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  • LUPUS and STEM CELL

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    Old 11-24-2006, 08:01 PM   #1
    builder
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    LUPUS and STEM CELL

    Does anyone know of someone who has goine thru the experimental stem cell treatment being done at Northwestern Univerity in Evanston Ill. and UMass in Mass. I believe the doctor's name is Traynor. I had my girlfriend all set up to go get this treatment done, but she died suddenly from Lupus before she had a chance to get treatment. There are many people who have been symptom free for two years after the treatments. There was a write up about it in the Chicago Sun Times also.

     
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    Old 11-24-2006, 08:14 PM   #2
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    Re: LUPUS and STEM CELL

    I am so sorry about your friend. What did she die from?.....what symptoms?...I do not know anyone who had the stem cell....but am curious what it is that kills people to Lupus besides the kidney problems?....Hope you find some answers here...
    MichelleAnn

     
    Old 12-02-2006, 06:11 PM   #3
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    Re: LUPUS and STEM CELL

    I am sorry for the loss of your friend. I live right near UMass (I can see it from my house) and I have not heard of this treatment being done there. My mother is also a visiting nurse for Umass Memorial and she has not heard of this study. I will look into it, though, and if I get any info I'll post it here.

     
    Old 12-13-2006, 07:07 AM   #4
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    Re: LUPUS and STEM CELL

    Hi Sorry for your loss! I have lupus for 5 years now and just keep praying that would go into remission. my sister had a baby couple years ago and save her umbilical cord blood and bank it to Viacord. and she told me that I could used it if I ever needed it. which is nice. I think it would be the same as stem cell not sure. but I ask my doctor about it and she said yes they can do that but I have to be in really bad situation first before they can use it on me. because of the risk. maybe you can ask some rheumy doc about it maybe they have some answer for you.

     
    Old 12-16-2006, 11:41 AM   #5
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    Re: LUPUS and STEM CELL

    I'm so sorry to hear you have lost a girl friend to lupus.

    I am scheduled for stem cell transplant at NW in Chicago. I did not now they were doing this at the Evanston location. I was not aware they even had bone marrow transplant procedures done there.

    I am working with Dr. Richard Burt the pioneering immuneotherapist who did the first stem cell transplant for lupus. He worked with Dr. Ann Treynor who is now as I understand it working at the University of Mass. They also work with Dr. Barr a rheumatologist at NW.

    I am scheduled to begin the end of Jan, with harvest scheduled for mid Feb and conditioning chemo early March, transplant mid March.

    I have had lupus since 1983 which predominately affects my blood cells. I have thrombocytopenia, anemia, APS, vasculitis and failed all treatments and require high dose immune suppressant treatments (cellcept 3000mg dialy, prednisone 15mg dialy) I also have high blood pressure, pulmonary hypertension and have had numerous clotting events in the past with DVT's and PE's on several occassions. I continue to have clotting despite anticoagulation, thrombocytopenia despite multiple treatments, anemia due to blood loss I experience with anticoagulation and low platelets. This results in iron anemia which requries iron infusion.

    What lupus symptoms did you girlfriend have and what complications were the result of her death from lupus? Again, I am sincerely sorry to hear of your loss and hope that you are managing despite this unfortunate loss.

    Kim

     
    Old 12-16-2006, 07:37 PM   #6
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    Re: LUPUS and STEM CELL

    Good luck to you Kim! You are a pioneer for the rest of us who may need this treatment some day. (I am 27, diagnosed with SLE 2 yrs ago.) Is it true that they basically have to wipe out your entire immune system to do this procedure? Just how dangerous is it? And how long is the recovery process? Will you need to stay in a clean room? I'm sorry for all the questions, I am just very curious about this. If you feel up to replying I'd love to hear what you have to say.

