OK, its taken a bit longer than I had expected to bring you all an update on this blog, but things have now finally moved a little closer to me getting on a dedicated, mesothelioma clinical drugs trial, but its still too early for any celebrations. But there is now some light at the end of the very dark tunnel.
Those of you who have read the part one to this blog, will remember that I had found a dedicated meso drug trial running at Leicester which is using immunotherapy as the primary treatment and I was waiting to see if I could get my foot in the door and join their clinical trial. Well finally, after several false starts, I got an appointment to go down for a clinical assessment, (pre biopsy screening). The false starts being due to local hospital and clinical trial admin being unable to track down certain medical records needed for their team review of potential candidates.
Sounds complicated doesn’t it, let me try to explain the process steps I’ve gone through to get to this point, if for no other reason than to outline how much people with terminal cancer have to go through just to get on a clinical trial. At least in my experience.
Step 1, make a request through your oncologist to write to the clinical trial lead for you to be considered for their clinical trial(s),
Step 2, share your medical records and most recent scans with the clinical trial team for their in -house consideration and selection of potential trial candidates.
Step 3, the clinical trial team collectively review all oncologist submitted candidates and decide who will be asked to come in for a clinical assessment with a trial team member.
Step 4, attend a clinical assessment, where they look at you, your level of fitness, and your personal and family medical history and decide if you appear to be a suitable candidate. If so, get you to sign a consent form for the clinical trial team to access your biopsy block (taken at time of cancer diagnosis).
Step 5, clinical trial team have your biopsy analysed to see if it meets the trial prerequisite and criteria. If it does, invite the candidate back to begin the clinical trial induction.
So after all this, I’m now hovering between steps 4 and 5 after undertaking a 300-mile round trip to attending my clinical assessment earlier this week.
Thankfully, after passing my clinical assessment, some of the other prerequisite benchmarking (CT scan and bloods) were done during this visit, which should speed things up if my biopsy analysis is positive.
So once again it’s a waiting game, wait while my biopsy gets analysed to see if I have the right sort of gene/DNA defects that this particular immunotherapy clinical trial is targeting. On the plus side, typically 80% of people will be suitable for the trial, the downside is that it will take 2 to 3 weeks to find out.
In the meantime I worry that every new twinge, ache, pain or cough I feel or experience is a sign that things are getting worse with my cancer and that this will somehow stop me getting on this trial. Watch this space for part 3 and hopefully some good news!