Stem Cell Transplant on hold part 2

I posted on here before Christmas that my daughters SCT was on hold.

We saw consultant yesterday and we are being referred for CART-T now.  Going to see someone in Manchester Royal Infirmary this week.

Just wondering if anyone else has done this.

Thanks 

Ruth

  • Hi Ruth, change of plans but a positive way forward.

    There are number of the folks on CAR-T so let’s look for them to pick up on your post.

    You can also hit the discussions tab above and have a look at their posts ((hugs))

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • Hi ruth the have been a couple who have gone through CAR-T cell treatment and I am sure Mike will point you in their direction and they post in this group. Whilst still new-ish treatment it is proving to be successful for DLBC patients, the are risks but will leave those for the consulting team to explain, also its still developing so some of the side effects can be reduced, last time I read about it the were over 160 UK patents lodged so that shows the research and development that is going on.

    John 

    we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
  • Hi again Ruth,

    Tagging:

    Lyn 

    Alice

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

    Click to see how to add details to your profile

  • Hi ,

    being in the Manchester area, hopefully this will be a procedure overseen by the Christie team of NHL specialists. 

    thinking of you 

    hugs xxx

    Moomy

  • Hi Ruth

    There are a few folks on here who have been treated using Cart T. I have just completed my 28 days of cart t with Kymriah for dlbc. I had radiotherapy for 15 days as holding treatment after collection of my t cells (part of the process).  Your welcome to read my posts.This got me to partial remission. For cart t I spent 2 weeks in hospital in London with relatively few symptoms main one a fever. I then had to stay within an hour of the hospital for further 2 weeks to go in for blood tests twice a week. This was in December but fortunately I made it out for Christmas. 

    I wish your daughter all the best with her treatment 

    Take care

    Alice x

    Alice x
  • Thank you xx

    Ruth
  • Thank you Alice

    i will search your posts.

    xx

    Ruth
  • Thanks Mike

    going tomorrow xx

    Ruth
  • Hi Ruth

    I hope this is helpful. You can also look up on utube robin sanderson cart t. He's a uk consultant who has done a lot of research into cart t. I also joined a Facebook group on cart t it's mainly American site but also a few english. One of the friends I made on this journey has got her complete remission after 219 days and by day 30 half of her cancer had shrunk and I know another girl still in remission after 18 months. 

    Alice x

    Alice x
  • Hi all

    I hope your doing okay.

    I just thought I'd give you an update. I only found out today. I just been told after my relapse in july last year and after first month cart t scan I'm in FULL REMISSION no B CELLS Blush.

    It's still hasn't sunk in. I took Kymriah and my consultant advised his first patient in 2011 is still going strong with Cart T cells. 

    A good start to 2020.

    Alice x

    Alice x