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

Hello Bob,

Firstly the very best of luck tomorrow and hope they will let you keep going at work as long as you want to. Mmm snow we currently have 28cms on the ground, had more forecast this evening, but has not materialised thank god! Was my youngest daughters 8th birthday today and she loved having a snow day but not so much the fact that post was a bit thin on the ground and I had to make do with what provisions I had to scrape together a cake! Its not going any where either and we are forecast much more Sunday/Monday, its half way up my calfs now without any more and my poor Spaniel has to leap to get any where......who am I kidding he's loving it! Can see me having the kids home for the forseeable future, good job lectures are cancelled too. Poor mum lost her electric at 5pm yesterday, got it back about the same time today. Was really worried about her getting too cold thank god they have a gas cooker! If it hadn't come back on my friend and I with the help of her 4x4 truck were going to mount a rescue mission, she is 1/2 hour away on a good day!

Stay safe, stay warm, stay fighting.

Diane

Hi Bob,

Glad to read you are still fighting the fight and doing well at it. Im sorry to say im not doing to good, it all started about 6 months ago when the side effect from Sutent was getting worse, really tired all the time, out of breath and not being able to walk very far without needing oxygen, infact when i look back now i wasent really living just existing so much so i had a cant be bothered head on me thats why ive not been on this site much. Prof Hawkins decided to reduce the tablets to 3 a day for 2 months but after my scan showed tumours to have grown, so as i was also having blood transfusions every 2-3 weeks he said have a break and build yourself up. I went back on the 14th Dec and it had been decided that Sutent wasent working anymore so it was time to treat me and give me a better quality of life as appose to treating the cancer, to say Jon and i were devastated is putting it mildly we were sure he would sugest the follow up drug thats always mentioned, when we asked about it ( I think its called Everilmus) he said the side effect were really bad and as you only get 5 months effect from the drug they dident think it was worth it, apparently it causes damage to the lungs and as i have a little bit of fluid there it would hinder rather than help. Having said all this i can decide myself if i want to try sutent again or go on the new drug, as some people have a Sutent holiday as its called. I am now on Steroids and i feel great except for feeling bloated and having a moon face im completly back to normal and doing normal things like shopping i havent been able to do for months.Im back at the hos on Mon morning and then ive got my Mcmillan nurse mon afternoon so i may find out more as to how long the steroids work ect . I think ive come to terms with my news and im am getting my life in order and as soon as this snow melts we will be on our way in the motorhome again hopfully living life to the full.

I was quite interested Bob to read your Pro Gore mentioned a after Sutent drug,do you know anything about it?Id be really curious to know what he is sugesting for you when you need it.

I hope this message finds you as well as you can be, Jon sends his regards,

Love Fay.

Hi Fay, My regards to Jon and of course yourself.  Im sorry the Sutend side affects have become to much for you, I can totally understand how difficult it is and have a couple of options in mind.

Proffesor Gore mentioned to us that a patient of his had, unknowingly to him, stopped a pill per mid week and was coping better so might be worth a mention as this did not seem to affect the effectiveness of the Sutent. Also did you know you can tale 12.5 doses 4 times a day which means you do not get that one high dose all at once.  Proff gore did not tell me the name od the drug but when im back to him I will ask. The only other one I know that is a after Sutent drug currently being used is  Afinitor.  Good luck and make the most of that break.

Bob

Hi Diane and thanks for the good luck wishes. you have certainly had a lot of snow there. I will be setting of soon with Linda to take Kate to school and then myself to work. We have had a bit overnight but not too much by the looks of it. Our dog Mollie also loves the snow and cannot wait to be walked in it. I wish I could say the same for myself.. Hope you have a good day

Sir Bob, hope your day goes ok, and that Mollie didn't take you sliding too much, it sounds like most dogs love it, son's Westie certainly does, he has to bath her virtually each time she comes back after racing around in it, she gets so much tangled up in her legs and long hair underneath, as she is clipped in proper Westie fashion! Hope Kate enjoys being at school, and that her session with counsellor went well for her this time.

