Ibrance (Palbociclib)
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Pat, wanderful article. Sometimes is hard for me to put my feelings in words and she did it so good. I already sent it to my best friend, who could not understand me. Now I am waiting for response
Thereishope , I am on 100 g Ibrance , after the first cycle on 125. My blood counts were too low. The dose reduction made big difference. I am taking mash Maitake D exstrat and I am not sure which one actually helped
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Jaycee, I'll be thinking about you tomorrow doing scans together! It's been 8 months since my last scan and my onc said the same - no symptoms so we just carry on with the same treatment. I also have to wait until my appt to get results. My appt is 1 week. If scan determines treatment.. why the heck are you waiting 3 weeks.. ugh It would be awful. You're not complaining.. this is a safe place to vent...I hear you!
I may have to start wearing the same clothes.. but only if I have good results.
Hobbes I would love to get a call from my onc.. that would be wonderful!
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Thanks all for your info the dosage. It looks like most of you are on 100 mg. I was disappointed that I may not get my count high enough to continue at 125 mg next week. My initial thought was to try the highest dosage for the first 3 cycles and see how things are after the scan. I figured if there is progression, then I can't blame it on the dosage not being strong enough. Glad to hear that 100 mg still seems quite effective as well. I am also working on drinking a lot of water as I am concerned about all the medication's long term effects on the liver and kidney.
In hope to boost the immune system, I also started using essential oils as suggested by a friend. Not sure if it's helpful at all but I've added lavender as part of the night time routine. This may help some of you who have issues with getting a good night sleep.
I am expected to do scans every 3 months and my doctor would schedule an appt with me as soon as possible after the scan for me to get my results. When I was in the process of being diagnosed, she would call me personally to get me results over the phone. I am thankful for that but also wondered why she didn't request any scans for 6 years from my first diagnosis.
Hoping to hear good results from a few of you getting your scans soon! Sending positive energy all around!
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That was a very helpful article. I put it on facebook, though I hope it doesn't scare away too many of my friends. It is true, a lot of fb comments tend toward "you've got this", or "you'll beat it" or "have you tried having your aura cleaned" or whatever, and I have to keep explaining ... um, sorry to tell you but there is no beating this", or please spare me the crackpot theories...
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Hi, all..
I want to reassure anyone with concerns about the effectiveness of less than 125 mg doses of Ibrance that I just finished cycle 35, with the last 32 cycles at 75 mg....On that dose I complete every full cycle and start the next cycle on time with no delay due to low counts. My day 14 WBC/ANC were too low on both 125 and 100 mg doses that I never could complete a 21 day course of the medication, and so 75 mg it was-- I was very reluctant and concerned when my onc called me nearly two and a half years ago to tell me that we were reducing the dose, but it has been a fine move for me....bonus is that I have very minimal side effects.
My onc is a researcher, and asked a research pharmacist about the benefits vs drawbacks of fewer days at a higher dose vs a full cycle at the lowest dose, and his answer was an unequivocal take the dose that you can complete a full cycle and keep the time off it as short as possible--so full cycles at lower doses were, from a cell biology standpoint, superior to shorter duration of higher doses, especially if the "off" time went longer than a week....
Here's to hoping for 35+ more cycles for all of us.
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Thanks Pat for sending the thoughtful article. I am sure we all have stories.
I am still in New Orleans so have limited internet but am trying to keep up with you all. It is interesting watching a small group of caring strangers (those who are working with my DH these couple of days) who know my Diagnosis but don't know what to say to a stranger. Most of the conversation was "what did I used to do before I 'retired'?" My life is not over people, but thank you for not ignoring me completely. So we carry on.
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Oh, amarantha, if I had only thought in 1994 to have my aura cleaned, I'd be home-free!
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Husband11, have you tried Honokiol? I'm new to the forum but I wanted to respond because I came across this discussion, and I started taking Honokiol and it relaxes you and helps with sleep. But you cannot mix it with sleeping pills, Valium or muscle relaxer, etc. And you also shouldn't drink any alcohol while taking it.
I got mine from econugenics because it has 98% honokiol. It doesn't seem prudent to take a lower dose.
It's also supposed to have cancer killing properties and there's a site that discusses for active cancer, work your way up to four, four times a day. Right now I'm on three, three times a day.
