Tuesday 1 July 2014

A rather long update

This may be a rather long 'update' as so much has happened and I don't know where the time is going.

I have been doing a fair bit for Cancer Research UK this year as recently a lot of investment is being made in to Lung Cancer research! I am over the moon.

I have made a short film for CRUK sponsored by the Guardian newspaper: http://www.theguardian.com/cancer-research-uk/video/lyn-story-video

...appeared in the newspaper magazine:
http://www.theguardian.com/cancer-research-uk/i-am-a-success-story

and did a couple of TV and radio interviews! All look extremely positive, and I look so well but as many of you who follow me on Facebook all is not as it first appears.

I was convinced the trial was working as my cough had almost disappeared (and as we speak I haven't coughed at all now for about a week). The second scan I had 9 weeks in showed slight shrinkage of lung tumours but some growth of nodes. I felt disappointed but apparently this is quite common with immunotherapy, a bit of pseudo progression. All in all this added up to a 4% increase overall. You have to have over 25% to be taken off the trial.

I carried on, still feeling well, looking forward to my daughter wedding, which was the most beautiful amazing wedding. Here are a few pics.....








By the wedding day I had just had the second scan, it would 3 weeks before I would get the results. I was really hoping for something extraordinary and that I would be one of the immunotherapy 'success' stories......but, although I looked well and wasn't coughing, I had started getting pain in my shoulder, ribs and scapula so I was a bit worried. I had every right to be but I wasn't expecting what came next......

I have developed 2 tumours in my liver, the biggest being 3x2cms, I have also developed multiple tumours in the pleura and the lung tumours and nodes and doubled in size. The biggest now being 7.1cms. I was devastated.....subsequently I am no longer on the trial. 

So....what are my options now? Standard but be Docetaxol, another intravenous chemotherapy, it has a 9-12% chance of success. I would lose my hair and it would more than likely make me ill like the Cisplatin/pemetrexed did last year. This to me is last resort, I am not ready to be 'ill' yet or look 'ill'. The way I see it, it could make me too ill to carry on and/or try something else. At the moment I don't want to do this at all, not with the small odds of success it has.

The other options and which are what my oncologist would rather try first (and have a greater chance of success) are TKI's again. TKI's are Tyrocine Kinase Inhibitors, drugs to combat the gene mutation I have (EGFR - Epidermal Growth Factor Receptor) I have however already had one drug in this group - Iressa- and developed resistance to it (Hence going onto to the Cisplatin/pemetrexed then the trial). There is some evidance though that a break from TKI's and a course of chemo, can 'reset' things so that the TKI's can work a second time.

The drug of choice to use is Afatinib. It is supposed to be a second generation TKI. In other countries where patients have failure on Iressa or Tarceva, they are automatically put onto Afatinib.

In the UK however, NICE only approved Afatinib for first line use so for people like me, on 3rd line it is not available on the NHS! The Cancer Drug Fund won't fund it as I am not a 'one off' there are many of us who would benefit so it would cost them :( - Doesn't seem fair does it? They know will will benefit.............

So the only way I can get it is to pay for it for which I would need about £17,000 

The next options are to try Iressa again or Tarceva, I am now waiting for an appointment with a new oncologist (I'm going back to Stafford for my care now as I'm off the trail) so we can discuss the next best option.

In the meantime, my lovely daughter has started fund raising to try and get the money together for me to get Afatinib. I cannot believe how many people have wanted to help, some I don't know and have never met. I am truly humbled and feel very emotional that people think I am worth helping like this.

I don't expect people to just keep handing over donations so to raise money I am organising (with help as I have quite a lot of pain at present, taking regular morphine so subsequently a bit slow at times and very tired) events etc. We have an 80's disco on 2nd August and I am also making a crochet blanket (although I do keep falling asleep hook in hand). Some of my lovely friends are also organising things on my behalf. The events I am involved with will be sharing the money made with Roy Castle as there are other people like me that also need help - or will in the future - so we still need to fund research.

Here are the links to events: 
https://www.facebook.com/charityblanketraffleRCLCF?ref_type=bookmark

https://www.facebook.com/events/245851705614753/?fref=ts

I hope my next post has some positive news, in the meantime I will stay as positive as I can, loving everyday and doing what I do best xxxx