Ibrance (Palbociclib)
Comments
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Grannax....Did you hear back about a grant? I don't know where my grant originated...just glad it was available.
SandiBeach...What an uplifting journey for you. Thanks for inspiring all of us.
Leapfrog...Glad your cough is better.
Beth...I couldn't agree with you more; but, I'm sure glad grants are available for those who can't afford the co-pay for this drug combo.
I took my first 125 mg.of Ibrance yesterday...so, my journey begins. Now, if only this neuropathy would disappear!!
Jensgotthis....I think I'm in about the same monthly patient figure as you...$$$$$
Hope
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Beth,
The reason Ibrance is so expensive is called greed. It is not a new phenomenon in business. Lots of businesses make tons of money. Big pharma has just perfected the process. Why not make the maximum possible? They give the drug for free to patients who "qualify" and give most of the money that the grant foundations have to support others, who also must qualify. That is a huge tax break for them and makes them look benevolent. Gotta protect their image. The grant foundations have their fingers in the pie, too (such a large pie, why not?) and pay their employees well. One foundation is owned by a family and they employ all family members.
BUT, what should/could I do to protest this situation? I could boycott the drug and not buy it, thus shortening my life. I don't think any of us are going there. I feel slight guilt for being part of a system that enables this behavior, as should doctors and the health system in general. There are patients in Europe, Canada and all over the world who cannot get this drug because of cost. But then, there are many things people can't get because of cost. Food, water, shelter. The problem with this discussion is that it has no end and so people on this thread (and others) don't approach it. We stick to our own simple issues like how to stay alive for the maximum possible time with the best quality of life we can find. Being furious doesn't help, although I get there sometimes, especially when thinking about our friends in Canada.
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Jaycee - I love your reply!! I agree with you and know that I would change the system, but not at the cost of risking my, and others lives, in order to make a statement. I am one of the 'lucky' Canadians who is receiving Ibrance through my Cancer Center, though in reading many posts, it may be that should the Ibrance fail, I may have to pay dearly for next line of treatment - not sure, and don't really want to find out
I am waiting for neutrophils to recover before I can take cycle 3...It is once again snowing like crazy here in Alberta, another 3-5 inches expected!!!0 -
THanks to everyone in this thread and others who are helping us all learn how to live with this beast! Hoping I get a good long time with Ibrance! Am I being selfish for not worrying or thinking of the cost? Yes most likely I am. But I’m alive. I also won’t quit taking it and thus die of cancer.
If that makes mevselfish then I am selfish. Do I wish and pray costs come down and it becomes available for women everywhere? Yes I do.
So I take the meds.
Question: does anyone know any reason why I shouldn’t take Slow FE for my low rbc? Took one this morning
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LAkewoman, how did your appointment with your MO go on Monday
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Good news folks: after leaving Ibrance, Halaven worked miracles for me, the lymph node involvement (which was extensive) has completely cleared according to last Friday's PET scan. Meanwhile, the progression continuing in my right breast has been determined to be a different sort, and localised enough to make it worthwhile trying a mastectomy. I had been hoping to get this breast which is one big cancer lump off of me, so that was good news to my ears. The oncologist was nice enough to call me at home, and will make an appointment for me with the surgeon - he will need to verify the feasibility of this enterprise, apparently there will be an issue of where to get the extra skin, among other things, but I am quite relieved at this prospect. Now I can have my second tire punctured, and go from being an amazon to being a washboard, able to go flat or fluffy according to whim.
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Amarantha, it sounds like you have a good doctor and a good plan but more important, you have a good sense of humor! With all the things I've lost.....the breasts, the ovaries and all their attachments, the tummy muscle/skin to rebuild one of the missing breasts, the delicate skin from "down below" for the nipple (Yikes!), the hair, the muscle tone, the brain power.....losing my sense of humor would have been the most devastating. I'm glad it's still here and I'm glad yours and that of the others here is too. I remember when I had the second mastectomy and needed an emergency prosthesis. Someone had sent a basket for Easter so I just stuffed a handful of that lovely plastic grass into my bra and headed off for church! (I smiled every time it made a sound when someone hugged me!)
I wish you the best as you make the best of this, friend.
PatG
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Heard today from my wife's oncologist, that Ibrance is now approved and funded in our province, Manitoba. However, it is only approved for first line treatment. So that means if you had chemo already for your mets, you are not eligible. Nor will they fund more than one targeted therapy for a patient. So, if you have for instance everolimus, then you are not eligible for funding of ibrance. Sounds to me like the only women that will get ibrance here will be those who don't have visceral mets, as they prefer to treat any visceral crisis with chemo.
My wife continues to have success with Ibrance, paid for by her private insurer, having gotten in under the compassionate access basis. She would not be eligible for it otherwise, as her mets were brought under control using xeloda.
