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My mother who is Type II
My mother who is Type II Diabetic, recently got diagnosed at Stage III of Diffuse Large B Cell Lymphoma (DLBCL) followed up with a diagnosis that at the genetic level, both c-myc and bcl-2 oncogenes are translocated.
Informally, this is known as "Double Hit Lymphoma", as it's so new in classification. It's described more in this hematology paper: http://bloodjournal.hematologylibrary.org/cgi/content/full/114/11/2273
In papers I've read, they theorize that a bcl-2 suppressor (antisense treatment) might help increase the odds (oblimersen marketed as Genasense or a BH3 mimetic such as ABT-737).
Questions:
1. Anyone chasing down such things for themselves/a loved one with double hit lymphoma?
2. Anyone have concrete suggestions for treatment beyond the basic R-CHOP which my mother is already going through?
We're in Canada (Toronto), but if there's a target Phase II or Phase III trial, we'd considered temporary relocation.
My daughter is being treated
My daughter is being treated today at Dana Faber in Boston. Dr. is leaning toward this diagnosis of DH. Wish there was a way to get in touch with you. She is 46. Lives in NH, not far from Boston and the excellent facility. I think dr is an instructor at Harvard. supposed to be very good. We are awaiting firm dx. anyway we can be in touch? Sarah
Hi Sarah. I'm sorry to hear
Hi Sarah. I'm sorry to hear about your daughter's diagnosis.
My mother, fortunately, completed six courses of R-CHOP and is so far, in remission (it's been about 4 months since the chemo came to a close).
In my research, it seemed like while there were things in the research pipeline, nothing was there for double-hit specifically. Furthermore, unless you're part of a trial, practitioners are generally not going to go off protocol. And the closest protocol they have, is for generic Diffuse Large B Cell Lymphoma.
In my mother's case, she was lucky that R-CHOP worked to put her in remission. Of course, we don't know for how long, but in retrospect, it seems to be better than a consolidative stem cell transplant would have been.
I'd be happy to offer and guidance / answer any questions I could. Let me know how to get in touch with you (email or phone) and I'll reach out.
ConcernedSon- Sorry to read
ConcernedSon-
Sorry to read about your mother's dx. Starting to see this more and more often, the dual fusion or double hit lymphoma, probably long been overlooked or diagnosed as DLBCL, Burkitt's lymphoma or B-lymphoblastic lymphoma/leukemia.
Some ongoing clinical trials and some finished trials have eschewed R-CHOP for double hit lymphoma and instead looked at DA-EPOCH-R, or dose escalated EPOCH with the addition of Rituxan. I think the trend might be in that direction. The phase II trials I had been familiar with were out of the NCI but I believe were spread out at comprehensive cancer centers across the US. Try searching the MYC and Blc-2 and lymphoma at clinicaltrials.gov.
You might want to check out this lengthy thread at supportgroups.com about dual translocation high grade B-cell lymphomas as well.
Ross
Thanks Ross. I'm going
Thanks Ross. I'm going through that other thread now. It's a gold mine in what is otherwise such little information available.
CocnernedSon- Let me know if
CocnernedSon-
Let me know if you have other questions, I'm the same Ross from that thread.
Ross
Hi; My mother was diagnosed
Hi;
My mother was diagnosed with a double hit lymphoma in November. She entered a clinical trial at Mass General Hospital in Boston. She just completed her 6th round of chemo and is going in for her 1st of 2 stem cell transplants next week. The transplant doctor is widely respected for his research and treatment of double hit lymphomas. However, there haven't been enough cases to warrant statistics.
I highly recommend finding a clinical trial like this. Until she went to Mass General and entered the trial, the oncology docs at the other hospital were at a loss with what to do for next steps.
Hope this helps.
Matt
Thanks Matt. Are you
Thanks Matt. Are you referring to this trial:
http://clinicaltrials.gov/show/NCT01181271
I was looking at that originally. Did you happen to be in the area already, or did you guys relocate to do the treatment? It's a bit trickier being in Canada, but not impossible (lots of insurance paperwork and related to try to get it covered, etc.).
I did speak to a Hematologist in the UK who suggested a BEAM autologous stem cell transplant after the 6 courses of R-CHOP. My next step is to get that discussion going with the oncology team here in Toronto.
It looks like this trial takes 2 key steps:
1. Autologous stem cell transplant
2. Allogenic stem cell transplant
Effectively, I'm going to try to go down the path of Step #1, assuming my mother is deemed healthy enough for even that.
Did you discuss DA-EPOCH-R with any of the researchers on this study or at your original hospital?
I agree that it's so new re: stats/treatment, that most places do R-CHOP x 6 and hope for the best.
we are now at brigham women's
we are now at brigham women's hospital in Boston. Daughter age 42 is finishing up the first 3 days of chemo and today getting the Ritusin. Final dx now saying double hit lymphoma. Has anyone had this dx and if so, who and where is best recommended. we have excellent dr. here at dana faber, but need more quests answered. pls. if you know anything or can provide guidance, would you pls write back on here or provide a personal email or telephone where I can talk to you. Also, after this first 3 day treatment how can we best help at home? Very much need encouragement. Thank you. Sarah