Ibrance (Palbociclib)
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oh my Divine!!! It sounds like you caught it at the beginning though. My mets were fairly extensive and the meds put a stop on it for now. On the price issue, my supplement paid it as drugs and not chemo. My onc gave me a pack to apply for copay assistance which paid up to 5000$ after insurance. Saved my life. You may also seek assistance from the drug maker. Hope it all works out. Hugs
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Hi - If you have non-gov employee insurance, you need to ask for a co-pay card when you talk to the speciality pharmacy prior to your 1st shipment. The only requirement is that you are not on a govt-paid insurance program. It takes the co-pay to zero. My first conversation with the insurance company started with the full price of the meds (which was like $13,000 per month) then reduced to the co-pay (which was like $2,500 per month) then they said BUT I can apply the co-pay card which takes that down to zero.) So I went from heart attack to palpitations and then to calm in the span of 5 minutes.
One note - My company changed insurance providers this year. The old one (Anthem) counted the co-pay card amount to my annual deductible (added benefit!) but the new one (United healthcare) does not. Frankly I think it's fair that they do not apply it, since it is not out of pocket for me but last year was nice because I hit my annual max by the end of Feb.
If you are on a Government insurance then others can help. Jaycee is the resident expert.
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And PS to Divine - so sorry to learn of your progression. It is actually really awesome that Arimidex has kept you in the clear since 2011 though - wow! Even still, I’m sure this feels like an awful gut-punch for you. We are here to walk you through the Ibrance “dance.” On the whole, it’s a pretty amazing drug.
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Thanks, Lauren & Jo. My insurance now is through my husband’s emplyer, which is non govenment and I believe its Anthem. His company is pushing volunteer early retirements and he feels pressed to take it, so some time bynthe end of this year or sooner, I will probably go on Medicare which I got when I applied for disability. But husband’s employer has been my main insurance to date. It sounds like I will need to look at some other kinds of options when the Medicare switch happens. But what a complicated process. I am glad, greatful for your information and hope that all works out in my favor when payment time comes
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Hi Divine, and welcome to our friendly group although I am sorry you have to be here. The others are correct that there is co-pay assistance out there. Google "Pfizer Oncology Together" and you should find the financial assistance you need. They cover all of my co-pay and you don't have to send any information to qualify. Hope this helps!
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Divine: I am on Ibrance which retails for about $10g per month. When I first got on Pfizer sent me my pills for free as part of a program they have. This year there was some grant money so my pills are coming out of the CVS Specialty Pharmacy. The paperwork for the two programs was handled seamlessly by my oncologist's office. He has a full time employee that handles nothing but this. I did need to provide my tax returns for both years and signed a form that she got for me. It only took about a week before I was approve. I am on medicare and have supplemental health insurance also. Good luck on your journey and don't stress. There is lots of help out there.
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Thanks for the additional info, IntotheLight & Wandering. If I may ask, Wandering, what supplemental medical plan did you go with. I’m assuming this is to supplement Medicare, and I’m doing my homework on that for when I get to that point.
My gosh, what a relief this forum is! I so appreciate all of your responses, it’s helping so much.
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How long after starting the Ibrance combo will I know if it is working? Is that only determined via scanning? At what point does the onc scan?
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Hi Divine. I am on Medicare. Under Pfizer Oncology Together, I printed out the applications for myself and my MO.
The MO completed her portion and faxed. I completed my application AND at the same time I wrote a letter requesting financial assistance with detailed expenses and proof of income. I also faxed this info. This will save time as you will be rejected if over poverty limit. Pfizer will want to know what your out of pocket expense /monthly average expense will be for Ibrance- will be based on your specific Medicare part D plan. I followed up to make sure all info was received and scanned into their system.
Pfizer support staff very nice and will guide you thru the process for any questions about the application.
P.S.
This thread is wonderful and informative.
