Don Leslie (54+)

Nhl History:
Dx:Aug.95: with Low grade ,follicular lymphoma, stage IVA, B cell, mostly small cells with some large cells, evident in BMT."bone marrow involvement" Completed 8th CHOP early Feb 97. First 3 worked,next 3 did not,hopeful 7 and 8 did. Next catscan early March.
My Que:

I have now had 8 CHOP sessions and thus have reached my limit on Big Red. Sessions 1 to 3 showed a great improvement but 4 to 6 were disappointing. I don't know what 7 and 8 did but will find out after another catscan in March. There is no doubt I will have to start in again in the future - the only question is when.

Does anyone have any idea what drugs are usually used the next time around? I asked my hemDr but forgot which one he mentioned as a possibility if I don't have to start to soon. It started with an F, that is all I can remember. Could it have been Fludarabine. A medication info sheet I have says it is used for "chronic lymphocytic leukemia." Is this the one they have been testing for NHL as well??
The "F" drug is most probably Flurdarabine. It didn't do much for me when I had it five years ago, but I've heard of others with low grade NHL getting a good response from Fludarabine. The good news is that has many fewer side effects than CHOP. After I had Flurdarabine, I had DHAP (cisplatin + ara-c + decadron), which is definitely heavy duty stuff with more side effects than CHOP.
Barry Wolman
I'm kind of in the same position as you are. I had a CT scan after my 4th treatment which showed an 80% decrease in size of the mass in my abdomen. Another scan after the 6th CHOP did not show any change at all. So my onc stopped the CHOP. He, and a tumor board, has recommended that I have DHAP chemo and follow that up with a bmt. I told him that I wanted a break and will go back in March for another scan. Since I feel ok I'm not ready to go for the bmt yet. If I knew that would get rid of it, I would do it in a heartbeat. But we all know that's not the case with low-grade NHL. I keep hoping they will come up with a cure soon.
Louise in snowy Annapolis
From what we went thru, this is not correct. Marcie was stage 4, and only had 6 for her intermediate grade involvement. But there does seem to be quite a bit of leeway and judgement calls that come into play over the course of things.
Along these same lines: I see a variety of CHOP protocols (2-3,4-6,6-8,etc) with sometime no reason for the number. I know stage and cell type have a lot to do with the decision. I would appreciate it if some would write in and give cell type, stage, and the number of CHOP courses recommended.
Fludarabine is the the one I was switched to when CVP wasn't effectituve, and I have lymphoma- low-grade b-cell diffused, It has worked beautifully.
I was dx with diffuse, small cleaved cell, intermediate grade, stage 3A. 6 rounds of CHOP were applied and I have now been in remission for about 6 months.
Don, yes, they have been testing Fludarabine for NHL for some years now, and i believe it is no longer considered experimental, there having been enough tests to show that it's effective for NHL. I read a short post on the hem-onc list a month or so ago that said it worked best combined with another drug, which i think was Cytoxin... the post said as i recall that 80% of patients treated with this combination showed improvement.
Anne in Chicago


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