     
    Old 12-16-2006, 08:53 PM   #7
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    Re: LUPUS and STEM CELL

    The entire process will take at least 2 months and probably longer. It is almost a 2 week process to harvest stem cells. The harvest procedure generally starts with a 1-2 day admission for chemo and 1 week of injecting yourself with a growth hormone that will stimulate stem cell releas into the blood stream. That is the first part and I'll need to stay near NW to visit clinic daily for tests. This is referred to as mobilization chemo and harvest.

    After that part of the procedure I will be given a 2 week rest before starting the chemo to destroy my immune system. This chemo will be daily and require inpatient of 1 week of high dose chemo and on the 7 day I will be given my stem cells back. This is referred to as conditioning chemo and transplant.

    Once I get my stem cell back it is expected to take 3 weeks to produce enough immune system and blood cells to be able to be discharged, but most likely still be immune comprimised and low in blood cells. This is referred to as engraphment wihch means the stem cells injected into the blood stream need to find their way to the bone marrow and begin growth process.

    Generally a patient needs to be seen in clinic once a week for another couple of weeks before being released to their treating physician. This is needed util enough immune system and blood cells are produced to protect against infection, bleeding and anemia.

    Since many patients live out of town, temporary housing will be necessarily for the 2-3 months. I live just south of Green Bay Wisconsin, so we will be renting short term corporate housing near NW. NW has some arrangements with local hotels and studio corporate housing with slightly reduced rates. It is expensive to rent housing in down town Chicago and will cost us $2000-2500 for one month.

    I am originally from Chicago and have family in the metro area, so we will stay some of the time with them, but when it requires daily visits to clinic, to make it easier, we will rent housing close to NW.

    We have family all over the US and to keep them informed of the procedure I have set up a care page which NW has suggested. If you would like to follow what happens to me daily, you are welcome to visit my care page.

    [url]www.carepages.com[/url] the name of my page is kimrebuildsimmunesystem.
    That's Kim rebuilds immune system wtih no spaces. I started it in Nov while I was deciding if I should really do this, so it will contain some of my thoughts and what my lupus was doing in the process. I suffer with bleeding from thrombocytopenia and clotting from APS and also have vasculitis. I the care page I discuss what my blood counts are, treatments for blood loss due to GI bleeds which cause iron deficient anemia. I am also on anticoagulation due to repeated blood clots from APS and the coumadin contributes to bleeding. This was the main reason why I decided to pursue the transplant.

    I have been on immune suppressant treatments for pretty much 23 years of dx with only a short time span of 2 years or so without treatment. There is a chance that the drugs have suppressed bone marrow production and in that case I will have to decide if I want to pursue al allogenaic stem cell transplant with a sibling mathed donor. I have 7 brothers and sisters all willing to donate if they are a match, but the procedure becomes more dangerous with the possibilty of rejection and rejection drugs similar to other types of transplant. I don't know if I will pursue this if the transplant of my own stem cells is not successful because part of my decision to pursue is also based on getting off the immune suppressant treatments I am currently on as they often lead to injections. I have lots of UTI's, skin infections and currently have a GI infection similar to food poisening. I had my spleen removed 23 years ago to try and stop the thrombocytopenia which does leave me more exposed to dangerous infections.

    You may now be sorry you asked me your questions because I find it theraputic to talk about it and hate to always talk with my family members, so I am a member of a few boards and also the care page helps me talk through what I am to expect.

    Kim

     
    Old 12-17-2006, 08:04 PM   #8
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    Re: LUPUS and STEM CELL

    She had it about ten years. She had to have both her legs amputated due to the arteries in her legs closing. She also kept getting clots. They said the Lupus was attacking her blood vessels. They claim she died from Pneumonia. I had her set up for the stem cell treatments but she never went. I don't know if she gave up or not. She also refused rehab for her artifical legs. She would always claim Northwestern didn't contact her. I am sorry I didn't put more pressure on her to go, but she was doing pretty well so no one thought she would die so suddenly.
    Someone mentioned they are going in for treatment at Northwestern. Please keep me posted on how you feel and if you think its working.

     
    Old 12-17-2006, 09:07 PM   #9
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    Re: LUPUS and STEM CELL

    It sounds like her lupus was similar to mine. I have repeated clots and have had many problems with my legs and clotting up along with multiple PE's.