It takes a few months to see a response, so don't get discouraged. For me (and we are all different), my MO looks at my labs, my Ca15.3, how I feel and results from my bone and CT scans. It took 9 months to get to NEAD or sign of regression with consistent Ca 15.3. I was stable with AC prior to starting. I am soon to start month 28 on Ibrance/Letrozole. I have never had PET scan.
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Divine, I USED to be the resident expert. Things have changed a lot since I started three years ago. My MO's person took care of the first month but then put it all on me. I have Medicare and a supplement and Medicare drug Part D. Medicare Part D covers a large portion of the Ibrance cost. When I first started, it was $10,000 a month. It is now $13,000. I can give you exact values because I keep track of everything. My co-pay last year was $580 a month. This year it is $634. I used to get grants from one of two foundations to cover the co-pay. One is PAN, the other is PAF. I can send you links if you need them. The problem with the foundations now is that they don't have any funds much. I just looked this morning and neither had money in their MBC funds. I do all this myself and the stress is very high. Since the co-pay is so high, the grants for $2400 to $5000 don't last very long. I got to the end of my rope with that process, high anxiety every few months, and applied to Pfizer for assistance. I applied to get the drug for free. They want lots of information for that. I was surprised that Chris said they didn't want anything. But she got co-pay assistance which maybe Pfizer gives more now since the foundations give less. All the assistance I have applied for has been income based. The Pfizer assistance has a stricter level. The foundations, almost anyone meets their requirements. I know this is a big mish-mash of information and I'm sorry. When you first asked, I was all ready to jump in and answer your questions. Then other people started posting information that has changed since I started. Keep asking and I will jump in when I have good info. You asked about supplements. My Medicare supplement is from Blue Cross Blue Shield. (Plan F because that's what my mom had.) My Medicare drug (Part D) is from Humana.
My MO (when I first started I/L) didn't scan for six months. After that, he scanned at seemingly random points. 4 months, 3 months, 5 months. It was weird but then I changed MO's (not because of that). My new one wants to scan every three months but I talk her into four. Mine uses Pet scans but some here have CT's and bone scans.
Also, I am confused about your insurance. You have Medicare but you don't use it? You use your husband's insurance instead? Do you use Medicare as secondary? I didn't know you could do that. You might be better off using Medicare as primary. Please feel free to PM me about any of this. I am retired and like to feel useful.
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Hi all,
Luce and I have been discussing whether or not taking Celebrex/NSAIDs would be a good idea for Ibrance users, and I'd be interested to know if anyone here takes Celebrex/Celecoxib, which is a COX-2 inhibitor.
My second oncologist, since retired, strongly encouraged me to take it, presumably she's seen some cases where she suspected it was helping.
Here is a report saying that Celebrex inhibits IDO1, and helps tumors with IDO1 expression to become more responsive to immunotherapy:
https://www.oncologynurseadvisor.com/home/cancer-t...
And here is a paper that says about 75% HR-positive breast cancers express IDO1, and that blocking IDO1 could help our immune system infiltrate these tumors:
https://jitc.biomedcentral.com/articles/10.1186/s4...
Keytruda and Opodivo are having trials combining immunotherapy with EP4, a next-gen inhibitor that blocks the COX-2 pathway, and it will be interesting to see if ER-positive breast cancers are responsive, even without high PDL1 expression.
But can Celebrex also help our normal immune system get at the mets, even without immunotherapy? Or, one can also make a case on paper that Ibrance prefers a pro-inflammatory environment, so its an open question for now..
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Thank you, Sandi and Jaycee. Yes, I am on my husband's insurance. Medicare is secondary. I do not have part B. But the company where my husband works is offering volunteer early retirements and he is going to accept it. If he doesn't take it, there is no guarantee he will have a job with the company as it is in a restructuring phase. Then we would miss out on the severance pay if he would suddenly be out of work. At this point, we don't know his last day there, it could be anywhere from April to December. Part of his severance is continued health care for four months. Then we will have to pick up our own. At that point I will go on Medicare. I hope my explanation makes sense.
