Ibrance (Palbociclib)
Comments
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Hi everyone! I just started Ibrance and Femara. I made it 17 days on Ibrance before my wbc went down. So now, neuprogen shots. My question is, why is it not okay to eat raw fruit and vegetables? I do like fresh fruit and salads. Thanks for any replies.
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Stillivin, how low did your WBCs and ANC (or neutrophils or granulocytes) actually go? Just curious because I'm under the impression Neupogen and Neulasta are not normally recommended with Ibrance. I'm sure there can always be exceptions for severe situations, but longer breaks or dose reductions are the usual means of dealing with low wbcs, since they normally rebound for most of us within a reasonable time. Of course there are always exceptions. For example, it seems like those who have had RT in the recent past may have more difficulty with low counts.
And, no, I do not worry about fresh fruits and salads. In fact, I live on those, especially fruit. I am careful about things being fresh, and I wash them well and toss anything that looks old. But living in AZ, getting fresh produce shouldn't be a problem for you. Ibrance is not chemo. It only works on one pathway, unlike chemo which kills all fast growing cells, so precautions (including white blood cell building meds and shunning fresh foods -- with the possible exception of sushi or other raw fish) -- for most of us aren't as stringent or necessary as they are with chemo.
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Stilvin - To repeat what Deanna just told you ...
Fresh fruits and vegetables are the cornerstone of an anti-cancer diet. Who is telling you not to eat them? Eat them till you pass out.
There is a mis-conception that the low WBC/neutrophils ibrance can cause will themselves make one susceptible to infection (from raw vegetables?), but there is no data to support that.
Similarly, neuprogen shots are NOT indicated as the way to treat low WBC when you are on ibrance. You are not short white blood cells, they are just in suspended animation in your bones. Ibrance halts their growth just as it halts the cancer cells, but doesn't kill them. You stay off ibrance a bit longer and/or drop the dose.
Be sure you have a doctor experienced with Ibrance. If you don't, find one that is. This is not like other chemos and many (very good) doctors are very confused with how to manage this new class of drugs.
Also, please fill out the diagnosis and treatment profile and make it public in settings. This gives us context for your questions.
>Z<
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My wbc went from 4.5 to 1.0 and the neutrophils went from 3.5 to 1. I didn't question the neupogen. I did it 17 years ago, but you are correct, that was with the drip chemo. Hmmm??!!
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Stilvin - the adverse event management protocol for ibrance is on page four of this pdf. Neutrophils are the thing we watch. As long as you are about 1 (or 1000mm3) with the neutrophils before you start Ibrance you are still grade 2 neutropenia and there is no action taken. You can drop below 1 (or 1000mm3) while you are on it.
I don't think your onc has been managing patients on ibrance for long. It's forgivable, but find one that knows ibrance.
>Z<
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Stllivin... Barring other circumstances, which we have no way of knowing regarding your hx, what you've posted does not merit being pulled off Ibrance, nor given Neupogen.
Basically, your neutrophils need to be at 1.0 before you can restart your next cycle. For many of us, our neutrophils fall below 1.0 (my normal "low" is .7) in the third week we're on Ibrance. Ideally, they will rebound for most patients to at least 1.0 by Day 28, at which time you can restart Ibrance. Mine take a few more days to rebound, so I simply wait another week or so. I believe .5 is considered Grade 3 neutropenia, and would be cause for concern and a possible dose reduction.
There are two charts that might be helpful to you and your onc. I'm going to try to find them (again), but if anyone beats me to it, please share them for Stllivin. One shows grades of neutropenia. The other shows the recommended action re. Ibrance. Gonna look for those now.
And your onc isn't the only one who appears (we don't know for sure) to be inexperienced with Ibrance. It's fairly common. The good news is, it's such a great drug, it's worth educating yourself and him so that you can hopefully stay on it!
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Z and I were writing at the same time. Here are the 2 charts I had in mind. One is probably the same or very much like the pdf she's already linked for you.
Dose modification chart - Scroll to Section 2.2
Grades of neutropenia - Line 6 shows ANC/neutrophils
And, Z, can you or anyone here find the reference anywhere about not using Neupogen or Neulasta with Ibrance? I know I've seen it in the past, but when I wanted to share it recently with someone in another Ibrance discussion group, I couldn't find it. Thanks.
