Sunday, 27 September 2009


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.

Saturday, 26 September 2009

Goodbye Sutent - Hello Afinitor !!!

I have turned into a zombie.

I'm not sure if I will be the flesh eating kind yet but it stands a good chance with the appetite the increase in steroids has given me.

I'm hardly sleeping at night - hardly sleeping at all actually, just a couple of snatched hours here and there during the day. The nights I spend either on here, reading and trying to distract myself, watching late night telly - which can be dreadful or surprisingly good depending on my mood - or lying, gently seething, at the snoring body in the bed next to me. Its not Martins fault I cant sleep of course, but there is nothing more irritating when you can't than to have someone next to you who is having his full 8 hours.

And the reason I'm not sleeping?


Pain in my feet, my knees, my thighs, my side, my times it seems its just everywhere it so hard to differentiate where its coming from. I saw Dr. Jill at the hospice a week ago when this was first beginning to be a real problem and she increased both my steroids and my MST. This seemed to help for a few days but now its back again with a vengeance.

Sleep deprevation is awful - it exacerbates absolutely everything. Thinking straight becomes a real problem. Making the simpliest little decision can take on the magnitude of a 'Who wants to be a Millionaire' question. Without the phone a friend option. Tempers get frayed (mine) and people wisely avoid you (Martin and the kids - and even the cats keep their distance now).

It sounds pretty hopeless doesn't it but there is a glimmer of hope on the horizon. Last Thursday I went to see Prof. James at the QE clinic to see about my having some radiotherapy. Everyone here was busy working except Edward who had a free afternoon from college so I took him for company this time. Surprisingly he agreed without much of a fight.

It was strange sitting in the clinic waiting but not for Dr P. this time. He was there busy with his testicles and prostates and when he saw me he came over with some brilliant, amazing news.

I have got Afinitor !!!

I could have jumped up and kissed him - except my legs were hurting !

It took a while for the news to sink in. I've just started on cycle 19 (or is it 20? I cant remember) of Sutent and this will be my last one. Next month I will start Afinitor. A new drug which works in a different way and has been developed especially for when Sutent doesn't work or stops working. New over here anyway, it's been used in the US very sucessfully for a while now of course.

I was still grinning like an idiot when I went in to see Prof. James and what he had planned for me made me even more positive and hopeful and SO encouraged. This week I'm starting radiotherapy on my legs and the lump under my boob - 10 days of intense treatment and it is specifically to help with the pain I'm getting and may even slow down the growth of these tumours.

So - radiotherapy for 2 weeks to help with pain and slow down tumour growth. First infusion of Zometa to strengthen bones on 8th October. And then starting Afinitor at the end of October.

This is what I hang on to in the dark, early hours when I cant sleep......

Thursday, 17 September 2009

Behind the painted smile....

Caroline and I clashing horribly at the launch of 'Jane's Journey' !!

Its been 4 weeks now since the launch of the film and kidney cancer awareness campaign - and a pretty amazing 4 weeks it has been. I'm almost getting used to seeing articles and pictures of myself in the press or even on the telly now - but it still comes as a shock when a total stranger comes up to me and says "I saw you on the telly/in the paper/read your blog/watched the film - how ARE you?"

This happens a lot now, especially when I'm out locally. Its nice. For one thing it shows just how effective the campaign has been so far, and continues to be. How many people it has reached. In fact it has been calculated that it reached 45 million people world wide !!!

45 MILLION !!!!

It seems such an incredible number but when you think about the film itself being on YouTube and linked to so many Internet sites - kidney cancer, cancer awareness, medical and health web sites, Facebook groups, blogs, news etc... all the radio interviews, national and local, rolling news on Sky and ERBU news, its not that surprising the message has reached so many people. And its an ongoing process - there are still a couple of major pieces to be published, one in a well known women's magazine.

But as I said, its locally I really notice it. If I'm out shopping or at the hospital or in the bank there always seems to be one or two people who come up and start chatting to me and of course they always ask how I am....and say how well I'm looking.

