[UconnFrank]

Multiple myeloma or localized amyloidosis?

by UconnFrank on Sat Jan 27, 2018 4:39 pm

So my story starts in college, when I was presenting a very raspy voice. Every ear, nose, and throat doctor I went to had no idea, said I was partying too much. Finally one doctor said he thought I had localized amyloidosis, which I did: kappa light chain localized amyloidosis of the vocal cord.

I had surgery and was fine.

Fast forward 10 years later and another lump shows up in my throat. I had surgery and it was 99% amyloidosis again, but this time less than 1% of the biopsy showed evidence of an extramedullary plasmacytoma.

I was referred to a multiple myeloma specialist and he recommended that I get radiation for 5 weeks to take care of any left over plasmacytoma. He has been monitoring me for the past 4 years with blood tests every 6 months and recently said that my light chain numbers went from 60 to 100, and said we should think about a stem cell transplant.

What?!

Could it be that my light chain numbers are up because of my localized amyloidosis?

It’s all really scary being a 38 year old father of 3 and going through all this.

[Bulan]

Re: Multiple myeloma or localized amyloidosis?

by Bulan on Tue Apr 03, 2018 11:11 am

I'm just an MGUS patient, so I can't share any experience or profound insight with you. But I really resonate with your comment about being a young parent, which I am as well. I'm wondering if I have amyloidosis, and I'm not at all comfortable with that thought! So I can sympathize with you. It's not easy, but I wish you all the best as you and your doctors figure out next steps.

[lys2012]

Re: Multiple myeloma or localized amyloidosis?

by lys2012 on Fri May 11, 2018 8:46 am

I would not get too hung up on the age. I had myeloma at 32 but was symptomatic for 2 years (misdiagnosed). The more I live with it, the more younger people are affected by it.

If your doctor is using the term plasmacytoma, then I think it is different to localized amyloidosis. Did you go through staging to make sure no other plasmacytomas are present (MRI, blood work, etc)? It is not uncommon for folks with a localized plasmacytoma to progress to more systemic disease.

I would suggest you have a detailed chat with your doctor about what your diagnosis is (relapsed light chain myeloma, or is it amyloidosis?) before agreeing to treatment.