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Hobbes....I'll be thinking of you awaiting your scan results. Surely they must be good, the last one being so great. Fingers are crossed xx
I'm on a trial in Australia which mimics the Paloma trial but no control group so my MO scans me every three months. He usually schedules the scan for about a week before my next visit so I never have to wait long for results. I wait until I see him, usually no more than a week to ten days. I'm happy to live in Denial Land till the visit.
So sorry about your arm Jaycee and very best of luck with the scan xx
Hahaha PatGMc. Love the story. I'll join the Victims Club and pretend to be stricken!! Now, where did I leave that velcro. I know I have some.....
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I do not post much but have followed these wonderful threads and you awesome women since sometime last year.
I had a paranoia concern a couple of weeks ago a changed my screen name and deleted personal data until I was comfortable. What's up with that? Probably one of my many personal crazies.
Anyway, chemo brain and I know longer know what we posted where (I could look it up but that too would be in the nusto range) but I had progression after 10+ months on Taxol and now am starting on Faslodex and Ibrance. Had my first very slooooow shots Monday and will down my first Ibrance tab after my GDs third birthday party tomorrow.
The main thing I want to mention is that the imaging facility I use in the San Diego area has a narrative of the scans available to me to download 4 days after the scan. I saw the narrative on my last scan that showed growth in most liver mets and in the recurrence on the left chest wall and a brand new baby met in my right lung the day before my appt with my MO and was able to have a reasonable conversation with her about how to proceed. I would really hate to have this dumped on my at the MO appt even though I usually have run through many what ifs in advance. My playground brain crossed its fingers but my old lady brain said "your TMs are creaping up, you know what this means”
Much love to you all. Thank you all for sharing. It has made a world of difference to me. Sylvia
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Ars68, glad those Faslodex shots were slow (best practice) and that you're about to down that first Ibrance. I'm on cycle 13 and stable. At first I couldn't help thinking of those orange capsules as the enemy, but now I embrace them as my saviors! Onward!
Regarding well-intentioned (I assume) people: I have limited the number of people who know about my MBC, both for professional reasons ("Well, you surely can't list your house with HER...her shelf-life ain't looking so good") or because I just don't want to be treated as a patient. That's both a good and a bad thing, as many of you know: it would be nice sometimes to be able to fall back on "I'm feeling tired this afternoon and can't do that", but I cannot, because they wouldn't know why I was tired! Pat, I can't even play the Velcro card! Overall, I've found that this has worked well for me. If and when things progress, they'll know soon enough.
Hugs to all, especially to the newbies...
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Hey ladies and DH's,
PatMG I loved the article and shared it on another thread. I posted it on my FB page and not one person read it. I swear I could fill in the scenarios with a few minor alterations and first and last names. Thanks again. The MBC survivors all enjoyed the article; a lot of feedback.
JayCee49 I had my last scan October 4th. My Onc ordered one for me for Friday but when I called the time didn't work for my schedule. I scheduled it for Feb 21st. Now to try to put it out of my mind until then.
Tanya
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Hi I'm going to be starting Ibrance as soon as it arrives. I did 5 rounds on Kisqali and my liver enzymes went through the roof and so I had to switch. Kisqali/Femara plus my injections did shrink everything. Hoping Ibrance will also be good stuff and hoping that my body can take it!I
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tinyturtle, I'm saying a prayer right now that Kisqali got this "kill-the-cancer show" on the road for you and Ibrance will finish it off! Welcome to our little Ibrance Dance Group where we see amazing results every day. We have some folks being scanned today and we're awaiting their good results!
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I will be starting ibrance 2/2018. Just curious to how well it went with you? I am hoping well.
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Hi Releasethecure! Welcome to the group, although I am sure you don't really want to be here. Your posting reminds me of my very first post here, not too long ago. I was very scared of the journey ahead and didn't know what to expect with this treatment. I was diagnosed after being cancer free for almost 7 years from my first diagnosis at the age of 34. At the end of 2017, I was told that it came back and I was devastated. This wonderful group of ladies have helped me conquer my fears, answered my questions, and put my mind at ease. I am sure you will find the same support here.
Compared to many veterans here in the group, I am a newbie. I just finished my first 3 weeks on Ibrance. I remember being super scared when i took that very first pill. Side effects have been very minimal for me though. No mouth sores, very little fatigue (I take a short 15 min nap during the day) and carry on with my daily activities, no nausea, or any other side effects worth mentioning. I am not sure if the side effects are accumulative as I go through my later cycles, but so far, I feel quite "normal". My white blood cell count is low though at 0.8 after 3 weeks on the drug. I am waiting for it to go back up to 1 before being able to start the next cycle. The ladies here have advised me to try a lower dosage at 100 mg. I am thinking that's a better alternative and long term treatment plan.
