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...
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.
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
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.
Hi again Ruth,
being in the Manchester area, hopefully this will be a procedure overseen by the Christie team of NHL specialists.
thinking of you
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
Thank you xx
Thank you Alice
i will search your posts.
going tomorrow xx
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.
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 .
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.
so happy for you
Hi Alice the best start to 2020 you could wish for and I am sure it will take a while and may even feel like an anti climax, enjoy the moment if you can
Great news Alice, I am so pleased for you.
Now to focus on moving forward and building on this new foundation ((hugs))
Thats absolutely brilliant news so pleased for you. I’m waiting for the results of my second scan, first one was completely clear , but it’s still nerve racking every time. Was in hospital over Christmas & new year with a fungal lung infection , was not looking forward to being on my own all over the holidays as there was no trains up to London. However my daughter came up & stayed with me , we both said it was the most relaxing Christmas we had ever had. No cooking , no washing up & we could have a doze whenever we wanted. Still missed the rest of the family though.
love Lyn x
Safe payments by:
We're here to provide physical, financial and emotional support. So whatever cancer throws your way, we're right there with you.
© Macmillan Cancer Support
© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man
(604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company
number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ. VAT no: