Ibrance (Palbociclib)
Comments
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Hi all;
I am on Letrozole and Ibrance but have not been prescribed either Xgeva or Zometa. Should I be worried about my bones longer term?
Cathy
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Hi Seaway as long as you're on the anti estrogens you absolutely need one of those drugs to protect your bones.
Later one, based on outcome, you can go on a diminished schedule to protect your bones from SE of the medications that include brittle bones and fractures
I didn't protect myself when I went on femara and 18 months later I end up with 2 fractured vertebrae. I had very strong bones before going on the hormonals.
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Seaway Have you had a recent bone density scan? I did I have osteoporous. So when it was found mets on my femur, my Onc immediately gave me Xgeva. She didn't even ask or explain. I had been on an AL for I yr. and on ful/Ibrance where she did not give the shots Only when I strained a high thigh muscle she thought I'd a rib because of pain is when I agreed to B scan. Mets In just four areas.
This is just my experience... I'm a newbie....I suggest that your talk with your ONC
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Seaway, my Onc had me get a Hexa-scan to measure bone density so that we can pay attention to any issues down the road. I'm on Xgeva and their plan is to have me on it monthly, for 5 years. This seems to be the standard recommendation according to them, but I see lots of people with dosing of 1 x every 3 months. My endo also told me I should be on calcium, which I wasn't.
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Thanks Jaycee. Just got home from zometa infusion & lupron shot. Will see how it goes!!
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Hi Everyone! Started Ibrance/Faslodex/Xgeva in December & starting on 3rd cycle tomorrow. Not too bad, so far - the usual side effects. But I have noticed real changes in my fingertips - dry/cracking skin and almost like a swelling - so much so that my fingerprints are disappearing. I noticed this because my fingerprint scans on my iPhone no longer work. I redid them, and the new ones aren't working. Very strange! Yes, I have neuropathy in fingers and toes. I've had it ever since chemo many years ago and it never went away, but seems it is rearing up again. Not only is the neuropathy a bit of a pain, but the real pain is not being able to scan to unlock on my iPhone! Anybody else have this?
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meg - welcome to our lovely tribe. Sorry you are here but glad you found us! I am not having any similar issues but I have not had chemo in the past so maybe that has something to do with it since you already have a lingering neuropathy, perhaps the circulation isn’t as great at your fingertips? Not sure but hopefully you find out some answers ASAP!
Seaway: I started on Xgeva immediately and had it monthly for the first year. But then I read Bestbirds book and saw that after a year it could be reduced to every 3 months to help reduce the toxic burden of it. I don’t know why my MO didn’t suggest this but I brought it up to them and they said yes of course! So glad I read that book!
Snooky - so glad you are handling the new regimen so well. It is nice to know it isn’t so bad - I know how scary it can seem.
Wishing everyone a good night
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Meg8000- I definitely had trouble with the fingerprint on my iPhone while on Ibrance. I eventually changed to an iPhone X which uses facial recognition- works much better. I thought it was partially due to very dry hands- but, also heard fingerprints fade on Ibrance. I had worse neuropathy as well and severe leg cramps if I stretched at night without dorsiflexing my feet. I’ve been off Ibrance for a month and the cramps are gone and the neuropathy is much better.
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I wonder whether it could be the Faslodex or some interaction between the Fas and Ibrance that is causing the finger tip pain. I’ve seen others in the Ibrance FB group noting the same thing and they’re on Fas and Ibrance. Kelli Davis is one I can recal
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TY miaomix for tip on Claritin..much appreciated..
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Both of the articles below attribute fingerprint loss to hand and foot syndrome due to chemo drugs. They are both from 2015 so probably too soon for Ibrance. Neither mention Ibrance. I lost my fingerprints a few months after starting Ibrance or maybe earlier due to other chemo. A few months after starting Ibrance, DH and I got phones that you could unlock with your fingerprint. His worked fine. Mine did not. My son also uses his fingerprint to unlock his phone. When we were all together for my son's wedding, they laughed at me, made fun of me, for not being able to use the fingerprint system to unlock my phone. They kept saying I wasn't doing it right. Then my husband looked at my fingertips carefully. He said, "hey, she doesn't have any fingerprints!" I was further vindicated when I found articles describing how chemo drugs erase fingerprints. I don't have the typical symptoms of hand and foot syndrome so I'm not sure these articles are accurate about that part. I do have pretty severe neuropathy in my feet.
I don't think you ever get them back. Meg, time to look for a new way to unlock your phone. Upside: maybe some criminal activity would be possible without wearing gloves.
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Thank you all for the advice about taking a bone med on these drugs. I will be speaking to my onc about it. I remember I took actonel for about 5 years when I was on chemo before but not the last time. I had a bone scan when I was diagnosed with lung mets and although I have osteopenia in my back I just had a little more loss in my knees and feet. I don't suffer from bone pain but given that I could have breakage without it I think I'd better get on it.
