Bummed out this morning. Husband is 6 months post autologous stem cell transplant (ASCT) and his numbers are going back up. Will be having another bone marrow biopsy and PET done next week to assess the situation. Been on Velcade maintenance for 2 months.
Please keep us in your prayers.
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Halches - Name: Carol S
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 7/15
- Age at diagnosis: 73
Re: Numbers going back up post SCT on Velcade maintenance
Hi Carol,
Sorry to hear about your husband's numbers going up. That's a bummer.
I think it makes sense to get more data through the bone marrow biopsy and PET scan. You're on the right path, doing those. Do you know whether your husband has any chromosomal abnormalities, as would be detected through the FISH test? That's important data too, and it will be interesting to see if there are any changes in that with the new bone marrow biopsy.
Also, is your husband being treated by a myeloma specialist? If not (and maybe even if so), once you have the results of the new tests, it might be worth getting a second opinion about how to proceed from here.
Best wishes to your husband and you,
Mike
Sorry to hear about your husband's numbers going up. That's a bummer.
I think it makes sense to get more data through the bone marrow biopsy and PET scan. You're on the right path, doing those. Do you know whether your husband has any chromosomal abnormalities, as would be detected through the FISH test? That's important data too, and it will be interesting to see if there are any changes in that with the new bone marrow biopsy.
Also, is your husband being treated by a myeloma specialist? If not (and maybe even if so), once you have the results of the new tests, it might be worth getting a second opinion about how to proceed from here.
Best wishes to your husband and you,
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Numbers going back up post SCT on Velcade maintenance
Thanks for responding.
Just for reference, here are his numbers:
His M-spike has increased from 0.3 g/dL right after transplant to 0.57 g/dL in July and 0.76 g/dL two weeks later. His kappa light chain was 1.48 in May, 3.77 July, 5.19 this week.
He is under the care of a transplant / multiple myeloma specialist at Sloan Kettering as well as a local hem/onc.
Previous FISH showed no chromosomal abnormalities and his disease is considered not aggressive. August 1st was his first anniversary of diagnosis. He had CRAB at that time. Kidney function is good and CBC and CMP are normal.
Will see what happens in the next couple of weeks after results of the bone marrow biopsy and PET.
Just for reference, here are his numbers:
His M-spike has increased from 0.3 g/dL right after transplant to 0.57 g/dL in July and 0.76 g/dL two weeks later. His kappa light chain was 1.48 in May, 3.77 July, 5.19 this week.
He is under the care of a transplant / multiple myeloma specialist at Sloan Kettering as well as a local hem/onc.
Previous FISH showed no chromosomal abnormalities and his disease is considered not aggressive. August 1st was his first anniversary of diagnosis. He had CRAB at that time. Kidney function is good and CBC and CMP are normal.
Will see what happens in the next couple of weeks after results of the bone marrow biopsy and PET.
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Halches - Name: Carol S
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 7/15
- Age at diagnosis: 73
Re: Numbers going back up post SCT on Velcade maintenance
Got results back from husband’s bone marrow biopsy and PET/CT. His autologous stem cell transplant was in February of this year. Bloodwork showed numbers started to climb again in July and same when repeated 2 weeks later. Consequently, the other tests were done last week.
Just talked with his myeloma specialist. Bone marrow biopsy showed the amount of myeloma in cells stable from previous biopsy / aspiration, at less than 5%. PET/CT, however, did show some active bone involvement. Doc is optimistic that it was caught early. Have several choices for treatment. He has been on maintenance Velcade twice a month since June.
Keeping in mind husband has prostate cancer (minimal and on surveillance) and also has a pancreatic neuroendocrine tumor (pre-cancerous) that has been stable for past 10 years, doctor is a little hesitant to add Revlimid. Having said that, the choices for treatment are, in order of preference, Kyprolis (carfilzomib) with dex, or else Darzalex (daratumamab) with Revlimid and dex.
Husband is in relatively good health other than the multiple myeloma. He is almost 75. His biggest issue is bone pain. Big decision to make. He, of course, hates dex. He also doesn't want to feel lousy all the time from treatment.
Any thoughts or encouragement would be gratefully appreciated.
Just talked with his myeloma specialist. Bone marrow biopsy showed the amount of myeloma in cells stable from previous biopsy / aspiration, at less than 5%. PET/CT, however, did show some active bone involvement. Doc is optimistic that it was caught early. Have several choices for treatment. He has been on maintenance Velcade twice a month since June.
Keeping in mind husband has prostate cancer (minimal and on surveillance) and also has a pancreatic neuroendocrine tumor (pre-cancerous) that has been stable for past 10 years, doctor is a little hesitant to add Revlimid. Having said that, the choices for treatment are, in order of preference, Kyprolis (carfilzomib) with dex, or else Darzalex (daratumamab) with Revlimid and dex.
Husband is in relatively good health other than the multiple myeloma. He is almost 75. His biggest issue is bone pain. Big decision to make. He, of course, hates dex. He also doesn't want to feel lousy all the time from treatment.
Any thoughts or encouragement would be gratefully appreciated.
-
Halches - Name: Carol S
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 7/15
- Age at diagnosis: 73
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