BOB JK My diary of kidney cancer (to be continued)

FormerMember over 16 years ago

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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.

FormerMember over 16 years ago

Hi Both,

not thought of sleeping pills just yet as can sleep but not just when I want to - also not sure whether or not its the sutent causing these issues as the radiotherapy and all the morphine must be having some contributory effect as well.

I did have some tiredness just from the sutent I think on its first cycle, nothing great just generally tired towards the end of the day but as I was sleeping ok then it made little difference to me in my life.

Now I am knackered all the time but as I say I cannot be sure it is the sutent that Is doing it to me. The trouble I have now is pain and sometimes I cannot stand up for more than 10 minutes without having to give in to it. I am hoping that the radiotherapy I have undertaken will ease this with the shrinking of the lymph nodes in my back, if not then the morphine will have to be increased which will then mean more tiredness until I get used to the dosage.

Vicious circle I think its called but something that has to be lived with.

So not much more I can say at the moment on that - just hoping I can reduce the pain killers shortly.

Cheers anyway and if things change I will of course let you know.

Andrew

FormerMember over 16 years ago

Hi Andy,
Sorry to hear you are in pain, i havent got to that stage yet, just really achey legs, oh and i forgot to mention yesterday with the achey legs comes breathing difficulties. The doctor at Christies said to reduce the side effects id have to have a lower dosage of Sutant but i dont want to do that, i want to give this disease the strongest dose i can, its like you say we have to live with it, were in the hands of the doctors, which at Christies in Manchester are brilliant. Keep fighting the fight. Regards Fay.

FormerMember over 16 years ago

Hi Fay,

I hope you never get tp the pain stuff either. This isn't really from the sutent its just where my cancer decided to go. The lymph nodes in my back got swollen with the cancer and then that pressed on the nerves at the base of my spine - hence the radiotherapy to reduce the swelling and get rid of a bit of cancer on one of my vertibrea. So please don't worry about th epain stuff, mainly my docs have beenm able to manage this for me very successfully.

Tursday is the day for my return to sutent (Ihope) and like you I am determined to get back on full dose and get back to the fight at hand. We have Bob as our beacon here on his thread and its just great that he is doing this, it lifts my spirits every time he has a victory and galvanises my determination and will to follow suit. I am sure he does the same for you.

BTW - Hi Bob (seeing as its your thread we are using here , thanks.

So lets keep it real and make sure we use what we get to fight the proper battles, we can help each other through crappy bits.

Thanks to Bob (for allowing me to steal half his thread) and Fay too for keeping us up tp date with her progress and for doing the "do" (my atempt ah Hip Hop - lol).

Cheers,

Andrew

FormerMember over 16 years ago

Hello Fay, glad to hear you are tolerating the Sutent so well. Can I ask what dose you are on, my mother is on 25 mg, and is due to be scanned on 2 May to check her progress, hopefully she will have positive results as in addition to the low dose she is only taking it for 21 rather than 28 days due to her poor tolerance. This site is great as apart from those who post on the site we do not know anyone who has taken Sutent and who can give feedback. Jan

FormerMember over 16 years ago

Hi Caherty,

Nice to hear from you, I am on 50mg of Sutant which is the highest dose i think, i appear to be tolerating it quite well compared to some people, like ive said the worse thing is the weakness in my legs when walking which then seems to make me breathless.Im finding my best times are the second week off the tablets and the first week on them so its a matter of making the most of that time.
Im quite a possitive person and im trying really hard to stay that way although i do have a few wobbly days as i call them (ie tearful and why me ) but the way i see things are we have what we have and theres not a lot we can do about it but be strong and make the most of every day, its like my GP said to me no-one knows whats around the corner. . I have a lot of faith in my Docs and future medicines.I try to get out as much as i can even if its only my partner takeing me for a drive.. Weve got the motorhome to see as much of this country as we can, this weekend were supose to be going off to tour Scotland for about a month BUT there is a threat of a petrol strike in Scotland, (sods law eh )Its a cheap way of holidaying and i can always lay down in the motorhome as Jon is driving.Anyway ill let you know how we get on.
I hope your Mum has a good result when she gets her scan results as it will definatly lift her spirits give her my best wishes. Ill be in touch soon, Fay.

