[Shon]

Diagnosed with smoldering light chain myeloma

by Shon on Wed Dec 21, 2016 10:51 pm

Hello,

I was diagnosed with smoldering light chain myeloma on October 31, 2016 at 38 years old. My kappa free light chain level was 291 mg/dL, which caused me to have a bone marrow biopsy. My biopsy showed kappa-restricted plasma cells compromising approximately 30% of the total marrow population. My serum beta 2 microglobulin serum was 2.3 mg/L.

I am not familiar with all of the medical terms yet, but I have been a guest on the site numerous times and found nothing but helpful information and decided to become a member. I read in some posts how important it is to have a myeloma specialist and made an appointment at MD Anderson Cancer Center the first of the year.

Thanks to all who have contributed in some many ways with posts and responses to posts. I hope to learn much more.

[cazzamac]

Re: Diagnosed with smoldering light chain myeloma

by cazzamac on Thu Jan 26, 2017 1:40 am

I too have smoldering myeloma. Having monthly tests. I have never joined a forum, but being here helps with learning about other peoples' experiences and just general knowledge.

Hope all is going ok.
Carol.

[Shon]

Re: Diagnosed with smoldering light chain myeloma

by Shon on Wed May 10, 2017 12:17 am

I unfortunately was mis­diag­nosed and went for my second opinion in January and right off the bat with just read my records and my ratio was told that I had multiple myeloma. A FISH analysis in month of February said I have del 17p. So not only do I have multiple myeloma, I have what is considered high-risk myeloma.

I am doing the Revlimid, Velcade, and dexamethasone (RVD) combination treatment regimen, and so far in 3 months my light chain ratio has gone down 90%. My stem cell transplant doctor recommends an allo clinical trial in which they have found 2 10/10 donors. I have 1 more cycle of treatment, 2 weeks off, and then the transplant.

I hope you are doing well. I apologize for the late response.

[Arizonan]

Re: Diagnosed with smoldering light chain myeloma

by Arizonan on Sun May 14, 2017 12:19 am

At age 38 the allo sounds like an excellent plan for you. I'm sure it will go well!

[Mark11]

Re: Diagnosed with smoldering light chain myeloma

by Mark11 on Mon May 15, 2017 8:29 am

Hi Shon,

I was diagnosed with high-risk multiple myeloma back in 2010 and I was in my early 40's. I did an allogeneic transplant in first complete response in 2011 and I am now considered cured of myeloma and I have an excellent quality of life. I consider myself very fortunate to have a doctor that recommended an early allo. Best of luck moving forward. Positive vibes being sent your way that everything goes well for you.

Mark

[Shon]

Re: Diagnosed with smoldering light chain myeloma

by Shon on Thu May 25, 2017 8:47 am

Thank you for the responses everyone. I often hear controversial things about allos.

Mark11- I am glad to see your response. I have read probably all your posts and thank you for being an allo advocate. So glad to hear that you are doing well.

I am scheduled to have transplant mid June.