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:

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: 


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


Sunday, 11 May 2014

Sometimes reality kicks in......

Sometimes reality kicks in and I realise I have cancer. Not just cancer but life threatening terminal cancer.

This week I have lost 2 friends to this horrible disease and it made me think about my own mortality.......I think mostly i get along by 'pretending' it's not really happening. It's a coping mechanism but to be honest who would want to live with such a dark cloud hanging over you 24/7. I cannot explain what that feels like, it frightens me to death.

So far, since this journey began I have been aware of more deaths than in my 30 year nursing career. These have been of people I have met, spoken to and had regular contact with. It is heartbreaking.

Some helped me when I was first diagnosed and some I think I have helped since. I hope to god that something is 'discovered' soon that changes the future for lung cancer.

I just want them all to know that they touched my heart and I will never forget any of them:

Lia, Carolyn, Trevor, Bill, Linda, Linda, Kate, Penny, Monica, Dean, Ashleigh, Lee, Barry, Lynne, I spoke to you the most, you will always be in my heart.

Thursday, 20 February 2014

2014 the news s far....

About time I did an update.

Well on the 20th January I started the MK3475 immunotherapy trial. Many of you wn't know what thsi is so I will try and expalin in a nutshell.

It is a new treatment for people with advanced lung cancer and at the moment is only available through clinical trials. I am on a phase 1 clinical trial which means it is an experimental drug and everyone on the trial will get it. This trial is to see a/ if it works b/ what side effects it will have.

To qualify for the trial they had to get a biopsy of my tumour to see if i tested positive for the PDL-1 markers (programmed death ligand) basically if you have this, it stops your immune system from fighting the cancer and therefore cancer will develop and progress. The trial drug aims to reset the balance and reinsore the body's natural defences to fight and kill the cancer.

These drugs were first used on patients with malignant melanoma - they are still in trial phase but should be licenced very soon - I have been speaking to one such patient, she first had the melanoma in 2005, it returned in 2010 with metasasis to both lungs. They immediately put this lady on the anti-PDL-1 trial and within 12 weeks there was no sign of cancer in her body! This was now over 2 years ago! She still has the infusions every 3 weeks but...how fantastic is that. She is however one of the 1 :10 people who have been complete responders. 41- 51% of patients saw significant tumour shrinkage.

This drug is now beig used for lung cancer patients like myself however the response so far has been around 24%. You may nothing that sounds very much but when you look at the next option which would have been Docetaxol with a response rate of around 9% it' bloody fantastic!

So far I have had 2 infusions, side effects???/so far there haven't been any! I get a san on 24th March to see if it's working (the day before 4th infusion) Do I think it's working? I don't want to tempt fate but before Christmas and leading up to the day I started the trial my cough had been getting pretty bad, with me literally not being able to speak 3 words without me coughing really bad as the day went on...Now....it has been getting considerably better, I am still coughing a bit but I can hold a conversation no problem. The scan will be interesting!

In January I was speaking at the British Thoracic Oncology Conference in Dublin. I was speaking at the Astra Zeneca symposium about the targeted therapy drug Iressa. I was talking about 'a patient' and how well she had done, the audience were shocked when I announced at the end that 'I' was the patient. the feedback has been fantastic! Dublin it's self was wet and cold, didn't stop us exploring, having cocktails and getting lost!

I even found a haberdashery and bought some fabric for a new project I am starting.

The other big achievement is I have lost the weight I put on whilst having the chemo! I had ballooned to 11 stone! I'm now what I was just before diagnosis. No pics as yet as I want to loose a bit more before the wedding!

At the moment I am so busy, I have hospital every 3 weeks and appts can be 2-3 consecutive day's. I also have the next Craft Carnival on the 22nd March which I have organised again raising funds for Roy Castle - I do daily promotions on Facebook of the event and the stall holders. I now have an appointment with our local MP - Jeremy Lefoy- to discuss how he can help me with my Lung Cancer awareness campaign :). I can't seem to find time to make all the things I want to make (hobbies).

