[yvonne116]

IgE multiple myeloma

by yvonne116 on Mon Nov 16, 2015 9:41 pm

My best friend was diagnosed with IgE multiple myeloma. There is very little information on this particular type. Does anyone know where to find more information on this type?

[Multibilly]

Re: IgE multiple myeloma

by Multibilly on Mon Nov 16, 2015 10:30 pm

Hi Yvonne,

Is your friend under the care of a top multiple myeloma specialist (this is different from a regular hematologist/oncologist that might only occasionally deal with multiple myeloma )? If you let us know what city she is in, folks on this site can make some recommendations on where to find these specialists.

IgE multiple myeloma is incredibly rare. The total number of reported cases of IgE myeloma is something on the order of 50, so information is obviously sparse, as you are already finding out. I also don't think anybody on this forum has this this version of multiple myeloma.

However, you can find some varied information on IgE myeloma by using the following site:

http://www.ncbi.nlm.nih.gov/pubmed/advanced

Simply select "Title" in the builder field menu and then type in "IgE Myeloma".

But note as your read any article from the 80's, 90's or naughties that the treatment landscape for multiple myeloma has radically changed. So, don't try to read too much into those old articles. While there are some unique disease characteristics to each multiple myeloma isotype (IgG, IgA, IgE, etc), at a high level, the treatment approaches are similar for all of the isotypes.

[yvonne116]

Re: IgE multiple myeloma

by yvonne116 on Tue Nov 17, 2015 11:12 am

She is located in Columbus Georgia. She has an oncologist, but he has never seen anyone with this type before. She is in indigent care, so there are not many options for her. They are doing everything they can to get her all of the help she can receive.

I will follow the link and see what I can find out. It is hard to know what to keep an eye on, or what questions to ask when there is so little information.

Thank you very much for the information. Any input is greatly appreciated.

[Multibilly]

Re: IgE multiple myeloma

by Multibilly on Tue Nov 17, 2015 12:03 pm

Hi Yvonne,

I'm not sure what the implications are for "indigent care" in Georgia wrt Medicaid coverage under Obamacare?

Putting aside the insurance issue for now (which I know is a huge issue), the Winship Cancer Institute at Emory University in Atlanta would be the place for her to go. I'm also wondering if a place like Winship might be interested in evaluating her case for free given the extremely unique nature of IgE myeloma? This is the contact info for Winship.

https://myelomabeacon.org/resources/treatment-centers/#Georgia

Note that Dr. Jonathan Kaufman is at Winship and is one of the advisors on this forum.