Return to the Bucket List.

The past 12 days Ive spent lying in bed, unable to do very much, feeling totally vulnerable and completely reliant on others for the most basic of needs, have been so frustrating. Its no wonder Ive felt so despondent at times - and then very angry with myself for feeling this way. Its been a vicious circle of pain relieved by morphine which has sent me a bit 'loopy'.

However, we have discovered that 'Entonox' (the 'gas and air' stuff that ladies use in labour) is really effective for when I have my traction changed. Its quick acting and short lasting so I don't spend the rest of the day floating around on 'Planet Morphine' having interesting hallucinations and conversations with people who don't exist! Its not quite as good at relieving the pain, after all this is a broken femur we are talking about, but it takes the 'edge' off it so I can bear my leg being moved whilst the bandage and traction is re-applied.

Talking of the 'break' I saw it in all its glory on the xray/scan and a right mess it is too. Not a clean break at all, both ends of the bone have crumbled and split into many pieces. No wonder its so painful when I'm moved with them all grating against each other. Mr Tillman is going to tidy up the ends, remove the bits of tumor and then insert the bionic femur - and I will be better than new ! I also saw the tumor in my right femur which is much smaller, contained within the cortex so the bone is intact, and looks fine - to me anyway. Obviously we will be keeping an eye on it but it looks as if we have caught it in time.

I'm just finishing week 4 of Afinitor and all the signs so far are that it is working - and working well !! No growth in the tumors I can feel and the only side effect I have noticed is a sore mouth. I'm having some blood tests done tomorrow just to check things are going well, but I am allowing myself to be really optimistic that Afinitor is working as a sequential treatment for me. And what fantastic news this is for every KC patient here in the UK.

So there we have it. I'm back on track again after a short but fairly nasty deviation! And now I feel I'm ready for some kind of challenge - something to test out my new bionic leg and to renew my faith in 'me'. A return to my 'Bucket List' is called for I think.

My 'Bucket List' -things I want to do before I kick the bucket - has been sadly neglected of late. There are several small things left on there - and one BIG one. So Ive decided to go with the big one. I may as well. I think a BIG one is needed right now after all Ive been through.
One last adventure.
One last fling at the world.
But where?
There are still so many places I would love to see.
And more importantly how? Martin keeps reminding me I need to earn some money or I shall bankrupt him before I pop my clogs!! Ill start to save seriously now and who knows maybe some magazine/news paper would be willing to sponsor me as a cancer patient to write about my experience?
So - where would I like to go for this final big trip?
There can be only one place, one final frontier for me - Canada. The Rockies and the Inner/Outer passageway up the coast visiting the towns made famous during the gold rush, Skagway etc. A spectacular trip all round but most importantly its the last Great Wilderness for one last great adventure.

A chance to prove a cancer patient CAN.

And for those of us who arn't going to win the final battle in this war, we can show that, even in the process of losing it, we can gain such a lot.

To Afinitor and beyond......

Ok yes, I know, I know - it's a dreadful pun but I simply couldn't resist it !

I have just, this minute, taken my first dose of Afinitor. And this morning I had my first infusion of Zometa - and my 3rd dose of radio therapy. Starting one new treatment can be a bit daunting but three at the same time is definitely the most 'challenging' thing Ive done so far!

I decided I would go to the hospital on my own - I had no idea how long I would be there, it could have been most of the day as far as I knew, and it didn't seem fair to ask Martin to take the whole day off work just to hang around in the waiting area. He has already spent what must be days there already, bless him.

At 9am sharp Dr. P called me into his room where he was ready with the head pharmacist - and my Afinitor. I know it sounds silly but I was actually really excited to see the two big boxes on his desk, two months supply, with my name on them. My blood results had come back and they were normal so there was no reason I shouldn't start taking it that evening. The sooner the better as far as I am concerned - lets just get on with it. We then spent some time discussing the dose and possible side effects, which arn't dissimilar to Sutent although Afinitor is generally better tolerated. Afinitor is taken continuously, you dont have a break or cycles. 10mg a day. Side effects can include fatigue (yes, know that one), lung problems such as shortness of breath, cough etc... It can also increase your blood/glucose levels and cholesterol so regular blood tests are needed. A sore mouth is pretty common, something I had when on Sutent during the early cycles. Afinitor makes you immunosupressed so more likely to pick up infections - and you cant have any live vaccines whilst taking it. I guess that means I wont be able to have the flu jab this year, Ill have to check with my GP and see what he says.



So - not too bad then ! (she says, hopefully) As with any new drug the side effects will differ from patient to patient so I will just have to see what happens when I take it. We then spent some time discussing how I was in general - particularly in regard to the horrid effect steroids were having on me. I'm still retaining water, my feet and hands are very swollen, and I have the typical 'moonface'. I can start to reduce them slowly later this week when the last bit of Sutent should be finally leaving my body and my joints start to recover.



Apart from the lump under my right boob, which has grown and is now the size and shape of a large avocado, all the others appear to be the same - but its been a few months since my last CT scan so Dr P has booked me for one - its a good idea to have one as I start Afinitor anyway. And that was that. Big smiles all round as I left and pottered round to the radio therapy department clutching my bag of Afinitor. I felt ridiculously positive - and more than a little lucky. I'm not sure lucky is the right word, but everything seems to have happened at exactly the right time for me and I thank God for it.