FormerMember over 16 years ago

Hi Andy,
Sorry about the pain you are in, ive had a bad back for years so i know how back pain can pull you down but you sound as though with the morphine you are coping quite well, funny thing is since i was diagnosed with cancer ive not had back ache?and it used to go to the pain clinic for steroid injections so it was bad.I had morphine when i developed a Heamatoma after id had interlukin and it sure did the trick, infact it made me feel quite good as in happy, i used to look forward to the injections i had and i also had a top syrup

Not quite as energenic as smiley though.
Keep in touch its nice to compare how we are all coping and its nice to make new friends, thats the one good thing about this disease we have good backup and sites like this.
Take care Fay.

FormerMember over 16 years ago

Hi all, Well i had a BRILLIANT day yesterday having spent most of it in the garden. I managed to cut the lawn and trim all the edges. I also have this plant growing up the side of the garage which needed training onto wires which I also did. Finally I managed to pot a couple of plants, do some general tidying up, and watering. Hows that eh ?

Like sweetiepie (fay) above I definitely find my best weeks are last week off and first week on and you just have to make the most of it. there is no other way. I also have the severe breathlessness and find just one flighty of stairs a struggle at times. By the way good to hear from you Fay, Jan and Andy.

Myself and Linda are now busy (especially Linda) Planning any breaks we can incorporating these two Weeks's I think I said in a previous post we have booked Poland and we are looking at a cruise from Southampton,

I hope you all have your good days and make the most of the good weather promised for this weekend.

FormerMember over 16 years ago

Hi Bob,

busy boy yesterday, hope it wasn't too much for your poor old bod - lol. Great to have good days, my pain today is soo much better than yesterday so I will join you in the "feel good" garden if thats ok.

Get thjose hols booked and sorted, I am looking to try and get my days in the sun sorted this week or early next week. Probably wait until find out the sutent cycle on thursday and then get on the comp and get something booked! It, by itself, will be a tonic I think, just getting something actually sorted and in place - feels like a victory or sorts.

Fay, isn't that strange? - you loose the back stuff and I get it ! - Just goes to show how weird this disease can be and how it effects people differently. Thanks your lucky stars - lol and I sincerely hope you continue in this manner.

Jan, I think I was on 50mg as well - will let you know later when I start again. the wobbly stuff happened to me as well and you can see from Bobn that it does to him too but how well he manages it. Bob is right you have to adjust your life around the cycles and find out which way works for you best. It is worth the trouble though to get the best out of this drug. I still gfeel so grateful and lucky to be able to get the sutent in the first place as so many people ar denied it.

Just one last thing from me (using all your space up again Bob),

Jan and Fay,

I am assuming you both ahve contact with the Macmillan nurses and your local hospice, they have helped me enourmously through this thing so far and have been another place to turn to for information and emotional support. They are just fantastic and my local hospice also offers loads of other things I can use, they do alternative therapies, massage, accupuncture, dietitions, physiotherpy and best for me at the moment) referal to Pain Consultants (I use this once per week to moinitor my drugs).

Cheers to Bob, Fay, jan and anyone else reading.

Andrew

FormerMember over 16 years ago

I can back up Andy regarding the Macmillan nurses. Myself and Linda have found our nurse very helpful and this morning we received loads of useful information regarding benefits. We have also been speaking to a lady at the hospice regarding help in talking to Kate and that was useful also.

Today I'm taking mum out for a gander round a garden centre and possibly lunch having just watered plants.
Also Jan I'm on 50mg (max dose) and although some days like yourselves I feel rough I am determined to stick with it for the best possible outcome

I hope you all have a good day.

FormerMember over 16 years ago

Hi Again to all.
Everyone is sounding on top form today, which is good to hear. Im still fine although i did go to the local shops today, my first time in ages as Jon usually goes for me and id only walked about 100yds and i was shattered, my legs were killing me and as usual my breathing was bad, but once i got home i make a quick recovery which is good.Im envyious of you Bob having a gander round the garden centre.
I bought a walking frome last week from Lydl supermarket it was only £50 and its really good, it has breaks and a seat, but me being me im gonna feel a bit embarassed using it, but it will help me get around more when we go away.
Thats all for now love to you all and keep up the good fight, and like they say keep taking the tablets.
Regards Fay.

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