Ibrance (Palbociclib)
Comments
-
Hi Barb - Pfizer has a $10 co-pay for Ibrance - here is the link. https://www.pfizercopayone.com/ibrance-card My insurance covers the whole cost, which is very expensive along with fas shots. Please ask them about this program to save money. Momall - I do not have a port for my pleural effusions, I just go to UCLA once a month for the draining, which is a tube underneath one of my back ribs. The whole drain takes about 45 minutes. Not much pain either - lidocaine shot hurts the most. My Dr is wonderful! I would ask about a procedure called pleurodesis where they inject talc to stop infusions permanently. Steph had one of these. I'm not a candidate yet, but your aunt may be. Rosevalley - I am crushed that Ibrance is not working for you. What strength are you on? Can you take a lower dose? Must get you through summer for your son. You are such a loving mom.
)0 -
Barb,
Pfizer has two programs to help patients who can't afford the outrageous amount they charge. One involves a copay of $10 and the other is free. As someone on Medicare, you can't qualify for the $10 copay program. You will probably have to apply for the need based program. You need to make under a certain amount per year-I don't know what it is for a widow-sorry!!! But, if you call them they will tell you. They do not ask for any verification of what you earn.
Hope this helps
Babs
0 -
Mom -I was told no more mammos needed as I'm getting Pet/ct regularly. I don't think it would change treatment anyway since we receive systemic treatment for mets.
0 -
Moissy, Z, and LovesMaltese, thank you all for your kind thoughts and suggestions. It means a lot to me! And yes, LovesMaltese, Gabapentin does help!
Still trying to figure out what has caused this awful foot neuropathy. My MRI revealed disk disease (no cancer) in upper and lower spine. Maybe Ibrance isn't the culprit after all? Or maybe it's a combo! I see a neurologist next week.
Rosevalley, so sorry to read that Ibrance is causing you more troubles. I hope you find some relief.
Mom, no more mammos for me. My onc. would like to follow up when something shows up on CT scan, but I still refuse. I have nerve damage and it's justtoo painful. Plus, at stage iv, it's the least of our problems.
0 -
Barb
If your state is like mine (Kansas) Ibrance is considered a prescription, not a treatment. So, it falls to your prescription coverage. There is a group called Patient Assistance Network that may help you. My pharmacy (KU Med) made the connection for me. It was very simple. Ask someone at your one office.
Also, some on this board have worked directly with Pfizer for help.
Good luck! I'm sure you will find some assistance
0 -
Moissy yeah it makes sense. And so far she has been having Pet/CT about 3mos or less. Thanks a lot.
Rosevalley argh, so sorry, ascites are very uncomfortable. I just wonder if Ibrance would need more time to work. Interesting that my daughter used to be Her2- and then biopsy after much progression showed status changed to Her2+ , so after trying many tx for Her2+ and not getting good results at all, this doc put her on this combo Letrozole/Ibrance (which Pfizer said many docs are doing off label), and also Hercepting and something else in her case due to results containing certain mutations. Did your MO also tell you that Ibrance was not (at least at first) prescribed for Her2+? So I learned that Her2 has many different Pathways and one of these drugs GOTTA hit it. Hope you feel better soon.
Lalady thanks, I could ask the doc. She is aware of all that is going on, she is in the early stages of Alzheimer's, she is taking meds for that, but she has conversations, of course she is not in perfect health, but she does get moved about with help. So, her feeding tube is bcs she was negating food. So they are draining the fluids in the Hospital and bcs this is the 3rd time in maybe a yr, that she has to go in for that, he was thinking in leaving a drain in, I was just afraid that it's one more infection we have to worry about. She has no children and we were always very close, so we take care of her now. But we do have great Aides that come in and help. thank you.
Lalady or Babs I am sorry I don't recall but you recommended the book When breath becomes air, I was crying like a baby!! Straight to the heart. I just finished a book by Mary Elizabeth Williams, A series of catastrophes and miracles. Fantastic!! You guys will love it. (these are the only type of books that i could read these days)
Hope you get what you need Barb. Hugs.
0 -
Momall - I recommended our board read Dr. Paul Kalanithi's autobiography "When Breath Becomes Air" - very moving.
