I am day 60 post stem cell transplant (SCT). My pre-SCT paraprotein (M-spike) level was 12.3 g/L (1.23 g/dL). My latest level was 8.1 g/L (0.81 g/dL). I am told that day 100 is the crucial milestone. It determines if the SCT is considered a success or not.
My question is: What level is considered successful? Also what sort of drops in paraprotein level is expected from a SCT. So far, my drop seems small considering what is involved in the SCT. I am told that this figure should still drop .... time will tell.
Thanks vic
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: What post-SCT paraprotein (M-spike) indicates success?
Hi Vicstir,
Sorry, can't help you with the actual numbers - this disease is so heterogenous. I can say that my stem cell transplant wasn't a success and your numbers look a lot better than mine did. My pre-transplant paraprotein was 24 g/l (2.4 g/dL). At 6 weeks post transplant, it was 22 g/l (2.2 g/dL) and at 3 months (~100 days) it was 20 g/l (2.0 g/dL). That is the lowest it got to (from the SCT). By the next month it had started increasing again.
All the best,
Libby
Sorry, can't help you with the actual numbers - this disease is so heterogenous. I can say that my stem cell transplant wasn't a success and your numbers look a lot better than mine did. My pre-transplant paraprotein was 24 g/l (2.4 g/dL). At 6 weeks post transplant, it was 22 g/l (2.2 g/dL) and at 3 months (~100 days) it was 20 g/l (2.0 g/dL). That is the lowest it got to (from the SCT). By the next month it had started increasing again.
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: What post-SCT paraprotein (M-spike) indicates success?
I hope that you are getting better everyday.
In my practice, I wait until day 100 post-transplant before making too many decisions. At that time, I re-stage my patients: repeat SPEP, UPEP, Ig, SFLC, bone marrow biopsy, and bone survey (+/- other imaging, as the patients presentation requires). So, I would wait until you get all the information at day 100 with the collective data.
At 100 days post transplant, you are looking to see what the response was from the HDT (high dose therapy) and ASCT:
You are correct -- we are looking for the deepest response possible; the depth of response typically correlates with improved survival. This is likely a reflection of a patient's disease biology outside the context of high risk disease. Also, remember that everyone's disease is unique and truly only time will reveal your path of disease.
Also, note that you will want to consider maintenance options post-transplant. The maintenance decision, at least in my practice is determined by disease risk, disease burden at 100 days, previous tolerance of therapy, and patient wishes/thoughts.
Please update us at day 100.
In my practice, I wait until day 100 post-transplant before making too many decisions. At that time, I re-stage my patients: repeat SPEP, UPEP, Ig, SFLC, bone marrow biopsy, and bone survey (+/- other imaging, as the patients presentation requires). So, I would wait until you get all the information at day 100 with the collective data.
At 100 days post transplant, you are looking to see what the response was from the HDT (high dose therapy) and ASCT:
- PR [partial response]: >50% reduction in paraprotein (M-spike)
- VGPR [very good partial response]: >90% reduction;
- CR [complete response - a misnomer- not really complete]: negative SPEP, UPEP and iFE and bone marrow biopsy (no clonal plasma cells);
- sCR [stringent CR]: negative SPEP, UPEP, iFE, bone marrow biopsy and normalized serum free light chain ratio).
You are correct -- we are looking for the deepest response possible; the depth of response typically correlates with improved survival. This is likely a reflection of a patient's disease biology outside the context of high risk disease. Also, remember that everyone's disease is unique and truly only time will reveal your path of disease.
Also, note that you will want to consider maintenance options post-transplant. The maintenance decision, at least in my practice is determined by disease risk, disease burden at 100 days, previous tolerance of therapy, and patient wishes/thoughts.
Please update us at day 100.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: What post-SCT paraprotein (M-spike) indicates success?
Thanking you Libby and Dr Shain for your replies.
So with all things myeloma its wait and see. Lol.
I'm learning patience one way or another.
I feel ok. No worse no better then pre sct. But then I didn't feel "sick" before my diagnosis. Just had bouts of infections. I was being tested for lupus when the myeloma was discovered. I'm back at work part-time and energy increases a little each day. So can't complain.
Had anyone told me 6 weeks ago I had to have another SCT I would have told them no way, just let me die. I don't feel that way now. The first few weeks after hospital were my lowest. More mentally then physical. Getting frustrated at not being able to do the things I could do before. Like playing with kids. Looking after them instead of them looking after me. Driving, swimming even just walking the dogs.
Slowly, though, and not quite back to normal, I feel better and am able to do more things.
Vic
So with all things myeloma its wait and see. Lol.
