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GSRon's picture
GSRon
Posts: 1211
Joined: Jan 2013

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

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

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!

GSRon's picture
GSRon
Posts: 1211
Joined: Jan 2013

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 Smile

garym's picture
garym
Posts: 1651
Joined: Nov 2009

We can't all be perfect...LOL

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

Nice to meet you Ron. And let me wish you outstanding success on Votrient.

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

Stay on top of your dr. and tests. Many are doing well with the votrient. Does Gold Star Ron ride an old BSA? That's not what is in your picture.

KJones1969
Posts: 158
Joined: Mar 2012

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

GSRon's picture
GSRon
Posts: 1211
Joined: Jan 2013

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

Me having a fun ride in 2004

GSRon's picture
GSRon
Posts: 1211
Joined: Jan 2013

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

Me having a fun ride in 2004

GSRon's picture
GSRon
Posts: 1211
Joined: Jan 2013

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

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

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.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

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.

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

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.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

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)

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

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.

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

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."

GSRon's picture
GSRon
Posts: 1211
Joined: Jan 2013

Hi Gary.. GREAT... a perfect answer.. thanks..!

Ron

GSRon's picture
GSRon
Posts: 1211
Joined: Jan 2013

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 :)

GSRon's picture
GSRon
Posts: 1211
Joined: Jan 2013

OK, so here ya go... something to move the soul... 2 wheels of course..!   http://www.youtube.com/watch?v=F2DJLVWZASw

 

Ron :)

GSRon's picture
GSRon
Posts: 1211
Joined: Jan 2013

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

HPRonhovde
Posts: 22
Joined: Feb 2013

Ron,

I've been on a CPAP machine for about eight years now.  I did not find it to be as effective as other had told me it had been for them.  I had a new study done recently and they increased the pressure from 8 to 12 so now I do sleep some what better but nowhere near a perfect nite's sleep yet. 

I wish you the best with your new machine.  Some people find it difficult to sleep with something on their face.  One suggestion is if they did not give you one with a water tank and heater I would ask your doctor to change the prescription for it.  I have found that especially with my higher pressure my mouth gets very dried out over night.

 

Good luck,

Ron

 

NanoSecond's picture
NanoSecond
Posts: 519
Joined: Oct 2012

Hi Ron,

I can guarantee that getting a good nights sleep will certainly help your body fight cancer.  That is one big reason I take Melatonin at night - although the primary reason is that Melatonin itself is powerful cancer fighting hormone.

BTW, did you receive my email to you with the guide to diet and supplements attached?  I ask because I had to send it twice - I got an error message that my first email had bounced.

Best wishes,

 

-Neil

roaddr23's picture
roaddr23
Posts: 77
Joined: Jan 2013

I have never played but my Uncle owns an awesome course just outside of Traverse City, Michigan. It was built on the family's old Cherry Farm and it was built like the ones in Scotland..the course is built on the lay of land only...the way it is...no grading etc...it is supposed to be an awesome one...I have been there and it looks beautiful to me but I know nothing about golf as I said. My Uncle Jim Maitland and his wife own and run it. It is called Lochenheath...check it out you might like it...just a thought...

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

Looks like a fabulous course and certainly wouldn't look out of place in The Home of Golf, bidding to justify that cheeky strapline on the website "Invented in Scotland, Perfected in Traverse City".

Ok chaps!  Easier to arrange if I'm the only one to travel!  We'll expect an RCC VIP reception,  Roadie, especially for the ultra high-risk category (i.e.  golfing  bikers called Larry or Gar(r)y who are engineers, living in Michigan).

You wouldn't have enjoyed Carnoustie on Mon or today - both days we quit after 13 holes.  This morning it was just above  freezing but with about a 4-5 club wind blowing straight across from the Moscow direction (we're a little north of Moscow!) so the effective temp in the biting wind was well below freezing and with the beginning of fog and rain, no great joy!

garym's picture
garym
Posts: 1651
Joined: Nov 2009

I happen to own a small place in Northern Michigan's golf mecca, so the lodging is on me.  There's 2 or 3 feet of snow covering everyting right now so there is time to plan.

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

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.

GSRon's picture
GSRon
Posts: 1211
Joined: Jan 2013

Hi All..  OK, first, yes I got the e-mail, thanks..!   I had already modified my diet several times of the last almost 2 years, and I just did that again.  More plant like "stuff" and less well almost none of the bad stuff.  I cut out like 99% of the dairy, and about the same for any processed foods.  I have (again) made some of my own veggie soups... use lots of spices just no salt..  Lots more Garlic, I love that stuff anyway... etc.  Oh yes, but I do continue on eating more fish...

The CPAP is helping me...  even though I sometimes wake up at  night, I just roll over and go back to sleep..  Where before I would get up once or twice for the bathroom...  And I no longer have the need for a nap in the middle of the day... that part is good overall..

Last week I had a Nuclear Stress Test... get the results in a couple of days...  I had no trouble with the treadmill part.. in fact they kept turning up the speed and the incline so it would not take all day... heh..   I do need more exercize... and plan to buy my own treadmill, I happen to like using one..

But tomorrow a package is to arrive... a box full of expensive pills..  the Votrient...  more good(ish) news is that between my Medical Insurance and Stanford, my co-pay is almost cheap..!!  Well, I can afford it for sure... no where near as much as I was initially told... whew..!

Thursday is my next Onc visit...  I will wait to start the drugs until after that visit... Thanks to YOU all, I now have a whole list of questions... Thanks to all again..!!   I am still a newbie and just here for the "ride" many of you have already gone down the path....

Cheers.!

