Newbie Intro
Hi All..! I figured that since I was already posting here.. I would introduce myself and share a few things about me and my RCC tale..
First, I am a male, 59, well.. in a few days I will get to turn 60.. Born in Detroit, Mi and been living in Cal since 1975. Not much of a medical history of sorts until now... Like some / many..? of you I had no early symptoms of RCC. In late Dec 2011 I had what was thought to be Kindey stones... The symptoms came and went several times... Two Doctors first said stones, here are some pain pills call back if they do not pass... So, as I felt great for a few weeks, I thought all was well.. then it started up again... this time I had a hunch all was not well... got to see a great Urologist, he examined me closely, and stated NO CANCER, Kidney stones.... BUT, he sent me for a scan to see what he was dealing with.. Three days later he gave me the bad news... however he was able to get me up to Stanford.. very lucky for me..!! The Doctor, then Doctors knew what to do, my tumor was very large and the scan showed Renal vein intrusion, but no other signs of an issue. Oh yes, my Creatinine level was high at 1.7. A few weeks later was surgery time.. what was interesting and a real value I am sure was a pre-op, op.. they went in and tied the blood vessels off to my left Kidney the day before.. This was to make the actual surgery go better. Fast forward, after the surgery I was told a lot of info.. but they did not take any Lymph Nodes which was a good sign..my tumor was described like others here as a small football..!! The routine was to get a CTScan and MRI every 90 days, plus blood work. The first 90 tests were good. The second 90 day tests were OK, then the next tests showed spots in both lungs, too small to treat.. and a few days ago the spots have grown and now it is time to start treatment.
OK, a little history, my Mom died of what I think was RCC 30 years ago (almost to the day) yet several doctors say not related... I do have my doubts..!
I hope the Votrient works... start that real soon... Hope it works, and then I hope I can somehow afford the co-pay...
Best wishes to everyone...!
Ron
Comments
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Risk factors
Ron, we have a long-running gag here that your history makes it irresistible not to pursue. You seem to have some high-risk factors - from Michigan and being a biker. You don't, I suppose happen to also play golf or be an engineer?! If your G happened to stand for Gar(r)y, that would top it off!
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Oh No..!Texas_wedge said:Risk factors
Ron, we have a long-running gag here that your history makes it irresistible not to pursue. You seem to have some high-risk factors - from Michigan and being a biker. You don't, I suppose happen to also play golf or be an engineer?! If your G happened to stand for Gar(r)y, that would top it off!
Oh my...! No, actually in the Classic Bike world I am known as Gold Star Ron.. And I am not an engineer but yes, I am in the Automotive Industry... I do not have the patience for golf..!! Give me two wheels.... on the street or on the race track.. Just hope I have many more miles left in me..!!
Thanks..!!
Ron
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Oh well...GSRon said:Oh No..!
Oh my...! No, actually in the Classic Bike world I am known as Gold Star Ron.. And I am not an engineer but yes, I am in the Automotive Industry... I do not have the patience for golf..!! Give me two wheels.... on the street or on the race track.. Just hope I have many more miles left in me..!!
Thanks..!!
Ron
We can't all be perfect...LOL
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Good Luck Ron
Good luck Ron and welcome to the club. I hope you do great with Votrient and are telling us all a success story soon.
Karen
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Thank you all for the kindKJones1969 said:Good Luck Ron
Good luck Ron and welcome to the club. I hope you do great with Votrient and are telling us all a success story soon.
Karen
Thank you all for the kind words... I have already learned a LOT from all of your postings..!! There is so much to learn.. sigh..
And Fox, yes that bike is indeed a Goldie.. a Gold Star Manx racer... it got raced twice on the IOM (two DNF's) and if I can make it, I will again campaign the bike over the pond..! OK, here is another one of my bikes... look more familiar..? Cheers..!! Ron
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Thank you all for the kindKJones1969 said:Good Luck Ron
Good luck Ron and welcome to the club. I hope you do great with Votrient and are telling us all a success story soon.
