Ibrance (Palbociclib)
Comments
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Lindatwo,
It seems that many women here have noticed some hair thinning, but not real loss.
I have naturally thin hair, so mine has gotten very thinon top. I got a wig last week for special occasions. Wear a hat otherwise. My hair had grown back after Taxotere. Weird thing was I did NOT lose eyebrows or eyelashes on Taxotere. I've lost eyebrows now and lashes are a bit thinner. Bummer! But, my wig is cute!!
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Artist - So sorry to hear you are having symptoms again. Did you ever have any luck getting a second opinion onc? As you pointed out, it seems perplexing that your onc took you off of both the Femara and Ibrance and then added a new drug with Ibrance without trying to isolate which of the first two could be causing the side effects. My side effects with lower doses of Ibrance are much less, so if it's Ibrance causing the enzyme rise, maybe you could tolerate lowest dose. I would just hate to see you have another liver biopsy without investigating the possibilities -- especially since the hormonal combo + Ibrance seemed to be working for you, which is great. Good luck. Really hope they get this figured out for you quickly.
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Stefajoy & artist - have either one of you checked with Pfizer in regards to co-pay assistance? It is available to people with insurance who qualify and their co-pay is still too much. I am having to go this route because my co-pay would be $3,200.00 a month. My MO contacted the patient navigator in her office and she is working on it. I hope this is helpful.
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Another source for payment help is Patient Access Network. KU med helped me link up with them. I was eligible because I'm retired. I don't know much about them except KU contacted them, they contacted me and I was cleared for12 months. MBC is one of the diseases they assist. Hope this helps some of you.
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Artist,
Before going for biopsy, please try lower dose of Ibrance. It may lower the enzyme level.
I had also elevated all the three liver enzymes at higher dose of ibrance with unexplaineable sick feelings.
After three cycles of low dose 75 mg (cycle=two weeks of Ibrance, one week off), all enzymes down to normal. Check with your MO
All the best
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Hi everyone, I was diagnosed with mets to the lungs in sept 2015. I am taking ibrance and letrozole. I am finding it difficult to work full time, care for my 10 year old daughter and find time to take care of myself. Has anyone applied for social security disability while just taking the two medications?
Thank you for any feedback!
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Kaption, I know it seems kind of ridiculous to be worrying about hair when you're dealing with MBC, and others that haven't dealt with this don't understand. (People say "oh, it's only hair!) I guess it's not just the hair, it's the whole idea of it being one more thing that we can't control in a life that feels out of control. I feel like I look sick when my eyebrows and eyelashes are missing too. I have a really hard time getting eyeliner that will stay on, I have to redo it 4-5 times a day, even with waterproof eyeliner. And drawing on eyebrows is tricky! My hair is very thin too, and right now with it growing back, it looks like I have male pattern baldness, super thin on top. I have a cute wig too, and don't mind wearing it right now, but during the summer it was brutal! I was hoping I wouldn't have to wear it again this summer. Maybe hats will be okay.
Kaption & Artist, I had a really good run on Faslodex alone. Went almost a year on it, and it was the easiest treatment for me so far. Hope they can figure out what's going on with your liver enzymes and it's not too serious.
If we can get the insurance company to finally approve my use of Ibrance, I am planning on applying for the Pfizer Co-Pay One Savings Program. It says the out of pocket costs are no more than $10. per month and there are no financial conditions, enrollment forms, etc. I haven't looked further into it yet, but will check it out at www.PfizerCoPayOne.com. Has anyone else checked into this?
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Thanks Kaption, we have actually put the biopsy on hold and taken the ibrance away again to see what happens. I will have a weekly blood draw for two weeks to check it out and I do hope this is the problem. I stopped Ibrance two days ago and already the rapid heartbeat has settled down. Interesting huh? So now I am just on Faslodex which so far is a piece of cake....So I hope it works!!! Linda, I was dreading the first of the year too as we start all over again on the deductible. My hair got thinner on Ibrance but isn't noticeable to anyone but me. Moissy, I had a good talk with my Onc yesterday and it seems we are finally on the same page. I mentioned I thought it was not a great idea to start both again and she agreed, pulled me off and agreed we can postpone a biopsy for now. She also said we may be able to revisit letrozole down the road if we find out Ibrance was the problem. junjun, So good to hear you have had experience with elevated enzymes and success with a lower dose. I will definitely ask her about that. So jazzy for now I don''t need to ask about finanacial help but thanks for the advice!
