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AA Aplastic anemia

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Old Tue May 10, 2011, 03:15 PM
mscrzy1 mscrzy1 is offline
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AA and chemotherapy

I've been doing a lot of research with the connection of autoimmune diseases, specifically lupus, and AA. When doing this, I came across this interesting little tidbit on the Johns Hopkins website...

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Chemotherapy
Now lets talk about chemotherapy, the gold standard for the worst lupus. Are there other ways to give chemotherapy, so you wouldn't have to give it once a month for six months and then for two more years every three months? An oncologist at Hopkins studied a disease called aplastic anemia, where the blood counts are so low the person has to have a bone marrow transplant. He asked, for the people who survived the transplant and did very well, whose immune system did they have? The donor's or their own? It turns out all the long term survivors had their own immune system. They hadn't been cured by the bone marrow transplant. The hypothesis is they were cured by the chemotherapy given before the bone marrow transplant. The oncologist gave the chemo for four days in a row and then never again. This oncologist decided to start treating aplastic anemia with four days of chemotherapy instead of doing bone marrow transplants. In the next 10 patients treated just with chemotherapy, seven out of 10 had a complete remission. Three did die of the aplastic anemia, but no one died of the four days of chemotherapy.
I took this from http://www.hopkins-arthritis.org/arthritis-info/lupus/. I'm going to get tested for lupus. It seems to be the only cause or associated disease with raynaud's that I can't totally discount. And, I'm finding some articles and even another person who has connected their AA directly to lupus.
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Angie

36 yr. old, dx SAA in Jan 1996, treated with ATG in Mar. 1996, off cyclosporine Sept. 1996, last blood transfusion in Aug. 1997, slow decline in counts again November 2010, AA and current count decline thought to be caused by lupus, currently taking 400mg Plaquinil

Last edited by mscrzy1 : Tue May 10, 2011 at 03:24 PM. Reason: typo
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Old Tue May 10, 2011, 04:31 PM
Marlene Marlene is offline
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That's High Dose Cytoxan. Dr. Robert Brodsky headed up the clinical trial at Hopkins for Aplastic Anemia. They have used it for other autoimmune diseases with varied success. The latest was for a certain type of MS.


John did HiCy for his SAA in 2002.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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Old Wed May 11, 2011, 01:01 AM
mscrzy1 mscrzy1 is offline
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Marlene, thank you for giving it a name for me! I had never heard of doing that for AA. I was only given the option of ATG or bone marrow transplant (would have been unrelated donor, which at the time was considered to have a very iffy success rate) when I was dealing with my SAA. When we thought the ATG wasn't working, my dr. told me that if he could just get me to live 5 more years, my options of treatment wouldn't be quite as grim. Now, reading and talking with drs. today, I have to say that he was right.
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Angie

36 yr. old, dx SAA in Jan 1996, treated with ATG in Mar. 1996, off cyclosporine Sept. 1996, last blood transfusion in Aug. 1997, slow decline in counts again November 2010, AA and current count decline thought to be caused by lupus, currently taking 400mg Plaquinil
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Old Wed May 11, 2011, 02:13 PM
Lisa V Lisa V is offline
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Angie, here's another thread on this same topic: http://forums.marrowforums.org/showthread.php?t=492

As Marlene says, high dose cyclophosphamide (aka high dose cytoxan) is the protocol developed by Dr. Robert Brodsky at Johns Hopkins. As far as I know, he is still the only one using it. From what I understand, it is not recommended for anyone who has had previous ATG treatment, as that tends to lower the success rate.

If you want to contact Dr. Brodsky directly: http://www.hopkinsmedicine.org/hemat...brodsky_r.html
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-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine
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Old Wed May 11, 2011, 06:19 PM
mscrzy1 mscrzy1 is offline
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Thank you, Lisa!
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Angie

36 yr. old, dx SAA in Jan 1996, treated with ATG in Mar. 1996, off cyclosporine Sept. 1996, last blood transfusion in Aug. 1997, slow decline in counts again November 2010, AA and current count decline thought to be caused by lupus, currently taking 400mg Plaquinil
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