New member "on board"--thanks for being there

myboys2 said:

Surgery and scans
Scott I hope all was clear w chest scans. We have been lucky there so far. My son was up and out after a week. They said they had never had anyone on their table with such little body fat. The tumor had adhered itself to the wall cause there was no fat. They had to cut into the wall and yes as you guess muscle to get clear margins. It took about 2-3 weeks to get entirely erect but he fared really well. You are young and strong so my guess is you will be the same. And BTW I believe you will see those boys grow just like I will see mine grown and having babies of his own. You can manage this disease but yes it looms over you forever.

Gail mother of Cody 21
diagnosis 8/10/11 unclassified RCC
8/16 checked into NYU as emergency surgeon concerned head skull tumor was closing ventricle to brain
8/17 embolization via femoral artery to bone lesion on skull 7 hours
8/18 repeat
8/19 10.5 hour surgery to remove skull mass (about 45% right skull)
8/20 began a vegan(from an animal product standpoint) gluten free low glycemic diet; no casein but we do eat ocean caught fish and org chicken; org green drink every day
9/4 titanium skull inserted
9/29 begin sutent 25mg 2 weeks on one week off; then 37.5 2 weeks on 1 week off; then 50mg for 3 weeks then off 5 days (preop tests show 3 tiny liver lesions shrinking) Also Denosumub injection. No lymph,lung or brain involvement
11/16 full neph of lft kidney 5.5 tumor(not open) (started at 6cm but sutent was working!!) Still unclassified 
12/1 begin sutent again at 37.5 to work into it
12/8 sutent to 50mg for a week then off a week and continue cycle of 50 2 weeks on 1 week off until next scans (due in late Feb)
12/12 began radiation of remaining skull mets Monday and Thursday for 3 weeks high dose (already noted necrosis of tumor after one dose)

micatex said:

G'day Scott
G'day Scott,
Glad to see that you are more positive about what you are going through mate (as you can tell I'm an Aussie lol). My surgery was early February 2011. I had my right kidney completely removed due to cancer then and are feeling great. Don't be like me tho and try to do the same things as I was doing before the surgery. I now have a hernia that has come through due to trying to do to much before my body had time to heal. Be patient with not being able to be as independent like before. Healing takes time so let time do the healing (wish I heard these words earlier lol). We all here have been through or are going through similar things as yourself and will try and be here for you both before and after surgery. Keep in touch and keep positive like you are now.
Cheers,
Mica