Friday, February 13, 2009

Experience with T-PLL

Thank you Mark for inviting me to join this blog.

I am a member of the elite club of individuals who have been touched by T-Cell PLL. My husband was diagnosed in December of 2007. "Watch and wait" until symptoms surfaced indicating it was time to treat. Just completed 18 weeks of Campath given sub-q three times per week. So far results are very good. I have spoken to others who were given Campath IV many years ago and also read a lot of the literature, so we were plesantly surprised that there have been NO symptoms to speak of to date. Next round will be what is being called 'Maintenance' which will consist of 24 more injections over the next year. The procedure will be to gradually taper the dosage off over the time period with hopes for a sustained remission at the end.

Would love to hear from others who have this disease as we are few and far between. In fact, our Oncologist told us "You would be hard pressed to find 10 cases of T-PLL in the US right now." Better odds wining the lottery..