[Retired813]

Extramedullary myeloma in lymph nodes - what to do?

by Retired813 on Fri Mar 28, 2014 2:14 pm

I originally posted this on another thread, but then thought I should make it a new topic. I read here daily and I'm amazed at how much many of you know. Medical terms just make no sense to me -- it may as well be a different language, or my brain just can't take it all in. Some of the stuff I've read is scary sounding, and maybe its denial, or just fear, that I can't take it all in.

Anyway, I have been reading through this thread regularly because I have several plasmacytomas in lymph nodes. The one under my arm is huge.

I'm on Velcade / dex weekly, and I wonder if its enough. I had been on Revlimid / dex, but had to stop taking it because of constant nausea and feeling terrible. I ended up in the ICU for 5 days with heart / lung failure and infection in my heart muscle (?). The doctor stopped treatments for a time, as the protein level was low enough and she thought it would be best while I recover from the heart / lung issues.

It was a terrible thing to go thru. I've been fine since, except in August I found the big tumor under my arm. Now I am on the Velcade / dex, but wonder if something else should be added.

I know the doctor feels like I'm at risk due to the heart / lung issues, but I've been recovering from that very well. I wonder if my doctor is being a little too safe with me. Plus I want these tumors gone. I hate the big one under my arm. I hate that I can feel it.

Last edited by Retired813 on Sat Mar 29, 2014 2:30 pm, edited 1 time in total.

[Multibilly]

Re: Extramedullary myeloma in lymph nodes - what to do?

by Multibilly on Fri Mar 28, 2014 5:34 pm

Extramedullary disease can be quite a challenge to treat.

Have you discussed the possibility of localized treatment of the plasmacytomas with radiation? Depending on how localized these tumors are, this may be an option.

Are you working with a doctor that specializes in multiple myeloma?

[Retired813]

Re: Extramedullary myeloma in lymph nodes - what to do?

by Retired813 on Sat Mar 29, 2014 2:29 pm

Multibilly asked: "Have you discussed the possibility of localized treatment of the plasmacytomas with radiation? Depending on how localized these tumors are, this may be an option. ... Are you working with a doctor that specializes in multiple myeloma?"

I did go through radiation, but it didn't help much. My doctor isn't a specialist. The distance would be to much for me to go to one.

[Multibilly]

Re: Extramedullary myeloma in lymph nodes - what to do?

by Multibilly on Sat Mar 29, 2014 4:03 pm

Hmmm. Depending on where you live, you may want to consider making a one-time trip to see a specialist. I have found that once one establishes a relationship with a specialist by doing one initial appointment in person, that you can then do follow up consults directly with that specialist (or via your local doctor) over the phone.

You can continue to do all of your labs and checkups locally with your current doc and just have the results sent to the specialist...I have found that most good docs are totally open to this kind of arrangement, especially in the case of a challenging disease like EMD.

Something to consider since working with a top specialist is probably the most important thing you can be doing to successfully deal with this insidious disease.

[Grizabella]

Re: Extramedullary myeloma in lymph nodes - what to do?

by Grizabella on Sun Mar 30, 2014 7:45 pm

I am dealing with my sister's relapse, which evolved into extramedullary disease and is now all over. Don't delay! It can get out of control very quickly. Get a PET scan done, see a specialist, or get a second opinion.

My sister is fighting for her life because of delays and misdiagnosis'. Wishing you all the best.