Ibrance (Palbociclib)
Comments
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Hi everyone, thank you all for your faithfulness to this site.
42young, I think you and I are on the same page regarding MO feeling that it’s better to stay focused on treatment rather than surgery. I just my finished round of IF. My WBC fell to 3.7 after 2 weeks but MO wants to continue at 125mg , at least for now.
I have a question for those on IF....does anyone have days when the weakness and fatigue allows you to barely function? I had 2 days back to back of it. I had to keep my feet up 90% of the day ! I was going to call MO but don’t want to come off as a whimp. and glad I did as it’s been much better since then
Still weakness is my biggest issue and it comes out of nowhere!
Does everyone go through this ?
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Ginny, I say a big "Yes" to your question about fatigue! Imagine how your body must feel with such a radical change in your WBC. It wants you just to lie down and get better, don't you think?
If you're like most of us you'll find that Ibrance side effects are much less consistent than those with other drugs. Sometimes even your week off won't give you much relief and other times you'll be fine. Last time I was nauseous with major indigestion on the week off and this time I have none of that.
My advice to all friends who do this drug is to be willing to speak up if your quality of life stays low. If you have more bad days than good tell your doctor you want to go to a lower dose. (Don't ask....Tell!) I've said here many times that my oncologist doesn't even use 125mg Ibrance. Everyone starts on 100mg and he sees no reason to change that. He says that just because a certain dose was used in the trial doesn't mean it must be prescribed to everyone.
I pray that you do well, Ginny, and that your strength returns.
Love from PatGMc (On Ibrance/Arimidex/XGeva since October, 2016. Metastatic BC since March, 2012, BC since February, 1994)
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Some of our resident geniuses will understand this (God bless 'em!) but I'm posting it so each of us can realize that all sorts of research is happening to get us closer to less toxic and more curative therapies. "The cure" is not going to come in one fell swoop but with the work of many studies building on each other.
http://www.fredhutch.org/en/news/releases/2019/07/...Let's all pray for the researchers who change the world of cancer treatment one experiment at a time. It happened for polio and many other diseases; it can happen for ours! It WILL happen for ours!
Love from PatGMc
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Hi,
I am new on here. My mother was diagnosed a month with stage 4 breast cancer she first was diagnosed 10 years ago and has now come back and spread to lungs and bones. We just want to say thank you for all the wealth of information you guys post here. It has helped her a bit in dealing with the diagnosis. She has now been on Palbociclib for a month now and this week is her off week.
I am a part of the family and friends section and post there but she doesnt know how to work forums so we signed up together and she reads all the helpful info in this section. Thanks to you ladies we knew in advance that the week off might be a bit hard so thanks to all the ladies who shared their experience with it.
She has lost a lost a lot of weight in the last couple of weeks and we are wondering if anyone has experienced this with Ibrance? She is also on arimidex and an injection every 4 weeks.
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Martt welcome to the board! Sorry about your mom.
I have weight loss on Ibrance...but I also can't say it is definitely from that. I think that the stress when I first found out and all the new meds all contributed. Plus I also cut carbs down and sugar...I didn't cut them OUT just down so I think that also contributed to the weight loss.
Nicole
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Ok ladies...need your help. So for those of you that remember I had my first Upper Respiratory Infection about 2 weeks ago I did a simple 5 days of Levequin, Mucinex for a full 9 days and claritan D.
I still have a lingering cough. I do not walk around coughing all day, but when I do cough it sounds like there is chest congestion in there. I feel fine. I went to the gym twice this week did mostly small weights and machines and about 5 min of slow cardio walk and feel good but this cough is still there??? Is this something that may just stay due to Ibrance or should I be messaging my MO, my next appointment is Aug 5th?
Also...I have been having a really really raspy voice??? I do not have the sore throat most have mentioned on here but my voice sounds like Demi Moore..and the more I talk the more raspy it gets does this happen to anyone else? I am thinking it can be from the little bit of acid reflux (I do take tums sometimes for it) I periodically have from the Ibrance...but the voice has been this way now for a week?
TIA for any and all advice.
Nicole
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thanks Nicolerod,
She has cut out down on eating red meat and chicken so that might also have contributed and yes stress can also be factored in even though she isnt showing it, I can tell she is a bit down on some days. Thank you I hadnt even thought about that.
