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Refractory NON-HODGKINS DLBCL

DTDG
Posts: 12
Joined: Oct 2016

Has anyone on here had refractory DLBCL?  My husband was orginally diagnosed in August 2016 with Non- Hodgkins Stage 4 DLBCL.  He was treated with R-EPOCH for 8 cycles and it  stopped working sometime in the middle of treatment.  Just did biopsy Thursday to see if it is refractory.  He is starting to hurt again in his spleen and abdomen where the swollen lymphnodes are and his abdomen is beginning to expand like it did in August.  The lymphnodes had also came back in his neck.  What other treatment options do we have? Has anyone on here experienced this?

Sal0101's picture
Sal0101
Posts: 126
Joined: Sep 2015

I was diagnosed in Sept of 2015 with stage 4 DLBCL. R-Chop put me into remission by January of 2016. That only lasted until July, 2016. i had no symptoms at all With the 2nd round.  I had a routine CT and a small spot was caught Near my lung. Relapse as they say.  My oncologist was right on it! 

R-ICE, BEAM and a stem cell transplant. September 27th, 2016 Is what I say is my new birthday!  6 months out and I'm doing pretty darn good. There are options! 

 

po18guy
Posts: 1046
Joined: Nov 2011

I haver relapsed twice witha different type of lymphoma. I do know that pathology is everything in the lymphoma world, thus his treatment options should center around any unusual mutations his tumor cells possess. That might require additional testing on the latest biopsy samples, and quite possibly by a different laboratory. It may even require treatment at a different facility, such as a cancer research center. Here are some links that might provide some hope or give direction:

http://focusondlbcl.org/Genomic-Testing-in-Characterizing-DLBCL-FL

http://www.lymphoma.org/atf/cf/%7Baaf3b4e5-2c43-404c-afe5-fd903c87b254%7D/FRONTLINE-SPRING15.PDF

DTDG
Posts: 12
Joined: Oct 2016

po18guy,

what regimens were you treated with? and what was your diagnosis?

po18guy
Posts: 1046
Joined: Nov 2011

While some of the drugs I received apply to B-Cell Lymphomas. My treatment was directed at T-Cell Lymphomas, which are a completely unrelated lymphoma. As long as pathology confirms that it is the same disease, then salvage regimens for DLBCL would apply. The question is: does doctor rely on the latest research data in decision making or fall back upon older well-known treatments? Once a lymphoma is shown to be refractory, it often qualifies for newer drugs that are not available to those in primary treatment. 

If you are in the US, I would strongly suggest traveling to an NCI designated cancer center. They employ the best and brightest and have the most highly developed facilities as well as clinical trial resreach data.

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