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Large granular lymphocytic leukemia (LGL) questions
I was dxed with LGL 1 1/2 years ago was on watch and wait even in remission for a short time. I was in the hospital not related to LGL my Hemoglobin was 9.7, my Hemocrit was 27.7 and my RBc was 3.04. Two weeks later I had labs done for my oncologist , my Hemoglobin was 8.9, my Hemocrit was 26.5 and my RBC 2. 72Now he wants me to start Rutoxan infusions and I am running scared. I am a 82 year old female. Any alternatives you have please let me know. Can labs drop that much that fast? Thank you
thank you.
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I have LGLL, now and feel pretty good but having a problem raising my white count and using cytoxan. In 2013, I had surgery for a Thymoma, that I didn't know I had and it grew to three pounds by the time is was detected and removed. I had gone to the same doctor for 58 years and had many physical but never had a chest x-ray because the doctor didn't have reason to x-ray me even though I complained about a cough each fall. When I went to a CVS, nurse she said I should get an x-ray then the doctor said I had lymphoma cancer and I should go to the hospital and there they determined I had a Thymoma, and not cancer. I survived that and two years ago I decided to coat my cement driveway with sealer and think I got some vapor in my body that caused the LGL.
Just FYI,
I have LGLL, and was getting reddish spots on my left for arm and it took weeks for the spots to go away. In talking to the pharmacist I asked him if Turmeric, could be taken with Cytoxan and he said there was no problem with that so I did my own research with my computer and found that Turmeric is a blood thinner so I stopped taking it and have no more reddish blood spots beneath my skin on my left for arm. If you have the same problem and you take supplements such as turmeric, fish oil, or garlic they are blood thinners and could be the cause of the problem.
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1 ReactionI have been diagnosed with T Cell LGL. I would like to view posts on the subject. Many thanks
Hi @paul1940, I found several posts for you with members sharing their T Cell LGL experiences. You’ve seen some of replies from members such as @dburkert @marlow2 @jumper123 in this conversation.
I also found this one which is relevant from the same members:
~T-Cell Large granulocytic Leukemia https://connect.mayoclinic.org/discussion/t-cell-large-granulocytic-leukemia/
Here is a list of the complete search where you can scroll through the findings: https://connect.mayoclinic.org/search/?search=T+Cell+LGL
Was this a recent diagnosis for you? Has your doctor suggested any specific treatment?
Hello Lori, Many thanks for reaching out. I get semiannual blood tests because I am taking Simvastatin. A year ago I paid more attention to my low RBC count and red blood cell abnormalities. MCV and MCH. My cardiologist was not concerned. I was, and found a local oncologist/hematologist in my area. Blood tests in December and a follow up in July this year with a definitive diagnosis of T cell LGL. I have a best friend who was diagnosed with this in 2013 and went to Dr Thomas P Loughran, then at Hershey. MY friend has shared his blood work with me. We have differences. But same diagnosis. By blood chemistry indicates no treatment necessary at this point.
I am 84 year old and am very active at the gym 30 minutes on elliptical, weights and stretching. I have no symptoms and feel well. My friend Jim went on low dose methotrexate in 2011 for a year, prednisone for the following year and Leukeran for the third year. All did little. Since 2013 no treatments. He is still alive and well at 82. I have extensive blood work and would be happy to share if this is allowed.
Dr Loughran is considered at discoverer of this disease and is a renowned expert.
https://uvahealth.com/findadoctor/THOMAS-LOUGHRAN-1932158615?utm_source=pressganey&utm_medium=listings
Hi Paul, Interesting that you and your friend both share a similar diagnosis, though years apart. He blazed the trail for you and probably gives you some peace of mind that this is a disease that can be considered chronic in some cases. I’m glad to see that he’s alive and healthy after 14 years. That’s wonderful!
You seem to be following a similar path. People can have some blood conditions and blood cancers years before they’re ever discovered because many develop very slowly over time. If you’re 84, with no symptoms or requiring any treatment at this time, I’d say just carry on with what you’re doing and put this in the back of your mind. Your doctor will continue with routine blood work that will pick up any changes, should they happen. Outside of the knowledge that you do have a diagnosis, basically nothing else has changed for you. So full speed ahead!
How often do you have labs now?
Thank you for your encouraging words, Lori. Re your question: Dr wants blood draws every three months. This is fine with me. I am charting my various CBC panel factors that specifically relate to Tcell LGL. And cross comparing with friends historical tract record.