BOB JK My diary of kidney cancer (to be continued)
FormerMember
4509 replies
3 subscribers
1611806 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.
Well everyone who reads my diary will know how I like my food so yesterday was a bit of a dissapointment. We decided to go for lunch with David and Sue, Lindas brother and sister in law. We went to our local golf club as the food is normally exellent and its not too far to travel. My appertite was OK and i eagerly looked at the menu and along with the others made my choice. Our starters came and were of the usual high standered you would expect from such an establishment although they did seem to have a bit of a problem with the brown bread to go with the prawn coctail. Then it was time fgor the main course,I went for roast beef. Well where do I start, I tried to put my fork in a potato and it was having none of it, I tried to cut my potatoe and it was still having none of it. As the sun came glaring through the conservatory where we were sitting I thought the heat would soften the potatoes thus making it easier to cut them, no such luck, the longer it went on the more rubbery they got. As for Lindas rissotto she orded, It looked second hand
Kate and Tom came over and on friday evening we decided to start painting Kates bedroom. We took just over two hours to get the first coat on the walls and then yesterday we got the top coat on. It looks really good and without Tommy and Kates help I would have taken ages to achieve it. Last nigh tkate stayed out at her friend georgia's house. They camped in the garden and it was the first time for ages she has slept out. She has tried a few times but always ended up comming home as she was worried about me. Poor Kate I so do not want her to miss out on her childhood because of my illness and so last night was a very important step. Today myself and Linda are off to pick Kate up and then we are going to pick up more paint for Kates bathroom. Day one on week four on fifth cycle of Sutent and I have had to increase tablets to cope with side effect of Sutent but I feel good and keen to continue as normal life as possible.
Yesterday continued to be a good day, we went out and bought paint for Kates bathroom and yesterday I managed to get the first coat done, A real personal achievement. Myself and Linda also painted the pine furniture white which again looks really good. Kate came mback from her sleep over all smiles which waqs really good. I am know getting ready for my four hour stint at work. Still feeling pretty good and I must say rather pleased with myself. I hope eveyone else is OK.
Hi Bob - you sound a very brave man xx My husband has been diagnosed with kidney cancer, mets to his spine and lung, only 6 weeks ago, and over that time we've been told its incurable and then by Dr Nicholson at Leicester Royal Infirmary that he has only months to live, which has been an immense this to even try and begin to understand. All we can think about is why us?? He's on his third weekly treatment of Temsirolimus and we are due to go back in three weeks to see Dr Nicholson to discuss the results of the treatment, do you know about this drug? I shouldn't ramble when you are going through this as well, just could do with someone to talk to. Take care, will be thinking about you xx
Thanks for your comments Maxine , I know exactly how you and your husband are feeling. When I was first diagnosed all the indications were that I would be lucky to survive 6 months, especially when we found out I had primarys on both kidneys. After my surgery I was lucky to be given Sutent and now I have a chance of a prolonged future. I know I will never reach old age as my cancer is also uncurable but I fully intend to keep going for as long as possible and to make the most of every day. I hope and pray the drug your husband is on has the same effect to allow you to make the most of the time you have left. I understand from a friend that Temsirolimus has simularities with Sutent , Good luck
Another good day today, especially after myself and Linda worked quite late into the evening painting furniture and walls. Ive been back to work again for four hours and included a site visit within that time. On the way back home I called into mums before sleeping for a while on the sofa. I hope to do a bit more painting tonight but probably not go quite as mad as yesterday.
Well the painting did not happen last night. I was just too knackered and although I had good intentions to paint tonight, I must say its not looking very likely. Again Ive been to work today and put in another four hours which at the moment is all I can manage. I have been to see a couple of work clients and have a job to price on one of my half days next week. Once I got home I cut the front grass which seems to have done me in, so listen to my body I must and rest is the order of the evening. Tomorrow we are of to London to see the high school musical at theatre. We are taking one of Kates friends and it should be a good day. My colour is, at last returning to a normal colour after looking a rather sickly orange for a few days.
Well the planned trip to London went very well yesterday. We setn off around 10.00 and wqas in London by 12.oclock. We found a car park straight away and I was very suprised how reasonable it was to park in the capital, cheaper than Cambridge, Although thye car park was getting a bit full there were plenty of "blue badge"spaces(at least some advantages). Once parked Myself and Linda, sorry Sally, Linda and I took the girls for a bite to eat before making our way to the theatre. "Did you enjoy it"? I hear you ask. Well Linda and the4 girls certainly did, I didnt mind it but I must confess I fell asleep several times during it. I thought I had got away with it untill at the end when I said to Kate "did you enjoy it". She replied "yes, did you enjoy your sleep". whoops, I had been rumbled. We drove home and then ordered a Chineese take away to finish off the day. Kate and her friend got to sleep some time after eleven. I awoke early this morning and after taking Linda her early morning cuppa I took the dog for a long walk. The girls are now awake and Linda has gone off to get her hair done. I am contemplating the rest of the day. I would like to finish decorating Kates bathroom and also do a bit of weeding in the garden. Ive just taken my coctail of tablets and as I near the end of my fifth cycle I feel still pretty good. Yeswterday my tummy was a bit jippy and I think today will probably be the same but apart from that , absolutely fine. Its a lovely sunny day and you know when people say when they wake up to a sunny day "it makes you feel good to be alive" well I really appreciate every day but a sunny day is just the icing on the cake.
We spent yesterday at a wedding and reception and it was a really good day. We started off by going to the church for the weddfing of my friend and his missus which we found very emotional and then it was off to a hotel for lunch and the evening reception. Totally knackered today.
