Ibrance (Palbociclib)
Comments
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Lalady, ouch. Sunburn and blistering to half your cheek?!?! Have you gotten any feeling back into your chin? How is your "face plant" from your fall a couple of weeks doing? Please do me a favor and stay upright during your walks.0
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Shetland Pony - It's been on my mind to find this Circulating Tumor Cells test after reading about your scan drama. It's a way to monitor cancer in the blood and may be a useful test for ILC, given that ILC can hide in scans. Here's a link to the company. Something to discuss with your doctor. It seems like it should be more useful than tumor markers to detect recurrence, but I am still reading up on it.
I am currently wading through a long thread on Inspire about CTC testing. I'll let you know if I learn anything.
Biocept seems to be the other test.
>Z<
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I'm curious how much people's counts bounce back between cycles. I'm just about to finish cycle 2 and have found that I don't really bounce back much at all. I guess I'm somewhat lucky that my counts run a bit high normally, and they've pretty much halved and stayedat those values since starting Ibrance and Letrazole.
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Jen, I am about to finish up my second cycle of our Ibrance/Letrozole cocktail which will end on on 10/31 for the Ibrance and the Letrozole a week later. My numbers for the WBC are as follows:
9/12 (starting point) was 6.1
9/26 was 3.0
10/11 was 3.5
10/25 was 2.32
Huge changes is my ANC levels. Same dates as above, went from 3.63 to 1.41 to 0.96 to 0.86
Hope this helps.0 -
Jen, I've always needed more than a week off between cycles for mine to bounce back. But now 15 mos. in my lows are lower than they were 15 mos. ago and I'm taking a full two weeks off just to get back to new, lower "normals."
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Hi, friends. I'm here with a strange question (my specialty): Would it make sense that a sign of Ibrance not working as well anymore is your blood counts (particularly white blood cells) getting better, especially if it's accompanied by a rise in CA 27-29 tumor markers too?? I'm on my 6th cycle (along with Faslodex and Zometa) and for the first time, my CA 27-29 level didn't drop; in fact, it rose a bit. Now, I know tumor markers don't tell the whole story and can fluctuate based on all sorts of things (so far I've read inflammation, stress and possibly even alcohol can affect them - anything else?). So I don't need reassurance on that.
What struck me -- as I obsessively plugged all my new lab results into my ever-growing spreadsheet, complete with graphs! -- was how some of my CBC results seem to have rebounded nearly to where they were when I was diagnosed at Stage IV in May, even though I was just ending an Ibrance cycle. And this is where my twisted mind went: Could it be that just as Ibrance often causes a decrease in white blood cells (by messing with the process of cell maturation, I think?) when it's working, maybe when it stops working, not only the cancer cells start increasing again but also the various blood cells?
I'm hoping someone with a better grasp of how palbociclib works can shed some light on this - even if it's to tell me I'm way off! Wouldn't be the first time....0 -
Thanks Cheryl and Deanna. I'm only at the start of this but so far my WBCs aren't bouncing back. The new lower levels aren't terrible yet, but I definitely feel the difference in my energy, etc... I'll get new labs on Tuesday and I'm very interested to see where I am then.
I also got some info from the specialty pharmacist about Ibrance and surgery. All he could tell me was that the concern was of course low platelet counts and how that would affect wound healing. I think this info has been shared before, but the half life of Ibrance is 29 hours give or take five hours to reach 50%; 3 to 4 days to reach 25%; and the closest to almost 0% would be 5 half lives or 15 to 20 days. I'll talk with my Onc and PS about stopping Ibrance a month before and after my surgery date, I guess. I'm having DIEP FLAP on Jan 24.
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Hi Jen - my WBC at round #11 are: 2.58, RBC 3.09, NEUT 1.38. I needed a blood transfusion at start of round 2 when my HGB crashed to 6.9 (currently its 12.3). I am hoping your wound healing is not interrupted with your January DIEP flap. I had a rough experience with a single trans-flap and would not recommend one. Did you use a tissue expander to try a foob? You can PM me for details. Seagan - that is a good question. So far my TMs have dropped (with one exception), but my thinking is that our scans tell a better story.
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Seagan - I wouldn't put too much stock in a single blood test, period. Also, my neutrophils and WBC haven't really dropped at all and my tumors are going away. The low neutorphils and WBC are not something that happens to everyone that responds to Ibrance.
>Z<
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Jen, when I had a dental implant done I had to have a sinus lift and bone graph done first. The dentist said it would take 5-6 months for the lift and bone graph to heal. My girlfriend told me to take Ester C, Zinc and No Flush Niacin because it helps with healing. I did it and after 10 weeks the dentist was in awe as to the bone growth and healing. You may want to try that as it helps with healing anywhere in the body. BUT, I have heard conflicting theories on vitamin C. I have been told vitamin C is good to take for people with cancer and an oncologist over at USC NORRIS said to stay far far away from vitamin C because it feeds your good cells as well as cancer cells. You may want to do your own research. I would love to know what you learn and what you decide. I don't know if there is much difference between regular vitamin C and Ester C.0
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I'm starting my 11th round. Had three scans so far. Liver spots gone, bones healthy and significant decrease in lung nodules. Still have fatigue and hip pain my week off.
