My nephew completed an auto stem cell transplant some 65 days ago and is doing very well although the IgG level has not dropped from pretransplant levels. It's about 25% of pre-induction level. Doctor wants to do restaging, including MRI, PET, blood work, bone marrow biopsy.
How soon have others done restaging? What tests are usually part of this process? Does restaging change the approach to further treatment?
We already know the doctor is inclined towards tandem transplants – probably after a period of Revlimid. Also, is it typical during treatment and restaging not to test for the M-spike and only use the IgG as proxy? How reliable is that?
(I have described more about my nephew's case in the forum thread "Neupogen or Granix for stem cell mobilization?", started Oct 26, 2015.)
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Re: Restaging after stem cell transplant
Hello Faith:
My understanding that generally in the field, it's the "Day 100" evaluation. Our doctor explained in the case of my wife that in the early days after the ASCT, numbers tend to bounce around.
From other posters, it's not exactly done at day 100 in all cases, but usually between 80 and 100 days. Every so often you do see doctors doing it a bit earlier, I am not sure if it's pure preference, or if the doctor is looking for something specific to the case.
Good luck, JPC
My understanding that generally in the field, it's the "Day 100" evaluation. Our doctor explained in the case of my wife that in the early days after the ASCT, numbers tend to bounce around.
From other posters, it's not exactly done at day 100 in all cases, but usually between 80 and 100 days. Every so often you do see doctors doing it a bit earlier, I am not sure if it's pure preference, or if the doctor is looking for something specific to the case.
Good luck, JPC
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JPC - Name: JPC
Re: Restaging after stem cell transplant
My husband had an ASCT in October. It is my understanding bone biopsy and blood/urine testing are common protocol after ASCT. I also have heard that PET scans are being recommended more frequently. I had to ask for it.
So, post-transplant re-evaluation is common.
So, post-transplant re-evaluation is common.
Re: Restaging after stem cell transplant
Thank you, Irankin and JPC.
All the testing has now been done (at 66 days or so) and the results are in. Mostly ok though they show that my nephew is not in remission yet. We asked to delay the PET scan a bit since we have also learned that the full benefits of the stem cell transplant may not show for several months.
On the M-spike, the facility refuses to release numbers – which is rather irritating since my nephew had an M-spike value from an outside lab before he started his induction treatment. The current facility's argument is that his M proteins are settling in the beta region – not in the gamma region – thus measurement is unreliable. So they have not released any M-spike numbers for over 6 months of treatment. How can progress in treating this disease be fully assessed without tracking how the M-spike is resolving? We know the IgG levels are still somewhat elevated, although most of the blood work, including free light chains and ratio, are within range.
We will keep asking questions and are keeping fingers crossed as we wait for the next steps – maybe more Revlimid or tandem transplant or both?
All the testing has now been done (at 66 days or so) and the results are in. Mostly ok though they show that my nephew is not in remission yet. We asked to delay the PET scan a bit since we have also learned that the full benefits of the stem cell transplant may not show for several months.
On the M-spike, the facility refuses to release numbers – which is rather irritating since my nephew had an M-spike value from an outside lab before he started his induction treatment. The current facility's argument is that his M proteins are settling in the beta region – not in the gamma region – thus measurement is unreliable. So they have not released any M-spike numbers for over 6 months of treatment. How can progress in treating this disease be fully assessed without tracking how the M-spike is resolving? We know the IgG levels are still somewhat elevated, although most of the blood work, including free light chains and ratio, are within range.
We will keep asking questions and are keeping fingers crossed as we wait for the next steps – maybe more Revlimid or tandem transplant or both?
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Faith
Re: Restaging after stem cell transplant
Hi Faith:
I wanted to briefly just state that the circumstance that you state – that they did a measurement of the M-spike, but won't release the results – I have never heard of before. On a simplistic level, if the test was paid by your nephew's insurance company, on his behalf, then I think that the information belongs to him, and it should be provided to him. Good luck.
