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

Bill Baker

garym said:

New perspective...
Scott,

Your suspicion is correct, your perspective on what is and is not important in life is going to continue to change because of this life changing event. You will remain on the emotional roller coaster for quite awhile, eventually things will settle down and return to "normal", but I guarantee the everyday things that used to rock your world will no longer be focal points. One of the few good things about cancer is that it teaches you how fragile life really is and you learn to appreciate things that are truly important like family and fulfillment. It may not seem like it yet, but you have been given the opportunity to enjoy life for what it is without the worries for what it is not.

Good luck this Sunday and beyond,

Gary

Scott, I hope your chest
Scott, I hope your chest x-ray from yesterday came out well.

myboys2

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)

Sm4pack

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)

Clear chest scan
Hi everyone-

I got word that my chest scan was clear. I really needed to hear that. Thanks for the prayers, they were answered. Now, on to surgery on the 9th. But, off to Lambeau to watch the Pack at Lambeau on New Years Day with my son Aiden. This will be a Packer game I won't forget.

Scott

Sm4pack

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)

Go Cody
Gail
Cody's story and timeline is amazing. What a special young man. Your family have been through so much. The treatment looks like it is working, I'll continue to pray for you.

Scott

MikeK703

Sm4pack said:

Clear chest scan
Hi everyone-

I got word that my chest scan was clear. I really needed to hear that. Thanks for the prayers, they were answered. Now, on to surgery on the 9th. But, off to Lambeau to watch the Pack at Lambeau on New Years Day with my son Aiden. This will be a Packer game I won't forget.

Scott

Great news
Scott,
That's excellent news. Next is the surgery itself, which will go fine and you will be a full-fledged, dues paying member here.
Regards,
Mike

Bill Baker

Sm4pack said:

Clear chest scan
Hi everyone-

I got word that my chest scan was clear. I really needed to hear that. Thanks for the prayers, they were answered. Now, on to surgery on the 9th. But, off to Lambeau to watch the Pack at Lambeau on New Years Day with my son Aiden. This will be a Packer game I won't forget.

Scott

Great news Scott! I will
Great news Scott! I will thinking of you and your family on the 9th. Happy New Year's-here is to some healing.

Bill

cww71964

Sm4pack said:

Clear chest scan
Hi everyone-

I got word that my chest scan was clear. I really needed to hear that. Thanks for the prayers, they were answered. Now, on to surgery on the 9th. But, off to Lambeau to watch the Pack at Lambeau on New Years Day with my son Aiden. This will be a Packer game I won't forget.

Scott

good news scott
scott,
so happy to hear your chest xray was clear. I know what a relief that is. Have a great time at the game and have a great new years. Looking forward to hear from you after the 9th.

micatex

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

braswelm

Sm4pack said:

Clear chest scan
Hi everyone-

I got word that my chest scan was clear. I really needed to hear that. Thanks for the prayers, they were answered. Now, on to surgery on the 9th. But, off to Lambeau to watch the Pack at Lambeau on New Years Day with my son Aiden. This will be a Packer game I won't forget.

Scott

Great to hear
Glad you got good news!
Get any heavy lifting done before surgery. And take it easy, walk, and take your pain meds when needed. The first few days may be kind of rough, but it gets better very soon. I went back to work last week, 5 weeks after surgery.
I'll think about you for a little while on the 9th, ;-)
I live in Alabama, and have been a lifelong Crimson Tide fan, so I might be a little busy that night!
Keep us posted as you progress.

Roll Tide!
Mike

Sm4pack

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

Nice to meet you Mica
Thanks for the advice Mica. I appreciate it. This is such a great resource for all of us. I am reminded of the story of the tortoise and the hare. I am going to take the slow and steady approach to recovery.

Jamie1.3cm

Sm4pack said:

Nice to meet you Mica
Thanks for the advice Mica. I appreciate it. This is such a great resource for all of us. I am reminded of the story of the tortoise and the hare. I am going to take the slow and steady approach to recovery.

setting the example
Hey, good news on the chest scan! I'm glad you talked honestly with the kids. Age-appropriate honesty is the best way to go. You also set the tone for how they will handle challenges later on in life, health-related and otherwise: positive outlook, due diligence. You're a good example for your kids.

garym

Jamie1.3cm said:

setting the example
Hey, good news on the chest scan! I'm glad you talked honestly with the kids. Age-appropriate honesty is the best way to go. You also set the tone for how they will handle challenges later on in life, health-related and otherwise: positive outlook, due diligence. You're a good example for your kids.

