The appointment yesterday went well. When I get back to Florida I will speak with the doctor about getting a port so I don’t have to get stuck all the time. If you are going to get Campath shots be prepared to be in pain. Both of my arms hurt from the Campath shots, it makes it difficult to sleep. If I roll over on my arms I have lots of pain. I can have the shot in other locations, but if it hurts in the arm, where else on my body do I want to hurt. I am dreading the dose I will get today since it is the maximum dose of 30mg. I don’t know how much worse the pain to get.


The Campath is a needle injection that takes a few seconds, unlike the Cladribine which is via IV drip and takes two hours.

The premeds were Zofran 8mg and Ativan 1mg. I received my fourth dose of Cladribine, 8mg. The IV took two hours.

Six vials of blood were taken for research; a seventh was taken for blood work.

Mike called Moffitt and was successful in obtaining a copy of the bone marrow biopsy results, which were faxed directly to Dr. Loughran’s coordinator. Mike also contacted Dr. Sokol’s nurse to try and facilitate the discussion of treatment in Florida. An e-mail was sent to me from Dr. Sokol’s office stating that contact has not made yet. The e-mail also had a note from Dr. Sokol that discussed the bone marrow results. “Bone marrow biopsy done at Moffitt Cancer Center confirmed diagnosis of T-PLL with normal cytogenetics. My treatment recommendation would be induction therapy with alemtuzumab followed by allogeneic stem cell transplantation”.

At this point the two doctors have different courses of treatment. Once they talk we believe that will be resolved.

I want to remind everyone that my disease was caught much earlier than the others that I have been in contact with that have T-PLL. Although this is my journey, I want to remind my friends and family that everyone’s journey is different. I am very lucky to have had no major side effects as opposed to the experience some of my new friends that have the same disease have been through. I call them my friends because they refer to people with T-PLL as an elite club with a terrible disease. Please feel free to click on the links to the right to read their stories.

Yesterday was Day 4 – Two months and 26 days and counting