Ibrance (Palbociclib)
Comments
-
Melanie, Go to this site and it will tell you all about Pfizer's co-pay. My insurance dictated what speciality pharmacy I had to use, but it went well and Ibrance was delivered to my home. I'm sure your MO knows about this. If you aren't on Medicare then you most likely will have the $10.00 co-pay.
Joyner, I heard Medicare was not part of that plan and understand it can be quite a bit more depending on income. Friend of mine pays $2,700 a month for Ibrance on Medicare.
www.ibrance.com/financial-assistance
0 -
Currently I am getting samples from my doctor's office while they try to straighten out a grant from a foundation I had found that they didn't respond to before my time limit ran out. Since I'm on a medicare advantage plan, I would pay 40% until I came out on the other side of the donut hole which is less than $5000, or one or two copays of prescriptions of Ibrance, at which point my insurance covers it all. At least they said they had permission from my insurance company.
0 -
A follow up to my post about my hot flash silver bullet for Ibrance ...
Hesperiden methyl chalcone is a flavonoid extract of citrus like grapefruit. the compounds in grapefruit that interfere with the metabolism of ibrance, and causes the effected dose to INCREASE, are the furanocoumarins more than the flavonoids. However, high doses of these flavonoids might conceivable interfere with ibrance metabolism (break down/digestion) and increase your effective Ibrance dose. Watch your ibrance side effects. if the side effects increase, you might consider dropping your Ibrance dose or dropping the supplement.
There is something in my (extensive) supplement dose that seemed to exacerbate my Ibrance symptoms this spring. Could have been anything, but I do take Hesperiden. I chose to drop my Ibrance dose because I am committed to my complementary strategy.
MelMcBee - Hormone receptor positive breast cancer has been controlled for many many years with straight up hormone suppression ... letrozol/faslodex. Pfizer targeted first line therapy for Ibrance, but marketing certainly played into that decision. I believe Ibrance may be better later on and there is a new CDK 4/6 inhibitor coming out that has been shown to kick butt on its own AFTER chemo. I am not sure how effective it will be if you have already taken Ibrance.
This is a marathon not a sprint. If you don't get the CDK 4/6 inhibitor now, there is a decent chance this class of drugs will be available to you later, and as effective or more effective at that time.
The first oncologist I saw did not want me on Ibrance. She prescribed letrozol alone. I thought she was wrong at the time. Not sure any more. In my mind, one could go either way. In your shoes I would push a bit to get the Ibrance, but if you don't get it, do the hormone suppression and know that you have an Ace in the Hole down the line. It's not a black and white thing.
>Z<
0 -
Thanks Lindalou for the link. Thanks Zarovka that makes me feel better. Sending gentle hugs and prayers to al
0 -
If you're on Medicare, you can't get the $10.00 copay card but depending on how much your social security income is, you could qualify for free Ibrance under their patient assistance program. Check their website or ask your onc's office to help you.
I'm glad to hear there are at least some of you enjoying wine with me. It really is about quality of life too and a glass of wine in the evening is one of my enjoyments that I really don't want to give up. We've given up so much already. It's just one more thing that reminds us we have cancer if we have to turn down a glass of wine.
Cheers, Faith (in the future)
0 -
Most of the time I prefer a beer to wine, although not always. Perhaps that's good because I have a beer budget.
Right now my MO's office is working on getting someone to pay the approximate $5000 it takes to get me in and out of the donut hole with my medicare advantage plan. I was perfectly happy when my MO tried letrozole alone first. We got 18 months out of it. Now hopefully I'll get that much at least out of faslodex/Ibrance. I really thought I would just go AI to AI so it was quite a surprise when MO argued with me about it. Currently MO's office is giving me samples of Ibrance.
0 -
Hello! I know this section is limited to MBC members only, but I'm hoping you'll allow me to ask a question as a surrogate for my SIL, at her request. My SIL was recently diagnosed with de-novo MBC. She was awaiting breast biopsy results when back pain sent her to the E/R and an MRI detected substantial metastatic disease in the bones with a pathologic compression fracture at L3. Fusion surgery was done to stabilize the spine at L3. A PET scan also showed several masses in her liver. Her breast tumor is ER+, PR+, HER2 -
She underwent radiation treatment for her bones and began taking Letrozole. Recently Ibrance has been added to her Letrozole TX, which is the source of the question. Her WBC and ANC had been somewhat low (2.3 and 1.3 respectively) following radiation therapy, but were rebounding. Her Dr. at the time had nixed Ibrance due to her low counts; however her new Dr. at the Mayo Clinic thought it was appropriate. My SIL just completed her 1st round with Ibrance and her ANC dropped to 0.36, which is grade 4 neutropenia. Her platelets are 100, WBC 0.8. I reviewed the drug dosing literature which indicated that Ibrance should be discontinued at grade 4 until recovery to Gr2 then re-started with a lowered dose. She was taking 125mg. At her F/U visit the NP didn't seem overly concerned with the critical counts and said they would start round 2 on schedule with a lowered dose of 100mg, as long as her next blood test showed ANC at 0.5 or higher.
My question is if anyone here has continued Ibrance with GR 4 neutropenia? And if so, were any specific safeguards/precautions advised? Thank you for all the support you provide!
0 -
Openmind, You are a good friend to follow up with these questions. I did experience GR4 neutropenia during my first cycle of Ibrance. My ANC was 0.4, my WBC was 1.0 and my platelets were 70. My MO did not allow me to start back on Ibrance until my ANC was 1.0. It took several weeks for that to happen, and my dose was reduced to 100 mg for cycle 2. I have to admit that I am a bit surprised that your friend would be allowed to start the next cycle as soon as her ANC is up to 0.5. My MO never lets me start a new cycle if my ANC is less than 1.0. That has meant a two week break rather than one week several times. That strategy is what I have read in the dosage guidelines.
Lynne
0 -
the rule is that if your ANC drops below 1 on the day before you are supposed to restart the protocol, you should delay starting. And if the the ANC stays down chronically, you lower the dose.
So it depends exactly when they took that blood test. The doctor may be using his/her judgement about what is going on if the test was not taken at the very end of the week off.
I have seen doctors keep people on high doses with neutrophils as low as .5. Mayo clinic was one of the original test sites for Ibrance, so you may have a doctor who really knows what he is doing. I wouldn't hesitate to follow his/her judgement if he/she has a lot of experience with Ibrance. The truth is that low neutrophil counts don't seem to increase the risk of infection.
Finally, the data from the trial did not show a benefit to staying on the highest dose of Ibrance. 100mg is fine. Many people do well on 75mg. How much ibrance you actually get in blood plasma (the effective dose) depends on how your body metabolizes the drug. This is highly variable among individuals. All in all dosing is a crap shoot. Sorry. It is what it is.
What would I do? I would proceed on the lower dose and let the Mayo onc call the shots about what her blood ANC means. What they are saying is reasonable. I've seen other doctors do that. As long as you are supervised by someone very experienced, I would not have any problem ignoring the Pfizer guidelines.
I live in the middle of nowhere and my onc is solid, but not a research onc. Fortunately, I haven't had serious problems with neutropenia, but when I did I followed the package insert on my own initiative. Last December my ANC dropped to .8 during my week off, so I delayed starting the next round on week. I was going on vacation anyway and I give myself a break on vacations. I recovered nicely and had some of my highest ANC readings the next two cycles (1.6!) but the side effects other than neutropenia were building so I cut my dosage from 125mg to 100mg. I am starting cycle #17 on 100mg feeling a bit better.
I wish your SIL the best. It is quite scary in the beginning but it becomes a lifestyle after a while. A weird lifestyle. One I would not choose, but basically okay. We have lots of options and I trust your SIL will do well for a long time, especially with your proactive efforts to get second opinions. These are key. Cancer is complicated and the landscape is changing rapidly.
