advice/similar experiences welcomed-kidney,brain,lung

Dad back home - stopped sutent but will hopefully start again in 2 weeks at lower dose

2011-09-29T22:10:39Z

29.9.11 - dad back at home. Was told to stop taking sutent (2 days ago) because platelet count low and potassium low. They would like him to have a 2 week break and then will hopefully start back on sutent - prob at the lower dose 37mg (instead of 50mg). His blood pressure and temperature stablised 2 days ago (but they haven't managed to pinpoint the source of the infection).

Because of lack of dexterity in his arm/hand, he visited occupational therapists in hospital yesterday and they asked him to show them how he performs everyday tasks such as making cup of tea, getting in and out of bed etc. They have given him a "handle" accessory which a knife can be pushed into to give a better grip of knife so that he can hopefully start using his right hand again. They have also explained about visualisation techniques whereby he has to look at hand and give the instruction to his hand at the same time. Hopefully he can re-train and get to keep his hand moving. He's talking about an electrically rising chair and I've tried to encourage grab rails in various places. But, for now, I'm so pleased he's looked for help himself with occupational therapists to try and help with little tasks and stop him struggling. Absolutely no reason not to have anything that might be useful, but I guess must be hard admitting that you need the odd aid here and there - but great he's done it himself!

Feeling positive and happy that he's looking into helping himself.

26.9.11 p.m. - stopping sutent cos low platelet count & low potassium

2011-09-26T21:15:11Z

Doc told dad that stopping sutent because platelet count low (has been dropping apparently over last few blood tests) and potassium low. Will give potassium supplement and may consider putting back on sutent at lower mg than before. Temp still up at 38.

Dad walking around & out of ward with his visitors when they leave him so that he gets some fresh air - so that seems more positive. Terrible diarrhoea though! Occupational therapists seen him and said "oh, you're fine getting around on your own aren't you". I suggested to dad he should get some aids to help on days when he is feeling weak, but he said "Oh, I've been fine up till now". So I feel I've pushed as far as I can (even though seems silly to me not to have anything that could help with him effectively doing things one-handed. I guess it's ultimately his decision what he's going to accept and what not but would have preferred him to see what he could get.

Just thought I'd post this update so I've got for my records.

Dad's infection-still can't pinpoint -"mapping" heart to see if from pacemaker/wire

2011-09-26T12:48:13Z

Dad still in hospital having fallen at home due to weakness arising from infection. Doc can't pinpoint where infection coming from (chest xray clear, urine clear, blood tests not pinpointing). Temperature still going up and down. So now going to "map" heart to see if infection coming from pacemaker/wire (which he' had 10 years). Still on sutent (first cycle 50mg for his kidney cancer with additional tumours on lungs & one on brain). Going to be assessed by occupational therapists to see what little aids he can have around home to help him with everyday tasks now that trying to do everything one handed (because of loss of dexterity in his right arm). Will not be discharged till discover what causing infection and until temperature can be regulated). Still feels weak (although has done some walking around ward). On intravenous antibiotics (causing diarrhoea!). Finds nights long and doesn't sleep because of ward noise/activity of monitors etc).

So it's wait wait wait. Any similar experiences / advice welcomed!!

BTW, thanks sarsfield for your comments (i'm rubbish at finding my way around this new site so not sure how to reply to say thanks when someone does comment!). And, also, thanks juicy lucy re advice.

Thanks and kind regards to all. x

sutent -day 16 - Dad collapsed through weakness/infection

2011-09-23T22:29:32Z

Day 16 of dad's first cycle of sutent. Last night dad in A&E because had to call ambulance after collapsed on lounge floor. Couldn't get himself out of his armchair and then fell. (Apparently been in bed for two days, hardly eating and extremely weak for last two days). Managed to crawl on floor to perch himself on sofa. Docs took blood, urine & chest xray. Advised him had infection/high fever and started him on antibiotics intravenously (plus cancer specialist subsequently asked for another type of antibiotic to be given in addition). He was admitted to normal ward to be monitored.

Visited dad on ward twice today. Still high fever and shaking/shivering. Doc advised will keep him in hospital to Monday. Cancer specialist said infection probably caused by sutent but doesn't want to just assume that so still awaiting test results. Dad told not to take sutent today but will prob start again tomorrow.

Friend recommended occupational therapist. Nurse will refer him so that they can assess what needed from safety/mobility point of view whether can help give suggestions for doing everyday tasks to make things easier for him & mum at home. Mum opposed to any mention of "props" (e.g. bed handle, toilet surround handles, cane, electric rising chair, handrail for front doorstep) for him cos I think she sees them as an "end" solution/much later down the line - but to me seems sensible to keep him safe etc.

Wondering whether to ask specialist whether he will scan dad again (he can't have MRI because of pacemaker) to see if any changes since diagnosis or what plans are.

Does anyone have any similar experiences/suggestions? Many thanks and kind regards to all.

12.11.11 today's thoughts re what next

2011-09-12T11:48:01Z

Writing this down for my own sanity, hoping that if I see things in black and white, I might order my thoughts and know how to progress! Not sure if I should contact my dad's cancer specialist direct to ask the questions that i would like answered (and feel remain unanswered after dad's visit to him). It's all such a waiting game and I feel frustrated just to be an onlooker and not be able to help in any way. Also, don't feel as though I should take over but feel I need as much information as possible. Don't want to do things behind his back but yet don't want to express why I feel so worried and I feel I need to push for ideas cos just want to make him better.

Dad now on his second week of his first cycle of Sutent. Tells me that stomach feels a little upset but generally not too bad (or he's not admitting to anything else!).

My questions for doc as follows (but if anyone has any others they would be welcomed!):-

-Doc recommended sutent but didn't wait for results of biopsy (which is what he was told he needed before any medication given) but that took about 6 weeks - so why the delay and why has he been started on sutent without biopsy results? What more will biopsy tell us (since they've said it's grade 4).

Why can't he have cryosurgery, radiofrequency ablation, gene therapy or radiotherapy? Are they waiting for results of sutent?

When will first scan happen to see if reduction in tumours?

As he's losing dexterity in arm/hand, why won't physio help? Presumably because of brain tumour but would physio do anything - even to keep circulation? Would like doctor to know that rapid deterioration this week in his mobility/dexterity/balance/face muscles. Surely doc should re-assess? (not due to go back to doc for another 5 weeks).

Mainly writing this as diary to keep track of thoughts and ideas/questions.

Kind and positive thoughts to all who are reading.

new to site.family member with kidney,brain,lung tumours

2011-09-09T22:35:58Z

New to site & looking for as much info/similar experiences/suggestions. Family member diagnosed 6 weeks ago with grade 4 kidney cancer. He is 70, has high blood pressure (controlled by medication), a pacemaker to regulate his atrial fibrilation. Had one cancerous kidney removed 15 years ago (without complications or need of any other treatment/medication) and subsequently had yearly checks for a period of 10 years where no further sign of cancer appeared.

However, at Easter of this year he had a mild stroke (only effectiving dexterity in one hand) and at subsequent check ups following the stroke found to have cancer where his kidney was, cancer on the remaining kidney, two tumours on his lungs and one on his brain.

End of August, had biopsy from the kidney area. Has been told that he will not be given chemo or radiotherapy because they aren't any good for treating kidney cancer. 4 days ago he started SUTENT/SUNITINIB.

Specialist has now said he might look into giving him radiotherapy on brain.

Deterioration noticed over last week. Losing mobility (especially in one arm/hand). Has balance issues and one side of face seems to be changing/dropping).

Anything welcomed from this supportive site. Read lots of comments & seems to be a real caring community.

Thanks