CAR T

FormerMember over 6 years ago

17 replies
24 subscribers
12716 views

Well I've been accepted for CAR T treatment at UCLH. Go for Harvesting on 10th July , then four to six weeks later go in to hospital to have the modified cells put back. From what I understand the treatment is a bit like a SCT. Will have to stay in hospital for a couple of weeks because there can be some very nasty side effects. Then you have to stay within an hours drive from the hospital. Luckily UCLH do have provisions for you to stay close to the hospital, which is good as I live 3-4 hours away depending on traffic through London. Is there anyone else on this sight who has or is waiting for CAR T treatment.

Lyn x

Thehighlander over 4 years ago in reply to FormerMember

Hi again Zef..... just to let you know that many of the community members have put information in their profiles so do hit their Community names and have a look. Some members do mention the hospitals they received their treatments at.

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

My cancer story

FormerMember over 4 years ago in reply to Thehighlander

Thanks a lot

Zef

johnr over 4 years ago in reply to FormerMember

Hi Zef it would help to know which country you are seeking treatment in as people post from many different countries on the site, though we are predominately mostly UK patients.

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

FormerMember over 4 years ago in reply to johnr

Hi johnr

Thank you. I am from India and actually I'm looking different countries that administer the treatment. And if I can get information about centres available in UK that would be of great help to me.

Thanks and regards

Zef

johnr over 4 years ago in reply to FormerMember

Hi Zef, two key hospitals in the UK are UCLH where Lola was treated in London or The Christie trust which is in Manchester, in the UK the are a few hospitals now offering CAR-T cell treatment, you could contact either of these hospitals for contacts. You could also look on the Lymphoma Foundation website for details of hospitals in the USA.

For the latest on treatments look on the Lymphoma Hub website its a good starting point.

regards

John

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

FormerMember over 4 years ago in reply to johnr

Hi John thanks a lot I really appreciate your help here.

Zef

Whatcanyoudo over 4 years ago

Hi Lyn,

I know HaffyGirl who you follow has had it at UCL - she was in the same time (I think the same floor - lovely views!) as me in June 2020 when I had my SCT! When I last had contact she was doing well. She mentioned a dedicated Facebook page. I am not a Facebook fan so cant tell you how to find it but she seemed to get a lot of help there during her CAR-T journey.

Do keep us all updated - good luck!

Mike

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