Ibrance (Palbociclib)
Comments
-
Penny, so sorry your results weren't better. Hopefully the next tx will knock it on its socks. Best of luck. Myra.
0 -
Shoot Penny, I'm sorry! Let us know how your doing and what's next for you. Hope you have a good weekend.
0 -
Penny I'm so sorry that the Ibrance didn't work for you. I know how disappointing it is to fail on a drug that held so much promise. Believe me, I've been there also. Please let us know how you're doing.
0 -
Penny, that is disappointing, for sure. I'm so sorry. We're all just treading water here, hoping that this thing works for us, but certainly no guarantees.
Yesterday I had a very specific burning pain for several hours in my chest, very close to where my original tumor was. I'd never felt that before. Today it's gone, but i feel little prickles around my liver area, where I also have mets. Very peculiar! I hope the med is whacking them down, but one never knows if they're shrinking or growing. We just have to hope.
Best wishes, all, and especially for all of the mother's this weekend. I hope everyone has something nice planned either with family or with friends. We deserve celebration!
0 -
Penny, Sorry to hear the Ibrance was not working, I hope you will find another treatment that works for you - not sure if you've had a genetic study, but maybe this would help you find the right treatment.
I had a genetic study done on my original tumor tissue which they kept (Although doctors said my tumor was not caused by genetics, they said they can sometimes predict how the original tumor will mutate in order to inhibit pathways and escape treatment). Two of those mutations in my study were in the ADK and CDK genes, and Ibrance targets one of those mutations (CDK I think), so the doctor thought it was worth a try. They keep coming up with new drugs all the time to target different mutations, so hopefully you will find another.
My first 2 cycles ended last Saturday, and at my appointment yesterday the doc said my ABS neutrophil count had gone down to .49 (had been 1.2 last time), so I won't be starting Ibrance on Sunday as planned and will have another blood test Tues to see if I can start cycle 3. The good news, though, is that both tumor markers (CEA and CA 27-29) went down (and this has not happened for a very long time), so I think the drug is working (now if I can just get the blood count up so I can restart it).
Hope, my eyes do bother me all the time, but I have had sensitive and dry eyes for a long time, probably from wearing contacts. They do seem to bother me a lot more lately, though. Someone told me fish oil helps with dry eyes (the cure for everything, too bad I am not a fan of fish, but I do try to take the fish oil and vitamin D when I remember).
My side effects have not been bad after 2 cycles, except one day last week - Finally the weather turned beautiful here, so I opened all the windows, and got hit with what must have been huge burst of pollen (I heard there will be many bursts this spring as a result of the severe winter) - the worst allergy symptoms ever - cough, sore throat, severe headache/earache, wiped out, and for some reason severe heartburn - all of which kept me up all night (heartburn may have been due to going back to having a cup of tea for 2 days which I had been avoiding since it's worse than coffee for heartburn). I was much better the next day, so I think it must have just been the allergy, and now hopefully it's just the usual allergy symptoms I always get for 2 weeks in May. The doctor said I can take the Prilosec on my off week, so I will be doing that from now on, then switch to the Zantac when taking Ibrance. Trying to eat smaller portions and cut out fried things, but not ready to give up morning coffee.
I hope everyone has a wonderful Mother's Day weekend!
0 -
Hi there!
My mom will be starting Ibrance + Lezotrole tomorrow. The last four IV chemos were not helping her so this is her next route. She has had malignant pleural effusion around her lungs for the past six months and so that on top of everything else (mets in bone + liver) has been tough. Constant coughing and shortness of breath day in and out is no joke.
We sent an amount of the liquid from her pleural effusion to be tested recently and it came back showing Ibrance as effective for her. Even before knowing the test results, her oncologist had that next on the list & we were waiting for approval on that drug from insurance, so it worked out well.We understand that nothing is guaranteed, but hopefully that finding proves true in real time for her.
Crossing fingers and saying prayers that this new treatment works wonders for her and for all of you!
All the best!
0 -
Hello,
I am following this thread since its beginnings because I am/was on the faslodex combo with Abemaciclib (LY2853219/Eilily) trial (phase 3 study) which is similar to Ibraxane (palcociclib/Pfizer) - there are some differences I guess. Because of all the side effects I had (which all were very similar to what I read on this very useful Ibraxane thread) it is cristal clear that I didn't receive a placebo. I had to pause 2 to 3 times for days due to low counts with 3 blood transfusions in-between, a.o.