I hear you about the stress. Not only do we women need money to survive, we need strong multi tasking skills and a certain level of intelligence to juggle dealing with all the various aspects of health care!
So with my husband's good-paying, steady job of the last 13 years coming to an end this year and me getting the news of progression, our world is rather up in the air. It really never stops, all the uncertainty.
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Cure-ious, there is an issue for some us, me included, who have GI problems that preclude the use of NSAIDS. That would include Celebrex, I assume?
Divine, can your husband retire and go on SS and Medicare? I've been retired/on disability since 2004. I got Medicare in 2006 (two year wait to get it after SSDI). Ten years later, DH retired and went on SS and Medicare. There is an unexpected and good/bad side effect of this process. Your income PLUMMETS but you become eligible for all kinds of assistance. We did not qualify for anything before DH retired. Now, we do.
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Divine, let me clarify my situation. Since I don't use Medicare yet (I am still on my husband's insurance) I use the commercial, private, employer, or state health insurance marketplace coverage link on the Pfizer Oncology Together site and it goes to https://www.pfizeroncologytogether.com/patient/financial-assistance#commercially-insured page. Click on the Ibrance box and it goes to a page that asks for personal information. After that it took me to the co-pay savings card area and said I was approved. I do not know the routine for medicare insurance yet, but will this summer once my husband retires. Right now I mail in a copy of my card that is on the page that pops up since my pharmacy won't take it, (you can read this in the instructions) and include the pharmacy receipt, and they mail me a check. I have Kaiser private insurance so this is what I need to do. I know everyone is sending different information because we are all in different situations so you will have to sift through, but it works this way for me.
Also, your MO usually works within his/her medical facility and insurance guidelines. My MO monitors my blood each month and I get a PET scan every 6 months (3 months at first.) Some use bone scans, others use other types, but that varies depending on the MO and the insurance. You will find a routine that works for you so keep asking. We care and don't want to overburden you, but want to help.
Chris
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Even worse on Celebrex- there is a heart issue! The new EP4 inhibitor gets around that, it blocks further down in the pathway with fewer side effects. I think that is something everyone (ER-positive, Triple-negative, etc) wants to be taking when they do get immunotherapy of some kind.
To add to my point above, it is clear from SABCS2017 that adding Celebrex does NOT help fight breast cancer in the neoadjuvant setting, with or without chemo/radiation
although those trials did not include Ibrance or immunotherapy. They did see some benefits, including helping with arthritic pain
We'll see the results from the trial testing the EP4 inhibitor in combination with immunotherapy, which is well worth following, because high COX-2 activity is associated with progression for MBC
PS On further reading, when they did subgroup analysis, they saw that there was a PFS benefit for 600 patients taking Celebrex; but it was restricted to those who were not taking chemo. The thought was that chemo already suppresses inflammation, so that would be redundant to Celebrex. Also, on good news, they say no heart risk problems in cancer patients taking it..
https://www.medscape.com/viewarticle/890272#vp_3
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Cure-ous....I know you are relating Celebrex to Ibrance and immunotherapy. I am having the worst pain. At first thought it was in my hip but now pretty sure it's the back. Went to see the ortho dr and he has given me a prescription for Meloxicam and ordered an MRI. The pain is excruciating but the Meloxicam is helping some. I wonder if I should switch to Celebrex? He didn't suggest it and both are warnings with the heart. Bought a brace for the back and helps some but when the med wears off the pain starts again. We had a 7 Hr car ride coming back from vac two weeks ago and that's when it started. Never had back problems before. Mets have been in the upper part of back near neck. Last two pet/ct tumors in that area are clear and show no new ones. Just thought I would run this by you. Thanks0
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Oh my word, lots of new posts and I can’t keep track. Jaylea...in your team.
Lots of you having issues with financing treatment. Absolutely appalling - we have the NHS. But I also have spent many an hour fighting with private medical insurance which we had through my DH’s work and havemaintained since my first Dx in 2007. Currently in NHS, but will drop into private if additional meds are funded, or if I need a hospital stay.
