[suzierose]

Re: GEP Low-Risk and MF Subtype

by suzierose on Fri Jul 27, 2012 11:04 am

Hi Ben,

I have the MF subtype, which is considered high risk, i.e. advanced/aggressive. As you noted, I have only one of the CRAB diagnostic criteria, the B (few lytic lesions). My disease is primarily asymptomatic and responded to therapy well with few side effects (mostly those due to dex).

I entered a clinical trial with Dr.Langren@ NIH for NDMM and the trial therapy consisted of 8 cycles of carfilzomib/dex/lenalidomide followed with 12 months of lenalidomide maintenance.. After 2 cycles I reached a VGPR and at the end of cycle 5 I reached sCR which was also affirmed as an MR.

At present, I am on lenalidomide maintenance for 12 months and the disease is being contained. I prefer the term contained vs. remission.

In terms of an aggressive vs.conservative approach, I focused more on QOL At present, a three drug regimen is typically considered an aggressive approach and is recommended for the MF subtype. Depending on the agents in the regimen the therapy can be conservative or highly aggressive(alkylators).

Additionally, you may know MF subtype has shown dismal outcomes with HDT followed with salvage SCT, even so I also had my cells harvested in hopes at some later date, they could find a HDT regimen that does not include alkylators, which destabilize DNA further and is suspected as the reason for the dismal outcomes, as the MF subtype typically has multiple translocations, deletions/amplifications genetic mutations. i.e. seriously destabilized DNA already (hallmark of advanced/aggressive multiple myeloma).

"Of the 7 subgroups, the MMSET/FGFR3 and MAF subgroups have been associated with inferior overall survival..snip...Patients with MAF-expressing myeloma subtypes have the poorest outcome when treated with high-dose cytotoxic chemotherapy and tandem autologous stem cell transplantation."
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3062408/

Hope this feedback helps, since multiple myeloma therapy is seriously about making informed personal decisions that work best for the individual patient, depending on where they are in life and what QOL they desire.

What criteria made it low risk for your spouse?

Wishing you and your spouse all the best!

[suzierose]

Re: GEP Low-Risk and MF Subtype

by suzierose on Fri Jul 27, 2012 11:36 am

Hi Terry!

Do you have a link for the video on Vimeo?

thanks.

Found it:
http://vimeo.com/36297053

[Ben S.]

Re: GEP Low-Risk and MF Subtype

by Ben S. on Mon Aug 06, 2012 10:31 am

Suzierose:

Sorry for the late response. I was out of town. We don't have the data underlying the GEP score and are not sure how the subtype was determined. Contrary to the characteristics of the subtype which, as you stated, include multiple translocations, the cytogenetics report accompanying the GEP one showed no translocation at all. Maybe that contributed to the low risk score. My guess is the GEP score is a weighted average of multiple factors. I even read texts referring to subtypes in the context of low and high GEP risk categories. So subtype by itself may not be sufficient in determining a patient to be high- or low-risk.

I'm really happy for you that CRD was so effective and worked so fast for you. No one knows but it just might be one of those agents that indiscriminate among particular varieties of the disease. Since the trials have not run long enough, we have the right to hope so.

All the best to you!

Ben