For your auntie, a permanent solution like a pleurodesis might help - ask Dr's about that possibility. Worried a port may cause infection. Much love to you and Dani. Kaption - my KS friend, hoping new meds help. You are a gem and deserve a break. Babs - thanks for clarifying how Pfizer helps those ladies on medicare - my group health insurance covers both ibrance and fas, thus far I'm still working. Started round #6 last week. Rosevalley - hoping you can stay on Ibrance a little longer to get some relief.Claire
0 -
Barb, I feel fairly sure that you will qualify for some assistance from the PAN foundation. "Patient Access Network". It is a charitable foundation. Like you,I was worried to death when I heard the cost of the Ibrance. We are also on Medicare which is one of the criteria for assistance. I received a phone call asking for the amount of both my DH and my Social Security and also the amounts we receive from any IRA's we have. That total needed to be under a certain percent (it was something like 400% ?) of the federal poverty line. I was shocked we qualified as we had two incomes but I did, so I would think you would too. The drug company took care of all of it. I have Silverscript Insurance here in Illinois. Hope you sleep well tonight, I know what a worry this is for you.
Faith0 -
MomAllTheTime -
Metformin is the subject of many clinical trials at MD Anderson right now. It is being tested with chemotherapy to see if it improves outcomes. It seems to.
It was noted in epidemiological studies that people with cancer who were also being treated for diabetes often had better outcomes. Then with the same epidemiological approach, they figured out it was the people on Metformin who were doing better. MD Anderson has a huge database of patients where they can do this kind of analysis.
They don't know the mechanism of action. However, metformin keeps your blood sugar low which keeps insulin levels low. From what I understand about insulin and cancer, that has to be a good thing. So that is my theory.
In any case, the integrative medical doctor on my team prescribes metformin for his cancer patients. He's convinced by the epidemiological trials so he's not waiting for the outcome of the clinical trials.
I suspect the Metformin contributes to the fact that I feel fatigued. The low blood sugar is hard. Not to be toyed with, but I want to do a full court press on this cancer for at least 6-12 months.
This is one article that talks about how many clinical trials dont see a difference in outcome in patients who are stable vs ned. I read elsewhere that tumor cells can die and form a bunch of fibrous scar tissue rather than go away. Still looking for the reference. I will post it when I stumble upon it.
0 -
Hi Momallthetime,
Wow!
I'm glad I've looked in on this thread and read what's up with your aunt.
As Lalady wrote, I've had pleural mets, pleural effusion, thoracentesis draining and a VATs pleuradesis procedure to seal the lung linings together with talc and stop future pleural effusion. That was in early 2012.
In August 2015 after many months of ascites (fluid in the abdomen), I had an Aspira indwelling drain installed to remove ascites fluid. I've drained an average of 1 liter daily since.
So, I'm thinking, if I were 80 years old, immobile, with a feeding tube and dementia, there's no way I'd undergo either a VATs pleuradesis procedure or an implanted drain for pleural effusion.
While the former is a good option for fit, relatively healthy folks with controlled cancer, it's a hard, hard surgery. It's not only invasive, the body really doesn't like that level of interference. Basically it's applying talc (cement) to the lung lining to stop future fluid accumulation.
The thoracentesis procedure comes with substantial risk of infection and complication and is only a stop-gap measure for recurrent pleural effusion. An indwelling drain is nominally better, but comes with its own risks. My daily draining has greatly reduced me - weight, dehydration, anemia, protein and electrolyte loss, lowering blood pressure and increased heart rate, edema, circulatory problems, extreme thirst, nausea, light headedness.
I don't know your aunt or her situation, but she seems to be more frail than I am. I can still move, eat, think, communicate and participate in life. And this drain plus advancing cancer is kicking my very tough 60-year-old a**.
Did you talk with your aunt about her wishes for medical interventions earlier while she could express them? Does her doctor/geriatrician understand? How much medical interference would she want? Can you have someone please look at the whole of her situation, not just suggest spot welds for recurrent problems?
This indwelling drain thing is helpful when we're strong enough to take it. And while we're waiting for more good treatment effects. I'm not-so-sure it's a good option for everyone near the end-of-life. That's a conversation worth having with her doctors, I think.
Oh yes, I assume you're her designated agent for medical care in her advance directives? That she asked you to make these types of decisions on her behalf?
Sorry to be so blunt.
LaLady, I stillthink a VATS pleuradesis would be a better alternative for you than an indwelling drain, given your effective cancer treatment, work life and globe-trotting ways.