I don't take any supplements except calcium, magnesium and vit D. While I'd love something to combat the fatigue, I'm afraid to try too much as my scans are great. I know I could always eat better and exercise more.
My extraction site is healing well. Plan to resume Xgeva in January. That would give me four months to heal.
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Congratulations Zills! I am interested in your treatment history. Would you consider bringing it up to date?
I am staring cycle 10 on Sunday. All my liver and bone mets were gone as of July. There was still something going on in my breast at that time, but hoping to be NED in my scan in December.
>Z<
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The new additional jargon added to our history drives me nuts. I can't figure out how to add in Xgeva or explain my dx dates.
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Zillsnot4me, I couldn't figure out how to add Xgeva, either! I get one injection per month.
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Zills and Kattsmith - I include the Zometa treatment info in my signature under settings. For some reason Zometa and Xgeva aren't part of the treatments that can be selected in the treatments section.
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Thanks, AnimalCrackers! And now I'll be singing that all day!
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I actually created a new post with the following, but only one person found it, so I'm reposting here, where it probably is most relevant:
So, once again my doctor is suggesting I enroll in this clinical trial. I am currently on Ibrance and letrozole, with stable bone mets and TMs creeping up. They want to add keytruda to see if the stable mets will disappear on the new protocol. Here is my dilemma.
1. I currently already drive for one hour in each direction every four weeks for labs and my xgeva shot. Now I would have to go every three weeks. Keytruda is an infusion that takes thirty minutes to administer.
2. My side effects are currently tolerable. Not perfect, but I certainly don't want to deal with MORE possible side effects.
3. I've been on this combo for 18 months (I think 22 months is the average time to fail). I've never been NED on this combo, although I have been NED in the past. So,my time may be running out on this protocol? Adding an immunotherapy could potentially give me a nice boost.
4. I do have the option of radiating a single bone met, which could also 'potentially' take me to NED, but radiation has its own side effects, and it won't help me systemically.
5. I COULD wait until I have some visualprogression, and then decide to try it. I believe the trial will continue enrolling for another year. But, of course I would rather not progress.
I would love some input from my community. Here is the link to the trial.
https://clinicaltrials.gov/ct2/show/results/NCT027...
Stefanie
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Hi Stefanie,
Here's a post about keytruda with a couple of links that might interest you:
https://community.breastcancer.org/forum/73/topics...
Zarovka has been researching this for a while and I hope will check in with her thoughtful insights.
best, STephanie
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In a phase 1B trial Keytruda alone had a ~12% response rate in ERPR+ breast cancer patients. That's the problem with immunotherapy generally. They get a response and sometimes a very strong response, but only in a small percentage of patients. They are seeing stronger responses with immunotherapy in combination with a chemo. To that end, they have the one small trial of Keytruda in combination with Ibrance. I've noted that trial. It's not realistic for me because it is in Los Angeles. But even if it was close, I would think twice before enrolling. Here's my thinking.
ERPR+ breast cancer hasn't been found to been found to be highly immuno-active. IOW, it is hard to get the immune system to see it, harder even than other cancers. Immunotherapy trials focus on other cancers because they are easier, and they are still having a hard time. I hope the trial in LA knocks it out of the park, but the study comes across as a bit of a hail mary.
Even when they do get a better response combining pd-1 inhibitors with chemo, it's still not that much better. It is early for immunotherapy and very very early for immunotherapy for ERPR+ breast cancer.
There are studies that show no real difference in overall survival between those who achieve NED and those with stable mets, particularly for people who are not on their first treatment and were not diagnosed de novo. So the fact that you are not NED isn't an indication that you are about to fail on ibrance. 22 months is median and includes people with a lot of other stuff going on.
If participating in the trial is going to interfere with your ability to maintain a healthy diet and exercise and increase stress, then it will almost certainly worsen your prognosis.
I am putting my efforts into diet, exercise and some alternative therapies that may complement the Ibrance. I can do these at home without disturbing my routine and think there are many things that may help.
That said, we all have to be prepared for progression. Our doctors don't seem to share that opinion, leaving it to us to research and plan. I am writing up notes for myself. As far immunotherapy goes, this trial keeps popping up. It has worked with ERPR+ HER2-
https://clinicaltrials.gov/ct2/show/NCT01174121?te...
That's my thought.
One does not want to leave a stone unturned, but we also don't have time to chase treatments that aren't going to get us anywhere.
>Z<
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Good thinking, Z.
Plus, I believe that life is all about love and joy and following our hearts, not chasing every possible treatment option that pulls us away from our own true life goals!
Sometimes staying at home with beloved family or in our communities where there is support is more important than fighting cancer.
At least to me and to a friend who visited today - she's factoring joy into her treatment goals and coming up with a different summation than a purely medical equation would yield.
All love, Stephanie
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Yes been on it for 4 months now
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Welcome Glosav! We look forward to hearing more from you!
