Hi my Mum was diagnosed with TPLL last month, we are looking for any info possible. Many thanks.
Sheryl
Tpll: Hi my Mum was diagnosed with TPLL last... - Leukaemia CARE
Tpll
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Sherul
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Hi Sherul,
I hope we can help, but I must admit I had to look it up, and do recall meeting one patient with PLL in the infusion clinic a long time ago.
From your word choices I assume you are in the UK. Is your Mum seeing a Leukemia specialist at one of the major research centers. (I'm in the USA, so not very familiar with those).
A quick Google search turns up MacMillian, UK Markey and Royal Mardsen as hospitals that do research & trials in TPLL. And this list of UK support services:
google.com/search?newwindow...
T-cell prolymphocytic leukemia - Wikipedia
en.wikipedia.org/wiki/T-cel...
T-cell-prolymphocytic leukemia (T-PLL) is a mature T-cell leukemia with aggressive behavior and predilection for blood, bone marrow, lymph nodes, liver, spleen, and skin involvement. T-PLL is a very rare leukemia, primarily affecting adults over the age of 30.
Len
LCNurse2ModeratorLeukaemiaCARE Nurse
Hi Sheryl,
I'm sorry to hear about your Mum's diagnosis. Although I can't give specific information for you mum as everyone will have individual treatment plans, here is some general information about TPLL.
TPLL is a rare sub-type of acute myeloid leukaemia (AML). When someone has APML the bone marrow is not able to make enough normal blood cells. The standard first line treatment for APML is generally All-trans-retinoic -acid (ATRA) which is similar to vitamin A, and anthracyclines (anthracyclines are a group of chemotherapy drugs)
ATRA blocks the effects of the PML-RARA gene. When the abnormal gene is blocked the cells continue to develop – this is called differentiation. ATRA and Anthracyclines may be given at the same time (normally if you have a high white blood cell count at the time of diagnosis), or the Anthracyclines may be introduced a few days after the treatment with ATRA is started. ATRA is usually given in the form of tablets, while Anthracyclines are given intravenously (directly into a vein).
Second line treatment is used for patients who haven’t gone into remission or who have relapsed. This treatment is usually a combination of ATRA and arsenic trioxide (ATO). ATO is also sometimes used in first line treatment if the patient is not suitable for chemotherapy. It is also sometimes used in clinical trials.
Treatment also involves blood and platelet transfusion, along with plasma. Platelet counts are kept higher with platelet transfusion in APL compared to other AMLs.
Hope this is helpful,
The Leukaemia Care Nurse
Sorry to hear about your mums diagnosis. I was diagnosed with BPLL a couple of weeks ago and I’m taking ibrutinib. I’ve only been taking it for a week so don’t really know if it’s working yet. Is your mum having treatment? Take care. Cindy.
