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Questions and discussion about smoldering myeloma (i.e., diagnosis, risk of progression, potential treatment, etc.)

Treatment of high risk smoldering multiple myeloma?

by Lawrence2xl on Tue May 17, 2016 11:59 am

I am 66 and was recently diagnosed by oncologist as high risk smoldering multiple myeloma.

I am receiving IVIG every 4 weeks.

Does anyone have any thoughts regarding earlier treatment with the newer virus therapy as opposed to delayed treatment when the body and immune system are carrying a greater disease burden?

Thank you.

Lawrence2xl
Name: Lawrence
Who do you know with myeloma?: Me
When were you/they diagnosed?: March 2016
Age at diagnosis: 65

Re: Treatment of high risk smoldering multiple myeloma?

by Multibilly on Tue May 17, 2016 6:57 pm

Hi Lawrence,

There are no virus-based therapies for smoldering multiple myeloma patients that I am aware of.

Are you talking about the PVX410 vaccine clinical trials for high-risk smoldering multiple myeloma patients,

https://clinicaltrials.gov/ct2/results?term=PVX410&Search=Search

or are you thinking of the measles-virus-based trial

https://clinicaltrials.gov/ct2/show/NCT00450814 ?

Note that the former trial is not currently recruiting and the latter is only for relapsed/refractory multiple myeloma patients.

These are the only trials open to high-risk smoldering patients:

https://clinicaltrials.gov/ct2/results?term=smoldering&recr=Open

Do you know which specific factors put you into the "high risk" smoldering category?

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Treatment of high risk smoldering multiple myeloma?

by Lawrence2xl on Wed May 18, 2016 10:37 am

Appreciate your comment.

Technically I fall into the newer 'light chain multiple myeloma" diagnosis.

Bone marrow infiltration >10%, kappa / lambda ratio 0.05, classic M-spike, etc.

I read about the measles vaccine clinical trial at UAMS [related measles vaccine for myeloma discussion here in the forum]

While I am not expecting any particularly positive comment, it just seems logical that early treatment with novel therapy might have more potential for success since the body and immune system have not yet been strained to a breaking point.

Lawrence2xl
Name: Lawrence
Who do you know with myeloma?: Me
When were you/they diagnosed?: March 2016
Age at diagnosis: 65

Re: Treatment of high risk smoldering multiple myeloma?

by Multibilly on Wed May 18, 2016 6:47 pm

Unfortunately, the Mayo MV-NIS trial did not pan out when it went to phase 2.

https://myelomabeacon.org/forum/mayo-clinic-measles-trial-phase-2-t5022.html

We're all hoping that the next evolution of that MV-NIS treatment protocol will yield better results.

There's a lot of arguments for and against treating smoldering multiple myeloma early on. This may give you some food for thought on the subject:

http://www.haematologica.org/content/99/12/1769

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Treatment of high risk smoldering multiple myeloma?

by Lawrence2xl on Sun May 22, 2016 8:37 am

Excellent reference article. Thanks for the link.

Lawrence2xl
Name: Lawrence
Who do you know with myeloma?: Me
When were you/they diagnosed?: March 2016
Age at diagnosis: 65

Re: Treatment of high risk smoldering multiple myeloma?

by jhorner on Sun May 22, 2016 1:18 pm

Hello Lawrence,

I am currently being screened for the Darzalex (daratumumab) trial for high risk smoldering multiple myeloma.

https://clinicaltrials.gov/ct2/show/NCT02316106

I'm not sure where you live and if you are near a treatment facility, but this seems to be a really good trial. Phase 2, no placebo.

I also have immunoparesis and receive IVIG weekly, which led me to this decision.

J

jhorner
Name: Magpie
Who do you know with myeloma?: Myself
When were you/they diagnosed?: 2013
Age at diagnosis: 49


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