resistant NHL

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pamr
pamr Member Posts: 5
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
My husband was diagnosed last Aug, a week after we bought a house. The onc sounded positive and said he'd be staged, treated, and monitored. During the first week he was hospitalized with a chest tube, chemo started and I got another oncologist. He has gone through CHOP, and the tumor still did not shrink significantly. We went to UPA and Hopkins for another opinion. Siblings were tested for BMT, but none were a match. Next was two treatments of IcE and then supposedly a stem cell. Well, the tumor still did not reduce in size sufficiently, so the stem cell is out.
We were told he has resistant NHL. Does anyone know what other options we might have. He's 49, and still strong. We talk to a radiation onc this Fri.

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  • nhl802
    nhl802 Member Posts: 1
    #2
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    I think talking to a radiation oncologist is a good step. I'm in a similar situation as your husband. I was diagnosed Aug 02 with High-Grade T-Cell NHL and received 6 treatments of CHOP. The CHOP reduced my tumor about 70%, however it did not put me into remission. I followed with two treamtments of DEHAP in hopes to put into remission for a stem cell transplant, however it didn't do anything at all. The day before I was scheduled to start my transplant procedure I developed a lump in my neck, which concluded that my tumor was growing rapidly again. The stem cell transplant was stopped and I'm now doing radiation therapy in hopes to control the tumor enough to do the transplant (with unrelated donor). If the radiation doesn't work, they're talking about doing ICE. Have they considered searching for an unrelated donor for your husband? If they can control the tumor with radiation this might be a good alternative. Where exactly is his tumor and how large is it? Has he had a PET scan to make sure it's not just scar tissue? I know how difficult it is to be told that the treatments aren't working, I feel like everytime I see my oncologist the news just gets worse, however I still have a positive attitude and are convinced that there's something out there that will control it. I'm 26, and feel perfectly healthy.
  • pamr
    pamr Member Posts: 5
    #3
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    nhl802 said:

    I think talking to a radiation oncologist is a good step. I'm in a similar situation as your husband. I was diagnosed Aug 02 with High-Grade T-Cell NHL and received 6 treatments of CHOP. The CHOP reduced my tumor about 70%, however it did not put me into remission. I followed with two treamtments of DEHAP in hopes to put into remission for a stem cell transplant, however it didn't do anything at all. The day before I was scheduled to start my transplant procedure I developed a lump in my neck, which concluded that my tumor was growing rapidly again. The stem cell transplant was stopped and I'm now doing radiation therapy in hopes to control the tumor enough to do the transplant (with unrelated donor). If the radiation doesn't work, they're talking about doing ICE. Have they considered searching for an unrelated donor for your husband? If they can control the tumor with radiation this might be a good alternative. Where exactly is his tumor and how large is it? Has he had a PET scan to make sure it's not just scar tissue? I know how difficult it is to be told that the treatments aren't working, I feel like everytime I see my oncologist the news just gets worse, however I still have a positive attitude and are convinced that there's something out there that will control it. I'm 26, and feel perfectly healthy.

    Chuck's tumor is located near the media stinum(sp), in his chest. The last measurement was approx 5x4cm whaich is down from 10x7cm. We met with the rad oncol today, who seems hopeful. Some side effect discussed were esophagus burns, skin burns, scaring on the lungs(slightly), and perhaps a cough for several months until the throat area would heal.
    I am glad you're optimistic. My husband is also. At this point what else can one do? You have to trust the doctors. The next match for the transplant will be at best 1/2 match. This could be his best matched sibling or our daughter. I guess different centers have different protocols.
    Good luck to you. I'll say a prayer for your continued strength and health. Thanks for the response.
  • pamr
    pamr Member Posts: 5
    #4
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    nhl802 said:

    I think talking to a radiation oncologist is a good step. I'm in a similar situation as your husband. I was diagnosed Aug 02 with High-Grade T-Cell NHL and received 6 treatments of CHOP. The CHOP reduced my tumor about 70%, however it did not put me into remission. I followed with two treamtments of DEHAP in hopes to put into remission for a stem cell transplant, however it didn't do anything at all. The day before I was scheduled to start my transplant procedure I developed a lump in my neck, which concluded that my tumor was growing rapidly again. The stem cell transplant was stopped and I'm now doing radiation therapy in hopes to control the tumor enough to do the transplant (with unrelated donor). If the radiation doesn't work, they're talking about doing ICE. Have they considered searching for an unrelated donor for your husband? If they can control the tumor with radiation this might be a good alternative. Where exactly is his tumor and how large is it? Has he had a PET scan to make sure it's not just scar tissue? I know how difficult it is to be told that the treatments aren't working, I feel like everytime I see my oncologist the news just gets worse, however I still have a positive attitude and are convinced that there's something out there that will control it. I'm 26, and feel perfectly healthy.

    I hope all is well with you. My husband has begun his radiation treatments. 7 out of 25. Johns Hopkins is suggesting a Haploid transplant. If I understand it correctly, they will mix his best matched sibling's marrow with his, in hopes of taking care of the cancer. Risk is extremely high as I guess it is with all BMT. Any other ideas, please let me know. I search all the time for info.

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