Just to add to the mix... having issues with pins and needles in left arm / hand. Assume it’s the Ibrance and mild neuropathy. Any advice gratefully accepted!
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DivineMrsM, welcome to our little Ibrance Dance Club! Expect the MBC to start leaving after you take the first orange capsule....all this dancing makes it crazy! I had a scan at 3 months and the change in my widespread bone mets was remarkable. I'm coming up on two and a half years on Ibrance/Arimidex/XGeva and a full seven years since the first mets.
Twenty-five years ago when I was diagnosed the general assumption was that people with MBC had very limited lives. I have friends who have lived decades post-treatment and others who have been in and out of treatment for many years.
You will find so many good stories here. Maybe every one of them is not an Ibrance success story but they are all stories of great courage that you can tuck away for your own journey. Be on the lookout for funny moments along the way and be sure to share them with us.
About the $ for Ibrance: I have never paid a single dollar for the medicine. I turned 65 and retired in 2014 and went on Medicare with Mutual of Omaha as a supplement (Part
and United Health Care (Part D). Neither of these are the cheapest supplements but I have not been charged for anything, which is not bad considering my health care costs about $20,000 a month! I have bounced from two of the co-pay foundations to getting Ibrance free from Pfizer. I would be surprised if your oncology practice doesn't have someone assigned to apply for all of this for you. If they don't, you can pull all the applications from the Internet. Apply to everyone. They are all in touch with each other and if they are out of funds will send you on to someone else. The foundations may run out of money and get replenished pretty quickly. Don't give up! And you don't have to be poor to qualify. Ask your oncologist to get samples from his drug rep so you can go ahead and get started.
I'll be here praying for you as I do for all our other Dancers. I pray in the bathtub so you're coming up in about an hour!
Love from PatGMc
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Karenfizedbo15, I would think the thing in your hand is from the estrogen therapy. I've found Turmeric is excellent to help you avoid that. MegaFood brand from Amazon.
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Airlinegal,
I was reading that aspirin and some NSAIDs inhibit COX-1, which is associated with the increased risks of GI problems, etc, whereas the arthritis pain comes from the COX-2.
Both Meloxicam and Celebrex are NSAIDs with some selectivity for COX-2 and mostly used for arthritis pain and inflammation. Apparently Celebrex is different from Meloxicam and other NSAIDs in that it causes less inflammation and ulceration of the stomach and intestine. The heart risk reported with using Celebrex was also seen with other NSAIDs but it was rare, and the 2017 SBCS report tested a lot of MBC patients and said they really saw no heart risks using Celebrex. I would guess its acting the same as Celebrex in terms of immunotherapy, but maybe its a newer drug because I didn't see any reports addressing the question one way or the other. It inhibits COX-2, should have the same immune effects as Celebrex..
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Patmg, Your many stories of survivors calm me down every day, thanks!!!
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in full agreement with Cure-ious. PatgMc please don’t stop posting about all these survivors!!! I need to hear this everyday!!!
Love so much
Brenda
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Quick question..Do any of your Oncologists insist you have Bl counts done prior to certain dental procedures. I had one done prior to my two temporary crowns..That involved lots of drilling etc..What about just having permanent ones put in..Forgot the name of our resident dental assistant here..who worked for 31 yrs.and answered my last dental question darn chemo brain and too tired or lazy to look up your name or google my question.tonite.a simple HELP!!!😁As I have appt for Monday..
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hi lakewoman! Yes I had to have my MO give permission to my dentist for a simple cleaning and check up.
I had a wisdom tooth pulled and needed to take a break from my meds (esp the Xgeva) in order to do so.
Your dentist shouldn't do the work unless they have the okay from your MO as far as I understand. Sounds like you have a long term relationship with them, however dentists aren't oncologists so perhaps best to double check on this with your MO.
