Ibrance (Palbociclib)
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Love your play on words, Susan! I think my hemoglobin is low or I'm dehydrated. I'm still on 125mg of ibrance and it is probably too much. I get labs Thurs along with a sonogram of a big lump under my arm that is pressing on my top ribs. I will tell the doc then. I had an MRI a couple of months ago and they said it was a seroma, but it is getting huge. And its hard. The NP said "that is the least of my worries". I know it's probably true, but I wish she would not have said that. Ugh! I dread taking that trip! Anyway, the real scans are not until Aug 12...
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I'm chuckling to myself because I took my Ibrance last night still hoping it might work. I was officially taken off it today, but interesting enough, Ibrance with Faslodex was on the menu. Soooo, that may be a real option for some of you that haven't had Faslodex yet or if you had it and it worked. It didn't work for me in the past. I still may go that direction, but I'm going to have a PET scan and brain MRI before making any treatment decisions. Going to stay off everything for 2 weeks so I will be ready for next treatment. As a side note, my tumor markers went up, yet again. They have doubled in the past 5 months.
Chin up, Babs! Endocrine therapy can be slow to work, but still effective. Hoping that is the case for you
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Hope, I am so in awe of your stamina. Please don't leave us. You and I are basically the first to be involved in Ibranceland. I will miss you so much. Keep in touch, you have given us so much insight.
Vivian, at the end of my cycle I have felt like I could faint if I don't stop and breathe and compose myself.
Well, I was correct, I jinxed myself with the Pfizer copay and insurance. The $25,000.00 co pay card is tapped out and now I have to thru the appeal process or pay $5000.00 per month. Hahahahaha. Ibranceland is a yuck a minute! Good scan, oops out of money. Amazing.
Good night all, Myra.
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Myra,
It is so frustrating that on top of fighting for our lives against MBC we have to fight with insurance companies and drug companies. It's so wrong for there to be life saving drugs that people can't get. When will this change?! $5000 a month?! Who can do that?! Is it only the wealthy that will be able to get treatment? Sorry for my rant I just think about all the women who will never be able to afford Ibrance and I weep for the injustice of it and feel so helpless.
I pray for all of you ladies on this thread. I pray that you will remain hopeful, without hope what do we have left?
Celeste
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Oh Myra.... I can't imagine they would turn you down for a medication that seems to be working. I hope your doctor puts up good strong appeal on your behalf.
Hope, you started this thread and I found this forum because if that. You feel like the glue here. That said, finding the right formula to slow your progression is obviously the most important thing. I know I'll see you on other threads, or just pop in here and check on us every so often. Good luck!!
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So angry that on top of fighting this awful disease we have to fight insurance companies and put our lives in their hands. Myra it is so unfair that you finally find a drug that is working for you and now it is seemingly being snatched away. Why won't they continue to approve and what is your next step? In the appeal process will you be able to get a month or two supply? Had a sort of similar experience with Afinitor. Insurance denied after 6 months since I am triple positive and it is trally only approved for her2nu -. My oncs office appealed and they gave me two months supply in the interim. It was a stressful process but I finally did get it approved.
Hope I have learned so much from you and am still learning. You are so generous and strong even with the current uncertainty. Your strength will serve you well as you continue to search to find the right drug for you. Please keep us up to date on what is going on and what your next step will be. Since I have been Stage 1V for almost 14 years I've learned that you have to be your own best advocate and push for things you believe. My onc said that sometimes the patient knows best. I know that you will push for continued testing to get the answers you are looking for. I am just finishing my 5th cycle of Ibrance/Femara. So I feel I've been on this path with you almost since the beginning.
Praying for all of us in Ibranceland.
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Thank you for all of your well wishes and support. We truly are all in this together and I'm forging ahead right along with you.
Hope, what specific test do you get for tumor markers?
Myra, I wish you well in your appeal. I had to go through an appeal while having radiation, and had to write many letters on my behalf and many phone calls as well. I got the most help through my MO's billing office. They are on the front line with the insurance companies every day and know the language so to speak. I hope you find someone who can appeal on your behalf. I eventually won the appeal.
Yesterday my nurse gave me a big hug ( and a piece of dark chocolate) and said, " Conquer by Continuing".
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Sorry to intrude on this thread but could just not keep my mouth shut when I read your post Myra! Damn insurance! Not enough that we have to deal with that crazy disease, precious energy goes to dealing with stupid crappy rules. I hope you find a way quickly to have your Ibrance.
Linda
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Thanks gals! Last night DH and I sat down with all our bills and wrote a long letter to the appeals board outlining our monthly expenses showing how this would be very, very much of a hardship on us. This is what the rep from Pfizer told us to do. Luckily, all the 4 months that I got stopped at 18 days, I saved the Ibrance and have 12 pills left and 2 more in this cycle then 7 days off. So I have 21 days to get this straightened out I hope. Who knew you had to be a mathematician to have stage IV cancer?