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A quick update. I met with my radiation doctor. Both she and the tumor board on which my breast surgeon belongs have agreed that I do not need radiation. Obviously radiation might be needed down the road, but current thinking is that perhaps someone in my situation doesn't need it (any stage with pathology like mine). My pathology after surgery revealed that my nodes were free of cancer cells. Clean margins. Everything else had shrunk considerably. Normally they'd do radiation because that has been the standard.... treatment, surgery, radiation. They will have me wait for now. They'll examine me closely monthly (which they were doing anyway). I continue on ibrance + letrozole + lupron. I've recovered well from my surgery. Who knows how long I will be on ibrance. I started April 30, 2016. I'd love many years on this since I tolerate well and go about my daily life with little difficulty. A strange journey this is....
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Ladies, I know I am fairly new to this Ibrance thread (December), but can I please chime in here and say that you are just the most incredible group and I am overwhelmed by your knowledge and generous spirits!! Your support for each other warms my heart.
I have been in a bit of progression depression since the Holidays are over and things quieted down enough for me to digest my change of treatment for bone mets progression ( I had a wonderful 5 year run on Faslodex) but knowing I can come here and read your posts has done so much for me.
I will be starting round 3 of the Ibrance on Friday and so far my labs are holding fairly well and I'll most likely be having scans in March. I have some overall fatigue and nausea but I'm trying to find my new normal and new rhythm.
Much love to you all,
Sue
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Hi Sue!
What a great long run on faslodex alone! Is the only change adding Ibrance? I remember the fatigue in early months coming from Ibrance but it all went away for me, no SEs at the moment. I would look to add more, but as we're discussing, there isn't much going on for combinations. For HIV/AIDS infections the breakthough was when they realized the virus could not mutate and escape a combination of drugs, and so we have the HAART treatments, people have to take them for life, but it suppresses the virus to undetectable (though still hiding out in reservoirs). The hope for cancer would be to get to the same point, some killer combination that the cancer cells cannot readily escape by mutation- after we get to that point, then they can work on a cure. Hang in there...
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stillivin, without being redundant, it's the risk of bacterial infection from fresh produce WHEN your ANC(absolute neutrophil count) gets down to about 800 that is the reason MO's recommend no fresh produce. My oncology nurses said just rinse things in lemon juice and let it sit a bit. When your count is back up to 1000, you're good to go! The harmful bacteria such as E.coli can come from organic fertilizers or the hands that pick the produce. I ate from my own veggie garden all summer, so no worries there! Love and hugs ,MJH
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Thank you z,dlb and mjh for all the great info. I have a lot to learn about this new drug. I'm going to take the chart information and have my onc go over it with me. Maybe that will help him too!
If it went for some weird kidney issue I had, which has now resolved itself since I've been taken off the a/a combo, I'dstill be on that. I had a good 4 years with that and I guess I just haven't educated myself enough on the Ibrance.
Z - I'll try to update my dx section soon so it is more accurate.
Thanks again for the great info.
Health and Happiness to everyone.
Suzy
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Lol, you are welcome, lulubee. Definitely stay on this thread wherever else you go. I'll tell you all right now that you are stuck with me!
DeeDee, I think I would want to try a drug that matched a known mutation -- that's personalized medicine. I might consult a liver specialist at a major cancer center about the liver concerns.
Eelder, nice that you get to skip radiation. That makes sense to me since local control is not the main thing at this point. Better for you to have more energy for exercising and eating well, and not tax your body unnecessarily, I think.
Hi, Susan R. Yes, finding a new rhythm is a good way to put it. The more I can accept and adapt to the effects of the drugs, and just go with it, the better I feel emotionally. Are you staying with faslodex and adding Ibrance, or did you switch to letrozole?
Very diplomatic solution, Stllivn, to ask your onc to look at the chart with you.
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Thank you Everyone for your support and help thinking this through! Thank you so much, Cure-ious and Zarovka for looking around for trials for me! (That one trial that isn't recruiting is the one with BKM120 buparlisib that had such toxic mood effects i.e. suicide attempts. Phooey, it had been on my short list.)
Ok, so assuming I will use an anti-estrogen other than the non-steriodal aromatase inhibitor letrozole, here are the possibilities. What makes the most sense to you?
Faslodex (But I want to address two pathways at once.)
Faslodex + Ibrance (This one bets that it is letrozole and not Ibrance beginning to fail.)
