Видео

Thank you for this break down, prayers out to you. I was just told last week i have Tcell LGL. This was only looked at because i had low neutrophils in my labs for the last 2 years. I appreciate the information so much

How are you now? May. 2024

Thank you for sharing 🥰🥰

Thanx for being strong and sharing

Hi Destiny!!! Thank you so much for sharing your story. I had my appointment yesterday at Cancer Center. I am a 24 year old ovarian cancer survivor. I was symptomatic with Lgl for years with chronic neutropenia. Have you found any research on diet or any additional daily activities to implement to fight our low WBC. You're amazing!!! Please keep sharing your journey!

I hope all is well with you sweetheart so beautiful and strong

I hope you're alive and well to this day please come back and continue to educate... my family is suffering with this and getting a diagnosis is extremely difficult

Can you please update us on how you are doing? My husband was just diagnosed with T Cell LGL and will be having bone marrow aspiration and biopsy on July 17.

Can I ask how they determined this? I have rare Large granular lymphocytes and am sitting here waiting on any type of diagnosis. I don’t have ANY faith in my doctor. I need to find a new doctor.

Praying for you. I also have finally been DX but am afraid it is a long journey for me. I have been very sick for a long time with night sweats and just not hungry to eat too much, and the Dr's act like this is hardly anything as I too look alright. My friends do not understand as they think I can still join in. I was an activities director and nurse and danced and raised my family and helped with grandchildren and now barely can do my housework and luckily we are retired and my husband helps me as he can. They have sent me to an Oncologist /Hematologist and they have found my White county way low and the Red count and then it goes up some, and then down as it does not stay stable. They are "watching and waiting" so it seems? Also, I happened to find the DX in my Patient Portal along with all else I have. I am in need of both hips and Right knee total Replacement and have hypertension and also hyperglycemia. So really awful and am 71 yrs old. I am very tired and have been a long time and hurt everywhere. I feel terrible for all you have gone through and with a family and just will pray thign do get better for you and they can turn this around!! The Mayo Clinic from what I have heard anyway * they are are not near me at all* but they are far ahead of many in this unusual leukemia. Thank you for your service! My husband was in the Navy.

Very informative @Mydestiny Hopkins. I agree that LGLL is likely underdiagnosed. It manifests across such a wide spectrum in terms of signs (e.g. abnormal labs), symptoms (+/- fatigue, pain weight loss, etc.), and associated medical conditions (+/- autoimmune diseases, other cancers, splenomegaly,. etc.) that the LGLL itself is not always recognized right away amidst the associated medical issues. I am a medical doctor as well as an LGLL patient (I have a 'My Cancer Journey' video on my channel as well for anyone who wants to see more about what life is like living with LGLL). It was significant fatigue and anemia that eventually led to my workup. Flow Cytometry and a TCR test (T-Cll Gene Rearrangement test) finally led to my LGLL diagnoses. These test are explained in a video I posted called 'What is Large Granular Lymphocytic Leukemia (LGLL).' I hope you don't mind that I mention it Remika. I hope to provide some helpful LGLL information particularly for laypeople, as you are doing as well. Thank you for that! How's your health Remika? I pray it's well. Please update us if you're able. God bless you and others with LGLL!

Thank you so much for sharing your story Remika @Mydestiny Hopkins. I related to what you said about being stereotyped based on how we look (although you said your diagnosis was stereotyped, I've experienced the status of my health being stereotyped based on how I look on the outside). I happen to be a physician, but I'm ALSO an LGLL patient. I too have posted videos on 'My Cancer Journey' and how I've applied nutrition to this leukemia with positive outcomes (my lymphocytes [the cancerous cell line] returned to normal range without medicine as did my neutrophils). But all my cellular lines have not corrected yet. It remains a work in progress. I also have a "What is LGLL' video posted. I hope others find your videos and mine as well. There isn't a lot of information about LGLL (not in laymen's terms anyway). How is your health now Remika? My prayers are with you and others with LGLL.

