Ibrance (Palbociclib)
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Grannax I'm thrilled by your news! You (and IntoLight) may long ago recall that I very sadly reported that my CT scans seemed to show fast liver progression. I was devasted. Finally I had an MRI ... and it turned out to be a bunch of cysts which had moved around and grown. So many "false positives" that scare us practically to death. So hard to stay calm! But so often things are just fine!
P.S. Well, not exactly fine ... but you know what I mean. :-)
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Penny, you sound fine to me! Here's what my oncologist called the liver "thing" that scared me to death..."One too many Whopper Burgers" (AKA fat!).
PatG
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Penny-78 Ciaci and Joyner: thanks for the encouragement and kind words.
Penny-78: she is being given it in combination with Letrozole. She’s also getting a monthly shot of Xgeva for her bone mets
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thanks Penny, I was dx in Oct 2016 as stage 3c, lots of issues with MO and lack of care. There was a spot spine, but really never 100% confirmed mets. SO orig MO put me on Arimidex in Feb 2017 which worked right away had a nodule on my neck which disappeared within 2 weeks never to return. I switched medical groups and MO, at the time he said he would have put me on chemo in January but since she failed to do this if we have to have chemo later we can. So in March of 2018 tumor markers started rising, but cat scan show everything stable. In June they really jumped and he ordered ibrance. So yesterday was start of round 3 waiting for referral for cat scan.
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Hello everyone!! I just started on Ibrance a couple of days ago and Letrozole last Friday and so far no side effects from either. I had an Xgeva i injection on Thursday and it gave me a little tingling in my hands and lips for about an hour and that's it. Just wondering how long it took for any of you to notice side effects. I take the Ibrance and Letrozole in the morning with breakfast. Today will be my third day of the Ibrance and I am crossing my fingers that things will still keep going in the positive manner that they have so far. I was diagnosed as Stage IV from the get go so it's been rather disheartening for me as I have 6 beautiful children and a wonderful husband who need me to be around for a long time yet. My Oncologist and I have a plan in place to fight this in every way that we possibly can. I would also like to say that I am happy that I found this site as you are all so insightful and encouraging. It really makes things a little less stressful when you have others to talk to that are going through the motions as well.
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Welcome, Jane! We're sorry you have to be here but very glad to welcome you among us with open arms, support, and answers where we have them. Some of us (not I) are very knowledgeable, and all are kind and supportive. I'm on cycle 22 of Ibrance (I take mine in the morning immediately after breakfast), and my only side effect has been some fatigue. I've adjusted to that. Some have other SEs, but many do not. You may be among the lucky ones with few, if any, SE. Do remember to stay away from grapefruit, pomegranates, and blood oranges (not everyone is told the last two but all seem to be told about grapefruit), as they tend to increase the effect of the drug. And do take at the same time each day and eat just before you take your capsule; Pfizer says that Ibrance works better when taken with food. Hugs and best wishes to you as you begin your journey with us!
-Lynn
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Hello to all! Starting cycle 23 of Letrozole/ Ibrance. Next set of scans Oct 22. So far, blood work and ca15.3 fine. I drop in at nearest hospital for labs..all prescriptions written in advance. Camping across country with DH. He wants me to live forever, so we don't talk about Mr. C. He needs this vacation, too. Just hanging out like we normally do.
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Hi Jane! I am on cycle 3, 125 mg Ibrance along with Letrozole. The only side effect I have experienced is slight fatigue, a nap helps but it is not constant, seems to come and go throughout the 21 days, the 7 days off seem to be just fine. I work full time, treatment has not disrupted my quality of life. Now I do (and its common) have low blood counts but nothing I physically notice, we just need to be more cognizant (like around flu season). Sending positive thoughts to you!
SandiBeach, enjoy! We just got back from 7 days of bliss in the Colorado mountains, fishing, golfing (well my husband golfed, I just hacked it up) hiking and soaking in the hot springs. We like to ski but this was the first time to visit during “summer" and its gorgeous. Saw a bear, moose, lots of magpies and mule deer. Us Texans get excited when we see wild stuff like that.
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Jane...I'm on month 6 of Ibrance/Letrozole and I get an x-geva injection every month. I take the Letrozole with my lunch and the Ibrance with my dinner. I was told by my pharmacist to be sure to take these meds at approximately the same time each day. I have never had any side effects from any of these meds. I'm having scans next Friday. I guess I'll find out if the combo is working this time around. This is my second go of this combination, The first time it failed me. I had to go back on chemo infusions, due to mets found in my bone marrow. So, I'm praying that this time around is working. I feel good, so I guess that's a good sign. My only problem is neuropathy from my Taxol infusions. It's quite debilitating and I've been going to PT twice a week since July. Other than this, I feel great. Wishing you well.