Ibrance on her on weeks has made her feel a bit nauseous in the mornings when she takes it. She also thought she had a bad cold and her plants in her house were causing hay fever but then I remembered reading on here that some ladies were experiencing this and taking claritin, we went out and got some and the congestion went away. So thanks again for another helpful post we found on here. Other than those two side effects she has been feeling ok.
Im just hoping she doesnt continue to lose too much weight.
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Martt, I take lots of meds and supplements but I take NONE of them in the morning. I've found that my GI system needs to have something in it (more than one small meal) to handle drugs better. I hope she is taking it with breakfast because it needs to be taken with food but maybe she could switch to lunch or dinner. I think many here take Ibrance with dinner. Just a thought on the nausea issue.
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Now that I have lost my group insurance that I paid for thru my past employer, I'm stuck with Medicare and my monthly IBrance is going to be $2500 out of pocket the first month and $922 out of pocket for the remainder of the year. Since I've been on it over three years, my Blue Cross insurance has already paid Pfizer over a $225,000 for my treatments. I'm so saddened that this medicine is going to eat through my savings very quickly that I worked 40 years to save while employed full time. I'm seriously considering stopping treatment and just letting life run it course. I have given up so much since diagnosis in 2006. This feels like the final blow in a long fight and the drug companies win. I guess they are the ones who decide life or death.
Nancy
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marrt,
When I started Ibrance I took it in the morning, but felt nauseous all day. After reading a post here I changed to eating it with my dinner [in the evening, at least 400 calories and a little fat in the meal] . If I wake in the night I sometimes feel queasy, but I have an antacid at the ready next to my bed , which usually gives me relief.
One more piece of advice- try and get your mother to drink lots ;water, whatever, then some more, to help her body cope with this medication. (Sorry to the regular posters , I keep repeating this like an old record stuck in a groove!!)
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Nancy,
I'm sure that others with more experience in this than I will be able to tell you more, but yes, that's the crap that happens when you are on Medicare Part D and not on private insurance. Under current Medicare rules, you have to pay $5150 this year before you get into catastrophic coverage (which is what your $922 payment is) and then they can charge you up to 5% of the monthly cost of the drug or some stupid fee that CMS has established (very low), whichever is lower. However, have you checked with Pfizer about all of this, or had your MO's office check? I was told that if your income is below a certain level ($80,000 sticks in my mind for a household of 2) then Pfizer will help out with the price (there are some other conditions). I would definitely pursue this angle. Also, and I know this doesn't help very much, but I just picked up my first month's supply at a network pharmacy and it was about $200 less than what you were told. I'd look into that angle as well. Also, the pharmacist at Hopkins who works with breast cancer patients told me that Kisquali, a similar drug, is slightly less expensive when you drop down from the highest dose to the second level. Another thing to look into. Good luck. I'm still trying to figure this out too -- ticks me off royally that my retirement $$ is going to pay for this treatment.
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sorry -- as I hit send, I realized that there was an error in what I wrote -- they can charge you the low CMS fee or the 5% of the drug, whichever is higher.
Bev
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Nancy, no, no, no. There is lots of financial assistance for this drug. Co-pay assistance, etc. It depends on several factors which route you take but there is plenty of help out there. I have been on Ibrance for over three years and have never paid a penny. The situation has evolved over my years on Ibrance but we can help you get through this. Too long to post here.
Start with the PAN Foundation. Also go to Pfizer Oncology Together website and look around. Pfizer WANTS you to have this drug. PM me if you want.
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Nancy, I'm surprised you haven't gotten help with this from your MO's office. They usually have a person who deals with this issue.
https://panfoundation.org/index.php/en/
https://www.patientadvocate.org/connect-with-services/copay-relief/
https://www.pfizeroncologytogether.com/patient/financial-assistance
Here are some links to get started. Yup, it's some work but worth it.
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Illinois Nancy,
I wish I could give you a big hug. I come from the UK and we don't have to fight with insurance companies to pay for medical care. No one struggling to live with cancer needs the additional stress that financial worries bring. I hope some of the other american contributors can give you some advice about getting financial support. In the meantime please keep going, don't let those corporate ********s (very rude word) drag you down.
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Agree with Jaycee on the $$assistance. When MO said he’d start me on it, and I saw what it could cost, I was in a panic.
