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Diagnosed with lymphoproliferative disorder, should I be concerned?
Hi all. I have recently been told that I have lymphoproliferative disorder. Try as I might I cant find anything on the net that doesnt suggest something quite serious or some form of cancer. My referral was a routine one so I dont have the appointment with the hematologist yet and its irritating me now knowing what the implications are. Anyone have any experience or advice?
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Chaya Venkat had a very well known and well done CLL blog several years ago - but it is inactive now. Her husband with CLL also had markers for MCL, which is treated very differently, as you know. Maybe there's some useful info for you there.
Btw, not all blood cancers are lymphoid. There is AML and CML, and polycythemia vera along with some other rarer ones.
Btw, not all blood cancers are lymphoid. There is AML and CML, and polycythemia vera along with some other rarer ones.
Ok, further developments are a dx of CLL, just waiting for staging now :(
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I'm sorry to hear your bad news. I suppose you already have figured that you are at an early stage -- because you don't have enlarged nodes. Also, you probably don't have any significant marrow involvement because you haven't mentioned cytopenias.
I'd also keep an eye open for any sign of misdiagnosis. That's not likely but it's possible. I'm guessing that you are not typical because most with CLL aren't Dx'ed with lymphoproliferative disorder first.
It wouldn't hurt to be aware of the following, which is not from the fringe:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2646173/
"Turmeric and green tea: a recipe for B-Chronic Lymphocytic Leukemia"
That's something that you can do on your own and possibly delay the day of getting any harsh chemo. Maybe even delay for a long time.
I'd also keep an eye open for any sign of misdiagnosis. That's not likely but it's possible. I'm guessing that you are not typical because most with CLL aren't Dx'ed with lymphoproliferative disorder first.
It wouldn't hurt to be aware of the following, which is not from the fringe:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2646173/
"Turmeric and green tea: a recipe for B-Chronic Lymphocytic Leukemia"
That's something that you can do on your own and possibly delay the day of getting any harsh chemo. Maybe even delay for a long time.
Its atypical because I have some of the markers for MCL too. All the blood malignancies are LPDs. Hubby has CLL (dx about 5 years ago) and is on watch and wait. Blows my mind that we both have it when apparently its 200/100000 who get it O.o
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