Tuesday 12 August 2014

Moving forward, a surprise and some very good news!

It's been another busy week in which we have moved forward on a number of fronts....

...On the home front, the new garden shed has been assembled, moved into place, anchored, made weathertight and kitted out with shelves and boxes and is now providing a home for the garden stuff that's been stored under a tarpaulin since the old shed came down in the spring.  

The new paving has been chosen, ordered and paid for, ready to be laid by the contractor at the end of the month, together with the railway sleepers that will form the new raised beds. A decision has been made on the replacement deck boards, so we can now calculate quantities and place an order.  

Still things to do, but the garden makeover is moving forward on schedule.

...On the family front, we visited Steve's mum in Bristol on Saturday afternoon and our nephew Nick, partner Kate and their daughter Esme on Sunday morning (where we were given some lovely pictures drawn by Esme!)

By Sunday afternoon, the car was loaded up and we were on the road from Bristol to London, helping our son take some heavy, bulky items to his new flat share. Then back on the road to Oxford, under the huge super moon on Sunday evening.  A round trip of about 300 miles over the course of two days, but worth it to spend some time with the family!  

....On the health front, Steve has felt good and has been relatively active recently, because of everything that's been happening.  By this time next week, we will have a clearer idea of what's going on inside, and find out whether there are any clinical trials recruiting locally which might be suitable for him.  Following an assessment a fortnight ago, I now have an appointment to see a spinal specialist at the end of the month to find out more about treatment options.  

Regular readers of the blog may have picked up that the dragonfly has become a symbol for many in the meso community on Facebook.  Imagine my surprise and delight when one arrived in the post in the form of a dragonfly brooch from a "mystery" sender.  

But I've guessed...Thank you Jan, such a lovely thought!

As everyone in the mesothelioma community knows, there are many heartbreaking stories out there on a daily basis. We feel for our friends going through treatment, like Lou in Australia; those awaiting treatment like Amanda's Ray; those like Tess, who have decided not to have any more treatment, at least for the time being; those facing the end of life, and those who have to stand by and watch their loved ones decline, feeling helpless...When bad news happens daily, good news is a great boost to all of us....

And, oh boy, there is some good news to share and celebrate! Fellow meso blogger Mavis, who was diagnosed around the same time as Steve, has been taking part in a Phase 1 clinical trial of a new immunotherapy drug MK3475 at the Royal Marsden Hospital.  Yesterday she found out the results of the first scan taken since starting the trial: shrinkage on all tumours!  The meso community on Facebook is buzzing with delight and relief....could this be is the silver bullet that will stop mesothelioma in its tracks?  Far too early to jump to those sort of conclusions, but it does look very promising!

Here is a link to Merk's page listing a range of trials involving MK3475 Pembrolizumab worldwide, in case you want to follow it up.  I believe this is the one that Mavis is taking part in Study of Pembrolizumab (MK-3475 in participants with advanced solid tumours (MK-3475-028/KEYNOTE-28) NB It is only open to patients whose tumours have NOT responded to current therapy.

Sadly for Steve, people with a clinical history of autoimmune disease, such as arthritis, are excluded from the trial so taking this immunotherapy drug is not an option for him, unless it's designated as a Promising Innovative Medicine (PIM) under the Early Access to Medicines Scheme.  Let's hope so.

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