GOOD News and CRAZY News

5 years ago

GOOD: You may remember that I started chemo for multiple myeloma in June. It was expected to last 8 - 12 months. I'm too old for the stem-cell therapy that is the only 'cure' for MM, but this week I reached 'very good' numbers for one measure and plateaued 'adequately' in another measure of the stage of the disease. I can discontinue weekly chemo. Oncologists don't use terms like 'remission', but I'm 'in that ballpark' and can move to monthly maintenance chemo.

This means I can stop going to my hospital's cancer clinic every Monday for a shot of Velcade; stop taking dexamethasone that day; stop taking Acyclovir against shingles (not that that worked entirely). I'm hoping some of the side effects from these will also stop: Hair loss, blurred vision, unsteady gait, swollen joints. I will not miss the weekly *reminder* of my disease either!

Next week I see the hospital's 'MM guru' oncologist to discuss monthly maintenance meds -- likely Revlimid. This has a common risk of blood clots and aspirin is prescribed. I don't know how this will be handled, because I am aspirin-sensitive (nose and throat swell).

We are happy!

CRAZY: I hesitate to mention a downside, and we will handle it, but you may be interested. Velcade was paid 100% under Medicare Part B because it was administered in-hospital. Revlimid is an oral chemo, so it falls under Medicare Part D. Retail for it is $22,000/mo. My Aetna Part D plan's copay will average $1300/mo. The first two months copay will total $5300, then I'll be in the 'Catastrophic' category where it's $840/mo. So...$15K/year for one drug -- plus insurance premiums.

I think is is criminal that Medicare paid $8K per week for my Velcade -- boosted to $10K as of January. I think it is criminal that any drug that has been on the market for over ten years should still retail at $22K per month -- and only in America.

Featured Answer

lucillle

5 years ago

last modified: 5 years ago

I think if the price of meds is forced down far enough, Big Pharma is simply going to stop paying the multiple millions it spends researching and developing each new more effective med. There has to be some system where meds are affordable but the huge costs of development are covered to provide incentive for further research.

Chisue: Congrats on the good news!!!

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Comments (35)

rob333 (zone 7b)
5 years ago
Congratulations on moving to less treatment! It's great to get to go to the next step down!!!
greenshoekitty
5 years ago
I am happy for you . I think it is so very wrong that drugs cost so much, that is just so wrong.
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Fun2BHere
5 years ago
I hope the maintenance treatment plan is an improvement for your daily life's activities.
Alisande
5 years ago
And we are happy for you!! As for the crazy news, I agree completely.
Elmer J Fudd
5 years ago
Yes indeed, very happy and welcome news. Congrats!
girlnamedgalez8a
5 years ago
This is the best possible news you could get it seems to me. That is wonderful! About the price of treatment, just awful. This country should be embarrassed that our government will not do something about this.
PRO
Anglophilia
5 years ago
Hooray! Great Valentine's present!
gardengal48 (PNW Z8/9)
5 years ago
"This country should be embarrassed that our government will not do something about this."

Too busy talking about constructing hugely expensive and completely unnecessary border walls..........but then, consider the source. Can't expect much of anything of value from current "leadership".
sheilajoyce_gw
5 years ago
That good news makes for a wonderful Valentines Day!
yeonassky
5 years ago
last modified: 5 years ago
I agree it is wonderful news! Congratulations!

Yes it would be nice if medicine for sick people were less costly costly. My sister reacts to many of the medications and so has to have special medications that are not covered and pays out of pocket even though she's on a fixed income. It is horrible.
terilyn
5 years ago
This is fantastic news! Drug prices are out of control, something must be done.
bleusblue2
5 years ago
I am happy for you. Thank God that you can handle the expense.
marilyn_c
5 years ago
Great news! Your attitude seems so good and I think that will help you too.
User
5 years ago
Fabulous news! Congratulations! I'm so happy for you but completely empathize regarding the upcoming medicine expenses. I second bleusblue's comment. Thank God you can absorb the expense.
joyfulguy
5 years ago
Really glad to hear your good news.

As for the prices of meds - if enough of us yell to our lawmakers, maybe they'll pay some attention. In Canaia drugs are hugely expensive, as well.

ole joyful
jkayd_il5
5 years ago
Good for you. This is wonderful and happy news.
Elmer J Fudd
5 years ago
last modified: 5 years ago
Chemo drugs and other that are similar (not in widespread nor high volume use) are special cases. Such medications can be astronomically expensive, as chisue says. Although, she still has partial coverage and isn't paying the retail price.

For Americans with health insurance, more common prescription drug costs are covered to a greater or lesser degree. Mostly a greater degree. Unlike in Canada, where I understand there is NO prescription drug coverage (under many provincial plans) at all. Maybe there's a safety net in catastrophic situations like required chemo drugs but I know that many typical drugs we (Americans) all take for granted can be unsupported there.
Rusty
5 years ago
Chisue, that IS great news! ! Congratulations! I'm very happy for you both for the "very good numbers" and the "plateau", but also happy that you will be able to handle the high cost of the meds you will be taking.

Rusty
ladypat1
5 years ago
Such good news. Humbug on the $$$rxs.
blfenton
5 years ago
I am so thrilled for you! Congratulations.

We have a friend who was diagnosed with multiple myeloma 9 years ago. She qualified for the stem cell therapy and is still enjoying life. She is now 66 and going on a motorcycle tour of Africa in April.

But the pricing of the drugs is nuts.
jim_1 (Zone 5B)
5 years ago
Does this mean you might get back to Hawaii next winter?
ldstarr
5 years ago
Congratulations. I'm some happy for you.
glenda_al
5 years ago
Such great news :o)
User
5 years ago
Happy happy news on this Valentine day.
nickel_kg
5 years ago
Good news, yay! and yeah, please someone smart put some effort into getting medicine costs under control.
kathyg_in_mi
5 years ago
Contact the drug companies, or ask doctor about it. May get some help. Doesn't hurt to ask.
chisue
Original Author
5 years ago
last modified: 5 years ago
Thank you all for sharing my happiness.

If I had no drug insurance -- which American seniors are required to buy as a condition of having Medicare -- Celgene would cover most of the cost of their product, Revlimid. It's been on the market for over ten years. I am pretty sure that patients in other countries pay much less for the product. Maybe I should look 'abroad'?

jim -- The $15K every year has to come from somewhere.
maifleur01
5 years ago
While I know Medicare itself does not have a maximum out of pocket but does Part D have a maximum out of pocket?
nicole___
5 years ago
Good news on your cancer treatments. YAY!!!!
katlan
5 years ago
Fabulous news!! Check with American Cancer Assoc., possibly ck with financial aid at the hospital. My SIL did and qualified for a substantial grant on top of her own prescrption plan. She didn't need to use it all, but it was there when needed.

SIL also had MM and had the stem-cell transplant.
JustDoIt
5 years ago
Great news!

I'm currently hanging onto the "smoldering" stage of MM. Your statements regarding the costs is one thing that keeps me awake at night.
OutsidePlaying
5 years ago
Really glad to hear your good news about the MM.

Sad to say the drug companies have been in charge of drug prices for a long long time. I don’t think any of us can see a downward trend in this happening for a while. It’s bad. I’m glad you can cover it.
PKponder TX Z7B
5 years ago
I'm so happy to hear that you've reached this milestone in your recovery!
patriciae_gw
5 years ago
Congratulation! You have had the right reaction

My older sister has MM and I have a friend with it and the stem cell transplant is not a cure but it is working for many sufferers. My friend is at 8 years and doing well. My sister not so much. Such a difficult disease. Good for you.

GOOD News and CRAZY News

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