I am looking well, especially with a bit of blusher and lippy on. And generally I do feel well. But as I sit here in this no man's land of waiting for my radio therapy and Zometa infusions to start, and to find out if I have funding for Afinitor, there is a small bubble of panic rising up from below the surface. I'm in the last few days of my Sutent cycle and yet the tumour under my right breast has grown very noticeably in the past week or so. And is now once again very painful. So it looks as if Sutent has stopped working on this one at least and I have no idea whats happening inside me. Hence the panic. Dr P. has arranged for me to have some radio therapy on it as well which should help with the pain at least but its only a stop gap - I need a treatment to stop the bloody thing growing. Its almost as big as what's left of my right breast now !

All I can do right now is keep as well as I can, stay positive and have faith in Team Jane who are working so hard on my behalf. And thank everyone for all their good wishes, emails, messages of support and comments on here.

And yes, if you see me in the butchers please come up and say hello, right now especially it means an awful lot.

Thursday, 10 September 2009

Some good news for a change !!

I didn't really expect to feel much benefit from the blood transfusions I had. I was asymptomatic I thought. No shortness of breath, no tiredness (well no worse than usual!), I didn't look anaemic. So it was a lovely surprise to wake on Monday morning feeling wonderful !! Bursting full of energy and all bright and breezy. I guess it had been a slow process and I hadn't noticed the gradual effects of being anaemic. What a difference it has made though - I'm sure I was given 3 pints of Linford Christies blood !!

Tuesday morning and off I went for my MRI scan. This was a first for me, Ive had loads of CT scans but didn't really know what to expect with an MRI. The first thing is that you don't need any 'prep' for it. No nasty drink the night before. And no nasty, stingy injection during. But as far as scary, noisy procedures goes it wins hands down. An MRI scanner is a long tube which you are slid into - completely if you have your whole body done. I only needed my legs doing so was lucky enough to have my head poking out of the end. The end of the tube was only inches from my nose though so it must be very claustrophobic if you are right inside the machine. The worst bit is it its so NOISY. Its like having major road works being carried out right next to your head. I was given some head phones to listen to the radio with which did help but for the 20 minutes I was in there the back ground banging and thumping was still clearly audible.

I didn't have long to wait for the results - I had an appointment for that afternoon. That's pretty impressive isn't it? Martin and I arrived on time, and were immediately shown through to the consulting rooms to meet Mr Tillman - the surgeon on Mr Grimer's oncology team. He brought up the MRI scan on his computer - it was a view of both my femurs looking upwards as if from my toes - the bones showing as two dark circles like doughnuts. The right femur looked fine with the tumour visible in the middle bit, the cortex where the bone marrow is, but the surrounding bone unaffected. The left one showed the bone to be thinner with a small break in one area where the tumour had burst out. But basically the bone itself looked pretty good to me.

Mr T. agreed. Not as bad as we originally thought. Wow !! That has to be a first for me !

He then went on to say we have 2 choices. Either an operation which would entail having the affected piece of bone cut out and a metal rod inserted. Quite a major operation really. Or to treat it conservatively with radio therapy and the infusion of Zometa to strengthen the bone.

I asked him what were the chances of my leg breaking if I decided not to have the operation and he said he didn't think it would - unless I had a fall or something. And then even if I did he could still perform that operation.

So as far as I'm concerned the decision was an easy one. I'm feeling well right now and don't want to risk a long recovery process, the risk of infection etc... and more to the point, being off Sutent for an extended period of time, which I would need in order to have this operation. That is far riskier than having my leg break.

Although it was my decision it was nice to hear Mr T. agree with me. I shall have another MRI in 3 months time (it is SO good to hear a doctor confirming I could well still be here in 3 months time!) to see how the infusion is working and review the need for an operation then.

It looks like I'm having a bit of luck for a change - and it is about time isn't it?

Tuesday, 8 September 2009

Blood and more....

James and Grace at the launch of 'Jane's Journey'

Saturday morning, nice and early, came the call from the QE hospital - a bed was available for me to go in and have the blood transfusion I needed. Brilliant - plenty of time to get 3 units in and be home by late afternoon. Martin dropped me off at 9.30am and then carried on to his golf competition which was due to finish at around 4pm, so perfect timing. Or so I thought.

The first sign that things may not go according to plan was when I arrived on the ward to be told that, yet again, I had been assigned to a bed on the 'Young Persons Unit'. Not that it really bothered me, a bed is a bed, but there is nothing guaranteed to make you feel old than to be surrounded by a load of teenagers....playing 'Guitar Hero'.

