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.
@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.
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.
Hi @salma5k, Welcome to Mayo Connect. It’s great to have you here! Would you like to share a little more about yourself? Since you popped into the Blood Cancers & Disorders support group, have you or a loved one been diagnosed with leukemia or lymphoma?
Hi @salma5k, Welcome to Mayo Connect. It’s great to have you here! Would you like to share a little more about yourself? Since you popped into the Blood Cancers & Disorders support group, have you or a loved one been diagnosed with leukemia or lymphoma?
@loribmt Thank you for the warm welcome! I am a 50-year old woman that was diagnosed with Smoldering Myeloma in December of 2010 and T-cell Large Granular Lymphocytic Leukemia in March of 2019. I am looking to connect with cancer patients in general, but particularly with those diagnosed with TLGL.
@loribmt Thank you for the warm welcome! I am a 50-year old woman that was diagnosed with Smoldering Myeloma in December of 2010 and T-cell Large Granular Lymphocytic Leukemia in March of 2019. I am looking to connect with cancer patients in general, but particularly with those diagnosed with TLGL.
@salma5k You’ve come to the right place then! There are several members in this group with LGL. If you’ve read though this discussion from the beginning then you’ve been introduced with @dburkert@jumper123@marlow2 and others. Feel free to tag members to ask questions and have a chat. It can be so helpful being able to talk with someone who has walked the walk!
Since you’ve also been diagnosied with smoldering myeloma, a quick search brought up the relevent discussions for you regarding SM. https://connect.mayoclinic.org/search/
How have you been coping with both diagnoses? Have you undergone treatments for either condition or in an active surveillance phase?
@loribmt Thank you for the warm welcome! I am a 50-year old woman that was diagnosed with Smoldering Myeloma in December of 2010 and T-cell Large Granular Lymphocytic Leukemia in March of 2019. I am looking to connect with cancer patients in general, but particularly with those diagnosed with TLGL.
@salma5k You’ve come to the right place then! There are several members in this group with LGL. If you’ve read though this discussion from the beginning then you’ve been introduced with @dburkert@jumper123@marlow2 and others. Feel free to tag members to ask questions and have a chat. It can be so helpful being able to talk with someone who has walked the walk!
Since you’ve also been diagnosied with smoldering myeloma, a quick search brought up the relevent discussions for you regarding SM. https://connect.mayoclinic.org/search/
How have you been coping with both diagnoses? Have you undergone treatments for either condition or in an active surveillance phase?
@loribmt It's been a bit tumultuous as I am also trying to wield Crohn's disease. Thus far, no treatment for the Smoldering Myeloma or the TLGL, but I surmise that may be changing in the near future. I do my best to stay positive and maintain an optimistic disposition. Although I must admit, I am not as successful as I would like to be.
@salma5k Hello. I have no symptoms. This was only detected on semi annual blood tests with abnormal CBC panel. RBC, Platelets and hemoglobin are normal but border line low. Neutrophils are still in range. I couldn't believe my diagnosis since I feel fine. Gym every other day. Very active. I have a friend who is my age, diagnosed with Tcell LGL 2016 with abnormal CBC. He is still active and very much alive. Good news. And I hope for you.
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@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 Reaction@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 Hope your blood counts are still doing well. Did you have any long-term success with the turmeric supplements? How are you feeling?
Hi @salma5k, Welcome to Mayo Connect. It’s great to have you here! Would you like to share a little more about yourself? Since you popped into the Blood Cancers & Disorders support group, have you or a loved one been diagnosed with leukemia or lymphoma?
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1 Reaction@loribmt Thank you for the warm welcome! I am a 50-year old woman that was diagnosed with Smoldering Myeloma in December of 2010 and T-cell Large Granular Lymphocytic Leukemia in March of 2019. I am looking to connect with cancer patients in general, but particularly with those diagnosed with TLGL.
@salma5k You’ve come to the right place then! There are several members in this group with LGL. If you’ve read though this discussion from the beginning then you’ve been introduced with @dburkert @jumper123 @marlow2 and others. Feel free to tag members to ask questions and have a chat. It can be so helpful being able to talk with someone who has walked the walk!
Since you’ve also been diagnosied with smoldering myeloma, a quick search brought up the relevent discussions for you regarding SM.
https://connect.mayoclinic.org/search/
How have you been coping with both diagnoses? Have you undergone treatments for either condition or in an active surveillance phase?
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1 Reaction@salma5k I am Paul Burkhart and have Tcell LGL. My blood chemistry is not to bad and treatment is not necessary yet.
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2 Reactions@loribmt It's been a bit tumultuous as I am also trying to wield Crohn's disease. Thus far, no treatment for the Smoldering Myeloma or the TLGL, but I surmise that may be changing in the near future. I do my best to stay positive and maintain an optimistic disposition. Although I must admit, I am not as successful as I would like to be.
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2 Reactions@paul1940 Good morning, Paul. Thank for replying. How are you feeling overall? Any fatigue or chronic infections?
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1 Reaction@salma5k Hello. I have no symptoms. This was only detected on semi annual blood tests with abnormal CBC panel. RBC, Platelets and hemoglobin are normal but border line low. Neutrophils are still in range. I couldn't believe my diagnosis since I feel fine. Gym every other day. Very active. I have a friend who is my age, diagnosed with Tcell LGL 2016 with abnormal CBC. He is still active and very much alive. Good news. And I hope for you.
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Helpful -
Hug
3 Reactions