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

Hi Jennie and thanks for your reply. Thanks for taking the time to read my diary and thanks also for your input,if you get a chance would you list drugs and side effects on my other thread to compare side effects.
http://share.macmillan.org.uk/Share/Forums/?topic=1005349
Bob Jk

Ive had a really good day today although ive almost cer4tainly overdone it. We took Kate and her friend Georgia to London as a treat. We drove down leaving our house at 0715 this morning and arrived in London by 09.30. After a quick bit of breakky we headed down to the London eye which was very good. As we had prebooked our ticket we only waited around 10 minutes and the view was great. We then wandered over the bridge to marvel at big ben. After this we went to lunch and then to the London aquarium which was also brilliant and we spent a good 2 hrs marveling at all the fish, and the like. Once we got home at about seven oclock I went to a friends house for a bar-b-q. We were all going but Linda and the girls were knackered so i went alone. It was good to have a laugh and a chat about old times and now I am back at home. Considering all ive done I dont feel too bad and hope I dont suffer too much tomorrow. Tomorrow is my final day of 4th cycle of Sutent. We go for scan on Monday and I am hopeful that all will be OK.

Well, another crappy night but I feel OK today. We awoke to the sound of kates friend being sick after an over indulgance of chocolate due to a midnight feast. It was short lived and she was soon OK again. Today ive done my normal routine of feeding cats and dog plus take forementioned dog for walkies. I think its fair to say the dog took me for walkies today. Ive just popped into Cambridge to pick up some printer cartdridges and when I came to pay I nearly added heart failure to my list of problems. Today we have all the boys and Lindas parents over for lunch as it is nannys birthday. Today I took my last Sutent of this fourth cycle. I will need to see doctor this week as I cannot sleep at night due to this sicky feeling I get at night time. Weather it is the drugs or something like an ulcer which plays up I dont know but I need to get to the bottom of it.

Well ive been for my scan and all is OK. We went to see the consultant and initially he told us that the tumors had shrunk again, which was brilliant, much more than we expected, almost to good to be true. It was to good to be true, when we got home, Linda to her horror discovered the report he had given us was a duplicate of the last scan. I rang him and he informed me he had picked up the wrong report from the system. Still the main thing is that they are not getting bigger again. He is to have a meeting with his team tomorow and will ring me tomorrow night with a plan of action. They might decide to operate or wait untill next cycle of Sutent is complete. I have felt absolutely terrible today but hopefully will soon pick up. For now I am just looking foreward to our holiday in nearly two weeks time.

Hi Bob
It amazes me that oncologists can be so insensitive to the fact that we hang on to every word they say. To make such an error with your meeting as was made today seems to me to be unforgivable but, of course, we are not in a position to complain as we are at their mercy.
David had similar treatment from our regular oncologist who always mentions life time expectancy etc and asks David if he would like to leave the room whereas when he was unavailable because of ill health, we saw a different chap who said "So, what are your side effects? Have you tried so and so for relief?" which was what we wanted to hear rather than tales of doom and gloom.
Anyway, you mentioned that you feel sick during the night and this second oncologist recomended Ranitidine tablets which David gets free from the GP and takes twice a day. They have certainly helped in a big way although the same cannot be said for the volume of his burps which he exudes any time and any place. He also takes Cocodomile for post operative pain twice a day and one of the things he is taking gives him constipation from time to time - which is intermittent with the diahhrea which he gets from his Sunitinib. (I'm sure my spelling is getting worse as I go on). He uses Udder Cream for his hands which, nevertheless, do give him problems with pain and peeling but then we don't know how had they would be without the cream. He is rubbing Scholl foot cream into his feet which also give him trouble. So, all in all, he has quite a lot of rituals to go through morning and night. Hope some of that helps.
Best wishes
Jennie

Bob, couldn't believe you got wrong results, must have been so disappointing, but at least tumours still stable, I am always relieved when my mother receives this news. We attended a Consultant Neurologist today at the oncologists request to discuss her tumour at top of spine (2 cm x 3 cm). This is not causing problems at the moment but if it grows could have very significant consequences. They are unsure what to do as surgery sounds pretty major, being opened at front and back of neck, vertebrate with tumour removed and replaced with bone from hip. They have decided to do urgent MRI and CT scans to compare with those of April and make a decision then. My mother is reluctant to undergo surgery as my fathers sister went for bypass surgery a couple of weeks ago and died Wed after being in a coma since the operation. This was devastating to the family, we have had much ill health and death in the family recently, having had many trouble free years previously. On a more positive note, the Consultant felt that my mother was fit for the surgery and he was pleased with her general health.
Jennie my mother also had to have her time off Sutent changed from two weeks to three and is coping much better with this. Best wishes Jan

Hi Jan
I just wanted to let you know that David didn't have to have his "time off" Sutent changed but had the time extended from two to three weeks because he was doing well and the oncologist thought that it was a reasonable risk to take with him.
On re-reading your post, I see that your mother is considering spinal surgery. David had exactly that a year ago last February. He was in surgery for eleven hours and, apart from having his kidney removed, had a vertabra removed (where secondarys had settled) and had his vetabra re-built with bone from a rib and from his pelvis and has since had a six or seven inch titanium cage around his spine, reinforcing it. It was huge surgery but worth it - he is now back on the golf course! So, if your mother can then she would be well advised to go for it.
Jennie

Hi Jan
I just wanted to let you know that David didn't have to have his "time off" Sutent changed but had the time extended from two to three weeks because he was doing well and the oncologist thought that it was a reasonable risk to take with him.
On re-reading your post, I see that your mother is considering spinal surgery. David had exactly that a year ago last February. He was in surgery for eleven hours and, apart from having his kidney removed, had a vertabra removed (where secondarys had settled) and had his vetabra re-built with bone from a rib and from his pelvis and has since had a six or seven inch titanium cage around his spine, reinforcing it. It was huge surgery but worth it - he is now back on the golf course! So, if your mother can then she would be well advised to go for it.
Jennie

Had a much better night last night and have accepted that my tumors are stablem and have not shrunk, your right Jennie and Jan, It was hugely dissapointing. when we went to the hospital I never expected shrinkage, but being positive i expected stability. So when we were told they had shrunk we were gobsmacked and both burst into tears as soon as we left the room. It was like a short lived miracle, that perhaps I could totaly beat this bloody awfull desease. Im angry the mistake happened and after building such a lot of trust and faith at the royal Marsdon, this has now been dented. Its no good having a go, what good will it do. " life is just too short". Proffessor Gore is ringing me tonight to say if surgery is an option as he is still pleased with the initial shrinkage (as am I). I spent yesterday feeling rather deflated but that was down to human error. It should never have happened but there you go.

Jenny and Jan. If you havent done so already, would you list drugs and side effects of Sutent on my link http://share.macmillan.org.uk/Share/Forums/default.aspx?topic=1005349

It allows Sutent users to compare side effects

Many thanks Bob Jk