OxPLoreD clinical trial for those with high count MBL or early stage CLL --More recruits needed

[JEEA]

As Milla15 wrote 6 months ago "this trial which is currently recruiting for high count Monoclonal B-cell Lymphocytosis or very early stage CLL patients (as well as a couple of other early stage blood disorders of uncertain significance). Trial will last 5 years and aims to discover markers which can help determine whose disease will progress, and whose will remain indolent, taking (hopefully) some of the uncertainty out of watch and wait. "

It's being led by Professor Anna Schuh out of the Churchill Hospital in Oxford, and involves a couple of blood tests and an optional CT scan. You must be within 3 years of being diagnosed to take part. Here is the link about the study. oncology.ox.ac.uk/about-us/...

While you can be seen in Oxford (travel expenses are offered), there are also sites in Bournemouth and Plymouth and there are plans for one in London in the summer, and in the autumn they hope to open ones in the North of the UK

I went for my study in Oxford in early May. It was an excellent experience--the whole process only taking about 2 1/2 hours. The researchers and administrator are well organised and thorough. Time was taken initially to go through the consent forms. Although not necessary for the this study, I also agreed for my bloods to go to the National Genomic Research Library. (I felt this to be a great honour, because I knew personally Prof John Sulston, the biologist who found the last link in the human genome and was passionate about not patenting it, but making data on it available to all. He has since died but would be so pleased to know how this has grown and what it is giving to medicine.)

I then had a physical examination given by Dr. Niamh Appleby--my first since Covid lockdown, followed by full blood screening. Optional is a CT scan, but I agreed to have this. Two weeks later, I was phoned with my results, offered a chance to discuss them, and then sent all my results by email (post is also possible)--both of the bloods and CT Scan.

If anyone in the UK who is eligible is interested in joining this --contact Dr. Niamh Appleby [e-mail] or Caroline Haddon Caroline Haddon <[e-mail]> (Nurse and Administrator) or OXPLORETRIAL (OXFORD UNIVERSITY HOSPITALS NHS FOUNDATION TRUST) <[e-mail]>

[Psmithuk]

If I were at the right stage I would apply, as it’s good to be able to do something to assist those researching into CLL .Cx

[JEEA in reply to Psmithuk]

You are right --it did feel good to do this, and of course I also received wonderful personal care as a result. But I just made inclusion--I was first diagnosed in October 3 years ago.

[Psmithuk in reply to JEEA]

Well done 👍

[LeoPa]

What a pity I can't join...

[Strech51]

I have also taken part in the Trial and had the same tests and CT scan. I am in the very early stage category of CLL. First diagnosed Feb 21 so was given the opportunity to get another set of Bloods checked roughly half way thorough my 6 monthly check up and an optional CT scan which was a bonus. I was also offered a bone marrow test which was also optional but I declined. I have been having a problem with sweating that I was worried about. Trying to work out if it was the night sweats that are part of the B Symptom Alert notice or sweats that just seems to be part of me as they happen day and night. Having the results and scan confirming that I am still very early stage was great. I also signed up to the National Genomic Research Library. It helps me it also helps others and that what it all about.

[Basil01]

Hi. I remember hearing about this but lost track; maybe subconsciously I was too afraid of the bone marrow test. If this is optional, I would give it a go.Thanks for the reminder

[JEEA in reply to Basil01]

DearBasil. I wasn't offered a bone marrow test, so perhaps they have dropped this. The CT scan is optional. They certainly need more volunteers so I would recommend it if it is possible for you to do and you are within the 3 year diagnostic limit.