Radio therapy was a new experience for me - I knew nothing about it really, except it uses radiation to kill off cancer cells. I didn't know, for instance, that a 'mould' is made of your legs and bottom to make sure your bones are in the right position every time you have treatment. A 'mould' of my bottom for goodness sake !! And its bright red !! I also have dozens of tiny black tattoos on my legs and chest wall which are lined up with the machine, again to make sure I'm in exactly the right position. Getting me in precisely the right position on the table, and it has to be accurate to within a few millimetres, takes about 20 minutes - the treatments, 3 of them, only take about 5 minutes altogether. Its just like having an xray - it doesn't hurt and you don't feel anything apart from being uncomfortable lying on a hard table for a while. For me the main benefit will be pain control - but it can make things worse before they get better and indeed that seems to be the case. Depending on which part of the body being treated you can also have other side effects but the main one is extreme fatigue yet again. Which will be great as far as I'm concerned as I'm still not sleeping very well !



Two down, one to go. Zometa is given as an infusion in the chemotherapy department so it was another short toddle round there. Ive never been in this part of the cancer centre before so was surprised to see how big it is. There were at least 20 other patients sitting in big reclining chairs having their chemo. I must have had my 'rabbit caught in the headlights' look on again because the nurse looking after me made me a cup of coffee and sat and chatted to me for a while before trying to get a needle in my hand. It only took her three attempts, I was very impressed. And then a teeny bag of Zometa was dripping away - I felt a bit of a fraud looking round the room, all the other patients had big litre bags of chemo and there was I with this tiny little thing that only took 15 minutes to run through ! A quick flush and it was all over - apart from discussing yet MORE side effects. 'Flu' type symptoms for the first few days, fatigue (!), nausea and vomiting, bone pain - in fact the 'usual' suspects ! Its also advisable to take vitamin D and calcium supplements. I was given my next appointment for 6 weeks time and that was it - all finished. It was only 11.30am - everything done and dusted in two and a half hours and I could go home.



I felt ok-ish. A bit shaky from all the poking and prodding and my legs were aching badly, but generally alright. I spent the rest of the day trying to take it easy and watching and waiting for something to happen but it didn't. Apart from the pain in my legs which I was taking oramorph for every 4 hours everything was fine and I even managed a nap in the afternoon.



And I have just taken my first dose of Afinitor - I remember taking my first Sutent, sitting there and waiting for something to happen - not knowing if it was going to work or not.



I'm a bit apprehensive to say the least about the next few weeks - I know its going to be tough - I know its going to be hard work staying focused and positive. But Dr P obviously thinks I'm capable of coping with it. And I have all the support I could possibly need so I'm just going to grit my teeth and plough on through it....and concentrate on the benefits I should feel in a few weeks time.

Talking of support I want to thank everyone for their comments on this blog. You have no idea how much they mean to me. If I'm having a bad day reading them gives me just the boost I need to keep going, keep fighting. Knowing I have so many 'friends' out there, whether personally affected by KC or not, gives me such strength - and not just me either, Martin loves reading them too

I'm utterly convinced that soon, very soon, we will find the right path to deal with this horrible disease long term.

Afinitor

Dr P. and I at the launch of Afinitor.

The official UK launch of Afinitor was held by Novartis in London on September 16th and Dr Porfiri and I were invited to attend. Naturally I was very keen to go - Afinitor is the drug which has been developed specifically for when Sutent fails to work, or stops working. I didn't know at the time how close I was to needing to myself though.

Dr. P and I took part in a very informal 'sofa chat' with Dr. Scott from Novartis in front of what must have been 80 plus reps and other employees. 'Jane's Journey' was shown (I still get a bit tearful no matter how many times I see it) and I spoke about how important and precious the past 18 months had been to me and my family and friends, how having access to these new life extending drugs was giving us KC patients a real hope for the future, the fact we may have a future after all.

Dr P. spoke very movingly about his job as an oncologist, how he can now treat all his patients with some of the latest drugs now (although three are still denied funding by NICE) and how pharmaceutical companies such as Novartis are researching and developing new drugs right now, in fact there are 28 new mRcc drugs being trialed in the US right now.

Afinitor is now licensed as the approved second line treatment for mRcc when other targeted therapies have failed. It works in a slightly different way to Sutent in that it targets a protein in the cancer cells which affect cell division and blood vessel growth. To be honest its all a bit complicated for me, but the main thing is that Afinitor works - and it does. It more than doubled the time without tumour growth or death in its trials.

Afterwards, during lunch, I had the chance to meet and speak to most of the Novartis team. I have to say I was completely overwhelmed by the drive, determination and commitment to their work they showed - particularly in regard to Afinitor. As patients I don't think we always appreciate the work that is done on our behalf - after all, this is all for our benefit at the end of the day.

When Martin and I left later that afternoon it was with a real sense of inspiration - and a real hope for the future. There may well be that we have yet another fight on our hands with NICE to gain approval and funding but I'm ready for it - because this is a battle that we MUST win.