The main reason is that when dental work is done, and we have lowered white blood cell counts, a lot of “stuff" like bacteria and other microorganisms get stirred up, and could be potentially harmful to us. Also, for those of us on bisphospinates, we may need to take a break before doing work on teeth and the jaw - with regards to dangers of ONJ
Oh and I believe you’re talking about Gumdoctor
Hope this helps! Good luck!!
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Hi Lakewoman...
Cementing permanent crowns is not considered "invasive" like taking a tooth out. Logically, blood counts should not be required.
But as Love from Philly pointed out, dentists are are not oncologists.
It is prudent for you to ask your onocologist for guidance.
Gumdoctor
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Thanks for that info, lovefromphilly. I’m also going to be on Xgeva, so I knew about permissions from that angle but hadn’t come across it for the Ibrance yet. That makes sense!
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Patgmc, I got a kick out of your comment that your prayers for me were coming up in an hour when you are getting a bath. Thanks for the spiritual support! It’s so reassuring to read that you’re having a good response to this treatment, too. Like Cure-ious says, your stories calm me down.
Jaycee, since dh is not yet 62, what he hopes to do is find employment elsewhere after his current job comes to an end. We have no way of knowing how that will all unfold. He is an active type and stays busy and isnt ready to retire and be done working. Ideally, he’d like to find a good paying job with benefits until age 65 and then collect SS and go on Medicare. Will have to see what opens up.
IntoLight, thanks for explaining your medical care and how your onc goes about scanning.
So appreciative of this thread!!!
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TY to lovefromphi and gumdoctor big help! Much appreciated. My MO did do a list for my dentist I have a copy.Crowns and cleaning on them.as well as few other things.As long as putting new ones is not invasive it's a go for me.I had the crown done without asking MO cause I had just had bl work done two days prior....See MO for monthly check up Tues.Prayers for all.
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Thanks Patmg... will investigate the possibility of turmeric helping p&n in arm/hand and ask MO / BC nurse when I see them this week about it being caused by the Letrozole....or what their thoughts are. Likely to be shrug tho!
Ladies with the dental thing...feel your pain and hope you get the best possible treatment. I go every 3 months for checks, which is fine although the day a locum was in and told me that if I had any infection whilst on chemo, ALL my teeth would need to come out was a bit of a shocker. 😱 That was 11 years ago tho and she was from Poland, where they do things differently clearly. My normal dentist, who’s fab, was on Mat leave at the time. When she returned she said they called the locum the Pus Police as she’d terrified lots of patients...No teeth taken out either I’m glad to say
I learned to make sure they know exactly what my treatment regime is and how I am doing on it. Usually they are pretty grateful that we have knowledge of our situation.
Wish me luck for bloods which are high enough to do next cycle...and not YET another delay. On the other hand the delay is helping me recover...swings and roundabouts I suppose! 🙄
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Karen, I can totally predict that your doctor will say the hand/arm thing is not caused by letrozole. After the AIs came on the market we had women complain at our support center about a whole variety of health issues. Doctors always poo-pooed these and said it was anxiety or arthritis or whatever!
One oncologist told me he might stop prescribing them because most of his patients were not compliant. Some women were sent letters saying their doctors would not be responsible for their recurrences if they refused to stay on an AI! These were all people taking the drugs prophylactically (sp?).
The first time I took letrozole I was very close to losing the use of my right hand. I'm an artist so that was huge for me! The second time was after I finished chemo for the first mets. After months on the letrozole I had such a problem with the ligaments in my left leg that I began falling. When I got up from being seated or from bed I'd have to go slowly and stumble around until I walked off the stiffness. (I might add that I knew many people who had none of these problems even after 5 years.)
EDIT: Within 6 weeks of stopping the letrozole my side effects disappeared. This was also the experience of my friends.
I was quite concerned when I started the Arimidex but so delighted when the Turmeric helped me avoid a repeat of that experience.
I'm pulling for your blood cells to have recovered nicely! I'm thankful to have never run into a "locum", though I have met a negative-nelly or two on my long cancer journey!
Love from PatGMc
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