Newbie Intro
Comments
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CPAP MachineGSRon said:Helpful..?
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
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
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A good night's sleepGSRon said:Helpful..?
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
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
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Hi All.. OK, first, yes Idhs1963 said: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.
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...
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Stuff and...GSRon said:Hi All.. OK, first, yes I
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...
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....
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You guys sure talk about Golf a lotfoxhd 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."
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...
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4-ball + Caddyroaddr23 said:You guys sure talk about Golf a lot
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...
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!
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4-ball + Caddy...Texas_wedge said:4-ball + Caddy
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!
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.
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A new pic..GSRon said:Stuff and...
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....
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
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Votrient after 1 monthGSRon said:A new pic..
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
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
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Liver enzymesGSRon said:Votrient after 1 month
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
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?
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you deal wellTexas_wedge said:Liver enzymes
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?
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.
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Anti CD47Texas_wedge said:Liver enzymes
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?
Hey Tex,
A long CD47 discussion (on KIDNEY_ONC) was provoked by this:
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
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CD47NanoSecond said:Anti CD47
Hey Tex,
A long CD47 discussion (on KIDNEY_ONC) was provoked by this:
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
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.
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Dealing...NanoSecond said:Anti CD47
Hey Tex,
A long CD47 discussion (on KIDNEY_ONC) was provoked by this:
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
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
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Lock the Door..!!GSRon said:Dealing...
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
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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