I have a Medicare Advantage plan. I also called Pfizer
My MOs office said not to worry about it, they would handle it. And they have. Staff said there are ppl who donate millions to certain charities and that would cover my copay. Humana is paying over a thousand, this charity around $600. That has put me into catastrophic coverage. Meaning I don’t have copays on ANYTHING for the rest of this year.
But I haven’t paid one penny for the Ibrance.
All this will reset in January. I’m trusting my MOs office, they’ve been doing it a long time. Suggest you call or visit them. Don’t give up..
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Spookiesmom, I hate to burst your bubble but it is Pfizer that "donates" millions to the "charities" so people can get their drugs. What they want is your insurance money. That's where they make most of their profits. Right now, my Medicare part D (Humana) is paying about $12,000 and my grant is paying $634 per month. Pfizer is willing to pay the $634 to get the $12,000.
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This is a real eye-opener. If you want to keep your eyes closed, don't read it. (Foundations make millions, too.)
https://reachmd.com/news/how-big-pharma-uses-charity-programs-to-cover-for-drug-price-hikes/82/
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Well, all I know is what MOs office told me. As long as I’m not going bankrupt and still living, I really don’t care. MOs office did say the donated $$ would run out in the fall, then they would go to Pfizer to cover it.
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Your MO's people probably don't know that the foundations are supported by the drug companies. Most people don't. Your grant may run out in the fall but you could probably get another one. Pfizer is also an option although the income requirements are stricter.
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I’m done.
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I agree that I am really grateful that I am alive and not bankrupt. But it really bothers me that people think it is ok for some to make millions ... no, billions, from our misfortune. Disclaimer on the article I posted above: I have received at least six grants from the PAN Foundation and PAF.
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Thank you all of you ladies for your advice. I have also received great financial help from Pfizer from time-to-time but I am a little scared when we switch over to Medicare Sept 1. We will have the same insurance with Part D that we do now (an amazing thing our past employer has negotiated) and are told the coverage is the same, but I worry about the medicine until it actually happens.
Spookiesmom, I don't understand your post. Do you need to PM me? I am here to talk if you need it. One of the strengths of this community is the support from people who would be strangers but instead are friends because of our common journey. Chris
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Hello All -
Even though Ibrance failed me after 18 months...I still read through your posts and feel close to several of you...
I am off all tx right now as Madame Xeloda did not play nice...very bad reaction...likely liver damage now...another MRI Monday morning with blood draw...then meet with ONC Mobday afternoon to determine what's next.
Waiting...scared...heartbroken...y'all know the deal...
On a happier more beautiful note...My pool was closed for 2 years. It took the pool crew over 4 weeks to get it completely ready for use. I am waiting and enjoying this as much as I can stand....
Sharing with all of you...in case it can help any to escape the madness for just a moment...
Gumdoctor
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Gum... Enjoy your beautiful pool.
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Pat, that’s an awesome story! I wish we had a thread for sharing these exciting research breakthrough.
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Ok I am re posting this in hopes that someone may have some advice
Ok ladies...need your help. So for those of you that remember I had my first Upper Respiratory Infection about 2 weeks ago I did a simple 5 days of Levequin, Mucinex for a full 9 days and claritan D.
I still have a lingering cough. I do not walk around coughing all day, but when I do cough it sounds like there is chest congestion in there. I feel fine. I went to the gym twice this week did mostly small weights and machines and about 5 min of slow cardio walk and feel good but this cough is still there??? Is this something that may just stay due to Ibrance or should I be messaging my MO, my next appointment is Aug 5th?
Also...I have been having a really really raspy voice??? I do not have the sore throat most have mentioned on here but my voice sounds like Demi Moore..and the more I talk the more raspy it gets does this happen to anyone else? I am thinking it can be from the little bit of acid reflux (I do take tums sometimes for it) I periodically have from the Ibrance...but the voice has been this way now for a week?
TIA for any and all advice.
Nicole
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So it turns out that thinning hair makes sitting in 90+ sun watching my kid play baseball during a heat wave a tiny bit more bearable.
Just wanted to share this bit of optimism with my favorite group of dancers today.
Love to all,
Lauren
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Lauren, but be careful your head doesn't get burned. That could happen, right? With less hair?
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oh my gosh, I now MUST wear a hat when I’m out in the sun for a long time. Otherwise my part burns and my forehead (which is getting a little bigger since Ibrance lol) turns beet red
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