Are there any signs or indicators of disease progression other than CRAB symptoms and M spike? My husband's M spike is increasing steadily, but there is zero indication of any CRAB symptoms and his light chains are not going up. So his doctors want to continue to wait before having him go back on treatment.
Should he have an MRI? Any other advice?
Forums
5 posts
• Page 1 of 1
Re: Signs of progression other than CRAB symptoms?
Hi MoLinJo,
I think that, even if the 'M' protein is increasing, but you have no CRAB symptoms and your sFLC values are still normal, your husband may not yet be in a position of relapse that would be deemed to be treatable.
Are the 'M' proteins still quite low, even though increasing?
I think that, even if the 'M' protein is increasing, but you have no CRAB symptoms and your sFLC values are still normal, your husband may not yet be in a position of relapse that would be deemed to be treatable.
Are the 'M' proteins still quite low, even though increasing?
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Signs of progression other than CRAB symptoms?
Hi MoLinJo,
As I understand it, nothing says that a relapse, or disease progression, needs to be accompanied by symptoms. Both can occur based solely on changes in lab results, something which is I believe is called a "serological relapse".
The definition of relapse in myeloma includes the possibility of CRAB-like symptoms developing as well as the possibility of relapse based solely on changes in lab results, such as a patient's M-spike. See this forum discussion and, especially, the posting by Dr. Libby in it:
https://myelomabeacon.org/forum/asymptomatic-relapse-post-stem-cell-transplant-t3009.html
I suspect your husband's doctors will want to make sure his lab results are consistently heading north before starting treatment, or changing treatment -- especially if he continues to be asymptomatic.
Good luck!
As I understand it, nothing says that a relapse, or disease progression, needs to be accompanied by symptoms. Both can occur based solely on changes in lab results, something which is I believe is called a "serological relapse".
The definition of relapse in myeloma includes the possibility of CRAB-like symptoms developing as well as the possibility of relapse based solely on changes in lab results, such as a patient's M-spike. See this forum discussion and, especially, the posting by Dr. Libby in it:
https://myelomabeacon.org/forum/asymptomatic-relapse-post-stem-cell-transplant-t3009.html
I suspect your husband's doctors will want to make sure his lab results are consistently heading north before starting treatment, or changing treatment -- especially if he continues to be asymptomatic.
Good luck!
Re: Signs of progression other than CRAB symptoms?
Hi MoJoLin,
This is a great question.
And, yes, while there are some definite indications for resuming treatment for relapsed / progressive disease (i.e., essentially CRAB criteria), ideally one would want to start treatment BEFORE bone disease or organ damage is present.
In 2011, the International Myeloma Working Group put forth criteria for "significant paraprotein relapse" based on either the rate of rise of the paraprotein within a 2-month time frame (i.e., doubling of the M-component, or an increase in the involved free light chain by 20 mg/dl) or their absolute levels (serum M-protein > 1g/dl, urine M-protein > 500 mg/24 hours) .
While these are our best criteria to date, it does not address the majority of patients with an asymptomatic relapse and a slower rise in paraprotein values. As such, and to define symptomatic disease, indeed we would use all possible tools, including PET scan and MRI, usually at the time of initial relapse / progression, and then certainly if symptoms develop or paraprotein values warrant.
So, if your husband has a slow and steady rise in M protein, but it remains at a low level, and there are no CRAB criteria, the practice to wait and watch is standard of care. However, it is reasonable to pursue more sensitive imaging, such as PET and/or MRI, which have now been incorporated into our guidelines for newly diagnosed patients in order to define symptomatic myeloma prior to the onset of bone destruction (IMWG criteria. Lancet 2014).
The good news is that, if your husband is being followed closely, he is unlikely to get into trouble.
Hope this helps!
This is a great question.
And, yes, while there are some definite indications for resuming treatment for relapsed / progressive disease (i.e., essentially CRAB criteria), ideally one would want to start treatment BEFORE bone disease or organ damage is present.
In 2011, the International Myeloma Working Group put forth criteria for "significant paraprotein relapse" based on either the rate of rise of the paraprotein within a 2-month time frame (i.e., doubling of the M-component, or an increase in the involved free light chain by 20 mg/dl) or their absolute levels (serum M-protein > 1g/dl, urine M-protein > 500 mg/24 hours) .
While these are our best criteria to date, it does not address the majority of patients with an asymptomatic relapse and a slower rise in paraprotein values. As such, and to define symptomatic disease, indeed we would use all possible tools, including PET scan and MRI, usually at the time of initial relapse / progression, and then certainly if symptoms develop or paraprotein values warrant.
So, if your husband has a slow and steady rise in M protein, but it remains at a low level, and there are no CRAB criteria, the practice to wait and watch is standard of care. However, it is reasonable to pursue more sensitive imaging, such as PET and/or MRI, which have now been incorporated into our guidelines for newly diagnosed patients in order to define symptomatic myeloma prior to the onset of bone destruction (IMWG criteria. Lancet 2014).
The good news is that, if your husband is being followed closely, he is unlikely to get into trouble.
Hope this helps!
-
Dr. Heather Landau - Name: Heather Landau, M.D.
Beacon Medical Advisor
Re: Signs of progression other than CRAB symptoms?
Hi MO
I am in a similar situation to your husband. My M spike came back after 4 years of being in complete response (zero m spike) Over the last year it has risen slowly and is now at over. 5 which is considered relapsed myeloma according to my doctor. I am holding off stating treatment as long as possible. For me this is the right decision, but not the best for everyone! I had an MRI last year when the spike appeared as well as a bone density which showed some overall thinning but nothing major (Osteopenia) I think I also had a bone survey. Now a year later I have more back pain (have had some off an on since my diagnosis) so I am expecting to get some imaging in the next few months. I've been doing a spinal MRI every so often for follow up, and yearly bone survey. I'm in Canada so PET is not used for multiple myeloma
I am in a similar situation to your husband. My M spike came back after 4 years of being in complete response (zero m spike) Over the last year it has risen slowly and is now at over. 5 which is considered relapsed myeloma according to my doctor. I am holding off stating treatment as long as possible. For me this is the right decision, but not the best for everyone! I had an MRI last year when the spike appeared as well as a bone density which showed some overall thinning but nothing major (Osteopenia) I think I also had a bone survey. Now a year later I have more back pain (have had some off an on since my diagnosis) so I am expecting to get some imaging in the next few months. I've been doing a spinal MRI every so often for follow up, and yearly bone survey. I'm in Canada so PET is not used for multiple myeloma
-
lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
5 posts
• Page 1 of 1