Friday, July 9, 2021

30 some types of Non Hodgkins Lymphoma

Thirty!  I go through the list and point and go, "Glad I don't have that one." It's Baskin Robbins cancer.

Mine, named for the Swedish discoverer Jan Gosta Waldenström, is kinda rare.  And, interestingly enough, my sub-flavor of it is rarer, and enough to attract the attention of bigger hematologists.  So I get a 'top of the line' second opinion.

[I'm gonna omit that umlaut 'ö' from now on and just use regular 'o']

I wonder if it is prevalent in Swedes, since I am a full quarter Swedish on my mother's side, and my Swedish grandmother was my age when she died of some form of lymphoma.  

Anyway, got an appointment with a downtown doc arranged.

The deal with Waldenstrom Macroglobulimea, aka Lympho Plasmacytic Lymphoma (not leukemia) aka LPL, is you watch it and do treatment only when body produces too many of them Macro Globules or the symptoms get too bad.

But what level is bad?

  • I got neuropathy in my extremities that is very annoying.
  • My back pain might be related to the LPL.
  • My listlessness almost certainly is.  Anemia.
What I don't have, yet, is:

  • Immunoglobulin M, aka IgM, protein count levels north of 5000.  I have half that.  You have a 50th of that.  But 5000ish often triggers treatment.  That's the Macro Globule, btw; IgM is.
  • High viscosity in my blood causing vision issues
  • Viscosity in my blood causing an elevated stroke risk
  • Diarrhea
  • Night sweats
  • Swollen lymph nodes
  • Swollen spleen or liver
Glad I don't have some of them

The treatments are two main types.  Kill the cancer cells with chemo, and thus cease production of big protein globs.  Let the good blood catch up.  The other type is to take out my blood, filter the blood plasma to get the big globs out, then put it back.  

I am having a bit of trouble tolerating the symptoms I do have.  You have heard me whinge before.  I am concerned my current pain affects my judgement.  That this is nothing compared to what is coming.  That I should wait and endure longer, and then get more out of the treatment.  That there is only so many treatments they can do that will help before they are more harm than good.  So, that is on my mind ahead of Second Opinion Mega Doctor.  


Angus McThag said...

Hipster Lymphoma?

It's pretty rare, you've probably never heard of it.

Borepatch said...

Hang in there.

MNW said...

My brother had it in HS.

It was no fun for him. Hang in there

chris said...

I posted on this before. I have same. Started with Imbruvica capsule, one per day. Then transitioned to Rituxan infusion once a week for four weeks, every 6 months. Now down to one infusion every 3 months. So fr it is working well... Keep us informed

Rituxan is classified as a monoclonal antibody. Monoclonal antibodies are a relatively new type of "targeted" cancer therapy

ProudHillbilly said...


New Jovian Thunderbolt said...

Yeah, chris, they are trying to determine if treatment now is the way to go, or to just keep observing it. going in for a second appt about that very subject. Rituximab is on their lips all the time about the treatments.