Faslodex + Ibrance + letrozole
Faslodex + Afinitor (Nice because dual therapy with two new-to-me drugs. Not nice because it could disqualify me from a future trial that uses either of these drugs e.g. a trial with the new mTor drug Rapalink)
Faslodex + a trial drug or drugs (Still looking.)
Aromasin (steroidal aromatase inhibitor) + Afinitor (This one sort of bets that it is the Ibrance that is beginning to fail, and also switches to a different kind of aromatase inhibitor.)
I really hope my second opinion oncs will have a sense of what trials may be coming and when, and how to choose a good treatment for now that will keep the door open for them. Maybe I ask too much. I've been working hard on phone calls, medical records, and faxes. I have one second opinion set up, as well as an extra appointment to have more discussion with my onc, poor woman. I need her to let me in on her thought process. I need to know she has considered all the options and then to tell me why she thinks one is best. My other second opinion is in the works but I don't yet know how soon I can get an appointment. They want more records first.
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Hi Everyone,
This thread moves so fast. I read everyday, multiple times a day and I still can't keep up. I don't know how some of you ladies and gentlemen do it but I'm grateful that you do!
At any rate I just wanted to share the results of my latest scans. I get scans every 4 months (CT of abdomen, pelvis, chest and a bone scan). I have bone only mets. So great news that the bone scan came back stable. No progression of my bone mets. CT of pelvis, chest and abdomen all good no sign of mets. The abdomen ct did show a 5mm "thing" on my liver that was "concerning for metastases" but my Oncologist assured me it is nothing to worry about. I've had this happen before where something shows up on my liver that is too small to biopsy and the radiologist can't determine what it is so to be safe they say "concerning for mets" because I have breast cancer they have cover themselves. It either doesn't show up again or is less conspicuous or isn't worth mentioning depending on the radiologist. She offered me an MRI but said it will most likely tell us nothing more. I had the MRI and she was right. - it provided no helpful information. So we are moving ahead with no change in protocol. I'm continuing on with Cycle 13 of Ibrance/Letrozole. Scans again in 4 months (May).
I wish I felt happier. Just been in a bit of a funk and can't quite shake it. I feel like I'm being chased by Cancer and it keeps creeping up on me. It's still behind me, hasn't caught up yet. But it is mentally exhausting trying to keep ahead of it. Sorry - that wasn't very uplifting now was it...
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Congratulations on a great scan Animal Crackers. I had stable scans in December and I had to log in here to feel some enthusiasm from other people for this result. I did not feel it myself. I want the stuff gone and all I get from a good scan is a 3 month reprieve until the next scan. However, that really was a great scan. Good job staying stable.
Shetland - You've already found all the obvious clinical trials, so my remaining ideas are all kinda out there. But here they are ...
Reversing Hormone Therapy Resistance With Epigenetic-Immune Modification This is the first study to look at the response of hormone therapy resistance breast cancer to epigenetic immune priming. It is also the first study to look at the combination of an HDAC inhibitor (vorinostat), an anti-estrogen (tamoxifen) and a PD-1 inhibitor, pembrolizumab in pre or postmenopausal patients with ER+ advanced breast cancer with progression on multiple prior therapies.
This one is run by Pamela Munster at UCSF. Pembrolizumab is Keytruda so what we have cooking here is some kind of immunotherapy triple threat. My gut is that this makes more sense after you have a good long run on faslodex and you are truly hormone resistant. LMWL may be a candidate for this one and I know he is consulting with Dr. Munster. Interested in how that goes.
Faslodex, Ibrance and Gedatolisib is probably on your radar, but I've lost track. Gedatolisib is very interesting and this trial would allow you to keep the ibrance.
Safety, Tolerability & Potential Anti-cancer Activity of Increasing Doses of AZD5363 in Different Treatment Schedules You can combine faslodex with an Akt inhibitor (AZD5363) in this trial. Phase I, so you want an onc who really believes in this strategy.
It's hard to out-research you, so that is all I got for the moment.
I hope that you are pressing your second opinion docs on whether or not you have progressed because I think that is still a question.
If you choose to switch, I would do faslodex, faslodex/ibrance or a trial of something with faslodex. I might lobby to add a different CDK 4/6 inhibitor when the new ones start coming out in the spring. People don't generally combine faslodex and letrozol but that is a good question for your oncologist team.
