I am not a doctor, but I don't think your platelet count is low enough for treatment for your T cell LGL. Your quote is vague. What product are you talking about?
About three years ago I was diagnosed with LGLL, and currently don't take anything for it. My blood will be taken in February, and I hope to get something to take for my condition. My platelet count was 87, on my last blood draw. I do know the cause of my condition and informed my oncologist and a research director and was told "we don't do anything to get the product off the market we just try to treat the condition." How does a person get a product tested to see if the product does cause LGLL ?
@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.
@paul1940 Good morning! Glad to hear you and your friend are doing well. Unfortunately, I do have anemia, leukopenia, and neutropenia with low hemoglobin levels. The smoldering myeloma and Crohn's exacerbate the chronic infections. I am completely homebound and only leave the house when necessary (I use an N95 respirator). Thankfully, I have been able to keep bacterial infections that require antibiotics to a minimum. Most of the infections are viral and manageable at home. I do go into the infusion clinic for weekly IV hydration which helps tremendously.
@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.
@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.
@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?
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.
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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I am not a doctor, but I don't think your platelet count is low enough for treatment for your T cell LGL. Your quote is vague. What product are you talking about?
About three years ago I was diagnosed with LGLL, and currently don't take anything for it. My blood will be taken in February, and I hope to get something to take for my condition. My platelet count was 87, on my last blood draw. I do know the cause of my condition and informed my oncologist and a research director and was told "we don't do anything to get the product off the market we just try to treat the condition." How does a person get a product tested to see if the product does cause LGLL ?
@paul1940 Good morning! Glad to hear you and your friend are doing well. Unfortunately, I do have anemia, leukopenia, and neutropenia with low hemoglobin levels. The smoldering myeloma and Crohn's exacerbate the chronic infections. I am completely homebound and only leave the house when necessary (I use an N95 respirator). Thankfully, I have been able to keep bacterial infections that require antibiotics to a minimum. Most of the infections are viral and manageable at home. I do go into the infusion clinic for weekly IV hydration which helps tremendously.
@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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3 Reactions@paul1940 Good morning, Paul. Thank for replying. How are you feeling overall? Any fatigue or chronic infections?
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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@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@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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Like -
Helpful -
Hug
2 Reactions@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.
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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