BOB JK My diary of kidney cancer (to be continued)
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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 to hear you have had such a bad day. Do you have two or three weeks off between drug cycles? David started off with two weeks which was changed to three about six months ago. It has made a difference in that he has longer to recover before the next cycle starts again however, we have both noticed that the longer he takes Sutent, the less able he is to bounce back inbetween times. I guess his body is so saturated with the drug that it is never free of it. Fatigue is just something he is never without and although he has no active tumours at the moment, he regularly takes pain killers - maybe because of the surgery he had in the past or simply because Sutent creates pains in joints etc.
Anyway, I have grown to hate the drug for what it does to him. All the side effects that you have and more. He has been on it since April last year and it has really aged him physically, with his white eye lashes and grey hair which was always so black. The areas around his eyes are generally swollen and when not swollen, are baggy and tired looking. His spirit is undiminished however and that is a blessing.
He had the 'flu jab last year and this year (on doctor's advice) and I had it too as his "carer" so I am sure you will be able to have it too.
There, a good moan and I feel better already. Hope you will soon.
Hi Jenny and thanks for the reply, I was beginning to feel a bit lonely. I still have two weeks off between the drugs and as a rule, that has worked out ok. Im not sure a three week break will make much difference to me as my recovery periods are all over the place and not limited to the two weeks off.I agree with you about the longer you are on the drug the harder it is to bounce back. Like David my biggest problem is fatigue and I guess you have to learn to live with that. Im a terrible patient as my wife is always telling me in that I hate to be "laid up" and even when feeling dog tired will push myself to the limits. I must admit,(dont tell Linda), that I feel a lot better for the couple of days of rest and realise that I need have to have my rest periods occasionally. I too like David still regularly take painkillers for pain which I think is Sutent induced. I can also see where you are comming from when you say you hate the drug for what it has done to David physically. I dont like what its done to my looks (not that they were much to begin with) but I will be eternally gratefull for the extention to my life cycle. Sutent has allowed me to take some control over the rest of my life and really appreciate quality time with Linda, Kate and the rest of my family. My spirit, also like Davids in undiminished and long may that continue for the both of us.
The house was like clapham station all night. Firstly Kate couldn't sleep and wandered the house, then Matt, who is staying with us for a couple of days also couldn't sleep as he works shifts and his sleeping pattern was all over the place. He finally settled down only for kate to appear again and I ended up asleep with her upstairs to settle her down. So it was no suprise for us all to be rather tired this morning. Although my throat still felt like a layer of it had peeled off during the night and I was left with the raw surface, after a tablet and tea, it feels much better.Justin, who is also staying over has walked mollie and has fed the cats. Linda and Justin have just gone to work and Matt is taking Kate to school so again I dont need to venture out in the cold. I spent most of yesterday working on my own web site bobjk.com and today I will probably put some more pictures on it so feel free to take a look.
Just reading in the paper that NICE are expected to approve the Kidney cancer drugs and do a U- turn on its ban. Apparently the watchdog is reconsidering because of evidence from America which found that Sutent was more effective than first thought. We Kidney cancer patients here in the UK have already told NICE that their decision was wrong. I for one am living proof having long passed the 6 month timeframe. Good news we hope.
hi bob, catching up with your threads . sorry you have not been so well. i do hope nice follow through and allow sutent to be given on nhs. for us it proved affective for 13months. so that gotta prove something.. hope u all sleep better tonight, ros xx
Well it was a bit strange tonight, I went to sleep, as Linda popped out, with the memory of a dentist looking in a mouth and screaming and awoke when she returned to screaming and a childbirth situation. I wondered where the hell I was. The wonders of telly and a snooze. I still feel a bit ropey and wish I could get rid of the blasted cold for good. I think im beginning to get better then I seem to slip back a bit again. Never mind , the cold will go. hope you all had a good day.
Hi All, Sorry to hear your not too well Bob, if your cold is anything like mine you have my sympathy, this is the 5th week now and it dosent seem to be getting any better although having said that it seems to dry up the next thing im sneezing again, eyes watering, itchy nose and throat, it seems a lot of people have the sameso we just have to ride the wave, problem is with being on Sutant you dont know what to take thats compatable. You sounded a bit negative this week Bob thats not like you your the inspirational one, but i think we all have wobbley days its understandable, it really got to me when i heard about Andy and Caherty loss because were all in the same boat it brought reality home, and now im getting all emotional, ill change the subject. The tablets i take are 4 sutant once a day for 28 days then i have 14 days break, i have felt better this time round with having a extra week off Sutant and also my blood transfusions its just this bloody cold pulling me down. You can have Flu jabs while your on Sutant i go for mine next tuesday before the hospital. Ive had a really nice night tonight, my son came and hes staying the night so we got a take away relaxed and watched the tele which was good,Emerdale, Corrie and the Jungle, just dissapointed Simon was voted out, i cant believe people are voting for that David Van Day. Joe to WIN !!!!!! Well ill wish you all good night and god bless, Love Fay X
Hi folks,sorry to hear your all poorly with colds,on top of everything else,it can really bring you down.Hopeflly you,ll all pick up soon. I,ve been reading your posts on your side effects of Sutent,unfortunatly our health authority,here in Norwich won,t fund it for my dad,although some have been luckier! I guess theres pros n cons for everything,dad may be too poorly to cope with the side effects,but i wish he couldv,e been offered it at diagnosis wen he was fitter.I,m glad it will soon b available to everyone,is there any indication when that might be? Much love to you all,and hope you start to feel brighter Sheree xx
Hi Fay and sheree and thanks for you replies. Its good to here from you both. Fay, thanks for your comments on the flue jab, I will be getting mine done once over this latest bout. I have asked at my hospital and i am expecting the go-ahead beings so many of you on this site seem to have had it. This has certainly knocked me for six and if a jab will save this happening again that will be helpfull. Im sorry to sound negative, im certainly not and am as positive as ever. I have to be as I have far too much to loose. Tonight myself and Linda had a bit of a heart to heart and for the first time Linda sobbed her heart out on my shoulder and it really hit me how much she is fearing loosing me. I assured her im going nowhere soon. She is so worried about how she will cope when im gone and I assured her that I will always be looking down on her and kate as well as the boys. I am nearing the end of my second week of eigth cycle of Sutent and apart from this cold and the ever present fatigue feel not bad at all. I seem a lot more tired of late but hopefully that is down to meds or cold. As Linda said the longer I am on Sutent the more of a build up of the drug so this could cause the extra tiredness as the drug is known to cause severe fatigue. My throat is beginning to feel a bit more normal now and apart from one tender spot which really hurts first thing in the morning, it is definately getting better.
Sheree like you I hope they make a positive decision about the Sutent and the other Kidney drugs, according to the report ive read, a meeting is planned for January but more than that I do not know. Good Luck to your dad and please stay in touch.
Hi Bob, I have just been to the Kidney cancer uk conference and a spokesperson there said that the appraisal meeting of N.I.C.E. concerning Sutent, will take place on 14th JANUARY 2009, and the final guidance should be issued in March/April 2009. Hope this is useful. Julie H.
