Hi new here

Hi, I’m also new - so I have no advice to give, but if you want to talk to someone in a similar situation I’m here. I don’t know what TPLL is specifically - but my husband has also been recently diagnosed and started chemo yesterday for AML xx

Hi thanks for the reply. How did things go for your husband? Is he having it as an out patient? My partner was exhausted afterwards but he had been at the hospital for 6hrs so I think that and the stress of the day contributed to how tired he felt xxx

Hi,

They are keeping him in for the first round of treatment, so they’ve told us he’ll be in at least four weeks. So far he’s feeling ok, but I think he’s anxious waiting for side effects to kick in. 
I’m sure a lot of your partners tiredness is due to the stress of it all, and 6 hours is a long time to be there. It’s positive that he’s having it as an out patient though, it must be nice to be able to look after him when he gets home xx

Oh bless you that’s a long time for you to be apart. My partner spent 2 weeks in critical care prior to his diagnosis and it was really hard not being able to be there for him. My partner is going to be having chemo 3 times a week and he too is waiting for side effects to kick in. He found out today that they gave him a dose of chloramphenicol in the flush so he thinks that’s what is making him feel sleepy. Good luck to you and your partner, I’m here if you need anything. Xx

Thank you that’s really kind - and if you need to chat at all then I’m here. It is a long time, but I know he’s in the best place, it’s just all been very quick so it’s not quite sunk in really. He was fine up until last Monday, then went into A&E with breathing difficulties on the Tuesday, and now he’s having chemo!

hopefully your partner is able to sleep - I’ve said to mine to try and eat what he can and rest as much as he can while he does feel ok xx

Thank you. I know what you mean about it being a shock. Here whenever you need. I don’t have any information but we can at least share experiences when you feel able to. Xxx

Yep that sounds good to me -  talking to someone who’s going through the same kind of thing is just as helpful as information sometimes isn’t it? 

Definitely. I’ll be thinking of you and your husband. Take care xx

Hi . How is your partner getting along. We spoke in another site I think. I too am recently diagnosed with TPLL. Annette x

Hi Annette thank you for getting in touch. Yes I think we spoke on the leukaemia site. My partner is doing ok thanks. He has had 7 doses of Alemtuzumab. He hasn’t had any side effects and actually is feeling better than before he started as he was really poorly then. His white cell count has dropped from 150 to 5, his HB and platelets have dropped which is a worry but they said that they can do something about that. How are you doing? Xxx