[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.
- 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
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.
Hipster Lymphoma?
ReplyDeleteIt's pretty rare, you've probably never heard of it.
My brother had it in HS.
ReplyDeleteIt was no fun for him. Hang in there
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
ReplyDeleteFrom Chemocare.com
Rituxan is classified as a monoclonal antibody. Monoclonal antibodies are a relatively new type of "targeted" cancer therapy
Hugs.
ReplyDeleteYeah, 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.
ReplyDelete