So, my husband's M-spike has recently been going up. Had been undetectable after treatment. Started out at 0.1 g/dL (1 g/L), then 0.2, and now, 3 months later, has increased to 0.7 g/dL (7 g/L). IgG is still in range.
Doctor has mentioned that we will be looking at treatment in the future. But we did not have the results of SPEP, which lists the M-spike level, before we left his office yesterday. So we aren't scheduled to return until September.
I'm concerned that could be waiting too long. A little guidance from here would be great.
I'm pretty sure his doctor already thinks I'm a little crazy about all this already! Which of course, I am. Thank you in advance for any thoughts on this.
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Re: When to start treatment again during relapse?
Cindy:
I am sure that I do not have the exact correct authoritative answer on this, and from my readings, there are differences in opinions among the doctors. I do know that the more stringent definition of relapse is an increase of 0.5 over the best reading (serological relapse), where there are no symptoms. The idea of treating at serological relapse is to catch it before it gets out of hand and causes symptoms. I also have seen an increase of 1 as a definition of serological relapse from other doctors, and I have also as a definition of a 10% increase from the initial M Spike. If he has not been prone to having symptoms at this level of M Spike in the past, it is arguable that you could wait until the 1. I personally, would be more comfortable getting the M Spike checked more frequently than waiting for 3 months, given the data you have given. Also, be on guard for early onset of symptoms, particularly any symptoms that he may have shown to be prone to at initial diagnosis. Good luck.
I am sure that I do not have the exact correct authoritative answer on this, and from my readings, there are differences in opinions among the doctors. I do know that the more stringent definition of relapse is an increase of 0.5 over the best reading (serological relapse), where there are no symptoms. The idea of treating at serological relapse is to catch it before it gets out of hand and causes symptoms. I also have seen an increase of 1 as a definition of serological relapse from other doctors, and I have also as a definition of a 10% increase from the initial M Spike. If he has not been prone to having symptoms at this level of M Spike in the past, it is arguable that you could wait until the 1. I personally, would be more comfortable getting the M Spike checked more frequently than waiting for 3 months, given the data you have given. Also, be on guard for early onset of symptoms, particularly any symptoms that he may have shown to be prone to at initial diagnosis. Good luck.
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JPC - Name: JPC
Re: When to start treatment again during relapse?
Cindy,
I agree with JPC that you could have the blood checked monthly and the trend observed. The definition of serologic relapse is exactly what JPC said (although M-spike testing at lower levels is not always that accurate).
Many doctors prefer NOT to start treatment until there is a definite CRAB feature, and one of the best indicators of that is a PET/CT scan. Anyway, when to start treatment again is a pretty gray area and many factors need to be considered (including how long he was in remission, side effects from previous treatments, quality of life issues, and many other factors).
I agree with JPC that you could have the blood checked monthly and the trend observed. The definition of serologic relapse is exactly what JPC said (although M-spike testing at lower levels is not always that accurate).
Many doctors prefer NOT to start treatment until there is a definite CRAB feature, and one of the best indicators of that is a PET/CT scan. Anyway, when to start treatment again is a pretty gray area and many factors need to be considered (including how long he was in remission, side effects from previous treatments, quality of life issues, and many other factors).
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coachhoke - Name: coachhoke
- When were you/they diagnosed?: Apri 2012
- Age at diagnosis: 71
Re: When to start treatment again during relapse?
Hi Cindy,
I had the same question when EJ's M-spike started going up. I posted it here and Dr. Libby was kind enough to post a very thoughtful replay. Hope it helps.
"Asymptomatic relapse after stem cell transplant" (forum disc. started March 13, 2014)
It seems like your husband's M-spike went up quite a bit in three months. Are you having him re-tested to see if it was a lab error?
EJ started back on treatment when his M-spike reached 0.7 g/dl. His PET scan showed that he was developing new lesions. There are a lot of new treatments available. If you are inclined to do it, this is a good time to go and get a second opinion on his options.
Good luck!
Lyn
I had the same question when EJ's M-spike started going up. I posted it here and Dr. Libby was kind enough to post a very thoughtful replay. Hope it helps.
"Asymptomatic relapse after stem cell transplant" (forum disc. started March 13, 2014)
It seems like your husband's M-spike went up quite a bit in three months. Are you having him re-tested to see if it was a lab error?
EJ started back on treatment when his M-spike reached 0.7 g/dl. His PET scan showed that he was developing new lesions. There are a lot of new treatments available. If you are inclined to do it, this is a good time to go and get a second opinion on his options.
Good luck!
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: When to start treatment again during relapse?
Thank you for all the thoughtful replies. We are going to call the doctor next week to see if we are going to retest. These results didn't come thru till the day after his appointment, and we currently have a house full of kids and grandkids.
The good news is he doesn't have, and has never had, bone involvement, although recently he has had a lot of hip and knee pain after walking short distances.
This cancer does however have a horrible effect on his mental status, so we have to watch for that.
Thank you all very much for your help.
The good news is he doesn't have, and has never had, bone involvement, although recently he has had a lot of hip and knee pain after walking short distances.
This cancer does however have a horrible effect on his mental status, so we have to watch for that.
Thank you all very much for your help.
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