Ibrance (Palbociclib)
Comments
-
Chicagon, welcome! I always say that you will learn more here then any doctor could ever tell you. The ladies here are great, tons of support and great information!
0 -
I am going to have the Y 90 on all of my liver mets. I'm scheduled for April 6 for the mapping and April 13 for the first of 2 procedures. The next one will be in May.
The brain mri was negative for mets. Yay but did show that I have sinusitis. Now maybe I can get on meds to fix that.
0 -
Sandi~ I know Z has just lowered her doseage as well, her choice actually, side effects were a big reason I believe, You should speak to her about her experience so far, she's a great resource! I also had the harsh A/C chemo and it hit me like a train. I have spent the past five months trying to recover from the awful neuropathy and just over all flu like terrible feeling constantly. I can also agree that over time, it does get better. I have begun to run again and am very active. It took five months for me to even gain balance, get rid of the headaches and blurred vision and the feeling like my toes had been hard boiled. But honestly I feel a whole lot better! I have been on ibrance for 5 full months. I have barely any side effects, and each day I feel less pain and grow stronger. I am hopeful that means its working. Tumor markers are way way down but I am always skeptical of everything because we all know how much we all go through to be able to even catch a breath without worrying. Then you're off to another scan. I am scanning may 5th. I am hoping for good news. I keep you all close in prayer. Each and everyone of you is very special. We see things differently than most because of this awful disease. But for me in my life , it has made me love harder, laugh louder, and smell each and every flower I pass by, I watch the sky now, I hug more. I am living more~~but now I just live with cancer. Rest well ladies. ~M~
0 -
Hearing that some of you also have sinus problems helps me know it's not just me. I wish our MO's would read these forums so that they wouldn't just dismiss our small side effects. Grannax2, I wonder if those of us with sinus issues would have sinusitis show up on an MRI of the brain, not that I want one.
For those of you with low neutrophils, my MO did say that he still will stay at 125 mg of Ibrance with counts as low as .5 which surprised me. My neutrophils have always been fine so he wasn't anxious to reduce the dose. I'm just hoping that my next scan shows stable and reducing to 100mg helps me feel better. Each round to seems to take me longer to feel good on my week off. This time I still was tired on the 5th day off and today, my first of rd.#16 feels ok. I am exercising more and I know that helps but it still seems I just don't feel good most days. Of course maybe I'm just getting old. -:)
Dianarose, I was never offered $400.00 for research. When do they consider you finished with the research? My Ibrance just started coming direct from Pfizer in January 2017. Last year they came from the speciality pharmacy and were paid for by a charitable grant fund so I guess it wasn't considered research. I also heard a lot of women say that got these big welcome pill boxes which I never saw. Not that I care, it's just weird how different things are for some of us.
Faith (in the future)
0 -
Faith- I am going to call the guy next week and get more info. I got two welcome kits with the huge pill box. Must have got yours lol. I don't use the. They are way to big. The journal that came with it is useful though.
Since taking Ibrance I have the chills reall bad. Anyone else?
0 -
Dianarose, I don't remember chills in the beginning but I am always very cold now. I never go without at least two layers, usually three of clothing. Cami, tee shirt or blouse, then sweater or sweat shirt under my coat or jacket if I'm going out. Maybe only two layers in the summer. You don't have a fever for you. Chills can come with a fever. I was told to call the doctor with a fever over 100.5
I heard those pill boxes were way too big.
0 -
Faith- no fever just chills especially down my legs. The weather here in Maine doesn't help. Another foot of snow for Saturday. Everyone is cranky. All tired of cold and snow.
0 -
The Ibrance swag package is just weird. I got a little ball that I think I am supposed to squeeze with my hand in there. What does that have to do with MBC? It all got recycled the first time I got it. Then I got it again when I lowered my dose. Thanks?
Dianarose - i never get chills on this treatment. It may be the hormone suppression or it may be something else. Or it may be Ibrance. Keep all options in mind as you try to figure this stuff out.
Grannax - i think the local treatment is a good idea. Glad it is available to you. We have a thread on local treatment of liver mets. Many people, especially me, would like to know, play by play, how it goes. If you have a minute to write up why your doctor thinks it is a good idea for you, many will read it with interest.
>Z<
0 -
Sarovka- you are right. Could be from the hormone suppression shots as I started those the same day.
Get my first blood work today since I have started Ibrance. Praying it's good so I can continue.
0 -
Hi Everyone,
Has anyone every broken one of their ibrance capsules? I was shaking the capsule out of the bottle this morning and banged the pill bottle edge on the capsule and broke it The powder from inside the capsule spilled out. I threw out the broken capsule and took a new one from the bottle. I guess I will just finish the cycle one day early. I'm not too concerned about that but it has occurred to me before of what to do if you lose or break more than 1 capsule (or god forbid lose/damage the whole bottle). The pills are so expensive and it's not likely you can get replacements. Does anyone have an idea of what to do in such a scenario?
Thanks.
