[DexMed]

Date of diagnosis if first smoldering, then symptomatic?

by DexMed on Fri Apr 10, 2015 3:02 pm

If someone smolders for a few years and becomes symptomatic and starts induction, what is the date of diagnosis? The date of becoming symptomatic or original date of smoldering?

[Multibilly]

Re: Date of diagnosis if first smoldering, then symptomatic?

by Multibilly on Fri Apr 10, 2015 4:25 pm

I believe it's the date of your SMM diagnosis. Or, if you started off first being diagnosed with MGUS, it would be that earlier date. If you don't mind saying, why do you ask?

[Cheryl G]

Re: Date of diagnosis if first smoldering, then symptomatic?

by Cheryl G on Fri Apr 10, 2015 7:01 pm

I think the answer to this question depends a lot on the context.

However, if you're looking at statistics about the overall survival of symptomatic multiple myeloma patients, for example, then the date of diagnosis used for those statistics is almost certainly the date each patient was diagnosed with symptomatic multiple myeloma.

I would think that, in most situations having to do with statistics, the question would be spelled out rather specifically. Most studies that have something to do with myeloma, for example, are either explicitly about newly diagnosed symptomatic myeloma, relapsed myeloma, smoldering myeloma, etc. In each of those situations, the definition of the "date of diagnosis" is going to depend on what stage of myeloma is being discussed.

[Multibilly]

Re: Date of diagnosis if first smoldering, then symptomatic?

by Multibilly on Fri Apr 10, 2015 7:22 pm

Cheryl caused me to dig into this a bit more. Note that the survival stats used by the American Cancer Society on the link below are based on when the chemotherapy started:

http://www.cancer.org/cancer/multiplemyeloma/detailedguide/multiple-myeloma-survival-rates

Yet the SEER data starts their clock at the time of diagnosis.

http://seer.cancer.gov/statfacts/html/mulmy.html

But in reality, is there really that much difference between those two dates when one is talking about symptomatic multiple myeloma?

In any case, I think Cheryl got the answer right regarding when the diagnosis clock starts for symptomatic multiple myeloma.

[DexMed]

Re: Date of diagnosis if first smoldering, then symptomatic?

by DexMed on Fri Apr 10, 2015 11:41 pm

Thanks, Multibilly & Cheryl. My doubt was related to OS stats. It makes sense to consider the date of symptomatic myeloma for prognosis purposes. I doubt if any studies are there, or even necessary, to look into the stats of those who were once smoldering were any different.

[Anonymous]

Re: Date of diagnosis if first smoldering, then symptomatic?

by Anonymous on Sun Apr 26, 2015 11:37 pm

My question is: At what time are you considered symp­to­matic?

At diag­nosis of smol­der­ing myeloma 2.5 years ago, my husband had slight anemia and stage 3 kidney issues. But, he feels fine. At what point with his labs for anemia and kidney function are these two issues considered "symptomatic?" Hope that made sense!

Also, why is IgA myeloma considered to progress faster? I have read this more than once on this site, and don 't understand. Comments please.

[DexMed]

Re: Date of diagnosis if first smoldering, then symptomatic?

by DexMed on Thu Apr 30, 2015 7:15 pm

In my case, I was smoldering for about 4.5 years when certain labs started an unfavorable trend.

I had slight anemia during the smoldering phase (HgB was generally between 11 and 12). Quarterly labs saw declines in HgB; 10.8, 10.5, 10.1, 9.8 etc (HgB dropping below 10 was one of the culprits).

Secondly, M-protein was stable around 1.5. Then it started rising, a rise of more than 0.5 in two successive readings, rising to 2.1 and 2.8 etc.

Thirdly, the IgA was high but stable, when it started rising from 2000 to 2900 - there was hardly any doubt that I had become symptomatic after about 5 years of "watchful waiting".

Finally, BMB confirmed: rising to 33% plasma cells compared to 16% before.