new diagnosis of large b cell

jlk24
jlk24 Member Posts: 6
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
my brother (age 36) was recently diagnosed with large b cell....aggressive....he had a tumor removed from his brain last week which the surgeon originally thought was benign....the pathology proved the mailignancy and therefore the diagnosis. This friday, he starts Ritux/CHOP combo and will take methatrexate thru a spinal tap to reach what is left in his head....need to hear from cancer survivors who can provide thoughts on this treatment and share personal experiences....he is being treated at Dana Farber in Boston, so we have comfort with that....what can I tell him as he enters this journey.

Comments

  • bmcelvein
    bmcelvein Member Posts: 2
    #2
    I was diagnosed with diffuse large b cell NHL in December 2003. I found the chemo treatments to be unpleasant - but not as bad as I had expected. I was able to work virtually full time throughout and had only a few limitations on my normal activities. More importantly, the treatments usually work - particularly with Rituxin. There was a recent study of younger (average age 48, I think) patients, with very good 5 year survival figures. The drug is too new to have any longer term survival numbers - but your brother and I have every reason to think they will be good. People beat this disease every day - I intend to be one of them.
  • kanrg
    kanrg Member Posts: 1
    #3
    I was diagnosed with Large B cell NHL in upper abdominal area in December 03, I have completed 8 CHOP/Rituxin treatments on May 21, 2004 but developed eye problems (drooping left eye with double vision). CT, PET, MRI scans showed original cancer site in remission. They have done the lumbar puncture and found increased white cells and immuno blasters indicative of cancer cells in my central nervous system. Received radiation therapy to both sides of my head and my eye definitely improved in opening and seeing more clearly. Another setback: my legs are giving out, fell 3 times, they hurt and are definitely numb. Needless to say, my oncologist stopped the radiation therapy and I have had two chemo treatments to my spinal fluid and another chemo treatment by arm (mexodraxate?)to help me get back on my feet. It has worked somewhat. I'm being evaluated for bone marrow transplant at Vanderbilt Medical Center-Nashville. The course of treatments has been alright. As with anyone else, I am just impatient. With family, faith and prayers, I know that I can make it. If anyone would like to email me , I will be glad to talk. Thanks. Kathy
  • divna
    divna Member Posts: 2
    #4
    kanrg said:

    I was diagnosed with Large B cell NHL in upper abdominal area in December 03, I have completed 8 CHOP/Rituxin treatments on May 21, 2004 but developed eye problems (drooping left eye with double vision). CT, PET, MRI scans showed original cancer site in remission. They have done the lumbar puncture and found increased white cells and immuno blasters indicative of cancer cells in my central nervous system. Received radiation therapy to both sides of my head and my eye definitely improved in opening and seeing more clearly. Another setback: my legs are giving out, fell 3 times, they hurt and are definitely numb. Needless to say, my oncologist stopped the radiation therapy and I have had two chemo treatments to my spinal fluid and another chemo treatment by arm (mexodraxate?)to help me get back on my feet. It has worked somewhat. I'm being evaluated for bone marrow transplant at Vanderbilt Medical Center-Nashville. The course of treatments has been alright. As with anyone else, I am just impatient. With family, faith and prayers, I know that I can make it. If anyone would like to email me , I will be glad to talk. Thanks. Kathy

    my mom was recently diagnoised with stage 4 large b cell and is undergoing rdhap chemo and rituxan. she is young 52 and we are all honetly terrified. although we remain positive it has been really hard, any words of advice would be appreciative. thanks everyone and god bless
  • CGayle
    CGayle Member Posts: 3
    #5
    divna said:

    my mom was recently diagnoised with stage 4 large b cell and is undergoing rdhap chemo and rituxan. she is young 52 and we are all honetly terrified. although we remain positive it has been really hard, any words of advice would be appreciative. thanks everyone and god bless

    Be there for your mom. Tell her it's not really as terrifying as one's mind creates. She can do it! We all made it ok and she will too !! Prayers.
  • jbutler76
    jbutler76 Member Posts: 7 Member
    edited August 2016 #6
    divna said:

    my mom was recently diagnoised with stage 4 large b cell and is undergoing rdhap chemo and rituxan. she is young 52 and we are all honetly terrified. although we remain positive it has been really hard, any words of advice would be appreciative. thanks everyone and god bless

    r-dhap...

    Hi divna, my mom just turned 58 and she's fighting DLBCL NHL ABC-type, stage IV. She did 2 R-CHOP that failed, 2 R-EPOCH that halted the disease but wasn't getting rid of it... She just got out of the hospital having completed her first R-DHAP. It is an awful regimen. My mom's Dr is just trying to get her to a stem cell transplant. We've had so much disappointment, but we are just trying to stay positive. I know where you are at and what you are feeling. It's a terrible place. I just wanted to let you know you are not alone. I will keep you and your mom in my prayers. 

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