neupogen pain and discharge

    • Anonymous
      November 7, 2009 at 9:56 am

      today’s the discharge day ! we’re just having our morning coffee, waiting for the doctor(s) to come and tell us the counts are good and we can go..

      we know the counts are good, as the nurse poked her head in to say the white blood cell count is 2.3 today, up from 1.3 yesterday, and .7 the day before.

      but this white blood cell rise came at a cost : incredible bone pains alice suffered through for 2 days because of neupogen shots, the growth factor which stimulates the stem cells and growth of white blood cells from within the bone marrow. alice woke up at 3am yesterday with excruciating pains in her whole body – and particularly where there is more bone : the skull and lower back. the nurse paged the on call doctor and alice was given a good dose of dilaudid – which absorbed some of the pain, but not all – needless to say, there was no dilaudid dance… we got a bit of dilaudid dance later yesterday afternoon, when the dose was increased enough (to 2mg) so that it absorbed all the pain (finally !) and then some (that’s where the dancing came in… i was so relieved she could finally relax)

      now the reason why there is so much bone pain is that the cells are being produced in high numbers in the bone marrow, but can’t all get out fast enough – pushing on the bone – as if no matter the production they have to get out into the blood in single file

      it was so painful alice actually refused her neupogen shot yesterday morning (she’d had 4 days of morning shots – and the pain got worse each day) – and i have to admit, if she hadn’t refused, i would have… clearly her numbers were going up and if it was just a question of a few days before reaching higher numbers, it would not have been worth that horrendous pain

      so alice is feeling much better now – still some pain there, but it comes at a 4-5, down from acute 10

      besides the numbers really did shoot up – so it’s all good

      otherwise, she’s been feeling great : every day i see her walking improving – faster, stronger, and her feet have turned out when she walks, the way she used to walk naturally – i haven’t seen that in such a long time that i’d forgotten about it

      she’s getting ready to go for a walk around the ward – i told her i’d join her in a minute while i finish this.. i know i’ll find her talking to someone, either patient or staff – she’s like the mayor here, knows everyone 🙂

      we have met wonderful people here and i look forward to seeing these new friends outside of any realm of hospital or illness

      alice has a final appointment with dr burt on monday, and we’re going back to S.F. on tuesday !!

      halleluiah !!!

    • Anonymous
      November 7, 2009 at 11:13 am

      [QUOTE=alice]halleluiah !!![/QUOTE]

      [COLOR=”Red”][B]AMEN !![/B][/COLOR] 🙂

    • Anonymous
      November 7, 2009 at 11:46 am

      Great news! Thank you so much for letting us in on the journey and I look forward to continued good news! Have a safe trip back to S.F.

    • Anonymous
      November 7, 2009 at 2:33 pm

      So glad Alice’s WBC is coming up.
      But more important, is what they watch for,
      is ABSOLUTE NEUTROPHILS…it needs to reach 1500 to be okay.

      SO sorry Alice was having that pain, but it is part of the process, and, unfortunately, to be expected.
      But, Dilaudid is a WONDERFUL pain reliever, and glad they raised the dose.

      This is important, as we need Dr. Burt to do his report to the Neuro-Society.
      When my neuro tried to pull up his report on the stem cell program with CIDP patients, Dr. Burt has NOT WRITTEN ANYTHING UP ON THIS YET.
      I am hoping he does this soon–it needs to get to the neuro society so that it is dicussed, pros and cons, and gets accepted as a normal protocal of treatment for CIDP.
      I am dieing, and could not afford to pay out of pocket, to go through their program, ($100,000.00). I just had my worst muscle spasm/cotracture attack of all, and my docs have increased my anti-spasmodic meds.
      And worse of all, my monthly labs came back from 5 days ago, and they are the worst yet– my WBC is now down to 2.2, and my absolute neutrophils are down to 926. They will be lowering my next dose of Cytoxan. They are afraid from being on Cytoxan for so long, (over 2 1/2 years), that it eventually will destroy my bone marrow–and I can die from that. But I have no choice–if I don’t take the Cytoxan, the CIDP speeds up and I will die from that anyways. So, I told them I would rather stay on the Cytoxan.
      I am hoping it will make it as a normal protocol of treatment before my time is up. If it is a normal protocol of treatment, the insurance companies then
      HAVE to pay for the treatment, and I hope I can make it to that point, as I definitely have nothing else to try BUT this program.

      So, when you have your appointment with Dr. Burt on Monday, could you PLEASE, PLEASE, PLEASE, for me, ask him when he will be writing up the research done, and presenting it to the Neurological Community. Tell him my predicament, and that I am waiting for this to happen. My neuro, which is head of Neurology at my local Medical Center, watches for his research
      write-up on the whole program, with the good and bad, the successes and the ones that it didn’t help—but NOTHING has been written up yet.

      I hope Alice continues on this journey so well, as it seems to be working so well for her!!! And please take care of yourself, as the caregiver.
      I am SO HAPPY this is going to well.

      All my best to you both,
      Big hugs,
      Ken, (and Frank)

    • November 8, 2009 at 3:22 am

      I am overjoyed to hear such good news! Wishing you a safe trip home!

    • Anonymous
      November 8, 2009 at 9:24 pm

      And it sure is seeming as if you WILL WIN!
      Thinking right helps ‘make it so’!
      Hugs and hope Always!

    • Anonymous
      November 9, 2009 at 6:06 pm

      so it’s been wonderful being out of the hospital (since saturday)– but tomorrow i get to fly home to california. i can barely stand it i’m so happy…

      i’m off all my meds and have not felt better since being sick.

      all numbness is gone. i’m walking normally. i simply feel great.

      as always, thanks for all your positive thoughts and support.

      more later–

    • Anonymous
      November 9, 2009 at 6:17 pm


      Ryan & I are so excited for you. we are wishing you a safe trip home and plz keep us posted on your progress going forward. This has been such a journey. I feel like we went through it too. You have been so awesome sharing your story with all of us and what a story it is. Ryan is finally going to get cytoxin and he couldn’t be happier. I am so hoping that your treatment will come available soon for the rest of the people with CIDP. It seems to have been your cure.

      Rhonda & Ryan

    • Anonymous
      November 9, 2009 at 8:19 pm

      Alice, my thoughts and prayers are with you. I’m so glad you are improving.
      Ms. Judy:)

    • Anonymous
      November 9, 2009 at 8:35 pm

      And then some!!!!!!!!!!!!!!!!!!!!!!!
      I’m glad that when you read this? YOU WILL BE HOME!
      Always better than elsewhere!
      Hugs and HOPE! TRUE HOPE! Always!

    • Anonymous
      November 14, 2009 at 4:25 am

      Hi again Alice, Youve touched all our hearts with your experimental journey. We have all travelled with u on this and I for one would love to give it a go. Does Dr Burt know if its available in Australia. I cant seem to find anything on the net.Take care Cheers Jet D

    • Anonymous
      November 15, 2009 at 8:13 pm

      The good bad and ugly or superlative will do?
      This seems almost anticlimatic, but….to me at least it’s the most important part.
      IF some parts are working better good! Let us know.
      IF some parts aren’t working better? Let us know.
      Think of it this way…between us all? There is a whole MINDTRUST of knowledges that haven’t been ‘mined’ yet? And there mite be one quirky ‘thing’, or more? That might help.
      USE US! As we want to help you, which in the long run could help US?
      Simple really.
      But if too much is going on too quickly, I understand. Those dratted ups-and-downs are something we all do not look forward to? But at the same time, we can learn from them.
      Please keep us up to date as to how things are going. Hope always in the meantime!