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Lindatwo, I completely agree with you on the hair. When I put on the wig I said, to my husband (who loved it) " I don't look sick!" He agreed. Someone I texted with my picture with the wig said I look like ME!! That made me tear up. Yes, we are dealing with our health, but we want to look like ourselves.
I'm fairly blond, so the eyebrow issue isn't extremely noticeable and I wear dark rimmed glasses, so there is sort of a frame to my eyes. Fortunate to have lashes left.
Nothing wrong with wanting to look nice and healthy.
I am afraid it will be hard to wear in the summer.
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Artist it's crazy you should have to be figuring out what tx to do.( I was always a step ahead of doc also). It's just that they are IN it all day, for me it's so hard, i'm navigating in the dark, but it was always like this, docs or tx, i was prepared before they told us we have to go or do something. AGH! so I wish you now a NOT rocky rd.
Kaption/ Lindatwo - you know Dani went through the same thing. Abraxane wiped out her hair. She puts on bronze everyday, and full makeup all the time, yes it takes her time, she goes on youtube and she gets tips from there how to do her brows and lashes. And she wears a wig all the time. But it's quite light, from real Human hair. When I called Pfizer they pooh pooh it away bt the hair loss, but if it is so, she will be very upset, her hair has been growing back slowly.
Are you Ladies also having BT weekly for wbc? She is scheduled for weekly. And also could I ask what is the number that your Onco would halt tx, how low does it have to be? Deanna explained well how it has to be like all granulocytes have to have certain numbers. Just curious to know what to look for. Thanks
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mommaall - my onc. looks at the neutrophil count and my last one was 1.17. Which apparently translates to 1,170. She told me that as long as my neutrophil count stays above 1,000, I'm ok. I do not know anything about the granulocytes like Deanna has spoken of. Wish I could be of more help.
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Single mom your stiv diagnosis should be enough. There's a five month waiting period and you need your medical records for documentation. Good luck.
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All
When I was on Ibrance my hair thinned out a lot. My MO said her patients on Ibrance had a similar experience so it should be listed as a side effect
Babs
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Game on- Welcome to the thread and best wishes for your treatment!
Lindatwo - My hair has thinned since being on Ibrance and letrozole, but could be due to either med. When I had early treatment several years ago, my hair thinned while on a hormonal treatment due to estrogen reduction. So probably same case here. My eyebrows never came back after chemo and lashes are sparse, so I'm sympathetic. Found some good tutorials for brows on youtube.
Momall - The Ibrance patient literature indicates some specifics for when you should restart/hold or lower dosage of Ibrance. The item they look for is ANC (absolute neutrophil count) and as Deanna mentioned, some refer to it as neutrophil granulocytes. Several pages back are links to the info. I'll try to find it and post to the thread again. The first two months, they normally test 2x during the cycle if all is going well. After that it only has to be done monthly if your blood counts have stabilized. But some oncs do it a little more frequently. Seems every doc is figuring out for themselves what they're comfortable with since it's new.
Single Mom - Hi and welcome. There's a really great older thread about applying for disability. It was posted by a member's husband, who is an attorney. I found a lot of terrific info there, followed it and was approved quickly. If you are stage 4 breast cancer, you will most likely qualify for compassionate allowance approval, which gives an expedited approval based on your scans, diagnosis, etc. I applied online, received approval within a month. You still have a 5-month waiting period from the time you are determined to have been disabled before you will be eligible to receive first payment. The thread is definitely worth a read. Here's the link.
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Momall - If you're into studying up ahead of time, here's some info on Ibrance dosage that may answer some of your questions.