Good news...
Scott,

Congrats on the news now all you have to concentrate on is getting that little leach removed. I have to ask, did you get your surgery scheduled for the Packs bye week on purpose? Just kidding, but you should be feeling good enough to watch them start their run albeit on TV for the first game at least. My Lions came up a bit short against the Pack's seconds, but the zebras didn't help us much either, at least nobody got "stomped" this time around. Hope we get another shot, but the Saints just might be the team to beat this year. If the Lions can't I hope the packers do. You have a positive attitude going for you and that will help a great deal during recovery so keep it up.

Good luck and God speed,

Gary

Bill Baker

Monday the 9th
Good luck on Monday Scott; will be thinking of you.

Texas_wedge

Bill Baker said:

Monday the 9th
Good luck on Monday Scott; will be thinking of you.

Good luck tomorrow Scott
Consider : smallish tumour, you're only 40, you've had a clear chest scan, you've broken the news, so no stress worrying about that, and you've got the support of your family and everyone here wishing you well. You've got everything to live for, the docs say your prognosis is very good and many people are born with only one kidney and live normal lives.

If you heed the great advice given by the likes of foxhd, in a few months you'll be back to normal but, actually, better insofar as you'll probably have an even deeper appreciation of all you have both now and for the future.

tom_in_VT

Sm4pack said:

Clear chest scan
Hi everyone-

I got word that my chest scan was clear. I really needed to hear that. Thanks for the prayers, they were answered. Now, on to surgery on the 9th. But, off to Lambeau to watch the Pack at Lambeau on New Years Day with my son Aiden. This will be a Packer game I won't forget.

Scott

chest scans clear
that's wonderful news Scott, collect all the small victories you can, when you can! Open surgery on right side 12/20... out shopping w/ the Misses yesterday for 2.5 to 3 hrs. I was whooped when it was over but happy I got out. 1st follow-up appt w/ the surgeon on Wed morning, I am looking for a small victory to gather for myself. Best of luck with your surgery tomorrow and YES - use the pain meds given, you will be sore. I say sore is better than the alternative, remember to smile, we are lucky people in that medicine has progressed to where it presently is.

NanaLou

Texas_wedge said:

Good luck tomorrow Scott
Consider : smallish tumour, you're only 40, you've had a clear chest scan, you've broken the news, so no stress worrying about that, and you've got the support of your family and everyone here wishing you well. You've got everything to live for, the docs say your prognosis is very good and many people are born with only one kidney and live normal lives.

If you heed the great advice given by the likes of foxhd, in a few months you'll be back to normal but, actually, better insofar as you'll probably have an even deeper appreciation of all you have both now and for the future.

Best of luck
Best of luck tomorrow. I will also send up some prayers for ya. I just turned 40 this past week, so we are the same age going tru this. I had mine taken out on November 18th. I am back at work now. Mine was an open surgery. It was pretty rough, but I made it thru and so will you. Take it easy and keep us posted.

NanaLou

myboys2

Sm4pack said:

Go Cody
Gail
Cody's story and timeline is amazing. What a special young man. Your family have been through so much. The treatment looks like it is working, I'll continue to pray for you.

Scott

Thanks and pray
Thanks so much Scott. He is really a tough kid and keeps himself very intellectual about this. Much smarter then his mom. We are having all our rescans done on Tuesday. I pray we are stable and are having continued remission in the 3 small liver mets. If that's the case we are really close to getting NED. I need him to stay with me in this horrible game for this decade as my research scientist sis studying this exact disease in Switzerland believes his cure will come in this decade. So I need him to stay a long term survivor. We may try IL2 in May not sure. Our doc thinks that that PD1 will be orphan approved this year which is far less SE's then IL2 so we will see. Stay strong you will do great!!

Gail

garym

NanaLou said:

Best of luck
Best of luck tomorrow. I will also send up some prayers for ya. I just turned 40 this past week, so we are the same age going tru this. I had mine taken out on November 18th. I am back at work now. Mine was an open surgery. It was pretty rough, but I made it thru and so will you. Take it easy and keep us posted.

NanaLou

Best of luck...
Scott,

Thoughts and prayers headed your way today, you'll be your old self before you know it.

Good luck and Godspeed,

Gary

Bill Baker

garym said:

Best of luck...
Scott,

Thoughts and prayers headed your way today, you'll be your old self before you know it.

Good luck and Godspeed,

Gary

Thinking of you Scott (and
Thinking of you Scott (and your family)!

Bill