I have been MGUS since 2008 and just did my first study at N.I.H. and moved into Smoldering Myeloma as of Oct. 25th, 2011. I will be going back on Curcumin and stopping any sweeteners.
I was told by N.I.H., once study in Mexico has me at the 25% percentile for advancement within 5 yrs to Myeloma and the other Study (I forgot the name) I meet 2 of 2 criteria that puts me in the
75% percentile for advancement within 5 yrs. Strangely enough, my M-Spike wasn't found, although they said it could have been a problem with the test. So they are checking for Amyloidosis, which was checked in 2010 on a GIST (Gastrointestinal Stromal Tumor) that I had and ulcerated and bleed out. That was removed with 1/3 of my stomach, both are rare, but all have one thing in common, the SDF-1A cell and Positive KIT gene. So Hopefully there will be a cure in the future, as I really want to live to have Grandchildren! Love and Prayers to Everyone here! Teresa
Forums
Re: Weekly Poll - How Long Since Your Smoldering Diagnosis?
This is a very informative poll. I would hope that the next poll might be for those with active multiple myeloma to weigh in on the question "How long did you smolder before you progressed to active multiple myeloma?"
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Aloverofsmoothjazz
Re: Weekly Poll - How Long Since Your Smoldering Diagnosis?
My brother has been diagnosed with SM on January 25th and it has been a real challenge to understand what EXACTLY all the tests mean, what tests/results are needed to ensure treatment in USA because they won't consider treatment in Canada until it is ACTIVE. I won't sit back and watch him become symptomatic and not having tried every option possible. Found and outstanding Myeloma Hotline where many of my questions were answered by a thoroughly well-informed individual. We are also looking at alternative Ayurvedic medicine to assist with recovery and maintaining a balance of the full person.
There should be a check-list of all the tests, what they mean, what strategies can be applied to promote the balance and possibly help reduce the Free Chain Kappa/Lambda ratio, what clinics are prepared to begin treatment, what the costs are for such treatment and if there are any trials available. We need to meet with the haematologist to better understand the data as well as the kidney specialist who made the referral for more tests.
As an aducator I have some coping skills to jump in and begin asking questions, what happens to the hundreds who have never finished high school and are trying to understand all the jargon. I'm sorry but all the specialists just play the 'waiting game' - not good enough for me!
There should be a check-list of all the tests, what they mean, what strategies can be applied to promote the balance and possibly help reduce the Free Chain Kappa/Lambda ratio, what clinics are prepared to begin treatment, what the costs are for such treatment and if there are any trials available. We need to meet with the haematologist to better understand the data as well as the kidney specialist who made the referral for more tests.
As an aducator I have some coping skills to jump in and begin asking questions, what happens to the hundreds who have never finished high school and are trying to understand all the jargon. I'm sorry but all the specialists just play the 'waiting game' - not good enough for me!
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Khatkur
Re: Weekly Poll - How Long Since Your Smoldering Diagnosis?
I was diagnosed with SMM on January 18, 2013. I'm still in shock and not exactly sure what to do and how to think. Due to severe anemia, the doctor wants to run more bloodwork and see me again in March. I'm a bit at a loss. This all came about so quickly and unexpectedly. I'm currently living in Hawaii with no family which adds more stress to the situation on both sides. I don't find much information regarding trials in my area so I feel like I'm at an added disadvantage. I read quite a bit about trials in Bethesda but that's such a great distance from me I feel as though I have no hope.
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