cytoxan vs. cytoxan with stem cell transplant

    • Anonymous
      November 3, 2008 at 6:34 pm

      does anyone have any opinions about which is better?
      i am interested in cytoxan and am considering strongly the clinical trial at northwestern university (link below)

      is one better than the other?
      thanks, alice

    • November 3, 2008 at 7:02 pm

      A lady not far from us in Plainfield Illinois had a stemcell at northwestern some years ago. She was the first person w/cidp to have one. last I spoke to her, she was on Cell cept w/the transplant. You should go to her page and read her story. If you e-mail her and leave your #, she will call back. Her name is Jen, just google Jenn’s Story, try to search it here under search, I think Kelly may have posted the site for someone else at one time or another.
      Dawn Kevies mom

    • Anonymous
      November 3, 2008 at 7:04 pm

      i actually made contact with her! waiting for her to call me back now.

      i was just curious about how the two treatments compare…

      thanks again, alice

    • Anonymous
      November 4, 2008 at 11:38 am

      Hello Alice:

      I am also interested in high dose cytoxan. As I understand, doctors at Johns Hopkins discovered that bone marrow stem cells are protected from the toxic effects of cytoxan. Thus, they developed the Revimmune protocol with ultra high dose cytoxan that wipes out virtually your entire peripheral immune system. Then, since stem cells in the bone marrow are unharmed, they produce a new peripheral immune system in about 3 weeks with the help of Neupogen, a growth factor drug that promotes the bone marrow to produce white blood cells. The need for re-infusion of previously collected stem cells is avoided.

      There have been other studies where the immune system was wiped out using other chemotherapy protocols, or with radiation and chemo, where stem cell reinfusion would be needed because the stem cells were wiped out along with the circulating white blood cells.

      As to which is more effective, I don’t know. However, it seems if there is no stem cell re-infusion, there is less risk for re-introducing the disease into your reconstituting immune system.

    • Anonymous
      November 29, 2008 at 12:44 pm

      thank you for your very clear post. i have been thinking similarly re: your deduction that reinfusion escalates risk.

      do you know more? your understanding of it is impressive.

      i just completed my intake papers and cover letter to northwestern. i’m heading that direction…

      again, thank you.

    • Anonymous
      November 30, 2008 at 11:26 am

      Alice I hope you keep us posted. I am in between docs right now about Cytoxan and have to change insurers tomorrow so will have to start over. I was also recently diagnosed with lupus which has compicated matters a little and they may want to do Plaquenil and Methotrexate before Cytoxan. I am going to take a look at that clinical trial though….good luck and keep us posted.

    • Anonymous
      November 30, 2008 at 11:38 am

      sorry to hear about the lupus… like you need that on top of this. ugh.

      i posted a separate thread on my cover letter to NWU. i have their intake forms and request for a cover letter. in the letter, i address specific points they ask for.

      i’ll try to keep everyone updated but do feel free to contact privately for anything.


    • November 30, 2008 at 12:29 pm

      Hi Alice,
      When you get news about the trial and come to the Windy City, I would love to visit you. Good luck.
      Dawn Kevies mom

    • November 30, 2008 at 12:30 pm

      So sorry for the added news. Saying prayers to keep you strong.
      Dawn Kevies mom

    • Anonymous
      November 30, 2008 at 1:17 pm

      sounds great, i could use a friend there!
      also, keep your ears open for a possible sublet should i end up being accepted in the trial. i have been scanning craigslist– but until i know exactly when i am coming, i can’t arrange anything…

      but yes, i’d love to meet you dawn.

      my email is: [email][/email]

      please feel free to be in touch– i love reading your posts- you know so much more than i.