Meg; Thanks so much for commenting on using your Iphone and loss of fingerprints. I have been having trouble with the same and thought it was the phone lol. So I guess I'll have to look for another phone. Bugger lol.
What would I do without all the great information and support here. Thank you all sooooo much. love you all.
Cathy
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Cathy, you don't have to get another phone. Most phones have multiple ways to unlock the screen. There should be at least a way to set a pin number to unlock. Mine also has face recognition, voice recognition and "safe places" where the phone is never locked. I set that to my house. It can also be set to unlock when near certain people or devices. You can look through the menu system under security and find the options. Unless, of course, you want a new phone anyway and this would be a good excuse. Hmmmm.
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Wow Janet, those are great options. Mine doesn't have them but when my plan is up I'll check for which phone has these. Thanks so much.
Cathy
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Fingerprints disappearing.... have noticed this past couple of weeks my IPhone doesn’t always recognise my print. Had a good look under a torch and they do indeed appear to be much smoother - You made me laugh Jaycee49, we could make the perfect criminals! Honestly this stuff 😱
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my goodness , Jen. 5 years? I'd heard monthly for 3 years then every 3 months and im concerned that is even too much. The stuff lasts quite a while in your system and has side effects id like to avoid. Ive heard less as well. Where are the studies???
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funny cause actually now that I think about it, I DID go through several months where my phone wouldn’t pick up my thumb print. I also thought it was the iphone but perhaps it is the Ibrance!!
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Re Cure-ious post
of Mar 6, 2018 11:12PMYou wrote "Yet another trial is looking at combining a
new CDK4,6 inhibitor, Abemaciclib, with the checkpoint immunotherapy, Keytruda.
The idea in this trial is based on
findings reported in Nature last year that Ibrance
can cause T cells to migrate towards breast cancer, which is one thing that makes it not sensitive to immunotherapy"Can you tell me if you are
referring to the article “CDK4/6 inhibition triggers
anti-tumour immunity” by Shom Goel et al?I could not see anything about
Ibrance making cancer cells not sensitive to immunotherapy in this
article. Was it implied? If so, could you explain a little?If it comes from a different
article, could you please provide us with a link?Many people in this forum take
Ibrance and are seriously considering some form of immunotherapy. I imagine
they would appreciate learning whether they should take the article to their
oncos to discuss the potential conflict.Thanks for all the good info
you post here!0 -
I just popped in to see how my fellow ibrance dancers are doing, and strangely enough I have been meaning to google fingerprint loss with meds as I have trouble typing with my iphone sometimes...does not want to recognize that i am using fingers
I wish you all well and warmth during this particularly cold winter...0 -
Hello fellow Ibrance users. Last year I had to get fingerprinted to get my medical marijuana card. The technician took them three times trying to get a decent set. The State sent back the application because the fingerprints were so faint. Alas, I would make a lousy criminal even without fingerprints. I’m too scared to break the law...except on the highway with my lead foot. Sending good mojo to you all!
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Hi All.
I lost my fingerprints before I went on Ibrance probably because I washed them so much, but only on the electronic pads. The technician at the time knew enough to take them the old fashioned way using ink and that worked so I could get my licenses (teaching and administration.) I know that won't help you on the phones, but in case you are worried about something else, you can always try ink. It was only 4 years ago so it is possible that they will still do it if you need it.
Love you gals! Chris
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isn't marijuana legal in CO? I'm approved for medical cannabis in MN but didn't need to be fingerprinted. Every state must be a little different but MN is pretty strict. How is it going taking it with Ibrance? Mine is mostly CBD with only about a tenth THC. It seems to help with the side effects of aches and pains from I/L.
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Hi Very Concerned,
Well that comment was clear as mud, wasn't it!! You may notice that my comments are almost always edited, because I often type too fast and make mistakes, in this case, we were discussing studies showing that Ibrance can make cancer cells susceptible to immunotherapy. This is from pre-clinical studies that were carried out in mice- here is that 2017 Nature paper I was referring to:
https://www.ncbi.nlm.nih.gov/pubmed/28813415
That paper shows Ibrance can increase tumorigenicity of the cancer cell and can also suppress regulatory T cells, which together enable the cancer to respond to immunotherapy. So why, two years later, are we still not getting immunotherapy with our Ibrance? Well, its because there is no clear data as yet that immunotherapy would work with Ibrance in humans. The PACE trial is looking at this, and announced postitive results at the very beginning (SABCS 2017) but then they were a no-show at SABCS2018 and have gone radio-silent since then.