To end .... my fiends and myself went to an 80's night to support another friend - Heidi- who is running the London Marathon for Roy Castle in March. It was so much fun and I danced for about 4 hours non stop without coughing once and then walked 40 minutes to get home at the end of the night!
The picture is me d my sister as 2 of Bananarama!

It was so much fun I may now have to organise an 80's night on a bit bigger scale!

Wednesday, 1 January 2014

Happy New Year!

Happy New Year!
First post of 2014, although it will comprise of looking back over the last year. I can't believe how fast this year has gone, this time last year I was waiting for a scan to see how much tumour progression I had so they could decide when I was going to have to switch from Iressa to IV chemo. I made it to another 6 months before I did so.

2013 saw us living in limbo as I no longer had stable disease, we didn't have the freedom as we did in 2012 as we didn't know from week to week how well I was going to be or what the next scan would say, or when even my treatment would change but....... I made it through another year so no matter what, it was worth it.

In March I was asked by Roy Castle if I would like to have my photo taken for an exhibition by the photographer Rankin called 'Alive in the face of death'. I jumped at the chance and said yes, what an opportunity. Here I am with my Mum & Dad at the exhibition in Liverpool next to my picture!

Our first garden 'party' of the year was themed 'Happy Day's' we decorated our outdoor garden 'bar' as the 'Diner' and all our guests were asked (as always) to dress the part.

I had also been nominated for the Roy Castle Ambassadors award for my awareness and fund raising and what I have been doing to help others, and as you know I won!

At the begining of June I had to start on the IV chemo (Cisplatin/pemetrexed) here I am having my first infusion.
I did suffer a bit after this one and ended up in hospital because of the chemo induced migranes. Afer that I was no longer able to have the strong anti sickness drugs so you can imagine what happened.

A couple of weeks later we had the first charity event of the year, our second lung cancer sponsored walk over Cannock Chase. We raised around £4,000 in total and had about 100 people walking all wearing lung cancer awareness T shirts.

At the end of June my lovely daughter Tanya got enganged to Stuart so we now have a wedding to plan and look forward to.

The next event was after my second chemo. As I had thrown myself into my 'handicraft' hobbies it made sense for it to be a charity craft fair. With this the 'Contemporary Crat Carnival' was born. I roped in fellow crafters that I had met at craft fairs to help out and we had our first charity craft fair in July.
By now the steroids had started to take their toll and my weight was going up!

I still had 2 more chemo's to do. I did at this point have 3mm reduction in tumour size, not much but my oncologist said this was positive. The chemo was starting to take it's toll on me and it was taking longer each time to get over it. After 4 cycles and lot's more steroids I no longer looked like me :(

Next scan after treatment finished showed no further change so I was classed as being 'stable'. I opted not to have the maintenance as i meant sticking with the steroids and my oncologist said the difference may only be a month or so before I got progression again. I wanted to look and feel normal again for however ling that may be. Now this bit was over we decided to go on holiday and went back to Mexico (my sister and brother in law were going so we thought we would join them). It was a lovely and much needed holiday!

2 weeks after we got back from Mexico we had the second charity craft fair - the Christmas one, another great event. A coulple of weeks after that though I started coughing again, I had an urgent scan and just as I thought the tumour was growing again, not only was it growing the scan ow showed 3 tumours and more lymph node involvement. The IV chemo hadn't worked. My oncologist had said that there was a promising trial that was currently recruiting. It is for immumotherapy (PD1 & PDL1) there have been similar trials at various stages going on for the last couple of years and so far the results are looking promising.

My old biopsy was sent to San Francisco for testing but was too old so I had another one just before Christmas.

For Christmas we had the whole family round for dinner again, a lovely day was had by all. We did have some fun with the photo booth! This is my daugher and my neice.

The day after boxing day I got the biospy results back and I tested postive for the PD1 antibody. I will be starting the trial on 20th January!