--The Mods
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Hello everyone, well I just finished rd#10 yesterday. The side effects seemed better with this round except the fatigue really bothered me the last couple of days. I wonder if that ever improves. I do think my hair has stopped falling out, although I'm afraid to rejoice too much for fear it will start coming out again. Has anyone here that has been on this combo for several months longer than 10, notice almost all the side effects getting betterment and staying that way?
I did have another issue crop up. I'm starting to develop lymphedema in my left arm, the cancer-mastectomy side which was 25 yrs. ago. My cancer came back also on the left side in that lung. A lung infection just happened in the same place. I wonder if that caused the swelling? I'm having lymphatic drainage and wearing a compression sleeve.
Will write more later. Off to get a much needed massage.
Faith (in the future)
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Faith,
I've been on thiscombo for 18 months. The SEs come and go, but mostly are tolerated. I have never had hair loss. I also developed lumphedema last summer after a long travel stint to Africa and back. With drainage, massage and compression my left arm is 99% back to normal. I still wear my compression sleeve when I work out or when I fly, and I'm having a professional massage about once a month. Good luck with everything.
Stefanie
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Stefanie, thanks for your reply. The therapist who's doing the drainage is going to have me fitted for a compression sleeve which I will need if/when we travel. Right now we have no immediate plans but will hopefully be going to Idaho next May for our granddaughter's graduation. We are also tentatively planning a trip to Italy next year. I think I can get some frequent flyer tickets if we plan far enough in advance and then we could rebank the miles if if things don't go as planned. It's scary to think about but I'm tired of putting my life on hold for the big C.
I sure wonder what has caused this lymphedema for me after all these years. I guess we'll never know.
Good luck to you too and let's hope this lymphedema goes and stays away for both of us, ant that this Combo keeps the cancer at bay for a long, long time.
Faith (in the future)
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Hi Ladies,
Looks like soon I will have to switch from Afinitor/Aromasin to Ibrance.
I think its a combo, right ?
I have years ago failed on Femera, and Faslodex too.
What else is out there to combine this drug with.
Any experience would be nice.
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hi all,
Took a break from BCO, but am back now. Heading into cycle 5. My counts were really low this time at 2 week period, not sure what they will decide on Tuesday. I'm at 100mg right now, started at 125mg which made my neutrophils drop to .67, they were at 1.1 last time with a week left.
Mamita, my understanding is that you can take Ibrance with any AI or even tamoxifen. And even if one of the AI's failed you in the past, they will give it if ibrance is working for you. At least this was the info given to me in the ibrance trial that I'm on. Tamoxifen failed me 2 1/2 years ago, but my onc says that if Femera gave me too many SE's we could try tamox again.
take care all, cheers, dee
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Hey all - have been on Ibrance/Femara/Xgeva for bone and lung mets ER/PR+/HER2- since May 2015 with stable scans and some regression here and there. Here is my 3 month check in: Stable CT scan, bone scan revealed possible 3 new very small spots on left ribs. No pain there and tumor marker CA 15-3 has been steady and actually dropped since last scan, currently at 31. Onc doesn't think true progression and is staying the course until scans in 3 months and then will revaulate if needed. Anyone ever have false positives on bone scan
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Zimmerwoman - they may be false positives or your previous scan may have been a false negative. i don't know how small you are talking about, but anything below 5mm and a given scan on a given day may or may not pick it up. also, can they tell with confidence if those bone tumors are sclerotic or not? they may be too small to say. sclerotic bone lesions are likely healing. oftentimes bone mets do not appear in the scans until they are healing when they become more visible. my bone met did not appear until was healing and sclerotic. in any case, i am glad your oncologist has chosen to watch and wait. i feel that people over-react to small changes in scans and change treatments too quickly.
another issue is that ibrance can take 6-12 months to really kick in. it worked fast for me, but that is not always the case. and welcome.
Dee- it is so good to hear from you. i wouldn't worry about dropping down to 75mg. the correct dosage really depends on how your body metabolizes the stuff. should be quite effective at the low dose. how are your side effects besides the neutropenia?
Mamita - there is a whole theory around cycling aromatase inhibitors. it can make sense to go back to them even after they have failed. here's a BCO top on the subject. and welcome to you too.
>Z<
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Z - you rock as usual! I am working in ABQ next week (staying at Isleta Hotel Thursday - Saturday) for the NM film conference - wish you lived closer so we could meet and share a cup of tea. PM me if you are anywhere near. I'm heading into round #12 next week. Since starting in Jan 2016, I've had hair loss and fatigue and watery eyes. Went to eye Dr yesterday and had left eye irrigated. Feels much better today. I am walking everyday and limit sugar. Still have one coffee a day - but then I am still working full time. lol Excited to see new ladies here (but sorry to welcome you). Mamita - I take arimidex with my ibrance (@100)+fas shots. Only issue is a pesky jaw met. My TM was 38 in August; sternum and left lung stable. I had left lung drained again yesterday, same amount, just a tad painful. Dee- Rooting for you! Faith - sorry about Lymphedema. I hope the sleeve gets you back to new normal.
(()) Claire
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