Mixed results from ATG treatment

[Mark NTN]

I received a 4 day treatment of ATG last November for hypoplastic MDS and have been on cyclosporine since that time. My results are a mixed bag so far. As of this past week my platelet conut which had been below 10k twice is now at 57k so it looks like there has been a positive effect there. My hematocrit which has dropped into the low 20 range twice and required transfusions has held steady at 26 for a couple for a couple of visits now plus I have been taking Aranesp shots for about month although there does not seem to be any improvement in my RBC counts. My white counts which had been in the 1.7 range have been as high as 2.7 and my last count was 2.4 so there has been no true trend. I knew going in that any results from the treatment would take a good 2-3 months to start working. I would love to hear if anyone else has had similar results or could offer any ideas as to what may make the other counts start to trend up.

[Alice S]

Hi, I have been watching your post hoping someone would respond. ATG is usually used to treat AA, I don’t know if anyone here on the forum with MDS has been treated with it, but having said that I did read the results of a study done (I can never remember where, as I look at a lot of MDS information) into using ATG and cyclosporine for MDS. The study was done over a period of time 5? years and the results were actually very good. I have actually asked my mom to discuss this with her hematologist (the idea being that the hematologist check out the relevant medical studies – she should find it faster that I will. The hematologist also knows that I am like a blood hound trying to find something that will help my mom.)
It happens very often that counts get worse at the start of a treatment and then get better or at least recover. One thing you will have to realize is that each persons case is very different, even more so that with cancer.
I know I have not been of much help and I am still hoping that someone will be able to help you here.
There is a lot of advice here from wonderful people on natural ways to help counts, go back to older posts. Also it is very important to stay healthy and boost your immune system.
Alice

[Arlene]

Dear Mark, I am so glad you for that your counts are going up. My husband has hypoplastic MDS, but has taken only cyclosporin and his counts are pretty much normal now. He has been on this drug for approx. 10 months and he is doing quite well. His counts prior to this were in the toilet (kind of like yours) and he was tx each week with either platelets or blood. Aranesp never worked for him. I have been wondering about the ATG and was thinking if the cyclosprin gave out, maybe they could add ATG. Was the infusion bad? I understand a person gets quite sick. I wish you lots of good blood counts! Arlene

[Stephanie]

Hello Mark, I had the ATG treatment in Sept 01 & though I had a terrible allergic reaction & had to discountinue the treatment. With a fever of 106+, huge hives, + all the other vomiting and such, it was terrible. I came very close to loosing my life. I believe in the instances the Drs will use ATG for MDS patients is when there is a hypoplastic marrow present. It seems that this is always the common diagnosis present. They are still looking for me a suitable donor, however, I have no match available-anywhere! So, transfusions and blood sustaining meds like Nuelasta (for the white counts) Procrit (for red counts) They give me steriods for my platlets. (opinion only) I think you should give the ATG some more time, if you just received it 3 months ago. It can takeup to a year; I’ve read from others over the years. My step-mother was just diagnosed with MDS a year and a half ago, went into remission, came out of remission and is now undergoing a stem cell tranplant. So please keep Glenda in your prayers! I was diagnosed in 7-2000. She & my dad have been married for 25 years or so. I wonder what we could have in common that we could both end up with this dreaded RARE disease??? Very Odd? Perhaps many trips over to Old Mexico, they live near the Texas/Mexico border. The horrible exhaust over there.

[Stephanie]

Sorry Mark I am going to have to get into gear and figure out this web-site again. I hit the wrong button again and ended the private e-mail before I was finished and now I have to run and go make some $$. I have a salesman taking off today-I usually don’t have to work on Saturdays. It will only be for a couple hours. Anyway, I am strongly believing in prayer that your counts will continue to grow in numbers. I will figure out the system later and finish my message. God Bless. We are workers together with God. 2 Cor. 6:1

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