    My legs are so painful and alwasy show signs of blood clots with skin changes, sores and other signs that blood is not getting to tissues. My greatest fear is loosing my legs, but so far most of my clots have been in veins not arteries. I also have vasculitis with my lupus and have a lot of neuropathy and severely burning pain. My lupus attacks blood cells and vascular, so I have major problems with platelets and red blood cells.

    It was a hard decision for me to continue pursuing the stem cell transplant, but i really don't see other options. I've tried so many drugs that would seem to work at first and than stop working. I've had chemo several times and am on prednisone daily at high dose. I have high blood pressure and have gained so much weight which just contributes to the pain in my legs. It feels like a circle of destruction that just never stops. Treatment has so many side effects that just contribute to the destruction from lupus.

    I am scheduled to begin transplant pre-testing late Jan, with harvest in mid Feb and transplant in March. If all goes well I'll have a new immune system by April or May and can come home from the hospital.

    I am so sorry your girlfriend had to suffer so much and wish she would have made the decision to pursue the transplant, but I understand her reluctance because it took me several months to finally decide to move forward. Actually it was brought up almost 4 years ago, but I felt I was not that sick. If I had made the choice then, I may have not lost mobility in my legs and possible avoided several clots, but I can't dwell on the what if's.

    There is so much written about lupus going into remission, I kept thinking I'd get a remission or at least a let up of some sort, so I suspect it was a hopeful thing that kept me from the transplant. Maybe this was your girlfriends subconscience thoughts too and why she did not push. It could be you also had the hope that she would sustain a remission. So many people have such mild cases, that lupus is not always taken seriously, but even the mild cases must be watched and anyone with lupus should be made to understand that it can be very serious. I've read of lupus patients with very mild disease that flared and ended up dying in a very short period of time. You just never know and patients should be educated well to understand.

    Of course that is not always easy because you don't want the patients with mild disease to end up dwelling on it and becoming depressed about the possibilities, so I can understand why doctors don't always treat the lupus patient and educate them in what can possibly happen.

    I have set up a care page at [url]www.carepages.com[/url] to let my family and friends know what is going o while I'm in the hospital. Many of my friends and family live around the counrty and will not have first hand knowledge so this is my way of letting them know what is going on. It will also be an outlet for me to journal the process. If you would like to follow, you are more than welcome to log on and register. The name of my carepage is
    kimrebuildsimmunesystem. That's Kim rebuilds immune system with no spaces.

    Regards,
    Kim

     
    Old 12-17-2006, 09:10 PM   #10
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    Re: LUPUS and STEM CELL

    By the way, where do you live in Chicago? I'm from Chicago, grew up on the NW side near Lane HS. I went to Schurz, but my brothers went to Lane. I'm giving away my age, but when I went to HS it was just starting to let in Girls. It was an all boys school when I started HS, but went coed in my sophmore year.

    Are you from Chicago?

     
    Old 12-20-2006, 02:39 PM   #11
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    Re: LUPUS and STEM CELL

    I'm near Midway Airport

     
    Old 12-20-2006, 09:22 PM   #12
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    Re: LUPUS and STEM CELL

    A south sider! Bet you're a Sox fan too.

    I grew up not to far from Wrigley Field, went to Schurz HS, bought our first home in Roscoe Village. We just moved to the Green Bay, WI area. Packer Country, but we fly our Bears flag. The neighbors love us!

    You from Chicago originally?

     
    Old 12-25-2006, 09:22 PM   #13
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    Re: LUPUS and STEM CELL

    Chiming in as a lupie - and former resident of Elmhurst, on the west side of Chicago. I went to York High ages ago. Small world.

    I was dxed in 1999, but have had a blessedly mild course of with lupus so far. The fatigue and arthritis are the ongoing bothers but are tolerable.

    Restarre, sorry for the loss of your friend.

    Good luck to you, Kim!

    Wishing all well - Barbara

     
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