Ibrance (Palbociclib)
Comments
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Nicci, in the beginning, the SEs seemed to build for me during the 21 days, so that my 3rd week was the worst for gas & bloating, as well as overall exhaustion. I keenly remember one day walking up a steep hill to an appointment at UCLA and being so winded, I literally had to stop a couple of times to catch my breath -- totally out of character for me. Coincidentally, I walked up the same hill at a fairly vigorous pace last week (day 20 of my cycle) without any problem. So try not to worry about the SEs. It's good to know what to expect, but even if you get some (which you may not), hopefully your body will adjust and they won't be as noticeable in subsequent months.
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I am still waiting for approval from the insurance co. for the Ibrance/Faslodex. My next appointment for Faslodex is Thursday, so I hope to hear something before then. If the doctor's office wouldn't have given me the Ibrance and the Faslodex shots without insurance approval, I would now be 5 weeks without any treatment at all. Sheesh! it's crazy. As far as getting meds from a specialty pharmacy, I had Afinitor and Neupogen both delivered to my house on a regular basis, and each came in a styrofoam ice chest with 6 ice packs. We had quite a stock pile of ice chests there for awhile! I've never signed for them even though that is an option. Our neighbors are not too close, so I've never required the signature. I was always afraid that I wouldn't be home and they would send it back or something and I would have a hassle getting it delivered again.
Carol, congrats on ditching the walker, and being able to get around more. I remember when I was on T/C I was overwhelmed at the thought of walking around Walmart. I could barely make it to the produce dept. and back out to my car. (I also would get a bit frustrated when I watched someone HOP out of their car in a handicapped space while I was having to park far from the front door). Now I am able to at least walk around in Walmart again. Each forward progress is so appreciated these days!
I take my Ibrance at breakfast for the same reason you mention. I haven't really had any issues with it.
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Guys, it's so helpful all the input here.
Lindatwo yes- and also Dani is going weekly for the BT. The grade business from the links I can't really understand. Very confusing for my head. We'll see tuesd. what it will show.
Deanna I am baffled that you are still going through this hoops. Maybe you should insist to spk to a supervisor. Insane you should have to deal with that. Big Huggs for you sweetie.!!
KKsMom terrific news for you. I can't understand why would docs make such a big fuss about Mastectomies and not mention ovaries removal. Oophorectomy/Hystero there is so much estrogen from the ovaries, and also it gives someone more possibilities for different tx. I was devastated when they told my daughter in her mid 20's about the surgery, but I think there was no choice. Her C..is very aggressive. And funny or not, her breast surgeon in a major NYC Cancer Ctr did not recommend her to have a mastectomy. Go figure.
Michelle so sorry you are here. But it's def a very helful warm place
Lalady it's really touch, horrible thoughts keep me up at night, I am always thinking what and if I am missing something that could help my daughter, and I have to think of the other girls too, during the day I could do stuff but in the middle of the night, I am too tired so I take the anti anxiety prescr and I added something else for sleeping, I am not too happy bcs I read these things could really mess with your head, but at this point I don't have another way. I think you should ask for a prescr.
Ellelou yep it's nice.
Let's hope for good scans everyone.
I shall be looking into the other thread about triple positive, bcs since Dani is ER+PR+Her2+ it worries me that Ibrance was not official experimented on that, and I sure hope she is not wasting her precious time.
I read in one of her biopsies results that she would not respond well to endocrine tx. What does that mean? Hormonal? She took all that stuff already. They knew and they let her just waste time???
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Hi momallthetime, I'm so sorry that your daughter has been diagnosed with Stage IV cancer. As a mother, it's hard being the patient myself, but I know it would be so much harder if my daughter was ill. You are obviously doing everything in your power to help her, and I'm sure you are a huge comfort to her. I have a question about which biopsy report said that your daughter would not respond well to endocrine tx. Was it a Foundation1 test or one of the other tests that look for mutations in the tumor? I had an RB1 loss in my Foundation1 report that mentioned that Ibrance may not work for my cancer.