Ron - I don't want a pickle... jus wanna ride my motor sickle...

GSRon's picture
GSRon
Posts: 1211
Joined: Jan 2013

Hi All.!

OK, just a few days on the Votrient.. not bad so far... blah blah blah.. you heard it all before... heh...

So, for entertainment purposes... and for those that never heard it... here is a link to my latest "mantra"... The Motorcycle Song.. the words are well.. somewhat inspiring and somewhat funny and somewhat how I feel....  enjoy and be well..

Ron - I don't want a pickle.. jus wanna ride my motor sickle....

http://www.youtube.com/watch?v=g266Uwp6ZnI

GSRon's picture
GSRon
Posts: 1211
Joined: Jan 2013

Hi All..!  Seems like I am not the newbie anymore... but still feel like I know very little about RCC..  However based on some of the recent postings on some people a lot newer than me.. and those that are awaiting sugery, I temporarily changed my picture...  I am a bit of a show off.. heh..  Notice the size of MY incision..!!  If you think your's is/was big... not likely near the size of mine..!  It got named "The Mercedes"..  Yes it goes from the breast bone to just above the navel and all the way on both sides..!   Yes, as bad as the surgery was, I stood up on day 2 to use a comode, and was walking by day 3... well shuffling my feet that is..!  I had all the hoses etc hooked up, so it took two nurses to move the eauipment while I shuffled my feet down the hall...  I was flirting with the nurses and waving to all I could see... YES, I survived..!!    So for those waiting on the surgery... sure you will have pain when you wake up.. sure it is all scarey... but the YES factor when you realize you made it through that initial battle...   My first year was pretty good... and I used to tell people that I met the Devil face to face and kicked his butt... however the RCC has now returned... but the Votrient is very tolerable... another month until I find out if it is working...

Keep a positivie attitude.. ask questions from your doctors.. go forward..!

Be well all..!

Ron

GSRon's picture
GSRon
Posts: 1211
Joined: Jan 2013

Hi All..!!  OK, so my doctor visit today went less than I hoped for... actually it kind of sucked... but it could be worse..  Two things of concern.. my Liver is not happy... the Enzymes are out of whack.. (Whack is a highly technical term ya know..!)..   And I lost 14 pounds in a month...  So, I am off of the Votrient for a week.. then new blood tests to see if my Liver redeems itself..!  If it does, then I will likely be on a reduced dose of Votrient (was on 800 mg a day). If not.. well... I rather not think about that right now...  And as many of you know.. this is not unusual....  All my other blood tests were normal...  

The weight loss is a concern, and my Doctor wants me to try and put some of it back on... OK... likely not a big deal at this point.

I also got to review my last scans in detail... I have like 6 mets in my one lung and 4 iin the other... still pretty small in size.. only one met was bigger than a small spot... whew..!  Talked about scans with contrast and was told for lung observation, no need for contrast to get a good picture..  I asked about scanning my entire body, and was told no need at this point... OK.. I am good with that...

No word on the CD45... guess that is still "in the works"....  more to follow when I hear something...

Ron

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

Doesn't sound too bad to me Ron.  You've been getting advice that seems dead on, to me.  

I'll be getting my second scan on Votrient later this month but have had bloods checked regularly, of course.  My liver enzymes shot up in the first month but settled down again and were fine at last check and that was staying on 800 mg/day and with no break so far. 

Weight aside, I think you're doing well (and of course you're aware of the thread I started on ACOR about my weight loss on Votrient - a discussion which has attracted a large number of replies, comparing of notes, and advice).

By the way, what is CD45?

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

Ron, you deal well with this kidney cancer trip. Reminds me of someone else I know who loves his motorsickles. One step at a time. Then look things over, make  changes as appropriate, then do it all over again. In the meantime, keep the shiney side up.

NanoSecond's picture
NanoSecond
Posts: 519
Joined: Oct 2012

Hey Tex,

A long CD47 discussion (on KIDNEY_ONC) was provoked by this:

http://www.newsmaxhealth.com/Health-News/Cancer-Drug-Kills-Every-Kind-of-Tumor-Study/2013/03/28/id/496736

However, if you do a search you will find lots of other interesting CD47 - Kidney research such as this:

http://www.ncbi.nlm.nih.gov/pubmed/22859854

Sorry to hear about that recurring pain.  I wish I had some useful ideas to share but I am at a loss so far.

 

-N

 

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

Yes, I assumed Ron had misremembered but just wanted to be sure.  He said he was going to ask about it since it comes out of Stanford, where he's being treated, with a view to getting in on the act if possible.

I'm seeing my Onc tomorrow so we'll be discussing pain in the morning.  Will let you know the outcome.

GSRon's picture
GSRon
Posts: 1211
Joined: Jan 2013

OK guys thanks for the messages..  Let's see, how do we deal with RCC..?  Years ago I learned from a paraplegic pal of mine... a car took his legs out from him, only months after his tour of duty in Nam...   He always laughed when he told his story... I asked him how could he laugh..?  He said when something really bad happens you have basically 3 choices.. 1 blow your brains out.. 2, cry woa is me and become a burden, or 3 smile and move forward...   Moving forward is what he did, and what I am trying to do....

So, I have a couple of days off of work.. time to have fun with my pals..!

Be well all...

Ron

GSRon's picture
GSRon
Posts: 1211
Joined: Jan 2013

I sure wish someone would lock the door to this wretched place..!   I may be still new here.. but seeing how many other newbies show up here... is well.. sad.. to say the least...

Can't someone find the "key" and lock the door..??  (ie: find a real cure..)..

Be Well All..!

Ron - rant over..!

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