Any recent updates. No one talks about LGL

Mine was diagnosed with flow cytometry. I see a leukemia\lymphoma oncologist. No treatment it is chronic but told it can turn acute. Took 2 years to diagnose. All bloodwork is wonky.

I was just diagnosed with LGL Leukemia on December 15, 2021. I will pray for you and all the people in your comments!🙏

Tell it ... 😢 So true ... Just started methotrexate 11 weeks ago for LGL leukemia ... You are such an amazing, inspiration ... I'm still working, some days are hard, some are harder ... Anxiety and covid-19... I've had 4 blood transfusions sence June 21 ... I've survived around 26 operations for bilateral cleft lip and palate and this LGL has been difficult. One day at a time. Bless you.

Thanks for sharing (I was diagnosed with this two months ago and it's hard finding any information). How often do you need to get iron infusions, and how are you feeling now?

Any new updates on your health?

My heart goes out you!

Cytoxin if I spelled it right is what put my wife in remission

Moffitt cancer center Tampa has put my wife's LGL in remission

God Bless you and your journey

I'm late to the discussion (2- years) -- and I pray that Ramica (sp?) is doing well. I really enjoyed the video she did while thinking about getting out of her car. I was recently diagnosed with LGLL along with another blood cancer (MDS) -- I start Methotrxate treatment tomorrow, I recently introduced myself to Dr. Loughran -- and may me going down to UVA for testing. We'll see. I'd love to meet you Ramica, chat with you via text or email or even a phone call. Take care, my prayers go out to you. Brian Fey

Thank you for your posting on your cancer. How are you doing now?

How are you doing? I was diagnosed with LGL in 2009 at age 35. Was very sick for months before diagnosis. Went all natural, juicing and high nutrient diet. Got super healthy. Last time I went to doctor was in 2013 and my blood was NORMAL - no sign of disease.

How are you now? 2019sept. My sister and I are traveling to Mayo

If you quit eating grain all grains you might get better. Wheat is deadly. That means read every label of anything you eat or put on your body. Nothing artificial, color are flavor. No preservatives. No garbage foods. Dr Burg is great to watch on RUclips. He has different videos on lots of problems we get. Eat as natural as possible. My brother had this cancer but did not have good information . Good luck .

I was just diagnosed with this LGL and I had a mastectomy in March from breadt cancer I’ve been sick a long time. I don’t have many Ave. for treatment so they just tell me to live with it. I’m glad u put your story out there.

How are you now? Sept.2019

Thank you so much for sharing your story. Very helpful.

Do you have a Facebook? I'm Bina Brown on fb please add me if you do. Thank you!

I'm watching your video exactly one year from the date you posted! Currently trying to figure out what's wrong with me! Bless you! Thank you for your sevice!

Thank You!

No one knows or understands unless they have exactly what you have. In my prayers.

Thank you so very much for saying this. No one really understands LGL. I haven't been able to put it all into words as you did! I'm so grateful that you have shared this. Most people don't even believe you when you tell them you have cancer, leukemia. That its hard to cope and people think you are crazy because Doctors can't fix you. Diet can't fix me. But it would be nice to know that people would visit, call or even try to be a friend. It a lonely disease and it sucks so badly to be in pain and drs tell you to take some asprin or tylenol and blow your pain off! My feet and ankles kill me. My joints and my back take my breath away. My bones itch and when I scratch them I get hives that only last a hr or so before they disappear. But we still hang on. Do the best we can and try to have a fulfilling day. God bless you sweetie, I know what you are going through. It WILL get better then, there is eternity.

Thank you for your post, Remika. Fellow Air Force Vet. Recently diagnosed LGLL. Similar introduction and progression to this "condition".

Hi sis Plz can you text me your email add I was diagnosed with lgl last August I'm 48 years old x

Love you friend!! 😍😍

It’s always was good to learn about other rare diseases to appreciate the life you’ve got and share your disease and experience with it. Keep up the good work