Ibrance (Palbociclib)
Comments
-
LynnFish, when you say "after a significant spread six-months post Ibrance," are you saying that you had significant progression after six months of taking Ibrance but kept on taking it and are getting such good results after 26 months?
If so, great!
0 -
Great pep talk, Lynn!
0 -
JFV- you need to wait until you are off the antibiotics at least a week or so before you are retested or you might get a false negative. I have chronic infections due to my naphostomy tube. I am constantly on antibiotics. Gets old
0 -
JFV - I tested before I went off antibiotics, but I believe DianaRose is right. Something to ask the doc.
>Z<
0 -
On my first cycle of Ibrance and my scalp is itchy!! Didn't think too much of it, but just noticed that a bunch of hair has fallen out from the itchy areas. Should I expect this to get worse through additional cycles? Anything I can do to slow this down?? (I also just started Lupron and Letrozole, but assume it's from Ibrance since it's a listed side effect)
Also while I'm asking for advice -- anyone take probiotics? Recommendations? My stomach seems to hurt a little from the Ibrance and was thinking maybe I should reintroduce some good gut bacteria.
Hope Ibrance is doing an awesome job on these cancer cells too! It's certainly wrecking havoc elsewhere
0 -
flight4two, I can't help you with the hair thing as mine didn't fully come back after Carbo/Taxol in 2012. I just wear a wig and roll with it!
Itchiness comes and goes on my lower legs. You will learn on here that side effects vary and you may not have the same ones every month. I just take them as a reminder that it's working!
About the tummy: I have found taking Ibrance with a meal in the evening works for me. The one time I waited a half hour to eat after taking, I ended up with a belly ache, nausea and diarrhea (the only time I've had that in 9 cycles). I eat Stonyfield natural yogurt which has probiotics. Keeps me from getting any mouth sores too. I find I do best when I eat several small meals during the day; otherwise, I tend to have blood sugar crashes.
I'm praying that your Ibrance has already gone to town on those cancer cells and that you'll have the great results many of us have had.
God bless you, Ibrance sister!
0 -
Fight4Two - I had scalp pain/burn but no hair loss. It was one of the things that drove me to lower my dose to 100mg after cycle 15. Personally, I would not reduce the dose early on ... I would soldier through tough side effects in order to get the maximum reduction in tumor load possible. Usually happens in cycles 2-9 ... but it can continue for up to a year. After that I figure (hope) this is more of a lifestyle and I need to be comfortable. That is my thinking for myself so I reduced my dose after cycle 15 despite fine blood work and some objection from my doctor.
We each metabolize this drug differently. You may be getting a very high effective dose and if so a dose reduction right now could be fine. Watch the side effects. Follow your gut. Overall health should not be compromised on a long term treatment like this one.
Probiotics are awesome. This article appears to be about how bifdo bacterium enable PD-L1 inhibitors to work in mice; however, if you read the article you find that bifdo bacterium, alone, were as effective at fighting cancer in mice as a PD-L1 inhibitor. I take bifdo bacterium probiotics alternately with any random high quailty probiotic I find a the health food store (because you do want some variety). I also make yogurt with bifdo bacterium, which is super tasty.
I am a beta tester with Viome, a company that looks at treating disease by maintaining gut health. I get my flora tested every 3-4 months ... but the main value has been the discussions with the doctors and the beta testers about gut flora and health. Very interesting and compelling.
So, probiotics ... yes.
Biotin seems to help women with hair loss ... I do take it but I can't say that is what is preventing my hair loss.
>Z<
0 -
Agree with the yogurt!! Probiotics!! I have yogurt with probiotics every day helps my stomach a lot and I haven't had any problems with mouth sores. Slight soreness but always dissipates during the month. Had slight sore scalp the first two months of being on ibrance, but no real problems. My issues are mostly with the hormonal anastrazole! I am starting month 7 this week & I have a full head of hair and thank god no thinning as of yet. Keeping fingers crossed !! Hope you get many many years from ibrance. ~M~
0 -
fight42 - my hair started thinning at about the 8th cycle. But I really noticed a big difference after spending a week swimming in the ocean and pool during last summer. I think the hair was in such a weakened state that the chlorine and salt water made a mess of it. However, it now seems to be doing a little better and I think more is starting to come back. You might just want to be extra careful if you plan on swimming this summer.