2013 has been a rollercoaster. I have been over a couple of the bumps and am still going. Some of the friends I have met along this journey have not been so lucky and their journey has ended. There is not one day go's by when I don't think of all the brave soles I have gotten to know over the last couple of years. I have also made lot's of new friends this year who have joined me on this journey whether they be sufferers or their relatives, I will continue to support them all in anyway I can. So here's to 2014....may it be a great year for all of us. I for one will continue to be happy everyday, life is for living and while I'm alive I don't intend to waste one single day X

Friday, 27 December 2013

Thursday 12th May

Saw oncologist yesterday, always come away feeling depressed :(( I think it's because it makes me think about it, things, life......

I try to pretend the're wronge' and it's not really there. I want to think about having a future, I want to make plans but it just doesn't feel like I can.

I cried today on the phone to a friend, a friend who prays for me every day, there are some really lovely, caring  people out there and I thank you all with all my heart for being there for me.xxx

Thursday, 26 December 2013

Merry Christmas!

Merry Christmas!

This is probably the last post of 2013......hope everyone has had a lovely Christmas! We had another big family Christmas with 13 of us at our house for Christmas lunch. Thank fully I didn't cook, that would be my husband Paul and son-in-law to be Stuart. As you can imagine, lot's of clearing up and washing up to do.

Just reading back my last post I was waiting for the results of my biopsy testing for the anti-PD1 antibody to come back from San Francisco. Sadly the specimen was too 'old' to be tested so last week I had another biopsy taken. (CT guided needle biopsy) they did say I may get the results before Christmas but I didn't, I thought it was a long shot. Never mind I should hear soon.

After all this time of writing this blog, this is the first time I have worked out how up put on a photo! May have to go back and 'edit' all my previous posts now :)

Well back to the 'what's next' bit.......can't remember if I mentioned it but I am off to the BTOG conference at the end of January (British Thoracic Oncology Group) as a 'speaker' for Astra Zeneca (they make the drug Iressa/Gefitinib that I took at the beginning of my journey) I am quite excited about it as I am also going to attend the exhibition and other lectures. It will be a couple of days of valuable learning and information gathering.

I have contacted Boehringer Inglehelm UK to ask if they will be at the conference a I want to talk to someone about accessing Afatinib (it's not approved by NICE yet) should I test negative for the PD1 antibody (that will be my next hope for treatment). They have replied to, to say they will be there and there will be someone for me to talk to!

2014 is a bit of a milestone year for me - it may not make sense why - but to me it does, my bank cards, passport etc all seem to run out in 2014 - I don't want to 'run out' .........my goal has been to 'have to renew everything'! It will also be 3 years in May since I had my first mammogram! A the time the lady who did it said, 'see you in 3 years time' I said 'I hope so.....' as at the time it seemed quite a long shot.

2014 will be a year of lot's of fab things happening. The biggest and most important being Tanya's wedding on 2nd June. It will be here before we know it and it will be lovely, can't wait!

We also have several fund raising events already in the pipeline. 6 so far to be precise! 3 more craft fairs, the annual sponsored walk, the annual charity lunch (although that may be till near Christmas again as the one we have just had was lovely) and a Bavarian night! Not to mention a joint venture that a friend is organising for me and the Stafford half marathon! (I'm not running but I will be there with the awareness stand showing support.

I also have a mission to get into the local secondary schools to try and get through to the kids the dangers of smoking! I did write to the council about it but they reckon they have a programme in place, The ASSIST programme, supposed to be research based and supposed to work. I would question it though as the amount of young people - mostly girls- coming out of school and 'lighting up' it quite alarming! I have however managed to get an appointment with the deputy head at Weston Road Academy in January, he is very keen on working with me on this project!

I have also contacted my MP - Jeremy Lefoy- to try and get him on board with all my campaigns, not heard from him yet though so after Christmas I will be on the case again.

Well that's all from me this year so just want to wish everyone a very Happy New year and hope that 2014 is going to be a good year for everyone xxx