Ibrance (Palbociclib)
Comments
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Oh, Pat, I'm so sorry to hear about your friend, Cindy. I know that's hard, especially when you tried so hard to get her to the doctor.
And NO, I have never even considered washing my clothes or anything else separately from others! That's surely a new one on me. Those lists of possible side effects would surely scare anyone silly, but blessedly, often very few occur. I think that it is, as is so often the case, all about the lawyers and liability. They have to cover their fannies, lest someone get a hang-nail and its not having been listed as a "possible side effect", exposing the company to potential lawsuit(s). Phooey on all of that.
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Pat; I'm so sorry to hear about your old friend Cindy passing. So sad and such a loss. God bless.
Cathy
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Pat and IntoLight, It is sad to hear that you both lost friends recently. I am sorry for your losses. I hope you feel their presence in the warm memories that you shared.
Hugs and prayers from, Lynne
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hello ladies,
I’m just back from my third (and final i guess) opinion, the MO siad that I’m definitely postmenopausal because of my age (53), my high FSH level (37), taking chemo and pelvic radiotherapy. So all contributed to menopause. And he’s confident about starting femara alone without zoladex.
As regards Ibrance, he told me that It hasn’t been tried after chemotherapy for MBC so I’m not eligible for it now. But who knows may be we can use it as a later line.
Thank you for your support and wish me luck on my new treatment hopefully it will keep me here a while
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Seaway - I will definitely have my markers looked at as I would rather be proactive than not - thank you!
Jaylea - I will contact Lita thank you!
PatgMc - LOL , barely have time to make my bed, never mind wash the sheets - arghh, and the same with handling the capsules, I was not advised of it, so I won't worry about it now
May Cindy rest in peace...such a horrible disease we have to deal with, so much pain 
Well Have a great Wednesday everyone, I am off to get ready for a Retirement Luncheon for my hubby, whose last day of work is tomorrow - arghhhh not sure how we will manage being together 24/7
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Tropa, the information about Ibrance not having been tried after chemotherapy for MBC is incorrect. It has, and the combination with letrozole or fulvestrant maintains an advantage over letrozole or fulvestrant alone. It's possible that depending on where you are (i.e. if you're outside of the US) the prescribing guidelines are a lot more strict and insurance wouldn't cover Ibrance except as first line or some other restriction like that, but that's different from "it's not been tried". In the US it appears that insurance generally covers Ibrance plus letrozole or fulvestrant regardless of previous treatment.
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piggy, Is there a study other than paloma 2 ? Paloma 2 was conducted on patients with no prior therapy in the metastatic setting ( In my case, I took chemo ). But for paloma 3, it studied ibrance with faslodex as second line and not with femara.
Maybe you started the combo because it’s your first line in MBC, but for me he is not sure about the outcome coz it was not tried after chemo, maybe it won’t benefit much.
I’m not from the US, I’m not insured as well, I pay for my treatments in a private cancer center. so there are no problems with insurance companies and that stuff. I think he would have prescribed ibrance right away if it was indicated for me.
And please If anything i wrote is incorrect tell me because I’m still new in that and not confident about my decisions.
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Tropa-
Piggy is right. I was diagnosed with MBC in January and immediately put on chemotherapy (Gemzar and Cytoxin). When I went in for a PET scan after 9 weeks, it appeared that I had progression. So, they immediately stopped the chemo and put me on Ibrance/Letrozole combo. I've been on that for 2 cycles and thankfully (after a break to get my neut. #s back up) am about to start my 3rd today. My PET scan to see if it's working will be at the end of June.
Pat and IntoLight- I'm so sorry to hear about the loss of your friends. Sending you and their families love and light.
As for the laundry- no one told me that I had to do anything differently, and I'm glad they didn't. I have enough trouble getting any laundry done, much less trying to keep everything separate.
Missy
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Tropa,
I didn't mean to imply that letrozole alone is not a reasonable choice in your situation, or that there is crystal clear data to suggest that you absolutely should have Ibrance - apologies if my post came out that way. I just thought that "it's not been tried after chemo" was a bit of a sweeping statement from your doctor to explain the decision to skip Ibrance at this time.
