Hello!

It looks like you're new here. If you want to get involved, click one of these buttons!

Howdy, Stranger!

It looks like you're new here. If you want to get involved, click one of these buttons!

Hi everyone,
Following information from UK Government and the publication of NICE guidelines, we have updated our advice on the coronavirus for people who have received or are waiting to receive a stem cell transplant to treat their blood cancer or blood disorder. Read our coronavirus guidance here: www.anthonynolan.org/coronavirus

Reducing ciclosporin

My husband David is now 84 days post stem cell transplant with matched 10/10 unrelated donor following induction chemo and reduced intensity conditioning ( he's 62 and an AML patient). Since transplant he has been remarkably well with only minor mouth infection treated with antibiotics. His consultant has started to reduce his ciclosporin by 25mg every 5 days till our clinic appt next week (appts every 2 weeks). I'm now feeling very anxious as no one knows what will happen, how have you all coped with this difficult period of treatment given the nasty things that they warn about. David spent 10 days in ICU at the very start of his induction chemo with pneumonia and sepsis, I'm really struggling with this and don't want him to suffer that again. Sorry but I'm a worrier, David isn't!!!

Comments

  • Hi Cynthia,

    It's understandable that you will worry as it is an apprehensive time for you and David. It sounds like David is doing well and isn't far off the first milestone of 100 days post transplant, which was the point by which I was told most major complications would have shown up. I'm afraid that's not to say it's all plain sailing after that point but most things that crop up after that are less likely to be as serious. David is still at risk of infections and needs to be cautious about what he does as his consultant will no doubt tell you.

    By the sound of it his consultant is happy with his progress to be reducing his Ciclosporin and I seem to remember my dose reducing fairly quickly at a similar point.

    Everyone is different though and David could recover fully without any complications. Try to maintain a positive attitude, help him to steer clear of infections and continue to support each other the way you have done so far.

    If I can reassure you at all I would say that the frequency of your check-ups at the moment will pick up any infections early and enable them to be treated before they get out of control and of course if David feels unwell at all, let your transplant centre know immediately and don't hold on till your next clinic appointment.

    Things will get better and back to normal eventually, but it is a slow process and a tense time. Focus on the end goal and celebrate each step along the way, starting with day 100.

    Good luck to you both.

    Steve
  • Thank you so much, it really helps to share in your insight and experience. This journey just overwhelms me sometimes, its the uncertainty of it all I'm struggling with I think.
Sign In or Register to comment.