Getting back up to speed and the start of an action plan

After being stopped in our tracks for a short while following Thursday's news that Steve's meso is on the move again, we are slowly but surely getting ourselves back up to speed - helped on our way by all the messages of support and good wishes.  Thank you all so much!  It feels wonderful to have so many people there for us, helping us move forward.  I will try to reply to you all individually, but it will take a bit of time.

Now the raw edge of the news has dulled a bit, we have been thinking about where we go from here.  One decision has been made.  Steve definitely wants to do something, rather than sit back and wait for the meso to grow and spread before taking any action.  So Option 1 has been set aside.

There is scientific evidence that mesothelioma patients who experience a relapse after being treated with pemetrexed based drugs (like Steve) may benefit from being treated with same drugs again.  You can read a summary of this Italian study by clicking here.  Our meso friend Heather confirms that this was her husband Alan's experience too.  So a further regime involving pemetrexed (aka Alimta) looks like a good fall back option to have in the bag, if all else fails.

However, Steve is keen to try something new, so we are focussing our attention on drug trails which are currently recruiting.  We know from experience last time round on the Velcade trial, that people on drug trails are monitored very closely and given lots of attention, which is always reassuring.  

We also know that drug trials are essential to find a cure for mesothelioma, so by taking part in another one, Steve would be helping others in his position in the long term.  Who knows?  He might even find himself taking the drug that is more effective than the current gold standard....  

Of course, he might find himself taking a placebo in a Phase 2 trial.....But as long as that's combined with pemetrexed (and maybe a platinum-based drug) he would be no worse off than if he had another chemo regime like the last one.

Phase 1 trials are different - everyone gets the trial drug. It's very much a step into the unknown, but it might be a leap in the right direction.  

To make an informed decision, we need relevant, detailed information about the trials on offer; what they involve; how they work; the side effects of treatment; whether Steve would be a suitable candidate.  And we need to gather this in an organised way, so that we can have a productive discussion with the consultant on 9 January.  

This morning we talked about a multi-pronged approach to move forward:

• Contact the specialist lung nurses at our cancer centre to ensure that it's the consultant we see in January (rather than a registrar) and to let him know that we want to know more about the Oxford-based VanSel-1 Phase 1 trial which he is leading, as well as his professional opinion about other drug trials within travelling distance of Oxford
• Contact Barts Clinical Research Centre with a synopsis of Steve's meso history to seek their views on whether they would consider him a potential candidate for any of the trials that are currently recruiting, including the SKOPOS trial of Trovax alongside chemo (although Steve's history of arthritis would probably rule him out of this immunotherapy trial); MESO 2, which involves adding a biological therapy drug called Ganetespib to the standard chemo; COMMAND trial which involves taking either another biological therapy drug called Defactnib or a placebo (not so good if you get the placebo and the meso continues to grow); the ADAM trial - a phase 2 study to compare the results of a drug called ADI-PEG 20 with best supporting care (again, not so good if you don't receive the trial drug)
• Contact Andrew Lawson - a doctor and fellow meso patient, to find out more about his treatment which involved drug trials abroad and whether he has any advice about those currently on offer in the UK
• Talk informally to our friend and neighbour down the road, who also happens to be an oncologist (although he doesn't work locally) 

At the moment, from our point of view, the front runners in terms of drug trials appear to be MESO 2, where at least you get standard chemo if you are not picked randomly for the trial drug, and the Oxford-based VanSel 1 trial - a step into the unknown...but isn't life like that anyway?

But enough of this stream of consciousness stuff!  Back to reality now...

I have to get a copy of today's Guardian as one of my images is featured in the magazine for the second successive week; 

we have an engagement party to look forward to this evening; a Secret Santa present to wrap and post; cards to print, sign and post; presents to think about; other meso warriors' news to catch up on as well as lots of e-mails to reply to and plans to make for what promises to be a very busy time between now and D-Day on 9 January.  Oh yes....and Christmas/New Year in between!

Big hug to all the meso warriors, especially Jan whose scan results did not bring good news and who is now so breathless when climbing the stairs and walking any great distance that she is now investigating chair lift and wheelchair options. Good luck too to Amanda and Ray, who is almost at chemo cycle 4, with cycle 5 scheduled for New Year's Eve, and Mavis who gets her scan results next week 

xxx

Tweet