Sorta new to this roller coaster and new to CSN

Joe_fh

ShaggyHD said:

Thanks!
I think I aw that one before. I know what you now mean by the kevlar ones. Thanks!

Kidney belts for riders
I am not sure if we're allowed to post links here ..

... but ebay has good selection of Kidney belts for us riders.

ebay link:
http://www.ebay.com/sch/sis.html?_nkw=A23-Motorcycle-Riders-Kidney-belt-New-Mens-Back-Belts-S-

I hadn't given it much thought since it looks like I will miss the rest of this riding season. But the point is good, I should get one too. Since we have all given up our spare part now, we need to add extra protection to the one that we have left.

And Shaggy, you should check you local leather shops.. Around here we got a lot of people doing custom work for spare coinage.

ShaggyHD

Joe_fh said:

Kidney belts for riders
I am not sure if we're allowed to post links here ..

... but ebay has good selection of Kidney belts for us riders.

ebay link:
http://www.ebay.com/sch/sis.html?_nkw=A23-Motorcycle-Riders-Kidney-belt-New-Mens-Back-Belts-S-

I hadn't given it much thought since it looks like I will miss the rest of this riding season. But the point is good, I should get one too. Since we have all given up our spare part now, we need to add extra protection to the one that we have left.

And Shaggy, you should check you local leather shops.. Around here we got a lot of people doing custom work for spare coinage.

local.
I do not shop ebay. But thanks for the thought. I try doing local indie shopping where i can. the only leather shop around here does not really sell that stuff - just the even t import leathers.

I did look into so indy leather crafstmen but found a leather supply shop and started to think about trying to make one myself.... then the nagging began "it will cost you more for the leather tools than to buy one not counting the mistake and leather costs!" and it stopped there....

but now you mention it i should heck them out to see if they know anyone who does the leather work close by!

why do women always want to prevent u from collecting tool?

JackieP125

ShaggyHD said:

local.
I do not shop ebay. But thanks for the thought. I try doing local indie shopping where i can. the only leather shop around here does not really sell that stuff - just the even t import leathers.

I did look into so indy leather crafstmen but found a leather supply shop and started to think about trying to make one myself.... then the nagging began "it will cost you more for the leather tools than to buy one not counting the mistake and leather costs!" and it stopped there....

but now you mention it i should heck them out to see if they know anyone who does the leather work close by!

why do women always want to prevent u from collecting tool?

Hello Shaggy
Sorry you had to find us this way but welcome. There are a lot of good people here and we all have a common bond "Kidney Cancer". Please keep us updated on your progress. We are all praying for you to have a smooth recovery and many years of riding in wind. As far as why women want to prevent men from collecting tools. We have a two car garage, a stand alone garage and a shed all full of tools. When we need something my husband has no idea where it is so he buys another one just like it. We now have two of every tool in the universe and still can't find them. LOL... I guess that is why!!!

ShaggyHD

JackieP125 said:

Hello Shaggy
Sorry you had to find us this way but welcome. There are a lot of good people here and we all have a common bond "Kidney Cancer". Please keep us updated on your progress. We are all praying for you to have a smooth recovery and many years of riding in wind. As far as why women want to prevent men from collecting tools. We have a two car garage, a stand alone garage and a shed all full of tools. When we need something my husband has no idea where it is so he buys another one just like it. We now have two of every tool in the universe and still can't find them. LOL... I guess that is why!!!

multiples
So that is how it works! If you have one of something you cannot buy a second! I will try this when the subject of jewelery comes up next! - " Oh no! You already have a pair of earrings! you do not need another!"

Raine22

Roller Coaster Ride
I too am a T3a with 11 cm tumor, Furhman grade 4 - removed 3/12. I was put into a clinical study for Votrient/pazopanib or placebo. This is a study for those at high risk in which the cancer has not metasticized. Some stage 4 patients are already taking this and seeing great results to their mets.

Did your doctor suggest anything such as studies available or anything other than "see you in a few months"?

Welcome to the kidney cancer circus!

Lorraine

Limelife50

ShaggyHD said:

Thanks!
I think I aw that one before. I know what you now mean by the kevlar ones. Thanks!

Welcome Shaggy
Hey is your dog named scooby

ShaggyHD

Limelife50 said:

Welcome Shaggy
Hey is your dog named scooby

not scooby
no his name is winston.

ShaggyHD

Raine22 said:

Roller Coaster Ride
I too am a T3a with 11 cm tumor, Furhman grade 4 - removed 3/12. I was put into a clinical study for Votrient/pazopanib or placebo. This is a study for those at high risk in which the cancer has not metasticized. Some stage 4 patients are already taking this and seeing great results to their mets.

Did your doctor suggest anything such as studies available or anything other than "see you in a few months"?

