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Starting mobilization for Dr. Burt study on Monday

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    #31
    Carole,

    Thank you so much for keeping us updated. I have failed so many dmd's at this point. Ty was the only thing that got me stable but I'm jcv+ with a very high titre. Anyway, I started rituximab in August and my pesky immune system fought back right at the six month mark. I'm waiting for my MRI results, but I'm pretty certain I am starting a flare.

    May I ask how long you had to be in Chicago for the two parts of the treatment? My biggest concern about applying is having to be away from my daughter for long stretches of time. She has special needs and anxiety and me being away for more than a week just would not work for her :-(.

    I pray that you keep doing well!! Thank you so much for keeping us updated!!!
    Melissa Goerke
    [I]DX 7/2/10, Copaxone then Avonex, started Ty 9/13/11, JCV+ ended Ty 9/13, started Gilenya 12/13 Blood Pressure skyrocketed, started Tecifdera 4/5/14 - fatigue beyond bearable and symptoms became worse. Rituximab 8/8/14.....waiting for the miracle. I WANT MY TYSABRI BACK!!!

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      #32
      Hi Melissa

      The way it works is that you first go for what is called 'mobilization' for about 12 days and then you go back for another 2 to 2 1/2 weeks inpatient for the rest of the treatment (chemo, stem cell reinfusion and then recovery). Sometimes you can do this consecutively but, for me, I did mobilization in late July and then returned in early September for the actual hospitalization part.

      The mobilization phase is 1 day inpatient and the rest is outpatient, but you have to stay in Chicago. If you could somehow manage to get this done when your child is out of school (say, summertime) she could accompany you and stay with you for most of this. I know this can be expensive though.

      There is really no getting around the 2 to 2 1/2 weeks inpatient time unfortunately. I have a child who also suffers from anxiety (but it otherwise ok) and it was tricky but we Skyped every night which helped a lot. It's very hard, especially when you have children, but I really wanted to do it so I could be more involved in their lives. If you're still interested in this, please check out the Facebook page dedicated to Dr. Burt's study (Dr. Richard K. Burt Stem Cell Study Chicago). It's run by former patients and is full of great information and a lot of support.

      Best of luck with everything.

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        #33
        Hi Carole
        How are you getting on now?
        I wondered where you were in disease process when you had the hsct as in RRMS spms ppms
        It's great there's people like you doing these treatments that although risky stand the chance of stopping progression for many others!

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          #34
          Hi Krisp!

          I'm doing pretty well, thanks for asking! I am RRMS.

          I have to say the first six months post HSCT were a bit rough, but manageable. My legs felt so achy every day (this improved with lots of movement) and I was often very tired. I am now 8 months post HSCT and am doing very well. The morning achiness in the legs has really diminished and even my 'cog fog' has improved a bit. I recently traveled with my family to Disneyworld in Orlando. The temperatures were in the high 80s/low 90s.

          Normally, (well, the new 'MS normal') my legs would be horrible with numbness/spasticity. Also, hot, humid weather really cranked up my saddle anesthesia.' For the first time in several years, this was not the case. Additionally, we walked probably 3-4 miles daily through the parks, and I was ok! Yes, I was achy by the end of each day, but so was everyone else in the family

          I am very glad I had HSCT and am so so fortunate that I've seen some real improvement. I head back to Chicago in September and am hoping for what I encountered at the 6 month follow up: no new or enhancing lesions!

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            #35
            So happy to read your post, CaroleK. I am reading on this site, daily, because it is successes like yours that keeps my spirits up. Good luck Stay in touch.

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              #36
              1 year update

              Hello everybody: Just wanted to post a quick update. I went to Chicago earlier this month for my one-year follow up with Dr. Burt and the study's neurologist. I'm happy to report that my MRIs showed no new or enhancing lesions and one lesion in my spine has also decreased in size.

              Overall, I feel good. I've definitely noticed some improvements in terms of less fatigue as well with improvement with saddle anesthesia and heat sensitivity. My legs also feel stronger in general. I still have issues with numbness and spasticity in my legs (especially the right one) which may never resolve but I'm happy that, so far, the HSCT seems to have halted the progression of my MS

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                #37
                Carole, thanks for updating us. It's good to hear that you are doing well.

                AMJ

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