Loving concern, Stephanie
0 -
Barb, I just went through the exact same worry and research to get Ibrance for my Mom 2 weeks ago. I was lucky when I was on Ibrance - mine was fully covered by my insurance. But my mom had the same situation and copay as you, and she was stressed from hearing that. Please don't worry. As others have said, Pfizer will help but I found that going that route will take at least 2 weeks longer than letting your specialty pharmacy handle it through Patient Access Network. They approved her immediately and my Mom had the Ibrance overnighted and began taking it much sooner through them. But, either way, you will have it for free. Hopefully you will hear from your specialty pharmacy today so you can relax.
Rosevalley, I am so sorry to hear that you are dealing with those horrible stomach issues again. I am hoping that maybe the Ibrance just hasn't had long enough to kick in? I know you are seeing your MO today. Please update us. Thinking of you and praying you begin to feel better soon.
0 -
Oh my gosh, you guys are just awesome. I am trying to catch up to everyone. I am on different threads, and i like ot read everything, so I am sooooo behind.
Thank you. Thank you first of all.
Re: auntie. Yes, I speak for her. She knows I will do what's best for her. Believe me she wants to live, she endured a lot through her life, having the nurses aides has made our life so much easier, they get her dressed every day, and she is still interested in the mundane. So...anyway, doc called in a Rheumatologist, bcs they can figure out why this fluid keeps buildg up, and he comes up with Lupus!!! Bcs a blood test showed positive. Ridiculous. She never had any of the symptoms. Argh... But her primary his very caring, so he will work it out. I guess no draing tube this time i'll tell them.
Z thanks for the info. My DH takes Metformin, he was always slim, great diet, but A1C is getting higher, so cardiologist put him on it. My concern w Metformin, ( I think it's a great drug), is that Dani is already rail thin, if she would ever be put on it, what kind of effect would it have on her losing weight? I think it helps my hubby stay at the same weight. Could it be Metformin is a thought, bcs of the sugar issue and cancer? So keepg the sugar in check (even in nondiabeticals), would help keep cancer away??
And to all of you, think about the book from Mary E Williams, she is a terrific writer and her experience with Immunotherapy I thought very interesting. Onco is interested in Immunotherapy for Dani, when and if these txs she is on now will not do the job. He already started the process of putting it through the Insurance, I think.
0 -
Hi Longterm/Steph - nice to hear from you here - you are always inspiring despite your many procedures. gentle hug () My IR doc said "not yet" to any pleuradosis, so I get drained once a month. I have managed 2 business trips since starting this regime, but hoping for more energy on the #100 starting this month. My July vacation plans to Spain/Portugal keep me smiling. I am planning bucket trips within the 24 mo Ibrance projected window, as I know travel will likely become more complicated later on. Momall - hope the good advice for your auntie helps. It's never easy. Rooting for you and Dani. Let us know if Metformim helps her. My kitty turned 17 on Sunday! Maybe that is where Bloomie's charges came from. lol
0 -
Well I woke up to nausea and vomiting.. again. I managed to keep the Ibrance down last night. I went to the oncologist and my labs were perfect. Best they have been in months. Wish I felt good. I feel lousy. I managed to eat lunch (soup bread) and a boost. They took tumor markers and those won't be back for a couple of days. The fluid I draw off is increasing and the N/V makes me feel the Faslodex has worn off and the gut constriction increases. So I got my shots of Faslodex today and will continue the Ibrance 125mg. I am hopeful that this will see me through the summer. I just don't know yet if the Ibrance is working. Faslodex works but it wears off. sigh..
Thanks for your well wishes. I hope each of you has a good day. (((Hugs)))
0 -
(((Hugs))) for you Rosevalley.
0 -
Rosevalley - I'm sorry you are not feeling any improvement yet. Wishing you rest and comfort until Ibrance can kick in and have a chance to work.
0 -
I just want to say thank you to all you strong knowledgeable women here and tell you how much I admire you and I pray for all of us on this journey. I don't post often but I always read this site and it has been so helpful and given me much hope. I sometimes feel like I don't belong here because my cancer is not as advanced as most of yours and the doctor tells me I can live a long time with this thing. But, I get very anxious sometimes just thinking about what's ahead and you give me hope that my life will still be good for a long time. I've been so lucky to have about 25 cancer free years before this thing came back and I have a hard time still believing it's actually happened again. I guess it's called denial, but reality is settling in fast and you all give me hope. So a great big thank you to all of you smart, brave women. Please keep sharing for those of us who need your help.0
-
Faith - Hello there. Sorry for what you are going through. I am so glad you have an oncologist with a positive outlook supporting you. We'll all be interested in your experience on Ibrance. IMO it is an experimental drug since it was fast tracked and the vast majority of people on it have taken it only a short time.
