule. Time will tell, I guess...
Jen, ditto the congrats on cycle 51! Are you still on 125 with the 21.7 schedule?
Candy, at my last scan, they brought me a big bottle of water with my name on it and told me to drink it before the scan. I don't remember if I got the IV with that one, too. All these tests run together.
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Jen and Jaycee: Yippee, onto year 5!!!
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Yes, Jen and Jaycee,
You are so lucky for your longevity on these drugs! That's wonderful!!!!
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Jen and Jaycee, that’s so awesome. You give us hope. Congratulations.
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HI JEN....Do u have any side effects from LETROZOLE? Have been on FASLOWDEX now for 3 years,and the scar tissues are a problem .Any one else with this issue?
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Jen and Jaycee!!!
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Hooray for Jen and Jaycee! You continue to inspire us whether we've been at this one cycle, one year or four years!
Thank you for all the encouragement you bring to this dance!
For those of you just beginning, we look forward to celebrating your success!
Love from PatGMc
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Sunshine, I am still on the 125 dose. I’m lucky that my blood counts are strong but the fatigue is real. My MO maintains that the fatigue is not Ibrance related. We all know he’s wrong....
Ruthie, I have aching joints from the Letrozole and fatigue. When I first started it, my feet hurt so badly I had to hobble around every morning until it subsided. I love definetly heard about the scar tissue issue with long term Faslodex users. Is there a pill version of this in the works?
Jaycee, I have asked and was told it makes for a clearer picture, especially for the abdominal part of the CT. I wish they would just do water and then if it’s needed to repeat with the barium drink,
Aviva, I’ve been told the same by my doctor. This drug is a cell interrupter rather than chemo which blasts all fast growing cells.
Thanks everyone for celebrating with me. Bi know I’ve always taken incredible hope from the long timer Ibrance users. The fact that there are still people on it from the original trial is inspiring. Wishing us all a long ride
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Hey PatgMc I had jotted down on my notes that you have scans coming up this month. Correct? When?
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I had a friend ask me the other day how I was doing and I replied fine except for the fatigue from meds. He said everyone gets tired. I was speechless. What reply would you ladies have come back with? I think I'll just respond "good" going forward no matter how I'm doing.
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A friend asked me how I was doing. I said hanging in there. He was just dx with ALS, asked him how he was doing. He replied same. We both knew we were lying.
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Simone80, I don’t know if I would have had anything to come back with myself. No one understands like we do.
Moth just revived the SH*T people say thread, and I’ve been going through there seeing the things people say. Some make me laugh.I think we can all use a good laugh. I had never seen that thread, so I’ve got some catching up to do.
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Simone- I have a friend that says that exact thing. I like this friend, but it makes me want to choke him. He is one of those Energizer Bunny types. Clueless.
Well my ANC was 700 two weeks ago at beginning of cycle. New MO said to start Ibrance and repeat lab in 2 weeks---today. Well.... ANC now 500 and told to hold Ibrance 1 week, repeat lab, and she will decide next step. I am just not tolerating Ibrance anymore. I am not sick, but I worry I will catch something. I hope not Covid. And I worry that my time with Ibrance is coming to an end.
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Candy,
So sorry to hear about the ANC numbers -- are there any other irregularities in your labs that you can see? I think this is really weird. Hopefully your new MO can shed some light on all of this.
Hang in there. Thinking good thoughts for you.
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Jen and Jaycee 🥳 congratulations
Warriors and trailblazers
Tany
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Candy - thats not great for sure, however, is Ibrance really failing or are you failing Ibrance? Maybe its just time to put it 'in its box for later' like PatMc as she didn't want to develop resistance to it and did that other drug for a short time. Would the letrozole alone hold things at bay? At least there are a few more resources with the new onc than the old one.
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Question for group- I am going to talk with MO about changing Ibrance schedule, but if my counts stay low with intervention to schedule, does anyone know about research on using Letrozole/Lupron only? When I was first diagnosed, we started the CDK right off the bat. What if I drop the CDK and just do an AI. What is the stats for PFS with an AI alone?
I want to stay on a CDK since they are so successful with PFS stats, but I just do not know what my future holds. My scans (last one in May, next due in Sept) have been stable. But I am not tolerating the Ibrance anymore with my low WBC/ANC numbers.
