Jump to content
Sclero Forums


  • Content Count

  • Joined

  • Last visited

About mimi

  • Rank
    Bronze Member
  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 out there. There is a treatment that can get you off all those meds. It may not be for everybody, but there is a way to get your life back. I am a living, breathing example! Mimi
  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 scleroderma are a daily irritant, but the transplant will help the ones that can kill you. Mimi
  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, you can cross over to the stem cell arm. The ASSIST trial also has a much broader qualification range. Dr. Burt is pretty willing to "make acceptions". I urge anyone who is seeking a stem cell transplant to realize that you have options and to do your homework. The SCOT trial is not the only trial out there. I feel like a new person. A healthy person. You can too! Mimi
  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 and I am doing great. I know there is a link to my blog here somewhere. I realize that both trials have some of the BEST of the BEST doctors behind them, but after going thru both screenings and talking EXTENSIVELY with docotors on both sides, I feel that I absolutely made the right decision for myself. Feel free to contact me if you have any questions. It is a difficult decision to make. I am 39 and I have 2 small children. I had minimal skin involvement-a score of 16 and my DLCO was at 43%. I wanted to nip this thing in the bud and not wait around until I was knoking at death's door. I choose not to try other medications first and to just GO FOR IT! It hasn't been an easy road, but it has definitely been the right road. Good luck. Mimi
  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 respiratory "stuff" going on. Mimi
  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 can have it at a later date. I am now in the screening phase for the ASIST trial at Northwestern. I hope to start their study sometime in January. In my process of discovery, I have talked to 5 "experts" in the field and they have all basically told me that the decision is MINE. NONE of them would give me anything further than information and options. NONE of them gave me the same answer. I always ask--if the studies weren't here, what would you be suggesting for treatment. The answers I have recieved have varied from "watching me" to "cytoxan" to "cellcept". They all say it depends on how aggressive I want to be. One rheumatologist at Northwestern thinks these studies are the way to go, while the other one is more reluctant to reccomend them-saying they are so experimental. It is VERY difficult to have such a decision resting on my shoulders. I feel like I have 4 choices and if I don't make the right one, I die. I also feel like I have information overload and it's time to make a decision. I have been waiting since June to start a treatment and my lungs are not getting any better. I feel like I have taken the "wait and see" approach and it is time. Unfortunately, this disease is such an unknown and the outcomes of ANY treatment are also an unknown. I understand that it is SO important to participate in these studies--for the purpose of data collection and finding a "reasonable" treatment/ "cure", but I also feel like I need to be looked at as a human being and I am trying to save MY life. I think sometimes we get lost. Since this is not a textbook disease, I think the MD's are just as confused as to the course of action. It stinks, but that is Scleroderma. I have based most of my decisions on my repore with the doctors and my gut reaction to what they tell me. This has seemed to work for me so far--so I say keep going to MD's until you find one that tells you something that seems reasonable--something you can "live" with. All I can say is: Be informed. Check this site often, even if you don't respond, this board has the best info out there for sure! Keep EVERY piece of info. from your chart-every MD note, every test result, every lab result, every xray. (especially if you are going from MD to MD). I have a HUGE binder all organized by MD and procedures. It is very easy for me to find info instantly and that saves time at each MD visit. Plus, most MD's are highly impressed by this and therefore tend to respond better-they know you are on top of things. Do not be intimidated by MD's. Ask questions. Ask questions. Ask questions. If something doesn't seem right-it isn't. Be your own advocate. Good luck in your quest for treatment. It is a difficult and lonely road. Mimi
  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 weekend and I am absolutely thinking of NOT doing the SCOT trial and qualifying for the Northwestern trial. I spent the entire day at my local hospital yesterday having tests and will repeat them all at Northwestern next week. My skin score is only 18, but my DLCO has dropped considerably. I am asymptomatic and my PFT's from yesterday DID improve SLIGHTLY over the last 3 months. I have been in the screening phase for the SCOT trial since June--lots of little glitches came up, and I had to repeat ALL the tests. This has given me WAY too much time to mull all of this over. I am VERY confused at this point and am just awaiting to talk to the Northwestern MD's next week and see what they have to say. Dave, let me know what factors are affecting your decision-please! Thanks Mimi
  • Create New...