Dose modification chart - Scroll to Section 2.2
Grades of neutropenia - Scroll to line 7 for ANC/neutrophils
Thanks to Shetland Pony and jjski62 for linking to this info originally. It goes back to page 40 of the Ibrance threa
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Thanks for sharing that info, Moissy. As you pointed out, the important line in the "grades" chart is Neutrophils/granulocytes (ANC/AGC), and you just need to be at 1.0 or higher to restart each cycle. When I was @ UCLA on Monday, I did ask the question you had posed a few pages back, and the answer is that it's better to stay with the higher dose, although that's clearly a general comment and may not apply to everyone all the time. She also urged anyone with a concern about dose or low counts to go to a university teaching hospital for guidance preferably from an onc who was involved with the trials, so has firsthand experience with a lot of patients -- even if you just go once and take that info' back to your local onc. PM me if you or anyone else wants more info, although the charts you provided pretty well explain how it should be done.
My hair also thinned noticeably (at least to me due to the handful of hair I was cleaning out of my styling brush every time I washed my hair) during cycles 1, 2 and 3. Thankfully, that seems to have slowed down.
SingleMom, glad Moissy gave you that excellent link! I had applied for SSI when I did chemo for Stage II back in 2008 and got it based on some pretty evident issues that made it virtually impossible for me to function at the level I needed to, such as physical weakness and the inability to solve complex problems or multitask (chemobrain). You shouldn't have any problem since you are Stage IV, but it might also be helpful to detail your SEs in your claim (i.e. severe fatigue or bone pain) to clearly paint the picture of what we experience that makes functioning at the level necessary to do your job so difficult.
artist, glad you're delaying the biopsy. When I first started Faslodex/Ibrance, my local onc said he's had many women on Faslodex alone for years with excellent results. Here's hoping that's what you'll experience if you can't tolerate the Ibrance!
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Deanna - Thanks for serving as a proxy for our questions
I really appreciate it. Will PM you.0 -
Thanks Deanna, that is what I am hoping for with all my might! I wish someone could say whether the Ibrance is causing all this havoc and whether a lower dose might be OK. But one thing at time I suppose. Thanks to all yo ladies for the constant stream of info. It helps me feel more in control of thing and therefore less anxiety.
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artist, thank you so much for your well wishes for me on the androgen receptor thread. I'm thinking of you too, and hoping you get to the bottom of what's going on with you very soon! I can certainly understand your anxiety. Best wishes.
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Thank you very much dib823, Moissy and Zillnot4me! I just looked at the link you sent me and it was very helpful! I appreciate everyone's feedback.
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artist, I seem to recall you mentioning having gotten a second opinion somewhere, but I'm wondering if you've gone to one of the major cancer centers, which in your general area would be UCSF, UCDavis, or Stanford -- especially since this elevated counts stuff has come up. I don't know if any of them might do long distance or phone consultations -- especially since you only have one very specific concern, but I can't help wondering if giving one of them a call could help you get things figured out more quickly. Just a thought...
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artist, I was on faslodex with exemestane, which is an AI and was NED for three years. It seems as though they don't need to stop the Letrazole just because the Ibrance is a problem. I don't know, obviously, but maybe it's something to ask about.
Stefanie
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Deana, thanks and yes I can call UC Davis to consult with that Dr. again. She was very open to offering any help she can. I really truly believe it is the Ibrance and have stopped it for now. Will do labs on Monday again to see if they are going back down. My pounding heart is WAY better already in two days. Stephanie, My Onc says lets stay with the one for now to see if we can isolate symptoms, but that we can revisit Letrazole again. I don't know if she meant together but will ask her that. Thanks, you too Hummingbird! I can understand yours too and I am thinking of you.
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Deanna, Moissy & others - I am so very grateful for all of the helpful information that you post here. Thank you!
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It's so comforting to have the feedback from you ladies. I have a bad cold! but I dream of this thread and share info and life over here.
