Ibrance (Palbociclib)
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prairiesea- I have fought a low ANC all along with Ibrance. We started me on the 125mg dose. Then dropped me to the 75mg dose, bypassing the 100mg dose, early on. Last summer (summer of 2020) my new MO decided to try a new dosing regime. I take 75mg for 5 days and then off for 2 days. No week off. The 2 days off are my days off. So on 5/ off 2 continuous. It may have helped a smidge. You can look up info on that dosing. There was a clinical trial done for that on 5 days/ off 2 days dosing. I posted on here about it. It would have been back late summer/ fall of 2020. Maybe you can scroll back to that time and my posts. Or Google the Clinical trials. gov site and search for "Alternate dosing of palbociclib" and look up the results of the trial. We posted that here too. Would have been maybe last Dec.
Good luck and keep us informed.
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prairiesea- Found it. Post from November about the 5/2 dosing. I first posted about changing to that dosing in August, on page 769 of this Thread. Then Cure-ious posted this about the results of the clinical trial....
Nov 17, 2020 04:17PM - edited Nov 17, 2020 04:29PM by Cure-ious
SABCS Abstracts are online:https://www.sabcs.org/Portals/SABCS2016/2020%20SAB...
It's a slow slog reading through them, so many are not relevant to metastatic cancers. They do report the 5 day on, two day off schedule for Ibrance was just as effective as the 21 day on, 7 day off, schedule and was better tolerated in terms of lowered white cell counts.
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prairiesea - boy oh boy do I feel your pain. Your story is similar to mine. I even went so far as to call the doc running the 5/2 trial because when I was in need, the results hadn't been posted and I really wanted Ibrance to work for me. It sounds like your local onc is teaching you the hard way how to be your own advocate. Good luck. 🍀 ❤️🍀
Below is my story. it is long and boring but there is hope. Yesterday I started my 17th cycle.
125 for 14 days on / 14 off due to anc going even lower after 7 day break. My low point was 777.
Started 100 mg at 1354 but after 14 days on it was back down to 840.
Tried 100 again once anc recovered to 1270 but after 14 days it was back down to 910 and then after 7 day break 700. This is when my onc started talking about Verzenio which I really didn't want to take at that point due to diarrhea. He laid out his opinion of 75 mg Ibrance vs possibly being able to tolerate full strength V. Possibly. I asked my Moffitt docs opinion and she was ok with trying 75 mg. Neither doc would consider the 5/2 idea until the trial results were published. I told my other MO that I chose to try 75. My reasons were: QOL (no diarrhea on Ibrance), it was the devil I knew and I had learned to manage the SE and this left Verzenio in my back pocket to possibly take in the future. It's my body, my choice.Since I had to order 75 and I still had a lot of 100 mg pills, I tried 100 for a third cycle knowing I would not tolerate it. Yep. 14 days on and had to rest another 14 days.
My onc was ready to start 75 without a new blood test after a 14 day rest but I requested one. I wanted to know where I was starting. I wanted to give 75 a fair chance. I started 75 at 1080 and I was bummed it wasn't higher but after 14 days on 75 my anc was 1370! Yes, it had risen after 14 days on Ibrance!
I want to also add that once I was on 75 mg other blood issues such as my platelets normalized. My RBC count has remained low but is higher then it was at the higher doses.0 -
Thanks for all of this information Candy and RK, it is very helpful. The 2nd opinion Onc did mention an alternate dosing trial....but mentioned one week on one week off. I have not seen any trial of that kind. From the way he described it, I'm pretty sure he was misremembering the 5 days on 2 days off one. Not encouraging.
Both your stories are helpful....your experience does sound very close to mine RK. I think I will argue for trying Ibrance at 75 to see how it goes....both because of the diarrhea and as you say as I'd like to have it as an option down the road. We'll see.
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hi girls am new to this site and just interested to know how people are handling palbociclib. I am doing ok but am getting tired. Does any one have anything to share that might be of help.
And I am also interested in how it is effecting others. I feel like I am going crazy at times, not knowing whats real and whats drug influenced.