Fay, so sorry to hear that the Sutent is doing this to you, and I hope that Sir Bob's advice helps.....he is getting quite an expert! 

my love and hugs to you all

Thanks for that Bob, its given me a bit more hope. Ill mention what you said when i go the hos Mon and let you know.

Thanks for your good wishes Moony, Love Fay X

Today has gone ok,  After a really good nights sleep I awoke refreshed and ready for work, well that was until I looked out of the window and saw the snow and frost. Luckily Justin had already dragged Mollie outside and she had taken him for "walkies".  Myself and Linda dragged a disappointed Katre out of bed and told her that her school was still open at which point she again wished she lived in Scotland. After the usual round of tantrums and crying (and that was just Linda lol) we eventually left the house and skidded our way to Kates school. I was froze so Linda took kate in to school and then myself in to work. I felt as desolate as Kate when I got to work but one there I was fine and managed to get a lot done.  A lot of talk about changes at work but so far, non applying to me, but it will come im sure. Now im home and after a nice chicken and rice tea, with a rather hot sauce than can only be bad news for Linda later on, its time to relax. I cannot seem to stop eating but am slowing down now. I would watch a good program on sky HD but since we recorded a program for kate new years eve the thing hasnt worked properly and despite calling almost daily it now seems that snow might be the problem, by nature of the fact the I.T  department dealing with our "fault" is based in Scotland.

Not such a good nights sleep last night as Kate awoke having a bit of a nightmare and the only way to calm her down was to get in her bed and cuddle her. I think after an hour she eventually dropped off  and I slept with her for a bit until she started kicking like a mule so I move back to my own bed" where Linda started kicking like a mule, like mother like daughter. Eventually I did sleep though. Once awake again I took Mollie for another slide in the snow and then we hit the sales. I got Justin to come as well so that Kate and Linda could hit the clothes clothes whilst Justin and I hit the bacon buttie stall on the market square. As usual that was a big mistake as the two girls came back laden with bags of goodies. Then time to get home and now resting up as tonight we have a 50th birthday party to go to. A friend of a friend will also be there who also has Kidney cancer so it will be interesting to compare notes. He has had his cancer for about a year longer than me and is also on Sutent.. He has done really good but needed an  operation a short while ago to help keep things in check.

Hi Bob

Thanks for your response on my thread.

Have been keeping up with your posts but not been posting much.  On a bit of a rollercoaster (you all know what thats like)  Started chemo again on xmas day 3 weekly cycles 2weeks on 1 off.  I have been told they will be able to tell if its working by the end of the 3rd cycle so keeping everything crossed as I am running out of options. Most days I am positive but Thursdays are bad for me as I get my weekly blood test results.  Going for a ct and ultra sound scan as my gamma (liver test) is at 759 and should be between 1 and 40.  I will just have to take what comes and enjoy every minute of every day.  Problem is I am hardly able to eat so living on those lovely supliment drinks.

What an amazing guy you are and your family.  I feel exhausted just reading your posts.  Where do you get it from and can you give some to me.  Hope Kate gets enough snow so she can build a snow man.  To be honest weve had snow and ice since before xmas and I have had enough of it now.  I am getting out but with the ice its hard to get out.

I am glad your feeling better at the moment and as usual your still giving us all a laugh.  You are my inspiration and give me the strength i need to get through this awful roller coaster that we cant get off.

Glad you had a fab xmas and hope 2010 is a better year for us all.

Take care

Lots of love Lorraine xxxxx

p.s.  Fay it was good to hear from you as I was wondering where youd been.  Sorry your going through this but maybe with the help of the people here you might get some more options as I would hate to think your going to have to stop the treatment that reduces the cancer.  I am on the waiting game as well and its not nice  I am dreading being told there is nothing else they can do for me.  Take care Lorraine xxxxxx

Hi Bob,

I googled Affinitor and its the same as Everilmus, but ill still see what they say on Mon.

Hope your having a good weekend.

Hi Lorraine,thanks for your message its nice to know i was missed, i wil keep you posted as to how i go on. Look after yourselves love Fay XX