>Z<
0 -
openmind~ Having read what Z has said. I agree with her completely. I live in the burbs of philly and I have been to all of the hospitals in Philly for opinions. If they are allowing her to start the second round, then they feel at the time the blood work was taken, they may feel she will have recovered enough to support the medicine. They would not allow her to start the second round if they weren't sure that she would rebound ok! They will choose to monitor her blood work perhaps starting weekly then to bi weekly until her system adjusts to the new toxins entering her body. It actually is a good sign to know that her own cells are in battle right now and that is another reason they could be lower. It is a new recently introduced toxin and they are like whoa. What is this.??Attack!!!! They know what they are doing at the Mayo Clinic. My onc works hand in hand with the cancer center of America and if the blood work doesn't rebound within the next two blood works to their liking they may either A) delay a week or so and get another blood test or
lower the dosage to 100 and see how her body and counts react. She is in good hands with mayo. They are very closely in tune with the standard of care protocol and allowances of blood work readings from this medicines (and all medicines) through NIH (national institute of health) strict guidelines. She will bounce back and be running like a fine tune engine, right now she's just having a Tune up , once she adjusts she will start to naturally adjust to what's entering her body. Right now it's still a foreign substance that has invaded her system. She should rest as much as possible and hydrate well. Also keep her away from sick people and to be honest outdoors, Because the pollen is horrible in some areas and can cause a constant irritated inflammation to her system. I can promise we will all add her to our prayers. I was also stage four at diagnosis. I know how it feels, a lot of us do. You're a sweet angel to care for her so much. She's lucky to have you. Keeping everyone close in prayer. ~M ~0 -
Dear 50's girl, Z and Micmel, thank you so much for your replies! This blood test was taken at the very end of the 1st cycle and they will take another after her off week completes. Hopefully her numbers will be higher by then. I was just surprised when they indicated they would continue even with an ANC of 0.5, although they acknowledged they would prefer it to be 1.0 or higher. I feel significantly more comfortable after reading your comments. I should add that despite all of this my SIL is doing quite well and other than fatigue feels she is tolerating the treatment well, thus far. I cannot thank you all enough for the community, education and support available on this site. After the shock of processing the initial diagnosis, my SIL asked if I would act as her medical advocate. I'm committed to doing my best in researching and assisting her any way possible in navigating the "new normal". I can't tell you how invaluable all of you and this site are in this regard, thank you!
0 -
Openmind - this is a good place for you to hang out. You are very welcome here. You will find a few caregivers here. You do a great service for your SIL. She is lucky to have you. I do think it's better, if you have the option, to let someone deal with the medical stuff. Your SIL's #1 job is to live well. It takes quite a bit of work with all this going on.
>Z<
0 -
I'm on day 10 of my first round. My meta is in perotineum and producing fluids around belly and lungs, so breathing is my biggest challenge. But, after 10 days, it hasn't been any worse than before. I've learned one thing...when they say take it with food, they mean it. One day I didn't and I suffered for it. I don't have severe nausea (occasionally just a twinge) but had the runs. Follow directions and best of luck to you in your treatmen
0 -
Hello Everyone - just a quick update on my stupid stomach issues and my recent surveillance scans. The weird bloating and distension has finally subsided. I still don't feel normal but I am no longer in such discomfort. I have no explanation. The scans and blood work showed nothing. The doctors have no explanation. So chalk it up to a mystery episode of something and I suspect I will see it again and we'll go from there.
Now to the scan results. I had my usual ct scans of abdomen, pelvis and chest and a bone scan. In addition I had a ct scan of my neck (I've been having neck pain so my doctor offered to check it out on the next ct scan). I also had an MRI for my liver since we are keeping an eye on a small spot (5-7mm in size) that keeps appearing in the ct scans but is too small to identify. My oncologist tries to assure me that she has never seen someone with a single tiny liver met and have pristine blood work. At least she doesn't dismiss my concerns and makes sure to monitor it with scans. I love my oncologist! At any rate - my bones are stable. Yay! Nothing new has appeared anywhere else. Yay! BUT there is that damn spot on my liver. It's still there and has grown from 7mm to 13mm. According to my oncologist it is still so very tiny and my blood work is perfect. Even my tumor markers are down (but my tumor markers are always low). I said - tiny or not it nearly doubled in size and that bothers me. She knows me well and told me she reached out to one of her colleagues who she tells me is brilliant and and probably the smartest man I'll ever meet. He does a lot of work with clinical trials (MGH and Dana Farber) and he happens to be working on one for the gene mutation I have which is AKT1. He said he definitely wanted to see me and she wants me to meet with him. So I have an appointment with him this coming Friday. I've been trying to do some research on the AKT1 mutation but not a whole lot out there and not much in layman's terms. I don't know enough about it yet to give you guys any information. I'll keep researching and I'll update you after I meet with this new oncologist. Oh and she said he will talk to me about possibly having a liver biopsy. The spot is still so small that it may not be possible to biopsy it but she said he will talk about it with me.
