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MDS Myelodysplastic syndromes

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  #126  
Old Tue May 14, 2019, 02:46 PM
DanL DanL is offline
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Meri,

Congratulations on 2 years. I am sorry that I did not see this sooner. The questions I might have asked include progress of GVHD, current level of medications and whether they can be reduced, check on the status of vaccinations, especially in connection to the recent outbreaks of measles, etc. I would also ask if there is any benefit to potentially changing up drugs to something other than cyclosporine. The only reason I would ask that is that i have had gut GVHD since transplant (5 years now), and recently added MMF to my regimen, and suddenly everything is normal for the first time in years, which is an odd experience. i almost forgot what normal felt like.

Hopefully you got great answers during your last visit.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD.
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  #127  
Old Tue May 14, 2019, 10:35 PM
Meri T. Meri T. is offline
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Thank you Dan and Neil,
My 2 years post transplant check is in 2 weeks. So still time to note things down for the visit.

Vaccinations. If I am still on cyclosporine - immuno suppression, then I think vaccinations are not administered. Will still ask the doctor about it.

Cyclosporine. I am taking 25mg every other day. Last year we halved the amount of cyclosporine, I had gut GVHD. I will ask about MMF. Googled it- sounds like a very powerful drug. Glad it worked for you Dan.

Will try to see what drugs can be reduced safely. Prednisolone!? I am taking 4mg/day. I will ask the doctor about Prednisolone.

My hospital is now BRAND new. Google "Toranomon hospital" (Entrance of the Tiger) right next to the Diet. They built it next to the old one, and hospital staff moved in a few weeks ago. Looking forward to seeing the hospital. Top 19th floor is for VIP patients with security gates. SCTs are on the 18th floor.Why am I talking about the hospital? I should be focussing on seeing the doctor and my gvhd. Shows how stressed I am.
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Female 53, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in June 2017. Some GVHD skin.
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  #128  
Old Tue May 14, 2019, 10:39 PM
Meri T. Meri T. is offline
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Dan,
How is your auto immune attack?
Hope you found some drugs to clear the CNS.
Meri
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Female 53, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in June 2017. Some GVHD skin.
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  #129  
Old Sat May 25, 2019, 02:18 AM
Meri T. Meri T. is offline
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Meeting my donor !

I am meeting my donor in a few days. I know, I know, my donor is my brother, but I haven't seen him since he gave me his stem cells 2 years ago. He's flying over and we will have tons of stuff to talk about.

I have 5 brother and sisters. He was the only one that matched. It was a bit scary at first, to see if I could find them all. After the war, we were kind of dispersed, if that's the right word; Vietnam, US, NZ-Australia and Japan.

I am not of Japanese ethnic so the hospital mentioned using the Japan donor system wouldn't help much, so all hope was for a sibling HLA. The hospital gave me a saliva test kit, like the ones you see in the movies, I sent them the kit, they took their saliva and sent them back, and then the kit was sent to the laboratory for HLA testing. It's easier than drawing blood.

I videotaped my brother's stem cell being taken, 6 hours ! Before that he had injections for 3 days to increase his white cells. After the ordeal he suffered a numb head for a while. Never complained at all. We are close now, he asks about my health more than my other siblings. Maybe because my marrow and his are the same now.

Meri
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Female 53, diagnosed MDS RAEB1 in August 2016, watch and wait for 9 months. Sibling match - Stem cell transplant in June 2017. Some GVHD skin.
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