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Starting mobilization for Dr. Burt study on Monday

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    Starting mobilization for Dr. Burt study on Monday

    Hi All: Just wanted to let those of you following stem cell treatment (HSCT in particular) that I've been accepted to the transplant arm of Dr. Burt's HSCT trail for MS and I begin the mobilization phase (chemo and growing new stem cells) this coming Monday. I have aggressive RRMS and have failed on 3 DMDs so this is the best option for me. I will try to give updates to this forum of my journey as best I can as we all need to be our own advocates in our life with MS and I want to share what I glean from all of this to all MS sufferers interested in other treatment options. Wish me luck!

    #2
    CaroleK, sending out very best wishes your way. I hope your results are beyond anything you expect. Althogh this is, based on what I know, a radical procedure=painful and risky. Thank you for taking on that risk and reporting results back to us.

    Best of luck for a good outcome.

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      #3
      Wishing you the best on your journey. Please keep us 'posted'. I hope that everything goes smoothly. Good luck

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        #4
        Thanks, MSW1963. It's certainly not as risky, mortality wise, as Tysabri, at least through Dr. Burt's study (he has a 0% mortality rate for autologous HSCT for MS) and I've been non-responsive to three DMDs at this point. I've done a ton of research, feel entirely confident with Dr. Burt and his protocol, and am willing to take the risk. There may be some pain, but probably more nausea (due to the chemo) as the stem cells aren't harvested through the bone but rather through the bloodstream. Anyway, will periodically update through here for those interested!

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          #5
          Best Wishes CaroleK! I hope you get great results with your stem cell treatment. We will all be thinking of you. I look forward to reading about your progress when you feel up to posting. It's always nice to read first hand accounts.

          Take care.

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            #6
            Thanks AMJ and JerryD!

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              #7
              Originally posted by CaroleK View Post
              I will try to give updates to this forum of my journey as best I can as we all need to be our own advocates in our life with MS and I want to share what I glean from all of this to all MS sufferers interested in other treatment options. Wish me luck!
              CaroleK - Wishing you all the best! We look forward to hearing from you when you're ready to share updates.

              Good luck!
              Bree

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                #8
                Good luck!

                CaroleK,

                Wishing you much success with this procedure. Sounds like you are as prepared as you can be and ready to go!

                Take care.
                Meet me in a land of hope and dreams. -Bruce Springsteen

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                  #9
                  quick update

                  Well I made it through mobilization (1 day of chemo plus self injected shots of Neupogen to grow new stem cells) and my 'harvest' (extracting the new stem cells I grew) went well. I needed to produce 2 million stem cells. I was able to grow 15.35 million! The bone pain from the Neupogen was grueling but, thankfully, short lived. I am home until 9/2 when I go back for the heavy duty chemo and the actual transplant (reinfusing the new stem cells extracted a few weeks ago). My hair is falling out, as is expected. Just have to get used to it! Otherwise, I feel pretty good. Will update again in September

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                    #10
                    Glad to hear you are doing well on this treatment.

                    Please keep us informed. So many people try SCT and then never get back to us.

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                      #11
                      Carole, I think that there are many people very interested in the Stem Cell treatment for MS. (including myself!)

                      I am anxiously waiting to see your future posts about the procedure.

                      I just had a good friend do Stem Cell for cancer, he's doing good - I for one am hoping that this type of treatment could be the "answer" for so many.

                      Thank you for dedicating yourself to doing this!

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                        #12
                        Thanks for the update, Carole. I am keeping you, and your medical team, in my prayers. Good luck

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                          #13
                          Thanks everyone. I promise to update, for better or for worse (but I'm hoping for better!). MSWorld was the first place I turned to when diagnosed and where I first heard about stem cell transplant. I know a lot of people who went through the treatment do post on Facebook, but not everyone is on Facebook. The more we can share our experiences in every forum, the better equipped we'll all be to manage our care/treatment.

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                            #14
                            CaroleK thanks so much for reporting back on your experiences! It's invaluable for us. I was just reading about Dr. Bert's work after seeing a MS Foundation? link to the conference discussion on stem cell therapies. I'm strongly considering it, and can't wait for your report that you are feeling better! I wish you comfort and peace, and as little pain and discomfort as possible as you make the journey.

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                              #15
                              Quick update

                              Hi all: seeing as I'm captive here at the hospital, I thought I'd give a short update. I have undergone all the chemo necessary prior to transplant and will get my stem cells reinfused tomorrow (what is called Day 0). I'd be lying if I said it hasn't been tough...sleeping is rough, feeling bloated and I have no appetite. Thankfully, so far, my body is handling everything as well as can be expected and I manage to walk some laps around the floor daily. I know this will be a journey, but I do remain hopeful. Dr. Burt and his staff are absolutely wonderful. I'll try to update in a week or so.

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