[DanaH]

How often to monitor smoldering myeloma?

by DanaH on Tue Jul 16, 2013 9:18 pm

Hi everyone,

How often should one be monitored if they have Smoldering Multiple Myeloma? I seem to find very mixed signals about this. Just recently found this article which appears very up to date, and I understand that Dr. Kyle is one of the top multiple myeloma authorities on MGUS/SMM and multiple myeloma.

http://m.clinicaloncology.com/Article.aspx?d=Current+Practice&d_id=155&i=July+2013&i_id=980&a_id=23652&tab=MostEmailed

And is it sound advice to have a a metastatic skeletal survey if there is any evidence of progression during follow-up if you are SMM as thr interview with Dr. Kyle appears to suggest in this article? I would think a PET/CT or MRI would be a better diagnostic tool at that point.

I am wondering if this article is actually outdated, perhaps it was not a personal interview as the Q&A style seems to imply, but more of a compilation of his "theories" based upon the article citations (which are quite dated) ? Are these conventional monitoring practices? And are these practices in a state of revision based upon more current research data? Isn't Dr. Rajkumar (Dr. Kyle's colleague @ Mayo) proposing redefining SMM/multiple myeloma?

http://www.nature.com/nrclinonc/journal/v9/n9/box/nrclinonc.2012.128_BX1.html

http://cdn2.hubspot.net/hub/187053/file-25344660-pdf/fss_symposia_summary_report.pdf?t=1364471195000

I realize multiple myeloma is a very individual disease and the specialists probably follow the "rule" book to a degree and rely upon their own clinical experiences with their own patients to set monitoring guidelines, but when you try to find this info on the internet and see experts as Dr. Kyle suggesting every 6 to 12 months, this in direct conflict with my own quarterly monitoring and I have had 30 months of stable smoldering disease state. So wondering if this is an excessive approach by my specialist and can I , in fact , "slack" off to every 6 to 12 months

Your thoughts are most appreciated as I am left with confusion once again.

[RogerAN]

Re: How often to monitor smoldering myeloma?

by RogerAN on Wed Jul 17, 2013 3:35 pm

Hi Dana
I was diagnosed with asymptomatic (smoldering) myeloma in March 2013 after being diagnosed with MGUS in 2010. My hematologist/oncologist wanted to due blood tests every 3 months and a bone marrow biopsy every six months. I saw him for my 3 month blood check last week and since my numbers were stable, he indicated that he would see me again in 6 months. He will do another blood test and, if warranted, another bone marrow biopsy. That seems quite consistent with what Dr. Kyle is recommending. I also had a baseline skeletal survey done 3 months ago and it showed no lesions (good news!). Best wishes!
Roger

[Jaksix]

Re: How often to monitor smoldering myeloma?

by Jaksix on Wed Jul 17, 2013 9:09 pm

I have been smoldering for 9 months. I see Dr. tricot every 3 months. I have blood work and 24 hour urine every 3 months. BMB once a year. PET alternated with MRI every 3 months. When I have my BMB I done have any scans. I have IGA Lambda, 10% plasma cells, bones are ok, Oligosectetory, hiding M-spike, abnormal chromosomes, 13q, 4;14, 4p6.3, 1(1q21). If you are high risk, I would not want to go any longer than 3 months in between checks. I don't want treatment while I am smoldering, but don't want too wait until kidney failure!

[DanaH]

Re: How often to monitor smoldering myeloma?

by DanaH on Thu Jul 18, 2013 5:17 pm

Thanks for your insight RogerAN and Jaksix, very much appreciate your responses,

All the best,
Dana

[tm648]

Re: How often to monitor smoldering myeloma?

by tm648 on Thu Jul 18, 2013 7:41 pm

I have been smoldering for a few years. I usually get checked quarterly, but sometimes my hematologist will move it up or back a month depending on what my numbers are doing. I had a BMB a year ago and PET bone scan a few months ago. I think 3-4 months is pretty standard.

[Multibilly]

Re: How often to monitor smoldering myeloma?

by Multibilly on Fri Jul 19, 2013 8:05 am

tm648 wrote:
> I have been smoldering for a few years. I usually get checked quarterly,
> but sometimes my hematologist will move it up or back a month depending on
> what my numbers are doing. I had a BMB a year ago and PET bone scan a few
> months ago. I think 3-4 months is pretty standard.

When I was first diagnosed with SMM, we talked about doing lab tests every 3 months. When my numbers accelerated at one point, my doc wanted to see me again in one month. When my numbers recently reversed, we scheduled the next visit for two months out. Seems like getting a lab test every 3 months is about right, unless something is really changing.

[RogerAN]

Re: How often to monitor smoldering myeloma?

by RogerAN on Fri Jul 19, 2013 10:55 am

In my earlier reply to Dana, I mentioned that my numbers were stable so that my doctor decided to see me again in six months rather than three. Actually, my IgG had dropped from just over 1900 to near 1800. He also mentioned another factor, but he seemed in a hurry so I did not get a chance to ask him about this. He told me that my "copper protein" had dropped from 29 to 21 in the past three months. I did try to do some searching on copper protein and myeloma, but found nothing.

Has anyone on the forum heard of "copper protein" as it relates to myeloma?

[Multibilly]

Re: How often to monitor smoldering myeloma?

by Multibilly on Fri Jul 19, 2013 12:27 pm

RogerAN wrote:
> In my earlier reply to Dana, I mentioned that my numbers were stable so
> that my doctor decided to see me again in six months rather than three.
> Actually, my IgG had dropped from just over 1900 to near 1800. He also
> mentioned another factor, but he seemed in a hurry so I did not get a
> chance to ask him about this. He told me that my "copper protein"
> had dropped from 29 to 21 in the past three months. I did try to do some
> searching on copper protein and myeloma, but found nothing.
>
> Has anyone on the forum heard of "copper protein" as it relates
> to myeloma?

Maybe he said "para protein" (aka M-Spike) and you heard it as "copper protein"?

[DanaH]

Re: How often to monitor smoldering myeloma?

by DanaH on Fri Jul 19, 2013 12:35 pm

Thanks again everyone, appreciate it.

RogerAN, Maybe the doctor meant KAPPA protein??? Your Free Light Chains???

Best to all,
Dana

[RogerAN]

Re: How often to monitor smoldering myeloma?

by RogerAN on Sat Jul 20, 2013 10:44 am

Dana,

I think you are right on target. My doctor has an accent that is sometimes difficult to understand clearly. I'm embarrassed to think that I missed that one.

Thanks so much!

Roger