Ibrance (Palbociclib)
Comments
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Hi Bevjen,
Thanks Bevjen. Yes I am still doing the COC protocol along with I\L. I only take 40mg instead of 80mg of Atorvastatin though.
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Great news Simone! Thanks for sharing.
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Simone, woohoo! Good to hear great news!!!
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Wahoo Simone!!
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Wandering: I am a nutritionist and specialize in oncology nutritional support.
There’s an INSANE amount of contradictory information out there. Please don’t let it stress you out. Remember these main things:
1) when we eat, we use all our senses - touch, taste, Smell, the sight of our food maybe the sound of the food cooking etc. for this, let’s eat food that pleases our senses. Period.
2) eating should NOT be stressful.
3) I am not giving medical advice here but just based on what you have written, if you’re losing weight unintentionally because of the ONJ and difficulty eating, Id be less concerned about what I was eating food-choice wise and more concerned about getting enough calories and making up it food as enjoyable as possible since it’s already difficult to eat. What foods do you love to eat? Let’s start there. What foods are easiest for you to eat?
As far as your husband, you may have to clearly tell him to not speak during your next appointments (and I mean plural) and he needs to give you the space to share ask and process. I’m sure he loves you and is protecting you on some level, and probably has no idea he’s doing this. And he needs to be let known, clearly and gently and firmly. If he can’t respect your wishes, then he can wait for you in the waiting room. I have actually kicked my mom out of the room because she was not being helpful and was taking up my time. As Maxine Waters said, “Reclaiming my time.” This is the time to act selfishly. Hubby will be okay!
Sorry to go on and on but I feel for you and part of the crying is being disempowered at your appointments as well as that you may be hungry and needing more calories. I cry when I’m hungry all the time! I get really loony.
And in my medical and well-researched for many years opinion, NO sugar does not cause cancer!
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Thanks for the Congrats!
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congrats Simone!!!! Hope you take some time to celebrate 🎉 💓💓
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Simone
do you think it is the Ibrance combo or COC protocal that helps with NEAD?
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congrats Simone! I wish I could say I was in the same boat but it looks like I might be leaving ibrance. My most recent mri shows a local recurrence in the left breast again. My bones are quiet but my OC seems ready to move to something else. I had really hoped there would be more time, and I’m pretty surprised that this feels as bad as the original diagnosis - I thought I had gotten stronger.
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Imagine,
I\L on its own is a powerful combination when it works. I take a few other supplements along with the 4 repurposed drugs in the COC protocol and I do think it helps. There is another thread for the COC protocol if you want to get more info. There are a few of us on it.
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mshar,
Sorry to hear that. How long were you on ibrance? Several women have said that it feels worse when you move off your 1st line of treatment then the initial dx so you're not alone.
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happy for your Simone
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Woohoo Simone !!!!!!
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mshar, I'm sorry to hear about your news - I think Simone80 is right, first progression probably feels worse than the original diagnosis, because it somehow makes it more "real". I'm guessing, from your use of "OC" instead of "MO" that you are not in the United States, so I'm not sure how much say you have in your treatments, but it might be worth asking whether the doctor could consider local treatment for the breast recurrence and keep you on Ibrance, since it seems to be doing a good job keeping the bone mets quiet. My own oncologist suggested that this would be something he would seriously consider upon any kind of "localized" progression, to make sure we squeeze as much time out of each treatment as possible.
Good luck moving forward!
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Hi all..Regarding statins..I read this recently https://www.webmd.com/drugs/2/drug-167704/ibrance-...
Spoke with my cousin doctor..at annual physical. My cholesterol blood work good or borderline for years..She okayed going off it but said to do it very gradually or you can have stroke or heart attack..Told MO.. She said okay also..
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Great news Simone!
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Yeah, Simone.
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Simone
I was on the COC protacal while my tumors markers were increasing and they we scanin g every couple months until it showed up in chest and pleural area. So I stopped. Now on Ibrance and Falsodex. Hoping for good response. I can go back on COC also but didn’t want to not know what is causing side effects. My MO says you can’t take Ibrance with statins.
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Thank you SondraF!
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Congrats, Simone !! 🎉🎊🎈
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Yay Simone!!!
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Thanks everyone for your support.
Hi Imagine,
I understand that ibrance and some statins use the same liver enzymes to breakdown the statin. I know some people have issues taking statins. Maybe you can take the other off label meds and use something else in place of the statin. COC should be able to recommend something.
I take ibrance in the morning and the stati n at night before bed. I monitor my AST and ALT numbers on my blood test and those have been normal. I also throw in a few off days
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I'm so happy for you, Simone!
Love from PatGMc
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Huzzah, Simone!!!
mshar, agree with Piggy- ask if you can zap the local recurrence and keep going with the I-F!!
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I'm on my 2nd day of starting back on Ibrance after six months off. I've gone on Medicare since I was on it last and was afraid of what my co pay would be. I have blue cross blue shield and a part D. My co pay was 3.64. I had heard that co pays for Ibrance were very high and that Medicare can't negotiate or allow Medicare recipients to get help from patient assist programs. I'm just wondering what other's experience has been. I don't know if I should worry about what next month's co pay will be.
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Elenas, I am also on Medicare and I have Kaiser. My co-pay for Ibrance is $13.24. This has stayed the same for the past five months I have been on Medicare. I don't expect a change.
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Thank you, I'm glad to hear that it's stayed at that price for you.
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Yay Simone! And Jaycee, and Faith, and Jackie!!! Just getting caught up again. I am always so thrilled by such great news!
I've been steeped in the college application process with my twins, which feels like a miracle since I was diagnosed shortly after they started high school and I couldn't have imagined living to see this day.
And caring for our cat of 12+ years (we inherited him from my Mom when she died of BC) in his final days. He was at my side purring through every stage of my illness and recovery. His diagnosis with cancer before the holidays threw me and his very sudden turn for the worse last week hit me hard on a few complicated levels. I'll just keep picturing him in heaven on my Mom's lap.
Hugs to everyone!
Penny
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Elenas,
I have Medicare, a Medicare supplement plan, and part D. My experience has not been the same as IntoLight. Although the Part D programs must cover drugs like Ibrance, that does indeed come at a steep price. I paid my first copay at the very beginning of January and my copay was $2700. This was somewhat consistent with last year, when I first went on Ibrance. Subsequent monthly copays were around $570.
Scroll back through this thread and look for information that Jaycee has posted about getting assistance with copays. Pfizer also does this directly. However, all of the organizations that provide copay assistance have an income requirement, based upon your adjusted gross income from your taxes. So it's worth it to make the inquiry of a number of these organizations that provide assistance. Also, your oncologist's office (or cancer center) should be able to provide you some assistance in this regard -- please ask them in advance.
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BevJen, it looks like Elenas doesn't need any assistance since her co-pay, even in January, was $3.64. Mine is like yours, about $2500 in January and $634 the rest of the months. My first shipment this year is coming Wed. I'll see what the money situation is then for 2020. Assistance is certainly available if you are on Medicare. I have gotten it from the beginning. Elenas, are you sure your MO's office didn't get you some kind of assistance? That co-pay is just too good to be true. If you are really paying $3.64, I will look into changing to BCBS part D next year.
Intolight has a special set-up from her employer. Isn't that why yours is so low? It's amazing how the prices can vary so much from state to state and insurer to insurer.
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