I'm learning patience one way or another.
I feel ok. No worse no better then pre sct. But then I didn't feel "sick" before my diagnosis. Just had bouts of infections. I was being tested for lupus when the myeloma was discovered. I'm back at work part-time and energy increases a little each day. So can't complain.
Had anyone told me 6 weeks ago I had to have another SCT I would have told them no way, just let me die. I don't feel that way now. The first few weeks after hospital were my lowest. More mentally then physical. Getting frustrated at not being able to do the things I could do before. Like playing with kids. Looking after them instead of them looking after me. Driving, swimming even just walking the dogs.
Slowly, though, and not quite back to normal, I feel better and am able to do more things.
Vic
Last edited by vicstir on Fri Jul 04, 2014 4:19 pm, edited 1 time in total.
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: What post-SCT paraprotein (M-spike) indicates success?
A wonderfully revealing and educational response, Dr Shain.
Bravo.
Bravo.
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Rneb
Re: What post-SCT paraprotein (M-spike) indicates success?
Here is the update on my SCT.
I'm at about day 96. I went to my doctor yesterday. Unfortunately, my SCT was not a success. Whilst my levels dropped slightly from 12.3 to 8 g/L (1.23 to 0.8 g/dL). They are now above my pre-transplant level. Day 60ish my levels were 11.6 and although my official level is still to be assessed, my doctor said by reading my protein level it is likely that my paraprotein is over the 12's. I will find out my official level in a few more days time.
So where do I go from here? Who knows. It seems that my case has baffled "The Team" a little, as I am fortunate not to have any CRAB readings or whatever you call it. So the treatment at the moment is to sit and wait.
In one breath my doctor tells me I am high risk and my cancer is aggressive, and that we will get my siblings tested for compatibility in the near future in case of an allo. Then, in the next breath, says it is not that bad and we can just sit back and monitor me.
Very confusing.
So was the SCT worth it? At this point I'd have to say not. Would I be prepared to do it again? Yes. Do I feel I have a choice in the matter? Not really. As I have said before, my treatment is in the hands of my doctors. The hard bit is finding out what may work for me.
Vicki
I'm at about day 96. I went to my doctor yesterday. Unfortunately, my SCT was not a success. Whilst my levels dropped slightly from 12.3 to 8 g/L (1.23 to 0.8 g/dL). They are now above my pre-transplant level. Day 60ish my levels were 11.6 and although my official level is still to be assessed, my doctor said by reading my protein level it is likely that my paraprotein is over the 12's. I will find out my official level in a few more days time.
So where do I go from here? Who knows. It seems that my case has baffled "The Team" a little, as I am fortunate not to have any CRAB readings or whatever you call it. So the treatment at the moment is to sit and wait.
In one breath my doctor tells me I am high risk and my cancer is aggressive, and that we will get my siblings tested for compatibility in the near future in case of an allo. Then, in the next breath, says it is not that bad and we can just sit back and monitor me.
Very confusing.
So was the SCT worth it? At this point I'd have to say not. Would I be prepared to do it again? Yes. Do I feel I have a choice in the matter? Not really. As I have said before, my treatment is in the hands of my doctors. The hard bit is finding out what may work for me.
Vicki
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: What post-SCT paraprotein (M-spike) indicates success?
Hello All,
Just an update. My official Day 100 paraprotein level was 11.5 g/L (1.15 g/dL). My doctor called me to advise me of my level.
He has adopted a wait and see approach. I am to have another blood test in two months. He is hopeful that, even though my levels have not gone down significantly, that they may hold steady. If they do stay stable, then I will not be put onto a maintenance regime. Again, he reiterated that I am asymptomatic so.
Although I am still a little confused, I am thinking that no treatment is a good thing. Except to continue with my Zometa, Valtrex [valacyclovir] and Intragram [human immunoglobulin].
Yours Vic
P.S - Can someone tell me what the difference is between being asymptomatic and having smoldering myeloma?
Just an update. My official Day 100 paraprotein level was 11.5 g/L (1.15 g/dL). My doctor called me to advise me of my level.
He has adopted a wait and see approach. I am to have another blood test in two months. He is hopeful that, even though my levels have not gone down significantly, that they may hold steady. If they do stay stable, then I will not be put onto a maintenance regime. Again, he reiterated that I am asymptomatic so.
Although I am still a little confused, I am thinking that no treatment is a good thing. Except to continue with my Zometa, Valtrex [valacyclovir] and Intragram [human immunoglobulin].
Yours Vic
P.S - Can someone tell me what the difference is between being asymptomatic and having smoldering myeloma?
-
vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
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