I have written several posts over the year about how part D works. In january it always does a hard reset so the first payment is a combination of the deductible/co-insurance to donut hole/ then finally to the catastrophic part where the cost becomes 5 percent. the biggest payment by far is the first one.
Are you all set-here it comes-lol
$2800.00
TOTAL co-pay for the year will be about 11,000 dollars
If it works for you then it’s money well spent.
Jeff
so far so good. I will be finishing the 28 day starter pack shortly. then next week the standard 400 mg a day dose.
How did your doctor manage your ramp up?
Jeff
i;m not sure what you mean. I am still on imbruvica which i have been on for year. Little worry about tumor lysis. 2 blood tests a week and a liter of saline when i get the blood test. this thursday will be end of 3rd week starter pack.
IVFN,
So once a week they draw your blood, then you take your pill and receive the saline. Then next morning you get your blood tested again? This cycle repeats itself until you’re at max dose?
Jeff
No-the first day i had a blood test and and liter of saline and was given the 28 day starter pack. I have taken all tablets so far at home. I was given a schedule that has me getting a liter of fluid tuesdays and fridays. On tuesdays i get a full blood test of cbc/differentials uric acid and metabolic panel. on fridays the blood test is uric acid and metaboliv panel only. Uric acid is most important in a way and it has stayed at around 4.2. i take 300mg of allopurinol daily
IVFN,
I’m on ibrutinib now and hope to have Venetoclax added to it at some point in time.
I’m trying to figure out how long I might be away from home.
It seems, ramp up procedures vary by doctor or protocol.
Thanks for your help.
Jeff
my doctor did not think i would have a tumor lysis issue since so long on imbruvica. i am being done totally as outpatient . it helps that i live within 10 minutes of cancer center imbruvica tends to clear lymph nodes and spleen well-less wll at clearing marrow; Venclexta clears marrow well-the rest less well. Well and less well are relative terms-they both do both to a degree
aok so far
That is just WRONG. There is no way I can afford big payments like that. There is a clinical trial at the Seattle Cancer Care Alliance accepting CLL patients...
first off part d puts the bulk of cost up front. a year co-pay will be about 11,000 dollars.
there are ways to get this copay covered by applying for low income or grants. that's a different issue
boomerbenefits.com/medicare...
When the time comes I might just have to go the FCR route if I have a choice due to the expense .
Hello may04cll
The up front costs for FCR may not be a lot better. If you have pill form of drugs, Medicare A and B will not cover cost. You will need Medicare D for ibrutinib and etc. My 6 months of B+R IV was $239,000.00 US. Only difference is it is one shot deal rather continual cost like ibrutinib. Be nice if the combo drug trials work out where you can get off the drug at some time. Blessings.
one shot deal is what i'm talking about . we don't get the pill form here in the states that's the rest of the world .
Swedish is also doing the clinical trial.
Just a question , what are your markers ? Does your CLL specialist support you taking both Ibruntnib and Venetoclax? How long will you take both for ?
Thanks and all the best
i have b-pll which is a subset of cll. I have 17p deleted and tp53 mutated(lousy i know).
In january 2019 i had a 450,000 wbc and similiar ALC. i don't remember exactly. On jan 10 2019 i started 420mg imbruvica. i got as far down as 54000 alc which has bounded up and down since july slowly rising up. she decided to add venclexta not sure i was getting resistance. I will take both for foreseeable future. when i know more i'll post. the OP was supposed to be about the part d cost. I didn't plan on going into my medical end. It did not dawn on me i would be getting so many questions on the medical part when i wrote it.
I see , that’s a great combo , I heard when you have 17p del and TP53 best to go strong out of the gate and Try and give CLL a knockout punch by adding the Venetoclax. Keep us posted and I will be hoping for the best results for you!
I feel your pain. Every January my medical and drug deductible starts anew. $1700. total for both and then of course the 20% in addition. Wishing you all the best!
That's about what I just paid. I am so relieved to be able to handle the co-pays.
Virginia
wow, that is a lot. I live in France and work for the federal government and travel to one of the bases in Germany to get mine. It's a bit of work to get there, but doesn't cost anything once I do get it.
Wow!! That's a chunk of cash. Sounds like you on a combination of drugs now?
actually no. I get my imbruvica free right now from Jand J. I am approved thru 12/31/2020. althouth because of the upfront way part d works and 5 percent max in the catastrophic part co-pay would not be twice on both drugs=probably in 18000 range
This is very scary to me that the cost is so high. I don’t know where I would come up with that kind of money.
I would pull my hair, but it is too short.
Our community held a fund raising auction with sponsors and raffles to help pay for part of the uncovered portion of a friends lung cancer med's. We raised 10% of the 16 month total.
It is my understanding that his portion was around $33,000 per month at 16 months. He was covered by Medicaid.
I am going to stack boxes and put the ladder on them so that I can reach the big bills at the top of the money tree.
JM
I thought Medicaid is basically free. I may be wrong.
medicaid in states has several forms. It is possible to get it if you not lowest income however you get higher co-pays.
there are several levels.
I am a retired retail pharmacist. Medicais -at least in mass-will put you in a managed care plan with co-pays that vary based on income levels.
Only the destitute get total covered. Medicaid also does an asset check . dependeing on your assets technically you will owe them money if you strike it rich-say a lottery ticket=or people die and a house is left behind the state-because medicaid is a joint federal/state program.
The strangest thing is most medicaid money is paid out and used by senior citizens in nursing homes. the next highest amount is women with children.
singles are a very small percentage.
also different states have some differences
You are not necessarily wrong Naka,
Basically free might be considered an interpretive expression.
In this example for interpretive expression one might ask, Is medicaid is free, if so what does it pay for and to what extent?
Answer - Unless loop of review, appeal, deny, appeal, review, de...
Being covered under medicaid does not mean that care required is covered or if it is covered when and how.
All insurance provisions are subject to a variety of interpretative qualifiers. Some qualifiers include how requests for benefits are coded, dates of submission with regard to pre-existing conditions, or a number of perspective status measures under review. This is why we often see one person get benefits that apparently should not, and another who gets denied when apparently they should receive benefits.
With regard to insurance, I would rather be lucky than good.
JM
Hawkeagle,
Did the insurance approve the GCSF injections upon review or are you still having problems?
The cost is a high one for sure! I finished my outpatient ramp up and started 400 mg two weeks ago. My bloodwork looks amazing! No problems so far (knock on wood)... You should contact Leukemia and Lymphoma Society. They have a grant that can help with the prescription cost. I'm sure you will do great on 400 mg.
Sherry
Thanks for keeping us updated on this topic...I still have a difficult time getting my head wrapped around it.
New Clinical Trial of Ibrutinib + Venetoclax for people relapsing on Ibrutinib 
Dr. O'Brien on how she treats CLL frontline and Dr. Pagel on new ways to block BTK
NHS Letter regarding covid testing and treatments for CEV Patients
Ibrutinib and Medicare 
Out of pocket cost for Imbruvica