>Z<
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Hello, to my Ibrance sisters!
I started the fifth installment of this magic medicine Sunday and fatigue is now my only side effect. Last month I had the first post-treatment scans and, according to my oncologist, had a remarkable response in my widespread bone mets. Also the lymph node in my sternum now just gets Honorable Mention as "Miss Cannot-rule-out-metastasis"! My counts have remained just under the normal range. The onc says he starts everyone with 100 mg which could explain why the side effects have been less than some of yours. For those of you struggling, I don't think asking for the lower dose would be out of line. My doc says all his patients are doing well on it.
I had mouth sores at first but started eating Stonyfield Grass-Fed Greek Yogurt which cleared them up and has prevented any since. I'm not saying the fatigue isn't annoying and the prospect of having it from now on bothers me. However, I have hope to get to NEAD and drop to the 75mg.
I have struggled with the AI's in the past so I'm praying that the aches and pains and limitations don't show up. Turmeric is my friendly hedge against that, I hope. For those of you who want to broaden your healing tools, I recommend a book called Radical Remission. I trust that new medicines will help heal us all but I like knowing I can add natural things as well. I directed a cancer support center for almost 20 years and the people who did best incorporated lots of complementary therapies into their healing regimens. I want to be like them and lots of you!
Please know that all of you here are in my prayers as we navigate our way through the fear and uncertainty together. It's nice to meet you! I celebrate my 23-year breast cancer anniversary in a few weeks and I'm thankful for every day! (If you wonder why I don't have Stage IV in my diagnosis notes here, it's because I've refused to claim that. I've had people tell me, "I'm Stage IV," with a "...so I'm going to die" look in their eyes. I may die from BC one day but I'm not going through the rest of my life with that IV stamped on my head!)
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Thanks Z - you hit the nail right on the head with your comment "I want the stuff gone and all I get from a good scan is a 3 month reprieve until the next scan." Except it's not even a reprieve. It's really just a confirmation that I have been ok for the last 4 months. Everyday that goes by after the scan I worry if progression is happening. Ugh I really am in a funk! Sorry everyone. I don't know why I'm feeling so gloomy.
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AnimalCrackers - Go for a walk and then visit us on the Stage V Fitness thread and tell us about it. It's all about endorphins. We're all quite tired of this, but I find there is no way to feel sick hanging out with the Stage V crowd.
If that doesn't work, you can try some xkcd. Randall Munroe found out his wife had stage IV breast cancer soon after they were engaged.
>Z<
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Cure-ious and Shetland, Thank you for your comments. I decided to give afatinib a chance and will take the first dose tonight.
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Hello, just wanted to check in. I've been busy the last week so I'll have to go back and read what I've missed. I've had ball games for my son all week. Today I went to Cleveland Clinic to sign consent and give blood for a trial that was offered to me when I had my 2nd opinion there. It is a genome test. It has been funded by the owner of Groupon. It is supposed to help me with future treatment and immunotherapy! It was a long day, 3 1/2 hours one way to get there but definitely worth it. They will get a tumor sample from my mastectomy that was done this past July.
I'm still doing pretty well with my side effects on the Ibrance/Gedatolisib/letrazole combo. I have had a little diarrhea and a couple sores in my mouth. I am not sure if they are fever blisters though. The one on my lip is in the corner of my mouth and it feels like a cold sore but not sure now?!? It haspart of my cheek puffy and sore. It is just a little hard to eat. I'm going to get the magic mouthwash tomorrow and hope it works. Other than that I've been fine. The mouth thing isn't something I want to have every day to deal with so hopefully it will go away.
Misty
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Shetland, I'd stick with Faslodex and probably ask to keep on with Ibrance. Since there is no test they use to see if we are even benefiting from the drug, how as we supposed to decide when we stop benefiting? It's a powerful drug, so I'd be relunctant to let it go.
As to whether Afinitor might disqualify you from some future clinical trial, it seems that RapaLink was originally designed as the next step after AA, so probably it wouldn't disqualify you to have taken Afinitor previously? A question for the doc. However, with the side effects being what they are, you might want to just try Faslodex or Faslodex/Ibrance combo first, and see if the scans show improvement? This is why we have MOs, they have the experience of seeing so many cases, we really don't know. Anyway, at least some people on these boards have had really long runs on Faslodex, even after AI...
