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..


Anonymous said...

Well, I guess I am part of this elite group. I was diagnosed a year ago February and have been under wait and see. Now I am going to start the Campath therapy and hope the results are as good as your husband's.

In 23 years my doctor has seen on one other T-PLL sufferer.

I wish us all good luck.

T-PLLWife said...

Welcome to the blog! So you went one full year before starting treatment? My husband probably had the disease for a year as well before he was treated. When first diagnosed in December his wbc was already at 29,000 and I am sure it had been climbing for a few months before that time. When he received his first injection of Campath the wbc had climbed up past the 200k mark and he was then quite ill.

Will you receive the Campath IV or Sub-q? Sub-q is considered 'off label' as FDA approved by the drug company yet is documented in several trials and the like as a good alternative. Either way Campath seems to be the drug of choice for T-PLL.

I am not surprised to hear that your doctor had only seen one other case. At least he/she had seen it before as many have not and therefore may prescribe the wrong treatment.

I would recommend you also contact the drug company as they offer a CamCare phone line staffed 24x7 by experienced nurses. This was and continues to be a real plus for me as you can pretty much ask them anything and they will provide information. They even send you a nice welcome kit with a thermometer, booklet to track your treatments and ice pack. The URL is

I would like to keep in touch with you as you go through your treatments but do not have your email address. So if you want to email me directly go to the main page of the blog and click on "Contact us by email" on the right hand side of the page.

Keeping you in my thoughts & prayers!!

Suzanne said...

Hello.. Would you like to blog?