Cathy
0 -
Cathy, I think it's fine to stop a day or two early. In fact I had permission from my Onc. to stop several days early when we were traveling last summer so breaking a few capsules is probably not a problem. As for getting replacements, I think most doctors offices have some and will give it to you if necessary. Mine told me they had some to get me started if there was a delay in getting the IBrance. You might ask them about it at your next appointment just to put your mind at ease.
Dianarose, sending prayers for good blood work today. Hope all goes well.
Hugs, Faith (in the future)
0 -
Faith - Thanks that does put my mind at ease! I've dropped my letrozole pill a few times and it is a tiny bugger but I have been able to hunt it down. I have stopped taking my pills/filling my pill box while standing over the sink. That is flirting with disaster for sure! I've had a couple of close calls there. I never realized what catlike reflexes I have.
0 -
AnimalCrackers - LOL. These pills are so ridiculously expensive it is weird. I carry them around in my backpack because I like to take them mid-afternoon. I would never routinely carry $500 around in my backpack. I am sure one will get lost one day. In the larger scheme of things, no big deal really... 20 day cycle, what the heck.
>Z<
0 -
Hi Ladies,
I think I will be joining this merry band. I met with my oncologist yesterday and he is recommending Arimidex/Ibrance. I started the Arimidex today but it will be a few days before I have access to the Ibrance. I'm in Canada so it is not covered under our public health system. Fortunately I have good extended health coverage.
I need to work through the thread to figure out what I need to know in terms of side effects but thought I would let you know I am hear.
0 -
platelets were 182 and white count 4.5 so I am good for another week 😊
0 -
I would call the speciality pharmacy that you got it from, ask to speak to their pharmacist. I had a question so I called them and they helped answer it. ~M~
0 -
Welcome to our Canadian friend, Sadiesservant! I'm on the 7th cycle of Arimidex/Ibrance and doing well....fatigue being the biggest side effect. I had some mouth sores at first but natural Greek yogurt completely fixed that. I've found that taking the meds with my evening meal works for me. The only time I was nauseous was when I took them on an empty stomach.
I was scanned after 3 cycles and had a marked response. So many people here have had good results with minimal side effects and we expect you will too! You will also learn here that there are other drugs recently approved and some in the pipeline should this not be the perfect protocol for you.
So pop your little miracle pills (way more fun than Taxol!) and expect to start getting better right away, my friend! Here's to your next 16 years! God be with you and all your survivor sisters here and everywhere.
Love from Pat (23 year survivor)
0 -
Sadiesservant, Welcome to the Ibrance thread. I hope you find the combo of Arimidex and Ibrance keep you free any major SEs and that you can continue on it for many years. I was on Arimidex alone prior to Faslodex/Ibrance. Other than hot flashes, I had no problems. Ibrance has been pretty easy for me. Any SEs that I have experienced have been minor, and other than low blood counts they have not been consistent from one cycle to the next. I have had short episodes of itchy bumps on hands, stuffy nose, mouth sores, nose bleeds, a bit of nausea, and tingly scalp, but not all at the same time. The fact is that I feel great. I hope that you will feel that way, too.
Dianarose, It's good to hear that your counts are still up there. Don't be shocked if they go down during the cycle. That is normal. Hopefully, the will remain high enough to continue. I am in NH, and we are "only" expecting 5-10 inches of snow. I don't even want to think about it. I am ready to start digging in my garden!
SandiBeach, Many people have to reduce the dose of Ibrance at some point. My MO reduced mine to 100 mg after just one cycle because all my counts tanked. My neutrophil count went down to 400. It took 3 1/2 weeks for my counts to recover enough for me to start again at the lower dose. The good news is 3 months later my scans showed that my bone mets were stable and my liver mets were barely visible. For me, it seems that the lower dose is effective.
I just started cycle 7 of Ibrance today. Once again I needed a two week break before starting back on since my neutrophils were only 700 after a one week break. Amazingly, they were 1900 yesterday. This is two months in a row that my counts rebounded really well after two weeks. My bone marrow seems to have developed a new-found resilience.
Enjoy your day.
Lynne
0 -
Dianarose, yay on your platelets and white counts! I know they're breathing a sigh of relief after ole Adria! None of us who've had Adria miss her at all!
Micmel, I'll be scanning in early May too. I expect we'll both have good news!
Grannax, I'm excited that you will be able to zap those liver mets. I'll go and read up on the Y 90. I have so many friends who've done various surgeries and interventional radiology for mets with wonderful results. You and I can remember a time when toxic chemotherapy was the only thing offered but I'm so thankful for these wonderful new solutions.
For those of you with lung mets, I was just thinking about my friend, Judy. She had 4 tumors (BC mets) in her lungs that were successfully removed with surgery. I may be off a year or two but I think it's been 15 years since that surgery! No one here in Memphis would consider the surgery for her so she went to Dallas where a Dr. Blumenshein (sp?) successfully did it. It has never recurred in her lungs! When the cancer showed up in one spot on her rib, she also had that rib removed. Then she had brain mets for which she was successfully treated with Gamma Knife. That girl hasn't had treatment for BC in years!! We are all unique beings and we don't have to hang our hats on statistics, do we?!