Maxine, I'm so sorry to hear of your husband's diagnosis, and even more, of his (current/initial) prognosis. May I ask why his doctor thinks he has such a brief time left? They really are not always right, though I understand that they don't want to give too optimistic an answer. How extensive are the lung mets, and those in the spine. What is it about them that makes the doctor think they are so bad as to be that dire? Has he had the primary tumour out, or is that still there, along with the affected kidney, and is it too difficult to operate, or him too frail?
I am very glad to hear he is on Torisel (Temsorilimus) as this is one of the powerful new drugs (that Nice don't want us to have!). There are very definitely good results to be had from this drug, and patients can see reduction in their mets.
Yes, mRCC is incurable (at the moment!), but that does not mean it is untreatable (although Nice, again, would seem to prefer not to bother....) and it is exactly what Bob says, a question of holding on and holding out, and keeping going as long as we can. With these new drugs the jury is most definitely still out, and there are people still alive on them from the original trials (though you won't find Nice admitting that!). Obviously, everyone is different, and so much depends not just on the drug therapy - though you can be very pleased you are on one of the new ones - but on the individual patient, what their conditon is, other medical ailments etc etc.
If you husband has not yet had his primary tumour removed, it might be that Torisel will sufficiently improve his overal health, and shrink the primary as well as the mets, and so bring his primary tumour into operaable range. I have definitely heard of this aim of the Torisel treatment.
I would urge you to join the KCUK (Kidney Cancer UK) forum, as there is a wealth of experience and information there, as everyone on it has kidney cancer. I suspect most people here are also there as well, even if not active participants. There are also some excellent American RCC support sites with forums, and again, even more knowledge to share around.
You've entered a terrifying new world, and I can remember when it happened to us, earlier this year. But, little by little, you get your brain around all the complications, and hopefully start to see a way forward, little by little. It very definitely has to be good news that your husband is able to be on Torisel.
I have important information for those of you who think you have signed an on-line petition in opposition to the latest NICE announcement that we all heard about on the News last week.
I shall copy it here so that you can see for yourselves. Rachel is my son's fiance.
-----
Original Message ----
Email address removed by Macmillan moderator Sent: Friday, 15 August, 2008 3:58:18 PM Subject: RE: Kidney cancer drug petition
"Hi Kate
Thank for your email but I'm hoping you can confirm something for me. I responded to the initial email to get on the petition and forwarded the request on to a large number of friends and family who I believe have responded in their numbers which is excellent.
However, I have looked at the link below and I just don't understand it! It's a science step too far and is unlikely to illicit a response from others that I encouraged to email. Does the fact that we have all emailed you mean that we are on the petition or do we have to do something else using this link?
If you could let me know then I will spread the word to all those I contacted so you don't get more numpty questions like mine!!
Many thanks
Rachel"
"Hi Rachel,
There has been mix up re. the petition - there is no petition - I think a patient has misconstrued an email i sent - no matter as they are not effective enough and we don't have enough time. However, the best thing you can all do is respond to the link - I know it is a scientific conundrum - however you can comment as you see fit. People could be very concise and state "we want to register our dissatisfaction to your appraisal findings..." It does not have to be complex.
To help you all here are some key points that could be raised:
1. The UK's drug guidance body, NICE, announced its preliminary decision on whether the NHS should use four new cancer drugs - bevacizumab, sorafenib, sunitinib and temsirolimus - to treat people with kidney cancer that has spread ('metastatic renal cell carcinoma').
Despite clinical evidence that these drugs can actually help, NICE has decided that they're too expensive. In essence, NICE doesn't think that these four drugs are value-for-money for the NHS.
2. The gold-standard method of testing whether a treatment works and is safe is the clinical trial - a careful look at how a new treatment compares against the treatments currently in use.
The more people enrolled on a clinical trial, and the longer it lasts, the more sure researchers can be about its results.
But only about a couple of thousand people every year are diagnosed with metastatic renal cell cancer*. And only one in ten people diagnosed with this stage of the disease is alive five years later.
So, for relatively rare diseases like this, it can take a long time to run trials large enough to gather watertight evidence about how well new treatments work.
3. Currently, the only available treatment for metastatic renal cell cancer is immunotherapy. This halts the disease's progress for just four months on average. But if people are unsuitable for immunotherapy, or it doesn't work, that's it. There's no other treatment option.
So doctors urgently need new treatments for this disease. And the four drugs NICE has rejected have shown considerable promise in clinical trials.
These four drugs are part of a new generation of cancer drugs, developed after years of painstaking research. They target key processes within the body that get hijacked when cancer develops.
Trials looking at whether these drugs can help people with metastatic renal cell cancer to live longer have had extremely encouraging results. NICE's assessment contains details of several such trials.
4. In fact, several of the trials were stopped early, to allow those people not receiving the new treatment to have it. Other trials showed that some of these drugs could stop the cancer from growing for several months more than immunotherapy alone. That doesn't seem much, but when you're trying to beat cancer, those extra months can mean a lot.
5. NICE agreed that patients tended to live longer when they were given these drugs. But they felt that the evidence wasn't sufficiently robust. And when they put the data from the trials into their computer models, they found that the drugs cost a lot (£20,000 - £35,000 per patient per year) compared to the benefit they brought patients - too much for them to recommend that the NHS prescribes these drugs.
Rachel, I need as many people as possible to contribute to the appraisal - they need to know enough is enough and I really don't think they'll read them all anyway - shocking but true - the numbers are far more important than content. So sorry for the mix up but we can still do much to change this.
