[StuM]

Hi all, This is Stu, from Houston, TX. I have lived with low risk MDS and/or AA for around 20 years. The experts can't really say what it is, for sure. Very low blood counts across the board, but no symptoms or issues whatsoever all that time. We've monitored and measured for years, but no intervention. I've been seen continuously at MD Anderson in Houston, plus Stanford Medical in CA and various other lesser locations around the U.S. The experts have been amazed. While always slowly trending a bit downwards; for example, recent key factors included WBC 1.6, RBC 2.38, Platelets 12 (and as low as 9), Neut's 0.48, Hemg 9.0. Everything else is always out of whack too. The platelets are what they have always been most cautious of. Yet, no bleeding, bruising, illness, infection, fatigue, etc. Never!

Yet, when the platelets began to stay in the 10-15 range week after week more recently, I was advised that it's time to take some action. I am an otherwise healthy age 58 male. After a lot of research and 2-3 other medical opinions, we opted for horse ATG/cyclosporine and all the accompanying therapy, drugs and necessary transfusions. This forum helped me a great deal with trying to understand what to expect and get over at least some of the fears and uncertainties. To all of you now, thanks very much.

I entered MD Anderson on 7/28/11 and began this phase I of the journey. I must say, MDA is an wonder, exceptional place and their entire staff is even better. I could not have asked for a more professional, communicative, supportive and responsive team, from top to bottom. Prep and check-in was quick and well planned. The facility is as good as any first class hotel I have used, around the world, as is their food service, medical and support staff.

As for the actual treatment, it went per plan, for the most part. A few experiences to share, to hopefully help others...
As many of you understand, a great may needle sticks for everything under the sun. Pre-blood testing, skin tests with the ATG to determine any potential allergic reactions before the full initial application. My skin test itched a bit, but no rash or anything else, so we were a go. My initial ATG application started out slowly and they ramped it up in stages. All went well and I tolerated well, until they got to the higher rate of application. I forget that rate, but things began to go a bit tilt at that point. The chills came on and built up quickly, followed promptly by the onset of rigor or shakes. They became increasingly violent and at some point I lost track of things. My wife was holding me and had to call the nurses in to cut the application and apply steroids. What I recall, it was not a fun trip. The cessation began to calm things down again and eventually I became re-aware of things and settled down. Nausea and diarrhea then set in and passed within a half hour, or so. We waited and then they recommenced the application, but never returned to the higher rates of application. It just took each successive application that much longer. After the completion of application one, I was OK for a while, but then we saw my temperature begin to rise. A few tenths per hour and then 1+ degrees per hour. After I passed 101, they became more proactive, applying more controlling drugs (I forget what) and having me eat ice continuously. The fever stayed below 103 for a few hours and finally broke about 4am and dropped. All appeared to be initial serum response or sickness and somewhat expected in a lot of people. After that I had three more daily ATG applications, all at the slower rates and tolerated fairly well. As most know, loads of preventative drugs, anti-fungals, -biotics and -virals, plus steroids, etc. and continuous IV's running. The next challenge was water weight gain from the steroid impacts and all the fluids. I gained 15 pounds within about 4 days and was miserable. I couldn't eat or drink much, had some difficulty breathing due to the compaction and my blood pressure shot up! (normally about 115/50 to a top of about 173/102). They finally applied diuretics to help pass some of the water, but today, 8/3, I'm still 9 pounds over what I was pre-entry and still retaining fluid and the BP is still up, but appears to be slowly dropping. (~134/78).

I took several platelet transfusions, whereas my plate's dropped to 5 on two days. Also, one unit of RBC's when they went to 2.41, although for me historically, that was no big change from my norm. I tolerated the matched-type transfusions well. My biggest problem with all of that is that in the base case I have difficult veins to find and tap (deep, small and they roll). When the fluid retention began to grow, it made vein location and tapping even harder and took multiple attempts each time. Ouch at 1am!

I was discharged on 8/2, with all the follow-up instructions and plans. All very well laid out and documented by MD Anderson's keen staff. They also coordinated an pre-packaged all of my follow-up, daily meds and we picked them up at their pharmacy on the way out. A leukemia specific pharmacist came in the day before and we went over every drug, what it would do, why,how to use and precautions. She was great. I'm now on all three prophylactic drugs, plus the ongoing Cyclosporine, Prednisone, plus agents to settle and protect the stomach and pain/nausea as needed. I will get a Pentamidine injection in about 3 weeks to protect from lung infection.

I went for my first local lab follow-up today and the counts are good. Especially for me, vs. my normal history. Most things are above where they've been for the last 3-5 years! Not normal, but remember, I'm apparently somewhat of a unique case in their eyes. Good or bad! No need for immediate transfusions today. I am to go for CBC labs 3x/wk for 2 weeks. We'll transfuse, as needed, at a platelet cutoff level of 15 and/or a Hemg level of below 9.0. If all goes well, I should drop to CBC's 2x/week after that and then we'll keep monitoring. I go back to the main MD Anderson Clinic and my primary Doc on 8/25 to take an overall look. In the interim I will use their satellite facility near my home for everything else, which makes travel a lot easier. A local hospital ER, associated with the the local MD Anderson satellite facility, can perform emergency or prompt transfusions, with appropriate typing confirmations each time, if I get into a bind. That's comforting to know.

(contined in a next Part 2)
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