My prayer today is for those folks working hard in labs to bring the next drugs to market and for the surgeons and radiologists who step outside the box! And may each of you find peace today in the path you're taking whether it's beginning Ibrance or moving on to something else. I'm so thankful God is still in the healing business!
0 -
Pat, Amen to your prayer
0 -
50sgirl, I'm also on cycle #7 of Arimidex/Ibrance. My oncologist is a big believer that 100mg is the perfect dose so that's what I've had since the beginning. My counts have consistently stayed just into the normal range. I know many doctors tend to give the dose used in the trials and I get that whole "evidence-based-medicine" thing, but quality of life is so important to consider. My doctor is older and much more concerned with that than some, Here's to bouncing bone marrow and good scans for you in the future!
0 -
first checkup after starting falsodex and ibrance menders up almost 80 pts. Ugh. Dr says this is typical during first cycle. Hope he's right. Anyone else have market spikes at first?
0 -
Cathy, that sounds like good advice from Faith. I do know that you're supposed to wash your hands before and after handling the capsules (I wonder why before??). It is a bit off-putting to have to wash your hands after handling something you've just put inside your body. So, you should probably clean up the spillage carefully and wash your hands, if that should happen again. Heaven forbid!
0 -
Welcome, Sadie!! And Dianarose, HOORAY!!
0 -
50'sgirl- I grew up in Dover. Are you near there? I think we are getting up to a foot of snow. It needs to stop. It will be May and still snow on the ground 😩. I too want to dig in the dirt.
Did anyone go straight from chemo right to Ibrance? My hair was growing now it seems like it's not. I so want hair back
0 -
Thank you for the greetings. I was happy to hear that someone else is on Arimidex and Ibrance. I primarily hear about this being offered with either Femara or Faslodex. I wondered if I was an outlier although I think my oncologist is fabulous and trust him implicitly.
I am also very encouraged by the responses you describe. I was diagnosed at the beginning of January with pleural effusion. I may have a nodule on my right lung (it wasn't clear as the it was largely collapsed) and possible bone mets in my hips but definitely have it in the pleural lining. I now have a PleurX Catheter but oh how I hope it will dry up soon! Taxol didn't do it but here's hoping this combo is the ticket.
So.. dumb question, what qualifies as a round for Ibrance? A month? I don't have the prescription yet but the cancer agency pharmacy called this afternoon when I was out so I will likely know more soon.
Pat (another one 😄)
0 -
sadieservent, welcome to the Ibrance thread. I'm kinda an old timer here in more ways than one being a 26+year survivor as well as being on rd#16 right now. I hope all of us get many years from this treatment. I consider a cycle or round is 28 days, 21 days of pills and 7 days off. As Pat G said, in the old days we only had bad Chemo. While not a walk in the park, this treatment is pretty easy. PatG, I'm glad to hear your Onc. believes that 100 mg works well. I'm hoping to reduce mine to that after my next scan in a couple of weeks assuming all is stable. Don't even want to think any other way.
Dianarose, happy to hear your numbers were pretty good. Some women are able to grow their hair on this treatment so try not to worry too much. I lost all my hair on Adriamyacin 25 years ago and it still is hard to think about. I had some thinning on this treatment but I'm taking 10mg. Biotin and it's getting thicker again. Some women don't have any problems at all, hopefully you'll be one of them.
Have a goodnight everyone.
Faith
0 -
Thanks Faith,
I had to chuckle about the hair issue. I thought my MO might recommend Xeloda so I spent some time on that thread. Someone said that at least I would get to keep my hair. All I could do was laugh as that ship has definitely sailed! Taxol took care of that. Lol.
0 -
hi all,
wondering if anyone else is having sinus/ runny nose issues & an extremely sore throat? I've had it on my off week for the last few cycles, but this time the sore throat is really bad. I've had it for almost a week now. I see my PCP on Wednesday but hoping for a bit of relief before that.
Also my MO mentioned that she would like me not to take zopeclone every night, so I asked about melatonin, nope not allowed, Rescue Sleep, nope not allowed.... both Femera & Palbo cause insomnia, so what would they like me to take? nothing I guess? I had 3 nights in a row of insomnia this week, I can't function like that. Your thoughts???
thanks, cheers, dee
0 -
Dianarose~. When I started ibrance I was just off abraxane and I was bald bald! And I was convinced it wasn't growing. Then slowly I started to notice a peach fuzz and it took months and I mean months. So be patient, I believe it just takes longer for the hair follicle to regenerate and remember what to do , I also know that since it's still chemo technically, that it just takes a little longer to kick in. Now my hair needs a hair cut its growing so much. I can brush it now and have actually had to use shampo and conditioner. So it's on its way for you as well.
Keeping you all close in prayer. ~M~
0
