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!

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

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

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

Where has the year gone?

I really don't know where the time is going, it never went this fast when I was at work although I think what I do now is like a full time job!

It is a year since we went to Candice and Duncan's wedding in Mexico, a year since I started to get tumour progression.... a very difficult but rewarding year indeed.

What has happened in the year then?
More fund raising events: Reynolds Revival, second annual sponsored walk, 2 charity craft fairs! 2 of these events were whilst I was also undergoing chemo!
I had my photo taken by 'Rankin' for the 'Alive exhibition. (He sent me an A3 size photo and the actual exhibition print, plus signed books!)  I've been on TV twice talking about lung cancer and been in a Daily Mail article along with BBC reporter  Robert Peston. I won the Roy Castle Ambassadors award and I underwent 4 months of the most gruelling chemotherapy, put 10lb in weight on with the steroids and got most of the side effects including a big fat face! 3 more of my friends have died from this horrible disease, I think of them often :( ........  I have made friends with more younger NEVER smokers who like me have advanced incurable disease.  I realise though that under the circumstances I am truly blessed.

We had the whole family round for Christmas day ( we are doing it again this year) our one and only holiday this year was back to Mexico this time with my sister and brother in law, and was very much needed!

I have received more knock backs from ITV's programmes (they are never interested in talking about lung cancer) however CRUK wanted me to do a TV report for them about there research programme to help lung cancer. It's still a pittance compared to what they do for other cancers though but it's a start. I have also been asked to speak at the British Thoracic Oncology Conference in Dublin in January!

Health wise, I started coughing again 5 weeks after my chemo finished :( still coughing now. I'm having a Ct scan on Friday and if there is progression (I'm pretty sure there is, after 4 years I know the cough very well) I will have another biopsy, well 2 in fact. 1 will be to see if the tumour has mutated again or developed different mutations, the other to see if I have the PD-1 antibody. If I do I should be able to start the phase 1 anti-PD-1 trial in the new year. There are several Anti-PD-1 trials going on around the world all in different phases and so far the results are looking very promising, giving people another 1-2 years before the disease progresses again.  Keep your fingers crossed that I test positive!

It is so important that we keep spreading the word " you don't need to smoke to get lung cancer" that is the only way we will get the support, and research funding we need. There is a stigma because of smoking and no one deserves to get any form of cancer, but.....smoking does remain the biggest risk factor and passive smoking is also deadly!

We need to tackle the treatment of lung cancer in several ways!  Early detection does save lives but it is not as simple as that with lung cancer! Who do we screen? At present the plan is to only screen over 60 heavy smokers!  The people who complain to the GP of a persistent cough and get sent to see a specialist quickly are smokers! It seems to me the poor younger never smokers are being penalised for NEVER smoking! As most of you know I had been coughing for 17 months before I was diagnosed and even when I collapsed and they saw the 'mass' on my CT scan it was misdiagnosed and took a further 5 months for me to get a diagnosis! If I had a breast lump (which I once did) I was seen by a specialist within 2 weeks!

You can't screen everyone (money wouldn't allow it!) so for people like me our only chance is research into new treatments to prolong our lives. Although it's been a long time coming the research that is being done seems promising (I did so well initially because of Iressa - a biological chemo that treats people with a certain gene mutation) we just have to live long enough for the next new treatment to be licenced and approved by NICE! For this we need your support and your help in raising awareness!

Finished chemo amd having a break.......a bit scary though.....

Well it's been one hell of a summer! - not the same one for me as most of you have had.

I haven't actually seen any of it although I have felt how warm it has been. I started the 4 rounds of chemo (cisplatin/pemetrexed) at the beginning of June and finished it 2 weeks ago, and now summer has gone. I haven't been out and worn any of my summer clothes, my summer sandals bought in readiness remain unworn.

But.....I have finished chemo, what I can only describe as hell on earth, not something I would wish on anyone. When I say finished I mean finished (for now anyway) no maintenance to follow.

I have been extremely sick as the anti emetics didn't work and have literally felt like I was dying. I think emotionally it has also hit me how poorly I actually am. Because the Iressa (the targeted chemo tablet I had for the last 2 years) worked so well I sort of blocked it out of my mind that I was poorly and had a relatively 'normal' couple of years. This however has bought through all the emotions I probably should have felt when I was first diagnosed. I am seriously ill........I am dying......

