Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
HI All, Well got a date to have my CAR-T treatment at UCLH . I have a consultants appointment on the 19th August & go in for the treatment on the 27th. I think day one will be putting in my line then I get chemo for three days, then three days off before treatment starts in earnest. Don’t know how long I will be in hospital taking my iPad with plenty of books & games on it, may not be up to doing anything though. Also got a portable DVD player so can take lots of DVD’s in as well . Will need to take a large suitcase in with me.
Will let you know how I’m getting on when I can.
Hi Lyn, excitement and trepidation all at the same time but as you have said before - it has to be done.
Best to prepare to keep yourself occupied and if you use everything then great, if not, then just rest up.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Hi Mike, Too right about the excitement & trepidation. I will try to keep in touch while in hospital as talking to people who know what your going through can boost your wellbeing.
Some of us are always around Lyn and another ((hug))
Hi Lyn will watch out for your posts and hope it all goes smoothly you will be in good hands
i think we will all be fascinated by your progress, excitement and trepidation sound about right - you’re a trailblazer, after all!
Very best wishes from me too. I don’t think there’s many here who have done CAR-T - but we do have some understanding of what you are facing and we’ll all be here to help out every step of the way.
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Good luck with the treatment. My husband is waiting for CAR-T treatment approval and hoping to get it at this Tuesday's national panel meeting. He's also with the UCLH.
I’ll keep my fingers crossed for your husband. Will update every one when I can .
I wish you all the very best with your car-t treatment. Yes take your iPad etc. I took mine. The nurses and staff were keeping me entertained at marsden so lovely and kind.
Just sharing that a patient in America who had leukaemia and had car-t has just had his 6 month results and is clear of all disease, evidence this works
Thanks John, nice to hear every positive bit of news makes me feel better about the coming weeks. Was up at UCLH on Monday & if there is a bed I will be going in to start my treatment next Tuesday so a week early. Had a very positive meeting with my consultant so that helps too.
Hi Lyn, just incase you have got that early bed, here is some more positive news to help, from the French cohort where the first 60 patients with dlbc have now gone through treatment and initial signs are good for most so hang in and we look forward to an update when you are up to it.
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