[pinball]

Re: Smoldering multiple myeloma or MGUS?

by pinball on Tue Mar 15, 2016 9:57 pm

Brandyjoco - I hope your husband's results by now are avail and were fine.

Update:

Since my last post in this thread, I saw my local hem/onc in January of this year for the 1st time in almost 2 years after I began to have my case worked primarily by a major cancer center. When he reviewed my October 2015 results, he noted the following changes in the past near 2 years :

- UPEP - Bence Jones proteinuria

- Continuously rising M-spike & FLC ratio (each rise every 3 - 6 months for 2 years - approx­i­mately doubling my M spike, FLC ratio since spring 2014 when

- Development of Immunoparesis (low IgM)

The above changes are all since I began to be followed at the specialty cancer center, which originally was hoped to be a single visit - 2nd opinion - to confirm that I was "just low-risk MGUS" but though in 2014 I ended up right at the smoldering myeloma point and all major values have been evolving consistently each 3 to 6 months when tested. Thankfully no CRAB and I'm fine.

My local oncologist and the myeloma specialist believe it is time for another bone marrow biopsy (BMB), which I'll have with the usual labs in the next month or so. I'm sure nothing will change even if my M-spike, FLC ratio continue to rise and even if my bone marrow plasma cell percentage jumps up a little from 10% (just so no high-risk mutations appear). I'll just remain as I've made it the past 2 years – values on paper evolving, but no real issues outside of fevers last year at this time, which had nothing to do thankfully with smoldering myeloma.

[brandyjoco]

Re: Smoldering multiple myeloma or MGUS?

by brandyjoco on Thu Mar 17, 2016 3:37 pm

Hi Pinball,

My husband is similar to you regarding the possible venous lakes on the x-ray and there was an additional L1/L2 possible fracture. It is quite scary when an x-ray shows possible issues - but the PET scan came back all clear.

His recent 5 month results taken in February 2016 now show his 1.0 g/dL M-spike to have increased to 1.2 g/dL. The kappa was 93 and is now increased to 100. The IgG was 1751 and is now increased to 1801. So the numbers are still quite low but possibly rising. The bone marrow biopsy in November showed 10% (officially diagnosed as smoldering).

He had a Dexa scan (at my request) and has osteopenia, so he will begin taking calcium and vitamin D.

Meanwhile we have switched over to Dr. Berenson in West Beverly Hills to be our primary doctor. We are quite excited and grateful that we can live so close to a myeloma specialist. He redid the tests, and we are waiting for the results (I guess different labs show different results).

We were quite concerned when the FISH in November had showed copy gains of TP53 be­cause the oncologist (and a major hospital) interpreted that to be high-risk del(17p). However, Dr. Berenson feels that copy gains of TP53 is actually a good result and not del(17p). I certainly like to hear that and I assume with his expertise and 30 years of experience, he knows and has seen a lot. So I receive that as good news.

I pray that we travel this smoldering road for many years to come. There was a patient in his office that was smoldering for 12 years!

Next on our agenda is curcumin and green tea extract ...