In March of 2009 my wife Roberta was diagnosed with a brain tumor AND Ed has been diagnosed with NLPHL, a rare form of Hodgkins Lymphoma. Roberta had GammaKnife treatment for her tumor and seems OK (Future MRI tests). Ed will have R-CHOP chemo for 5-6 months.
Monday, July 13, 2009
DIAGNOSIS !!!
After 4 months of waiting, I finally have a diagnosis! There was some mystery and a little disagreement between the VA pathologist and the Mayo Clinic, but the final diagnosis is that I have Nodular Lymphocyte-Predominant Hodgkin Lymphoma NLPHL. This is a vrey rare form of Hodgkins, but apparently very treatable. My oncologist gave me a choice of 1) having Rituximab only and then "living in peaceful co-existence with my cancer" or 2) having the R-CHOP chemo and standing a good chance of "Complete response" (still tryin to figure that one out). The R-CHOP will be 6-8 infusions every three weeks. Since I will probably be feeling well enough to to meaningful work at least half of the time, I have chosen the R-CHOP regimen. I shouldn't need radiation treatment afterwords. I am STAGE IIA (only tumors in my abdomin and no organ involvement (I experience no symptoms). What is still a mystery is that the internet research says that NLPHL occurs frequently in younger people and most often in the head-shoulders area and that Hodgkins is frequently treated with ABVD regimen. So, we'll start preping for August 3rd to start. We will drive down to Albuquerque (250 miles) have outpatient infusion and drive back home to Pagosa Springs, CO to endure!
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from a fellow NLPHLers best of luck with which ever choice you make. Im a 2 time survivor of this sub strain and like you said its rare and tends to relapse but it is very treatable.
ReplyDeleteNeil,
ReplyDeleteI have read your entire blog. What a journey! It is good that so many advances have been made in diagnosis and treatment. NLPHL Looks like Hodgkins but has "markers" of B-Cell. It's really a grey area. I look forward to following your posts.
Ed