I just heard I have 5 new mets to the spine and so, after 3 months, it is already over for me. I'm so sorry for posting this negative message because I hope and I am sure it will work for a lot amongst you! I am just a little oscillating at the moment. Now I don't know either, just like you Penny I am awaiting the next option. There was some namedropping: Afinitor, Xeloda possible in combo with faslodex ... ??
All the best wishes
0 -
Penny and solada, so sorry to hear you're moving on. I guess at this point in the game as stage iv, we all have been there with the hoped for miracle not working out that way, but darn it sure does stink. I hope both of you have a long and successful run with whatever's up next.
I'm still battling this stupid headcold, now on day 14, I just seem to be at a stalemate with it, not better, not worse, just there. I go in a few days to get my blood tested and see if it's low enough to take additional action. At least it means 1 more week and it'll be time for my week off of Ibrance and hopefully a cold-free rebound. Or maybe I need to go back on vacation since I wasn't sick then, maybe that's it!
Holly and Sarah, could you tell us more about this testing you did? Was it something your oncologist ordered or did you initiate it? Where was it done? Did insurance cover it?
Hope you all have a wonderful weekend and Happy Mother's Day to all the mothers in our group
0 -
RosesToeses,
The genetic testing is being done at several places - a huge study is being done at Sloan Kittering, but I had mine done through Dana Farber (the drug company paid for it) and there was another study being done at Mass General, so I'm sure it is available in many places. I didn't realize the hospital had kept the original tumor tissue, but since they did, I didn't need a biopsy or anything, just signed the form. My doctor recommended I do the study, and I'm glad I did. I am trying to get a copy of it.
Sorry about your cold, I wonder if you have any allergy (these are the worst couple of weeks for pollen) which could be aggravating it? Zyrtec helps me this time of year.
SarahS, good luck to your mom, i hope ibrance helps with her suffering.
Solala, sorry to hear the Elilily drug didn't work for you, I heard it sounded promising since I thought the blood counts didn't go as low, but I guess it depends on the patient - everyone is so different and I guess that's why these drug companies are doing so many of these genetic tests to find out which drugs work for which patients.
0 -
Happy Mother's Day All! Enjoy! 👭👬👪 Myra
0 -
Hi Ladies
Just wondering about being eligible for Ibrance in the US. It won't be licenced in Europe until the end of 2016 but I contacted Pfizer (Irl) and they said that my treating physician could apply for the drug on my behalf. However they also said that the programme for accessing Palbociclib in Ireland is open to patients who have already had 4 or more prior therapies in the advanced setting (which isn't much use to me). According to my onc you have to have failed 4 treatments. Is this the case in the States? I'd love to know as I'm due to start Afinator next week and I want to get Ibrance...
0 -
Aoibheann not sure, but I don't think that's the case here in the US. Someone else on this thread may know for sure. I have had Afinitor and it was really not a bad drug and worked for over a year. Took a couple of months to adjust to it, but after that it was not difficult. It's good that we have options.
Finally went and had my bloodwork done today. Was suppossed to go last week but didn't. So today is day 19 of my third cycle. The WBC was 3.4 and the RBC 3.2, HGB 10.6 and my platelets were normal. My onc was very pleased with that. Only slightly low and almost done the third cycle. Maybe its what someone else had said that your body adjusts. I have been taking all of the supplements and will continue to so. I'm thinking that they must be helping. Now I'm nervous about getting my TMs done. Probably the end of the month.
0 -
pearlady, your counts were great. The bloody nose you had mentioned prior may have been the Ibrance SE several of us have been having since ur platelets were normal
Aiobhean, sorry I don't know much about this. I hope you have good luck with all ur tx.
Myra.
0 -
Myra haven't had the bloody nose since last week, so won't think about it now. But I have been taking all of my supplements since then and I'm sure that they helped with the WBC, RBC and HGB. Hoping that the TMs are as good.
0 -
Aoibheann,
No, I don't think that is the case in the states. My onc originally thought I might have trouble because the drug was approved (FDA) for first line only. But doctors have been prescribing it based on the latest trial that shows it helps women who have had subsequent treatments as well.
I have read of women on other sites-this one, too, I think, who are using it as a first line treatment. At this point I think the main requirement is that your are ER positive with metastatic disease. First, second or third line is fine, it appears, after mets diagnosis. Also, as far as I know, it supposed to be taken with Letrozole (Femara). There are trials going on with others- Faslodex, I think-- but I don't think it has been approved with other hormonal drugs yet.
Pearlady- great news on your blood counts! It seems like whatever you're doing is working for you!
0 -
Anyone,
I have had a long history of BC with many reoccurrences but always at a early stage. A few weeks ago, I was DX In this stage. I have only been on Ibrance and letrozole for 5 days, so nothing to report yet.
