LPDD vs. TCRBCL
Osulthaal
Member Posts: 2
I was diagnosed about 2 years ago with either Lymphocyte Predominance Hodgkin's Disease OR with a T-Cell Rich B-Cell (Non-Hodgkin's) lymphoma. Apparently, this is a rare combination. I was treated with 6 cycles of CHOP under the theory that the more aggressive form was the one to treat.. CT scans every 90 days since the completion of chemotherapy have indicated a response (remission) to the CHOP, until recently when an increase in the size of a mesenteric lymph node became evident. A biopsy via laparotomy a month ago has returned the same result - Either the one or the other. I must decide soon whether to accept (1) Autologous blood stem cell transplant (Not a sure thing if the indolent LPHD is the culprit); (2) Retuxan with perhaps a modified chemotherapy regimen; or (3) "Watchful Waiting". Who out there has been face with this rather rare combination, how was it treated, and how has it gone for you? I urgently await any replies pertinent to this situation.
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Comments
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Yikes! I would have LOTS of questions for my doctors including what the odds of success for each of the options and if there is a backup plan if an option isn't proving to be effective. For example...are you comfortable with option 3? I don't know if I would be...but if you are, is option 2 still something you can try at a later date? If you try option 2 will that make you too weak to do option 1 at some point? I had an autologous transplant, and high dose chemo was part of the preparation for it. They had to fix me a cocktail based on what chemo drugs I'd had my toxic doses of already. Good for you to be asking questions. Keep on asking!0
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I have also been diagnosed with LPHD (very rare) and I am currently finishing up treatment (12 tx of ABVD). I'm not sure I understand your post exactly and have a few questions for you......are they not sure whether you have lphd or tcrbcl? Or do you have both? I know in my research for lphd that it is said that watchful waiting (after relapse) may be best in some cases because of long term treatment issues, secondary cancers etc. I also understand that rituxan has been working to get lphd in remission after relapse but the remission is usually short lived (approx 13 months). My plan if relapse occurs is to try rituxan but of course your situation sounds a bit more complicated. Have you been for a second opinion? I think I would gather all the information and go from there. Please feel free to e-mail if you would like to chat.
Kathy0
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