Moissy thx so much for the links. Yes I do like to read, it makes it look like i have some control, (which I DON'T), but I feel I should be somewhat acquainted with the necessary details. I do see that docs are impressed if you have even a vague idea what they are talkg about. I keep such a hard armor so they talk to me more directly. They know my daughter does not wanna know the details. That is the only way she figured she could deal with it. She went through all tx already, so she's very cynical when they say Oh they have a gr8 new tx!
Jazzy her Lymphocytes and Neutro were low even b4 she started this week, but not that low, and her HGB was off - so yes it's very helpful all the info i read here.
Deanna you know when I called these big places awhile back they were giving me a run for my money, they wanted all records, fine i have that, but they said she would have to be off all chemo and tx for a few wks for docs to see her. I have even the name of the person i spoke to let's say in Anderson. I would love to hear some input as to what is going on that nothing is working for Dani, how do you think I could start this? I keep thinking they are missing something in the DX some kind of cancer type, the 2nd biopsy showed a change in Her status, the third was a blood biopsy Onco claims it gives him info, but we are at Ibrance(which is not even proven to work for HER2+ ) I am very anxious to be perfectly candid. Yes, I hope for the best, and maybe there will be a miracle, but I can't help it and feel this way.
Babs thx for the input about the hair, she is gonna be really sad, she lost her hair a few times, and it was just of kinda cranking back.
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I thought I would share my experience yesterday, trying to re-order my next cycle of Ibrance (my 6th, I think). First, I call Cigna Specialty Pharmacy, my previous source, and am told they are no longer fulfilling that RX, that I have to call CVS Caremark. This was due to a corporate buyout of my hubby's company. Our insurance didn't change, but the way this new company handles the RX part is different. So I dig out the new CVS Caremark cards that I remembered seeing in the stack of unhandled mail on the kitchen counter, and start that process. 15 minutes later, after giving them my i.d. number, name, address, phone number, birthdate, etc., 2x, the very nice customer service rep seems perplexed -- clearly not familiar with Ibrance, and starts questioning if it's a Specialty Pharmacy item (I didn't realize I hadn't called the Specialty Pharmacy division) or if I can get it at my local pharmacy. I tell her what I know, commenting that I don't think my local pharmacy would stock it based on rarity and cost alone, and she comes back with, "Oh, I wondered when I saw it was $44,000 for a 3 months supply." Thankfully, the rest of the process seemed to go smoothly once she got me to the Specialty Pharmacy that sort of knew the drug -- although at one point, after repeating all my personal info' again, and telling them that we needed to be sure to utilize the Pfizer Co-Pay One plan, the 2nd woman I was now on the line with did ask me how to spell Pfizer, to which I reply, "You should know that," before spelling it for her. So then I was asked to contact my onc for a new RX, yada, yada yada, and they will call me back when it's ready and let me know the cost. With all the hold time, by the time I emailed my onc's office, it was a good 45 mins of ridiculousness. Oh, and I didn't like the fact that they asked me what I was taking it for, nor the sudden silence on the other end when I replied, metastatic breast cancer, when the conversation had been quite lively until then.
I'm sharing this just as a cautionary tale! If you haven't ordered your Ibrance yet in 2016 -- and especially if you think anything about your insurance may have changed -- or even if it hasn't -- I'd certainly recommend doing it sooner than later, to allow extra time for these possible issues. I'm still a bit concerned about the cost -- hoping it will be $10 as last year, but realizing it may not be.
MomATT, I think it's great that you and Dani have that "balance" going on, where you can be the detail person if she's happier not dealing with that. As far as the second opinion you sought, of course they will need all of Dani's records, but I've never heard of being asked to be off drugs before an onc sees you. That almost sounds counterproductive. But I haven't been in your situation, so it may not be that uncommon; I don't know. All I would suggest is, check somewhere else. I read because I want to know my choices, etc., but I don't do it to challenge my UCLA onc or because I doubt her. I don't. I totally trust her to the point of going with her recommendations even when they don't mesh with my thinking. With my local onc, it's a bit different. I do feel I need to know enough to evaluate and sometimes question his recommendations, because he's not an mbc specialist. IMO, we all need the kind of onc you're not always questioning and second guessing, and that comes from the experience and specialization they have at the bigger, academic places. Here's a list if you need it. http://www.cancer.gov/research/nci-role/cancer-cen...
