follicular lymphoma

smartins
smartins Member Posts: 1
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hello,

I am 26 yrs old and was dignosed Sept 04. I just finished my 2st treatment which was 5 rounds of CVP woth Rituxan. My 1st scan showed that the lymphnodes decreased to half their size which gave me alot of hope but the 2nd scan showed no change. THe Dr. told me that it could be scar tissue left over and that I would have to do a gallium scan to see. He also suggested I do an HLA test just in case I would have to conside a BMT if indeed it is not scar tissue in the abdomen. I am really afraid right now but I do try not to think about it until I really have to... I do not have siblings which is my big fear b/c I would need a donor BMT. Can anyone tell me if they have experienced something like this... I guess my real question is has anyone here had a donor transplant? Thanks ...

Comments

  • sweetda
    sweetda Member Posts: 6
    #2
    Hello,
    I just wanted to say hello and I'm sorry to hear about what you are going through. I was diagnosed a year ago with small cell follicular low grade stage 4 non hodgkins lymphoma. My dr and I haven't even discussed bone marrow transplant. I did the 6 months of chemo and I am currently taking Rituxan for this year and next year, every 6 months. Has your dr. discussed other treatments before the transplant? Can you explain a little more on your diagnosis? This is a nice discussion board and also the lymphoma and luekemia society discussion boards. I'm always here to talk, so please dont hesitate to write.
    God bless and please take care. Let me know how you are doing.
    Deb
  • bfluhr
    bfluhr Member Posts: 1
    #3
    Hi,

    I was also disagnosed in Sept 0f 04. I am 35 married with two beautifull boys 2 and 5 years old. Nothing scares me more than this disease, but you learn to live with it. That is the key that you never can forget that you have a right to live and enjoy life. Don't let this disease destroy your will. It is not easy for me to say this, as there are times when it hurts and it is scary, but we have to pull through. Now, onto your question..

    I have been through CHOPr and have recieved a parital remission at approximately 5% cancer still present. That is a big accomplishment as I was 100% impacted in my bone marrow on diagnosis. Scary. Anyway, I was just screened for BMT and my doctor is going to extract my stem cells and freeze them for later. I had a doctor at Stanford University who said he wouldn't bother, and just wait until (if) I needed them. His rationale was purely a storage issue as he said that if he collected stem cells from all his patients, he wouldn't have room to store them. Anyway, thankfully, my proactive doctor has my best interest in mind. Bottomline, this is your life. You still control it. So take the HLA test, and do everything you can to stay ahead of the game.

    In terms of the prospect of having a transplant, it scares me to no end. The thought of missing an opportunity to save my life, scares me more.

    I hope this helps you, as I reread this and I think it may help me more. I hope I don't need to go back and read this someday to encourage myself.

    Truly, all my best,

    Brian

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