T cell leukemia

[Mom-mom-e]

Just diagnosed with T cell leukemia, I do not have a subtype yet.

Any other T cell types out there?

[Jm954 Administrator]

Hi there,

did they say what sort of T cell leukaemia it was? There are a few types and the treatment is different from that used for B cell CLL. The T cell leukaemias all have different prognosis and some are more chronic than others.

Let us know and we will try to help.

Jackie

[Mom-mom-e in reply to Jm954]

Thanks so much for your quick reply. My Mom had CLL so I have been followed for 3 years for modest incremental lymphocyte increases. FISH and flow cytometry were negative. T cell clonality was neg 2 years ago. ALC is now 32,000 and now I have T cell receptor beta gene rearrangement.

I have a sit down in 3 weeks with the Hematologist, so I do not have a subtype yet. I was just wondering what else is involved in diagnosis and what questions I need to ask.

[Jm954 Administrator in reply to Mom-mom-e]

TCR gene re arrangement studies are the main way of testing for clonality in T cells. Good that you're waiting 3 weeks so it can't be anything very acute.

Let us know what he says and we'll look forward to hearing from you.

Jackie

[lankisterguy Volunteer]

Hi Mom-mom-e,

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I see you just joined us today-

welcome to the club that non of us wanted to join. Although the majority of us have CLL or SLL, there are several members with other T-cell Leukemias and Lymphomas. I recall several members with T-PLL

I hope some will reply to your request.

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In the interim the Lymphoma Researd Foundation and American Cancer Society has some information you may want to read.

lymphoma.org/aboutlymphoma/...

lymphoma.org/aboutlymphoma/...

cancer.org/cancer/non-hodgk...

cancer.net/cancer-types/leu...

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Unfortunately with several of the NHLs and other blood cancers it takes a long time for the doctors to sort out exactly which of the sub types are involved. CTCL, Sezary Syndrome and Mycosis Fungoides can take several years to differentiate.

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Len

[Mom-mom-e in reply to lankisterguy]

I do not have a subtype yet.... Honestly I am relieved to put a name to an abnormal finding. Previous testing was negative

[Huey01]

Have you been diagnosed with T cell prolymphocytic leukaemia? That was my husband's diagnosis before he passed away. Unfortunately whenever I tried to get any answers from this site I was told this was just for CLL and BLL. I wish you well.

[Mom-mom-e in reply to Huey01]

I am sorry for the loss of your husband. I just got the results of T cell receptor bets gene rearrangement, so T cell clonality, but do not have a subtype yet. My Lymphocyte count started rising in 2017 but labs were neg for cancer., until the positive T cell. I should know something more in a few weeks.

How long was your husband sick? My mother had CLL for 5 years before she passed away.

[Huey01 in reply to Mom-mom-e]

My husband was diagnosed quite by accident when he had blood work for another unrelated procedure. He was on watch and wait for 10 months with no symptoms but regular blood work and scans. Once he started showing symptoms he began chemo treatment which was unsuccessful and he passed away within 5 months. His was a very rare and aggressive type of disease.

[Mom-mom-e]

Thank you for your reply... I am saddened that his disease was so aggressive, and he lost his battle so quickly. I am so sorry for your terrible loss. I am awaiting further testing to learn the subtype of t cell