Mar 21, 2013 - 3:58 pm
My scan came back positive and the doc says I'm back in remission. For anyone reading this who didn't see my earlier post I was diagnosed with Stage 3 Follicular NHL back in 2004, did eight rounds of CHOP-R and was in remission for seven years. Found out the FNHL was back last October and did a different treatment using Zevalin.
On the chance it might help someone reading this here's what I know about Zevalin. It can only be used when there is no, or very little, cancer in the bone marrow. It's easy (well easy compared to 22 weeks of CHOP). It starts with a dose of Rituxen followed eight days later by another dose of Rituxen and an injection containing the radio isotope Zevalin. A couple weeks of not feeling quite right (admittedly may have been psychosomatic) and that is it. The Radiologist I had says it's not as commonly used in the US but is widely used in Europe. The one down side is the drug itself is expensive at around $50k and I was told a lot of insurance companies say no the first request but most will approve it if it's resubmitted. This part seems like a non-issue to me. $50k might be a lot of money but the cost of putting in and taking out a port plus the eight rounds of CHOP with four or five Nulasta shots at $4k each (that is what they cost in 2004 --- they are probably less now) came to more than $50k. The only down side to this treatment is you don't get to take that miracle drug Prednisone (sorry - couldn't resist the joke). I've been told there is a chance it may at some time become the first line treatment for newly diagnosed FNHL patients. I'm not the one smart enough to know if that is the right thing or not but thought I'd explain it so anyone facing CHOP could at least ask about it as a possible alternative.
So as of right now I'm officially in remission round two. When I was first diagnosed and they told us about the 'treatable but incurable' side to most FNHL I told my wife I'd have to go through three rounds treatment. The first two to get into remission and the third one to get cured using some new drug invented in the future. I've now got the first two stages of that done getting into remission twice. Now some scientist needs to get that cure figured out in the next seven years so I can get cured when I relapse the next time. :)