Good day to all! Insurance companies s**k. You can fill in the blanks. Myra.
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This seems like such a trial for you to get this drug. Have you been told on what grounds you are being denied? Do they even have to tell you this? I am feeling so lucky to be with a non-profit health insurance that is consistently ranked in the top 3 in the country. Hope that this letter, along with pressure from your doctor's office, can push an approval out of this stone.
*susan*
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Myra what you are going through is ridiculous! . Hoping that this is resolved soon for you.
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Myra, what dose are you on?
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Hope, 100 mg
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Myra, I feel so bad that you are going to have to go through all this! Dealing with cancer is hard enough without all of this extra stress! Does your Dr office have any "samples" to carry you over until this is settled?
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Myra- I'm sorry you have to deal with this. I'm betting you will get this approved because it's working for you. I would think your doctor's office would be on the front line making this happen. One thing my onc has pointed out to insurers in the past is that denying this drug will not save anyone money ( and a 5k co-pay is essentially denial) because any alternative that would be next is equally costly- maybe even more so. That, combined with its proven effectiveness in your case should seal the deal. What a headache in the meantime!
Hope- your attitude inspires and amazes me. You know you are loved here and we're all pulling for you. I hope it helps a little bit, at least. I'm so sorry that this combo isn't working, but confident that your team will find one that does. Thank you for everything you have given all of us. You're amazing
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Well it took 6 months and a crash and burn. Specialty pharmacy has the Ibrance and will send it once final insurance approval is in. I think it's probably too late but WTH? Might also do some radiation on neck and back.. r hip. problem areas. Got headaches that won't quit.. must be from my neck, which sounds like rice crispies it makes so many crackles and pops. So here goes into Ibranceland.
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Myra, My story echoes yours...I had the first month of Ibrance on a coupon of sorts. Then two more months with CVS specialty pharmacy...Now the oncology office is going through insurance hell with a preauthorization...I would be hysterical except for the fact that I have a few 125 mg. tabs left from when I started before I was lowered to 100mg. so what I am dsoing is cracking open the capsule and trying to let a little of the powder out to make it a 100 mg tab. Yep that is what I have for 10 more days. Then I will be less than pleasant if my Rx is not filled by then. Have to keep on trying. Carolyn from Music City
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Hope,
Thanks for inviting me into this thread, even though I wasn't stage 4. You and the early contributors to this thread helped me make it through my first few shakey months of this drug. I really had nowhere else to go asI couldn't find any other lower stage people on this drug, except for one other person on this site. I am now finishing up cycle 7 with no problems and have learned so much about getting the side effects of this drug under control.
I wish you the very best finding your next treatment. You are one tough,smart cookie. THANKS again for starting this thread.
Robyn
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I am not on Ibrance, but following this thread because a good friend of mine is and I also might be someday. I am horrified by the struggle some have in getting coverage and paying for this much-ballyhooed new medication. I can't help but wonder what Pfizer hopes to achieve by pricing Ibrance so astronomically that many insurers are apparently resisting covering it. The company, as many do, also offers "qualified" folks a price break with a ceiling, rescinding the offer once a certain amount--relatively paltry compared to the advertised price-- has been reached. This leaves the Ibrance patient who took the deal and her doctor in the awful position of having to find another treatment with no other reason except she can no longer afford the Ibrance.
This seems so wrongheaded of Pfizer from a p.r. standpoint and may engender so much ill will against the company that I can't help but wonder what else can be going on. There's something here I'm not understanding.
Thoughts?
Tina
P.S. Carolyn, I understand why you would have the impulse to break open capsules in an attempt to adjust your dosage, but as someone who knows a little bit about pharmacology, I beg you: please don't. Does your oncologist know?
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My drugs were delivered this morning by a VERY cheerful UPS man. He rang the bell [almost unheard of around here] and then actually just opened the door and walked in. There is nothing on the label that indicates he should just walk into our house, but, that was our first doorbell of the day. Bloodwork is in, and my WBC is back to 4.0, and the rest of the numbers all look fine. The tumor markers usually take about 24 hrs so I am still waiting to see them. I have told myself, in a very stern voice, not to fret about them this month but I don't always listen to stern voices.
The tingling thing has now taken over my hands, and I have little blisters around the palms, particularly on my thumbs where they join the palm. Wondering if I should try one of those balm remedies I have read about on the Xeloda thread.
I have no idea why Pfizer priced their drug so high, or why any of the new drugs demand such high price tags. The new HepC drug is outrageous! I suspect that these insurance issues will disappear when it is "approved" for all lines of treatment, much like many other drugs like Neuprogen which went from frequently denied to routine. As someone who lives in bio-land, I can assure you that all of these companies have lovely office towers and very nice work conditions.