Not sure how I feel about any of this right now. Gotta let it sink it a bit.
Thanks for listening.
Cathy
0 -
Cathy, that was a lot of encouraging news! As I read, I was wondering if it would be possible somehow to do a biopsy of that worrisome spot. I'm so glad that you're going to see this doctor. It sounds as though you'll continue to be in excellent hands. Good luck!! And keep us posted.
0 -
animalcrackers~ I feel like you're explaining exactly what I have been told,right down to the blood work and tumor in your liver. I also only had a less than a marble sized tumor in my liver that was not in any lobe, and I have never once had bad blood work. My tumor markers are also plummeting, but my surgical oncologist went in and took that small tumor out of my liver. I had a resection. I still have some spots in my bones, located in my pelvis and a few in my back. But that's it. They removed my breast and all of the nodes in my arm. I also had a liver biopsy and it was difficult for them to do it , but at least I knew it was the same cancer and not secondary cancer in my liver. Interventional radiology did the procedure and it was outpatient and twilight for me. The only thing that really sucked was I was not able to move after the procedure for four hours because the liver filters your blood and they don't want you bleeding. I had a ton of cancer removed from my body that day. I am still considered a person with advanced breast cancer because it did spread,but since then have been reclassified as stage 3a. Explore every avenue, because my onc specifically said people can live years with bone cancer, but having it spread in your liver poses risks that can get pretty serious if not contained. I wish you nothing but success with this possible chance to have that thing removed or even ablation. Keep us posted. Praying for all!~M~0
-
- Cathy there is a website mycancergenome.org that has all kinds of info and drawings about pathways and areas being investigated. Once on the site go to breast cancer then search for AKT1.
- PI3K inhibitor is in the pipeline and is a step needed to get to AKT1....
0 -
Cathy - very interested in what you learn and how you choose to proceed.
Best,
>KNC<
0 -
Openmind, welcome! As others have said this is a great place to hang out and you will gain so much knowledge and support from these amazing women.
I've had my 6 month PET scan and then just yesterday, blood work. All is good and my tumor markers are back into normal range. Today, I started round #17 so on we go. As other have sometimes said, you feel weird posting good news but I also know it gives hope to everyone here that we can all continue on these drugs for a long time and stay stable which is what I think I am right now. I'm still dealing with fatigue but most other side effects have subsided or at least I don't notice them as much.
I have asked about dropping to 100 mg of Ibrance but my MO is very reluctant to do that since my blood work is stable and my side effects not really awful any more. So, I guess "why mess with success "?
However, the letrozole seems to be making me gain weight, it must slow down our metabolism. I'm trying to exercise but it's hard to get my heart rate high enough to burn those calories. I keep telling myself that if I'm gaining weight, my cancer is dormant because losing weight was one of the first signs of my cancer. And I fantasize that the hot flashes are killing any cancer cells floating around. So, how's that for trying to look on the bright side. LOL!!
Keeping all of you in my daily prayers.
Faith (in the future)
0 -
Faith~ so awesome !!! 💐💐 I am so happy that you had great news. You deserve it. Way to kick that cancers butt! Big hug for you. Inspiration to me. I'm only on round six and scan next week. You give me hope bless you! ~M
0 -
I posted recently that I have not had to pay anything for my 4 months of Ibrance. I guess I spoke too soon. Yesterday the specialty rx called to say my $5000 grant has been depleted and there is not enough to pay my co pay for this month. They are checking for other funding and have not called back.
I am a widow and live on SS only, so I know my income qualifies me to receive these grants from foundations who help with co pays. My MO assured me I would not have to budget for Ibrance.
So I'm playing the waiting for Ibrance game. I'm on my off week and supposed to start tomorrow. I know from reading here that it won't be a big problem if I have to miss a few pills. But, if I have to start paying for it, that's a big problem.
