Our journey Living with kidney cancer

2 minute read time.

FormerMember

31 Mar 2011

My brother was diagnosed with rcc last april,2010 after invesigations into heamaturia and heavy feeling legs! No other symptoms were present.

During investigations into bladder infection! (i wish) and a CT scan it was discvered he had a 10cm tumor on his right kidney with vena cava involvement, he was fast tracked to the christie and to withington hospital with a wiew to urgent surgery (Nephrectomy) However this was deemed not safe at present so the docs did a pocedure called Embolisation to stop the blood supply to his kidney in hope that the nasty thing would shrink, i was with my brother throughout this operation in theatre, he was amazing, so so brave i talked his ted stockings loose and all went well, things seemed gradually better, less blood in water, weight gained, for a few weeks.

The frank heamaturia returned with large blood clots so we went to hospital and he was admitted, the operation was repeated as the docs could see vessels missed first time, so off we went again.

This was so bitter sweet for me, as i am a nurse and was absoloutly amazed and priveliged to see such a procedure done, however this was my sweetheart brother whom i adore and have an amazing relationship with, i had to trust the medical team to do what i couldnt.

I dont think i stopped crying for days and days, but i was as strong as an ox when with my R. Result it worked and things got a bit better for several weeks he gained strenghth and weight, he was started on Sutent, this gave him 4 months of stabillity, then scan showed progression in lymph nodes, the sutent was withdrawn and we were offered Temsirolimus trial at the Christie in Manchester, of course we have nothing to lose so took this chance both for R and for all of us for the future.

He has faced this with such grit and bravery, the trial has been tough and have recently had a 2 weeks break due to awful side effects, his 1st scan since starting the trial is on tuesday11th Jan, i am terrified for him, i am routing for stability at least, for shrinkage at best, thats the only way we can possibly have nepherctomy with a lesser risk, R is very fatigued and aching at the moment and blood clots and bleeding are back, i am exhausted looking for a pathway to help and ease his trauma and pain.

To be continued.... Love and hope to all XXX Pati

FormerMember over 14 years ago

Hello,

and the result is......overall stable!!!!!! R had another dose of trial temsirolimus, does need a scan on bladder to check an observation made at scan which is inconclusive, BUT for now the treatment continues and so does the fight! YES i feel like i won the lottery....but eat the ticket!!!!!!!!! Love Pati
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FormerMember over 14 years ago

Hi,

Tuesday already!! off we go again to The Christie for another dose of Rs trial drug, this week has been agoniising to see R so poorley with side effects, so today is bitter sweet ie greatfull for the drugs that may help, but in contrast worried sick about the effects! Still must remain as positive as possible to get through this. see you soon X Pati X
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FormerMember over 14 years ago

Hi,

The Christie went well, it seems all pain, fatigue and exhaustion etc are side effects, R had xray on chest, was clear, reduced dose drugs went in, since tuesday R has been v tired, but better than last week, as for me, i now realise that being a carer is harder in many ways than a patient.

As a carer you are expected to be a total warrior, no hurt, no crying, just a robust rock that can deal with anything, YET all the time you are hurting, infact soul destroyed, stressed, and so very frustrated, but still must hide behind a painted smile.

Today i took R to Cheadle for a while to get out, iv not been out since 3rd january at all, with the exception of The Christie for Rs treatment. Roll on spring time, so i can get in my garden and be a little distracted. bfn Pati
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FormerMember over 14 years ago

Hi,

What a week, so many terrible side effects poor R, he cant sleep properly, no taste at all, no appetite, cold most of the time, extreme fatigue, pain, breathless the list goes on, i only hope this drug is helping him, my mind is in turmoil, i need to scream but i cant, carers dont do that, who the hell am i, i think im lost my id gone, but the fight will go on, hes to precious for giving in, just wish grumpy wasnt on the list, suddenly i cant do right for doing wrong!! well of to The Christie again!!!!!! here goes nothing X Pati
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FormerMember over 14 years ago

Well the last week has been so cruel to watch my R suffer such horrible side effects, i fear his quality of life and mobility are deminishing fast, off to the hospital today, but before i allow any drugs, i am going to insist blood work is run, i am suspicious re the fatigue and breathlesness, im thinking possible aenimea? we will see, this is so heart wrenching, i hope things improve so he is able to eat and enjoy more than sat down or be out of breath!
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