In addition, they are already using it off label. Your experience as HER2+ will be very valuable.
>Z<
0 -
Faith I hope Ibrance works for you being Her2+.
I have always tested Her2- in the bone biopsy (2012) and initial tumor biopsy in the breast (2007) were both Her2 negative. Then when I developed malignant ascites they tested the fluid and it was Her2+ (2015). So my new oncologist gave me herceptin and there was no effect. My markers doubled, pain, gut involvement and ascites all worsened, so she was unconvinced that I flipped from Her2- to Her2+. It would be my luck to have 2 different kinds of cancer, a gut one and a bone one. I haven't been on the Ibrance long enough to know what it's doing against my cancer. If I stayed the same as she thinks ER 99% PR90% and Her2- then Ibrance should work. Fingers crossed.
Does anyone experience a worsening of neuropathy in the feet with Ibrance? It seems to make my feet act up. It wears off but I notice it. I forgot to mention it to my oncologist today. I did mention the hair thinning and falling out. She thinks that's the faslodex. Oh well we muddle through. On a happy note the local soccer team won a home game! My DH was very thrilled.
Everyone take care.
0 -
Hi Rose! I think you are still on your first cycle? Maybe two weeks in? The majority of symptoms I had the first round went away in subsequent rounds. I listed 15 symptoms the first round and only had 5 the second. Now I just have a couple and only one is definitely Ibrance (fatigue). Most of my SEs now are from arimidex
I freaked out about the copays in the beginning initially too. However everything has been covered thru the patient access network.
Good luck everyone!
0 -
Faith, I live in denial most of the time too, and plan to do so for the next 30 years.
I posted on the fas/ibrance thread but it doesn't seem very active for a few days. Wondering if any of you take astragalus to bring your blood counts up. I want to take it but I don't want to interfere with this med working. If so do you take it every day or just the 7 days off? Thanks, Heidi
0 -
Zar, rose and Hlb, thanks for your encouragement. I hope I can be of some help to others too. I'm in the middle of my 5th cycle and fatigue is still an issue but not quite as bad. My hair seems to be thinning more, I sure hope it stops. Losing my hair the first time was one of the worse parts of chemo. Everyday seems to be a new adventure. I had terrible joint pain in my my left thumb for several days but it's better now. My feet have always been a problem with plantar fasciitis, so, I don't know if it's worse now or not. I'm trying now to figure out the best time of day to take the letrazole because of the shortness of breath issues and slight dizziness. I've been taking it with the Ibrance in the morning but the nurse told me I could take it anytime of day. I tried it after lunch and felt a little dizzy, so last night I took it after dinner. That seemed ok but I didn't sleep well, but that happens sometimes anyway. So it's all trail and error.
I know this is a new drug and we are lucky to have it, but it sure would be nice if there were more long time survivors stories about it. When I look at some of the stats and see average of 21 months to progression, does that mean there are also others who have been on it a lot longer with no progression? Can we then go off the Ibrance and just continue with an AI? Is there anyone here on the boards that was in the trail and has that experience? Sure would love to hear from them.
Well, hope everyone has a pain free good day today. I'm off to get my hair clipped and dipped😉. Aka, cut and colored. The color always makes it look fuller.
0 -
HLB, I've always taken a lot of supplements in general, but I was told not to take anything specifically aimed at increasing counts while on Ibrance. The rationale was that low counts are part of the complex way Ibrance works, and doing anything to change that might be counterproductive -- that it's best to ride them out because most of the time they do rebound within a reasonable time, and patients rarely get sick even with low counts. That said, thankfully, I have never had a serious problem w/my counts, and if you or someone else does, your onc may approach it differently. I've been on Ibrance (125) since 08/2015, and normally wait an extra 5 or so days after Day 28 for my counts to rebound. I actually did get sick just once -- after a few days in Las Vegas -- and just had to wait a bit longer (16 days total) to restart, by which time my counts had rebounded extremely high.
Faith, my UCLA was involved in the trials, and my onc has patients who have been on Ibrance now for 5 and 6 years. There is also at least one gal in the CDK4/6 Inhibitor group on FB that has been in the trials 2+ years and is doing great. And remember, 21 mos. was the median, which means some have been on it considerably longer.
