Advice On Travelling From UK to USA For Trials

Hi Lupin a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups. 

I was diagnosed back in 1999 with a rare, incurable type of NHL Stage 4a so I understand the challenges of this journey well.

What type of NHL does your son have!……. When you say Cart you are referring to CAR-T?

CAR-T was not around back in late 2013 when my co diction became aggressive but even then it would not have been suitable for me so I went on to have two Allo (donor) Stem Cell Transplants that did the job for me (hit my community name for my story)

I have been helping out in this community for over 5 years and also on the Lymphoma Action support platforms and I have never talked with anyone who has went abroad for any trials.

I see you have also posted your question to our Experts so let’s see what they come back with.

You may want to look at the Lymphoma Action Lymphoma TrialsLink and also call the LA helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3….. if any organisation in the UK knows what is available in the UK - Lymphoma Action will.

Thanks for your response Mike, your success story is incredible

That's interesting to know you had 2 allo stem cell transplants. . . these have been ruled out as options for my son due to their unlikely effectiveness, hence why we are having to turn to clinical trials

Yes as a result of the failed cart cell therapy the life expectancy is a matter of months due to the falling blood levels.

following a recent bone marrow biopsy my son is said to have very few CD targets resulting in very few clinical trails being suitable for him, in addition many of the trails in the UK require a lump of disease and reasonable platelet levels, which he is lacking

Many thanks

My Stem Cell Transplants were a last role of the dice due to how aggressive my rare type of NHL had become. If this did not work there was nothing else so we decided to go in fighting and if it did not work then we gave it a good try.

It may take a few days before you get an answer for your post in the expert section.

Keep pushing the doors - always around to chat.

I am so sorry to hear this, this aggressive lymphoma is an evil. As a parent you have to do everything to save the life of your son by all means. I am not sure if there is any better treatment there as CART cell usually works on extreme refractory Lymphoma. RCHOP did not work on my 24 years old son, so he was salvage chemo followed by Stem cell transplant and according to the doctors he was in remission but lymphoma relapsed within a month and he passed away