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Gracie-I take SloFe for my low RBC. It helps. My oncologist knows about so I assume there is no interference with the Ibrance. Good luck!
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Thanks for sharing the good new Amarantha! It's so great to hear people doing well on this meds.
I've been on it for 3 cycles now. It was pretty tolerable until now. Not sure if any of you suffer from heartburn/indigestion. I have been feeling pain on and off at the upper stomach area. At first, I thought it was indigestion. Then, I realized that the pain is more prominent when my stomach feels empty. So, I tried to keep the stomach full by eating smaller and more frequent meals. Now, I get the pain/discomfort more frequently. I am not even sure if it's the infamous nausea caused by Ibrance or something else. I remember others mentioning similar symptoms. Is it a side effect? Any remedies you can recommend?
Thanks!
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Chicagoan, thank you so much for the info
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Jensgotthis..
.TY so much for asking about my appt Monday ..Meant a lot !!! Two weeks on Ibrance blood work all normal!! Dr and tumor board, she met with,.not convinced of bone mets in sternum..thus she has decided not doing monthly Xgeva aka Prolia injections for now..
The nodule on my 'Left'over breast.ha!!.was triple negative BC. It is so very small 1.1 cm..but because of aggressive of this I am waiting to be scheduled for a mastectomy..My onc so good she had called a surgeon before we met with her at 9 a.m .She also offered choice of Dr. in Syracuse..We choose the one she mentioned who is local..I can stay on Ibrance and letrozole..for lung involvement .horray..!! Always hated bras..even before mastectomy..prosthetic uncomfortable..Now like amarantha..flat or fluffy on a whim...!!! and flat will work for me..except for a wedding!!.So often I would wear a tshirt .no bra..shirt over that with two pockets..small bean bag in right pocket worked for me among other things..Never thought of Easter basket grass.ha!.My guy said I'll be more balanced.TY to all of you..Healing prayers hugs and love.
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Nonahope, welcome home! You are a unicorn, having left I/F and now returning to us. We'll be keeping you close as the treatment does its good work.
PatGMc, just...thanks. Your posts are like a friend dropping by with a plate of homemade cookies.
Amarantha, great news indeed. Hope Halaven wasn't too taxing on you, and that your DH is doing well.
Thereishope, I remember that cycle 3 was particularly tough. I was experiencing pain in both met and non-met sites. You describe pain in upper stomach area. I felt pain in what I think was liver area (guessing here b/c I've not had reason for liver pain, so don't quite know how it manifests). But everything resolved and mid-cycle 4 I realized I didn't have any sternum pain for the first time in months. Hopefully your pain means I/F is working and what you're feeling is healing.
I wanted to share a good thing. I was selected to take part in a clinical trial for guided meditation. It's an easy phone app that offers a variety of 10 to 20 minute daily meditations on various topics (stress, anxiety, depression, coping with cancer, etc.) I've been at it for 2 months now and find I'm more calm and at peace overall. I still have freak out moments, but they are less frequent and less impactful. The one I'm sponsored with is called Headspace, but there are others on the market. It's a luxury to take that personal time to center and calm the mind.
Hi to all the newcomers, please feel welcome and share your thoughts and concerns.
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Tough 8th cycle for me: At first, I already suffered rather early from my known SEs. But yesterday, I was feeling so weak, I almost could not walk up the stairs in our house. Everything hurt, from head to toe. I was quite devastated about the SEs becoming so increasingly strong. After my sewing class, all I wanted to go to bed. For some funny reason, I measured my temperature ... oh well, it was already 37.8°C (100.0°F) and rose until 38.5 (101.0) in the midst of the night. I called the hospital, but we decided to have me take an ibuprofen and wait until the next morning. I had an appointment at my general practioner this morning anyways in order to get my mid-cycle bloodwork done. After urine sticks being very positive for nitrite, she prescribed my Cefuroxim. I had already taken it at least 10 times throughout my life. However, this time I had an allergic reaction to it (itching hands and feet and urticaria)! So another talk to the doc and now needing to take Cetirizin and a different antibiotic. My fever also also rising again. Funny enough, I am actually glad that it is an infection and not SEs. However, I am not convinced that it is only a UTI, it rather feels like the flu (no real symptoms, just headache and pain all over my body). We will see what the bloodwork results will look like.
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Netta- Hope you can get some rest andfeel better soon! UTIs and flu are Miserable.
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Hope, welcome back!!
I have a first ever PET scan on Friday (as part of my normal 3-4 month regular scans). I've always had CT scans and/or bone scans or MRIs in the past, so this is a new one. My onc said that we'd do the PET this time as a baseline since we hadn't done one before. Any thoughts or advice for preparations? I've just taken my last capsule of my 15th round of Ibrance. So far, so good. Stable with each scan so far. This one is making me nervous because it's different, and I'm afraid it will find something the others did not and throw everything into a "cocked hat".