0 -
Granna~ contact the social worker at your infusion clinic or hospital. They have knowledge of all grants and programs, they are excellent tools. Mine has been nothing but supportive and helpful. Also, try government assistance. You're considered disabled, so apply for medical assistance. It doesn't take that long and it's worth it in the long run. Relax,there are things out there to help. Keeping you close in prayer ~M
0 -
Granny, Your MO's office can also contact Pfizer directly to see if they will help. I have heard that they usually will as long as your income is under $100,000 per year, so you should qualify. Many specialty pharmacies work magic and won't give up until they find the assistance you need. Since people go in and out of programs frequently as they change treatment plans, some specialty pharmacies know that a "no" one day can turn into a "yes" the next day. Hang in there!
Faith, Great news on the scan! Woohoo! I wish I had an excuse for gaining weight. I thought I was the only person with stage IV bc who got heavier even after progression. I have to say that mine is from overeating and under exercising lately. I am a stress eater, so I ate when my DH was sick. Now he is better, so I need to stop.
Cathy, Overall, your scans were good. I hope you get more information on that darn tiny liver spot. How soon will you see the onc from the Mass General/Dana Farber trials?I am interested in hearing what he has to say and recommend.
Openmind, Keep us posted on your SIL's counts and progress.
Lynne
0 -
Granny, you can contact Pfizer directly and they will give you a coupon for a 10.00 copay for your In range. They did it for me when my insurance company refused to pay.
Do it online and toy should have coupon by tomorrow.
0 -
HOLY CRAP!!!!ok I'm still on page 200 reading and ur story Z made me jump for joy!!! I'm 40 pages back but I hope everything is good.
0 -
50sGirl - I see the oncologist with the clinical trials this coming Friday. I will surely keep you all posted.
0 -
How great to drop in and see that some of my favorite Dancers have been here! I love all the good news and hope everyone keeps taking time to post it.
Animalcrackers, we will not let a polka dot on the liver put a pall on your good news. Livers are notorious for creating weird spots that come and go. I suffered the ultimate indignity of having one turn out to be "fat" in 2012. My oncologist called it the "one-too-many-Whoppers" spot! I pray you share my malady.
Micmel, you win the prize here for getting reclassified! I've refused to let anyone give me any paper that states I'm a Stage 4. I wrote a little story once about tiny birds flying over a bunch of cancer survivors and plucking off the tiny tags that showed their stages. I'll find it and post it, then we can all give 'em up!
Granny, that happened to me with the foundation/specialty pharmacy. My oncologist's nurse had me bring our last tax return and she submitted it with a form to get Ibrance directly from Pfizer. They made that happen within a week. I was also told that the onc would get free samples for me from the local Pfizer rep if Ibrance didn't ship the pills in time. Don't you worry a minute about this, my friend. (I just had a thought that if 21 of us sent you one pill, you're be all set and we'd probably all be just fine too!)
Here's to good days ahead for all of us! God bless every one of you with peace and merely chubby livers!
0 -
Faith - I love those scans. Thanks for letting us know!
Grannax - This is solvable. Hang in there.
Cathy - thinking of you keep us posted.
DancingDiva - If you are talking about the nightmare PET scan report switcharoo in December, thanks for the support. It took a long time to get over. Just thinking about it makes me shake a bit. But it gave me a taste of what progression feels like. I suppose the good lord felt I needed to know.
>Z<
0 -
I didn't hear anything yesterday about funding for Ibrance. But, I'm not giving up. I've heard that specialty rx can work wonders. I may just get 2 off weeks this time. That wouldn't be too bad because I've got a trip planned for this weekend. I leave tomorrow to drive down to Temple to watch my grandson play T ball. Then on Saturday I will watch my granddaughter perform in a dinner theatre. I think they are singing songs from Wicked this year. I plan to have fun with family for a few days. I'll worry about Ibrance another day. Maybe by Monday it will be problem solved.
0 -
I had a thought: it seems that a lot of us are paying different prices under varying circumstances for Ibrance. There are posts scattered throughout related to varying costs. I wonder if it would make send to have a single document in which we could keep all the various payment plans of which we are aware and the circumstances surrounding those payments (i.e., Medicare, Medicare with supplement, prescription coverage required by Medicare..... I'm not certain of the proper name for the supplemental insurance), regular insurance, no insurance, Canada vs US, Pfizer coupon, etc.
If I did it (and I'm willing), it would have to be in a simple Word document, as I don't know how to use Excel. Someone more up to speed with another program might be better suited. Not sure how we'd post it, but I would think that this could be helpful. Thoughts?
0
