Ibrance (Palbociclib)
Comments
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Grannax, I'm so sorry to hear about your latest adventure. It brought memories crashing back of having a Sigmoidoscopy while wide awake in exactly that position in 1974. I've had a lot of terrible things done but that wins the "Lifetime Most Awful Award". My rear end and my dignity send their condolences. I know having a Superstar granddaughter will bring much solace to you as you remember facing the world with the "Bare Necessities"! (Every time I have to go through a scan or unfun test, I keep a picture in my head of my granddaughter when she was 8 leading me in the song "Love Lifted Me". It gets me through every time!)
Oh, I just thought of something ALMOST worse than that Sigmoidoscopy ----- During the pre-op with my plastic surgeon before the TRAMflap reconstruction, I was standing in his office in nothing but purple paper bikini panties. He backed up across the room as he eyed how much tummy fat I had to work with. He then squatted right in front of me, squished that fat between his thumb and forefinger and said, "Boy, are you going to be glad to be rid of this." I'm still speechless. (But I AM glad to be rid of it.)
Dianarose, I'm so sorry about the trouble getting your medicine. I get mine from Kroger Pharmacy and they get it to me almost a week early each time. Can you ask to use Kroger? I email my nurse the day I run out and she puts the plan in action. I hope that can work for you. If you get to comment on the Ibrance ad, be sure to tell them how happy we are about "Julie's" perky self!
Bigbhome....WHAT?! THAT'S SO WONDERFUL! I've got to go and see if it's on the ASCO report for today! There has been much good news coming out of that conference for people with all kinds of cancer. I was so happy to see the report about the PARP inhibitor and laughed when I saw that it was about the only drug more expensive than Ibrance - $13,000 a month!
Every one of us is so worth it!! Love to all of you.
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Pat- we don't have a Kroger here in Maine. I am going to see about CVS mail order specialty drug company if this continues.
I have not seen the Ibrance ad. Got rid of DirecTv as they were so expensive. Funny that after three months of Ibrance I don't feel perky at all. Lol
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DianaRose - Bioplus Specialty Pharmacy has very very good at everything including managing my doctor's office, and that is saying something.
I am so glad Ibrance is doing well in the clinic. Very important. Often that does not happen. It's doing well for me, but not for others. Wish it was just over.
>Z<
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Dianarose, I wonder if it matters that you don't have Kroger locally since it's all done by mail. The number I call is 1-877-744-5675 if you want to check it out. I always get a live person. I hope you feel perkier soon, my friend.
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Grannax- Ugh! That is the worst medical exam position I can think of. How humiliating. Glad that is over for you-YUCK! I know the play is just going to be wonderful!
I can relate to everyone drowning in fatigue. We haven't had many sunny days here in Maine, so when today turned out to be gorgeous, I trucked on down to my veggie garden to do some planting. I was planting a flat of zinnias that I had started from seed. Every move was an effort. I tried kneeling, but I may have a torn meniscus, so that didn't work. I went to just bending over which required me to catch my breath every so often while constantly yawning. The arches of my feet started to ache. I was determined to finish this task, and I did. Came in to sit a bit with some iced tea, and fell asleep on the couch for two hours! It is my week off of the Ibrance, so that explains some of it. I am very grateful that I can get out and work in the garden, but the whole "new normal " thing takes some adjustment for sure.
How wonderful that Ibrance is exceeding expectations! Best news I've heard in a long time. May we all get long runs on it...
Love to each and may the force be with you during all procedures, scans, appointments, and daily activities. MJH
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I can almost count on days 22-26 on the Ibrance/Letrozole cycle to keep me mostly couch bound. But then it is over and my energy returns. My MO said I can run if I feel like it, just to listen to my body. Well, that is not happening..walking is fine.
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Wonderful news Bigbhome. That is likely where my MO is as he told me last week that he was going to a conference and then taking a short vacation. I will ask him about it when I see him. Thanks for this!
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Pat- thanks for the information. Just wondering how complicated it will be to switch over being on the copay program.
Jan- I'm in southern Maine and yes it was great to have a sunny day. I have more veggies to plant but garden is too wet. Hopefully what I planted already will come up and hasn't washed away to the neighbors yard.
I hope I get some energy soon. Our youngest is graduating next week and then we are giving him a party. I am trying to keep it simple with different salads and stuff on the grill.
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Wow, I am in awe of all of you gardeners. I live in a condo and can barely plant a container!
I am in day 2 of 4 watching my granddaughter. This is the first time she has been separated overnight from her momma. I think it is harder on momma! but I am in my "off week" so you guessed it, the fatigue and "Big D" hit me hard today. Bria is a very active little girl who will be 2 next Monday, so she doesn't always cooperate. And, she is in the middle of potty training and we are using this time to wean her off of breastfeeding. That part has gone fine as she hasn't even asked. We are surviving because she loves TV and the iPad. It is not the best parenting method, but I have to do it to survive. We do puzzles and books as long as she can fetch them! My husband works so he can't be as much help as he would like. The good thing is Bria lives here full-time so at least she is in her own space and her own bed. She cuddled up to cartoons this morning under her momma's blanket. She seems to understand ok when I tell her mommy is at camp, but she cried when we did Facetime last night. Probably won't do that again!
We all have daily struggles, and some of us have more difficult medical issues than others, but I feel fortunate to have found you all here. I enjoy reading your stories and your experiences as it provides me a connection with someone who I know understands.