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Netta, I always feel really bad when I have a UTI so maybe it is just that. You made me feel good saying you were glad it was a UTI. My old MO hatefully said to me once, "I think you want to have a UTI." Well, yes, I did for the same reasons you have now. Better that than something else. And this has a viable treatment. Thank you.
Lakewoman, I have single sided mastectomy. I always thought that would be better than both sides being gone. Not really. I have never done anything about my lopsidedness. For my son's wedding, I bought a $25 prosthetic on Amazon. It was nice, good size and shape for me BUT it looked like a perky 25-year old boob where my real one was a droopy 67 year old boob. I could never get them to match.
Joyner, I've had five Pet scans in my two years on I/F. Just prepare to be bored. Lots of waiting around. I always have my port accessed first for the IV radioactive stuff but most people don't have ports any more. I kept mine for just these kinds of procedures. The hard part is waiting for the results. At first, I just waited for my next MO appt which could be 2-3 weeks away. Since the new year/new MO happened, I call and go by to pick up the results. That will depend on how your MO/hospital handle these things. Since I live near an international border, I have to make sure I get the paper saying I had this test and might be seen as radioactive on scanning. If I travel on an interstate highway by car in any direction from my house, I will soon encounter a border checkpoint where this will be an issue if I am not prepared. I always hang onto that paper. None of this info will help you prepare for this test. Just a little New Mexico entertainment.
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Thanks, Janet!!
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Amarantha...What wonderful news! I know one person who recently started Halaven and she's doing well so far.
PatG...I can always count on you to lift my spirits with your stories!
Lakewoman...I still have my Easter basket filled with candy. Now, every time I grab some goodies and see that grass I will think of you and PatG!
Jaylea...Thank you for the welcome back. I'm just hoping the combo works this time around. The Taxol took care of the BC cells in my bone marrow and my scan in February showed improvement in some areas. I tolerated the Taxol well, until the 12th infusion. I had a total of 15 infusions and the neuropathy is horrible. I barely sleep at night due to the pain/burning in my feet. Walking is very difficult because of the numbness - it really throws me off balance and I always have the sense of falling. I'm taking Gabapentin which will, hopefully, do its job soon.
Your clinical trial of meditation sounds wonderful!!Netta...Feel better soon.
Lynn...I've never had a PET scan. LIke you, I've always had CT's and nuclear bone scans. Hope it goes well for you.
Hope
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Netta, UTI's can make you feel really miserable and run down. I wanted to lie down on the ER floor when I had my last one, I couldn't even stand sitting in the chair anymore (and this was many years before cancer). The good thing is that antibiotics work very fast to make you feel better.
Joyner, good luck with your PET scan! You should have gotten a sheet of instructions from the doctor on do's and don'ts before the scan (the main ones were to not have carbs the day before and the day of and to stop eating and drinking anything except water 4-6 hours before the scan). The radioactive glucose infusion and the scan itself are not particularly unpleasant (better than the noisy MRI!) but I had a massive headache from the lack of breakfast and coffee by the time it was done. Fingers crossed for great results!
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Joyner, I have only had PET scans (and one MRI) and they are no problem. I don't have a port but the infusion is no problem either. Take something to read as you will sit for 45 minutes after the infusion before the scan. They are easy. Rest, and think pleasant thoughts while you are being scanned. Drink lots of fluids before and after. They take me to the restroom between the infusion and scan (special restroom!) so I sometimes take water with me while I am waiting, but you might ask. I got a PET every 3 months the first year but now I am scanned every 6 months. Sending positive thoughts!
NettaGER, feel better. I struggle with UTIs too and they are no fun, and I hope the flu passes quickly for you.
Thereishope, I suffer from heartburn too. My MO took me off of omeprazole and put me on Pepcid and it has been a rough ride, but things are finally settling down. I take one in the morning and one in the evening but hope to go on one only soon. I also take a Tums as needed. Small meals help. I have also adjusted my diet and removed spicy foods for awhile which is a pain as I live in San Diego and Mexican food is a staple here! I am learning to cook everything mild and provide lots of hot sauce for my DH at the table.
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Lakewoman - I too have a single side mastectomy and what I do to look 'equal' is wear my prosthetic then, over my droopy 64 year old boob I place the insert from a swimsuit or lined bra, and place it over - seems to help with 'balance'
The things we do...humour in all things for sure! Sun is shining! 0 -
Hey, everyone
Oncologist told me yesterday that he'd be starting me on faslodex shots and ibrance pills pending biopsy results. Just looked it up and my copay is going to be $100/month for ibrance, and $125/month for faslodex. OUCH!! I know I need to be grateful for insurance, and grateful for drugs that will help me stay alive, but it just seems like that's adding insult to injury. Can't wait to go home and tell my husband.
