Ibrance (Palbociclib)
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PNW: I'll send you a private message.
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So, I'm kinda prepping for my scans this week and next. First by reading all my previous reports to remind myself where I am now. Anybody else do this? I think i'm most intrigued on that lung nodule omitted on the July 2020 scan but reported on the Feb 2020 scan. Feb 2020 it was .67cm in right lower lung. Was left off the July report because anything under 5mm isn't reported according to MO but there was irritation noted in the right lower lung air sacs where the nodule is. I noted 2 different people did those reports. My usual person did the Feb 2020 report, someone else did the July 2020 scan and I am wondering if its possible measuring of the imaging might of been off and/or different because someone different did each report, and that maybe it should of been noted in July. MO did say she thought it was resurface on a future scan, so I'm curious to see if its noted again and/or gotten any bigger. I refuse to update my info until I see it pop up again. Stable. Stable. Stable. Hoping for Stable, even if that bugger pops up again that its still unchanged.
Secondly, this might be TMI but does anyone else prep for scans by making sure the cabuse and all have left the station as it were bowel wise or as much as possible? I always get concerned i might have to do a scan again because I'm not empty enough and I'm basically too full of poo to see everything. Thankfully Ibrance makes prune juice a staple in the refrigerator so I've been drinking prune juice, eating pears, and drinking strong coffee. Its like going from frosty rocks to unleashing the hoover dam, lemme tell you. Chasing my poor beloved out bathroom "I gotta go again!!!" and my husband teased me a bit and said "After 18 years you finally admit you poop now". lol.
12th is the bone scan, 18th is the CT. Deep breaths, I can do this.
PS: They make me drink that barium blech for the CT's. I mix up the flavors. Berry and Banana. But take it for me, don't go for the orange creamsicle.
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Rabbit, I wish you best of luck for good results stable nead cure. I also review past reports, it helps me to keep track and understand any changes. Agree with you, different radiologists report differently, I just gave up on following up on them!!! I like your comment “Thankfully Ibrance makes prune juice a staple in the refrigerator“
))) I recently noticed in my blood test, sodium became lower than normal and mcv and mch are higher. Should I be worried about those changes?
It’s been quite around here, I hope everyone is doing well.
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Rabbit - I prep for scans by fasting, so you're not alone. Instead of the juice, I eat prunes to stay regular. Wish you the best on your upcoming scans.
I beat it - Is it just this one time that they're out of normal range?
I'm switching to tablets later this week (cycle 12, 125 mg). It'll be nice not to worry about taking it with food.
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Rabbit - best of luck on those scans this week. When I scanned about five weeks ago it was mid-afternoon so I initially considered going in early to get a souvlaki from a stand nearby for lunch. Then I thought good god, how would a wad of halloumi/pita/veggies look on a scan? The shame! I think they call it an 'artifact' - like when gas clouds x-ray images. That or it would look like a new 12 cm tumor on my sternum. I also considered the poor techs that have to stand-by and situate and yeah, they probably didn't want me exhaling red onion and tzatziki.
The writer David Sedaris has a short story about his constipation when he went to summer camp in Greece and how sitting down to a heavy Greek meal three times a day was an exercise akin to packing a musket. That phrase occurred to me as I chose to have a late breakfast of an apple and peanut butter (post coffee) instead. I got my souvlaki the next week after injections.
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Rabbit- Funny, but so true. I have Prune Juice in the fridge at all times. And, yes, before scan day I make sure I am cleaned out. One scan, early on, said "Patient is constipated" or something like that. So from then on I do the Juice before a scan. I want the radiologist to concentrate on the cancer, not the BM. Pocket duty for your scan days.
I-beat-it--- I would just check those labs again the next time. Probably no big deal.
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Rabbit,
In your pocket for your upcoming scans. I have seen different measurements on different scans, and I always fret over them. It would be nice to get a consistent person reading one's scans consistently. Alas, I don't think that's the way of the world these days in most instances.
OMG, Sondra, I howled about your story, and also the packing the musket comment. That was my laugh for the day.
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D’you know I didn’t think the scan and poo thing was actually a thing....until my nurse commented on the fact that a report mentioned that my bowels were full and I needed a poo. At the time I told her I always need a poo... the drugs make sure of that!
I think I’ll be making sure my scan appointments are later in the day, after I’ve emptied out my system! Who’d have thought! 🤷🏼♀️
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My last two scans have said they were unable to see because of constipation. Ugh. One said obstipation. I was like, what the hell is that? It’s worse, I guess. I will be making sure I’m not constipated next time. Thinking of you and wishing you the best on your scans.
