Well folks, its been a bit of a rollercoaster since the most recent PET Scan came up positive for a small cluster of lymph nodes in the exact same area of the retro peritoneum that was negative on the PET just two cycles previous. The Marsden could not say for sure, with our argument, that the reduction in dose, from 140mg to 90mg, for the last two cycles and a total delay of 3 weeks, equivalent to a whole cycle, was or was not responsible for the relapse.
I persuaded the Marsden using the rationale that the reduced dose and delays were reasonably the reason for the relapse, since the more aggressive cells, I postulated, had not been well and truly killed off.
so I requested that they give me the next two cycles of Brentuximab at full dose for me (140mg). I will suffer the extra side effects of peripheral neuropathy and others since it is more important to get a remission.
The fact that I had had such an early full response, led Prof Cunningham to think that I may be in the group of 20% who get a long duration of remission. Most patients get a short lived remission on this drug.
My view is you need to add low dose chemotherapy or whole body radiation after a full response to Brentuximab to kill off any Micro circulating tumour cells in the blood which may or may not express the CD30 or that may not be killed by the chemo component of the drug itself.
I asked whether the Marsden offered Metronomic Chemotherapy, which is low dose chemo + Metformin, which research has shown seeks out cancer stem cells for cell death by the chemo. The Prof said he had never heard of it. It is used commonly in dogs, interestingly as they are able to have this metronomic chemo, which is essentially palliative treatment without all the side effects or resistance to the drug for the duration it used. I hypothesise that adding this on top of the Brentuximab afterwards and then having Rituximab as maintenance therapy will give me a long duration of remission.
That's it for now.
Feeling pretty rubbish on day 2 after the chemo so had some acpuncutre and I feel much better. I am also drinking lots of Organic pure Dandelion tea by Clipper which is only £1.69 a box at Holland & Barratt. This is said to prevent constipation and even target cancer cells much better than green tea, to the tune of 10x stronger than green tea against cancer cells.
Fingers crossed the next Pet, scheduled 3 weeks after the last chemo which will be in 3 weeks, will be a positive result!
I'm batting on.
Best wishes to all of you.
Ollie