0 -
Arghh...I think I have caught a cold from my 2-year-old granddaughter. I am so careful, but of course living in the same house makes it tough. And since she is contagious before the obvious signs show, it is tough to not have contact. I wash and sanitize most of the time, and I wear a mask when she is sick, but sometimes it is unavoidable. Any suggestions out there how to handle it best? I am always looking for good solutions.
0 -
IntoLight-
Have you ever tried Zicam? It works for me. At the very first sign of an impending cold, I start using it (I like the oral spray) every four hours (round the clock, if I happen to wake up in the middle of the night) and then for a couple of days after the cold appears to be over. It does seem to diminish the strength and length of the cold. Hope you feel better!
0 -
Hi ladies,
Day 6 into cycle 2. Have been very tired last couple of days but no other issues. Under duress my husband dragged me out for a long walk last night. I felt really good afterwards even though I moaned at the start! This morning I walked my son to school and walked for 90mins afterwards. I feel great and it has lifted my mood. Yes...everyone knows this but I'm so glad I got myself off out of the house on my own! That bit is the hardest part for me.
Interesting about the probiotics. I bought some yesterday so will add them in. I have been researching some recipes that are nourishing and will help me lose the weight I gained on chemo. I came across the Healthy Gut Diet which i have ordered on amazon. The doctor behind the book is also a broadcaster and I have heard him talk about health and diet. Clever guts There was a article about his book and a pull out section in the newspaper below (The newspaper is a bit of a rag so don't judge me!) But just bought it for the recipes which look very nice and I enjoy cooking...when I have the energy. At very least the recipes are healthy and nutritious.
0 -
As well as Zicam, you can just take zinc and vitamin C. That's basically what Zicam is, just zinc and fillers. And for me it does work within a couple of days.
0 -
Just had full set of scans at 22 months following extensive bone mets, and it's all clear! So yippee, keep the faith, these drugs are strong...
0 -
Interesting that Z and I are both ER+, PR-, HER2-negative and still responding at around the two year mark, so it does seem that the ER+/PR- cancer phenotype can do OK with the Ibrance-Femara combo...
0 -
cure-ious- that is great news and very encouraging!! I hope it does the same for belly mets.
0 -
Congrats, Cure-ious! For those of us who are new, you're providing a great example of what's possible.
0 -
Hallelujah, Cure-ious....fabulous news and so uplifting for all of us!! So happy for you!!
0 -
I just saw that "Julie" Ibrance commercial again. Boy Julie is a busy bee and she looks like she's doing a ok to me. Clearly Julie is an actress because half way through my day, I have to sit down for two hours to put more gasoline in my tank and re charge my sleep for 9 hours. And I am not springing out of bed into my wonderful sunny day to gallop around in my yard with my dog so carefree. I have to get the kinks out of my bones, and remember to feel my feet for the first three minutes, I just wish they would make the commercial more realistic and believable. Cure-ious~. I think your news is fantastic, from the bottom of my heart. Congratulations! Keep going!! Big High five!! ~M~
0 -
Yahoo Cure-ious! So happy for you!
0 -
Cure-ious: Wonderful news! I am so happy for you!!!
0 -
Cure-ious, I am going to hop up from here and dance and pretend I'm holding hands with every amazing woman on this thread! (I'll grab "Julie's" hand too.) I'm throwing pretend confetti and thanking God. Getting results from my PET on Monday and I'm planning to receive identical news, Cure-ious!
Tomorrow, my 13 year old granddaughter and I will turn in paintings for an art show at Memphis Botanic Garden. She's been allowed to join our art league and is so excited. I'm thankful to God for Ibrance which lets me be in treatment, stifle this cancer and live a life with such joyful moments. Yes, there is fatigue but oh, so much joy! Yesterday would have been my mother's 97th birthday. She died at 56 from malignant melanoma for which there was no treatment. I now know several people who have been cured of what she had through immunotherapy. Some days, my faith in Ibrance can get shaky but today, because of many of you, it is renewed.