Kathy
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Kathy, check out the Pfizer web site and access the co-pay resources. I get my $150 co-pay covered since I am privately insured. I just send in my receipt and a copy of the PfizerCo-Pay One card. If you can't find it, PM me and I will send you the link and more info.
Chris
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Peculiargirl, I second IntoLight's recommendation to look into the Pfizer co-pay card. It only took a couple of minutes on the Ibrance website to get it, then I gave the information to the specialty pharmacy when I filled the first prescription and voila, copay became 0. Best thing is that they saved the information, so I don't have to do it all the time.
Looks like there might be a similar program from AstraZeneca for Faslodex (called Access360). Seems like for this one you have to call, but it doesn't appear to have any income requirements.
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hi Joynerl, I have had four pet/ct scans. personally not a fan as they put radioactive sugar into the blood. my onc likes the pet/ct scan. I think it is more sensitive and will pick up more. you need to fast before you go in, so morning appointment better if you don't like being hungry.
i have had bone scans before and this one you sit and wait less time, 45 minutes about I think. not hard to do. you got to drink lots of water afterwards. good luck.
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Thanks so much to everyone for the input on the PET scan coming up. I have my instructions from the hospital, but I remember in the past reading some guidance from others from their own oncs. For instance, I haven't been asked to avoid carbs the day before, but I shall...thank you! I want the best and the most accurate reading possible, for obvious reasons. Thanks, girls (and boys!)! Fingers crossed.
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Hello, friends.
Re: the PET/CT scan. I've been told not to exercise within the 24 hours before the scan (Not a problem! Ha!) because you can get a false positive in muscles. No intake except water after midnight. I'm a tough stick so I do get my port accessed. After the first injection I'm put into a dark room in a reclining position with music for one hour. No reading and no phone. It's delightful! They provide bottled water and I get to go to the restroom right before the scan. Whatever they inject while I'm on the table gives the sensation that I'm peeing on myself...so weird. My hospital posts the results a couple of days later in my online chart or I can wait to see the oncologist.
Re: Indigestion. I certainly have less of that on the 75mg but it was sometimes rough on the 100mg. Over the Counter Pepcid after dinner (when I take the Ibrance) is helpful. I take Tums right before sleeping and again in the morning. I find that the more I eat Gluten-free, the better I do. Also drinking lots of water makes things better. (Powdered Sugar Donettes are the worst thing for indigestion but sometimes a girl's gotta' do what a girl's gotta' do! They may also shorten my life but again, a girl's gotta' do..........)
Hooray for all the good scans and for those of you able to return to this Ibrance dance. I'm thankful to have received Co-Pay grants which will see me through another 5 cycles. One foundation paid to get me through the Medicare Donut-Hole and then denied the rest of the grant but another stepped in to cover 8 more cycles. My co-pay is over $600 a month so I'm really happy. I'm thankful for the free year Pfizer gave me and for all this other assistance. It's staggering to imagine having to pay for Ibrance and XGeva each month (over $20,000!). Private supplementary healthcare, Mututal of Omaha pays for the XGeva in the doctor's office and Pharmacy Supplement, United Healthcare pays the whopping $7 for the Arimidex. Wouldn't it be funny if the Arimidex is actually what has caused the remarkable response?!
Have a happy day, friends! Spring has finally sprung in Memphis and I'm making an art piece called "Itty Bitty Elvis & the Band....What You See When You're Up a Tree and Straight-Up Crazy...on a Tuesday...in America". (Tiny Elvis is performing in a nest with Hummingbirds backed up by Abe Lincoln on guitar! All this with no illicit drugs!) It's for the LRoss Gallery Elvis Show in August. You should all come and we could do the Ibrance Dance together!
Love to all of you!
PatG
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I too am single sided and have found that using a swim prosthetic, which is itself very soft and not perky at all, balances me out quite well. I like this Anita swim prosthetic (linked). It's also very light, it smushes when you hug someone, and it doesn't seem to hold heat
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My advice for the PET scan - don't wear ANY metal. The first time I had on jeans and a regular bra - not thinking that the bra's hooks were metal. I had to take off everything except my underwear and wear a gown. I HATE hospital gowns, and I especially hate lying flat on the table wearing just a hospital gown! So now I wear jogging-type pants with elastic waste and a sports bra under a t-shirt or sweatshirt, and I hop right up on the table, fully dressed. MUCH better!
That hour's wait before the test is always a nap for me. Every single time, they've had to wake me up to go into the test room! Then I'm drowsy, so sort of drift off during the test as well.
It'll be easy, nothing to it!
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