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Back from Stanford

illead's picture
illead
Posts: 846
Joined: Aug 2012

In our hotel room that is.  What a good idea to stay over!  We would be in bumper to bumper and not home till 8 or 9 at least.  Now we are getting ready to walk across the street for Thai food.  It is pretty much what we thought, we mainly just hurried up to wait but they were very accomodating.  The doctor told us it is a no brainer.  With the new drug (Ibrutinib) just off trials for MCL only, it is the only thing they have and it is a miracle drug so far but still not a cure. We found out she was the main researcher.  Everything is kind of a catch-22.  She does not suggest an SCT until he is in remission and it will only give him more time but not a cure.  She is very positive about the Ibrutinib keeping him in remission for a long time.  They called Bill's oncologist while we were there and he said and they also agreed that there is a lot of help with paying for the drug since it is supposeddly not covered as chemo and we only have a bare minimum drug plan.  We hope so as it costs about 20,000/mo. Yes you read it right.  We will get that all figured out, but I told Bill he better be extra nice to me, I can always hide his pills Undecided.

Thank you all so much for your support and comfort, you are all so special.  We love you all, Bill & Becky 

jimwins's picture
jimwins
Posts: 2111
Joined: Aug 2011

Thanks for the update.  I love thai food by the way.  Gosh, if you have any of those pills leftover, maybe you can have it set into a ring :).  What would you call it - "Ibrutinibium"?  I did a quick search on Google and it looks like there are a lot of programs to assist so hopefully you'll be okay there. 

We love you guys too.

Jim

 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3327
Joined: May 2012

Becky,

I had kept checking to see if you had posted yet, but realized that the time zone would make it late here.

It sounds like the news was as good as anyone could have hoped for:  "Long term remission" is the best news we folks get, short of total remission, which never comes with a guarantee anyway.

A safe trip home, and bless this new treatment course,

max

Shoopy
Posts: 210
Joined: Jul 2013

Bill and Becky,

I agree that long term remission is a good thing.  I'm glad that drug is out there.  Seems like there is a drug like that coming the assembly line constantly.  That fact, plus work they are doing on gene therapy...might just mean miracles for a whole bunch of us in the coming years!

I'll provide an update on me in the next couple days...but I am so glad this new drug is available for you guys!

Karl

Rocquie's picture
Rocquie
Posts: 836
Joined: Mar 2013

Bill & Becky, like the others said, long term remission is good. I'll sure take it! As long as Bill feels fit and happy, the clinical details aren't really all that important are they? 

You are blessed to have access to this new drug that is showing so much promise. 

Bill nice to you? No, I think it is the other way around. It won't take long and he will be a Million Dollar Man. And that is something to respect!

I feel so relieved for you two lovebirds!

Rocquie

 

allmost60's picture
allmost60
Posts: 3184
Joined: Jul 2010

Hi,

  So glad the trial drug is available for Bill. $20,000.00 Money Mouth...YIKES! Makes me crazy when I see cost numbers like this for medicine. Long term remission is a good thing and what we all hope for. Best wishes and drive safely home. Much love...Sue

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3327
Joined: May 2012

B & B,

I was told at my cancer center that an injection of neulasta costs $6,000.  The reason I had asked was that I could only receive a half-injection, due to arthritis in my spine, and I was wondering if I could pay for a half-dose. I was told that it is only issued in one dose-size, and that the other half was discarded, and that my insurance would be charged $6,000, regardless.  I had wished that someone who needed it could have got the other half, but that was impossible (I have read of people denied neulasta here, for money reasons).

I did a little "dickering" (a southernism for 'analysis'), and one infusion of r-abvd (all five drugs at once) cost me right at $22,000 (EACH; I did 12 infusions; 22,000 x 12 = $264,000, just for the medications). With scans and surgeries, I figured my trreatment at right around $450,000. Most S.C.T.'s run "a cool million" dollars.  I asked my doc about this, and he said that although abvd consisted of older drugs, the price had never come down.

We were (are) blessed with great insurance, and obviously none of my meds were experimental or new, so the out-of-pocket was not devistating, just expensive.

Costs for chemo are obviously obscene and depressing. The magnitude of it causes me real sadness.  I pray that you get funding for his drug.

max

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Anonymous user (not verified)

Yes, that makes my $6,000 per Rituxan infusion almost seem reasonable. My Rituxan has cost $150,000 so far. With surgery, hospital stay and other expenses including $50,000 to MD Anderson, my insurance has paid out $412,000 since I was diagnosed. If (when?) I relapse and get the big guns it will probably hit a million and that's if I don't get an SCT.

