ATG at Moffitt

[scully]

Well, I finally got around to having ATG at Moffit and returned home on Monday. It was a pleasent experiance I must say, very little side effects except for some itching and sweating. No nausea, very little shaking. WBC at addmission was 0.69 which is lower than my norm of about 1.5. Now after being home for five days and neuprogen daily the fun has begun. It has been a while since I took neprogen and when I have in the past it has been very short term never over three days. Based on what I have read I guess this bone pain is normal? Or Im asking that I guess. I am on tons of other antibiotic, anti fungle, cyclosporine, prednisone, ect, ect. Other than feeling dumbed down the last few days I feel preety good. I forgot to ask the Doc today about the pain. Any answers would be appreciated.

Scully, Male age 46, Ormond Beach Fl
Diagnosed MDS Aug 2010

[Ellen McDonough]

I remember the bone pain.I think it goes with the turf but call your dr if you feel uncomfortable Hope you feel better soon!
Ellen

[scully]

It seems like every time somthing goes wrong it is a weekend. After about 5 days post ATG, Saturday morning I awoke to find a horrible rash. Torso and thighs. Iched a little so opted for Beynadryl. Went to the local hospital for a schedual neuprogen shot and got lucky and found the On Call oncologist from my local doctors. She was not farmilier with my case but was very patient and called for some labs, Platlets were at and amazing 60 which relieved me. I called Moffitt and spoke to Dr. Lists on call person and between the two they said I should stop cyclosporine until I can be seen by my Dr. Monday. I had already taken my second round that day so I would stop Sunday. Sunday arrives and the rash has spread to my feet (top and Bottom) and chins. Still only minor irritation but looked awful. During this entire event I experianced some of the worst pain in my life in my legs. Everything hurt to the touch and my legs felt like the muscle had shrunk inches and almost impossible to straighten them out. Anyway Sunday came rash has not gotten worst, No cyclosporin today, see Dr. Monday.

I don't know if the rash was a side effect from Cyclosporin, side effect from serum sickness or from Neuprogen, but its hard on the weekends when you can't get your regular Oncologist. I can live with the side effects and I can live with the disease, but I hate living in uncertainty.

Thats my rant of the day.

Harvey, Ormond Beach Fl