Ibrance (Palbociclib)
Comments
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ziz, I had to go off of Letrozole and Ibrance for 3 months because of liver enzyme issues and my scans still improved. Sorry to hear of progression for you, that bites. Thanks momallthetime, I am about ready to start at a lower dose of ibrance along with the Faslodex I have been on for 5 months. I am starting to get scanxiety as I get scans in two weeks and have just been feeling some occasional new stabs of pain, so sense that something is going on.... Hope it's just healing pains. Rosevalley, I am so sorry this tx is not working for you and you feel like crud...I hope they come up with a magical combo for you tomorrow. I can tell when the Faslodex is wearing off too...Barb, the cost of Ibrance almost always gets taken care of by some grant or insurance. I don't think I've heard of many who could not get it due to cost. Good luck! Sorry you had to move on Kaption, Let us know how the new tx goes too.
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Deanna, thanks so much for the info from your onc concerning people being on Ibrance for years. I'm sure that's good news because it means the cancer is controlled but I'd love to hear about some who were actually able to stop the Ibrance and just take an AI. My body is tolerating the drug well as far as blood counts and liver enzymes, but the fatigue is really getting to me. I know I shouldn't complain as so many of you here are so much worse off and I am so sorry about that. I have so much to be grateful for, including all of you who are setting such a brave example. It's just hard to think there's no endpoint like there was the first time around, six months of chemo and five years of tamoxifen. I guess the lesson that I'm learning here is to make the most of everyday and be grateful for all the blessings of the good days.
God bless you all, hope you have a pain free good nights sleep.0 -
I will be starting Ibrance in a couple of weeks after radiation. Just wondering about hair loss does it happen for everyone?
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Tyling,
Statistically it is about 22%. And, for most who have reported on here it is thinning-all on top for me. Mine happened about cycles 3-6 (I'm guessing) but definitely stopped. I got a wig for "dress up" and wore a ball cap a while. I'm going out without a cap these days. It's probably borderline as to whether I should. But as it got hotter I had my stylist neaten things up and out I go. It is what it is.
To those who have been reading my past posts: still on Ibrance waiting to hear if I'll be in a trial.
In the meantime I have another UTI ( long term, chronic issue) but this time was weird. Went to my pcp yesterday. The immediate results showed high red and white blood counts in my urine, but not much bacteria. I said, "what does that mean?" He very honestly replied "I don't know." So, it will be cultured. Anyone know if this can be an Ibrance/ Letrozol se? I have had several urine staples taken this past year and this is the first result like this. When I google this issue, I don't like what I see. Guess I'll contact my MO after the culture results. I, of course, have a urologist too. More drama!!
PS. I may be leaving Ibrance, but this is my favorite discussion board! :-)
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Kaption, I'm so sorry to hear you are having another problem, I will pray that it's something simple although with cancer, it never seems to be. I agree this is one of my favorite boards, I've learned so much.
Tyling, like Kaption and many others here, my hair is thinning more as I'm at day 16 of my 5th round. I hope that it will stop like Kaption's has.
One other side effect besides the fatigue that I had the other day and would have scared me to death if I had not read about someone else here reporting it was a few moments after taking the Ibrance, I burped white smoke and then had some yellow mucus which is definitely from the Ibrance. This left me with bad heartburn for the rest of the day. I took my usual omeprazole and then a couple hours later, two gaviscon which helped a bit. I was better the next day. Wishing you best of luck with Ibrance, it seems to get easier to tolerate after the first few months.
Faith
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My beautiful, strong and awesome chicas;
I want you all to know that even if I don't post I always think, pray and send good energy your way.
I'll be moving to ALL ABOUT XELODA tread but not leaving this one.
Thank you very much for all the support that I found here and the information youshared with me.
Abrazos
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Kap- I had one nasty ITU that I didn't even know I had. Had to do IV Antiboitics.
Faith- you have to drink a lot of water when taking Ibrance. Down at least 8 ounces.
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theZ- good luck and I will be thinking of you. Hugs.