Rose, I'm like Zills -- SEs have gotten so much better over time. But I've also learned to avoid certain foods, wash my hair less frequently (and with a shampoo that contains Biotin), and other things to compensate for the SEs. Thankfully, I haven't had neuropathy with Ibrance, but I did with Taxotere in the past, and I found a good natural B-Complex helped a lot. Here's an article about it. http://www.drweil.com/drw/u/ART02717/Neuropathy.ht...
0 -
Hi Momallthetime and LALady,
Mom, glad the doctors are still trying to find and treat the cause of your aunt's pleural effusion, instead of just going after the symptom with risky and invasive procedures. Fingers crossed they can get it figured out and resolved to keep her at an acceptable quality of life for her. We all want such different things for ourselves.
Just the other day, a close friend told me if she were in my situation, she would have checked out a long time ago.
It's funny how we can still love life itself, even while living in circumstances others would find unbearable.
For me, extreme medical measures have become unbearable, but I've had decades of being a patient and over 40 surgical procedures, so I've hit my lifetime limit.
LALady, keep eking out a quality day at a time. I'm enthusiastic about your upcoming trip and all you do to engage life. What use is getting to the finish line and finding out all you've done is kept yourself safe?
My friend who used to be a scaredy cat said his perfect gravestone would have read, "safe at last". Fortunately, he's stepped up and out into his own life and offers himself generously to the world.
You do too.
Keep it up, you inspire many, including me.
much love & light for all here, Stephanie
0 -
thanks for the info Deanna. I've taken 8 pills so far and I'm getting more tired every day. I wish I knew the mechanism by which the astragalus brings up the counts, but it's all very complicated. I will skip it for now.
0 -
Rose and Stephanie - You are amazing inspirational women. Thank you. Praying for pain free and peaceful days for you both.
Deanna - My doc is allowing B12, Selenium and Zinc supplements. I asked if I could take them because it looked like they could help with low RBC, WBC and Neutrophil counts as well as deteriorating vision and energy levels. My mid cycle labs were still low, but much better than they had been previous months. I'm in the last week of the cycle and not needing naps which is nice. It may mean I can stay on the 100 mg dose.
Now I'm concerned that these supplements might reduce the value of the Ibrance....Let me know if you have a reference document I could see.
It's always something, eh!
Thanks!
0 -
Kathryn, I don't think the supplements you mentioned are a concern. I think it's more things like iron, for example -- because the type of anemia we get from our disease and tx isn't due to iron deficiency anemia -- as well as things specifically aimed at building wbcs. In the past, others have posted long lists of stuff they take specifically to counteract lower counts from Ibrance. I think it's that kind of regimen that's discouraged.
As far as references, way back in the original trials data, I believe there was some reference to counts and supplements. I'll have to search for it later. In the meantime, here's a rather extensive list of drugs and other substances that should not be mixed with Ibrance due to potential interactions, including grapefruit, St. John's Wort, and quinine. http://reference.medscape.com/drug/ibrance-palboci...
0 -
Thanks Deanna!
0 -
Kathryn, I got lowered to the 75mg- I made it through one month on the 100mg and the next month only to the two week mark. She had me stop for a week and then I started on the 75mg... at first she was going to keep me on the 100- but thought I wouldn't be able to finish a complete cycle. It makes me nervous that I am already on 75 and finishing cycle 8 now- Since I have started I have lost 2.5 weeks on it with extra time off. I had blood work at half way mark and numbers looked good for a change. I just hope it is still going to work.
0 -
ziz, I had to go off of Letrozole and Ibrance for 3 months because of liver enzyme issues and my scans still improved. Sorry to hear of progression for you, that bites. Thanks momallthetime, I am about ready to start at a lower dose of ibrance along with the Faslodex I have been on for 5 months. I am starting to get scanxiety as I get scans in two weeks and have just been feeling some occasional new stabs of pain, so sense that something is going on.... Hope it's just healing pains. Rosevalley, I am so sorry this tx is not working for you and you feel like crud...I hope they come up with a magical combo for you tomorrow. I can tell when the Faslodex is wearing off too...Barb, the cost of Ibrance almost always gets taken care of by some grant or insurance. I don't think I've heard of many who could not get it due to cost. Good luck! Sorry you had to move on Kaption, Let us know how the new tx goes too.
0
