Leukemia diagnosis

Hi @dominic74. I’d like to welcome you, along with @saga2 to Mayo Clinic Connect. Both of you have been diagnosed with T-cell prolymphocytic leukemia (T-PLL), which is an extremely rare blood cancer characterized by the out-of-control growth of mature T cells. Since there isn’t a great deal of information about this disease it can pretty unnerving not knowing anyone else with the same diagnosis. So I thought it would be helpful to ‘connect’ you with each other!

What were the symptoms that led to your diagnosis? Are either of you currently in a treatment plan? If so, what are the meds being used?

@loribmt

Hi Dominic and Lori!
I was diagnosed with T-PLL in August during my preoperative test when I was scheduled to have surgery. It appears that my WBC had been rising since January 2025.
I had my surgery a month ago and have been sleeping more than usual. But I haven’t had any other symptoms.
I read that this disease is aggressive and morality is about two years. This is scary and I don’t know what to expect.
What is your experience with this disease? How are you holding up?
Warmly, Sheila

@dominic74
Hello and thank you for contacting me and @saga 2.
My T-PLL was discovered through a series of routine blood tests stating late 2023.
WBC elevated and MD’s were unsure of cause. Bone marrow and CT scan confirmed diagnosis.
To date I have no discernible symptoms and I am not on a treatment plan.
My platelet count is causing more concerns from MD that WBC but still not enough concern to lobby for treatment.
A drug protocol CAMPATH has been discussed.
My age is 74.
I would be interested to hear from or speak with @saga2 to compare situation.

Hi Dominic,
In case you missed my previous message.

I was diagnosed with T-PLL in August during my preoperative test when I was scheduled to have surgery. It appears that my WBC had been rising since January 2025.
I had my surgery a month ago and have been sleeping more than usual. But I haven’t had any other symptoms.
I read that this disease is aggressive and morality is about two years. I am 71 years old. I am seeing my Hematologist tomorrow . So I hope to get some answers to my questions.
Warmly, Sheila

Good morning, Sheila @saga2 It’s so darned scary when we get a diagnosis that is life altering. I’ve been there myself and it was like a gut-punch, catching me completely off-guard and as my mom used to say, ‘knocked me for a loop’.

Blood cancers can be so sneaky because generally people don’t have any symptoms early in the game, often finding out by happenstance when they’re getting pre-op blood work or labs from routine annual physicals. As you did.

I see you had a hematologist appointment a couple of days ago. Were you able to get some answers as to treatment?

@loribmt
Hi,Lori! It was a great meeting. I am stable. My doctor last words were: “Don’t live in a Bubble. Live your life! I will tell you when things change.”
It felt a weight lift from my shoulders. This news helped my husband have less anxiety about my situation. Thank you so much for asking!!
Warmly, Sheila

@saga2 Good morning, Sheila! What a huge sigh of relief for you and what a lovely doctor you have. Those words of wisdom, “Don’t live in a Bubble. Live your life! “ are such sage advice…and permission to get on with your life!
This liberation is such a lovely gift for you and your husband coming into the Thanksgiving holiday.
Thank you for sharing the good news. 💞

❤️