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Abrazos, Z. Stay in touch
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Hi Everyone. My doctor at the City of Hope would like me to consider a clinical trial that is starting up there. Its adding Keytruda to Ibrance and letrozole. I believe the criteria is to be stable on Ibrance for two scans. They want to see if adding Keytruda will push the disease toward NED or at the least longer lasting stability. I haven't decided if I'm going to do it yet. It would mean adding an infusion, while I am currently stable without one. BUT in the name of research, I am considering it. Plus, I guess it could also help me in the long run. If anyone is interested in looking it up on clinical trials.gov, its listed under keytruda (or its generic name) with Palbo and letrozole ( i think) at the City of Hope.
For those of you just starting out, I am 13 months on Ibrance. Most SEs have disappeared. I have occasional diarrhea and my nails are thin. If I overdo it (like last weekends three day music festival) it takes me a few days to bounce back. Otherwise, I feel relatively normal and feel very very blessed and grateful to be here.
Stefanie
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Hi Stefajoy,
Thought I'd throw in my 3¢ worth on your Keytruda in clinical trial considerations.
Three anecdotes on Keytruda - two from people I know, one from an MBC blogger -
First, Richard in my advanced cancer support group had a Stage IV metastatic melanoma and got a complete response to Keytruda for at least 9 months. I haven't seen him since last autumn, but he was doing great then. I don't know how long remissions usually last with melanoma.
My good friend Rob has been on it for 9 months for Stage IV metastatic kidney cancer. It's been very well tolerated, but follow-up scans show progression, so he's on to the next thing.
The MBC blogger Barb had a serious, life-threatening reaction to it:
Wait, there's a fourth!
Jill from Dancing with Cancer is considering a trial too:
http://jillscancerjourney.blogspot.com/2016/05/the...
You might get in touch with Barb and Jill to compare notes.
It's interesting to learn of the wide range of reactions to this promising, but new treatment approach.
Best wishes as you move toward what's right for you!
warmly, another Stephanie
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thank you, Stephanie.
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LovesMaltese, thanks for the note about the water and Ibrance but I do drink at least 12-16 oz. when taking it. Then I drink several more glasses throughout the day as the dr. told me to do. In fact, I think I drink too much water because my sodium count is usually low. The prescribing info that came with the Ibrance says I believe, 2-3 qts. of water a day which I Imagine is so that the drugs get washed out of our kidneys. I'm beginning to think I need to cut back on the water because I was more dizzy than usual today and felt a little better after having some tomato juice which is high in sodium. Everyday seems to be a new adventure with this drug.
Stefajoy, it's good to hear most of your SE's have disappeared in the thirteen months you've been on it. It's something to look forward to. Thanks for that info.
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Faith,
I too have had the low sodium with dizziness. It has gotten better, but was still low this month. I make sure to have salty snacks ready. I do drink plenty of water because of regular UTIs.
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Oh well so much for that Ibrance dose. I swallowed it and promptly puked up dinner. Ouch expensive mistake. We went to a restaurant to celebrate my DH's birthday and I tried to eat like a normal person. Oh well. I had fun and enjoyed myself even if an hour and half later I lost it all. Better luck tomorrow.
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Faith - Ibrance is something you stay on for a long time, if you follow the plan. There is no standard protocol where you stop taking Ibrance after you are stable or NED for a period, for example. There is no experience with people who stop taking it.
If I get stable for a while or I get to NED, I will consider going off of Ibrance. Letrozol alone has kept many people stable for a long time. I believe in functional medicine and, long term, the side effects of Ibrance will undermine my overall health. But those of us who choose to go off of Ibrance will be forging a new trail. There is no data to support going off Ibrance.
I had weird intense tingling and stinging in my feet and hands towards the end of cycle four. I've only just learned to spell neuropathy, but I think that is what it is. My hair roots hurt as well. I took a two week (instead of one week) break from Ibrance to get over the "neuropathy". Nearing the end of week two and much better but there is still a little tingle in my fingers. The roots of my hair still hurt.
I do take supplements and various complementary medications so I am never sure what to blame on Ibrance. Especially when the side effect persists through my week or two off ...
