• What luck have others had with refractory diffuse large b cell lymphoma?

    Asked by pallwitz on Tuesday, September 4, 2012

    What luck have others had with refractory diffuse large b cell lymphoma?

    My husband has diffuse large b cell lymphoma. It is now considered refractory as he has not responded fully to any treatment, such as R-EPOCH, R-DHAP, GEMOX, R-CHOP, ICE, and clinical drug PTI-3276 (or something like that). Doctors say that he gets too sick inbetween treatments, so he probably would not qualify for a clinical trial. I am looking at them anyway. He is currently getting Bendamustine, which he just got this Friday. They are thinking they might try Interferon next. I need thoughts and suggestions on what to do next!? I am scared, feel alone and worry that I have to make all these decisions. He said to me tonight that he feels like he is just laying here waiting to die. :( We have two boys age 9 and 7. They need their daddy! Any help would be greatly appreciated! Please ask questions if you want more details. Kelly in Des Moines Iowa area!

    4 Answers from the Community

    4 answers
    • GregP_WN's Avatar

      Kelly, I am so sorry you are having to go through this. It is tough, I am a three time survivor, so I know what it's like to think your not going to make it, and I commend you for what your doing for your husband and your kids. That is also a tough thing to do. I had to take care of my mom and dad both in hospice care.

      I can't answer your questiion, I just want to give you some encouragement. someone on here that has gone through that will answer before long, sometimes it takes a day or so. Have you talked to anyone at the American Cancer Society about trials? There is a link at the top of the page for Resources, you will find some info there.

      Tough choices, all I can say is never give up,
      I hope you get the treatment he needs, keep fighting!

      over 8 years ago
    • Moonflay's Avatar

      Argh..I'm sorry to hear your husband is not responding to treatment. Have you looked into this?
      Bone marrow transplant?
      Stem cell transplant?

      Another article:

      You mentioned your husband gets "too sick" between treatments. In what way does he get sick? Is it due to the actual treatments?

      Tell your husband that absolutely no one's life is spent waiting to die, there is a purpose, a meaning or transition that applies to all of us. Never give up the good fight!


      over 8 years ago
    • nobrand's Avatar

      I agree with Moonflay... perhaps the stem cell transplant should be considered? I'm not 100% sure.. I have DLBCL too, but I am still pretty early on in treatment. I know the doctor says that if first line therapy should fail, I would more than likely have the stem cell route.

      Your question hits me home though... there are about 2-3 days between each treatment that I feel like such XXX, I feel that I am too waiting to die. These treatments are so hard on your body, and doubly hard on your mind. I know he is putting up a hard fight for you and your boys, no doubt!

      over 8 years ago
    • pallwitz's Avatar

      Thank you Moonflay for information on those sites. I will make sure to look at them tonight. We tried to get him into remission and/or free of the disease, but that did not work. His lymphoma grows so fast. Once the drugs get it out of one area it goes into another area of the body. So he was never eligible for a stem cell transplant. He does not get sick from the treatments. He actually does really well and feels great after the treatments. It is when the lymphoma comes back that he feels so sick. All his feeling bad comes from the lymphoma. He is doing better today and has a more positive attitude, which is great. Thank you all again for your encouraging words!

      over 8 years ago

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