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.
best of luck with everything. As you know I am waiting to start my second round of sutent yet and it looks as though it wil be a further 2-3 weeks before i do so. Let me know how the scan goes and it seems that this round has not been too bad in terms of side effects for you. You are now well ahead of me on the "Sutent" track so my hopes really are with you somewhat, there are two posts running on here re this drug which i think we should update regularly of you are up for it. i think that this thing wil work for many more people than can get access to it so may be we can help push that in some way that i am not really sure of yet but I feel the need to do something if I can.
Best wishes for today, and get there anyway you want to!!
Good luck, Bob, hope all goes well for you. My mother is now back on Sutent, at a dose of 25 mg for three weeks instead of four, due to the extreme side effects she was experiencing. This is day five, and apart from being very tired, no major side effects yet, thank god. She is due to have a MRI scan on Thursday and CT scan 2/5/08. She needed to have a blood transfusion last week. Got good news today, she had been having shoulder and arm pain, which was worrying as she had secondaries in her neck bone in December which was treated with radiotherapy, she had x ray to check for spread but result said 'significant degenerative changes' which was a huge relief. Just hope MRI scan doesnt pick up anything more. She also has restless legs, dont think this is related to Sutent as she had this even when not on drug, anyone else experience this? Jan
Now I really know what it feels like to be on death row. Ive had the scan and now have to wait to see how im doing. Yesterday I drove from the M25 to the Marston hospital and after scan drove all the way home. today ive cut the grass and just tried generally to keep busy. Missed a phone call tonight which was a withheld number and might have been Professor Gore with my results.I will ring tomorrow to chase results. Thanks Andy and Jan for your messages.
Raise a glass for me tonight, both tumors have reduced in size. One has reduced by 2cm and the other has reduced by 1 cm
I will know more details on friday but things appear to be going in the right direction. I am sure that positive thinking has helped in all of this. It is so easy to spiral downwards whilst going through what we are going through, I have nearly done so several times. I then look at my family and the kids and that gives me all the fight I need. This is one fight I will never give up.
Hi Bob - what wonderful news. I have been reading this thread for the last week or so and was delighted to hear of your positive response to sutent. My Dad was diagnosed with Kidney cancer in October last year that had spread to his lungs. He had a kidney, two ribs and the lower part of one of his lungs removed only to have a follow up scan and find that it had spread to the back of his stomach and throat..... Sorry my terminology is so basic! He is in Aberdeen and his Oncologist has prescribed him sutent, however, he refuses to apply for funding so Dad has had to pay for his first lot of sutent. I am now working with the Pamela Northcott Fund to get funding as he cannot carry on paying around 4,000 pound per month indefinitely. He has just started his second course and has a scan booked for early May. Anyway, we are hoping for wonderful results like you have had and I would like to thank you for sharing your story and experience as it really does give hope to others. I live in Brisbane, Australia so I will raise a glass to you tonight - it's a bit early now for a drink! Louise x
I guess you would describe me as being a silent stalker on your post!!! I read it regularly with interest, and therefore I just wanted to say what fantastic news for you and your family. HURRAH and well done!
Bob that is fantastic news, you and your family must be delighted. My mother has mri scan tomorrow and ct scan 2/05/08, hope she receives similar good news. I agree wholeheartedly about the positive attitude making a difference, my friend who has lung cancer with numerous secondaries amazed her consultant today with her progress, and he said her determination had a lot to do with it. Jan
you already know how happy I am for you but IO wanted to add my voice on here as well. Your experience with the drug on its fisrt run through is just brilliant and lifts my hopes for my own situation as i satrt my second cycle next week.
I cannot put into words how happy I am for you and your family it must be just so great that you are walking 3ft above the ground!!
sorry but bit of a rant now after all the good stuff! I just read Downubders post and it makes my blood boil - how can a doctor recommend a drug and the not ask for funding for it - what the hell sort of response is that!!!!!!!
My doctors were great = they applied immediatley and got turned down and trhe re-applied and got the funding - this drug is very expensive and why people should be expected to pay for the NHS all their lives and then when they need it get told to sod off!!
Downunder - i am so sorry but please fight for it - when you read the threads on here of various people who are lucky enough (like me and Bob and others) to get Sutent and see the results that many achieve it must get you down to not have it available to you. Many people have said they have fought the appeals process and won so please keep trying or get another Oncologist who will!!
Ok rant over a bit - Bob soz to spoil the sho here if I have but you an d me both know how hard this is and we want all the weapons available to help our fight and the same for everyone else.
Hi Andrew, thanks for your reply (sorry Bob, I'm not hijacking your thread!),
Yes, it is totally outrageous isn't it? Thank goodness there are people out there - too many sadly - who have fought for drugs and who now help others who find themselves in similar situations.... From what I understand, we have an extremely good case in getting funding for sutent, based primarily on the fact that Dad's Oncologist prescribed it. He has formally refused to apply for funding so in the next day or two I will be sending an email to him outlining his responsibilites as far as applying for funding etc. If he still refuses then it's a case of finding an alternative Oncologist. My Dad (63) is a business man who has excelled in his line of work, but now with this dreadful disease I see a much different person who needs others to fight on his behalf, which of course we are very prepared to do. He has agreed for me to have access to all of his medical records etc. etc. so that all he has to worry about is getting/keeping himself well while I worry about the admin and fight with everyone (in the nicest possible way of course). I am horrified that someone this ill finds himself in such a terrible predicament. His Oncologist said to him "Discuss finances with me when you can't make the payments". so yes, our blood is boiling.....
