Just Diagnosed Advanced Nodular lymphocyte predominant Hodgkin's lymphoma (NLPHL)

I remember you extremely well, Sandy. I am sorry that I look at the Boards so little the last few years. I am busy with grandkids and, well, medical problems pretty much full-time. I am even more sorry that you have been through the setbacks that you listed.

I went 11 years with no relapsing. When a lot of gross nodes were discovered, it was initially wrongly diagnosed as an autoimmune condition known as "PTGC," which is believed to be a benign, usually harmless condition. After 6-8 months of active surveillance, it had gotten so bad that it was re-biopsied. That biopsy was again wrongly diagnosed as PTGC, but was sent across the country to a specialty pathology group, which did additional microslide viewing, and it was confirmed as, in fact, NLPHL. I know that NLPHL is frequently described in more recent Journal articles as "T-cell rich," and is possibly an oddball T cell disease. Interestingly, my relapsed, heavy, stage III NLPHL was put into complete remission by the common, two-year Rituxan-alone maintenance protocol. My hematologist was impressed, but said that I must now be in very close scrutiny for life.

The takeaway of all this: you must demand the best, world-class pathology work. Always demand second opinions, and from the best of the best. Johns Hopkins, MD Anderson, and the like. The money required for the testing is a life saver.

This is like a lifetime of disease whack-a-mole. My view toward cancers has changed a bit. ANY cancer is in fact a risk for relapse. We must face new battles as they arise. Superior doctors are necessary for this. Routine doctors can do the cook book responses to "typical" strains, that behave as they are supposed to, but better minds must take over afterward. Most fundamental is correct diagnosis.

NLPHL is still regarded as recurring among all first line complete remission patients at about 15%. So, it is 'cured' for many individuals. Among those who relapse, however, the likelihood that they are in a lifelong fight goes way up. And be aware that NLPHL is apparently almost identical to Follicular NHL, so have your doctors monitor all new developments for relapsed Follicular and keep up with those journal articles and clinical trials.

You can do this !

max

Sandy

I remember you very well. Still deer hunting? I just look at deer now - I don’t shoot them anymore. They are my friends.

My first major treatment for stage 4 FNHL was in January 2011. I had Rituxan once a week for 10 weeks then once a month for a total 30+ doses ( I cannot remember the exact number) but I went into remission till November 2017 when it returned. I had been hunting (camping) in the Brooks Range in Arctic Alaska and got very sick on the way home. Almost left the airport during my layover in Chicago to go to a hospital. My local Doc prescribed chemo with more Rituxan. I decided to not continue the treatment after 4 rounds and went to Duke. The Duke Dr. put me on watch and wait and I have been fine since. My hair grew back quickly. In my non professional opinion I would initially go with Rituxan only. Its a walk in the park compared to most other therapies. I had a scare last year with my first ever palpable node but I declined treatment and after 6 months it went away on its own. So I am now on watch and wait again. But thats just me. Best of luck!

In summary Rituxan works for many people and is worth a try. But that is just an opinion, not advice.

Wonderful! Best of luck and keep us informed of your progress.

In my yard

Max is correct in that DLBCL generally requires a more drastic treatment.

My doctor told me that 1/2 of FNHL has transformed to DLBCL by year 10.

CAR-T should handle it all if you are up to it. Hoping you have second or even third opinions. I wish I had your confidence in doctors. I have a strong mistrust of the medical profession.