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  1. Hi there, I wanted to say hello as the mom of a...

    Hi there,
    I wanted to say hello as the mom of a son with Hodgkin Lymphoma, especially since there are very few people here dealing with HL. Although my son is older (24 when diagnosed) he is the...
  2. I have all my fingers and a few other appendages...

    I have all my fingers and a few other appendages crossed that you do *not* have cancer! And I feel I must chime in as I 100% agree with poguy about needle biopsies. Seriously, virtually worthless...
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    I'm on the same page with DecOder here. What are...

    I'm on the same page with DecOder here. What are his cell counts? Are they low meaning he IS at high risk for infection? Not all chemo gives you low cell counts and everyone reacts differently. ...
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    So very sad. I remember reading her last post...

    So very sad. I remember reading her last post about her sister's visit and it was hopeful. Although I really hated to hear this, thank you for letting us know, Kermica.
  5. Hi Hodgepodge, As one of the few Hodgkin folks...

    Hi Hodgepodge,

    As one of the few Hodgkin folks here (my son) I wanted to connect. I sincerely hope you received good news. You should know the results of a CT or PET scan within 24 hours - they...
  6. Thread: Immunotherapy!

    by VMarie
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    Thank you, Kermica! I see you have an upcoming...

    Thank you, Kermica! I see you have an upcoming surgery. Sending you all good thoughts!
  7. Thread: Immunotherapy!

    by VMarie
    Replies
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    Thank you, Alison! How have you been feeling?...

    Thank you, Alison! How have you been feeling? Are you doing well, I hope?
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    Ack! Very sorry to hear this new development...

    Ack! Very sorry to hear this new development with the GVHD, Po! Sending the best thoughts for relief! Are you still able to travel with Dr. Shustov when he gives his wonderful T-Cell forums??
  9. Thread: Immunotherapy!

    by VMarie
    Replies
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    2,599

    Thank you, John! You are doing well, I hope? ...

    Thank you, John! You are doing well, I hope?

    QUOTE=johnr;365929]Hi, that all sounds really positive and does offer hope for the future especially after the long rough ride he has endured, fingers...
  10. Thread: Immunotherapy!

    by VMarie
    Replies
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    2,599

    Immunotherapy!

    Greetings,

    I wanted to post an update regarding my son's HL journey for those of you who remember us. :-) After a relapse while on Brentuximab for maintenance after his auto stem cell transplant,...
  11. Fabulous that BV worked for you!

    Fabulous that BV worked for you!
  12. Poll/Questions for all those who have been through allo transplant

    Greetings to all,

    Just trying to gather info for Plan B. If you've been through an allo:
    1) What type of donor?
    2) Did you have a RIC-allo? What was your conditioning chemo? Particulary...
  13. GREAT news that you are still clear! I'm sorry...

    GREAT news that you are still clear! I'm sorry about the ongoing GVHD and steroids. Remind me - Did Brentuximab get you to CR after your allo?
  14. Thank you for your post, Alison! You are still...

    Thank you for your post, Alison! You are still clear? How is the GVHD treating you??
  15. Thank you for the update, Chef! I know you've...

    Thank you for the update, Chef! I know you've had a hard go of it and you shared that bizarre "misdiagnosis" as my son did. Did Brentuximab (Adcetris) get you to a CR before your allo? It was...
  16. Hi Deb, Good to hear from you! Thank you for...

    Hi Deb,

    Good to hear from you! Thank you for your good thoughts. Unfortunately, we don't have a choice on where to go for treatment as we are in a closed system (Kasier). We've had several...
  17. Thanks, Chef! You are still doing well after...

    Thanks, Chef! You are still doing well after your allo? Did you have much issue with GVHD? Allo may be in my son's future.
  18. Thank you, Kermica!

    Thank you, Kermica!
  19. Hi Jim, Thanks for your response! Dr. O'Connor...

    Hi Jim,
    Thanks for your response! Dr. O'Connor says BVB has the best chance of a CR if you want to go to allo. Craig Moskowitz says chemo actually works better after checkpoint inhibitors. There...
  20. Remember me? Saying hello and updating the Hodgkin's journey!

    Greetings!

    It's been quite awhile since I posted so I thought I would check in, see how everyone was doing, and give you an update on my son. I'm VERY HAPPY to see the supportive folks that...
  21. Hi Lauren, Congratulations on the negative...

    Hi Lauren,

    Congratulations on the negative PET! My advice would be to go for all six cycles, especially if you are not doing radiation (which I understand since it does increase risk of breast...
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    Here is the specific agenda:...

    Here is the specific agenda: http://www.lymphoma.org/site/pp.asp?c=bkLTKaOQLmK8E&b=9284029
    But even if they don't have a breakout session for your type, you can still ask your questions during Q&A!...
  23. Greetings zxl, There's no denying this is a...

    Greetings zxl,

    There's no denying this is a scary time for you and super difficult to tell the people you love about a cancer diagnosis. Do take heart that Hodgkin's is very curable with...
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    Updated info on Double-Hit Lymphoma!

    Patients with double-hit lymphoma a particularly aggressive lymphoma
    in which a patientís malignant cells show two mutated biomarkers, rather than oneó do not need stem cell transplant if they...
  25. Hi there, Sounds like you have a plan, are...

    Hi there,

    Sounds like you have a plan, are well informed and educated and well armed with what you need to know. I'm not sure anyone here can further elucidate the liquid biopsy findings. ALCL...
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