For those who have experienced low WBC do you avoid public places? What do you do until the counts return to a normal range?
I have read many posts and find them comforting.
-
0 -
Hi again Max otto,
I just finished my first 21 days of Ibrance and am waiting for my doctor's appointment during my week off. So far, I've been very healthy. I am a little tired, and have noticed a few low platelet symptoms, but overall I've been fine and have not avoided crowds. In fact, I took a flight to Chicago and back last weekend and saw the city. I've been marketing, eating out and going about my normal life. I did wear cotton gloves on the plane, but other than that haven't done anything special except try to get my full night's sleep. I hope every cycle is this easy.
0 -
Max Otto,
I have the low WBC - I am not avoiding public places, but am avoiding really dense crowds in stuffy rooms with bad air circulation. Still going to church though I sit in back where there's more air, and still going to the supermarket, though I avoid it when most crowded. Also try to wash my hands a lot and wear gloves cleaning and gardening. Hopefully it won't be as difficult in the good weather with open windows and doors, and less viruses going around.
My doc thinks time will bring up the WBC, doesn't think anything I eat will do it - I will see at tomorrow's blood test (if not I may have to get on some of PearLady's supplements!)
Good luck with the new drug!
0 -
Good luck tomorrow, Holly!
0 -
Max - I took a tip from this thread too and bought a pack of white cotton gloves for airports/travel since my counts took a nosedive. Someone said they were told by an airline insider that it's not the airplane air that's so bad but surfaces that are sometimes not cleaned properly.
I haven't gone out of my way to avoid crowds.Still you should see me bobbing and weaving when anyone sneezes in my general direction
Hoping for good counts for you Holly!
0 -
Good luck Holly with your appointment tomorrow . For me it's almost impossible to avoid crowds. I work in NYC and take the subway .Haven't really thought about not doing it, but so far so good. Also go to the theater opera and ballet frequently . I guess the supplements are helping. My worst issue right now is having trouble sleeping . Makes for challenging days.
0 -
I carry a package of those little hand cleaning wipes with me all the time. I try not to touch stuff in public, but if I have to I use a wipe afterwards. I tried once wearing gloves in the market and it just isn't worth it. I think I'd wear them on the subway if I traveled that way, though.
0 -
I'm just curious, has anyone had an initial lowering of tumor marker numbers and then have them creep back up relatively quickly? I'm fearful that that might happen with me when I get bloodwork done next week.
My tongue cleared up and looked much better after round 1 and the numbers showed there was a dip. But it's more coated this go round... My acupuncturist noticed it too. Please forgive my paranoia. This whole process is nerve racking.
0 -
kaydeesmile, my TMs went down and then One went up and one went down. Don't apologize, we are all stressed. Myra.
0 -
hello again
I just finished my first 21 days and hoping I feel a rebound in my energy level that several of you have mentioned
I had a few nosebleeds and a mouth and nose sore. I just started noticing a weird feeling on my tongue and food isnot tasting right. I tried to look through the thread- has anyone noticed the change in taste?
Thank you!
Margie
0 -
Thank you Myra, it's so good to feel like I'm not on this roller coaster alone. I'm grateful for you and everyone who posts here.
Hi there Margie - My tongue looks a little different - but so far no noticeable change in taste for me.
0 -
Not really any change in taste. But definitely less appetite . Seem to get full much quicker.
0 -
Hi Ladies!
I woke up with a couple mouth sores and it seems like I have decreased taste today. I am tired today too but I've also been taking care of my dad who had a heart attack Thursday... So it could be that! It's weird to have the mouth sores for me because I never had any sores during chemo. I am so glad I found this thread or I'd probably be freaking out lol
Amber 😊
0 -
That's too bad, Amber. Hope they are short-lived. What cycle are you on, may I ask? And so sorry about your dad. That must be hard on you and your family.
0 -
Amber, sorry to hear about your Dad, hope he is doing better and that you are managing the stress. I had not heard of many mouth sores on Ibrance, hope they disappear soon.
Pearlady, hope that you can get some rest, even a 1/2 hour nap can help get through the day sometimes.
Thanks, everyone, for your words of encouragement - good news is that my ABS Neutrophil count came back over 1 yesterday. I didn't do anything different, guess it just took a little over a week for it to come back, so I will be able to start round 3 today (3 days later than planned). Not sure if they will check the counts again before my appointment June 10. I forgot to ask whether they are using Neulasta or Neupogen with the Ibrance when needed, I will have to remember to ask him that next time.
Beautiful day, hope everyone can get out and enjoy!
0
