ITP and LGL Leukemia

I have had ITP for over 10 years and have tried unsuccessfully many different treatments. Currently trying to get the correct dosage of Eltrombopag (Revolade in Canada; Promacta in US). This is my first post and is indirectly about ITP. I have also been diagnosed (Dec. 20th) with T Large Granular Lymphocyte (LGL) leukemia. It appears to be slowly growing at this time. It is common in those with autoimmune conditions. Anyone else with ITP have LGL leukemia?

No, I wouldn't say that it's common. Sometimes the treatments cause damage to the immune system which can elevate the risk for cancers/leukemia. I hope you can treat it successfully.

Hi! I came across your post while researching, and I realize it's been a few months since you posted. My husband also has both, and I was hoping we could chat. He's also had ITP almost ten years, that we know of, and was just diagnosed with T-LGL last year.

Thanks!
MB

Yes, I would like to chat. Not sure I have much insight, but we can compare notes.
Might be better to take it offline, will try and figure out how to do that.

Great. In the meantime, do you mind sharing what treatment you're on? He tried steroids as first line many years ago, and they failed. He had his spleen taken out and that seemed to do it for a long time. Then they were way down again, which we found on blood work for something else. He had another infusion of platelets and has been on NPlate. It works fairly well though his numbers bounce. When he's sick or has an infection they tank, but I suppose that's the autoimmune part. Now his hem/onc is insisting he switch to Promacta. We aren't sure why. Have you tried, either or both? We're concerned about these meds having an impact on the T-LGL.

I have always had a good, quick response to steroids, but hated the effects and didn't want to be on them long term. I have also tried Imuran, an immune suppressant that didn't work. I have tried Rituxan 3 times, which worked each time for 8-12 months. We have also tried the wait and watch route, but we watched as the platelets continued to drop to single digits. I have been on Eltombopag (Promacta) since October. I am Canadian and it is referred to as Revolade in Canada. We have had difficulty titrating the dosage. Too low a dosage and my platelets drop, too high and my platelets go up too high. They are currently (as of this week) 257, which I recall is too high when you are on a TPO agonist. I think the fear is a blood clot. I am waiting for the hemo to give me a call to discuss. I have also tried various naturopathic methods, include diet, with moderate success.
I was diagnosed with the LGL Leukemia in the fall of 2017. It is very indolent at this point; a wait and watch scenario. My lymphocytes are consistently high every time I get a CBC, but there are no other indicators at this point. My lymphocytes were high before I started the Eltrombopag, so I know that was not a factor.
The hemo. seems to think it is autoimmune related. Over the years I have had a couple of other autoimmune conditions that are now in remission.
The Eltrombopag (Promacta) is very easy to take. I do notice if I skip a day, I feel unwell, with an upset stomach the next day.
It is a good question of the meds. would impact the LGL. I have wondered if the Rituxan had an impact on my getting the LGL, but there is no way to tell.
BTW - tried to private message you, but I keep getting errors from the system.