Welcome to the kidney cancer circus!

Lorraine

no trials
he said there are not trial in the area - the closest is philly or NYC but if i wanted to travel.... if i remember correctly. But I have concern for time off at work and loosing my job if i take too much time traveling. The insurance coverage now is really important now and since we (T3 RCC patients) do not qualify for disability i have to be concerned about my income. so the travel (1.5 hrs minimum each way to philly - about 2 hrs to NYC minimum even with the trains)

I am thinking i have more fear about my condition than they do. Just having a hard time accepting stage 3 with IVC involvement is considered "found early" i guess. Maybe a my follow up scans come and go clear I may believe them more. I get the feeling that having both a urologist and oncologist is overkill and they thinks so as well as all they can do is cut it out and hope like they have for the last 100 year.

JackieP125

ShaggyHD said:

no trials
he said there are not trial in the area - the closest is philly or NYC but if i wanted to travel.... if i remember correctly. But I have concern for time off at work and loosing my job if i take too much time traveling. The insurance coverage now is really important now and since we (T3 RCC patients) do not qualify for disability i have to be concerned about my income. so the travel (1.5 hrs minimum each way to philly - about 2 hrs to NYC minimum even with the trains)

I am thinking i have more fear about my condition than they do. Just having a hard time accepting stage 3 with IVC involvement is considered "found early" i guess. Maybe a my follow up scans come and go clear I may believe them more. I get the feeling that having both a urologist and oncologist is overkill and they thinks so as well as all they can do is cut it out and hope like they have for the last 100 year.

Overkill
I have a Urologist and an Oncologist. I was Stage 1, Grade 3. I think we need both for our own comfort. My Urologist takes care of my remaining kidney and the Oncologist orders my CT Scans.

ShaggyHD

JackieP125 said:

Overkill
I have a Urologist and an Oncologist. I was Stage 1, Grade 3. I think we need both for our own comfort. My Urologist takes care of my remaining kidney and the Oncologist orders my CT Scans.

one of each
that is about how it is for me i thin. The Urologist specializes in urological oncology or spent a good deal of his training doing so. That has me confused too - if he specializes in both why do i need and onc?

I asked if i should see one and he just shrugged and said if i want to - he would recommend some... I asked who the primary would be and he shrugged again - neither - we would work together....

Oh well. someday i may learn how to deal with doctors. I guess I will just wait for the sun and hope for a ride.

adman

JackieP125 said:

Overkill
I have a Urologist and an Oncologist. I was Stage 1, Grade 3. I think we need both for our own comfort. My Urologist takes care of my remaining kidney and the Oncologist orders my CT Scans.

Nephrologist

what you really need is a nephrologist to advise you on your remaining kidney.

ShaggyHD

adman said:

Nephrologist

what you really need is a nephrologist to advise you on your remaining kidney.

why?
why? What wold they provide me that the urologists who get the blood results would not be able to tell me? not sure i know what benefit they would provide.

adman

ShaggyHD said:

why?
why? What wold they provide me that the urologists who get the blood results would not be able to tell me? not sure i know what benefit they would provide.

in my opinion....

I'm not a Dr. I don;t know anything about you. Your lifestyle. The types of food you eat, where you eat out, how much you drink, etc. You could have the very best diet in the world, or you could eat like crap.

You go to an expert that specializes in kidneys, not a 'generalist' who covers all of the Urological areas. Nephrologists understand how kidneys react to food, medication, etc. I'm not saying all Urologists don't have a grasp on this as well, I don't know the Dr you go to, but for me, I would rather see a specialist that is used to working with people with Late Stage Kidney Failure and learn how to avoid these issues in advance of something serious happening.

I'm currently reading a great book "Coping with Kidney Disease" - Mackenzie Walser, MD.
An enlightening read on how kidneys work and what we can do to prevent the need for dialysis down the road.

I'll give you an example. The book advocates for a reduction in protein down to 20 grams/ day. All I was told by my Dr was to limit protein consumption, nothing specific.
I eat a mostly vegetarian diet. I've done that for the past few years, long before I had my surgery. I didn't know that there are 'better' vegetables to eat that have lower phosphorous counts and less protein than some others.

You can drive yourself insane with this stuff and not live your life. I'm a thinker, so I analyze things. People pay me a lot to do that. In my own life I do the same. Whatever makes you happy my friend.

God Bless!!

ShaggyHD

adman said:

in my opinion....

I'm not a Dr. I don;t know anything about you. Your lifestyle. The types of food you eat, where you eat out, how much you drink, etc. You could have the very best diet in the world, or you could eat like crap.

