Originally I was diagnosed at Memorial Sloan Kettering Cancer Center with grade I fNHL. At Columbia Presbyterian, a few months later and on the basis of the same biopsy, they said grade II fNHL with diffuse. But for the last 1 1/2 years at OLM they have been saying grade III intermediate.
I'm completing a 12 month cycle of Revlimid this week (a clinical trial) and scheduled for a final CT scan. For the last few months doctors have been saying I have a complete remission. Neutropenia has been a constant side effect.
I began taking Revlimid five months after completing 8 cycles of CHOP/CVP and relapse.
Before that chemo I had become gravely ill during a 10 moth w&w period and then an unsuccessful 3 cycles of Rituxan. Original Revlimid dosage was 25 mg, which I had for first 3 months. Because I didn't want Neupogen I was given an extra week or two for neutrophils to recover between cycles. Last 4 of 5 months of the trial I took 10 mg.
I've had a good year on Revlimid. My energy level has improved and I feel fine. Of course, I am hoping remission will be durable. Just in case, I'm scheduled to harvest stem cells in November.
Sue
Update: Jan 7, 2008
To update my personal story with fNHL, I had stem cell harvest two separate times end of 2006 and early 2006 for a total of 9 days and only collected 2 million cells, which are being stored.
The good news is that although I finished the Revlimid trial in Oct 2006, I am still taking Revlimid as before and remain in complete remission. There was an are of retro peritoneal cavity that doctors thought for a long time was scar tissue and this past 6 months it is no longer present on CT/PT.
My energy level is good and side effect if any are minimal.