Here's to nothing but good news for all of you, my sisters!
0 -
Thanks to all! This time when I was on the scanner, I looked up at the ceiling and saw all your faces/avatars looking back at me in the room- then I imagined each of you being on the scanner, and then I was looking down along with the crowd, all hoping for good results. My original MO died of pancreatic cancer just a few months after diagnosis, so I know that nobody is excused for good behavior. But the longer we can hang on, the closer we get to potentially game-changing drug combinations to extend our lives to the point where we die of something, anything, else..
0 -
Cure-ious, I told my husband I'd get hit by a bus on the hospital property so he can sue and be rich when I'm gone! And he has to promise to point out in my obituary, "She did NOT die from breast cancer."
0 -
Hi All.
I've remained quiet on the subject but must admit I am a bit more like Julie. After several really crappy months with pleural effusion, gasping for breath at times, I feel truly marvellous. I am 5 pills into round two of Ibrance, albeit at a reduced dose, combined with Arimidex and things are going well. My lung fluid was at its lowest level ever on Monday and, although I felt a bit like I was swimming upstream today with the fatigue, I feel like there has been a change in my chest. It may be pure imagination but there has been a tightness that is gone and with it, that darned cough!
It may be completely premature but I am revelling in the moment! And BTW, working full time and walk my dog a couple if times a day. My hope is that we can all be like Julie!
Hugs to all.
0 -
oh cure-ious, this is such great and uplifting news!! So happy for you!!
I had to stop my first cycle 1 week early due to low neutrophils, and now that they've rebounded, I'm still on the sidelines due to low platelets!!!! Platelets weren't even on my radar because everything I read about was regarding the neutrophils. Any advice on how to get my platelets up? I noticed they have not increased at all during the 6 days I've been off Ibrance. I'm very eager to get back on this amazing drug and don't know how to get my blood to behave.
Thanks all for the thumbs up and advice on the probiotics!
0 -
Sadiesservant, I'm so happy to hear that about your lung fluid! I hope you continue revelling in the moment....it's really all anyone has, isn't it?! And working full time? You go, girl! Here's to the Julies!
0 -
Hi, Fight4two, I'm so sorry to hear about the low platelets. I don't have experience with this (so far) but saw this website with remedies that I hope is helpful:
http://www.rapidhomeremedies.com/increase-a-low-pl...
You are in my prayers.
0 -
Cure-ions, That's great news. I can add a bit to the good news also as I know it gives the newbies encouragement. I'm on rd.#18 this week at 125mg. and my last scan in April was stable or reduced uptake, so I consider that good news. I haven't seen more than a couple of seconds of "Julie" but while I feel better than I did when I started this treatment, I'm not bouncing out of bed. However, I am managing to live a pretty full life for a 77yr. old grandmother. Two weekends ago we drove a five hour round trip for one DGD's graduation, then last week we flew 3000 miles to see another DGD graduate and on Friday we have a six hr. drive one way for a DGS's graduation. Three in three weeks, in three different cities, whew! We are also planning a trip to Italy in the fall. So life does go on, it's not always easy, but I'm grateful for all the memories my family will have while I'm still here to enjoy them.
A page or two back, I read the mention of Olivia Newton John's return of BC to the sacrum after 25 years, well, that's me too. After having BC in 1991, it came back at the end of 2015. So, I don't know if they will ever find a real cure. I sure hope so as we have three daughters and six granddaughters as well as a son and four grandsons I am thinking I just might live long enough to die of something else though.
Hugs and prayers for all,
Faith (in the future)
0 -
Faith, thank you for your encouraging news. I have been on 125 mg for 13 rounds now and I am still going strong. My mets (both extensive bone and liver) resolved 5 months ago and I have remained stable ever sense. It is encouraging to hear about your trips. I flew from CA to MO by myself 2 months ago to meet my new grandson and did well by myself. Lately I have begun to slow down, but it is more just being tired. You all encourage me to get out there and party!
0
