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Help - treatment advice/meds/success stories, we need hope.

Emilymill
Posts: 1
Joined: Jun 2012

My father (52) was diagnosed with RCC around Oct last year.
They found a small met 2cm in his lung and he had both the kidney (7cm tumor) and lung met removed in one surgery.
He recovered well. The oncologist said to wait before starting treatment as the most successful chemotherapy is Sutent and in some patients it only works for a number of years, so best to wait until you really need it.
Around March they found a small met in one lymph node and then he starter having back pain. They foun two bulging discs and a met on the vertebrae. The met cracked the vertebrae but luckily didn't spread to the surrounding tissue and cells.
Oncologist decided now it's time for the Sutent and radiation.
He had 5 doses of radiation over 5 days and then started the Sutent, 50mg per day for 4 weeks and then 2 weeks off.

All was ok until week 3 of the Sutent and he started getting very bad side effects, bad reflux, sore throat, tongue, nausea etc. He was so sick he ended up back in hospital as a result of the drug. They took him off it for two weeks and lowered the dose to 37.5mg.
He's in his third week and symptoms are significantly less and he his coping much better.
However, his back is in agony. He's almost in tears daily, he feels it's barely any better than before the radiation.

I'm beside myself in fear. I cry everyday. I try to keep it together to be as supportive as possible but I constantly fear the worse...
Should his back be better after the 5 sessions of radiation? Its been 5 weeks - should he still be in so much pain?
I'm so worried maybe Its not working? But he does have a cracked vertebrae as a result and he does have two bulgin discs...
How Long does it normally take for the pain to subside?

Is there anything he can take to help? He's on pain meds etc...
Can someone offer some advice or some hope???

He's my best friend and I'm only 26. I'm petrified.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Emily, as you may have already discovered, this site is a very valuable resource, particularly for moral support and for comparing notes among people with similar conditions.

However, we are essentially a bunch of patients, able to relate our own experiences and to pass on the professional advice we get from our teams of medical carers but (and apologies to anyone here who is a pro, like foxhd, a physio) we don't have medical qualifications or professional involvement in this field.

Your Father's situation is one which calls for a lot more solid information than we are likely to be able to offer you. So, stay with us here for all the support and help we are able to give but please ALSO go to KIDNEY-ONC where you'll find a considerable number of people with professional involvement and some 'amateurs' who've been studying this disease intensively for many, many years and know more than a lot of the professionals.

To really get the best possible additional help for your Father, that's where I would be putting the questions you've asked us. KIDNEY-ONC is free, easy to join but you'll need to fiddle about a lot and experiment to find the most convenient way to access what you want (a problem we have here, too, but the technical interface here is much friendlier).

nyc_girl
Posts: 26
Joined: Apr 2012

I'm sorry I can't offer any advice. But I am sending you my thoughts, wishes and prayers for your father's full recovery. Your father is lucky to have such a loving and caring daughter. Stay strong and continue to be an advocate for your father. Get a second medical opinion if something doesn't sound right.

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