Karen
Thank you all for the kind words... I have already learned a LOT from all of your postings..!! There is so much to learn.. sigh..
And Fox, yes that bike is indeed a Goldie.. a Gold Star Manx racer... it got raced twice on the IOM (two DNF's) and if I can make it, I will again campaign the bike over the pond..! OK, here is another one of my bikes... look more familiar..? Cheers..!! Ron
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Sorry for the doubleGSRon said:Thank you all for the kind
Thank you all for the kind words... I have already learned a LOT from all of your postings..!! There is so much to learn.. sigh..
And Fox, yes that bike is indeed a Goldie.. a Gold Star Manx racer... it got raced twice on the IOM (two DNF's) and if I can make it, I will again campaign the bike over the pond..! OK, here is another one of my bikes... look more familiar..? Cheers..!! Ron
Sorry for the double post...
OK, there are a couple of things about the forum layout that bugs me... First I think there should be an option for people to put in where they live... as some of you know some good referals in your areas... Next is the fact that each post is in the oldest first... i think it should show the newest post first... or am I missing a set up option..??
Thanks
Ron - in California
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Thread format etcGSRon said:Sorry for the double
Sorry for the double post...
OK, there are a couple of things about the forum layout that bugs me... First I think there should be an option for people to put in where they live... as some of you know some good referals in your areas... Next is the fact that each post is in the oldest first... i think it should show the newest post first... or am I missing a set up option..??
Thanks
Ron - in California
Ron, there's nothing to stop anyone from saying where they're from or where they live now, as you've already demonstrated. To make it permananetly accessible info you just need to put it on your profile page - I'd suggest in the 'How and when did you learn about your cancer?' section would be handiest.
I would hate a push-down listing of messages - I think the present ordering is fine the way it is.
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In case you've been scrolling down...GSRon said:Sorry for the double
Sorry for the double post...
OK, there are a couple of things about the forum layout that bugs me... First I think there should be an option for people to put in where they live... as some of you know some good referals in your areas... Next is the fact that each post is in the oldest first... i think it should show the newest post first... or am I missing a set up option..??
Thanks
Ron - in California
When you are on the main thread listing page, under replies it tells you how many are new in blue, if you click on that it takes you right to the new replies, no scrolling.
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What a very useful tip Gary!garym said:In case you've been scrolling down...
When you are on the main thread listing page, under replies it tells you how many are new in blue, if you click on that it takes you right to the new replies, no scrolling.
What a very useful tip Gary! I hadn't discovered that. Did you find this out just by experimentation? Is it a new feature of the upgrade? (There are a few new aspects that many users won't have discovered yet.)
It's especially valuable when someone has posted a new message somewhere in the middle of a long thread. The way it works when there are many messages that you haven't yet read, is to put you in at the new messages nearest to the top. Then, I suppose, you'll need to scroll down for the others. I'm guessing it will also be handy when there are several pages in one thread - it should take one directly to the correct page?
I hope that in due course CSN may provide a list of such tips - otherwise maybe we'll need to do it for ourselves on each forum.
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Not new...Texas_wedge said:What a very useful tip Gary!
What a very useful tip Gary! I hadn't discovered that. Did you find this out just by experimentation? Is it a new feature of the upgrade? (There are a few new aspects that many users won't have discovered yet.)
It's especially valuable when someone has posted a new message somewhere in the middle of a long thread. The way it works when there are many messages that you haven't yet read, is to put you in at the new messages nearest to the top. Then, I suppose, you'll need to scroll down for the others. I'm guessing it will also be handy when there are several pages in one thread - it should take one directly to the correct page?
I hope that in due course CSN may provide a list of such tips - otherwise maybe we'll need to do it for ourselves on each forum.
Its been that way as long as I've been here, I just clicked on it one day and BINGO! It takes you to the middle of a thread if that is where the latest reply is and you do have to scroll from there to find other new replies, but since the upgrade the new replies are flagged in red which makes them easier to find. (Kudos to CSN for that)
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Something blue, something newgarym said:Not new...
