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Blood Cancers & Disorders | Last Active: Apr 28 8:35pm | Replies (72)
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We did see 3 hematologist/oncologist which I believe are at centers of excellence- Columbia NYC, JTCC Hackensack UMC, and Memorial Sloan K NYC
I hope that we can be assured he has been evaluated and diagnosed and treated properly
Last Hem/oncologist felt monitoring at this time is appropriate
We live in NJ The locations of Mayo Clinic’s for us is not close by, but I wonder if we even want to throw that option into the mix
You should be so proud of your medical accomplishments and your endurance
I wonder some days if I can endure
Thank you again for your chemical encouragement
It is so unsettling
Have a good evening
Replies to "We did see 3 hematologist/oncologist which I believe are at centers of excellence- Columbia NYC, JTCC..."
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What is the process for wanting to be evaluated at the Mayo Clinic?
How do you know which location and specialist is best?
We have been told he has an indolent form of B cell lymphoma- LPL, form of WM, Marginal zone. It is hard to know if there are specific concerns and different treatments for that variety
He has BenceJones protein, light chains, wild type cardiac amyloidosis and also a small am’t of cardiac AL He takes Xarelto for persistent AFIB
To complicate matters he wears bilateral digital aids fir a severe to profound hearing loss, pancreatic insufficiency and a history of a colectomy for diverticulitis
As I’m writing this I am feeling that he is very complex and I am not convinced who if anyone can sort it out and get it right I am beyond uncertain as to pursue it let it be and pray God will be merciful
He is 77 and we have been married for 50 years in 1/21.
Very difficult to decide next step or to pursue a 4th opinion at a Mayo Clinic I’m not sure he will even agree Help!