*susan*
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Tina, I agree with you 100%!!! It's like Pfizer dangling this drug in front of us and then pulling it away. This leaves both the patient and the doctor in a bad position. Carolyn, I don't want to be in your business, but I agree with Tina about tampering with the capsules. My bottle has all kinds of warnings on it about not taking the capsule if it is cracked or punctured. I believe it would be difficult to get the correct dose and too much or too little can be dangerous.
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Myra,
I had so much trouble with my copay issues so I know how you feel. How can you be denied a drug that is working? So unfair!!! I found that whenever I had issues, I got my MO's office involved and they were able to turn things around for me. Hang in there!!!!
Babs
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Hi everyone,
Long tough day - got new scans today and had my onc appointment after 4 cycles on 125 mg of Ibrance with letrozole. I was optimistic because my tumor markers declined for the past few months - not a lot, but they were trending down instead of up which was a good change, I thought (wrong). The scans, however, showed progression in the bones, and some fluid around the lung, and a new liver spot. He was surprised I have not had many bad symptoms. The doctor thinks the scans are more reliable than TM's , so he is recommending that I switch - maybe to taxol or a chemo drug (ugh!) since the hormonals only work for a few months for me. I knew the Ibrance was going to stop working at some point (also, it was a 2nd line treatment for me since I had already tried letrozole), but I guess you are never really ready to hear about progression, so it was tough news, and I am not ready to make a decision. He said I can stay on the Ibrance/letrozole another cycle till I decide what to do.
I have been so lucky to have good people helping me - I want to be around as long as possible to help them (and my kids especially need me, and my aging parents). I don't want to be a burden on them and don't want treatments that don't offer quality time. I am best when not thinking of my condition and am busy with other things, but I now must do some research on the treatments and their side effects (luckily I have good friends helping with this as well). I will let you know what I decide.
Myra and car2tenn, so sorry you have this added stress, it is so cruel of them to deny it when it is working for you. I hope you get it fixed soon.
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Holly I am so sorry to hear of your progression. Let us know what you decide to try next -praying the next line of action kicks your BC's butt!
Babs
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Holly,
Oh no.... we all have such high hopes for this drug. I understand your viewpoint all too well. Please let is know what you decide is the best treatment for you going forward.
*susan*
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Holly I am so so sorry to hear of your progression. Definitely not the news we wanted to hear. I know all too well about failing on a drug that was filled with such promise. Please let us know what you decide to do nextt. Hopefully the next treatment will be gentle and provide a long progresion free time.
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Holly- I'm so sorry to hear this. We are all wishing you the best and hoping the next treatment keeps you stable for a long time. Big hugs to you.
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Holly, I am so very sorry to hear about your progression. I am hoping the next tx works well for you. It is so strange your TMs went down and you had progression and mine went up with regression. My MO was so surprised he actually went over the scan bone by bone and soft tissue by soft tissue to make sure it was correct. It was. Another part of this Ibranceland roller coaster no one knows about with this new drug. We are the guinea pigs for Pfizer and they are making us pay thru the nose for this drug. Ironic isn't it?
Thank you all for your kind words. I do not get the reason for Pfizers exorbitant prices either. They dangle the drug in your face and if it works they pull it away so you pay to get it like a drug addict would. The only difference is this is life or death they are screwing with.
Susan, have not heard of blisters with this drug yet. Are u sure this is a SE?
MO switched me to dilaudid for pain since he did not like me having so much acetaminophen, though only 2 mgs. Any one been on this drug? I think I need a stronger dose since pain relief is much shorter than the 5 mg Vicodin I was on, but I am much less foggy and light headed.
Well, my book for today is done. Good luck all and have a pain free day. For those of you awaiting scans, these mixed results I am sure are creating more Scanxiety.
Myra0 -
Myra, I was on Dilauded post spinal fusion surgery. I got hallucinations but I was on IV and high doses. Saw some white monkeys which added to the fun. I use Vicodin or low dose OXY when pain escalates too much. I struggle with balancing pain management and not taking anything, but then I get behind the pain. I've used Toradol that helped for awhile. It is an nonsteroidal anti-inflammatory drug which also helps with pain. Hope you get some relief....and no monkeys!
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Thank you all so much for your help and support, I am continuing to pray for all of you and for your success with Ibrance, pain management, insurance issues, etc….
Vivian, I hope they checked out the reason for the fainting, probably dehydration but could be something else. Do keep hydrating, though, it helps with so many things!
Susan, that is strange about the blisters - maybe it is something else? Hope you get relief.
Thank you again, Hope, for starting this thread, it has helped me and so many others. Praying for answers and relief for you. Your are right, we have to keep up hope - maybe the next treatment can keep us going till something better comes along, as there are new things coming out all the time.
I will let you know all know what I finally decide.
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