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Sandi, your trip sounds great! Updates and photos, please! A question: how do you order Ibrance in advance? I don't believe that Medicare will allow that, because of the cost. They would let me change the delivery address, however. I can't think of how I would get faslodex shots, though.
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Leapfrog, hearing you're doing well does my heart good. Having your own place is a great way to re-establish boundaries!
Grannax, we saved your seat so come on in and let us know how you're doing.
Jane, I'm finishing cycle 14 of 125mg Ibrance. If I remember correctly, SE's started to kick in around the 3rd week, which included varying degrees of stomach upset, aches and pains that would flare up and die down, and mouth sores. These eased over time and I got some great advice from folks here on tips to manage. Longer term SE's include constipation, hair thinning, and occasional neuropathy in feet/hands. Look, this is a heavy drug doing some heavy lifting, so some SE's are to be expected. But most of us here manage fine and are grateful to be on it. Just stay with us, ask when things come up, and you'll do well.
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grannax- what great news!!!
jane- welcome! i just started my 8th cycle and had scans last week. when i went to my MO to get the results he told me that i’m NEAD. this was such great news but i had to explain to friends and families that i will always be on some kind of treatment and that cancer is sneaky and can find ways around the medicine. i hated being Debbie downer but i wanted them to understand that i am not cured. but i feel very blessed that the medicine worked so fast. i pray that it does the same thing for all of you
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Wow!!! Thanks so much to all of you for the positive responses to my questions!! You all really know how to make a gal feel welcomed and I appreciate it so very much!!! I will definitely stay in touch with how things go for me. I was stage IV from my initial diagnoses so it was pretty overwhelming at first. I am just happy to be on treatments and am crossing my fingers that it does the trick for me
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Gather 'round ye olde soapbox, friends:
Just because the literature says we'll always be metastatic and we'll always be on treatment doesn't make it so. Sorry to repeat myself but even before our amazing Ibrance, people with MBC got well and have had many years off treatment, never to have MBC show up again. I know this because some of them are my friends. So if they could get well after taking those old chemotherapy drugs, why could you and I not get completely well on current drugs like Ibrance, not to mention the new ones that are on the horizon?
I don't think this is a Pie in the Sky dream because I've seen how many people here have achieved NEAD status. Keep passing on your stories because that hope is as good as medicine to others. We've said it before: We are Pioneers! If there had even been one long term MBC survivor, that would be enough for each of us to know the next one could be us! So, here's the deal...I'll be the next one and you be the one after that and before you know it, the statistics will be defeated.
Statistics Schmatistics!
Love from PatG
(Off the soapbox and back to the Bama-Ole Miss game. It's a good one!)
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Crazeejane, your name is enough to make me love you! You're going to rock this Ibrance because fatigue is the main annoying side effect and a woman with 6 kids doesn't have time to be fatigued! (I bet you've never even been to the bathroom by yourself, girlfriend!) Welcome to our fun circle where joy keeps us alive and kicking!
October 2 is my Ibrance/Arimidex/XGeva 2-Year Anniversary. Widespread bone mets have been remarkably transformed into healed lesions. In February, I'll be 25 years out from a first Stage 2 BC. In March, I'll be 7 years out from my first metastatic diagnosis.
Love from PatG
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Crazeejane is actually a nickname given to me by my friends as my middle name is Jane and I tend to get a bit wild and crazy at times which I feel keeps me young. I always say my body may age but no matter what I will ALWAYS have a fresh young mind! My first name is actually Crystle however I find Crazeejane to be rather fitting at this point in my life because there are actually days when I feel that I just may be going crazy! PatgMC I appreciate your kindness more than you could ever know and yes having 6 children definitely has kept me on my toes for many years. They are my reason for living along with my pretty kick ass husband! Much love to you from me!
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Hi.. I’m a newbie from the UK, I sooooo need your positive practical outlook ladies, just started ibrance for MBC, bone Mets... not too much trouble so far... I do have pain in the largest met that has increased with the drugs.. it’s freaking me out but have a scan in 5 weeks to see what’s going on in there... I started in 2009 with primary, single met in sternum removed in 2013, 2018 3 bone Mets, 1 gone thanks to a hip replacement... 2 more lurking... take care lovely ladies xx
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Hi all - just got back from my first International travel work trip since being diagnosed. I was in switzerland and several cities in germany (NettaGER - I waved to you when I landed in Frankfurt!) and I’m proud to say it went better than expected in terms of fatigue and not getting any infections. I was a bit worried as these trips are generally all day meetings, long evening dinners, plant/warehouse tours etc. I am tired now but I made it through!
Just catching up on a week of posts... welcome to the newbies and congrats to those with stable scans! GrannyX your MRI news is also really encouraging and yay that you are still doing your trip! Joyner - so glad you didn’t float away! Leapfrog - so glad to hear the pride in your words as you settle into your new life on your own!
