Cytoxan Follow Up – 8 Days Later

    • davidinsd
      September 2, 2010 at 7:33 pm

      Had my first Cytoxan treatment last Thursday. Day 1 and 2 no changes. Day 3 slight headache, upset stomach and lower intestinal distress. Day 4 Better but not much. Day 5 Good day but very tired at night. Day 6 Good. Day 7 and 8 Very good with energy and brighter outlook. Hope it keeps up. I will be getting one treatment a month for 6 months while maintaining bi-weekly IVIG.

      Hopeful!

    • Anonymous
      September 3, 2010 at 8:15 am

      davidinsd,

      Thank you for providing the forum your experieces with Cytoxan. I might be having that added and really appreciate the feedback – please keep it coming!

      Thanks!!!!

    • Anonymous
      September 17, 2010 at 12:11 am

      I start cytoxan on Monday. We are combining it with PE and steroids. Weekly PE and iv prednasone and monthly cytoxan. 😀 I want nothing more than too slow this down. Wish everyone the best

    • Anonymous
      September 22, 2010 at 11:48 am

      While I was at my worst I had cytoxan infusions once a month for 9 months. I was also having solumedrol infusions every week & IVIG in the beginning. The cytoxan arrested my CIDP somewhere around the 5th month & then the healing began. But it is a slow process to heal, allow up to two years, as that is how long nerves can heal after they have been damaged. If you have any axonal damage, those nerves most likely won’t heal. I have been off of all treatments now since 2003, when I had my last cytoxan treatment.

    • Anonymous
      September 22, 2010 at 1:50 pm

      [QUOTE=Pam H]While I was at my worst I had cytoxan infusions once a month for 9 months. I was also having solumedrol infusions every week & IVIG in the beginning. The cytoxan arrested my CIDP somewhere around the 5th month & then the healing began. But it is a slow process to heal, allow up to two years, as that is how long nerves can heal after they have been damaged. If you have any axonal damage, those nerves most likely won’t heal. I have been off of all treatments now since 2003, when I had my last cytoxan treatment.[/QUOTE]

      Pam, were you left with any axonal damage from your CIDP? What is your daily status like today? How do you function, do you need assistive devices at all?
      Do you still get CIDP type fatigue?

      Thanks,
      J.

    • Anonymous
      September 22, 2010 at 8:04 pm

      My damage is severe. Our hope is too stop the progression.

    • davidinsd
      September 23, 2010 at 1:03 am

      Hi everyone, I have my 2nd cytoxan tomorrow. Thanks for your comments. I tell you, I am even more hopeful than before. Pam, my feet have been numb for the past 8 years and I think you are right about them not healing but I can live with that if I can get past the fatigue I will consider the treatment a complete success!!

      I will keep you all updated with my experience and Thank You All!!!

      David

    • Anonymous
      September 23, 2010 at 6:01 am

      [QUOTE=davidinsd]Hi everyone, I have my 2nd cytoxan tomorrow. Thanks for your comments. I tell you, I am even more hopeful than before. Pam, my feet have been numb for the past 8 years and I think you are right about them not healing but I can live with that if I can get past the fatigue I will consider the treatment a complete success!!

      I will keep you all updated with my experience and Thank You All!!!

      David[/QUOTE]

      David, has the fatigue improved already?

    • Anonymous
      October 4, 2010 at 12:07 pm

      How are your treatments going? Do you feel any improvements at all?
      Are you on anything besides the chemo.