I have lymphoplasmacytic lymphoma, (also called waldenstrom macroglobulinemia)
It was diagnosed a little over 3 years ago, and I have to have six monthly check-ups to keep an eye on its progress, but apart from getting bouts of extreme tiredness and having a wildly erratic blood pressure (highest was 22/180 - lowest was 57/35) I feel OK.
The disease is slow acting, but treatment is palliative, rather than curable. It is a cancer of the immune system and resides insides my bone marrow, causing the production of abnormal quantities of immunoglobulin M.
I know that one day it will strike, but there's really no point in worrying - with luck old age will kill me first, anyway.
2
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4 comments
Feel free to reply to any comment by clicking the "Reply" button.Petter again welcome to the group. Any ideas or feedback is greatly appreciated.
sassygirl3869
Level 9
Apr 9, 2018
1
I was going to a support group for leukemia and lymphoma and I know they are similar affecting the blood and bone marrow. I had a bone marrow transplant in 2013 and have been in remission however, many side effects including heart failure 3 yrs ago-low blood pressure-still get dizzy and fatigue. Also my right hand is almost in a claw position -graft vs host disease. But I'm alive.
sassygirl3869
Level 9
Apr 9, 2018
1
... and kicking sassily!
That is wildly erratic BP. My mother was diagnosed with non hodgkins lymphoma later in life, too. She died at 84, was symptomatic and untreated, opted for palliative care. I find it hard not to worry...or, I should say, I go through an episode of worry until I find perspective. It sounds as if you are finding perspective. I've recently gained perspective of my Melanoma dx (6 surgeries, 1 biopsy: 2 positive stage 0). Glad you are comfortable sharing this...
crazycurlz
Level 7
Apr 9, 2018
1
You look after yourself, too. Both of us have a reasonable 5 year survival percentage - mine is 87%, yours is higher, so we may yet grow senile, ugly and obnoxious. Aaargh!!!
@Petter hahaha jaded optimism. healthy mix!
I guess its better to know that you have it but lets say you didn't. You might have less stress and have more fulfilling life. Since its probably going to strike anyway, then deal with it when that happens.
lbusche
Level 7
Apr 9, 2018
2
Since I have escaped death many times, in situations where a betting man would have laid heavy odds against me, I have developed a pretty stoical attitude to things.
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