Tuesday 15 January … Part 2

Big update deserving a post of its own!

Just had a visit from my consultant, David Welch. Good news is that my blood chemistry is significantly improved with creatinine down to 140 (still above my baseline of 130 which itself is higher than the average) at the Ca is down to 2.73 (not sure of the units!) which is still high but heading in the right direction.

So with IV stopped, and a PET scan scheduled for tomorrow I might me discharged tomorrow afternoon or Thursday morning!

So then what? Good question, well presented!

The mass is responding to the steroids, but there is still some uncertainty over the diagnosis. It could be diffused large B cell lymphoma (DLBCL) or it could be Blastic Mantle Cell lymphoma (BMCL); both look very similar under the microscope, but have different treatment options. DLBCL would be treated with conventional chemo, while BMCL would be treated with a drug called ibrutinib. Histo-pathologists are stareing down their microscopes as I type!

Ibrutinib has proved to be very effective against conventional MCL, but it’s efficacy in BMCL is less well known and it may be less effective – so maybe I am being a guinea pig!

Anyway grounds for optimism!

There are still some questions to think about – do I continue at Guys where they know me, but it’s a long trip for blood tests, or could I have blood tests done locally, or have the treatment and management at Southampton where I have been treated and have a MCL expert in their cancer centre? But I don’t need to decide that yet!

(Oh yes, I repeated the question about how steroids work in stacking cancer cells, and it seems that the exact molecular mechanism isn’t well understood. What is known is that it works! Good enough for me!)

So very much Onwards and Upwards!

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