You are correct that there has been no head-to-head comparison between Ibrance+letrozole and letrozole alone in a clinical trial setting, except the Paloma-2 study where the patients had not been treated for metastatic disease. So, no head to head comparison after chemo. However, there is a poster from SABCS 2017 discussing the clinical benefit of P+L in heavily pretreated patients. (poster P5-21-24; Abstract here: http://cancerres.aacrjournals.org/content/78/4_Supplement/P5-21-24; the poster itself used to be searcheable on the SABCS database, but it's not coming up as a "save"-able file anymore, just as a floating image). The conclusion was just that even heavily pretreated patients seem to derive a benefit from the combination. There is no language in the conclusion that this is better than letrozole alone - I must have added that in my head when I first saw the poster last year, as letrozole alone would probably not be expected to have much of an effect on this subset of patients. Apologies for overstating the conclusion of the study.
Going by the experience of the ladies on these boards, it appears that the US oncologists believe that based on the totality of data, it's beneficial to add Ibrance (or another CDK inhibitor) to hormonal therapy, regardless of prior treatment. The choice of hormonal therapy to be paired with the CDK inhibitor is generally based on what the patient has already received, so for someone who's never had hormonal therapy it's usually an AI, for someone who's already had an AI it's often fulvestrant. Now, of course this is in the context of insurance paying for the Ibrance. If the patients had to cough up 11,000/month, the doctors might be more reluctant to prescribe based on general beliefs and more inclined to stick to benefits proven by clinical trials, as your doctor is doing.
You are in a pretty rare position, reaching NED after chemo and being hormone-treatment naïve, so most data out there won't directly apply to you. Because you have never had hormone treatments, there is a high chance that you will respond well to letrozole alone. The current guidelines http://www.cancernetwork.com/breast-cancer/cdk46-inhibitors-game-changers-management-hormone-receptorpositive-advanced-breast-cancer/page/0/1 do state that even for first line "select patients with a long disease-free interval, low-volume disease, and/or bone-only disease will likely have a long progression-free interval with endocrine therapy alone. While it is possible that they would do even better with the addition of a CDK4/6 inhibitor, patients should be counseled regarding the treatment schedule for the agents being considered, the need for laboratory and other monitoring, and safety profiles".
I hope that letrozole keeps you NEAD for decades!
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Lanzy;
I have been thinking of you and your ovarian cysts. Please read over my posts to get an idea of what I have recently gone through regarding the fear of recurrence of my ovarian cancer happening at the same time as I am being treated for MBC with Ibrance and Letrozole. Treating these two cancers at the same time would have necessitated my MO deciding which cancer was more aggressive and stopping/not starting treatment for the other. The best treatment for ovarian at this point apparently is surgery and chemo which can't be taken at the same time as Ibrance/letrozole. So, I would suggest you talk to your oncologist about the possibility of having at least your tubes and ovaries removed via laparoscopy. I'm not saying cysts are tumours but for me personally your situation gives me pause. Sorry if I am being a scare monger. This is all just so recent for me.
My very best,
Cathy
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Pfizer agreed to supply ibrance to my wife, following her long treatment with xeloda, and I am pleased to say that it has been working. She is getting it on a compassionate basis, paid for mostly by her private insurance, but otherwise would have been paid for mostly by Pfizer.
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curious- have you heard anything about the cancer vaccine? It's immunotherapy are the they inject it into the tumor and it kills the tumor and seeks out any tumor that is the same as the original and killer it. Tested on 90 mice and 87 were cured. They are doing a trial with lymphoma patients first. They tested mice with colon breast and lymphoma.
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Hello everyone, I just did blood test on day 14 of second cycle of Ibrance. the white blood cell is 0.9 and my nurse told me to hold off for the next four days. The first cycle, my wbc was 1.3 on day 14 and 1.0 on day 28. Does this mean I cannot tolerate Ibrance? seems my wbc count does not bounce back quickly during week off. my hemoglobin also low at 97. I will be seeing oncologist next Monday. Was wondering if anyone experienced similar situation and where do you go from this point? Was really hoping can continue on this treatment as IV chemo would be the next thing. Very disappointed. Would appreciate any info you can offer.