>Z<
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Stephajoy - just read Barb's experience with Keytruda (the barbigwire blog link Steph posted). That is scary, please consider all options. Do you need to leave the stability that Ibrance/Fas has given you? IV meds are serious and you will lose your hair, etc. and may need a port. Just my concern for you. I'm on round #6 of this combo doing well other than switched to #100 which feels better. I had hair loss (using hair halo) and thin nails - nails are now fine due to daily biotin #5000 and Essie "Grow Stonger" base coat - a recommend for all with thinning nails. I am in my 50's still working full time. I go to UCLA, very happy with my treatment there other than being part the lockdown after the murder suicide on Wednesday - I was picking up Ibrance. Played Angry Birds until they opened the doors after a few hours. I think they should design Angry Birds Cancer version where we fling birds at cancer cells - Rovio are you listening?
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Z. It looks like you and I started the Ibrance about the same time, I'm on day 17 of the 5th round. You are of course much younger than I am and more fit although I was doing a pretty good job of staying active until this thing hit. I had a hard time wrapping my head around it a second time. I'm starting to get into the fighting mode I had the first time and it feels good to do that.
I now realize that we stay on this drug as long as it's working but in the beginning my MO indicated it might only be for 5-6 months if I was stable or NED then I could stay on just the letrozole and go back on Ibrance if there is progression. He now seems to have changed his mind about that. I see him on Tuesday and I am going to question him more about this seeming change. I'm also going back to my original onc from 25 years ago who is still practicing and who from the website appears to be more focused on Breast cancer than the MO I'm seeing but who has an excellent reputation. This present one is just very close to home but I can drive further if need be.
If we both decide to stop the Ibrance at some time in the near future, we will probably be trail blazers. However, with that being said, it seems like sometimes except for the fatigue, a lot of the SE's are from the letrozole, since I have them during the week off Ibrance. I also think I'm beginning a little neuropathy in my feet, but my plantar fasciitis is also a contributing factor. It's hard to know what causes what, as you said about supplements, etc since I also take lots of those too. I do think I'm going to up my biotin since I'm only taking about 3000 mcg and my hair is really thinning now.
Kaption, thanks for letting me know I'm not the only one with low sodium causing the dizziness. Although, I'm sorry you are also dealing with it but it helps to know this can be another thing to be expected and not unusual.
Hope everyone sleeps well tonight. A good nights sleep seems to make everything better.
Fait
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Is anyone having trouble with mouth sores? I usually get them each cycle but nothing to bad that I can't manage. However, this month has been very painful. I had 3 on my tongue and 3 on the side of my month at same time. I could not eat or talk for four days. They are easing up now but I can feel a cold sore on lip starting. Any suggestions to help? Any thoughts of why so bad this cycle? I think it is my eighth or ninth cycle
Thanks!
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single mom, I've had a few mouth sores, but not what you are describing. Used the mouthwash that helps. So sorry.
Well, confession time. I accidentally opened quite a storm on FB yesterday. Stand Up to Cancer posted an article about how lifestyle choices can reduce the chances of getting cancer 40-60%. Yes, we all know that and truly try to do what we can.
I responded that, while what they said is true many MANY of us with cancer did do most of the right things and still have cancer. Used myself as an example, of course- non-smoker, decent, better than average diet, normal weifght, regular exercise, etc. My point was DO NOT blame the cancer patient and assume he or she has cancer because of bad choices. Sometimes, it just happens. I got over a hundred responses. Overwhelmingly in support of what I said. A few said I didn't understand the point of the article. A few said "if you take care of your body it will take care of you." But, the vast majority of responses where examples of their own lives, or of loved ones. And all echoed my statement of make good choices, but don't let a cancer patient feel guilty for being sick.
My shock was in how many people responded! Just thought I'd share 😊
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Singlemom1,
How ironic... my MO just prescribed Ibrance on Friday Afinitor/Exemestane failed after a year, and I'm waiting on delivery sometime mid week. I was reading through the posts to see how others are fairing, but am glad that I might be able to give you a useful suggestion about the mouth sores. I had some horrible bouts with mouth sores - so much that I couldn't swallow without pain meds. I tried Magic Mouthwash but it didn't help at all, so my doctor prescribed MuGard Mouth/Throat Liquid, which was only available from specialty pharmacies (at least in my experience) last November. It worked immediately and significantly reduced the size and pain of the ulcers - just in time for Thanksgiving dinner! It was very expensive though (I think $600 a bottle) but we were able to find financial help from the company. Not sure if I can post the name of the pharmacy here, but will someone with more experience on this site tells me it is okay, or will PM you with details. Of course, your doctor probably has a direct line to a specialty pharmacy if he/she feels it is a good idea. I'll be thinking of you and hoping this will give you some relief.
