Info on a new clinical trial for lymphoma

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  • MandaJarvis11
    MandaJarvis11 Member Posts: 37
    #22
    lianadw said:

    Wishing you the best today!

    Hope you get speedy and happy results! Liana

    Thank you

    I just wish I could find out everything today rather than wait all weekend. But I picked up more serving shifts to keep busy! My boyfriend is really sworn out from me I think. I feel bad but i live with him and its hard to put on a happy face when I'm in discomfort and worrying. You guys are very helpful though and appreciate everything!

  • dusterbin
    dusterbin Member Posts: 1
    #23
    Diagnosed

     

    Hi, new to the site. I was diagnosed yesterday with Chronic Lymphatic Leukemia. I'm still processing this. It's been a long 7 month journey with many doctors to find out what was wrong with me. I cry for the time lost. However, have to move on now. Oncologist appointment is on the 26th. Can anyone just share what that appointment might entail? I would like to be prepared as much as I can. I'm researching and looking. I appreciate your encouragement that is one cancer that can be treated and cured.

     

    Thanks so much for all your encouragement and great progress.

    Manda...hang in there girl. Praying for "good results" and inner peace.

    Gwen

  • lianadw
    lianadw Member Posts: 72
    #24
    dusterbin said:

    Diagnosed

     

    Hi, new to the site. I was diagnosed yesterday with Chronic Lymphatic Leukemia. I'm still processing this. It's been a long 7 month journey with many doctors to find out what was wrong with me. I cry for the time lost. However, have to move on now. Oncologist appointment is on the 26th. Can anyone just share what that appointment might entail? I would like to be prepared as much as I can. I'm researching and looking. I appreciate your encouragement that is one cancer that can be treated and cured.

     

    Thanks so much for all your encouragement and great progress.

    Manda...hang in there girl. Praying for "good results" and inner peace.

    Gwen

    Welcome to this site

    Hi Gwen,

    Welcome to this site! I've found this to be a great resource with a wealth of support and knowledge from all the members here. I'm sorry to hear of your diagnosis, but I know it must be a relief also to know what's going on after 7 months of testing. My first visit with my oncologist was mostly him giving me a lot of info about the different types of cancers and how they get treated and how the lymphoma I have would be treated. He gave me an outline of the coming months and also additional tests he wanted. I can't remember now what questions I came with, other than can I go back to work, which he recommended against. He wanted me to focus on my health. I feel I could have worked on a very part time basis, my energy has been mostly good, but I've followed his advise, and my energy is probably good in part for not having to deal with the stressors of work. And now my treatment is intensifying, so I really can't be working.

    Keep us posted on what treatment you will receive and how you fisrt visit goes.

    Warmly,

    Liana

  • illead
    illead Member Posts: 884 Member
    #25
    Yes......welcome

    Hi Gwen,

         I agree with Liana.  Your oncologist will be telling you about what your treatments will be.  We have all been there so we understand.  Cancer always happened to others until it struck us.  It's hard to wrap your head around, but we become experts fast.  Bill has Mantle Cell lymphoma and is now in remission a year.  We were very fortunate, he went from near death to optimum feeling in about 5 months.  We are able to go on with life and put the cancer on the back burner (way back) for now.  We know it is an ominous feeling but you will do fine.  There is so much headway and more on the horizen with lymphoma and leukemia so there is much to be optimistic about..Hope you have a good cancer center,  oncology nurses are terrific, you should be in very good hands.  Someone is always here to listen, so share your thoughts whenever you want.  Let us know how things are going if you want.  Our thoughts, Bill and Becky

    Manda,

         Thinking of you today, good thing you are busy this weekend.

  • po18guy
    po18guy Member Posts: 1,508 Member
    #26
    dusterbin said:

    Diagnosed

     

    Hi, new to the site. I was diagnosed yesterday with Chronic Lymphatic Leukemia. I'm still processing this. It's been a long 7 month journey with many doctors to find out what was wrong with me. I cry for the time lost. However, have to move on now. Oncologist appointment is on the 26th. Can anyone just share what that appointment might entail? I would like to be prepared as much as I can. I'm researching and looking. I appreciate your encouragement that is one cancer that can be treated and cured.

     

    Thanks so much for all your encouragement and great progress.

    Manda...hang in there girl. Praying for "good results" and inner peace.

    Gwen

    Chronic means "time"

    Gwen, the name tells a lot. 'Chronic" means that it is a disease that may not be curable, but one that can be controlled, like many other illnesses. Since it is a blood-borne cancer, it is very treatable. Here is a link to an information sheet regarding CLL: http://www.lymphoma.org/atf/cf/{0363cdd6-51b5-427b-be48-e6af871acec9}/CLL2010.PDF

  • po18guy
    po18guy Member Posts: 1,508 Member
    #27
    HDAC Inhibitors provide hope

    I had a T-Cell Lymphoma that was widespread, and so could not be irradiated. It was highly resistant to chemotherapy, defeating all eight drugs that were used against it. It relaped immediately after chemo, which lowered my prognosis from poor to very poor. My only choice was between no treatment at all, or one last massive infusion and palliateive care > hospice. Providentially, at that precise moment, a clinical trial of a new HDAC Inhibitor opened up. HDAC Inhibitors are not chemotherapy, but are considered a biological drug. Thus, their toxicity is lower. I entered the trial of Romidepsin (Istodax). It put my lymphoma back in full response. Once the trial ended, I remained in the long-term study of the drug, where I am today. At the end of this month, I will have been receiving the HDAC Inhibitor Istodax for four years. It is the only thing that saved my life after the immediate relapse, and is the only reason that I am here today, as there is no match for a stem cell transplant. It provides great hope for many who have relapsed T-Cell Lymphomas - known for a poor prognosis and the  frequency of relapse.  

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