Yervoy a.k.a Ipilimumab Clinical Trial--anyone experienced this?

fullyloved
fullyloved Member Posts: 39
edited September 2015 in Lymphoma (Hodgkin and Non-Hodgkin) #1

First, brief history. I have mediastinal Diffuse Large B cell NHL. I had R-CHOP May-Sept. 2012. Relapsed May of 2014. 2 rounds or R-ICE followed by auto stem cell transplant in August. Radiation in Oct. and Nov. 2014. Relapsed again Feb of this year. I've been doing GVD-R. It has kept the lymphoma stable, but not much more than that. I can't get any more of this chemo because I'm at the maximum dosage for Doxcyl. Anymore could substantially damage my heart. 

I'm looking at a clinical trial at Hershey Medical Center in PA that uses a combination of Ipilimumab (brand name Yervoy) and Rituxan. Ipilimumab is also an immunotherapy like Rituxan, but uses a different method. The explanation is too detailed to go into here. Ipilimumab has already been approved for late-stage melanoma and is now in trials for lymphoma. I was just wondering if anyone else has tried this medical trial. If so, what side effects did you experience? How effective was it? Any info you have might be helpful.

Thanks!

Comments

  • po18guy
    po18guy Member Posts: 1,508 Member
    #2
    I truly wonder about the

    I truly wonder about the efficacy of a single agent chemotherapy regimen against a multiple relapsed disease. Since clinical trial results are often in the 15-30% response range, there is no guarantee that a single agent would cause a response. After receiving 12 different drugs in several regimens - and two clinical trials, my double T-Cell Lymphoma (PTCL-NOS + AITL) basically stopped responding. Doctor then tried a fairly new, and not yet well known regimen on me. It is known as TREC (Treanda, Rituxan, Etoposide and Carboplatin). It specifically eliminates the horrible Doxorubicin, which I had twice before. My case is completely different from yours, but I went from two dozen tumors and small intestine involvement all the way to clean PET/CT scans in only two cycles. And, this occurred without the Rituxan, as that is not effective against most T-Cell Lymphomas. I would ask doctor to consider it, as it was tolerable and designed for lower toxicity using a new combination of existing drugs. 

    At your stage, I would seriously think about getting into a remission for a stem cell transplant, as the cancer gets smarter each time it returns. I went with a transplant, as we ran out of lymphoma drugs to use against it.

    All the best to you. 

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #3
    po18guy said:

    I truly wonder about the

    I truly wonder about the efficacy of a single agent chemotherapy regimen against a multiple relapsed disease. Since clinical trial results are often in the 15-30% response range, there is no guarantee that a single agent would cause a response. After receiving 12 different drugs in several regimens - and two clinical trials, my double T-Cell Lymphoma (PTCL-NOS + AITL) basically stopped responding. Doctor then tried a fairly new, and not yet well known regimen on me. It is known as TREC (Treanda, Rituxan, Etoposide and Carboplatin). It specifically eliminates the horrible Doxorubicin, which I had twice before. My case is completely different from yours, but I went from two dozen tumors and small intestine involvement all the way to clean PET/CT scans in only two cycles. And, this occurred without the Rituxan, as that is not effective against most T-Cell Lymphomas. I would ask doctor to consider it, as it was tolerable and designed for lower toxicity using a new combination of existing drugs. 

    At your stage, I would seriously think about getting into a remission for a stem cell transplant, as the cancer gets smarter each time it returns. I went with a transplant, as we ran out of lymphoma drugs to use against it.

    All the best to you. 

    Wow

     

    Geez, Po. I had forgotten that you had been through so much.  Your knowledge and insight, and sound advice, is remarkable. 

    max

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