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Thank you Jaylea & Penny-78 for your recent advice. Tonight my Onc rang to say that after having the best radiologist at my local cancer hospital review my scans - I am stable 😁. So I march on with cycle 22 of L/I and look forward to many more. I hope everyone on this thread also gets to enjoy many cycles!!
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Hey Holmes! I'm no expert but was just reading about cancer vaccines yesterday, in this story, which highlights a story we discussed when it came out in January:
https://www.livescience.com/62161-cancer-vaccine-t...
https://med.stanford.edu/news/all-news/2018/01/can...
There are so many different kinds and ways, but most rely on killing some significant amount of your own cancer cells to create a minefield of blown up bits of cells that your immune cells can key off on, meaning to mold themselve to bind to whatever cancer-specific antigens (proteins on the surface) that your particular cancer has, and use that priming to go hunting for more cancer cells, where ever they might be hiding. And many want to combine the vaccine with immunotherapy of some kind that can "unmask" the cancer cells that are hiding from the immune system. It has such great possibilities, and I think its heading now into a phase 1 trial.
Other approaches use an off-the-shelf vaccine that goes after common proteins that might be on your cancer cells, but this approach is somewhat different, designed to work no matter how your particular cancer is configured and whatever cancer-specific proteins it may express.
To complement the work, Stanford scientists also created a glowing dye to light up and visualize "activated" T cells, which are the hunter subpopulation in your immune cell populations, so they can use PET scans not only follow the tumors and mets, but also to see how many and where your hunting T cells are located, and to see if the immunotherapy is working or if something has to be changed. The plan is that that new imaging technique will be blended into the phase 1 trial:
http://med.stanford.edu/news/all-news/2018/05/pet-...
The tricky part is to get metastatic breast cancer mets to a point where they can be recognized and infiltrated by T cells. Right now this process works better for triple-negative and HER2, but even those aren't superb responders..
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Congratulations Chico!! Hopefully they don't have to scan so often, now its clearly working for you!!!
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Intolight, I'm so sorry about your friends. It leaves a big hole in your life when people leave but I know time and good memories help.
Husband, I'm so happy your wife gets to do this dance with us! Thank God for Ibrance and for good husbands. I'm sure thankful for mine.
Hope, don't worry for a minute. People here have made all sorts of adjustments in order to keep taking Ibrance. You can lower the dose, do it on a different schedule with more time off, and who knows what else?! I'm guessing you were started on 125mg? My oncologist doesn't even offer that. Everyone starts at 100mg and some (like me) reduce to 75mg. My counts have remained just below normal but the fatigue and nausea were more than I wanted to deal with. Just have faith that you'll find a way! There's a trial at MD Anderson using 25mg....Wouldn't that be nice for all of us?!
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Hands in the air clapping for Chico! On to the next 22 cycles!
PatG
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Hope991, it's not unusual for counts to tank and/or take a long time to rebound, especially on the 125mg dose. I believe the Pfizer protocol in your case would be to delay start of the next cycle until your neutrophils recover to 1.0 AND start at the next lower dose. As Pat mentioned, people are having great results with the lowered dose. The Pfizer data didn't show a difference in efficacy for the patients that had to delay cycles or lower the dose, and the MD Anderson "real world" data showed slightly better results for the lowered dose/delayed dose patients. Maybe not all oncologists are convinced that everyone should go on a lower dose (the better results could have been due to some intrinsic characteristic of the patients that had to have their dose delayed/reduced), but if you're not tolerating the high one, you shouldn't fear going lower. Fingers crossed your team figures out a tolerable schedule and you stay with us on the Ibrance train for a very long time.
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Chico SOOO happy for you!!!
Hope99 as other say there are many ways to adjust — dosage, timing, etc. don’t lose heart!
PeculiarGirl we were glad to hear from m you the other day—please give another us an update when you can!
