Large granular lymphocytic leukemia (LGL) questions

Wanted to say after reading the side effects of this infusion I sure don't want it, I live alone, and I am really frightened and depressed over the thought of this. Right now, I take script vitamin B 12 and Folic Acid,

Welcome to Connect @linepa2002. Oh golly, I know exactly the feelings you’re having when facing a rapid change in your health and being presented with a treatment option that comes with a black box warning. Been there, done that…bought the shirt. 😊
I’m on the road right now for two days and can’t use my computer to get you the information about your LGL diagnosis. Maybe other members will pop into the discussion. However, I can answer your question about blood work. Yes, blood numbers can change rapidly. So your hematologist is wanting to act quickly to help stop a progression with Rituxan (Rituximab) infusions. Believe me, I wasn’t keen on having them either after reading the info.
The infusions were like a wonder drug. The only reaction I had was during the first infusion. I was told it’s very common. You won’t be alone, the nurses are right there with Benadryl or steroid that is put in the IV at the same time. There were no after effects…just restoration to good health.
The first infusion could take a couple hours as it’s given very slowly. Take a book, iPad, snacks along. Though most infusion centers have snacks, water and juice. You’ll be able to get up and walk around and visit during the infusion too…the IV carts are mobile.
Do you have a friend or relative who could keep you company for a few hours?

I am 77 yrs old and in about March 2023, was diagnosed with Large granular leukemia. Am in a "wait and watch" status. Have been taking turmeric and omega 3. which has helped me in keeping my blood numbers normal. Has anyone else had good luck with using turmeric or omega 3 in treating this type of blood cancer? I feel the blood cancer was caused by using a cement driveway sealer on my driveway due to the vapor does anyone know where to report the cause to?

I have been diagnosed with LGL, and am 77 years old and I am on "wait and watch" however I don't like that so when I left his office after my first appointment I purchased a contain of Turmeric extract, and another one of omega -3, Took one of each in the morning and the same in the evening and have had two blood tests since then and my numbers are normal. The oncologist knows nothing about either product, however, if the products work at keeping my numbers normal I will keep on taking them. I got LGL, I am sure from the driveway sealer OKON, made my Rust O'leum, somehow the vapor got through or around my mask and the oncologist does not believe me. It is a petroleum product and I followed the instruction perfectly however a sprayer should not be used as instruction recommend.

Good morning, @jumper123. Kudos for taking every precaution for avoiding injury while using that product for sealing your driveway. Longterm exposure to some of these chemicals can be linked with cancers. Whether or not this one-time exposure caused your LGL may never be fully proven but I understand your feeling that this may be linked. I tried to correlate events with my diagnosis too. It’s something I’ll never know for sure…but knowing wouldn’t change the fact that I still had leukemia. So dealing with it becomes the goal, right?

What’s impressive is your change in blood results with taking the turmeric and omega 3 supplements. It’s encouraging to see these positive results. Both products are so beneficial in reducing inflammation.

I’m sure you’ve been reading all you can on LGL but I thought I’d toss in another article for you that shows the different types of LGL and potential treatments. However, with your success, you may not need it! ☺️

When you were diagnosed did you find out whether T-cells or NK-cells were involved with your LGL?

I found out it was T-cells, and I am wondering if I should go to the mayo clinic for a second opinion to see if they would use the same strategy. The U of M, Masonic cancer center has no specialist in LGL so I am just seeing an oncologist that feels he can handle the problem. In 2013, I had a thymoma tumor removed and the spot in my chest may of been sensitive to vapor and caused the LGL so that is a possibility. I am sure it was caused by the vapor of the product somehow. Wish you the best. Don

Don, it never hurts to get a second opinion. I wouldn’t be alive without the amazing doctors at Mayo, so of course, I’m a little biased. ☺️

If you’d like to request an appointment at Mayo Clinic, here is a link to get you started. http://mayocl.in/1mtmR63

This takes you to their home page where you can follow the prompts for a new patient. You can select the campus most convenient for you and place the call. The coordinator who answers will be able to give you all the information you need.

If for nothing else a second opinion with a specialist will give you peace of mind…what do you think?

I have an appointment with my oncologist on Jan 19th, and will wait and see what he says before making an appointment at the Mayo. I know the doctors at the Mayo, have more experience than he does with LGL, although he did diagnose it. Will think about it after the 19th. I did give my oncologist the name of a specialist at the Mayo, if he wanted to consult with him (Dr. Norokowski).

Dear @jumper123 from which time you diagnosed?

I was hospitalized with COVID Pneumonia in December of 2021. I developed a Thymona shortly afterwards. In March of 2022, I was also diagnosed with t Cell LGL. Was on Methotrexate for 14 months and it did not improve my blood count. I tried Cyclosporine for about 6 weeks and couldn't deal with the side effects. I am on no chemo dru at this time. My Neutrophils are only .2 I think that COVID caused my Thymoma and T Cell LGL.