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.
Hi Jan, Bob and ALL, Ive not been on this site for a couple of days as my computer was slow and started crashing all the time but its ok now as ive had a engineer friend of mine to fix it and now its full speed ahead. Ive not felt too good these last couple of days, the weakness in my legs and aches have come back so i dont know if its because i finished my Sutent on wednesday so im full to the brim with the side effects or the effect of the blood transfusion is waring off, ill soon find out as my best weeks are the second off Sutent and the first week on. It was nice to hear from you again Jan ill keep my fingers crossed things go well as possible for your Mum and Dad, it must be really difficult seeing them both poorly. When i got my scan report Bob the results were all my tumours ie kidney and lungs had shrank so i think Sutent works on them all, im sure the docs will do their best by you so fingers crossed you get good results from your next scan. My heart goes out to you Ange as its barbaric having to go through the process with the PCT, to think other people decide weather you live or die. I actually moved in with my partner and changed my doctor to get it as its not available in Manchester but 15mins up the road to Cheshire it is. I just wrote asking if i could have it as my consultant advised it and he also wrote to them, it was about a month when i got the reply. Infact i was at Christies signing up for trials because i thought i wasent going to get it when the doctor came in and said they had just had a fax to say i could have it, needless to say there were screams of delight from me,my sister and the doctor,( she was a lady doctor as men docs are usually a bit calmer).So best of luck Ange, ill keep my fingers crossed for you.xx I did read of a man from Wales who moved somewhere else to get it. Its T time now so ill sign off, stay well and strong, Fay.
Hi Shell, I have just read your postings and i dont know what to say except to try and be strong and possitive. Doctors are wonderful these days and new medicines are being developed all the time. I was given 12 months to live last March or 15 months with treatment from a doc at another hospital but when i got to Christies they gave me hope. Ive a few weeks to go to prove that other doctor was wrong and my determination will get me there. As you have left no profile i do not know what kind of cancer you have but im sure the doctors you have will do their best for you. Dont let it beat you," beat it" we have no choice we either sit back and let it take over or fight it all the way and im sure there are lots of people you know and on this site who are wishing you well, so keep your chin up and smile, stay strong and be possitive, Love and blessings Fay.
Im nearing the end of my cycle of Sutent and side effects have kicked in with a bit of a vengance. I have had a couple of poor days. I have had to literally drag myself anywhere and worst of all, Linda has had to drive the new motor as I have been too tired to contemplate it. I am still managing to do a couple of small jobs around the house and garden, but its definately not as easy as it was before. I expect I will have another week or so of this then things should improve alot.
I hope everyone is OK and looking foreward to the weekend.
hi all, just reading some older post here and getting a feel for how everyone is with side affects. i found ant had it worst week 2-4 on sutent and was good off the meds. but here we are on his 2 week break and he is suddenly tired. he looks so white,pale and transulcent even. i think looks more so with his white eyelashes and eyebrows. isnt it funny how all the sutent users find different weeks are bad and it seems no one at the same time. i was looking for thread for different meds u all take whilst on sutent, i know bob u put this on here some time ago, but i cant remember how long a go and i wanted to put ants in and compare. cheers ros x
hi, found it and added ants side affects and other meds, cheers and i hope this helps other users xxxxxx ros
If any other Sutent users would add a summary post of their medications and side effects I would be most grateful as it would allow other Sutent users to compare notes.
I have had a bit of a frustrating day today as my energy levels seem to have hit an all time low. I think this is the worst Sutent cycle I have encountered although generally it still does not stop me from doing odd jobs etc. Certainly each cycle I have seems worse than the previouse one but well worth it. I have one more week of cycle 4 then its back to London for another scan. Good luck Ant and Arniekj with your scans
A bit better day today. really tired but not so uncomfortable. I have spent a good part of the day sunning myself as we have the cruise in little over two weeks time and I dont want to get thrown in the water by thr crew thinking im a great white whale. As the weather was so glorious we had a bar-b-q and all the boys plus katie came over so it was really good. Tom did the cooking as my get up and go had got up and gone . We then went over to Lindas brothers house to look at two new additions to the family, we spent a couple of hours cooing and gurgling and even brooding until they started crying, then we came to our senses and handed the little ones back. Somehow when your life has been mapped out for you and you know you are not going to live to a ripe old age it makes it even more touching to see newborns. You hope there lives will be happy and long.
Ps did any of you watch "the royal" on itv tonight. my claim to fame is I used to drive the old bedford ambulance used in the series. I used to belong to the Royston branch of the St John Ambulance Brigade and we sold that vehicle to a farmer who obviously sold it on to the film makers. I remember many a duty driving that old banger and someone from the unit recognised the number plate, so there you are, who wants my autograph?
Gary has his appeal hearing on Wednesday. I've prepared the detailed presentation to read and Gary will do the personal bit. We've been told we have 10 minutes for our slot. I read mine bit as a practice run and it took 20 minutes - just let them try and stop us! We're going in all guns blazing - today we did an interview on radio Bristol - nowhere near as daunting as I might have thought, but it's mighty odd to hear your own voice on the radio. We've also been in contact with local tv. It is handy that this week is the 60th anniversary of the NHS and so the media is interested in the 'story so far'. Fingers crossed and best wishes to you all Ange
