BOB JK My diary of kidney cancer (to be continued)
FormerMember
4509 replies
3 subscribers
1611796 views
Hi, My name is Bob and I live in Cambridgeshire. I am married with an 8 yr old daughter and three older step sons. Up untill the end of last year everything was tickety boo having recently moved to a new house which we love. Work was busy but enjoyable. I am Manager of an electrical companys maintenance department and my Wife, Linda was enjoying her job as a Nurse. The three boys are buying there own house nearby and all work locally. In November I went to my Doctors with a small "cyst" on my chest. After a couple of referals and many Xrays, pet scans, bone scans and CT scans I was told the news everybody dreads. My lump on the chest was a secondary cancer of which the primary was in my left Kidney. I was fast tracked to the Royal Brompton, under the expert care of Mr Laddas who informed a long and complicated operation would need to be carried out to remove the bone tumor and surrounding bone which involved two ribs,my collar bone and chest bone. I did not have time to panic, the operation was carried out the next day over 10 hrs. After nearly two weeks in the Brompton I am recovering well from this op but I have since been told that the Cancer is in both kidneys as well as small mets in both lungs. It seems at the moment further ops are out the question and i have been put on the drug Sutent. I am one week into this and so far so good. I do not know what the future holds but I have to remain positive.
hi bob just to let you know that i am out of hospital came home yesterday i was execting to be in longer than 5days i am in alot of pain hope your ok love michelle x
HiBob,My daughter found this site for me and I have read your diary from the start and it has made a difference to me as I have also got kidney cancer , which was removed before last christmas.Unfortunately my left kidney sent 2 tumours to my right collar bone and top rib.After three attempts my local PCT finally agreed for me to have Sutent .I am now just a few days into my second 4 week session and I thought if I could share with everyone the symptoms I had last month, then like me reading about these things somehow you might not feel that you are the only person dealing with this.I am also taking pills for the pain as the 2 tumours ,although shrunken by radiotherapy are wrapped around my nerves and that is why Sutent was the best option. I think my worst symptom was the absolute tiredness,I could sleep for England!My skin gradually went from yellow to orange but as I was on holiday at the time I just looked like I'd misread the instructions whilst applying my fake tan.My mouth made it practically impossible to eat I mean my tongue, my gums and my cheeks,funny I seem to manage to eat chocolate though.I felt nauseous mostly at bedtime and even during sleep felt like it and was.I coped better if I sat up first and tried not to eat too late at night-even the chocolate.I had disturbed vision which happened mostly at night so I just went to bed.I promise I wont go into details but I suffered from diarrhorea and constipation and that is sorted out now.I had a couple of red rashes on face I ignored them and they went. On a cheerful note I am remaining positive ,can't really believe I've got it and want a good outcome.Thanks for letting me have my say.
Hi Bob I feel a bit presumptious writing to you, because Gary is only on his 1st week of Sutent, but I thought I'd relay whjat the oncologist told him last friday when he got his first prescription. She said that he would have scans to determine any changes, as you have had, but that they were only part of the picture. His clinical symptoms, and by that I guess she included how he felt, were also important. She emphasised that the results of the scan would not give the total picture, so to speak. So, if you feel better and the scan doesn't show that, then maybe you could take heart from how you think you are. Sorry, it's a bit jumbled, but I suppose there are no simple straight lines in any of this. Best of wishes Ange
Firstly I really hope that you are all on a good day! My Mum too is suffering with kidney cancer with secondary tumors in her lungs, bladder and bones. She too has been given Sutent and so far (apart from the evil side effects) she has had some good results. Her tumors have shrunk by a fair bit and as long as she can stay on them all looks good! She has had a really rough time on the tablets and ended up in hospital with her blood pressure going through the roof! She's on a bit of a concoction of tablets now for her blood pressure and had to stop taking the sutent for a week in the middle of her course. However she has managed to get her blood pressure and platelets sorted to a level that is ok to start again and has just started back on them again. I don't know if this will help anyone but I saw on one site that organic toothpaste and mouthwash might help. I got her both from The green people website and my Mum says it helps, especially on the days when her mouth is really sore. On days when her mouth is too sore she just uses the mouthwash. There is one with aloe vrea in it so maybe that's why it helps? I don't know. She's also having to watch what she eats on these days but mash and poached egg seems to be the fave for these days.
