• judsonlee's Avatar

    judsonlee wrote on po18guy's wall

    Hi Jim,

    I've read a lot of your posts on different forums and was just curious if you know of any other survivors of PTCL-NOS? I would love to pick your brain about this disease if you have the time. Thanks!

    2 Comments
    • po18guy's Avatar
      po18guy

      Sure. Are you a patient or caregiver?

      9 months ago
    • judsonlee's Avatar
      judsonlee

      I'm a patient. I was diagnosed in end of February and have been going through EPOCH chemo. I just did my fifth round today. So far I'm responding well to the treatment. I had a PET scan on Tuesday and today my oncologist (Dr. Steven Horowitz) told me that there is no evidence of lymphoma! One small victory. I'll take what I can get... The plan as of now is to do the final (6th) round and then they want me to get an allogeneic sct, because as I understand it this type of cancer has a high rate of relapse.

      A couple of the questions I have are:
      1) Do you know of any survivor groups on the internet for PTCL-NOS?

      2) Do you believe in your experience the allo sct is the best path for curative intent?

      3) What were some of the struggles with your SCT while going through treatment and then after treatment?

      BTW- I watched your video on Youtube about keeping hope and I want to say that it planted a seed a little seed in me and I'm forever grateful for that message. I truly believe in the power of positivity and I hope to get through this and pay it forward in a similar way.

      9 months ago
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    judsonlee wrote on Laurasalzy's wall

    Hi Laura,

    I was diagnosed with PTCL-NOS in early March and have been going through treatment since. I'd love to speak with you about your journey if you have time! Congrats by the way, you are a strong woman, and its admirable that you stay in touch on the forums offering support.

    -Justin

    2 Comments
    • Laurasalzy's Avatar
      Laurasalzy

      Hi Justin, sure, I’ll be happy to speak with you. It’s very important that you stay positive. You can beat it!

      Laura

      9 months ago
    • judsonlee's Avatar
      judsonlee

      Thanks Laura. I'm trying my best to stay positive. I have been learning about meditation/ tai chi, etc... Its been a little more difficult to get exercise now that I'm locked nside due to COVID. But I'm doing my best! I'm sure when you went through your journey there were difficult times, what were some of the things you did to help yourself cope?

      9 months ago
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