I think others in the group have experienced more noticeable side effects, but they seem to be quite manageable.
We are all hoping to be able to stay on this med for a long long time, while fighting off these buggers. I am hopeful that there will be a cure!
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Welcome to this forum, tinyturtle and releasethecure. I hope Ibrance is kind to you and is effective for years and years. Many ladies here have had such positive results. I am on cycle 8 and doing well. It is not a straight-line, some days are better than others, some cycles are better than others. But overall very doable. And so, so much better than pre-diagnosis. Good luck, and come here with any questions you might have. Odds are, someone has been though it and can offer advice.
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Hi everyone, I'll be back later to read your posts. I've just read this article and will leave it with you for your interest.
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I saw my MO today and blood work done yesterday has my neutrophils at 1.08 and still 4 days until I start cycle 7. I did not bring it up today, but last timeI did, about lower doses of Ibrance, he did not think it was necessary unless needed. He went to 3 different talks at the San Antonio conference on Ibrance and said he did not hear anything about going lower. He did say that pharmas like to give high dosages and would likely not say no if ever I wanted to go lower. My sister and BIL (he is doing great after colorectal cancer and both are great note-takers) came with me. I told him I was considering a second opinion not about the drugs but about the possibility of any other treatment. He was fine with that but was adamant that he thought surgery would be a terrible idea and somehow he thought I was adversarial. This may be in part because when I first saw him I was already in treatment with a plan devised in Vancouver where all the research and big guns are. We both settled down but my sis and BIL did agree that they did not think I was adversarial. He knows I really like him and we left on good terms but I have been emotional of late and it is exhausting. Also I leave for NZ tomorrow and that alone is tiring LOL.
Inoperable cancer sucks~~my last words for now. Thank you all for being great sounding boards and friends.
Marian
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I have time now to welcome you newbies to our little band where we all support each other through good and not so good. Ask any question and someone will have an answer. You might even receive a tsunami of answers.
I'm on my twelfth cycle of Ibrance. I'm on a trial. marianelizabeth, if your MO is following trial protocol that would be why he's adverse to dropping your dose. I started on 125mgm and had Grade 3 Neutropenia, which is 0.5 or more on your neutrophil count. My neutrophil count was always around 0.63 after the one week break so I had to take two weeks. It wasn't until my neutrophil count dropped below 0.5 that he could drop my dose down to 100mgm because that meant I had Grade 4 Neutropenia.
I've been on the 100mgm dose for 3 or 4 months now and at last my neutrophils responded well last cycle and I was 1.36 after only one week's break instead of two. I think the moral here is be patient and if you trust your MO stick with it but if you don't trust your MO for other reasons, then it's your choice. I'm very happy to put my life in my MO's hands. I trust him implicitly and have no reason not to so far.
If you're new to Ibrance, I do find the fatigue at the end of the cycle knocks me out quite a lot but not every cycle is the same. I've found if I overdo it the fatigue and recovery are worse. For mouth soreness I use Gelclair. I started out needing to use it most days but it has strengthened my mucous membranes so well that I only use it occasionally now. I choose "mushy" food though! No potato crisps......
My quality of life is just so much better since I started on treatment. I was de novo Stage IV and in a bad state at the end of 2016, unable to get out of bed and the pain in my bones was indescribable. Now I'm enjoying life in a quiet way. I've had to give up a lot of things like travel and eating out due to the risk of infection but in return I get to keep my life for a lot longer. When I go to the Cancer Centre I wear a good quality mask because there are a lot of nasty germs around and my MO told me it was a good idea when he saw it. If I don't wear the mask I smear a bit of Bactroban antibiotic ointment around the outside and just inside my nostrils, not a lot but enough to deter any sneaky little germs. A friend who travels a lot does this and never catches the flu despite many airports and plane trips.
Those are my little tips to brighten your day haha. I hope you're all doing well.
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Hello Fellow Ibrancers,
I am just joining you as I am about halfway through cycle 1 @ 100mg per day x 21 days then off 7 days.
Also doing Faslodex injections once a month. My MO does not do the loading dose so my next injections will be a month after the first. He did not explain why no loading dose.
