[Whatsamatteru]

Re: Are you beating the odds? 10 years+ since diagnosis?

by Whatsamatteru on Fri Nov 22, 2013 12:59 am

In alignment with an optimistic view, ten years is NOT beating the odds. It is the median for many patients, including low risk subjects undergoing total therapy or back to back transplants. And for low risk patients under the care of some NON-transplant practitioners like James Berenson, 14 years is the expectation looking BACK in time. (BTW: Berenson WAS once a big practitioner and proponent of transplants.)

[Ed L]

Re: Are you beating the odds?

by Ed L on Sat May 24, 2014 10:29 pm

I was diagnosed in October 2012 with high protein levels and 1 major tumor that deteriorated the L5 and 4 other tumors developing. After accepting this situation, the support of family and loved ones, more importantly my faith in Christ, I knew it was time to move forward.

Just prior to my scheduled chemo and radiation my doctor informed me that by miracle the 4 tumors were gone and blood level were within the levels required to do chemo. After two months of radiation to burn the tumor and then bone cement to replace the L5, I decided to take control of the things that I could. Solid and healthy diet, frequent workout routine and primarily a high protein diet has sparked my health.

As of today no tumors to report and blood levels remain stable. I accept the fact that this quiet beast may rise, but not today and only if God allows in which case His will be done. But until then, live life to its fullest, wake up every day with a purpose and spend the day living and knowing that you can!

God bless.

[KimT]

Re: Are you beating the odds? 10 years+ since diagnosis?

by KimT on Mon May 26, 2014 1:54 pm

Not a 10 year survivor (yet!) but just want to say how happy I am that those of you with both multiple myeloma and amyloidosis have posted. I was told my prognosis is much worse having both smoldering myeloma and amyloidosis. I was diagnosed last year at 53, very lucky it was found early, and I have remained very active. I intend to be a long term survivor!

Best wishes to you all!

[inky100]

Re: Are you beating the odds? 10 years+ since diagnosis?

by inky100 on Sat May 31, 2014 9:52 pm

I was diagnosed in 2005 with Stage II IgA lambda multiple myeloma. I had an auto stem cell transplant in 2006, and achieved a near complete response. My numbers rose slowly over the next four years, and I relapsed in 2011. I had another SCT in 2012, and, as of my last visit to my doctor in April, my IgA was still within normal limits.

I am very blessed to still be here, and I thank the Lord above. I have a very good doctor and wonderful friends. My outlook has, for the most part, been positive; still, there are those pesky little moments of gloom and doom. However, they are few and far between, and they don't last long -another thing I thank the Lord for.

I wish everyone all the best, and I pray that God will give us all strength for the journey.

God bless,
Mary