There is an onclive video interview of Joyce O'Shaunasee who comments that the patients she has on Ibrance for a long time often show continuing improvement in their scans. She says this is not what you normally see with drugs, more common is just to get to stable and stay there - so she presumes she is looking at the effects of a heightened immune response to the cancer, which continues to improve the situation. I like to imagine that Ibrance is helping my immune system to reduce the overall tumor burden in my body, and want to take it as long as possible for that reason, but its really puzzling why we do not have a clear answer to whether we would get a better response if immunotherapy was included.
There are other trials taking different approaches with immunotherapy-by adding other agents to make the cancers respond, such as an EP4 inhibitor, anti-angiogenesis inhibitors, or CpG peptides. So if Ibrance is not the ideal agent to make immunotherapy work, then maybe its better we have not been exposed to immunotherapy just yet, so that we remain eligible for a trial using some more promising drug combination..
PS Here is another paper, showing that Abemaciclib causes enhanced immune attack on tumors and makes checkpoint immunotherapy work
https://www.cell.com/cell-reports/pdf/S2211-1247(18)30234-1.pdf
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https://www.cell.com/cell-reports/pdf/S2211-1247(18)30234-1.pdf
This is curious's second link in the above post that doesn't work but this one does. I gotta be good for something.
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thanks, Jaycee!!
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Cure-ious-Thanks for this encouraging news. Wouldn't it be great to take immunotherapy with Ibrance? I started cycle 31 today, still at 125-hoping it still is breaking down all the cancer cells in my body. (I'm probably not scientifically correct but that's how I like to think about it!)
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Hi All,
Finished cycle 14 of Ibrance/Faslodex. Starting cycle 15 on Monday.
I do not have anything brilliant to contribute like so many of you.
All I have to share is a reminder that Spring is Coming...And we are here to see it...even when we did not believe we would still be here, we are...
Gumdoctor (Yes I am a Game of Thrones fan...)
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Hi all. Hope everyone is doing ok.
I wanted to ask a question of the group: Do you ever get a case of the chills?
Let me explain. I usually only cover up with a light blanket due to the hot flashes. Last night I could not get enough covers. I shivered all night. I got up during the night and took my temp--normal. This morning back to the hot flashes. No other symptoms--no nausea, diarrhea, no cold symptoms. The thing is I have done this before, several times, since diagnosis. I always check my temp in case I have a fever to report and no fever. I got to thinking. When it has happened before I have not thought about a pattern. I am on my week off Ibrance. I have had more fatigue the last couple of days. I received my monthly Lupron injection yesterday. Isn't there something called a tumor fever?? But I don't have a temp on the thermometer.
Thoughts....
I go see my MO this week. I plan on reporting this to her. I have not mentioned the episodes of the chills to her before. Never thought to, I guess.
Looking forward to others chiming in. Nice to ask the group when we have weird symptoms.
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@candy-678 I would report to your MO. Sometimes if your counts are low you you may not be able to produce a fever and chills could be the only sign of infection. I'm obviously not a doctor, but good idea to report at your checkup. Just wondering why you are on lupron in addition to letrozole? Haven't heard of that much. Thanks for sharing!
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Thanks everyone for the nice welcome and for all the contributions with regards to fingerprints. I've been taking a good look at my fingers and can see it is swelling that is causing the fingerprints to "disappear", or not be as obvious. This is more pronounced in my right (dominant) hand, than my left, and right is also where I had lymph node removal. This is definitely a mild edema, and I'm wondering if this is a mild form of lymphedema. I doubt this has much to do with the removal of a single lymph node, 8 years after the fact, but according to the series here on BCO about lymphedema, that can't be discounted. Although that may play a small part in the fact that the edema is more pronounced in my right hand than the left one, clearly there is some kind of visible edema going on in both. I'll mention it to the new doc I will see this week. I mentioned it to my current doc -- well, the PA and nurse, since I actually didn't see the doc, and they down-played it and the mild neuropathy and told me my medications don't cause neuropathy. I don't believe that, since I have seen them on lists of meds that cause neuropathy. I'll also mention it to the Phizer nurse that calls to check on me. She's more interested in the side effects than my doctor's office is.
I made fingerprints for my left hand on my phone, and they work. I also massaged my right fingers and hand, and elevated them for about 30 minutes, and then my prints registered on my phone. I also noticed "wrinkles" in my fingertips after the elevation - more evidence of the edema. Clearly one of the medications is causing this - can't say if it's Ibrance or Faslodex, or even Xgeva. Meanwhile I will increase hydration and make a sincere effort to do a little walking, since I've been very lazy and sedentary, and need to do all I can physically to be a partner-in-health. Jaycee - thanks for the articles. There are current articles, too, that mention the same. I just thought this was a personal oddity because of the dry and cracking skin. Right now I'm thinking this is just a temporary effect of the edema. I don't think it's a permanent loss of fingerprints, as the whorls are still visible. Anyway - interesting to hear of everyone else's symptoms and experiences. Thanks Ladies! Gotta love the hive mind!
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