I wanted to briefly just state that the circumstance that you state – that they did a measurement of the M-spike, but won't release the results – I have never heard of before. On a simplistic level, if the test was paid by your nephew's insurance company, on his behalf, then I think that the information belongs to him, and it should be provided to him. Good luck.
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JPC - Name: JPC
Re: Restaging after stem cell transplant
JPC,
It is not clear whether they did the measurement. My nephew was just informed that the pathologist at this facility does not believe in the M-spike when it migrates to the beta region, and that we should infer this level from the serum beta value. How much of that value (2.0 -- normal range is 0.6-1.3) is normal and how much abnormal is anyone's guess. On the insurance front, we can and will check to see whether an M-spike charge is included in the billing for the myeloma panel.
I must say that I am somewhat surprised at the level of apparent inefficiency at one of the larger treatment centers in the U.S. It is clear we have to be really very well informed and also navigate around the nurses and other assistants and insist on being given direct access to the doctor (who is clearly very good but busy) to get our questions answered.
It is not clear whether they did the measurement. My nephew was just informed that the pathologist at this facility does not believe in the M-spike when it migrates to the beta region, and that we should infer this level from the serum beta value. How much of that value (2.0 -- normal range is 0.6-1.3) is normal and how much abnormal is anyone's guess. On the insurance front, we can and will check to see whether an M-spike charge is included in the billing for the myeloma panel.
I must say that I am somewhat surprised at the level of apparent inefficiency at one of the larger treatment centers in the U.S. It is clear we have to be really very well informed and also navigate around the nurses and other assistants and insist on being given direct access to the doctor (who is clearly very good but busy) to get our questions answered.
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Faith
Re: Restaging after stem cell transplant
Hi Faith,
I'm no expert, but, like JPC, I've never heard of a situation like the one you're describing. First, I think it is standard procedure to look at alpha, beta, and gamma regions all in the same SPEP test. So it seems like they should have a number for the beta region, even if the doctor doesn't trust it.
Also, I'll emphasize another point JPC mentioned: all test results are legally your nephew's property. The doctor or facility cannot simply refuse to give your nephew results when he asks for them.
With that in mind, perhaps the best thing to do is have your nephew ask for ALL test results from lab work that followed his stem cell transplant. Then you can look to see if you see anything in the results that looks like it might be the M-spike. And your nephew's doctor should be willing to discuss all the results with your nephew (and you) and answer any questions he/you has/have about them.
Finally, it is true that it does take some time for things to "settle down" after the stem cell transplant. I had re-staging done around Day +90. But my M-spike continued to drop even after that. In my case, though, it's hard to separate out long-term stem cell transplant effects vs. consolidation and maintenance treatment effects. But my doctor said he thinks the effect of the stem cell transplant kept moving my M-spike lower well past 90 days.
Best wishes to your nephew. Please keep us posted on how things go.
Mike
I'm no expert, but, like JPC, I've never heard of a situation like the one you're describing. First, I think it is standard procedure to look at alpha, beta, and gamma regions all in the same SPEP test. So it seems like they should have a number for the beta region, even if the doctor doesn't trust it.
Also, I'll emphasize another point JPC mentioned: all test results are legally your nephew's property. The doctor or facility cannot simply refuse to give your nephew results when he asks for them.
With that in mind, perhaps the best thing to do is have your nephew ask for ALL test results from lab work that followed his stem cell transplant. Then you can look to see if you see anything in the results that looks like it might be the M-spike. And your nephew's doctor should be willing to discuss all the results with your nephew (and you) and answer any questions he/you has/have about them.
Finally, it is true that it does take some time for things to "settle down" after the stem cell transplant. I had re-staging done around Day +90. But my M-spike continued to drop even after that. In my case, though, it's hard to separate out long-term stem cell transplant effects vs. consolidation and maintenance treatment effects. But my doctor said he thinks the effect of the stem cell transplant kept moving my M-spike lower well past 90 days.
Best wishes to your nephew. Please keep us posted on how things go.
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
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