Mark has graciously acceded to my posting on his blog. Thank you very much.
This is a rare decease indeed as I am sure you are aware if you have come to this site in search of information or looking to obtain the experiences of ones who have gone before. Anxiety can really get you when you are first diagnosed with T-PLL. But my experienced tells me that the best is to buck up and not to let it get you down. Mental attitude is key. Just do not let the diagnosis get you down.
Actually going through the CamPath regime has been very easy for me. The only reaction were the chills occurring the first two days of shots and they went away with the taking of an Aleve pill or two. After that there were not symptoms. Even the bone marrow biopsy to determine whether the lymphocytes had been destroyed by the CamPath injections was a piece of cake.
The regime consists of being given a subcutaneous shot three times a week until it is determined that the bad T cells have been destroyed. From there it is on to a maintenance regime.
I would be pleased to communicate with you should you desire. Just let Mark or Shirley know and they will put us in touch.
Monday, June 08, 2009
Michael in Michigan writes: