Thioguanine

My beautiful brave daughter has endured treatment for acute lymphoblastic leukaemia, only to now be told that she has sustained long term liver damage caused by my forcing her to take her disgusting thioguanine medicine. I am completely gutted at this new turn of events, and would much appreciate hearing from anyone in a similar position.

I know your message was posted over a year ago, but I just joined this board. I was wondering how your daughter is doing? My son had liver issues from his 6TG also but we were told he will recover completely. What has your experience been in the past year?

Hello! Sorry to here about your son. My daughter has had a rather rotten year-she relapsed on 31st of May last year, 18 months after the end of her treatment, which was completely devastating. The good news being that a recent scan has shown that all her recent chemo hasnt effected her liver, and that it should heal its self over time. Her main problem now,(other than yet another 18 months of maintenance treatment,)is that her spleen is enlarged due to her liver damage, which complicates things as it keeps eating her platelets!
Has your son's spleen been effected by his liver problems?

No, I think his spleen had no damage. He had a reversed flow to his liver in his portal vein, and other symptoms of early VOD. This can be fatal in severe cases, I'm sure you know. It was very scary for a few days but he got better. He had 7 units of platelets and rbc. So sorry to hear about your daughter relapsing. Where do you go for treatment and how old is your daughter? We are supposed to start LTM tomorrow if his counts are high enough. He is 4 and we go to Charlotte.

Hi. My daughter, Jordie, is 9. She has been having treatments now for half her life-having first been diagnosed with ALL in 2001, just after her 5th birthday. We had all her origonal treatment locally in Northampton,(in the U.K) but second time round spent the first few months up in Birmingham-an hour up the motorway, which was difficult as I also have a 14 and 16 yr old, who like me to run round after them!
Fortunately now all her treatment is local again, which makes life a lot easier. Today I received her blood count results, and her platelets are a record 149!-almost worth the horrendous side effects of her recent dose of steroids!
You will have to explain LTM for me-its not a term I know.
How is he coping? 4 is so young to go through all this trauma.