Thanks to all of you on this thread for the excellent information and suggestions You've made the transition to Ibrance much less scary!
Angela
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Kaption. I totally support you. It is wrong to blame the ca patient for their condition. I gave up meat 41 years ago and kept a Very healthy diet, was thin, worked out 4-5 times per week, breast fed, took evista for 5 years, had a prophylactic hysterectomy ( was afraid of hormones since my mom died of bc at 41) only drank bottled water( lived on the north shore of LI and thought the high rate of BC there was environmental) , had both my children before 30 and did EVERYTHING right but stll got stage 3c bc that is 98% Er+ and Pr+. My Drs said it was just bad luck!!! And bad family history - although we don't have the BRAca gene many in my family have had breast or ovarian cancer!
Babs
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Babs,
You wonder, when you reads stats like the one in the SU to Cancer article how those are collected. (I've had a few research/stats courses). I think those articles get a bit creative with the data. I read story after story just like yours. I wonder who is truly documenting the past health choices of those with cancer.
Btw, I applaud the Stand Up to Cancer group and their push to get researchers to collaborate. Very important concept!
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Babs6287- we are BRCA negative too and have a fair amount of breast cancer and ovarian and prostate cancer. I don't think they have all the markers.
Kaption- thank you for posting that many cancer patients did everything right and got cancer anyway. Blaming the patient isn't helpful.
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Blame is the last thing people with MBC want to hear! WTF is wrong with people??!! Kaption good for you for creating a firestorm and educating mindless people
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This "reply? is LONG after this was posted - I just came back on this site after a few years. I'm in my 2nd month of Ibrance(and Letrozol) after having been on Afinitor for just over a year - and on 5 other chemos prior to last year - going back to summer 2011 when I got the Stage IV diagnosis(from the get-go). Back to Ibrance: I got my swollen-tops-of feet and ankles back within 2 weeks. Also have had a lot of arm pain. Since found in 2011 the bones from neck to pelvis have been loaded with the cancer, but have done quite well....tell me about your experience now that it's a long time since you posted.
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I just got back into this site after a few years and , I guess, I should put all the "cancer bio" in - sometime. I only have the cancer in all the bones of the torso and have had this since my initial diagnosis - which was a Stage IV - in summer 2011. So Ibrance/Letrozol, which I've been on about 7 weeks is my 7th kind of chemo(one other oral type:Afinotor)and prior to April2015 had 5 kind of infusion ones - most of which I forget names once I go on to the next one. Trade some side effects for new side effects when changing chemos! Achy bones and muscles and low blood counts, swelling of tops of feet with this one, but managing....Tylenol when I need it. Shocked and grateful that I'm still alive after this diagnosis 5 years ago....I get blood work done weekly so my oncologist can monitor "drops" in counts. Not on this one long enough to know if it'll keep the cancer from going to an organ.....the other 6 have kept it at bay...all the best.
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wow! glad to see that tumor markers going down like that - terrific...
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about two weeks ago I had swelling of the ankles and tops of feet. It wasn't due to treatment because it was they day I was to start ibrance/faslodex. I googled and I think it was just from sitting all day at work. Also the night before it started I ate a banquet salisbury steak TV dinner so maybe that did it with all the sodium. I love those dinners and they're only a dollar! The swelling lasted 2 days and was pitting. Since then I've been getting up from seat at work more often and also started taking an 81 mg aspirin per day, in case it has to do with circulation. I'm hoping it's that and not heart failure. That's all I need! Ever since chemo 11 yrs ago, my veins have been very skinny and hard to stick, so maybe that is the case with the leg veins too.
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I have mouth sores that actually get worse on my week off. I strongly suspect some of my supplements which I ramp up on my week off. I've been experimenting but have not figured it out.
In any case, don't immediately assume a side effect is the Ibrance alone. I am just starting cycle 5 today after two weeks off. I feel better from the break, but not completely. Living with non-detectable levels of estrogen is going to have some effects too.
That said, the side effects of Ibrance were intense in cycle four. I gave myself an extra week off. Other people drop the dosage. These are all options. Eating is important. People do well on lower doses.
>Z<
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