I Spoke at a Town Hall

    • Anonymous
      August 31, 2009 at 9:46 am

      Sophie and I went to a town hall meeting on health reform Saturday held by Congresswoman Jackie Speier. I had the opportunity to speak– and am hoping the video of the event will soon be available. In the meantime, here is an article about it where I am briefly referenced…

    • Anonymous
      August 31, 2009 at 12:57 pm

      [FONT=”Georgia”][SIZE=”3″][COLOR=”Sienna”]Good for you, Alice !! Bravo !! [/COLOR][/SIZE][/FONT]:)

    • Anonymous
      September 1, 2009 at 9:51 am

      Have you done Cytoxin at all? Just wondering, I know your getting ready to do the stem cell treatment. My son Ryan wants to do the cytoxin. PE isn’t really doing what we thought it was going to do. He got a lot of strength back at first and was able to walk with assistance at PT but now he is dragging again. He has been in a wheelchair for about 5 months now. But the dr said most of his strength came from the prednisone. but they are weaning him down off that now. Just was wondering your thoughts and experience with cytoxin if you tried it.

    • Anonymous
      September 1, 2009 at 10:04 am

      cytoxan is chemo– so when i go for my treatment, i will be given high dose cytoxan 1st, then be re-infused with my own stem cells. it is really the chemo part that is supposed to do the job of destroying the autoimmune cells, and good cells… the stem cell “rescue” as they call it, is to save your life from the high dose cytoxan they give you… there are some on this board– pam h. and jan b who have obtained remission from chemo alone– have a peak at their stories. what is special about my treatment is not the chemo part– its the stem cell re-infusion that quickly rebuilds a “healthy” immune system after its destruction from chemo…

      hope this helps–

    • Anonymous
      September 1, 2009 at 11:03 am

      Alice – I’m kind of confused. Are you getting a bone marrow transplant (as the article states) or a stem cell transplant? Apparently they are different. I Googled them, LOL.

      This is what I found:

      Stem cell transplantation usually refers to cases of transplantation in which the stem cells are collected from the peripheral blood by apheresis. When stem cells are collected by harvesting them from the bone marrow, it is called bone marrow transplantation. Collecting stem cells from the blood stream is less inconvenient for the donor than harvesting stem cells from bone marrow, which requires hospitalization and general anesthesia. Stem cell collection is done on an outpatient basis.


    • Anonymous
      September 1, 2009 at 11:27 am

      the names are often used interchangeably… BMT seems to be an older term. whether the stem cells are taken from the blood or marrow, it is the same– as they all originate from the marrow. they will have me take a growth factor to stimulate the stem cells from my marrow to go to my blood stream, where they will extract them through apheresis. the protocols vary but these are all pretty much a similar treatment. there is a difference between a full transplant and what i am having which is sometimes referred to as a mini-transplant. the main difference is total destruction of the bone marrow versus minimal destruction. because i don’t have cancer, their goal will be to destroy my immune system while sparing total destruction of my marrow.

      but whether the term BMT or stem cell transplant are used, they all do basically the same thing– high dose chemo with stem cell rescue.

      have a look at some of the links on my website where the doctor explains the procedure… i think he makes it clearer than i.

    • Anonymous
      September 1, 2009 at 9:02 pm

      I glad you got a chance to speak. I just hope they listened. I’m excited that you are getting your chance with the stem cell therapy. My hopes and prayers go with you. Keeps us informed of your progress.