Double hit lymphoma

Hi all. Recently my best friends father was diagnosed with double hit lymphoma. At first the chemo was successful, but after the 6th round it was discovered that the cancer had returned and spread through his kidneys and bladder. He is now about to start mini-BEAM treatment and relatives are being tested for stem cell transplant. As rare as this cancer is, I've found plenty of medical articles on the subject but i havent found a single story of hope or personal experience. We're taking it one day at a time, but what my friend needs most is to hear about some of the people who have survived this type of cancer or seen a true remission. I can find many blogs celebrating cancer survivors, but not a single personal story about someone who has overcome double hit lymphoma. More then anything we need hope...the personal kind, not the statistical kind. Is there anyone out there who's beaten this? Right now it seems like there is only one inevitable result....

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JP_NHL's picture
[2515]
Apr 8

You're welcome dmnd9803. As per KB's recommendation, I will start a new DHL thread. And I'll share Part II of my article when it gets published this week.

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K.B's picture
[14455]
Jul 18

TLS, here is the old thread on Double hit. Hope it helps, kb

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[70]
Aug 19

Hello All,

I don't normally post to these types of things so please bear with me. My father was diagnosed with HIV-related DLBCL in April of this year. I cannot even begin to tell you how difficult it has been not only dealing with him having cancer as well as finding out he is HIV positive. In addition, after his oncologist did other testing, it was found that he did in fact have "Double Hit". He started treatment with EPOCH where he is admitted into the hospital for 5 days with continuous chemo. He also sees an infectious disease doctor who started him on anti-retroviral therapy (HAART). After 2nd round he had a PET scan that showed dramatic improvement (I should mention here that he was stage 4B with GI involvement at time of diagnosis). He has just finished round 4 early this month and we are starting the discussion of SCT with his Onc. The problem is that there are very few documented cases of HIV-Related DHL where SCT has been used. There are so many unknowns for us and there just doesn't seem to find anyone with a personal experience such as this. Any thoughts or links to articles or contact info for people or oncologists who have seen a similar situation would be most appreciated. Thank you and good luck to all!! Keep fighting!!

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