BOB JK My diary of kidney cancer (to be continued)
FormerMember
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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.
Sorry not been on here last day or two, so just read how you got on. Not good eh? You have every right to demand to see the onc not his registrar especially if you're not happy with the decisions they have given. Before your next appointment ring and tell them you will only see the onc himself/herself and have your questions written down before you go as sometimes anger and frustration can take over clear thoughts and we miss out on asking all the ?s we need to! Don't give up on this you can get your treatment sorted they have a right to do the best they can for you!
As to the cramp I get it too and my last two blood tests showed I have been getting clots oooer not good! but we'll say no more about that! At least my body is managing to disperse them without intervention!
Good on ya Bob with the new party trick I always make sure I have a tea towel around my neck when eating as I always seem to feed other parts! lol
Take care all I'm off to bed now, slept most of the day away so best try to get into a regular sleep pattern again!
Hi all and thanks for your replies and welcome Lisa
Lisa the side effects are a bit varied and do vary a bit from person to person but essentially once the pills really kick in the common ones are :-
tiredness
Diarrhoea
changes in skin colour, sometimes subtle sometimes more severe
puffyness and swelling to face and especially around the eyes
blotchy areas, almost like rashes to arms and legs
involuntry cramps
hand and foot syndrome (soreness and tenderness)
joint pain which can be literally at bone joints or site of previous operations
I think I have covered most of them and if I have missed any im sure someone will add to my list. As I say they do vary a bit from person to person and some seem to tolerate it better than others. I have been on Sutent since march 07 and apart from a three month break for my two partial nephrectomy operations have been on it continuously. You will find it will take a few weeks before it does really kick in but most of the side effects can be controlled by taking other medication. Somewhere on this site I did start a thread regarding sutent and its side effects. Im sure it is still on here but you will need to trawl through the pages. I wish your mom good luck and if you or her ever need a friend to let of steam to I am on here a fair bit and am happy to accept you as a friend and private message you.
I had a much better nights sleep last night and feel a lot better today. I did not wake until about six and then lay in bed for a bit before getting up. I am just having my first cuppa of the day before getting ready for work. Its good that it is Friday and I'm looking forward to the weekend.
Fay, keep battling my love, you are doing great. I hope things soon get a bit easier for you.
everyone else, really good to hear from you as always and I hope your day is a good one.
Bob, I really hope that you are coping today, and that morning cuppa went the right way, after your last post I got concerned you might be heading down the road of malnutrition!
Sore mouth and tongue most common side effect I think, I seem to have resolved it finally with saraken toothpaste and biotene mouthwash! I've tried so many things to resolve this, but this is the first month I've not had it with my sutent :-)
other websites also list many side effects of treatments and things that have helped over come them.
thats a big help thank you for that information Iwould love to keep in touch if thats ok its nice to hear from people how are coping with the same treatment ,
No worries and yes I forgot about the mouth and tongue soreness although to be fair I do not get that. It would be great to keep in touch
Not too bad a day today although again I did struggle to get through the day, There is a bit of a pattern emerging that I'm struggling to get through my day at work and that does worry me a bit. Even with the days off in between I still find it hard to get through the day. Kate has a friend round tonight and we will probably take them out for the day tomorrow, not sure where but possibly Duxford air museum. Then on Sunday we are off to Tommy and Katies for lunch which I am really looking forward to. Sutend side effects at the moment are mainly fatigue and cramp.
A real good nights sleep which was most welcome. our plan was to go out today but the weather is not very motivational. I have just managed some toast for breakfast and a mug of coffee which will probably, by the sounds I'm hearing, play havoc with my toilet training. I have popped a few pills to counteract the reactions and might have to chill a toilet roll for later lol.
No, it wasn't thanks Helen. We have had a really nice day. The weather as wel as "you know what" dried up long enough to go to Duxford and we had a great time. Although bitterly cold we made our way to the various hangers and even explored the test version of Concord. What a beast of a plane that was, I'm amazed the thing got of the ground at all, never mind fly. We arrived home in my case totally knackered but happy that we bothered to venture out when it would have been so easy to stay at home.As they say, "life is too short ".
A real good nights sleep again last night, although I did wake a little early. never mind I stayed in bed hoping Linda would offer to make the first cuppa but in the finish I was so dry and had to get up and make it. We had a bit of a lazy morning and I took my cocktail of pills hoping things would settle for our meal out with Tommy and Kate and in fact was not too bad at all. Katie cooked a great meal and then we spent the afternoon just chatting. I did have to put a government health warning on the loo once after I had used it but things were not as bad as they could have been. Now a quiet leisurely evening ahead of us relaxing before work tomorrow. I am also working Tuesday and Thursday before the Ritz on Friday. Tom was proudly showing us his new suit and he looked real smart and I will be the proud dad when we go on Friday.
