Back in July of 2017 Joseph from Turkey found us via this blog. He has been communicating with Bill via e-mail since. Joseph was diagnosed with T-PLL while living in Turkey. The treatment there is more traditional for Leukemia, they would not use Campath until the more traditional treatment failed. Joseph completed the traditional treatment with no success and was then given Campath. His WBC is 1.81 after a month or so on Campath. As we get information from Joseph we will update the blog with his journey.
On January 19, Joseph sent us a link to an article about a new treatment for T-PLL. Please use the link below to view the article.
https://www.news-medical.net/news/20171024/New-drug-offers-hope-for-treatment-of-aggressive-T-PLL-leukemia.aspx
We are happy to see that T-PLL is getting some attention with the drug manufacturers.
3 comments:
I have been recently diagnosed with T-PLL and I am in the "simmer stage" (WBC at 23K). I continue to research the websites for new clinical detail and have found the Venetoclax announcement from Austria. i also found that it was posted on the blog by Joseph.I expect a potential trial enrollment announcement in 2018 but it is unclear at this time which country the trial enrollees will be solicited from. I also reached out to Dr. Claire Deardon regarding any future potential trials. There is none currently but she did indicate they are hoping to have a potential trial for those that relapse. Her response came to me this week.
I am thankful to find this blog due to the rarity of the diagnosis.
As a clinician, I find the detail to be somewhat vague when defining the change from "simmer" to time begin the treatment. My physician indicated that a doubling of the WBC, in a short period, unintentional weight loss of 10 lbs, severe night sweats would be indication to begin the Campath treatment.It is somewhat disconcerting to continue to"wait".
Again, I am thankful to find this blog and thank you Bill for sharing your journey and starting this blog. Best, Laurie
I'm a T-PLL patient currently in watch and wait. Wondering how Joseph is doing?
thanks,
Susan nutini
Hi there,
Looking for Bill's next update! Fellow T-PLL'er here (watch and wait currently but I think that will change next year).
Regards,
susan nutini
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