tim brown

Hi Ed,
I’m not in disagreement about any of this – perhaps it’s because I appear to be in the 60+% immune checkpoint failure group that I think the thrust of my question is a valid one for open debate. (Add on the almost complete lack of progress for those 15-20% who are saddled with the NRAS mutation.)
Best,
Tim

Thanks Ed- I was aware that lack of accurate  predictive bio markers is the Achilles heel of melanoma oncology (Dr Jason Luke is big on this, I believe).
Much as I appreciate the treatment I’ve received here in England, I’m not sure my team did a great job on the histo-pathology side. After my first op (axilla excision – I am MUP) the pathology analysis was focused on BRAF testing and staging info. Similarly, after I progressed 8 months after adjuvant pembro, there was no detailed analysis of the TME. Ditto Op. 3 in early August 2021.
I think it was Celeste who mentioned that low tumour burden was a useful indicator of efficacy and I wondered whether that was plain common sense or has been reported in a clinical setting?

Thanks Kathy and Ed,

I had a vague memory that probiotics wasn’t recommended but I’ll watch Dr Davies

Great response Celeste (as ever!) .
I was being slightly provocative on the superstar question- it probably reflects my suspicion for ‘surface’ traits and quick fixes that permeate most aspects of our chaotic lives these days.

T <!–more–>

Hi Mark,

Many thanks for your  response. Some thoughts:

1) In general, I’m happy with my treatment. The speed of response in the most challenging of times has been astonishing. My issue is that now that I’m marked down under the  ‘palliative’ banner, I detect a subtle,  unconscious change of mindset.

2) My lesions grow too quickly for TVEC.  Unless I get scanned every month (and that ain’t gonna happen), oncolytic virtual solutions are off the menu for the moment.

3) With the speed of growth in mind, I want to join a pilot scheme for liquid biopsy.

4) I hear what you say about the Royal Marsden but the Churchill in Oxford also has a good reputation.

5) I’m generally sceptical about the notion that ‘superstar’ oncologists (eg Weber, Long, Luke, Hamid) are so far ahead of the game that they can make a massive difference on an individual basis.
Best wishes, Tim

Hi Mark,
TVEC is most certainly on their menu, but the problem is that -possibly due to the dreaded NRAS mutation- the tumors in my axilla grow too quickly for that to be a viable option.

I find I’m quite defensive about my team at the Churchill. They worked incredibly quickly following  melanoma diagnosis in April 2020 when lockdown was crippling the health provision. I presented with a huge lump in my axilla and lymphoma was the prime suspect. It turned out to be MUP and their prompt and yet calm actions saved my life.

To seek a second opinion at this stage seems like a betrayal. Ipi/Nivo it is.  I will  ask about radiation treatment as a short term measure.

Tim

Thanks for this- again very helpful. perhaps I wasn’t clear, but the clinical trial option was mentioned in the event the Ipi/Nivo combo fails.

So far as seeking a second opinion is concerned, the Churchill hospital in Oxford has a fine reputation and I have nothing but praise for the treatment I have received.  That said, I am well aware that, further down the line,  resource issues may come into play.
Tim