Hi All
I am starting this thread to enquire from other Australian's their experiences after autologous stem cell transplantation (ASCT). On a few other posts the question came up as to whether the Australians have access to the same medications or treatment regimes as our friends in the USA after the transplant, so I am keen to get some feedback from others downunder.
If you are post autologous stem cell transplant (ASCT), please let us know what treatments you were put on after the stem cell transplant, for how long and how are you doing now.
Our story - my husband is the one with myeloma (age 49). He was diagnosed last year in July. His M-spike at diagnosis was 78 g/L (7.8 g/dL). He was admitted to hospital the same week and put on an apheresis machine to remove some of the protein. He then had 3 cycles of VCD (Velcade, cyclophosphamide, and dex) which brought his numbers down to 24.
December 2013 he had his stem cell transplant. Apart from antibiotics he was not given any further treatments post-transplant for 3-4 months. After transplant, his M-spike was 10 and in the last tests was 8.
The doctor now has him on thalidomide and is booking him in for his first Zometa session in a few weeks. He had no bone involvement but did have some kidney trouble and anemia at diagnosis, which appears to have cleared up now.
Thanks in advance for your input
Take Care!
Forums
3 posts
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shaznics - Name: Sharon
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 48
Re: Post auto stem cell transplant experiences - Australia?
Hi Sharon,
I had my auto stem cell transplant in June 2010 at the Austin Hospital in Melbourne & an allo transplant at the Alfred Hospital (I am now in remission).
Your husband seems to have responded reasonably well to treatment . It is not uncommon to be off myeloma drugs after your transplant. His doctor probably has him on thalidomide as it is "readily" available on the PBS & is similar but not the same as Revlimid.
The myeloma clinic I attend at the Alfred is now offering young patients & those with high risk disease an allo stem cell transplant. But firstly they need to have induction therapy (probably Velcade) & then an auto SCT. Has your husband's doctor mentioned an allograft?
My history is; diagnosed with paraprotein of 67 g/L & one pathological fracture of the spine. Hospitalised & treated (4 x) with an older style chemo (VAD - Vincristine, adriamycine & dex) my paraprotein went down to 29. Followed by 9 months of thalidomide - paraprotein decreased to 21. One month off treatment paraprotein up to 24 g/L.
Then came the auto paraprotein decreased to 20 g/L. After the auto I was not on any anti-myeloma medication (the auto was a bit of a nightmare for me, so I was prescribed other medication as a result of side effects of the melphalan - along with the antibiotics that your husband is probably on). At this stage Velcade had not been approved on the PBS & there were no other drugs available. So my paraprotein increased to 29.
Velcade was approved in the October? & I had 4 cycles, taking my paraprotein down to 16. At this stage there were none of the newer drugs available & I wasn't able to qualify for clinical trials as I had kidney failure during the auto. I was very fortunate to be able to have an allo transplant.
All the best,
Libby
I had my auto stem cell transplant in June 2010 at the Austin Hospital in Melbourne & an allo transplant at the Alfred Hospital (I am now in remission).
Your husband seems to have responded reasonably well to treatment . It is not uncommon to be off myeloma drugs after your transplant. His doctor probably has him on thalidomide as it is "readily" available on the PBS & is similar but not the same as Revlimid.
The myeloma clinic I attend at the Alfred is now offering young patients & those with high risk disease an allo stem cell transplant. But firstly they need to have induction therapy (probably Velcade) & then an auto SCT. Has your husband's doctor mentioned an allograft?
My history is; diagnosed with paraprotein of 67 g/L & one pathological fracture of the spine. Hospitalised & treated (4 x) with an older style chemo (VAD - Vincristine, adriamycine & dex) my paraprotein went down to 29. Followed by 9 months of thalidomide - paraprotein decreased to 21. One month off treatment paraprotein up to 24 g/L.
Then came the auto paraprotein decreased to 20 g/L. After the auto I was not on any anti-myeloma medication (the auto was a bit of a nightmare for me, so I was prescribed other medication as a result of side effects of the melphalan - along with the antibiotics that your husband is probably on). At this stage Velcade had not been approved on the PBS & there were no other drugs available. So my paraprotein increased to 29.
Velcade was approved in the October? & I had 4 cycles, taking my paraprotein down to 16. At this stage there were none of the newer drugs available & I wasn't able to qualify for clinical trials as I had kidney failure during the auto. I was very fortunate to be able to have an allo transplant.
All the best,
Libby
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LibbyC - Name: LibbyC
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Post auto stem cell transplant experiences - Australia?
Hi Sharon,
I was diagnosed in Jan 2013, with myeloma and amyloidosis. I did one cycle of thalidomide, dex and the one that starts with a C( forget the name). I had complications from the thalidomide when I developed clots in my leg and had to have emergency surgery to get them removed. They found a hole in my heart which they closed in April. I then did 4 cycles of Velcade and dex. Then in July I had an auto. Spent 4 weeks in hospital - precaution because of the amyloidosis.
I don't have any M-spike number but I use light chains as a marker. So I am back within normal limits and haven't been on any medications except Lyrica to control pain from neuropathy - from Velcade and whatever the high dose of chemo they give you right before the transplant. Sorry I can never remember the drug names.
I have met a few people in my support group that say they would never do a SCT again. I would. I know it was hell on my body, mind, my husband and family and it's a year I would prefer not to ever repeat, but I feel heaps better than I did before - well except for my brain which, when people say chemo brain ... idea it is a real thing. I forget names and I get distracted very easily.
Where do you live? I am in Perth.
Take care
Claire
I was diagnosed in Jan 2013, with myeloma and amyloidosis. I did one cycle of thalidomide, dex and the one that starts with a C( forget the name). I had complications from the thalidomide when I developed clots in my leg and had to have emergency surgery to get them removed. They found a hole in my heart which they closed in April. I then did 4 cycles of Velcade and dex. Then in July I had an auto. Spent 4 weeks in hospital - precaution because of the amyloidosis.
I don't have any M-spike number but I use light chains as a marker. So I am back within normal limits and haven't been on any medications except Lyrica to control pain from neuropathy - from Velcade and whatever the high dose of chemo they give you right before the transplant. Sorry I can never remember the drug names.
I have met a few people in my support group that say they would never do a SCT again. I would. I know it was hell on my body, mind, my husband and family and it's a year I would prefer not to ever repeat, but I feel heaps better than I did before - well except for my brain which, when people say chemo brain ... idea it is a real thing. I forget names and I get distracted very easily.
Where do you live? I am in Perth.
Take care
Claire
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ClaireK - Name: Claire
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Feb 2013
- Age at diagnosis: 43
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