Tim UK wrote:Hi
I realise I haven't posted for a while and thought it might be helpful to circulate the answer to a PM I received from a fellow member recently. Please follow up with other questions and I'll be happy to try and answer.
My experience has been positive. I've been on the trial for 14 months (since Oct 16). My tumours did start shrinking after about 4 weeks. It has not been a straight line however ... There have been some that grew a little, and some that shrank. On balance though, my disease has been stable to slightly lower.
It certainly hasn't cured me (of course). My doctors have an interesting view: unlike chemo, where the outcome is pretty binary (it either works or does not), this is more nuanced ... I feel as if I am living with the disease in a kind of balance. The side effects are much much less than chemo. I live a good life, I hike, run, play sports, hang out with my kids, friends, family, eat, drink as I wish. And yet ... the disease is still there on scans, biopsies etc.
The logistics are a bit tiring. I fly each week from London to Barcelona, where I spend a day and a night. But it's worth it.
Tim UK wrote:Hi
re HIPEC, I have very mixed feelings. When I did it, the triplet therapy and immunotherapy programs weren't really an option ... so I did it, and was told afterwards that it hadn't gone as planned. (As I'm sure you know, they have to be confident that all macroscopic disease can be eliminated, leaving the hot chemo to get the micro - in my case there was more macro than thought and they only got 90-95% out). So it was quite a depressing period ... the recovery is brutal, and I was wondering the whole time was it worth it.
Knowing what I know now, and speaking specifically about my own case, I would have done the immunotherapy trial first, and also the triplet combo. The HIPEC left me with a much shortened gut and a scar that healed badly, which caused new metastases along the scar line. So I guess I would have left out as a later option. But who knows? Maybe it did more good than the docs thought at the time.
Tim UK wrote:The logistics are a bit tiring. I fly each week from London to Barcelona, where I spend a day and a night. But it's worth it.
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