I have read a fraction of all your extremely helpful posts so looking forward to learning more. I so appreciate your generosity in sharing your hard-won knowledge and experience. I knew exactly what to ask for at my very first Fas injections. And of course, I know what to look for at the beginning of Ibrance. There is alot more to learn and to live through. But so far, doing pretty well.
SEs severe heartburn and severe fatigue. Could be much worse. Along with you all, I am hoping for Ibrance/Fas benefits for as long as possible.
Warmly,
V
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Hey leapfrog- the drop in neutrophils you get from Ibrance does NOT pre-dispose you to infections, the way it does with chemo- the bone marrow cells are just arrested, not killed, and so you can get back to planning that travel and ditch the mask- now's the time to have some fun!
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Gumdoctor, welcome to the fun! I just used over the counter Pepcid AC for heartburn and it worked great. Hope tomorrow is a good day!
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Welcome newbies gumdrop, tinyturtle, and releasethecure. Sorry you have to be here, but we are happy to add your voices to ours. I am on cycle 20 of 125mg and doing well. I just got home from spending four days in New Orleans and had a great time. I did not get sick from the plane ride and I want to encourage you to travel and live your life as full as you can. I ended up walking a long ways as we got dropped off on the wrong side of the Mardi Gras parade from the hotel while the parade had the roads blocked, and we couldn't find a police who would let us cross the street to our hotel. But I was surprised at how far I was able to walk, and I was able to go out and walk even more after a short rest. The positive is I caught a lot of beads to bring home to the grandkids! So be encouraged that you can do well. We are all pulling for you!
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Hello everyone! I again need your expert knowledge. As you know, I was worried that the chemical ovarial ablation (Leuproreline) plus Letrozole is not working properly, because I am rather overweight. Someone suggested (sorry for not known anymore who it was) to get my estrogen level tested. I persuaded my doc to do so, the result for estradiol was <5 and for fsh was 13. As far as I understand, the estradiol value shows that the chemical ablation is working. But how is the fsh value to be interpreted? Post-menopausal value would rather be 30-40, my value is rather pre-menopausal, maybe slightly elevated. Does anyone know, if I should worry or is this value normal for ovarial ablation? And what would it mean, if the value was too low, which effect would this have within the body?
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Started Ibrance and Leprozol November 2017 tolerated the 4 weeks . Second round I was hospitalized on day 8 for severe nausea and fever. Stopped medication and restarted 10 days later day 8 again became very ill hospitalized again nausea and fever . Decided to lower dosage from 125 to 75 restarted medication made it to day 4 severe nausea for 18 hours discontinued medication . Plan next week is to start Xeloda . My condition is stage IV breast cancer mestastis to bile duct and liver . Previous breast cancer 2011 treated with chemo and radiation. Since being off Ibrance the last 7 days running a fever 100.5-102.0 every day. Any shared news or ideas would be great. Good luck everyone
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Pomegranate is another great fruit you can eat to increase platelets. As with all red fruits, the seeds of this delicious fruit are packed with iron, an essential mineral for combating low platelet count.
Pomegranate has been used since the ancient times for its healthy and medicinal properties. It is also rich in minerals, antioxidants and vitamin C which is a well-known immune system booster.
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Pomegranates are supposed to be avoided, like grapefruit, on Ibrance.
Moose: so sorry you're having such a rough go. What has your medical team said? When you're temp is stabilized can you try Ribocicclib or Abemaciclib as alternatives to Ibrance? Hope you're feeling better soon.
Welcome to all the newbies! I'm new-ish. Middle of Cycle 4. Doing well for the most part with side effects, though I've been using Grastofil now every cycle to carry my neutrophils through. Grade 4 neutropenia in cycle 1 and took 36 days to get back over 1.0 to begin cycle 2. Scans after cycle 3 showed disease regression and resolved in some parts! Holding onto faith daily.
Hugs to all. X
Ash
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Moose. That is a very atypical reaction to Ibrance. I wonder if it has more to do with where your mets are? The bile duct can get clogged and cause extreme nausea. I guess they've done a procedure to try and unclog it? I can't remember the name of it but my husband had it done when he had pancreatic cancer.
I've been on this thread for a year and have not read of anyone getting as sick as you are from Ibrance. Sorry to hear you've had so much trouble.
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From the Ibrance package insert, instructions say to avoid:
Grapefruit
Pomegranate
Starfruit
Seville oranges
These all have a chemical in them that interferes with Ibrance.
Warmly,
V
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