Can anyone give me some links to some research on PFS for AI's alone?
I am looking at my options----1. Tweek Ibrance scheduling and see if numbers get better. 2. Change to another CDK (maybe Verzenio with stats of GI issues more, but neutropenia less). 3. Go to an AI alone.
Any thoughts/suggestions?
Also-- I have read on here that once Ibrance fails (not the case here exactly) that liver mets can explode. Any research on that?
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Candy, if tweaking the Ibrance schedule doesn't do the trick, what about trying Faslodex by itself until that next scan? Then perhaps you could add back the Ibrance? I only play a doctor here on my sofa but that kind of makes sense to me!
I have a PET/CT at the end of the month so we'll see how the I/F plan has worked for me! [I switched to a PARP inhibitor for 3 months. That was a bust so I had a circulating tumor test and the recommendation was Ibrance/Faslodex.]
Love to all of you from PatGMc
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Hey PatgMc. You mean Letrozole by itself until next scan? I am not on Faslodex. An Ibrance vacation, you mean? Good idea. Reset my system.
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Candy,
I think Pat may mean faslodex, which is a good thought. Grannax on the liver mets thread is on faslodex as a single agent treatment right now. Others have done so. Lots to toss around with your new MO.
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Candy, I don't remember if your ANC has come up when you've had an extra week off? If it has then I would vote for just making 2 weeks off your new routine. But of course I'm not a doctor either. I've had many extra weeks off and am stable also. Good luck. 🌺
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Candy, I still pop in and read but don’t post much anymore. I was on Ibrance/let. about 18 months and then stopped the Ibrance for a vacation and never went back to it. I’ve been on Letrozole alone for almost three years now and blood work this week shows everything still stable. There is research out there that shows Letrozole alone is effective for some years of PFS. Maybe you might just take a break from Ibrance for a short time to give your body a chance to recover. I think if you google Letrozole and PFS stats you will find the info you’re looking for
PatgMc, good to “see you” again. I’ll be praying that your scan is good and shows no problems. I hope Faslodex is treating you okay. I believe that will be my next treatment when the Letrozole fails.
Sending love and prayers to all of you.
Faith (in the future).
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Candy, I actually meant switch to Faslodex for a while but I realize your scan is coming up soon. I have a tried and true way to decide on the next treatment. I write down the pros and cons of my options, pray about them and go with what I have peace about the next morning. I promise myself I won't look back and have regrets. Faith is a good example of Letrozole alone.
Thank you for the prayers, Faith. There's no guessing what these scans will show but the discomfort in my sacrum has improved a lot. It seems many of my aches and pains were actually caused by the Arimidex as I have fewer of those with the Faslodex. I took advice from dancers here and have roller massaged the shot locations so no knots or aching there. I also get the shots while lying down in the cancer center recliner.....barely a twinge! I love all of you for teaching me the steps to this dance. I'm coming up on four years (off a bit for Lynparza and the plague) and I'm ready for the next four!!
I still hope all of you are finding something that brings you joy. I highly recommend a small kit of brushes, paints and a canvas! If you want to give it a try I'll send links to some affordable supplies. I'm finishing up a commissioned mixed media piece for one of our dancing sisters and it's filling my days with fun!
Love from PatGMc
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Candy,
I can’t recall what dose you’re on for Ibrance? If you’re not down to 75 yet, that would probably be my first approach.
Otherwise, I like what others are suggesting to take a break from Ibrance and stay on Letrozole alone. That has kept many people stable for years and was standard of care prior to the CDKs.
interesting to consider another CDK that is known to be easier on the ANC numbers, if you can get on top of the diahrea, that would be interesting to talk to your new MO about
I’m sorry that you are dealing with this.
Je
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Jensgotthis- I am on 75mg. I have been reading here and have some options:
1. Try Ibrance tweek--- on 5 days/ off 2 days. They are doing a clinical trial with that dosing at my new cancer center--- 3 1/2 years into a 5 year trial, not recruiting now, but my MO would try since the trial is being done at her facility.
2. Ask to change to Verzenio--- good on visceral disease and less percentage of neutropenia. I have some info from a BCO poster that PM'd me.
3. Letrozole/Lupron only for a bit.
I am going to talk with MO about all this soon.
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