After Cycle 5 of Brentuximab, of which I asked to go back to the full dose this time, to see if the dose limiting for the peripheral neuropathy and total time delays totted up and therefore may have contributed to there being disease progression after being PET tumour free after cycle 2. So I decided to have another PET scan to complete the picture for me.
Cycle 5 of Brentuximab showed since cycle 4 that the disease was indeed stable so no progression of the disease , no reduction and no growth within the last and single dose cycle.
This led me to conclude a few things looking at what had happened since the first cycle objectively...
Brentuximab for me at least needed to be given in its standard dose not dose reduced and not delayed to ensure its best outcome.
I have learned that Brentuximab has low cure rates and most certainly low durable remission rates, so why is that? In short there are no scientific answers to this as the drug companies don't go looking for this information. So I hypothesise based on my experience and outcome that the drug only inhibits its metabolic activity temporarily and does not kill the seeds of its primary local existence, therefore in my opinion, the drug should only be given in combination with a chemo that a patient is tested as being sensitive to, vis a vis RGCC chemo sensitivity tests. Something like a GemCarbo regimen + Brentuximab is far more likely to succeed. Why? Because you need to disrupt and remove the micro environment consisting of your own immune cells surrounding the Hodgkins RS cells, thought to be attracted there by Hodgkins as a camouflage to stop the immune system attacking the Hodgkins cells hidden among them. I don't believe Brentuximab can or could ever destroy those micro environment cells as quite simply and factually they are not CD30+ Cells that Brentuximab targets, but ordinary chemo would.
I have also established a link from research into high Ferritin levels and a Hodgkins that shows that levels of iron deficiency and reduced haemoglobin as a direct result from advancing Hodgkins has a significant bearing and an increase on relapse rates 4 months after radiotherapy. So the more destruction of red cells and the reduced ability to transfer haemoglobin to red cells produced by bone marrow indicates some cause and effect of Hodgkins on your prognosis.
Now because my Ferritin level was 4000 before I started treatment I took ExJade as this seemed off the scale and fought to be damaging to the liver long term. Exjade which is
Deferasirox reduces the amount of ferritin stored in the liver, and I took it for about a week during the first two cycles of Brentuximab, therefore given my levels dropped by about 80% after taking this and I had a full response to Brentuximab for those two cycles only and not thereafter, could this also be a factor in the outcome of disease shrinkage and progression? I think this needs investigating.
My next post will tell you what I have done next.
