BOB JK My diary of kidney cancer (to be continued)

Hi Bob, I am a fellow Royal Marsden patient. I have bene on sutent for 18 months now. I had an initial shrinkage of my two known tumours in the region of 20% and then after that a very small shrinkage and since then the tumnours seem to go "up & down" some areas shrink some areas enlarge. Early this year I had a diagnosis of some dead tissue and I thought the tumours would die, wrong, they are hanging in there. My last two CT scans have shown an enlargement of my tumours in places but they are less "dense" and becoming fluid in those places. Apparently this is really good although I am not sure why.

I like you have had a recent trip to the Marsden and my wife Lin had got quite excited about the possibility of "cyberknife" which is coming to Harley Street next year and which is used as an alternative form of op on tumours that are hard to get at. Mine are hard to get at. Lin was convinced I could take my sutent and have cyberknife and she felt a bit optimistic about that as the tumours worry her - especially where they are. Anyway my Consultant completely blew that one out of the water and since then Lin has been really down. Unfortunately my consultant did not explain why I could not undergo this treatement but I found out from my nurse that like you I would have to come off sutent and as its working thats not a good idea.

Its all a minefield isnt it? I try to keep myself as well as possible, eat the right sort of foods (not always though), get the right amount of sleep (now and then) and just keep going. I am encouraged by people I know who have been on sutent for years now and continue to do well. I know a guy in Canada who is on a permanent 37.5 dose and has been alive with MRCC for 6 years. Its all a lottery isnt it but recently my Consultant spoke about new trials to see if sutent with another drug could provide a better prognosis or alterantively sutent followed by avastin and then perhaps nexavar and torisol. In the states they have Everolimus (RAD001) which currently has orphan donour status in Europe but in France they are looking at marketing status. So there is much happening out there and we just have to keep going in the hopes that we will benefit. I get low sometimes and then I pick up I like you am really glad to be alive.

Regards

Baldeagle

Hi Fay

Im so glad your holiday in scotland went so well. Considering it clashed with the worst part of your cycle you done extremely well. I have head that scotland is a beautiful place and hopefully sometime Linda, Kate and I will see for ourselves what a lovely place it is. It sounds as if your hospital visit also went pretty good. Stable is good but further shrinkage is brilliant. Well done for that. Its not very often I get down and I am angry with myself for that. I like you consider myself so so lucky to be on the Sutent and while it is still doing good , it makes sense to stay on it. My point was that I was lead to believe that an operation at this stage would be good for me, but I can now see that this is not the case. Also your Oncology nurse is right, it is so difficult to give an accurate prognosis given the development of new drugs ( that is of course assuming the "NICE" team approve them) On this subject I will be making my views known at london and I urge all of you who can to do the same, or to send letterws and emails to the "NICE" HQ. thanks QAnge for your help on this.
Good to her from you and take care also.

Hi Baldeagle good to hear from you and many thanks for your input into my diary. I am very encouraged by the fact you have been on Sutent for eighteen months now and still on it. I have not heard of cyberknife but as you say in your post, while the Sutent is still doing its job, best leave well alone, at least that is the conclusion that I have come to. It seems to me, certqainly in the case of my consultant that they give you hope by suggesting treatments before discussing it with the surgical team. It is certainly a minefield and all you can do is try and eat well and do as much as possible, but listen to your body when it tells you it has had enough and needs a rest (not something im very good at) . Its very interesting about the guy in Canada and again gives us all hope to be around when the next wonder drug is introduced.

Good to speak and please keep in touch,

Bob Jk

Well ive returned back from centre parcs today and we had a really good weekend. Although I was limited in what I could do I still managed a bit of walking and some cycling. We ate some good food and it was good for Kate to spent time with her cousins. I also spent quite a lot of time watching the olimpics and didnt we do well. I would love to be around for the 2012 games in London and god willing I will be. Since getting home Linda has been busy unpacking and washing, and after a small sleep, I got to work in the garden cutting all the lawn and , with Kates help, watering the flowers. Then I took Mollie for a walk. I certainly feel refreshed and ready for battle so bring it on. Myself and Linda have worked hard to achieve what we have achieved and ill be damned if I am going to throw all that away. This is the start of my second week off the Sutent and I am also not taking many other drugs at the moment. Apart from fatigue I can honestly say I have no other pain or problems at the moment. "It really is good to be alive"

We had a really difficult night with Kate last night. She is not daft and I think she probably knows that im not going to get better. We did lots of talking about heaven and how we would like heaven to be. I told Kate that the doctors are doing a brilliant job and that I am at one of the best Cancer hospitals.
I also said to her that I am not afraid of dying in the hope that it will make her feel a bit better abd help her to deal with it. I told her that we have hopefully got lots of time together yet and that new treatments are always being sought after. Linda and I need to read our books but I dont think any book can really prepare you for this.

Hi Bob
will you be going to the NICE headquarters tomorrow? If so, I'll see you and anyone else from this site there. The media coverage is gathering apace and it seems to me that NICE are starting to get really rattled.
My husband has no side effects whilst on Sutent, but as soon as he comes off it he goes into a decline, really fatigued, feeling ill, coughing incessantly, aching all over and in more pain in his back. Once he restarts the cycle, his appetite returns and all the other symptoms diminish. I can't find anything online that corresponds to his pattern.
We are so grateful that he was able to get the drugs and are very thankful for the inbetween weeks, but Gary now says he wants the oncologist to consider his taking possibly a lower dose but all the time. His prognosis is very poor and we are living in the here and now, so daily quality of life is what counts.
Meantime. I'm going to demonstrate for others to be given the chance my wonderful man has been given
see you there
Ange

Hi Ange I cannot go to London tomorrow but I have already emailed my thoughts to "NICE". Good luck to you and everybody else. We must all keep fighting and keep the pressure on.

Hi Bob
I cannot believe how selfish I was not to respond to your posting about Katie.
What you are doing is giving her a wonderful fund of shared, good memories and an honesty in your relationships that will lay the foundations for her future happiness.
She will draw on those memories at low times and they will always be there for her.
I can't imagine having to deal with the feelings of and for such a young child in your /our situations, our daughter is 26 and that is hard enough, but however awful things are, be guided by your love and and know you are being true to yourselves
with the very best of wishes
Ange
ps and I'll give one to NICE for you!

Hi Bob,
Nice to hear from you again and glad you are feeling a lot better, you sure do seem to be a very busy man and its good you are still able to do the jobs you can do, my energy levals must be lower than yours but its always a great feling when you can do physical jobs that need doing its make me feel almost normal if you know what i mean.
I have just read your holiday diary and it sounds as though you had a brilliant time which im sure made you feel better and its all cherished memories for Linda and Kate. Id love to go on a cruise maybe some time in the future.I always make copies of our holiday films to give the family as momentos so they have somthing to look back on.
On the subject of NICE Jon mentioned a good point we all pay our national insurances (and HAVE to pay ) so that when the time comes we get the treatment we need so in a way contracts have been broken. Its drives me mad to think of all the poor people who cant get the cancer drugs, its bad enough being told you have cancer but then to be told there are drugs to help but you cant have them,
Well ill have to sign of now and get some more emails answered, all is ok with me and im just waiting to get my usual skript from my GP and then were off on our travels again, and yes youve guessed it were going to Scotland, Im not sure what day so ill be in touch, stay strong and give my love to Linda and Kate. Love Fay.

Although we had a bad night with Kate the day has been better and tonight she is sleeping over her friends which if she manages the whole night will do her good. She needs to know that she can leave me and enjoy herself. I do not want her missing out on her childhood because of my illness.

Good luck to all who make the London protest, my thoughts are with you all.