Missed you all - Lauren
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Welcome to you Les-43! I have read here that it is quite common to have pain in mets as the drugs start to break down the cancer in the bones and shed those nasty cells. (This, in turn, can also cause a rise in tumor markers for those with that symptom early in your Ibrance dance). Here’s hoping that’s exactly what you are experiencing!
Hugs,
Lauren
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Joyner I'm waving to you from the other side of the bay. It's so beautiful here, sitting on the couch drinking coffee and watching the boats and birds. Did the storm hit your part of Virginia? I guess you'll be going back to continue your epic sailboat trip soon.
Ladies I'm leaning towards going back on Ibrance again instead of changing to AA. The only reason I can think of, to explain why the area in the PET did not show up on the MRI, is that it's NOT a met. I will be scanned again at the end of October, then the truth will reveal itself, one way or the other.
I think we will explore the island today. It's not even raining!
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Nonahope, I didn't know they could put you on the same treatment twice. I will ask my MO about that since Ibrance/letrozole failed after 7 cycles. I was getting used to minimal side effects and the idea of long-term treatment and started making plans. You know what they say, if you want to make God laugh, tell him your plans! Good luck on this go-round
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i am fairly new to this forum. I am on Ibrance 100 and extamastane. I have breast cancer in my bones and in my skin.having a lot of pain in my fingers. Last CT/Pet Scan showed small decrease in activity .ANYone taking Ibrance for skin?
Thanks.
Joan
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Joan, welcome! I don't have any experience with your question so will leave that to others.
Holmes, HOORAY on NEAD!!
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Joan, from my experience I would expect that the pain in your fingers is from your hormone therapy. May I suggest taking Turmeric? Mine is MegaFood Turmeric for Joints which I order from Amazon or buy at Whole Foods. It definitely makes a difference. I'm glad Ibrance is working for you!
Love from PatG
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I have a question for you all-
It is coming to that time of year for influenza vaccines for the upcoming flu season. I have gotten a flu vaccine every year for several years. Just the kind you get at the local pharmacy, health department, etc. I always just thought that there were one type of vaccine that the CDC comes out with for the upcoming season and the strain they think will be going around. The other day I was watching TV and a commercial came on for a certain type of flu vaccine for seniors. "High Dose" I think they said. So I got to thinking, since we have cancer and immunocompromised from our treatments should we have a different type of vaccine- High Dose?? I know we say that with Ibrance use and low white counts that increased infection risk is not too much of a problem. I called my MO office and ask the nurse to ask the doc if I should get a different type of flu vaccine. They called back and said the MO said to just get the "regular" vaccine.
What are your thoughts and experiences??? And for the scientifically minded among us---what is the "High Dose" vaccine that is advertised and how is it different from the regular one???
I plan on getting my "regular" vaccine in the next couple of weeks. Praying this fall/winter season is a healthy one.
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My oncologist told me not to have a flu shot. I'm on Ibrance too and he said my immune system would not cope. So far, my numbers have been good enough to continue Ibrance, knock wood, but he has consistently told me to stay away from crowds, stores, kids, and anyone who seems unwell. I haven't missed a year of the flu vaccine for a long, long time and it makes me uneasy.
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Candy, just last week I saw my onc and she told me to get the "high dose" because I am over 65. So I did. I also received a flu shot the last 2 years I have been on Ibrance. I have had no problems at all--not even sore at the injection site. I get a flu shot every year especially since I used to teach elementary students, then university students, and I now have a toddler living in my home. Interesting...
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Lauren, welcome back! I'm sure you're tired but buoyed by the fact that you were able to keep up with the travel demands.
Les-43, pre-treatment, I experienced met pain in my hip and sternum. Once I started I/F, I continued to have pain for the next couple of months. My 3-month scan showed area was stable, and around that time the pain subsided. I remember thinking at one point, oh yeah, I'm not in pain! Since then bone mets are stable or even smaller. I've been told, and understand from being around here for awhile, that this cocktail can take months to work. Also, pain seems to come and go, both in met and non-met area (hence the name Ibrance dance.) So settle in for the ride, exercise when you can, and know you're doing the best possible you can right now.
Joan44, I can remember a lovely friend, Amarantha, that posted about skin mets. I think she's on the Halavan thread now, and there might be a thread specifically for skin mets. But there's no reason this combo won't work for you.
Candy, I'm seeing MO tomorrow and will try to remember to ask about flu shot.
Happy Sunday to all!
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I’m 41 and never had the flu shot until now - my MO said I needed it now that I AM on Ibrance.
MuddlingThrough - that sounds like an odd recommendation from your MO. Maybe double check them on that one!
The high dose is for folks over 65 yrs old. I asked about getting that one last year and was told I definitely did not need it. I haven’t looked into the research as to why yet - I’d love to know
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My oncologist definitely recommends the flu shot each year and this year I'll be getting a pneumonia shot since the big PNEU almost killed me last winter!
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