I have just had a SCT on August 13 2011 and have been out of hospital for nearly 2 weeks. When I had the SCT my quantization was 16 and September 6 it came down to13 . My hematologist has just contacted me saying that I will need another SCT in October as the levels have not come down enough. I have LgG lambda and was diagnosed on march 17 2011 and my level was 46 and after 3 months of CTD the level got down to 9 then cam off CTD to prep for SCT. I had one treatment of chemotherapy with melphalan but now for the second SCT they are going to give me 4 days of cyclophosphamide. My questions are 1 do you think they are not waiting long enough to see the levels come down more and 2 why are they changing the chemotherapy .
I am in Australia but see that you guys in the USA wait for 100days to see if the SCT has worked
Any info would be great
Thanks
Paul Burgess
Forums
5 posts
• Page 1 of 1
Re: Second autologous transplant
If you live in Texas and need a second auto transpant and are in the assigned risk pool you are out of luck unless you have $235,000 to pay for it under BlueCross, they have a $300,000 cap on stem cell transplants, I pay $1200 a month payment to them under the assigned risk pool Gov Perry has let them set up vs the preexisting condition insurance President Obama got passed, I cannot move to another state that has elected to use the federal preexisting insurance which allows 2 transplants and collections unless i go naked for 6 months and buy my own Revlimid every month and pray I dont relapse before the 6 months before eligible to draw benefits kicks in???
My transplant cost $250,000 on a $300,000 cap on transplant but they collected enuff stem cells for 2 transplants?? WTF was that for???
How is your insurance handled where you live?? Do you have a $5000 deductable and a $7500 out of pocket expense like multiple myeloma patients do in the Texas Blue Cross assigned risk pool Texas elected to run??? Hope you don't have to worry like i do over this alas???? I am paying $25,000 plus a year cash and can't get a second transplant due to the regulations that penalize you if your home state has a crummy multiple myeloma assigned risk transplant rule like Texas and Gov Perry has here??
My transplant cost $250,000 on a $300,000 cap on transplant but they collected enuff stem cells for 2 transplants?? WTF was that for???
How is your insurance handled where you live?? Do you have a $5000 deductable and a $7500 out of pocket expense like multiple myeloma patients do in the Texas Blue Cross assigned risk pool Texas elected to run??? Hope you don't have to worry like i do over this alas???? I am paying $25,000 plus a year cash and can't get a second transplant due to the regulations that penalize you if your home state has a crummy multiple myeloma assigned risk transplant rule like Texas and Gov Perry has here??
Re: Second autologous transplant
Hi
In Australia we are very lucky that we have Medicare which when using the public system will cover all the cost of myeloma treatment and if you are unemployed or on a pension all the medications cost $5.60 per prescription . I have private health insurance and pay approx $230 per month for my wife and I . I have to pay a $450 excess each year for private hospital treatment which let's me choose my specialist and hospital and I have no waiting for a hospital bed but in the pubic system you have to wait your turn for treatment but again it costs nothing but a small Medicare levy at tax time which is payed by all tax payers and based on your yearly income.
For me I chose the private route . I pay $5.60 for each of my medications which have included thalidomide, dexmethasone, cyclaphosphamide,fluconzole and all other associated medication and all medication,stem cell collection and transplant are all paid for by Medicare and my insurer without question. And even if I need a third transplant it is all covered.the only out of pocket expenses I incur are small gap payments for my specialists consultations out of hospital but in hospital they are covered by Medicare. Also all blood work and tests are also free. I know we have it good in Australia and it take a great deal of stress from me as it is one less thing I have to worry about.
Hope this answers your questions and you get better soon
Paul
In Australia we are very lucky that we have Medicare which when using the public system will cover all the cost of myeloma treatment and if you are unemployed or on a pension all the medications cost $5.60 per prescription . I have private health insurance and pay approx $230 per month for my wife and I . I have to pay a $450 excess each year for private hospital treatment which let's me choose my specialist and hospital and I have no waiting for a hospital bed but in the pubic system you have to wait your turn for treatment but again it costs nothing but a small Medicare levy at tax time which is payed by all tax payers and based on your yearly income.
For me I chose the private route . I pay $5.60 for each of my medications which have included thalidomide, dexmethasone, cyclaphosphamide,fluconzole and all other associated medication and all medication,stem cell collection and transplant are all paid for by Medicare and my insurer without question. And even if I need a third transplant it is all covered.the only out of pocket expenses I incur are small gap payments for my specialists consultations out of hospital but in hospital they are covered by Medicare. Also all blood work and tests are also free. I know we have it good in Australia and it take a great deal of stress from me as it is one less thing I have to worry about.
Hope this answers your questions and you get better soon
Paul
-
Paul Burgess
Re: Second autologous transplant
You are correct Paul.
In general and internationally, restaging of multiple myeloma to determine response is performed 90-100 days after Day 0 of the autologus stem cell transplant.
In general and internationally, restaging of multiple myeloma to determine response is performed 90-100 days after Day 0 of the autologus stem cell transplant.
-
Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Second autologous transplant
Paul,
Another Aussie here so interested to follow your story. I did STC on May 12. Protein at 4 prior to STC. By 3 months my proteins were down to 2 so was recommended to consider second SCT. Decided to wait, and use Curcumin (Turmeric) .Proteins fell to 1 but now seem stuck there. So will do SCT #2 at 5 months.
Another Aussie here so interested to follow your story. I did STC on May 12. Protein at 4 prior to STC. By 3 months my proteins were down to 2 so was recommended to consider second SCT. Decided to wait, and use Curcumin (Turmeric) .Proteins fell to 1 but now seem stuck there. So will do SCT #2 at 5 months.
-
Mike C.
5 posts
• Page 1 of 1