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Momallthetime, I really feel for you. It must be so hard to see your daughter going through this. It is such a burden to feel like you have to be the one to make sure nothing is missed. Even though you are not a trained oncologist, right? I wish she could get a doctor you both really trust, at a major cancer center, so you could let go of some of that feeling of responsibility. I know, we do everything we can for our kids.
Theresa, did your F1 report actually mention Ibrance? My F1 was done before the approval of Ibrance, and I'm wondering if I can get an update. It showed no "actionable targets" but what if some come along? I'll try and remember to ask my onc if they can run the results through the latest list of trials and drugs.
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Theresa it's actually unreal. She was dx stage IV 2 yrs after original dx. She was pretty much on e/t.
ShetlandP we were at a major center, but the last year and half was only showing progression and they got cold feet, and kinda let us know about it, with those eyes like we don't have much to offer. So we took our bags and went to this Center tha tis suppose to be more aggressive. She was on a whole cocktail of stuff for 3 mos, and again not so good news. So now she is in this tx.
I do have a hard time in trusting doctors bcs for one reason or other my whole adult life I was around loved ones that needed medical help, and I learned always to be vigilant and also I do question their intentions. I know too much about this. I also read a lot about medical behavior, and have friends MDs, so i hear what they say also about their own. It's not all Dr. Welby. Remember?? I don't know your age but that was a Doctor.
You know it's very interesting that you asked Theresa about the F1, bcs Dani also had it done, a yr ago, and they did not even talk about that then. I do wonder if they would help find out. But her HER status is the one that worries me now. And, Theresa, the 2nd was a blod biopsy she had recently sent to Guardant 360.
Where it says Clinical Relevance of detected alterations it says that Her2 overexpression in ER+ BC has been associated with resistance to endocrine therapy, ( not directly towards her person, but to the satus)
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Ugh! Just called CVS Caremark Specialty Pharmacy -- again -- and my RX is still pending. Tomorrow is Day 28 for me, and while I've never been able to re-start without waiting a few days and I'm not panicked even if I could start and needed to wait another day or two for it to arrive, I can feel my body reacting to the anticipation of possible ongoing problems to get this straightened out. Deep breaths... The person I spoke with told me he'd mark it "urgent." but based on their slow progress to date, that doesn't reassure me much. Oh, well -- just needed to vent.
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Deanna--there should be a fast track for rx approval for mbc. Call everyday. Ugh!
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I am so sorry! How frustrating Dib823!! Have you requested to speak with a supervisor? Maybe that might help.
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Deanna call this number-- 877 408 9742 and choose the cancer option #5
They are the only ones that can sort this out. I have been on their case since Friday after a runaround everywhere else. It's being shipped today overnight to me. Let me know if this got you somewhere.
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Thank you for that phone number, LovesMaltese. It's not the one I have, so I will try it if they don't get back to me shortly. I know I shouldn't let it upset me, but geez... what else do they need besides the fact that I'm Stage IV and this is the med my onc has RX'd??? I feel like the runaround is so uncalled for and that it's all about the cost of the drug.
Singlemom, thanks. I was going to call back and ask for a supervisor, which I think MomATT had also suggested (either here or on the Bone Mets thread). I appreciate your concern and that will be Plan B if the direct line Loves shared doesn't get some action.
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Deanna
Good luck. This whole journey is stressful enough that we shouldn't have to deal with these other issues!!!!
Babs
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Deanna - So sorry you're dealing with such frustration with your script. Hope you get some resolution soon.
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Deanna, whenever I have pharmacy issues, I put my doctors office on it. I figure that's part of their job. And it usually gets straightened out pretty quickly. Now, if it's strictly an insurance issue, that may be a different story. Good luck.
Stefanie
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Ohmygosh, I won't go into the frustration I've had today trying to get my Ibrance shipped, but I have high praise for the Caremark employee who finally took matters into his own hands and got it accomplished, including signing me up for the Pfizer Co-Pay One program. What an ordeal; but it's finally done. I also got a copy of a letter today that my insurance company sent to my local onc wanting proof that Xgeva is medically necessary, including asking for a boatload of additional information, much of it so absolutely ridiculous it makes you wonder what planet these folks are on. This whole experience has made it very clear to me why so many docs are so fed up with the amount of paperwork insurance companies require these days. It's absolutely ridiculous.
