Anyone out there have a T cell large granular lymphoma leukemia

The blog is not letting me send you my email address and yours disappeared

@beekindtobees and @paul1940, please see the Community Guidelines https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/

Mayo Clinic Connect is a public forum. To share personal contact information, it is better to use the secure private message function. I’d like to underline the benefit of sharing in the group discussions. By posting in the discussions in the group you benefit from the knowledge and experience of many members.

@beekindtobees and @paul1940, please see the Community Guidelines https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/

Mayo Clinic Connect is a public forum. To share personal contact information, it is better to use the secure private message function. I’d like to underline the benefit of sharing in the group discussions. By posting in the discussions in the group you benefit from the knowledge and experience of many members.

@colleenyoung thanks for the information. I just need to figure out how to find that private message function

I was diagnosed with LGL (T-cell, clonal) in 2007, which was picked up from a blood test for something else. I was 53. I have been on watch-and-wait ever since. Before my current hematologist, I saw 3 others (The changes were only due to logistics) who all agreed that watch-and-wait was the way to go.
I now see my hematologist about twice a year (it was more frequent in the beginning), who runs a CBC and discusses the results with me. He also does a routine physical exam, though he always points out that any change in my status will be picked up by the blood tests way before I have any physical symptoms.
Fortunately, my numbers (on the blood tests) have been pretty good throughout (minor variations are expected). In fact, very gradually, they have improved a little -- especially my neutrophil count, which was moderately low at first, but very gradually has improved over time to where it sometimes falls at the low end of normal. In the early years, I had a few minor fungal infections, which responded to standard meds, but it's been a long time now since I've had one.
I realize not everyone will be as fortunate as I've been, but I encourage those of you who are nervous about wait-and-watch to understand that it's an approach based on real scientific experience. In the early years, I thought a lot about my LGL: Should I tell my mother? How will I manage if I need chemo? If I go to the beach, will I pick up some infection from the ocean?
But over the years I learned to relax. Even when an appointment with the hematologist is coming up. I realized that going on the attack from the beginning is NOT always the best policy. If you see a couple of ants in your kitchen, you don't want to call an exterminator to fumigate the entire house, right?
As far as I know, there is no KNOWN factor that causes LGL. So you don't know if any medication, therapy, or lifestyle change will have a positive, negative, or null effect on your blood disease. In the meantime, the meds, therapy, or lifestyle change MIGHT have a negative effect on some other system in your body.
The time when I need treatment may come next month ... or never. It's the same with getting any other disease, or getting hit by a car, or getting struck by lightning, right?

I was diagnosed with LGL (T-cell, clonal) in 2007, which was picked up from a blood test for something else. I was 53. I have been on watch-and-wait ever since. Before my current hematologist, I saw 3 others (The changes were only due to logistics) who all agreed that watch-and-wait was the way to go.
I now see my hematologist about twice a year (it was more frequent in the beginning), who runs a CBC and discusses the results with me. He also does a routine physical exam, though he always points out that any change in my status will be picked up by the blood tests way before I have any physical symptoms.
Fortunately, my numbers (on the blood tests) have been pretty good throughout (minor variations are expected). In fact, very gradually, they have improved a little -- especially my neutrophil count, which was moderately low at first, but very gradually has improved over time to where it sometimes falls at the low end of normal. In the early years, I had a few minor fungal infections, which responded to standard meds, but it's been a long time now since I've had one.
I realize not everyone will be as fortunate as I've been, but I encourage those of you who are nervous about wait-and-watch to understand that it's an approach based on real scientific experience. In the early years, I thought a lot about my LGL: Should I tell my mother? How will I manage if I need chemo? If I go to the beach, will I pick up some infection from the ocean?
But over the years I learned to relax. Even when an appointment with the hematologist is coming up. I realized that going on the attack from the beginning is NOT always the best policy. If you see a couple of ants in your kitchen, you don't want to call an exterminator to fumigate the entire house, right?
As far as I know, there is no KNOWN factor that causes LGL. So you don't know if any medication, therapy, or lifestyle change will have a positive, negative, or null effect on your blood disease. In the meantime, the meds, therapy, or lifestyle change MIGHT have a negative effect on some other system in your body.
The time when I need treatment may come next month ... or never. It's the same with getting any other disease, or getting hit by a car, or getting struck by lightning, right?

Hi @dalefreeman, I like the way you think! Taking the non-knee jerk approach to things that pop up. Thank you for sharing your perspective on life with LGL. I’m happy for you that you’re in long-term active surveillance. It’s wonderful there’s been no change since your diagnosis in 2007. That gives hope to others with a similar diagnosis.
Your positive attitude is exemplary.

Loving the photo in your profile. Is that a young otter?

@loribmt
Hi Lori: Yes, it's a young sea otter -- one of my favorite critters. It's a good thing you asked, because I use different photos for different websites and sometimes I get mixed up about which is which. If you hadn't said the word "otter," I might've replied "No. It's my mother."
I'm glad some people have found my post helpful, encouraging, etc.
Thanks for you services as a Volunteer Mentor!
Dale