I got the scan results this week.....I don't know what I was expecting....what I hoped for was to hear that the chemo had destroyed the cancer and there was no longer any left. I didn't get that.....I was told though that that never would have happened because of the Iressa. The first scan during these 4 cycles of chemo had showed 3mm shrinkage, which they said was good. This time no change, which they also said was good. (I have to believe that they are telling me the truth as it didn't feel like it was good news?!?). I really wanted to ask for a break of a couple of weeks before I started the maintenance chemo as I only really had 2 days that felt 'normal' between the last 2 treatments and I craved a bit more. I also hate the way the steroids have made me look, I have gained 6kg in weight! and have the typical big round 'Moon' face. I don't look like me :(. I was getting very depressed with it.

So what are my options? 1/ I could have the maintenance chemo (pemetrexed on its own) 20 min infusion every 3 weeks- would still have to take the steroids though. Or.......not have anything and have a break from all treatment, after all I have been on permanent chemo for the last 2 1/2 years! 

Apparently the difference in progression free survival is only 1-2 months, which means that it would only be 1-2 months extra time I would get being on the 3 weekly maintenance chemo before the cancer starts growing again, compared to if I just have nothing as at the moment my cancer is classed as 'stable' (That's why the scan was classed as being good, my disease is stable).

So I have opted to have the break! I really want some normality back and I want to lose the steroid 'moon' face! And have some 'normality' for a while :). I am also told that the longer I can survive as 'stable' the better my chances of staying stable are. So If I am still stable at 3 months, the chances of reaching 6 months are high and so on. I will get a CT scan every 3 months or sooner if I feel unwell or become symptomatic.

Afatinib is not a option at the moment as the disease is stable and I need to have progression to get it. Even then it is not set in stone :(. Although it is now licenced, it is not yet approved by NICE. The only option maybe to have to pay for it, that would be thousands that we don't have, but we will cross that bridge if/when we come to it.

There are other options like other chemo's and clinical trails and even try Iressa again or Tarceva.

For now....I am slowly getting over this last chemo and when I get to the day I feel normal again I shall  be making the most of every normal day I have. That includes a much needed holiday. I am keep everything crossed that 'stable' becomes my best friend and that it's going to be a long relationship :)

Positive post while I'm buzzing!

Got to write this now for 2 reasons:
1/ I can still remember the 2 'good' days I have just had and ....
2/ I am buzzing fro all the steroids I had pumped into me yesterday so I have the energy at the mo to do it!


......the one thing I don't have though is the ability to spell or even notice things are spelled wrong so you may just have to guess what I mean....I'm blaming that on the steroids as I am trying with 2 fingers at a speed you cannot imagine and I mean FAST!


Yesterday had the LAST of my BIG chemo sessions, the last one ever of that type anyway, will still have to go every three weeks now for maintenance. That is providing this has worked, have scan on Tuesday or Wednesday next (can't remember off top of my head). Told Paul that I may need a wheel chair though to get me there as it is early days after chemo lol.

I then see oncologist the week after to get results and all being well I will start pemetrexed (Alimta) maintenance chemo. I am hoping for a break if a week or so, so that I can feel pretty much like 'me' when I start it than I don't think it will be so hard.

I will do this until it is no longer working or my blood counts are not recovering and I can no longer take it. Then hopefully I will be able to access the new targeted drug Afatinib. Afatibib is not 'approved' by NICE yet although it is in the process. It is however available on compassionate grounds (when all else has failed) through the cancer drugs fund. This is the fund that the current government are trying to abolish! So...we are hoping for one of 2 things, by the time I need it, it will be 'approved' or 2 the cancer drugs fund is still in existence!

I have so much to live for the main thing at the moment is to see my lovely daughter get married, and to be 'giving her away' to her wonderful 'fiancé' who I know will love her and take care of her. <3

I do feel also I need to take some time her to apologise to anyone who feel my recent posts have been a little abrupt/aggressive maybe and not really like me. Please understand that my body has been pumped with 'poison' for want of a better word and lot's of strong steroids! (if you don't know what they do 'google' it Dexamethasone). It's not until the days I feel like me again that I think oops maybe I shouldn't have written that, but at the time it's a different story.

So for the next few weeks something I write may need to be taken with a pinch of salt.....

On the whole I am still positive and I have to hope all I have been through/still going through will be worth it :)