T cell large granulocytic leukemia

I would like to participate in this study of LGL, and will talk to my oncologist about it and feel I do know the cause of my LGL. Just feel that the Mayo clinic would be doing research on the subject too and they are closer to me since I live in Minnesota. I they are doing research on this at the Mayo, please let me know.

@jumper123, to learn about clinical trials available at Mayo Clinic, you can contact:
CANCER-RELATED CLINICAL STUDIES QUESTIONS
https://www.mayo.edu/research/clinical-trials
Phone: 855-776-0015 (toll-free)
Contact form https://www.mayo.edu/research/forms/cancer-clinical-trials

Or search the database here: https://www.mayo.edu/research/clinical-trials

I have Large granular lymphocyte Leukemia, and was told by my oncologist that I would get a new medication since methotrexate shows no improvement. Have not received a new prescription in a week and will call his office today. Usually a person is prescribed cyclosporine, and he wanted to consult his group to see what they recommend. I am in the LGL registry with Dr. Loughran, at the university of Virginia, the researcher that discovered Lgl. He said the oncologist can consult him if needed and he has not done that yet. Dr. Loughran is also on My Chart, reviewing my test results and treatment. I am part of the study group at UV. Hope I get a new prescription today and will call there this morning.

@jumper123
Don’t be afraid to be that squeaky wheel and call to nag about that prescription. People get busy and important things fall between the cracks. We trust our physicians but we must verify that our care is correct and timely.
I’m glad you have Dr Loughran on your team. If you don’t believe you are getting what you need from your hematologist there is nothing wrong with asking for a second opinion.

I really don’t want to jump in on this site but my husband’s doctor told us he is watching his blood work closely for Lgl and really didn’t say much else but that he drew a lot of blood yesterday to help him determine. Ok this is alarming to me and of course I Dr.Googled it and yes that made me worry more. So the waiting starts. BUT he is 18 months out from his bone marrow transplant for MDS and has been feeling very well so we have been trying to get back to some kind of normal. We were just getting to return to office on a monthly basis and now back to weekly. Just a LOT worried about what is next.

Your husband is post transplant? Did he have lgl previous?
My husband has MDS too and we are in pretransplant testing. He was diagnosed with lgl as sort of an underlying condition in 2019. Was so hoping the transplant process would eliminate that too.

Not that I know of. No he had MGUS which I read in his notes prior to transplant but this is the first I’ve heard of Lgl. I don’t know enough about either and wonder if they have some similarities. I will have to ask some more questions. And this is still undetermined as to how it all is connected. Hoping next weeks lab will give us more answers. I don’t know how to answer but would hope his transplant would take care of this as well for him. Prayers to you the caregiver stay strong

Well his lab work was better and it was a different dr so didn’t ask the questions I wanted. When I said last week his was concerned about all he only said labs are better this week and see you in a month. This dr has only been with the practice maybe 4 months and doesn’t really know my husband as well as the other two. So since my husband feels so good I am not going to press it to much at this point with this Dr. I will address it when we get to see our original Dr. thanks for the hugs. Hope things are going well in your process.