You go to an expert that specializes in kidneys, not a 'generalist' who covers all of the Urological areas. Nephrologists understand how kidneys react to food, medication, etc. I'm not saying all Urologists don't have a grasp on this as well, I don't know the Dr you go to, but for me, I would rather see a specialist that is used to working with people with Late Stage Kidney Failure and learn how to avoid these issues in advance of something serious happening.

I'm currently reading a great book "Coping with Kidney Disease" - Mackenzie Walser, MD.
An enlightening read on how kidneys work and what we can do to prevent the need for dialysis down the road.

I'll give you an example. The book advocates for a reduction in protein down to 20 grams/ day. All I was told by my Dr was to limit protein consumption, nothing specific.
I eat a mostly vegetarian diet. I've done that for the past few years, long before I had my surgery. I didn't know that there are 'better' vegetables to eat that have lower phosphorous counts and less protein than some others.

You can drive yourself insane with this stuff and not live your life. I'm a thinker, so I analyze things. People pay me a lot to do that. In my own life I do the same. Whatever makes you happy my friend.

God Bless!!

Late Stage Kidney Failure
not near Late Stage Kidney Failure as far as i know and from what i was told my kidney was healthy and if not i would agree with you. I do not understand why would you recommend a specialist? Do you see one?

As for me
i do not drink any more (actually quit month before )
i try to eat low salt - though that is tough
I rarely eat out - I prefer to cook my own food and sometimes is actually less expensive. Had a lot of heart burn issues and eating out would have me up all night puking and pre-hypertension leading up to the discovery (who knew they were related! shrug) so i tried to eat a bit healthier to avoid these issues.

I am sure if they had concerns for my kidney i would have been refereed to a nephrologist.

I am not trying to stir things up with my question jut trying to understand why you think i need one. I was just wondering why i need more doctors and not less seeing that my urologist specialize in urology-oncology. Would that not be more of a specialist in Kidney cancer than a plain old Oncologit?

as for diet - i was only told to avoid sodium

And i just came to realize. all these internet forum places are a waste of time. later.

adman

ShaggyHD said:

Late Stage Kidney Failure
not near Late Stage Kidney Failure as far as i know and from what i was told my kidney was healthy and if not i would agree with you. I do not understand why would you recommend a specialist? Do you see one?

As for me
i do not drink any more (actually quit month before )
i try to eat low salt - though that is tough
I rarely eat out - I prefer to cook my own food and sometimes is actually less expensive. Had a lot of heart burn issues and eating out would have me up all night puking and pre-hypertension leading up to the discovery (who knew they were related! shrug) so i tried to eat a bit healthier to avoid these issues.

I am sure if they had concerns for my kidney i would have been refereed to a nephrologist.

I am not trying to stir things up with my question jut trying to understand why you think i need one. I was just wondering why i need more doctors and not less seeing that my urologist specialize in urology-oncology. Would that not be more of a specialist in Kidney cancer than a plain old Oncologit?

as for diet - i was only told to avoid sodium

And i just came to realize. all these internet forum places are a waste of time. later.

I'll acquiesce....

....and defer.

toolman1

JackieP125 said:

Hello Shaggy
Sorry you had to find us this way but welcome. There are a lot of good people here and we all have a common bond "Kidney Cancer". Please keep us updated on your progress. We are all praying for you to have a smooth recovery and many years of riding in wind. As far as why women want to prevent men from collecting tools. We have a two car garage, a stand alone garage and a shed all full of tools. When we need something my husband has no idea where it is so he buys another one just like it. We now have two of every tool in the universe and still can't find them. LOL... I guess that is why!!!

Tools
Welcome Shaggy. I'm a newby here also, and am learning day-by-day, about this disease stuff.
Tools, you want tools? My handle (screen name) has stuck with me for better than 20 years, having been a Snap-On Tools dealer here in SoCal. I was called by many nicknames, (not all of them kind), but the one that "stuck" by most of my customers was Toolman. This just seemed like an appropriate time for that explanation. Forgive the indulgence.

Best of luck in your treatments, and as others have stated, we will always be here for you.

Limelife50

ShaggyHD said:

why?
why? What wold they provide me that the urologists who get the blood results would not be able to tell me? not sure i know what benefit they would provide.

Hey Shaggy
I agree i think your urologist is more than qualified to moniter your remaining kidney,but as far as your RCC path report is concearned due to the grade and size of your tumor i think you should consult with a oncologist who speacializes in RCC and please we are only trying to support each other and we are not a waste of time.Have a nice day Shaggy

dl650a

Belated welcome
Hi Shaggy,
A belated "welcome" to the forum. My surgery was just over 6 months ago and I am currently waiting for my first set of follow-up results.

I asked my urologist if there was any benefit to riding a motorcycle with a kidney belt. He didn't seem to think there was any significant difference.

Ed