To do the trial ? Investing in the dream outcome .

Submitted by Scott on Sat, 17/08/2019 - 18:15

I was sat in a doctors room , for the second time in just under two years, to be given the news that all patients dread .. I had relapsed.. My leukaemia had returned. 

All the blood,sweat and tears that had been expended over that time had been to no avail. 

The consultant was nearly in tears as she explained that the positive biopsy result she was giving me meant that my options going forward were very limited. 

So limited in fact that there were two. Conventional relapse treatment, which was a month long programme of chemotherapy on a daily basis, in the hope of going into remission for an unknown but statistically short period of time. 

Or I might wish to consider doing a trial down in London at UCLH .. 

If I chose the second option of a trial it would mean a visit to meet the team to discuss the issues . The consultant told me as much as she knew about the trial, which by her own admission was sketchy at best. 

I went home to have a chat with the family about what the best way forward was under the circumstances. 

A week later my wife and I were boarding the 8:05 A.M. train to St Pancras .. 

We arrived at UCLH and were immediately overwhelmed by the sheer volume of people sat in the waiting area we had been ushered into. 

After a short period of time I was called into yet another doctors room for the initial chat. The UCLH consultant was very reassuring right from the start, I took to her straight away .

The trial plan was highlighted to me ,both the positives  and possible negatives. 

I would , should I agree to accept a place on the trial, be only the ninth Uk patient to be involved. 

The mechanics of the actual CAR T-Cell therapy were covered in good detail. 

The main downside and probably why I was only the ninth patient to take part, were that folk didn’t survive long enough to get to the start line of the process. The trick was going to be to keep me alive long enough to be able to receive the re-engineered T-Cells probably up to six months away. 

So if I did agree to sign up, a great deal of work would need to be done in preparation. We discussed the fact I may well not make the time frame or I could achieve the dream outcome and be cured and go into a long term remission status. 

On the way down to London we had pretty much agreed that the trial would be my best option.. With that agreement in mind, I signed up on the spot. 

In the days that followed I reconciled in my mind what the way forward was likely to entail. 

I trusted the consultant implicitly and actually at no point did I consider anything other than the dream outcome being the most probable result.

It was the end of February 2018 , the cells would be given by my unknown donor ( The same person who facilitated my bone marrow transplant back in 2016) on May 1st. 

I was admitted to my local haematology department ward on an intermittent basis over the coming months. Daily chemotherapy was tolerated by my body in varying degrees , sometimes well enough to be at home , often placed in an isolation room in the hospital. 

Ironically, I went into remission quite quickly and for the most part was doing physically very well . 

Early on I made the decision not to get too involved in the Dr Google searches.. I did however get a good handle on the main principles of the therapy. What I wasn’t interested in was actual survival statistics. 

All in all the risk reward ratio of the trial appealed to me. To go down the conventional route would have a more proven outcome but with potentially a much shorter time being well. 

The prize for the trial is massive ,it could be part of a step change that could change the whole face of cancer treatments across the world. 

The chance to be involved in that process was one I thought too good to turn down. 

I have been in remission since July 2018 and still getting stronger by the day. How long that life journey will remain is obviously unknown, as it is for every person on the planet, but given what I now know ,I’m frequently asked if I would do a trial again, if it became appropriate, the answer is an unequivocal yes.. Yes in a heart beat. The chance to have a taste of the dream outcome is a very potent motivator.


March 2016 

Diagnosed with Acute lymphoblastic leukaemia 

Treatment : Chemotherapy, Radiotherapy and Bone marrow transplant (August 2016)


February 2018

Accepted on CAR T-Cell therapy trial. 

Recieved cells 31st July 2018 .

In remission.  

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