The Leukemia & Lymphoma Society Community: Message List

Re: LGL Leukemia

communityreply@lls.org — Tue, 31 Jan 2012 20:23:45 GMT

Sorry to hear about your husband. Seems that we all have gone through the same thing. Because this disease is so rare, I have been diagnosed with many things - from Chronic Fatigue Syndrome to Lupus- before my diagnosis. I have been in treatment since April 2011. First tried Cyclosporine but it was toxic and didn't work. I'm now on Methotrexate. Started out with 7.5 mg once a week, now up to 15 mg once a week. My neutrophils are still pretty low, but a slight improvement (900 last week). I'm on Provigil for fatigue. Also doing a lot of research on natural/alternative treatments. Just started with Immunocal, and I'm already feeling much better. I am also juicing every day and eating only organic fruits and vegetables, wild caught fish, and hormone/antibiotic/steriod-free chicken. I do believe that keeping as many toxins out of my body will help to defeat this leukemia.

Hope you husband is feeling better. I will keep everyone updated on any successes that I find that work for me.

Sandra

Message was edited by: Michelle Rajotte

Re: LGL Leukemia

communityreply@lls.org — Tue, 31 Jan 2012 20:26:22 GMT

Hi Tinman. How are you feeling? Is your Methotrexate still working? Hope all is well.

Sandra

Re: Just starting treatment

communityreply@lls.org — Fri, 09 Dec 2011 18:11:50 GMT

Hi. I ran across your post today. I have LGL leukemia. How are you doing?

Re: can leukemia advance to myeloma?

communityreply@lls.org — Fri, 09 Dec 2011 18:03:33 GMT

I have a rare leukemia - LGL - and I also have 10% of my platelets that are Multiple Myeloma cells. The oncologist said that there is no way to keep me from going into full-blown MM, but that it may not happen until I am very old (I'm 63). It's pretty scary, because he really doesn't know because there have been no studies about this. I found a paper that said that LGL and MM have been seen together. So I don't know if ALL can turn into MM, but I do know that it is alongside my LGL. Good luck, and I hope this just a temporary anomaly for you.

Re: LGL Leukemia

communityreply@lls.org — Wed, 02 Nov 2011 06:14:33 GMT

Thank you for the articles Tinman. I start the Methotrexate tomorrow. Kinda scared - I have heard other people talk about all the side effects. How are you doing with the Methotrexate?

Stay strong.

Re: LGL Leukemia

communityreply@lls.org — Sat, 29 Oct 2011 07:50:40 GMT

Thanks, Tex.

Re: LGL Leukemia

communityreply@lls.org — Sat, 29 Oct 2011 07:49:49 GMT

Hi Tinman. How are you? The doctors now think I have had this since 2004 - that's the oldest blood test results I have and they show very low neutrophils and very high lymphocytes. I also have 10% multiple myeloma platelets. It's really frustrating to not be able to find any information about this kind of leukemia. Are you in treatment? We tried Cyclosporine but it was too toxic for my system and my neutrophils kept going up and down week after week. Next week I am to start on Methotrexate. I would love to hear what your experience has been with this disease.

I think I will sign up with the registry. One of my oncologists gave me Dr. Loughran's paper on "How I Treat LGL Leukemia". It's tough - everyone seems to react differently to this type of leukemia.

Be well,

Sandra

Re: T cell large granular lymphocytic leukemia

communityreply@lls.org — Sat, 29 Oct 2011 07:42:44 GMT

I was diagnosed with LGL in May. Are you in treatment?

LGL Leukemia

communityreply@lls.org — Thu, 27 Oct 2011 04:00:58 GMT

I have been diagnosed with Large Granular Lymphocytic Leukemia. Anyone else with this type of leukemia?