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APG- What genomic testing are you doing? Do you have a link? thanks!
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I have had no testing done thus far, but when I need it I'd like to find somebody who does GPS testing, the analysis of which includes the cancer cell proteins as well as the DNA: http://www.cancermoonshot2020.org/press-releases/g...
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Apg - Mouth sores are common with Ibrance. I get them from time to time. I've just been cursing them, but flushing the mouth with live yogurt culture is something I will try. I've been reading a lot about bacteria and oral and gut health. Should work. Thanks for the updates. Glad you are doing so well on this combo.
Cure-ious - interesting link to the GPS testing. On my list ...
>Z<
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Cure-ious and Zarovka, my grandma would say, "Great minds think alike." Your idea of starting with faslodex + Ibrance is what I have been thinking of today. Since faslodex alone is a good option, even not knowing whether Ibrance is adding benefit is ok since it is very tolerable. Afinitor, on the other hand, sounds yucky, but I could use it with faslodex if the Ibrance and faslodex combo doesn't work. I believe I can afford to watch and see. I'm glad to know that RapaLink may be possible even after afinitor; I will ask all three oncs about it.
Thank you, Z, I will look at all those links.
Animal Crackers, that is vivid imagery about being chased by cancer that is trying to creep up on you. Would it help to visualize turning to face it and telling it how despicable it is? Or turning your back on it in disdain like a cat does to another cat to say, I am above being scared by you. And then go off and do something nice for yourself to spite it. Sometimes this defiant attitude helps me. I don't want to minimize your feelings. Sometimes I am appalled by how cancer doesn't care how hard we try or how much we want to be well.
Hi Pat, and welcome. I would love to hear more of the wisdom you gained working in cancer support.
Good for you, DeeDee.
Apg, I'm sorry about the mouth sores. They get old fast. In addition to the MM, try rinsing with 8 oz warm water, 1/4 t baking soda, 1/8 t salt several times per day, to aid healing.
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Hi Z and SP! After being off the boards for 6 days (sorry to lose Rosevalley) I am pleased to report back from working the Sundance Festival in some wild snowstorms. I had my left lung drained yesterday and it was the lowest amount (300cc) all year! Ibrance @100 + faslodex is working for me - round #15 in a few weeks. I'll get my next PET near the end of March to see if the jaw met is DOA, but the numbness is gone. Jaw is a little sore though.
I did take 5 days off Ibrance after 3 weeks of rads to let my WBC rebound, but took Ibrance at 7500 above sea level in Deer Valley/Park City. I am still working full time and walking every day. I lost 7 lbs on rads and intend to keep it off. All my skinny jeans fit. Here's a pic of my week.0 -
Hi everyone. I have been on 3 weeks of 75 mg Ibrance and 3 loading doses of Faslodex shots since December 1, 2016 (Xeloda from February 2012 - November 2016). Today, my onc doc reported that my CA 15-3 went up to 94 from 66, and so after a week's break for my second month (ending Saturday), I will be upped to 100 mg of Ibrance (got the monthly Faslodex shots today). I was diagnosed with MBC to the bones in September 2009; primary Stage 2 diagnosis - R and Stage 0 - L in June 2007. I'm more than a little concerned about the jump in the CA 15-3. Has anyone else had a similar experience? I'm doing my best to talk myself off the proverbial ledge and could use some words of wisdom. Thank you!
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Thanks for the encouraging words.
Cure-ious and Shetland I am now off of the Faslodex and they have added Letrazole along with the Ibrance. When I progressed to Stage IV with a single bone met in late 2008, I started Letrazole and had 3 years of stable on it prior to starting Faslodex in 2011 for bone met progression.
I have started Round 3 tonight with dinner and leave for St. Pete Florida tomorrow for 17 days!
SusanR
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Wow, lalady, it sounds like things are looking up for you with the lung improving and being finished with jaw rads. I have to say, what a strange life we live when we talk about draining a lung in the same breath as working at a film festival during snowstorms.
Welcome, ParkBench. Hold steady -- It is not uncommon for markers to go up at first on that combo. It tends to work more slowly than chemo, and dying tumors can cause the markers to rise.
Susan, ok, so letrozole worked for you for three years, then you were off it for five years, so now you will use it again with Ibrance added. Sounds like your onc is remaining calm and conserving your resources.
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