I see my local onc tomorrow morning for labs and my Faslodex shots. Hopefully he will have the Xgeva thing squared away by then, but I'm not counting on it after the exhausting experience I've had getting Ibrance this time. No further commiserating is necessary, LOL! I just needed to vent for my own sanity! I don't know what the answer is, but clearly the outrageous cost of this drug makes those who dispense it pause and want to be very sure there are no glitches or loopholes in your insurance coverage.
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Deanna
I had a great experience with CareMark after the fact that my insurance company had us on a wild goose chase trying to find out what specialty drug company covered it. I went from Accredo to Walgreens and then to finally Caremark who was the one that is approved under my insurance. I don't have a co pay! It was shipped yesterday overnight. You can sign up for texts and emails and when it's shipped they text you tracking number. Glad you got it all straightend out. I hope xgeva goes smoothly.0 -
I am not looking forward to the fight w insurance this month for the Ibrance. Ugh. I figure it's due, as it's a new year. I haven't called yet.
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Cristina, I hope you don't have to fight with your insurance company. As upset as I get, I've found it's always best not to lose my temper. My DH disagrees and wants me to call back every 15 mins. until I speak to the company president, but we're just very different that way. Just leave yourself plenty of time to allow for a potential delay, and if there is one, make them tell you where and why your request is stalled. And keep a log of the times you call and what you're told, so that you can plead your case intelligently using facts. When I was telling my local onc this a.m. about my experience with Ibrance, he said it's gotten significantly worse for them too this year. He also commented that insurance companies have figured out a way to make money on our drugs, and that's part of the problem. I didn't ask him to explain that, but it took someone in his office almost 1/2 an hr. on hold to get thru and finally get my Xgeva approved today.
So my grans were only @ 800 today, which I think is so strange when I started out at 3100 this month due to being sick and waiting some extra time to start last month. It's amazing to me that Ibrance can wipe out our grans that much, but I'm just taking it as a sign it's working. Deanna
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So I get this box in the mail from Pfizer. i am completely mystified. It's the size of a shoe box. Inside is a bunch of Ibrance literature with CDs. A wire bound Journal for recording everything. A purple gore tex zippered case and inside is a super nice pill caddy.
Totally surprised me.
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Hahahaha! I got one of those, too, Ellen, and never have known what to do with it, especially since I'm on Faslodex. It seemed way too cumbersome to use, too nice to throw out, and too "personal" to donate to Goodwill.
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Lol. That pill box was way to big to use!! It's stored in my closet!!0
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Deanna. Glad they got your ibrance straightened out.
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Thanks, Patty. My order just came, and I've got to share what was in it. Someone had recently posted on the FB Ibrance thread about getting this with their Ibrance order not too long ago. Each card says, Keep Calm and things like Happy On, Awesome On, Be Yourself, and Pass The Chocolate. Oh and the instructions say these are morale boosters I can enjoy then tear off and present to friends. Really????!!!!!!
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That's hilarious. They should just send actual chocolate and be done.
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I was on that blasted drug for five months, paid for six, and never got a fancy pill box! Nor did anyone send chocolates. Don't know about you, but I think they could reduce the price of each pill by a few dollars and forget the pill box. Or send a gift card for a take out dinner for those nights that you feel like crap due to their medication.
*susan*
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So true susan_02143!
Also, I never got one of those fancy pill boxes. Booo. just kidding.
Had my blood work today and wbc's were 1.9, up from 1.17, so I get to start my next round of Ibrance.
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deanna. Sweet surprise. !
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LOL, Shetland Pony and Susan. I love you girls. Laughter is truly the best medicine!
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I never got a pill box either. My WBC up to 3.2 and my lymphocytes up to 1.7. M d very happy, no longer able to palpable breast tumor just a little bit of scar tissue. Six weeks ago tumor was size of small egg, thanks letrozole and ibrance. My hair is getting a thin spot up front and my eyelashes are mostly gone but still feeling pretty good. Good wishes for good response to all in ibrance land. Marilyn
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Glad it's working, Marilyn! Sorry to hear about hair and eyelashes, though. Ugh.
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