Cheers
Bridie
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Bridie,
Welcome to the club no one wants to join.You will find great information, empathy, and help here! I finished cycle 68 of Ibrance today…more than 5 1/2 years. It took about six months to feel like my life was somewhat was normal again, but it did happen! The exhaustion improved over time. The drugs fighting the cancer can cause new pain and more tiredness. Exercise helped me.
Hang in there! People here understand what you are going through and are here to listen.
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thanks for your response
I have been taking palbociclib for 2 years. At times I feel great but then I lose all my energy. Lately I have been more tired.
I was wondering has your cancer remained stable in the 5 1/2 year?. Do you work? I am at a point in my treatment where the cancer is stable but I feel like I'm 80. Lol.
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Bridie74 - Welcome to this thread. It's a great, supportive group of woman. From what I've gathered over time is that many of us (not all, but many) go through a period in the beginning when our bodies are adjusting to Ibrance. Then we seem to level off for awhile meaning our symptoms (fatigue included) seem to stabilize. Then if we are lucky enough to stay on Ibrance, at some point, the fatigue starts to worsen again. Some women even decide to lower their dose for no other reason then to reduce the fatigue and gain some QOL. I'm already on 75 mg so there's nowhere for me to go. I will say, however, that I felt completely different on all three doses so dosage matters in terms of QOL. Good luck.
Also, I am 56 and do not work but I retired early when I was 51 (coincidentally DX stage 2 at the same exact time 😥). I feel blessed that I was able to take that time to focus on healing without the stress of my job. I had a very mentally taxing job and worked long hours. Honestly, after stage 2 treatments, my brain was no longer sharp enough to continue my old job nor did I have the stamina for the long hours Sad, but true. And yes, my body feels like I'm 80
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Hi Bridie, welcome to this very supportive and informative conversation. With regard to palbociclib I'm a newbie compared to you, only two cycles, which you'll have seen have been up and down. I do identify with the uncertainty of what the drugs are doing though. Do have fatigue which I hope like others will resolve, at least temporarily. And recently a lot of joint pain which I think is from the letrozole I take with the palbociclib. Still working, though I feel the longevity of that is uncertain.
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Bridle, I've been on ibrance for over two years also. I have also noticed more fatigue lately. I'm on 100 mg and have discussed going down to 75mg with my MO but decided to give it a few more months.
I feel and look so much older too. All the years of low or no estrogen in my body have taken a toll.
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iwrite, 5 and a half years on ibrance is great. I hope to follow in your footsteps and stay on this combo a long time too.
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Simone - don’t even get me started on how these drugs have aged my looks exponentially! Chemo started the ball rolling. I tried taking collegan supplements when I finished chemo but my face continued to melt. Now the I/F combo has robbed every drop of oil in my skin. So now my melted face is wrinkling up like a prune. I’ve started to develop a tummy when I was always blessed with a flat stomach Oh well…I’m alive! Uglier, but alive. 😂
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and right after I posted about my looks changing, I read this and was slapped into an attitude change. Enjoy.
There once was a woman who woke up one morning, looked in the mirror, and noticed she had only three hairs on her head. "Well," she said, "I think I'll braid my hair today." So she did and she had a wonderful day.
The next day she woke up, looked in the mirror and saw that she had only two hairs on her head. "Hm...mm..," she said, "I think I'll part my hair down the middle today." So she did and she had a grand day.
The next day she woke up, looked in the mirror and noticed that she had only one hair on her head. "Well," she said, "Today I'm going to wear my hair in a pony tail." So she did, and she had a fun, fun day.
The next day she woke up, looked in the mirror and noticed that there wasn't a single hair on her head. "YAY!" she exclaimed. "I don't have to fix my hair today!"
Attitude is everything. Be kinder than necessary, for everyone you meet is fighting some kind of battle. Live simply, Love generously, Care deeply, Speak kindly. Be Grateful!
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RK, that's a good one. Thanks for sharing!
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Very nice, RK. So important to focus on what we can enjoy......even in the midst of everything else.
