Well, the PET scan has come and gone. I have talked with all of the important players here and in Vancouver. The Spring sun is starting to warm us and what more could I ask for?!
In summary, I have had another mixed response to treatment late last year. Some of the newer tumours have disappeared completely, including the one which was causing me spine problems. It's nice to be rid of that monster! The bulk of tumours seems stable and less aggressive. Two tumours continue to grow and one of them has doubled in size since the previous scan. Of course, on good days, I assume it is still reacting to the treatment and it may relax a bit soon!
It looks like there is not really any further treatment available in BC at the moment. I have asked for a referral to a surgeon to consider excising all seen disease and that appointment should happen fairly quickly. I have spent a great deal of time recently looking for appropriate clinical trials of new medications and there are certainly some interesting ones coming up. Very few of them reach Western Canada alas. Until the protocols are finalized, we don't know who will be included and who will be excluded though. I had just tracked down a perfectly suitable clinical trial in Seattle, so close by, only to hear today from the recruiting doctor that it is now closed. When I asked if that information could be made available to people like me so that we are not wasting precious time, I was told that closing the trial is a long process! There I left it.
And so, here I am, feeling very positive and calm most of the time and the good weather is starting to show. I am really looking forward to a beautiful Spring!
In summary, I have had another mixed response to treatment late last year. Some of the newer tumours have disappeared completely, including the one which was causing me spine problems. It's nice to be rid of that monster! The bulk of tumours seems stable and less aggressive. Two tumours continue to grow and one of them has doubled in size since the previous scan. Of course, on good days, I assume it is still reacting to the treatment and it may relax a bit soon!
It looks like there is not really any further treatment available in BC at the moment. I have asked for a referral to a surgeon to consider excising all seen disease and that appointment should happen fairly quickly. I have spent a great deal of time recently looking for appropriate clinical trials of new medications and there are certainly some interesting ones coming up. Very few of them reach Western Canada alas. Until the protocols are finalized, we don't know who will be included and who will be excluded though. I had just tracked down a perfectly suitable clinical trial in Seattle, so close by, only to hear today from the recruiting doctor that it is now closed. When I asked if that information could be made available to people like me so that we are not wasting precious time, I was told that closing the trial is a long process! There I left it.
And so, here I am, feeling very positive and calm most of the time and the good weather is starting to show. I am really looking forward to a beautiful Spring!
Thanks for the update Nigel.
ReplyDeleteOne would think the doctors/researchers would be sensitive to the concerns of people searching for therapies. Good to shake them up and remind them there are people out there who need up to date information.
Lovely display of colour on the patio.