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Whew! Boy is that a relief to not be alone regarding the cicle of life involving our colons and scans. I get nervous about eating the wrong thing before a bone scan because with Ibrance you dont know what will accompany an innocent puff, either you'll clear out a room or be running out of the room yourself towards a bathroom with your hand on your butt like a cork. I'm on the table for 35 to 45 mins for a bone scan that I'm in essence trapped down to, I dont want to be like excuse me emergency and then have to wait for her to unvelcro me so I can gracefully and forcefully make a dash, thankfully the bathroom is close to the machine but...thank you thank you ladies for the smiles and total understanding of a hidden dilemma.
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Yeah, that bone scan gurney is a trench - I flailed like a turtle on its back trying to get out of it.
BevJen (or anyone else) - the book that short story is in is called Naked, although Me Talk Pretty One Day and Dress Your Family In Corduroy & Denim are also good. They are easy to grab for a quick pick me up funny read. Naked is probably the best one due to the last story about his trip to a nudist camp.
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I think we need a new thread called "Constipation, of lack thereof"! It would be hilarious, if only it weren't so true. Ok, so maybe it's still hilarious - to us, anyway!
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Thanks for the comments on packed bowels and scans. I'll have to make sure I really am empty the next time. Eating more chaia, and will now add prune juice. I'm wondering just how it might affect scans where things do or don't show up and how large. Last scan I was packed, this seldom hapoens to me. Several years ago, after a 2-day cleanout for colonoscopy, there was a comment that the cleanout was "poor"
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What are we like! In tomorrow for jabs so will be asking my nurse team about this and best way of dealing with it!
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Sondra,
Thanks for the book reference. Always looking for something as a pick me up. I will check those out.
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To those folks who are not getting Ibrance subsidized or free -- and who are on Medicare -- has anyone seen the price uptick in Ibrance for 2021? I am in the process of looking at my Part D Medicare plan to see if it's still the best one for me. And whomp -- the sticker price for Ibrance, which I was warned would be going up -- REALLY went up. Sticker price is now over $19,000 a month. This, of course, affect the copays under Part D. After making it through the first two stages of the Part D system (which happens in month 1 -- January -- because of the high cost) I will be paying almost $1000 per month, and that's catastrophic coverage.
Wow. Am just blown away. This past year was bad enough -- I was paying about $570 a month. But this is really ridiculous. Am going to call Pfizer to see if I can qualify for assistance but still -- way to hit people who need this drug to treat their cancer.
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BevJen,
Unconscionable!
Those of us on Medicare are subsidizing the insane cost of these drugs for others whose insurance companies can negotiate rates, which Medicare can't do. I was paying a $600+ co-pay (after $2K+ for the first two months) when I was on Ibrance. My doctor is talking about Verzenio next. I tried to find out the new cost yesterday, but the drug section of insurance company's website was not functioning.
I pray our new administration will determine how Medicare can negotiate reasonable rates for us all. I didn't work hard and painstakingly save for retirement only to spend my way into poverty paying extortionate prices for drugs which may or may not prolong my life.
Tina
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I have not seen that, Bev. WOW. I knew it would go up but not that much. It has not escaped me that Pfizer has been in the news for other reasons. They must have used the billions they have made from Ibrance to develop the vaccine. I think some serious advocating needs to be done. I've been looking for a new cause and this may be it. BTW, none of the foundations have any money right now and haven't for months. People who qualify (like me) should use Pfizer's assistance rather than the foundations since the drug companies' programs are harder to qualify for. If I stay on Ibrance, I am definitely going to use the Pfizer assistance next year.
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Tina2 and Jaycee,
Just before I started out on Ibrance, the hospital pharmacist told me that Kisqali (depending upon the dose) is less expensive than Ibrance. No knowledge about Verzenio.
Yeah, this drug industry stuff is ridiculous. I'm thankful that Pfizer just announced about a Covid vaccine, but I also see that their CEO sold some of his Pfizer stock at about the time they made that announcement. This was not an altruistic move. And the fact that the government cannot negotiate about drugs costs for Medicare is just a silly thing -- I'm not well versed enough on how that came about, but it makes me really resent Big Pharma. My husband is on insulin for his diabetes, and thank the Lord, that has now been capped in cost somewhat. But this is crazy.
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BevJen - I’m flabbergasted - freaking out of my mind with the cost of these drugs. I’m petrified to go on Medicare. Petrified. I worked hard, invested for my retirement since I was 22 and cancer may just take it all away. I went to the Ibrance Financial Assistance portion of their website today and it made me so mad. Check out the fine print under the GIANT “100%”. It’s the fine print that can bankrupt you. Grrrr.
Does anyone know what the income limit is to receive assistance from Pfizer if you are under Medicare?
