Information about t-cell prolymphocytic leukemia

June 6, 2019 12:59 PM

My father has suddenly been diagnosed with t-cell prolymphocytic leukemia. They are considering treating him with alemtuzumab. I am pretty much at a loss here.He's asked me to find recent research about this to read. (I have friends with university library access so assume I can access anything paywalled.) I don't have enough knowledge, or, honestly, brainpower, to find things right now.

The hematologist said that the things we can find are not really the latest research on this, that he's had patients live a number of years but he's not had very many of them. Apparently there is a disagreement about whether or not to even treat him at first or watch and wait? I can't tell what the side effects really are, or if treatment this early does much.

He's 70, in good health otherwise, and was diagnosed by chance as he is asymptomatic. (Other than a bad level of white blood cells.)

Please send me recent research links, or anything else I might find useful, for my father, my mother, me, and the rest of the family.

posted by sockingjay to Health & Fitness (7 answers total)

I'd suggest searching at smartpatients.com. This website has different groups for different diseases, and I've found it very useful for dealing with my own cancer. Patients can point you to resources and will also share their own treatment experience. I've found this absolutely invaluable (for instance, after months of getting nowhere with my oncologist in regard to a certain side effect, I was able to find a medication that helped through others' posts on smartpatients). I can't speak to exactly what you will find for this diagnosis, but I can tell you that patients often really come through in terms of knowing the best resources for information.

To look at the most recent research, go to PubMed and search on the disease name.

If at all possible, get a second opinion. And if you can, make sure the oncologist your father is seeing is a specialist in this specific disease. For my cancer, statistics show that centers that see the most patients with this specific cancer have the highest survival rates.

I'm sorry you're dealing with this. Best wishes to you and your family.
posted by FencingGal at 1:17 PM on June 6, 2019

Here's an article from PubMed about T-PLL, published in March. I wonder if the hematologist's comment about not being able to find the latest research was referring to the lag time between clinical research activity and publication of results; for example, the trial referred to in the article concluded in 2014, but the results didn't get published until 2019. You might have better luck browsing the National Library of Medicine's database of clinical trials; here's the list for T-PLL, and you can limit on the left by trials that are completed, active, or not yet recruiting.
posted by stellaluna at 1:17 PM on June 6, 2019

Hi, I only have a few minutes, but here are two articles and some info about treatment.

The dawn of a new era in treating T-PLL

High remission rate in T-cell prolymphocytic leukemia with CAMPATH-1H

Alemtuzumab (Campath, I think).
posted by Riverine at 1:35 PM on June 6, 2019

T-cell prolymphocytic leukemia (Leukemia & Lymphoma Society - Get Personalized Info & Support at 1-800-955-4572, or by live chat or email)

Since T-PLL is rare, it is important that an experienced hematopathologist examine and interpret the patient's lab results. A hematopathologist is a doctor who specializes in examining tissue and diagnosing disease.

posted by Little Dawn at 2:46 PM on June 6, 2019

sockingjay, My wife had T-cell PLL ten (no, 11) years ago and she was very symptomatic when diagnosed. It is an extraordinarily rare leukemia and there haven't been many trials (and the few that have been conducted had small numbers of participants) so the treatments from a decade ago are essentially the same now: alemtuzumab (Campath) +/- pentostatin (Nipent).

I read a good review article recently and I'll find the link and send it to you. If you have any questions please memail me, I'd be happy to share my experience.

Wishing you and your family well.
posted by codex99 at 3:01 PM on June 6, 2019 [2 favorites]

Here's the recent review:

Larabi, et. al. Advances in the understanding and management of T-cell prolymphocytic leukemia

This is as good and current as anything I've read.
posted by codex99 at 3:08 PM on June 6, 2019

Response by poster: For whatever it's worth, we're in Canada, not the US.
posted by sockingjay at 5:55 AM on June 7, 2019