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thanks Pat, for positive perspective. Actually, I started at 75mg, I am small and my wbc normally low even on other meds, so onc agreed with lowest dose. I hope we can stretch out time off enough to keep me on Ibrance. That is good news to trial at low dose of 25mg. I suppose we don't yet have data from this trial yet? Are you still on Ibrance Pat?
thanks Piggy, Penny, I lost over 20 lbs in last few months, weighing now at about 95 lbs. I hope we can find a good schedule for me to continue on Ibrance. Will try to be more positive. Thank you ladies for your encouragement.
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Seaway - I will stay on top of the cysts for sure, thank you. My MO just moved so as I have a set of scans booked in July, then the next day I have a follow up with my new MO, does this sound reasonable?
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Hope, you don't have to be positive. Just be you and say what's on your mind! I had to laugh because the last time I weighed 95 pounds I was in the ninth grade! The MD Anderson trial is fairly new and includes a drug to keep the cancer cells from working around the Ibrance. I have a good feeling they'll move it along fast if the early results are good.
Love from PatG
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janky: A word from an old retired lady and couple. My husband and I retired 14 years ago after working together 12 years before that. We are having so much fun. You need to give him some space and he needs to give you some space. Plan some fun stuff together that you have been wanting to do. One thing that I find enjoyable for us is finding new recipes. We eat mostly organic but thinking about and executing new meals is beneficial for both of us. I do see too many retired couples who get in each other's way - but assuming you have been married a long time you will find some new activities that you enjoy either as a couple or by yourself and/or with friends. It does take some work but the end result with the right attitude will be successful.
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I had an appointment with my oncologist today. I finished my first cycle of Ibrance (will start my second cycle tonight). My labs were pretty good - tumor marker down (still not in the normal range but I'm not sure if I will ever get there) and white blood count was in the normal range. Don't have another appointment for 28 days. Not sure if that's because my labs were good or because he is going on vacation which he sorely needs.
Love this website and you ladies are the greatest at sharing information and experiences. After almost 5 years with mbc, this is the first blog I have found with useful information specific to my diagnosis.
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Wandering - thank you for your words of wisdom, hubby and I have been married 43+ years (high school sweethearts). Cooking sounds like something we can do together, and we do have our own interests, some similar, some not, so it will work out - he has been solid throughout this last year and a bit, since my diagnoses, so definitely a 'keeper'
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janky: great to hear. My husband has been to EVERY doctor's appointment - 5 years worth. He stayed in the car once with bronchitis so as not to cough everyone at the clinic into hibernation. We have been together 33 years and a long term relationship seems to be very beneficial in both the illness area and the 24/7 area. I am excited for you - you guys will have so much fun.
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Have any of you had pain in your lower right abdominal quadrant? I've had that as well as pain in my mid-back, also the right side. I don't have a fever or nauseua, so I'm hoping no appendicitis. My bowels are moving but I wouldn't be surprised if I'm not completly emptying as I've had some high fiber days the past week. Hoping instead it's strained muscles from deep water aerobics.
But, i'd feel so much better hearing of any experiences of pain in that area while on Ibrance. Thank you!
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Jensgotthis, what kind of pain, and how sharp? I get stomach aches and pains off and on and it looks like we have been on I/F for about the same time. You need to consider the duration...do the pains come and go or are they consistent? You also need to consider your mets. I get middle back pain often consistent with where I originally had mets (but they are no longer active.) Especially when I stoop to do dishes or housework. Since my pains are consistent, my MO notes them but we don't do anything about it. I always err on the side of caution and tell her about anything new. Can you call the nurse in the morning and discuss it? They usually make me go in and see my GP if I am overly concerned, but since you have no fever it is probably not an emergency tonight. I am not a nurse so I can't comment more than this...sorry.
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Interesting new article:
Circulating Tumor Cells To Help Stage Metastatic Breast Cancer, New Research To Be Featured at ASCO Annual Meeting
I guess this makes me a bit nervous (but everything does) that an MBC patient might be deemed by this test to have "indolent" disease and thus be put on a lower/less aggressive treatment, or whatever, and that there wouldn't be proper oversight to determine when the cancer went into actual high gear and needed more aggressive treatment. You surely wouldn't want the cancer to get a "toe-hold" while you were on the lesser treatment. All in all, this sounds very promising to me.
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