I had some blood taken for x match and a very competent young doctor got a cannula in a vein in my hand, first time too - so we were all set by 10.30am. Just had to wait for the blood to come from the blood bank. And wait. And wait.....

Lunch came - which was absolutely horrible. It was apparently fish pie but I'm sure nothing that ever came out of the sea was in it. Followed by semolina. No wonder the kids on the ward were sending out for MacDonalds.

Finally, at 2pm, my blood arrived and the first unit was put up. I did a quick calculation and realised that, at 2 hours per unit plus a bit to flush each through, I would be lucky to get out this evening. And that was if nothing went wrong. Which of course it did. This is me we are talking about after all !

I settled down for a nice doze and was just dropping off to sleep when I was shaken awake by the Mum of another patient - I was lying in a pool of blood on my bed. The connection between the line and the cannula hadn't been tightened properly and instead of the blood going into my vein it was pouring out on to the bed - and all over me !!

Fortunately this was quickly sorted out by a nurse, me and the bed were cleaned up, and the transfusion was started again. All went well after that until supper time when I was subjected to the awful food again. I was absolutely starving by now and would have eaten almost anything but even I couldn't face the unidentifiable gloop on my plate.

My third unit finally finished at 10pm and it was with a huge sigh of relief that I headed home - and straight to the fridge !!

Friday, 4 September 2009

St Mary's.....Live!!

It took Mary, my Macmillan nurse, 18 months of gentle persuasion to ease me through the doors of my local Hospice, St Mary's. Not because I was scared of the place, or because I thought it was a place for the dying only - just because I wasn't ready for it then. But I am now.

I attend the Day Unit here every Friday - and what a revelation it's been. I have a ball here !! We get seriously spoilt and pampered with aromatherapy and massages, there is a hairdresser here if you want your hair cut or just washed and blow dried (Kim is really good too - she cut mine beautifully last week), there is a library with books and magazines and lovely comfy easy chairs to just sit in and relax. But best of all is meeting the other patients, who quickly become friends. I'm the youngest by years but that doesn't matter - we have a laugh and a gossip and rarely talk about our illness's. We know we are all in a similar position and that makes it easier to relax in each others company. The food is really good - its cooked here on the premises and the best 'hospital food' Ive ever had.

The Day Unit is run by a small group of nurses and some very special people - the volunteers. These ladies come most days and give their time to make us coffee and toast, serve the lunch and organize things like quizzes. And again they quickly become friends. My little group is just 10 strong, the eldest being a lady of 94. We are a bit short on the men side though with just 4 of them.

The nurses are there to help us of course and in case we have any problems with our medication or we need any help from the other services which operate from there, like the Occupational Health or Physiotherapy department. And there is always a doctor there too if we need to see one. So all in all it's a great place to be for the day and I really look forward to going.

Things are moving on the 'leg' front. My MRI scan is booked for Tuesday morning - and in the afternoon I have an appointment to get the results and hopefully find out when they can operate. And yesterday I saw Dr P. for my usual check up. Everything is ok except my Hb has dropped again, to 8.2 this time. So I'm going into hospital over the weekend to have a transfusion...or two...or three!! It needs doing because the surgeon wouldn't take me to theatre with such a low Hb. It's just a case of timing now - I need to be on a break from Sutent because it can affect the healing process. I'm on day 14 of cycle 17 right now - so the perfect time for an operation would be in about 2 and a half weeks. Fingers crossed it all works out. After the operation I'll be having radio therapy on my legs and a 6 weekly infusion of a drug called Zometa which helps to strengthen bones.

The best and most exciting piece of news Dr P. had for me is that this week he is applying for funding for Afinitor (Everolimus) for me. This new drug is the natural progression from Sutent for when that fails or doesn't work. Although Sutent still appears to be working, the tumours under my arm, on my scalp and on my ribs don't feel as if they have grown, I'm still getting a lot of pain in my knees and thighs - a side effect which seems to be here to stay and means I'm still taking MST, which I would love to be able to stop. After all I've been on Sutent for 18 months now so I think it's the right time. IF I can get funding of course.

All in all there is an awful lot going on 'Team Jane' wise right now - but all of it positive and so encouraging. I'm still being treated with the aim of fighting my disease. No one is giving up on me yet. This gives me such a tremendous boost and makes me more determined than ever because with the very best doctors and the very best treatment the NHS can provide who knows what is possible?