I've volunteered to take part in the REMoDL-A trial, went into the oncology department yesterday and signed up for it. It's standard R-CHOP with an extra drug (acalabrutinib) added in to possibly enhance the effects of the existing treatment. There was a detailed consent form, a few questionnaires on how things are right now before I start my first dose, then extra scans and blood tests, plus an ECG. I've got to go back in today to get a CT scan done, and they also want to take a bone marrow sample, all to be done before Monday, when it's Day One of the Chemo cycle.
It looks like I'll be having quite a few more hospital visits for extra checks, especially blood tests, for the REMoDAL-A trial, but once I get into the routine of things then it'll just become normal. I hummed and hawed about taking part, then I thought 'Why not? If nobody does trials then we'll never know if new treatments work or not' ....so I'm in.
Wish me luck :-)
Wishing you well on the treatment Steve. Yes someone has to blaze the trail for others, without this progress is not made.
I was in the same boat during my first Allo Stem Cell Transplant as the conditioning used did not have any chemo involved and although the graft failed within 6 months the lessons learned were put into good use. I have a rather rare skin NHL and had never meet or talked with anyone with the same condition until 3 years after my first failed SCT when I was at our local Maggie’s Centre Heamatology Support Group and the lad next to me had the same condition and was just a few months out from the exact same conditioning (with some little changes) and 4 years on he is still in remission.
Mike - Thehighlander
Click to see how to add details to your profile
I was offered, and agreed, to a place on this trial and then, as you have found, it involved delaying my treatment due to all the extra tests. They should probably make people aware of these before securing their agreement. Eventually my consultant said it was more important for me to start the standard treatment sooner rather than wait for the trial as my condition was in danger of deteriorating. He did also say that it is a good trial, and I wish you well.
I might have to come off this trial as I've broken my arm due to it being weakened by the Lymphoma, need to have a plate fitted to repair it. So my Chemo is getting delayed till my arm is fixed. The trial coordinator says it might cause me to be withdrawn from the trial. Just as a matter of interest, my arm is extremely painful... Woe is me....