I was diagnosed in about March, of 2023, and am in the watch and wait status. My blood is checked every three months. On my own I immediately started taking one turmeric and one Omega 3 in the morning and evening and every test so far of my blood has shown to be "normal". Don't know why that is but as long as they work I will keep on taking them. Have another blood draw on January 19, in the morning and will post the results. I asked him if I have inflammation of the thymus gland and he said no. He is not familiar with turmeric or omega 3, and I think they are keeping me alive. I will post the results of my blood draw and let you know.
@jumper123 I am going to an oncologist that is not a specialist in LGLL, and I will change to a different clinic that has a specialist and networks with the mayo clinic. The oncologist I have knows nothing about my condition, however I have been in contact with Dr. Loughran director of cancer research at UV, and am on his registry.
@jumper123 I've been diagnosed with T cell LGL. Seen two doctors, including a specialist in this issue at Memorials Sloan Kettering in NYC.
I also contacted Dr Loughran's office to inquire about an appt with him. They wanted a fee just to submit my data to him, and thereafter they would decide whether to reach out to me.
That is why I went to MSK. Can you tell me what you mean by being on Dr Loughran's registry please. I have a very good friend who say Dr Loughran around 2016 with our same issue when Loughran was at Hershey, PA. PS My friend is my age 83 and is doing well. Good news to us, I hope.
No, I am in the care of Dr. Shank, in Maplewood MN, and have been for 1.5 years with no improvement. Thinking of changing oncologist because I don't think methotrexate has a good effective rate and there are better first line drugs that I should of been given. Have another appointment for the 15th of July, for consultation.
@jumper123 I am going to an oncologist that is not a specialist in LGLL, and I will change to a different clinic that has a specialist and networks with the mayo clinic. The oncologist I have knows nothing about my condition, however I have been in contact with Dr. Loughran director of cancer research at UV, and am on his registry.
When i started going to the oncologist a couple of years ago I listed what I was taking and one was Turmeric one per day. When I changed to cytoxan I called the pharmacist and asked about the interaction between cytoxan and turmeric and there was none. However I developed blood spots below my skin on my left for-arm so I asked the doctor what I should use on it and was told cortison-10, and that took to long to heal them up. The nurse said, "the spots were caused by the disease" so I got on my computer and found that turmeric is a blood thinner so I stopped taking it and spots cleared up and in four months have not returned. You should not only be your own advocate you should be your own doctor too. I will inform the doctor at my next appointment. Turmeric, omega-3, and garlic supplements are all blood thinners according to what I read on my computer. Just sharing with you my experience.
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.
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
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.
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.
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.
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@jumper123 Hope your blood counts are still doing well. Did you have any long-term success with the turmeric supplements? How are you feeling?
@jumper123 I've been diagnosed with T cell LGL. Seen two doctors, including a specialist in this issue at Memorials Sloan Kettering in NYC.
I also contacted Dr Loughran's office to inquire about an appt with him. They wanted a fee just to submit my data to him, and thereafter they would decide whether to reach out to me.
That is why I went to MSK. Can you tell me what you mean by being on Dr Loughran's registry please. I have a very good friend who say Dr Loughran around 2016 with our same issue when Loughran was at Hershey, PA. PS My friend is my age 83 and is doing well. Good news to us, I hope.
@jumper123 I am going to an oncologist that is not a specialist in LGLL, and I will change to a different clinic that has a specialist and networks with the mayo clinic. The oncologist I have knows nothing about my condition, however I have been in contact with Dr. Loughran director of cancer research at UV, and am on his registry.
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1 ReactionDr Thomas Loughran is the "discoverer" of T cell LGL. He was previously at Hershey Medical center. Arguably the leading doctor for this .
https://uvahealth.com/findadoctor/THOMAS-LOUGHRAN-1932158615
When i started going to the oncologist a couple of years ago I listed what I was taking and one was Turmeric one per day. When I changed to cytoxan I called the pharmacist and asked about the interaction between cytoxan and turmeric and there was none. However I developed blood spots below my skin on my left for-arm so I asked the doctor what I should use on it and was told cortison-10, and that took to long to heal them up. The nurse said, "the spots were caused by the disease" so I got on my computer and found that turmeric is a blood thinner so I stopped taking it and spots cleared up and in four months have not returned. You should not only be your own advocate you should be your own doctor too. I will inform the doctor at my next appointment. Turmeric, omega-3, and garlic supplements are all blood thinners according to what I read on my computer. Just sharing with you my experience.
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Helpful -
Hug
2 ReactionsWell 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.
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Helpful -
Hug
1 ReactionNot 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
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Like -
Helpful -
Hug
2 ReactionsYour 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.
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Like -
Helpful -
Hug
1 ReactionI 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.
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Like -
Helpful -
Hug
2 Reactions@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.
-
Like -
Helpful -
Hug
2 Reactions