My Mum was also let down as she was told that she was supposed to be booked for an operation before Christmas but then wasn't booked in when she got there! Very annoying but she's had the kidney removed now....just a shame they can't get rid of the whole thing, the cancer i mean but we're keeping our fingers crossed. She has just booked herslelf and My step dad on a cruise to the Caribbean so she's looking forward to that. Me and Mum also have a token for a lovely pamper day but are waiting for a time when she's not on the tablets so that we can do the whole day when she's not too bad.
Anyway, positive thoughts and sending hugs to all!
I am so glad my diary has made a difference to you, hopefully for the better. If you look on my other thread http://share.macmillan.org.uk/Share/Forums/default.aspx?topic=1005349 You can read other people symptons and side effects and also add you own. I like yourself can sleep for England I also have the often hilarious colour changes and yes I dont need your toiletry details I have plenty odf my own, no doubt as nasty as yours. Thanks for reading my thread, good luck and please keep in touch.
Thanks for sharing your Mums experience with us and again please add symptons to http://share.macmillan.org.uk/Share/Forums/default.aspx?topic=1005349 so we can all share experiences. its good her tumors have shrunk a bit and hopefully know she will remain stable. The tablets do make you feel rough but heh, a small price to pay for the chance of a longer life. I am also on tablets for blood pressure. I have also heard that the toothpaste and mouthwash is good but as I have not needed it I cannot vouch for it. My own Oncologist told me to stay away from alovera so please check before using. certain things interfere with the workings of Sutent. I hope your Mum has a brilliant time on the cruise and although my day was full of ups and downs yesterday tonight I have had better news.
All the best and once again, good luck to your mum
Well Mr Gore my Oncologist rang tonight and it was news worth waiting for. After consulting with his team it seems like an operation is now on the cards. it would seem that one of my kidney tumors has began to die off so they want to operate on the other one whist it is stable. after my two week break off the Sutent they want me to take Sutent for a further four weeks and then rescan. If things still look good then an operation would follow in the next two to four weeks. I am not sure at this stage if they will remove the hole kidney or just the tumor. I pre4sume treatment would then continue on the other Kidney.
Ive generally had a much better day today although my stomach could do with settling down a bit more. Ive managed to complete a few outstanding jobs which I needed to finish. My appertite is poor but will return in the next week or so.
Hi Everone, Weve had a very sad day today after short illnes we had to put our dog to sleep, she became really poorly over the last couple of days so we knew reluctantly we had to phone the vet, she had a very peaceful end at home with us and i cant praise the vet who came enough she was so compassionate. I had to go to the hospital today for my usual 6 weekly checkup and i really did'nt feel like it, so my daughter explained when we got there the siuation and could we be rushed through so thankfully i was and all was fine including my blood. I have felt ok this last couple of days except for worrying about Tasher, i start my tablets again tomorrow (Sutent) so im usually ok for the first week. Bob i used to have that sickly feeling at night id wake up coughing and feeling sick, so the doc gave me some antisickness tablets and they work. I take one as soon as i wake up and it does the trick but i also watch what i eat in the evening as its rich food that causes the problem with me. That sound possitive news from the hospital i hope it all works out for you and your not in too much discomfort, my kidney is dead from a treatment i had to kill it but because of blood clots i cant have a operation. Im wishing you well now Bob just incase i dont get chance tomorrow as were going on our trip to Scotland on Thursday ( Ive bought loads of stuff from the chemist for the midges, they seem to like me ) and we will be away for about 4-5 weeks oh and have a nice time on your hols. Glad to hear your ok Shell and your op went Ok, stay possitive and like they say keep taking the tablets.xx Keep strong and possitive everyone, and to all who aregoing on their hols have a great time. ill speak to you all soon ,loveand blessings Fay
