Sct

Hi guys hope you are doing well.

Slight change of plan so I've packed everything all ready for my last chemo inpatient stay today. I arrive see my consultant and he now advises me of change of plan. Apparently chemo didn't work as effectively. Fortunately it is localised so he suggested best course is radiation therapy followed by cart t. Unfortunately they dont do cart t there so are making a referral to kings college London. Has anyone else had treatment at Kings and or cart t and can.offer me some helpful advice,? m still in shock with all the changes 

Thank you

Alice x

Oh noooo, Alice, what a bummer. But there’s a thread about CAR-T on here, have a look.

hugs xxx

Hi Alice sadly this can happen with dlbc as it can be stubborn at times, the goodish news is CAR-T is proving to be a very good option for  relapsed dlbc patients. The is a 1 hour video on the Canadian leukaemia and lymphoma site about car-t if I can find the link again happy to post it for you if you feel its something you want to watch. 

John 

Hi Alice, sorry to hear the change but CAR-T is the next amazing step forward like SCT was.

If you go to the top of your thread you will see ‘discussions’ hit the tab and you can go back through to see the CAR-T threads ((hugs))

Thank you all yes please any positive cart t amd or radiation stories are gratefully received 

Many thanks 

Alice x

As you know Lyn Lolla and Sue s husband are on the CAT-T rollercoaster at the moment and I am sure that they will pick up on your post when they can ((hugs))

Hi Alice here is the link to the webcast on the Canadian site, though I have not had time to watch it but others on a different forum have.

https://www.llscanada.org/events/new-treatment-horizon-chimeric-antigen-receptor-car-t-cell-therapy?src1=22346&src2=

The are a number of Americans posting about their experiences and as the treatment improves the neuro toxicity seems to be better managed, the was also a report on a group of French patients who went through the trial, if I remember correctly they were all dlbc patients 18 months ago and initial results are good, better than the 33% you have been quoted, that's the problem with stats they are out of date when they are published. 

The is so much out there now its hard to keep up to date with this treatment.

 Hi Alice, Just been catching up on the discussions , as you know I’ve just had CAR-T & things went really well for me. I had very few & mild side effects,I have also had my first scan & am in remission already.  I have been very lucky with this treatment , hope you will be too. I had my treatment at UCLH but I would think it’s going to be very similar procedure at Kings. 

Love Lyn x

Hi Lyn

Thank you for your message. I'm so thrilled it's worked out for you was so happy to read your in remission.

How are you feeling? Did you have to stay in the whole time as inpatient and was month? I'm having a referral made did it take a long time for your referral? 

I hope your enjoying time at home with your cats.

Alice x

Hi Alice

yes I did have to stay in hospital for the full 28 days , but only because I got C.diff I would have been allowed out otherwise after 21days. Would have had to stay within an hour of the hospital though , my brother lives very near UCLH so I would have gone there.

 I’m feeling really good now , but still getting my strength back after 5 weeks of inactivity.

The referral took about a month but all hospitals are different . Then you have to wait for a slot to have your T cells taken . Lots of tests to have as well. After T cells are taken it’s six weeks before they come back from America & you go in hospital for the cells to be given back to you.

Lyn x