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RK2020, what they do is assume people will misinterpret the word "covered." Covered means that the plan will cover SOME of the cost. Not 100% of the cost. No Medicare drug plan covers 100% of anything. There is always a copay. It is the same strategy those TV commercials use for Medicare advantage plans. Sounds like they "cover" everything. At what level do they cover it is what matters.
You qualify for Pfizer copay assistance if your income is less than 200% of the federal poverty level. FPL changes every year but I'll look it up in a sec. The foundations' cut off is 400-500% of the FPL depending on the foundation. In 2020, the FPL is about 12,000 for one person and 17,000 for two people. To figure out the 200%, multiply the FPL by 2. To figure out the 400%, multiple the FPL by 4 and so on. Pfizer has other programs besides regular copay assistance. I'm not familiar with them all.
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I was stunned when I learned it cost $14,000 a month. $19,000??? How many of us are going to die because we can't afford the medication?
Right now, I'm paying nothing. I'm covered by DH's insurance provided through his work. My "co-pay" is supposed to be $75.00, but Pfizer covers it, so I pay nothing. Next year? I haven't a clue. DH was talking about retiring in the next few years. I get this huge knot in my stomach whenever I think about losing health insurance.
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Pfizer people just told me that for a household of 2, the income ceiling is about $86,000 for free drugs. That's today's story.
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Right now, till December 7, is open enrollment for Medicare plans. Suggest those concerned contact a few insurance companies to see what they can do.
I have Humana gold Plus Advantage plan. Between them, and patient assistance fund, I have 0 dollars copay for ibrance. For the letrozole it’s $3.60.
I pay $45 for 3 vials of novalog insulin. I pay $118 for 45 OmniPod pods. Insulin delivery system.
I think that’s all reasonable.
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Interesting, BevJen. I wasn't even asked about income. When I got my first prescription for Ibrance, it came from Diplomat Specialty Pharmacy. They called me to get my information and said the co-pay was $75.00, but that Pfizer was covering that and so I would have no out-of-pocket expense. Then. (I don't know why) the pharmacy switched to Ingenio Rx, and I still have no co-pay. I'm starting cycle 6 today. (4 cycles of 125 mg and now at 100 mg).
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Spookiesmom is correct -- it's open enrollment season for Medicare, until December 7. That's what prompted me to re-check my Part D prescription plan.
However, the prices that you are quoting, Spookiesmom, are for a Medicare Advantage Plan, which is more wrap-around. In some parts of the country, those are probably great. Where I live, maybe not so much. Also, some Medicare Advantage plans are restricted as to which doctors you can see. For me, that would be a problem because I want to be able to seek out other doctors than my single MO who might have a different take on my situation. So I pay more for the supplemental insurance as well as for the Part D insurance.
Those of us on traditional Medicare have to contend with Medicare Part D (prescription coverage). I have been all over the medicare.gov site looking at prescription plans that are available in my area, and pretty much, after the huge hit at the beginning of the year when a subscriber then plunges into catastrophic coverage, the monthly co-pay is around 28% of the total drug cost for 2021. Total drug cost for 2021 is over $19,000, so we can all do the math. It truly sucks.
And RK2020, what Jaycee said. Yes, you can see that huge display on the page of "100%." That doesn't mean 100% coverage of the cost -- only that the drug(s) are covered by the plan.
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Bev, when you apply to Pfizer, they won't give you anything if there is foundation money available. They will refer you to a foundation with funds available. That $86,000 is 5 times the FPL for two people. 5 x 17,000 or 85,000. They may already know the FPL values for next year. That's my guess. When I qualified a few years ago, it was 200% for assistance from Pfizer. They either don't want you to know that or have dropped that plan.
OK, I just looked at Pfizer's financial assistance website. They have upped their cut off to 400% like the foundations. Good to know. If you get assistance from Pfizer, it runs a calendar year. At least it used to. Grants from foundations last as long as the money lasts. Usually 6-8 months. I guess that will be less now. PAN grants have been $5400. I better go back to the Pfizer website and see if they changed that, too.
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I still have my old employers group health plan, with COBRA. My out of pocket cost for Ibrance is $35 a month and Letrozole is $8 a month. I will qualify for Medicare and a supplemental after 2 years on Social Security Disability--- so Jan 2022. I hope that I will be able to afford the meds at that time. Sounds like my COBRA is pretty good for med coverage--- but premium is $1100 a month. So... what can you say.
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Candy,
You are lucky to have those copays. But, traditional Medicare isn't free, either. There is a fee based upon previous year's income that is deducted from your SS check. Supplemental policy prices are all over the place. And the Part D plans in my area range from about $17 up to about $90, depending upon drugs and what kinds of pharmacies you want to use. And then the co-pays on the drugs are on TOP of that.
Our medical system is messed up. I don't know the answer, but it's messed up.
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