Chris
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Hi everyone: I wanted to share my experience with Faslodex and Ibrance. Last October I was dx with mets to my bone marrow. I had been on femara for 33 months and graduated to the fas/ibrance combo. My MO started me on 75 mg 21 days on/7 off. I never made it past week 2; all my cell lines tanked. After two weeks off I started one week on and one week off. When I started my hgb was 6.8, I've been transfused 3x the last 12/13. My hgb hit 11.0 this week and all other cell lines have held steady. My MO shared this with a MO at Sloan-Kettering and he was all for the individualized approach. I get fatigued, so I just slow down. For the most part I'm able to have consecutive good days. Sharing my experience in case you'd like to open a discussion with your MO. Th
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Scout-a-bout, it sounds like you've had quite a time settling into what works for you. I'm thankful your oncologist is a thinker and didn't just throw the baby out with the bath water. It seems to me that yet another advantage of immunotherapy pills over IV chemo is the ability to slow things down and react early to problem blood counts. I look forward to hearing more updates of how you're doing and I wish you well!
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Intolight (Chris), caring for a potty training two year old for four days while taking Ibrance should qualify you for some giant award! It's amazing what you can do when your children need you, isn't it? My best to you and your girl.
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Chris - You are amazing! I was just getting ready to have a melt down and then I read your post! Amazing where we find the strength for our kids and grandkids!
I an still going to have my meltdown. Got bloodwork done yesterday. Neutrphils 0.61, lowest ever. RBC lowest ever. So tired I can't hardly see straight but the worst of it is, the mysterious stomach cramps are back again today and my migraine is back again today. Was supposed to do yoga Tuesday night and this morning. I so look forward to it, but the migraine makes it impossible! We are going to Siesta Key on Monday to meet up with our best friends, who are coming down from Ohio with their kids and grandkids and I wonder how I am going to be feeling then with such low counts. I could not stand to miss out on that. I am tired of being cooped up at home, not feeling well! This sucks! Today, I feel like saying enough is enough already! Don't worry I won't, I want to see my 2 Grandboys grow up! They are my heart! I will facetime them this evening for a pick me up. Thank you in advance for letting me rant. It does help once in awhile!
Hugs and prayers
C
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Hang in there C.......my week has been the same way. Don't understand why some days there is energy and others days not. Those grand babies are worth the fight. Enjoy your time with your friends. I pray for lots of energy and sending it your way.0
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My daughter who is a nurse said I should get some B12 shots. Not sure if it would interfere with Ibrance. She stir would help with the lack of energy. Does anyone get these shots?
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Diana rose - I get the occasional b shot. Worth a try. Onco approves.
K
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Thanks airline!
Hope tomorrow will be better for both of us.
Hugs and prayers
C
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Still having issues with Prime care/Walgreens to get my Ibrance. I don't want to switch until after I get them as I start back up again next week. I am sure they make a good chunk of $$ off them so their loss. Definitely switching for next time.
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Fatigue was winning today and then I saw this. I'm actually quite busy right now and so are you!
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Thanks Pat, I needed that today! Its been 4 days of extreme fatigue and 3 out of 4 days of migraines. God to remember cells are hard at work!
Hugs and prayers
C
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Thanks Pat, I needed that today! Its been 4 days of extreme fatigue and 3 out of 4 days of migraines. God to remember cells are hard at work!
Hugs and prayers
C
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Bigbhome (C), here's a big hug from me! I woke up to nausea and vomiting today. That's not a regular thing with this medicine...I just can't predict when it will happen. Sometimes makes it hard to plan a day away. I pray that your headache ends today and that both of us (and everybody else) gets out and about tomorrow.
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Bigbhome, I just happened to remember that my daughter rubs Peppermint essential oils on her forehead for migraines. Have you ever tried that?
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Cure-ious,
I know about the PFS median survival, but PF is not the same as NED, right? I'm wondering if there is any difference in survival time for those who get to NED.
Joelllen
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Joynert,
My scans were already showing major tumor shrinkage and loss of activity on Xeloda. Then, two of my bone mets started showing activity again. So I started Femera and Ibrance. My next scan, 3 months later, showed those 2 mets losing activity. By my next scan after that, pretty much everything was inactive.
Joellen
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Johor- that's great news. Thanks for the encouragement. My scan last summer was a total mess. Urologist said too much disease. The comments for the one in December was same amount of disease but radiologist said it looked less angry. MO hasn't mentioned doing another so I don't bring it up either.
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Thanks Pat, I will try that next time! So sorry for your nausea and vomiting! I sure hope you woke up today feeling better! So far so good for me.
That is awesome news jojo71! Absolutely awesome!
Dianarose, less angry sounds like a step in the right direction. Please don't bury your head in the sand though. Get another scan. There are lots more treatments out there that might work better for you.
Hugs and prayers
C
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So I had my scans on Monday and everything was stable to slightly better. My CA 27.29 continues to rise (another 1000) but my MO who will be on vacation next week, said we'd go with the scans so I'm starting cycle 4, still at 125.
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Joellen- Congratulations on great scans!!! You are still early with this combo, the Ibrance boost may be just getting started! I think the term Progression-free survival (PFS) is weird term, because from there you move on to progression, not death! NED versus stable sound preferable, but it seems in most cases it doesn't matter because NED doesn't mean absence of cancer,there are still transformed cells floating around that the scans can't pick up. Nobody can peer at the scans and tell the future. It would be helpful if you enter the information about your cancer subtype and prior treatments, so we can correlate how well you do on this drug combo with your particular situation. Happy Day!!
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Still a battle to get my Ibrance refill. Last week they said I needed a new prescription so I called the cancer center. Monday Prime care/Walgreens said they got it. Called several times during the week and was told it was being processed. Called this morning and was told they have only had the prescription a couple of days. I said no you got it Monday. Guy said like I said a couple of days. Guess math isn't his best subject. Then was told they were waiting for insurance approval. I asked to speak to the pharmacist. He said they never got a new prescription. OMG don't need this stress. Called the cancer center three hours ago and no one has called me back. It's my week off so I think I will call upon Dr. Barcardi and a splash of coke.
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