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I started the new lower 75 mg dose today, here's hoping the counts settle down. I just joined this circus a few months ago. I haven't even finished a whole cycle yet because of counts being too low and then wait for 2 weeks or more for it to go back up. The PAs can't even keep my dose right on the chart and then forget to call me after labs. I already ordered the 100 and then they decided to drop to 75. I keep having to change all my appointments. I'm trying to be patient and not bite people lol
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Hi all, it’s been a while since I posted and thought I would drop a line to say hello. Seeing many new names brings back memories of when I was first diagnosed. It’s been three and a half years now for me on Ibrance. Happy to report that things are going relatively OK. Like many of you, I’ve struggled with low ANC level. The last year or so I’ve been on 75 mg and for the last few cycles had to do 3 weeks on and 2 weeks off in order to maintain the ANC above 1. Recently, I’ve noticed some tingling in my hands and feet. Perhaps the toxicity of the medication is hitting my body. Also slight increase in liver ALT in the last blood work concerns me. Hopefully it was just an odd occurrence caused by the second vaccine or other unrelated matter. Well, life continues with MBC. It has brought much many tears but even much moreunexpected joy every day. Six months went by quickly and another scan is expected at the end of July.
Wishing you all well.
There is hope 4 us!
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MKestral.....sorry to hear about your frustrating first cycles with Ibrance, and hope the 75 dose goes well for you. Going through much the same thing, I sympathize as well with the frustration with communication and oversight on the part of your medical team. It's exhausting to have to not only go through this but also organize it all. I hope it gets better.
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prairiesea thanks, yeah the whole thing is exhausting! I hope things settle down and I am able to stay on Ibrance for a while because I don't really seem to have many other side effects that I can tell yet, except the low counts and fatigue maybe. I am not sure what is causing what. Being forced into menopause is obviously another layer of misery with the hot flashes. Then there is the other spinal cord injury recovery world. I am able to walk after lots of therapy, sort of hobbling around still, but I seem to feel better if I make myself move. (I had emergency back surgery in March because mets filled a whole vertebra causing cord compression). It's hard to know when to keep pushing through the fatigue and when to stop. I do some things one day and crash the next two. My current lesson: Don't overdo it on "up" days!
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MKestral I'm so sorry to hear about the cord compression and back surgery! That sounds really rough. I also have extensive bone mets. Am hoping that my collapsed vertebra will not cause that, at least soon. If I may ask, did you have cord compression symptoms that revealed that, or did they do the surgery based on imaging? Spine doctors I have seen are not keen to do surgery in the midst of so much disease in my spine, unless I have symptoms. So far walking and the other things that indicate compression are not a problem..... Anyway I do empathize. And would also rather be hiking! And I also tend to overdo on days when my back is feeling almost normal.
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Prairiesea, I was 3 years out from surgery, radiation etc for stage 2 breast cancer with nothing in lynph nodes and I thought it was beat.I did everything I was told and was taking the tamoxifen. There was nothing on followup mammograms, markers. There was no other followup imaging. I was finally trying to move on. I was working out and stuff, trying to get in shape. I kept having a back ache and muscle cramps, got constipated easy. That got blamed on other things. I went to a physical therapist who said something felt off and suggested an x-ray. Thoracic regular x-ray showed osteopenia and scoliosis but no fractures or tumor they could see. A couple weeks later I was trying to stretch and nerve zaps shocks went down both legs and my toes started to go numb. Within a week I was sort of half numb from my toes to my ribs and losing motor control of my legs. MRI brain and lower lumbar were negative but then I had terrible cramps and went to the ER. The thoracic MRI showed the tumor filled T6 and also pathologic fracture rib 7. They sent me for the surgery corpectomy and fusion T4 to T8. I'm really grateful not to be paraplegic, but I feel like it should have been caught earlier. There weren't any other mets, so I'm hoping to beat it down for a while and go backpacking a little this fall.
I hope you have lots of up days this summer
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Pocket duty for Candy, April, and Rabbit on Friday. Hope you all report good results; I'll be thinking of you!
Thanks for the precious story about the lady's hair, RK2020! Made me smile and is truly worth remembering.
Hello to everyone else; you're in my thoughts.
