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mimi

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About mimi

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  1. I had my transplant at Northwestern almost 2 years ago. My insurance company is/was United Healthcare. I had no problems. I would be more than happy to send you any info that you need. Mimi
  2. Marjimaybe- Dr. Richard Burt at Northwestern Memorial Hospital in Chicago is doing amazing things with stem cell transplants (using your own stem cells) for all kinds of diseases. If he can't help you, he will guide you to anyone that can. I had a stem cell transplant last year for systemic scleroderma. All my lung functions are better, my skin is soft and loose again. I feel FANTASTIC!!!! EVERYONE who has a chronic disease owes it to themselves to check this out. Dr. Burt t is willing to talk to just about anyone about this. I can help anyone who wants to learn more. There is hope ou
  3. It does mess with the data a little bit, but as Dr. Burt said--yes, data is important, "but I'm just trying to save people's lives". He truly is an amazing person, as well as an amazing doctor. I know he would be willing to speak with anyone interested or curious. Mimi
  4. My Raynaud's has not changed. They told me not to expect that to. My GERD has improved, but I still take nexium. As far as body aches, mine were minor pre transplant and are gone now. I know 2 others who participated in the ASSIST trial who were racked with pain pretransplant and both are back to an extremely active lifestyle. I also have not had any colitis attacks since my transplant-I used to suffer from these at least monthly. My fingertip sensitivity is gone. I can make a fist. I can do buttons and open jars. My pigmentation is back to normal. A lot of the symptoms of scleroderm
  5. I am one year post stem cell transplant. I received my transplant at Northwestern by Dr. Richard Burt. My DLCO went from 45 pretransplant to 60 today. My CT scan shows "marked improvement" to my lungs. My skin score went from an 18 to a 9. There are two main differences between the SCOT trial and the ASSIST trial. The Scot trial uses total body irradiation. (Radiation has serious long term risks, including Leukemia.) The other difference is that the SCOT trial does not have a crossover. With the ASSIST trial, if you get the cyclophosphamide arm and you do not see any improvement after 6 months
  6. Gidget Just wanted to let you know that I am thinking of you. I am not sure how much Cytoxan I received, but I am glad you are in the midst of treatment and that they are being aggressive! Hang in there. Mimi
  7. Anyone considering the Scot trial should look into the ASSIST trial at Northwestern Memorial Hospital in Chicago. I had qualified for the SCOT trial and then did some research and came to MY OWN conclusion that the radiation used in the SCOT trial would pose too much of a health risk for me. The ASSIST trial uses the same protocol but does not use radiation. They also have a cross-over. This means that if you get the Cytoxan arm and after 6 months it has not shown to be stabalizing your disease, you can cross-over and have the stem cell transplant. I just had my translant 3 weeks ago
  8. Sweet- hope all is well. thinking of you. Mimi
  9. Thanks to everyone for their thoughts and wishes! Now it's just time to hang on and "enjoy"? the ride! Mimi
  10. Dave First off--so sorry to hear about the passing of your dog. We have always had animals and I know how sad losing a "family member" can be. I am sorry for the timing too. Second--I am also sorry for your little bump in the road. I do feel that everything happens for a reason (I know this statement will anger some) and that this glitch will be just that. All of us here know that life is not a gentle road! You have an amazing attitude and outlook--it will get you thru! Thinking of you Mimi
  11. Well, I just found out today that my insurance company (United Healthcare) approved treatment in the trial at Northwestern. I will be randomized next week! I will keep you posted. I have started a Blog to keep friends up to date. It is "Amy Daniel's Blog on Clinical Trial at Northwestern" which is listed on the ISN Story Collections page. Dave----I am keeping my eye on you! Thus far you are my hero! Stay strong! Mimi
  12. Dave I am thinking of you and sending you good vibes! My fingers are crossed! Mimi
  13. We were in the middle of a horrible remodel on our house--contractors in jail--money stolen, etc. I also had just given birth to my second daughter. My symptoms started 2 1/2 months after her birth-I was diagnosed one year later. I was perfectly healthy until then. I sometimes wonder if it was all the stress and the pregnancy, but then I wonder if it was something in the construction dust. We stayed in our house during the remodel and the WHOLE house was always a mess with dust. We had the whole house re-drywalled (we did move out for 2 weeks during that process). My daughter always has re
  14. Hello I have finished the screening for the SCOT trial and after MUCH thought, have gone on their "decline" list. Thankfully, my MD-who is a participating SCOT MD is respecting my decision. I talked to Dr. Lawton, a world-renown radiation oncologist, and although she said she feels the amount of radiation in the SCOT trial is "safe" and minimal, and the organ shields are "perfected", she cannot guarantee I won't have complications in the future due to the radiation. I am just not willing to take the risk at this point in my disease. If it is found out that radiation is THE answer, I ca
  15. Dave What made you decide to do the SCOT trial over the Northwestern one. I am ready to be randomized for the SCOT trial next week with treatment starting Dec. 18th, but am seeing all the doctors at Northwestern next week for tests and talks on their trial. I am VERY fearful of the radiation in the SCOT trial. My MD (who is participating in SCOT trial here in Milwaukee) is trying to convince me to stick with the SCOT trial, but Dr. Burt (at Northwestern) has some pretty compelling evidence AGAINST the full body radiation part of the SCOT trial. I went to a symposium in Chicago last w
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