back for the big blast

    • Anonymous
      October 21, 2009 at 8:37 pm

      (sophie 🙂

      we’re back in chicago, back at northwestern, for the big chemo this time –

      normally alice’s chemo was to start yesterday, but as her hemoglobin count was low (8.4), she got 2 units of blood and started the treatment today.

      so alice’s big transplantation date is OCT 28th, that’s the big day, the day referred to as “DAY 0” – so today is “day -7” – and it started with a dose of Rituxan..

      this is what the next week will look like :

      today (-7) Rituxan (500 mg)

      day -6 ATG (31 mg)

      -5 ATG (63 mg) and Cytoxan (3180 mg)

      -4 ATG (63 mg) and Cytoxan (3180 mg)

      -3 ATG (63 mg) and Cytoxan (3180 mg)

      -2 ATG (63 mg) and Cytoxan (3180 mg)

      -1 nothing

      0 stem cells

      +1 Rituxan (500 mg) (and that’ll be it for the chemo)

      +2, +3, etc… it’s all healing and rebuilding a strong immune system from here…

      we hadn’t understood that alice would get rituxan, and asked the nurse to double check the prescription… so the doctor came in and explained that the chemo starts off with this med, to kill off B Cells (the white blood cells that produce the antibodies) and ends with it too.

      so alice quickly went to her keyboard to do some research on it and found out interesting facts like it’s synthesized from chinese hamsters… of course there was a big list of possible side effects, but now that the last drop of rituxan just went through, i can tell you the only side effects she had was itching on her toes, and then on her head, and a slight sore throat feeling – they slowed the IV down and the itching subsided…

      so next step is ATG – this one targets the T cells (made from rabbits this time), then back to cytoxan on friday

      i’ll write more, just need to run down to get alice a little something to eat..

      thank you for your messages of encouragement – i just read an article on how important it is to have support in the healing process which sounds obvious, but apparently one study showed that it can be just as hurtful to not be surrounded by a support structure as it is to smoke !

      we’ll write again soon…

      ps. thank you to the chinese hamsters and rabbits who are contributing to alice’s recovery

    • Anonymous
      October 21, 2009 at 8:46 pm

      Thanks for the update Sophie. They sure are going to be blasting away with the big guns of chemo therapy. I’m marking October 28th on my calendar. Lots of love and positive energy being sent to Alice for her treatments, and to you for being such an important part of the whole process.

    • Anonymous
      October 21, 2009 at 9:25 pm

      Good luck with everything! Please keep us posted! You are all in my prayers!

    • Anonymous
      October 21, 2009 at 9:47 pm

      as rite now, my legs or toes really don’t work too well. AH! The JOYS of CIDP.
      Thanks, Sophie, for the updates abbout the chemo’s side effects, and they sound pretty ‘normal’ for what lots of chemo patients go thru…that they are watching the blood counts like hawks is super good thing too! I’ve served time in a hospital ‘infusion’ ward on the cancer floor and got to meet some truly brave and wonderful folks there….especially a couple were there for me when I’d had Breast Cancer.
      Tho in my humble estimation? Alice and YOU are both lots braver, as you are on a somewhat ‘unknown’ path for treatments.
      I suspect that Alice is sort of feeling as if she’s been going thru the food processor rite about now, and you thru the ‘super chopper’ -it’s often harder to be the ‘hand holder and supporter’ in these situations as you are sort of ‘powerless’?
      I Believe that you both are dedicated to each other, and that what strength you have can and will be shared freely as possible. Don’t lose that! But, please now? Is a critical time for YOU Sophie to take care of yourself as well. As WHO knows? What shape Alice will be in for the short term….And ‘short’ often has a somewhat ‘open-ended’definition for the ‘medicos’.
      Keep heart and hope for a good long time! Often, it’s what we have left for the long run.

    • October 21, 2009 at 11:08 pm

      Sophie we all know that Alice is grateful for all your good work and so are the rest of us. We need the encouragement and the knowledge that you are sharing in this undertaking. I can feel the hurricane of positive energy, support, and prayers that are heading your way. I know that you and Alice will be safe in the eye of the hurricane.
      I was especially touched when you showed reverence for the little hamsters and rabbits. Alice and many others will soon be living an abundant life because of those little creatures.

    • October 22, 2009 at 9:16 am

      You need to tell Alice to look up a memeber by the name of Norb. He has some hilarious pictures of himself when he was getting Rituxan. I am not going to tell you and spoil it. BTW, I have ALWAYS told the doc and neuro I tink the t-cells are the answer as wel as the thymus gland. Somewhere there lies the answer. If we could just get that gland to throw out the bad t-cell receptors!
      Dawn Kevies mom
      BTW, did you get a chance to check out the popcorn at Garrets on Mich Ave? Trust me ists worth it!! Especially cheese!

    • Anonymous
      October 22, 2009 at 10:49 am

      [FONT=”Book Antiqua”][COLOR=”Sienna”]I have nothing to add to what has already been said.

      I’m overwhelmed by the courage and grit both you ladies have shown and are showing. Truly overwhelmed[/COLOR].[/FONT]

    • Anonymous
      October 22, 2009 at 2:30 pm

      Thank you Sophie…for all that you are doing ! Alice means so much to so many of us…

      blessings …….

    • Anonymous
      October 22, 2009 at 2:32 pm

      God Bless. Alice will do well. Her will is half the battle she is about to face.

    • Anonymous
      October 22, 2009 at 9:28 pm

      Alice, hang in there. My thoughts and prayers are with you. I know I’m only
      a jr. member and met you about 2 mths ago, but I read your threads and I
      want you to know how much of an inspiration you both have been. Thoughts
      and prayers are sent your way.

      Ms. Judy:eek:

    • Anonymous
      October 22, 2009 at 9:56 pm

      as always i appreciate your good wishes, thoughts and concern…
      and ms. judy, it doesn’t matter when you join– our common thread trumps seniority 😉

      sophie is preparing a new entry with our latest updates… her brain can process the data better than mine during this time, as you can well imagine. plus she is tirelessly and inexpressibly good to me…:rolleyes:

      more soon– hope you are all doing well.