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Good morning! Has anyone read about this trial with lung cancer? Wouldn’t it be amazing if this test is as successful for breast cancer? 🤞🏻
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RK2020 that's cool. So I asked a tired rad tech why they didn't do a Pinkenblink scan on me. They said a what? Is it new? I said yeah, a Pinkenblink scan. When you do the scan, all the cancer cells turn pink and blink, can't miss em. hehe have to laugh at something right. I should have said you take a shot of Fireball, then do the scan.
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MKestral....thank you for sharing your story. What an ordeal, I can completely understand thinking there should have been some way to catch this before such a crisis. Having gone through 14 months of misdiagnoses for rib and back pain, though, I also know how easily it isn't caught. I hope the cancer treatments do their stuff and you are off on the trails soon!
Meanwhile, I have had my phone consult with the local onc. After some discussion of switching treatments he was persuaded to give Ibrance at 75 a chance. They'll check ANC counts Monday to see if I can start and, if so, again at two weeks to see if ANC counts are declining again. If they are I'll go off Ibrance and we'll decide on an alternate treatment when I return from my trip in late July. He suggested either Verzenio or, what I had never heard of, taking letrozole and fulvestrant together. I thought they were alternate treatments to suppress estrogen, but apparently there's been some efforts to pair them. Hoping that, as for others, 75mg on Ibrance turns out to be an option. He's worried that the low dose will be a problem, given the extent of my bone mets, but it seems like others of you with extensive mets have done well on this so I think we should at least see if I can tolerate 75 and it has some effect. TM tests next Monday too, so that should show something as well.
Be thinking of Candy, April and Rabbit tomorrow for scans!
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mkestral - 😂😂😂
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Thank you all for your good vibes for the scans tomorrow - scans plural for Candy, RRabbit and me! Oddly, this is the least scanxiety I have had in the past year and 7 months from stage IV dx. I think I get so much comfort from knowing I am not alone in this.
PrarieSea - relieved you can stay on Ibrance. I, too am on 75 mg. I don't have bone mets but it seems to be working fine on what I do have. It is frustrating and alarming how much we need to advocate, always. It's exhausting.
mKestrel - I am so sorry for what you have endured. I was stage 1, node negative in 2008. 6-7 years of femara, plus surgery, chemo and rads. I was refused any additional scans for the entire time due to "7 % risk or recurrence". Have always had "BEAUTIFUL" mammograms. GUESS WHAT - recurrence in lymph nodes in clavical and chest - never came back in my breast tissue. SO FRUSTRATING. It took 3 months of constant appts and pleas for someone to take me seriously with my symptoms in 2019 and I go to one of the top cancer centers on the west coast.
Rant over......I do have good care now but the lack of post treatment scanning for early stages in my opinion is criminal. I would have love this to have been caught when it was just in my superclavical nodes. My blood work/tumor markers have never been above normal so my onc doesn't even check those. Scans every 2 years perhaps? Insurance driven care sucks.
Edited to add: I was taken off Femara at 6.5 years due to bone loss and was told my risk complications due to bone loss was greater than my risk of breast cancer recurrence. Sadly, I mistook this as a local recurrence.
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I had blood work done every 3-4 months, then graduated to every 6 months. My last blood work looked great in mid October 2020. Pain in my back started November 9th. So while the doctor thinks my case is aggressive, I really think the blood tests alone were poor surveillance.
Since I am on Ibrance which should be working throughout my body now, I wonder if I can skip the yearly mammogram? I'm going to ask at my appointment next week. Is that a dumb question? I'm not afraid of asking dumb questions, but I do have a lot of questions about extra supplements, treatment regimens (like suggested above: one week on, one week off or 5 days on, 2 days off) for improved ANC. So I want there to be enough time to discuss the best questions.
I would love a shot of Fireball. That would be a great supplement to add.
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- GoKale - I get quarterly pet scans now so I no longer have mammograms.
Fireball for all! I rarely drink alcohol but had a hard cider with a shot of fireball at a halloween party a few years ago - it was pretty tasty!
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prairiesea, as you know, I’m covered in bone and bone marrow mets. I am on 75mg and have been for two years. I’ve had to go off around five times for an extra week due to low neutrophils. I hope this strength will work for you.
I have not heard of fulvestrant and Letrozole at the same time. I may ask my onc about that at my next visit. Please keep us posted on that.
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