Its been that way as long as I've been here, I just clicked on it one day and BINGO! It takes you to the middle of a thread if that is where the latest reply is and you do have to scroll from there to find other new replies, but since the upgrade the new replies are flagged in red which makes them easier to find. (Kudos to CSN for that)
Thanks Gary.
By the way, the new posts were being flagged in yellow after the upgrade and I suggested to Greta that that was too illegible and asked if they could be marked red instead and CSN obliged - yet more evidence of their enthusiasm for making the forums as user-friendly as possible. However, they ae still being dogged by the scumball scammers - I've already had occasion to flag a new one earlier today.
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I've been looking for "replies"Texas_wedge said:Something blue, something new
Thanks Gary.
By the way, the new posts were being flagged in yellow after the upgrade and I suggested to Greta that that was too illegible and asked if they could be marked red instead and CSN obliged - yet more evidence of their enthusiasm for making the forums as user-friendly as possible. However, they ae still being dogged by the scumball scammers - I've already had occasion to flag a new one earlier today.
I am still a 'puter moron. Been looking for "replies". ??????????
Next I want to learn how to post a picture. I waste my life trying to learn these things........There we go! I've just figured it out!! If you want to live a long time after kidney cancer, GET OFF THE COMPUTER!!!!!!!!!!!!!!!!!
You could be spending time robbing banks, playing golf, riding your motorcycle, or exercising. This damn pile of diodes, chips and resistorsis is killing me faster than cancer ever will. (With that said, )"Have a nice day."
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Garyfoxhd said:I've been looking for "replies"
I am still a 'puter moron. Been looking for "replies". ??????????
Next I want to learn how to post a picture. I waste my life trying to learn these things........There we go! I've just figured it out!! If you want to live a long time after kidney cancer, GET OFF THE COMPUTER!!!!!!!!!!!!!!!!!
You could be spending time robbing banks, playing golf, riding your motorcycle, or exercising. This damn pile of diodes, chips and resistorsis is killing me faster than cancer ever will. (With that said, )"Have a nice day."
Hi Gary.. GREAT... a perfect answer.. thanks..!
Ron
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Olde GuysGSRon said:Gary
Hi Gary.. GREAT... a perfect answer.. thanks..!
Ron
OK, this is a good video... kind of inspirational and all that... OK it has 2 wheels...
http://www.youtube.com/watch?v=vksdBSVAM6g&feature=player_embedded
Ron
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BSAGSRon said:Olde Guys
OK, this is a good video... kind of inspirational and all that... OK it has 2 wheels...
http://www.youtube.com/watch?v=vksdBSVAM6g&feature=player_embedded
Ron
OK, so here ya go... something to move the soul... 2 wheels of course..! http://www.youtube.com/watch?v=F2DJLVWZASw
Ron
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Helpful..?GSRon said:BSA
OK, so here ya go... something to move the soul... 2 wheels of course..! http://www.youtube.com/watch?v=F2DJLVWZASw
Ron
OK, like some.? of us, I have more than the one health issue... and we could say anything else is minor.. or..? I have had bad sleep apnea for a long time.. Last night was my second night with a CPAP machine... what a difference..! Maybe I am being over optimistic, but I am hoping that getting a true good night's sleep will help my body fight the Cancer... maybe that is false hope, but in any case it should help with the drugs I am about to start on...
Comments please...
Bless all of you..!!
Ron
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Familial RCC
THere is a decent chance that your RCC is genetic. I am part of the Familial RCC study at NIH. if you contact Linsdey Middleton at NIH (google is your friend). She can at minimum answer a lot of questions for you.
In my case, my father and grandfather had it. I was diagnosed with a 5.5 cm RCC at the age of 48 (Stage 1B grade 4 with sacomotoid feature). The nephrectomy was last summer. I participated in the NIH familial study last Dec. There, they found a 1.5 or so cm mass on my lung. That was removed this past week at NIH. they are still trying to figure out if it is a primary lung cancer or met.
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