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Jazzy - Aw, thanks. I have learned so much on these boards over the years and it is great to be able to share our collective info with each other.
Mom - If Dani's hair is starting to come back in, I really don't think she will lose it all. It just may be thinner than her norm once it comes back in. Some of these things are more noticeable to us and not as much to others.
Deanna - Thanks for the tip on reordering Ibrance. My group number changed on my insurance this year, so I'll make sure to follow up with them on that. 45 minutes on the phone. Yikes!
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Deanna!!! Sounds like we had the same exact day with ordering Ibrance. I changed insurances and finally today it went to Walgreens Specialty Drugs. Express Scripts had me on a wild goose chase. I still don't know the co pay but my insurance says zero. Holding my breath. I just finished cycle 3 and I'm on off week. I personally have worse SE from the Femara and not much from Ibrance except low energy the last couple days of cycle. I also started Charlottes Web and I will see MD for medical marij card in 2 weeks. NYS just got the program going. I don't see much hair loss so hoping Dani doesn't either. My pain has mostly gone except for rib. Ibuprofen takes it away, just wish it would go away.0
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Deanna you made me tear up, you guys are just so incredible. First would it be alright to share your "story" with my SIL, he will get a kick out of it, bcs he takes care of that and that IS exactly what happened to him. He has really no time to go back and forth with this Godzilas of operation, they are fanciful computers talking to you!, His time at work is penciled in for every minute, so I feel really bad with all that he has to mind, that he should get busy with such a nonsense. So sorry you have to deal with that!! The truth be said my hubby(I honor him with the roll!), is the one that deals with optimum RX in our case, do you know that just in the last month they rerouted our prescr. to another county??Can you believe some Joe got MY stuff!!! and they don't even wanna get it back from the wrong place, they are sending new ones, AFTER hubby begged for the supervisor. Crazy.
It was so interesting, the way you put it about"balance" it's the first time that I see it like that. And it's exactly like that. She works at her small business, is a gr8 wife and mom, she prepares most of her food, she just wants to spend the least time possible hearg blood counts, and meds names. Thx for your support.
LovesM - i hear you. i hear you.
Just so you know, we saw the top doc or 2nd from the top(so called) doc in MKCC and ALL he did is tell me how gr8 the other Onco from the other cancer ctr, (which is not in the same league), how good she is. DId you ever?? Did I ask him? NOOO, just wanted to hear what he says, he saw Dani, her papers and he would not give an unbias opinion. True. True. I spend hrs at nt writing a letter in my head to him, of how could he look into the eye of a young woman, a young mom and be such a coward of not giving his opinion but playing with her life due to some very dirty politiking(my word)!! I think i told you the story b4 and at the last convo w her own Onco, I asked what did they discuss about Dani(bcs they both knew we were going to him for AN opinon), which was charged generously to her Ins. btw, and she told me: We did not discuss that, we were discussing WHO should really manage her!! She told him to butt out! And btw at the last visit he asked Dani oh, she did not put you on that tx...or that...yep, but he would not tell us straight out, he said he would confer w the Onco,
Moissy thx - believe me we would never mention a/t to her, but I feel bad for her having to deal with that again. You guys are really wonderful.
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Singlemom, my oncologists said stage 4 is an automatic yes for as I, your daughter will get about half as much as you. I had a lot of sick days before I signed up so I got a check for six months back pay about 2 months after I started getting my checks, good luck.
I also have started losing hair after about six cycles of ibrance. My lashes are short and thin, browse thin and I sometimes loose handfuls of hair, body hair is pretty much nonexistent but I don't miss shaving. I got permanent liner and eyebrows, . I love it.
Marilyn
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