Monday, June 08, 2009

T-PLL and Being One of The 10 or So

Michael in Michigan writes:

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.


Dennis Pyritz, RN said...

Open invitation to you and your readers to participate in the Being Cancer Book Club. This month we are discussing “The Last Lecture” by Randy Pausch. “...the lecture he gave ... was about the importance of overcoming obstacles, of enabling the dreams of others, of seizing every moment (because “time is all you have…and you may find one day that you have less than you think”). It was a summation of everything Randy had come to believe. It was about living.”
Monday is Book Club day; Tuesday Guest Blog and Friday Cancer News Roundup.
Also check out Cancer Blog Links containing almost 200 blog links and Cancer Resources with 230 referenced sites, both divided into disease categories.
Please accept this invitation to join our growing cancer blogging community at
Take care, Dennis

Sarah said...

My dad was diagnosed with T-PLL in May of this year. This is the first and only online support I have come across in my searching. Thank you.

Anonymous said...

Sarah, you should email Mark so that we can communicate with you. This group of people are most willing to share their experiences and help as they can.


Mark said...

ditto what Michael said!

Lui said...

Hello. I am encouraged by what I have read so far. I discovered Dennis' book on line and reached out to him yesterday. He suggested I check out this support group.
I was diagnosed with T-PLL in January this year. I am 55; female. I just finished my first cycle of Campath. On a week break before starting cycle 2. I am tolerating the meds well, after a severe reaction on day 1.
I will appreciate receiving more information re the disease and campath. Something positive would be great!
Everything sounds so complicated and confusing.
Thank you!
Lui Gabriel