Non-chemo drugs are the same. When my lipitor dose was cut in half (smaller pill) they still billed the same amount. Its the same price "per dose" regardless of dose size.

illead's picture
illead
Posts: 846
Joined: Aug 2012

Guess things are always more expensive in the Bay area.  We found out it is not quite as bad, only about $100/pill.  At 4/day it is only $12,000/month, an $8,000/month savings!...Phew.  We saw Bill's regular onc yesterday and they are ordering it and will let us know how much we have to pay.  One thing we read was that they only charge  the patient $25/mo but medicare is disqualified.....oh thanks.   BTW, with our other meds, we always ask our doctor to prescribe double dosage and we cut the pills in half ourselves.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3327
Joined: May 2012

I have noticed that the highest gasoline prices are always in California, in part due to state taxes, in part due to additional state pollution regulations.  At Sears or Lowes, when buying as mundane as a lawnmower, you have to select "California Version" or "Non-California" (automobiles have been like this for decades). Guess which costs more ?  The Southeast is always lowest: a gallon of reg right now is about $3.09 here. 

Guess it is part of why indstry is leaving the Rust Belt and Northeast, and headed here.  Boeing arrived in Charleston two years ago.  BMW North America, Michelin North America, Hitachi North America, Hubbell Lighting world HQ, and many others are all within 20 miles of my house.  VW North America is within 100 miles now, in Chattanooga. Incidentally, Tennessee is a state with NO (zero) income tax. Kia's main US plant is in Georgia or Alabama now.  Many gun manufactures are running South, and we love them, and their products.   Hopefully Ruger and Colt will depart Connecticut soon (very likely). F.N., a premium French gun maker, has its only US manufacturing plant in Columbia, SC now. They are a major supplier to the Department opf Defense. Contentintal Tire Corp N.A. is now 50 miles away in York, SC (just below Charlotte). 

You folks in the Northwest and Northeast keep running off corporatrions with your tax rates; we are loving it.   My firend's sister moved to Oregon years ago, into a tree house. She and her "partner" have a small solar panel, that he says will power a few lights and a hot plate.  But, they are "saving the planet," and he says they are regarded as mainstream citizens in her community.  God bless all of his creatures, whether in a house, or near the top of the leaf canopy.

max

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MChantal's picture
MChantal
Posts: 108
Joined: Apr 2013

Hi Bill and Becky,

Being the broke college student that I am when I read the "20,000/month...." Holy moley! That is ridic! You are too silly though, Kyle and I are here reading these posts about "how you can hide Bill's pills if he isn't nice to you" and "saving an $8,000 savings!" Hahaha. I think ya'll should name the Ibrutinib as "Bill's Pills" considering the price they may potentially be. If I ever encounter them in the hospital, I will make sure to refer to them as Bill's Pills Smile.

It sounds like they have a good plan set out and after reading into the Bill's Pills, it seems pretty promising.  Keep positive!

P.S.

The Friday you two were headed out to Standford; Stanford was playing The University of New Mexico (My school) in the NCAA tournament needless to say, I was not too disappointed that we loss considering they are taking care of you two. Smile

Love,

Michelle and Kyle

anliperez915's picture
anliperez915
Posts: 772
Joined: Sep 2011

Hope everything works out for Bill and of course you too! I will be keeping both of you in my prayers. I knew medicines were expensive but $20,000 WOW! That's just ridiculous I hope and pray that you don't have any issues with your insurance when the time comes for Bill's treatment. Take care sweet lady and I'm sending you a HUGE HUG!

Sincerely,
Liz

onlytoday's picture
onlytoday
Posts: 603
Joined: Jun 2010

Glad to hear that there is a plan and that drug sounds amazing!  Praying it does what they expect and MORE.

Maybe the Lymphoma Research Foundation or LLS can help with the cost?  Just a thought.

Prayers to both of you.  And prayers for a long sustained remission.

 

Hugs,

Donna

illead's picture
illead
Posts: 846
Joined: Aug 2012

That is hilarious.  Do you suppose it is the southern term for Ibrutinib? Laughing Yes we were in Stanford right before the big game.  We knew there must have been a lot of goings on at the campus.  In '67 I was in college in Oakland and I got invited to the Cal/Stanford game (big rivals) by a Berkely frat boy.  Man, I thought I was cool Cool until he looked at me horrified and asked me if I would wear my coat inside out.  It was red and that is Stanford's color! Embarassed  Becky 

 

Thank you all again for such great support.

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