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New here and surgery is Nov 6th :-) !!

RichardB63's picture
RichardB63
Posts: 56
Joined: Oct 2012

Partial neprectomy, 2.2 by 2.3 cm's on right kidney. Male 48, live around Houston Texas and having the surgery at MD Anderson (pretty blessed :-). They will watch a few very small things on my lungs.... Just riding a little rollercoaster right now....

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

Here's hoping Texas establishes a reputation for having the very smallest things! It doesn't sound as if you have too much to worry about at present, apart from Hurricane Sandy. Good luck but, at 48, tiny tumour and MDA on your case, you won't need much luck to be fully cured before you can say knife.

RichardB63's picture
RichardB63
Posts: 56
Joined: Oct 2012

I know I am blessed,(that's not the way it feels sometimes). :-) Bless the people in the path of Hurricane Sandy, I have family and friends that live along her path...

I was wondering if anyone else had pain in their mid back region? I hurt my lower back on June 9th 2012, which started me on this journey. I have a steady pain that gets worse when I am inactive (sleeping 4hrs,driving or sitting). Strangely enough it gets better for a few days after riding my Harley :-) Two Wheel Therapy The Dr's and nurses don't believe it is from the tumour.

The lower back pain is better after the first month, but the mid pain made me persist in getting a MRI after 2 months of dealing with it :-). My hard headedness knew something wasn't right.

Busy, busy,busy this week prepping for surgery next week. I did rent a beach house in Galveston for the Lone Star Rally this weekend. I am going to have a little fun before.. Richard

RichardB63's picture
RichardB63
Posts: 56
Joined: Oct 2012

What are some of the best supplements to take and stay away from ????

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

Richard, I'm a bit pushed for time at the moment so just a few quick thoughts. Avoid high protein supplements (unless in the context of a calorie-dense diet to combat excessive weight loss). Multivitamin supplementation is sometimes a good idea. Extra vitamin D is advisable for the elderly or those who may be 'cabin bound' either at home or in an institution. Certain vitamins are helpful in certain situations, e.g. folic acid, vitamin B12 (especially if you're on a vegan or very restricted veggie diet).

[I use a variety of dietary items such as adding milled flaxseed and wheat germ to my large bowl of oatmeal porridge which is my daily breakfast, along with a B complex vitamin, co-enzyme Q10, extra vit C powder in grapefruit juice and green tea (with, alas, large volumes of rocket fuel which I need to cut down). However, we're all very different and I'm a decidedly non-standard product so what I do is likely to be bizarre and not generalisable.]

"anticancer: a new way of life" book (and also superb video available free online on YouTube thanks to MD Anderson) by the late Dr. David Servan-Schreiber is excellent. I have a raft of books on human nutrition and dietetics, allergy, food intolerance etc etc but I suggest a good additional resource for you would be to contact NanoSecond (offline, perhaps) for his thoughts on diet, based on his use of Dr. Block's "Life over Cancer". I take precisely the same view as Nano on these issues.

NanoSecond's picture
NanoSecond
Posts: 613
Joined: Oct 2012

Many thanks for the support, Texas!

Richard, please contact me offline (n.feldman@videopost.com) and I will send you a list of my diet and the supplements I am taking - but most importantly, I will try to show WHY. I don't like the idea of just listing things without understanding the reasoning that went into any of my decisions.

Your diet has to come first. Otherwise all the other supplements in the world are going to be mostly self-defeating. Your diet is your first level "chemo". I am not being facetious.

Aside from Dr. Servan-Schreiber's wonderful book you need to get your hands on "The China Study" and/or view the very well done documentary, "Forks Over Knives."

Then google search for the TED talk by Dr. William Li: "Can we eat to starve cancer?"

Finally, think this thing through. You may not like the idea that one needs to give up meat AND diary products (but not fish) in order to possibly succeed in this fight. But the solution to defeating something as "clever" as cancer is certainly going to be an Holistic one. It defies my comprehension that one would ONLY take a single targeted drug (in my case for example, it is currently Sutent) and then just wait around until it stops working. And then only to go on to the next one. Is there nothing more one can do to: help the drug work better; reduce the awful side effects; prevent new metastases; improve one's quality of life; ultimately go NED??

That is the basic question that I am trying to answer for myself. And I am happy to share what I have discovered so far.

ourfriendjohn's picture
ourfriendjohn
Posts: 72
Joined: Jun 2012

Richard,

Welcome to the group. You just don't know how blessed you were to have found the mass. (Or perhaps you do.) Mine, a 17.5 cm whopper, was found during a routine physical. I had dismissed the mild back-ache I had when sitting or driving as just "too much windshield
time". Boy, was I wrong. One year and a right radical nephrectomy later I am doing great and have my second set of scans later this week. Try to get in some exercise between now and the surgery if you can. It helps.

I'm sure "Dr." Fox, our resident motorcycle therapist, will have comments on the healing powers of a Harley.

John

RichardB63's picture
RichardB63
Posts: 56
Joined: Oct 2012

John,

Yes I realize how blessed I am for finding it early :-) Good luck on your second set of scans. I have been exercising daily, prepping for the surgery....

My Harley has always been my two wheel therapy (mostly mental before, but a little physical now) :-) I was determined to get a MRI after the lower back pain, when it went away I persisted because of the mid back pain. Insurance finally agreed after 2 months...

Thanks, Richard

RichardB63's picture
RichardB63
Posts: 56
Joined: Oct 2012

John,

Yes I realize how blessed I am for finding it early :-) Good luck on your second set of scans. I have been exercising daily, prepping for the surgery....

My Harley has always been my two wheel therapy (mostly mental before, but a little physical now) :-) I was determined to get a MRI after the lower back pain, when it went away I persisted because of the mid back pain. Insurance finally agreed after 2 months...

Thanks, Richard

RichardB63's picture
RichardB63
Posts: 56
Joined: Oct 2012

Thanks Nano and Tex,I will contact you shortly. I have been doing a little research also. I have went pretty well to a 80 - 20 vegs to fruits, Cut out meats, dairies, sugar and processed foods. It will be good to see what is on your site :-) I believe you have to help your body give itself a fighting chance... Thanks Richard

NanoSecond's picture
NanoSecond
Posts: 613
Joined: Oct 2012

Hi Richard,

I have replied to you off line but I just saw this. You already have the basics well covered. Many people come around to giving up meat -- but don't understand that you have to give up all the diary products at the same time - or you don't get the cancer-fighting benefits suggested by The China Study.

The other stuff is essential as well: no sugar (alas no more alcohol or fruit drinks); the lowest amount of carbs - fruits are carbs (so favor the various colored berries and not citrus and eat them on an empty stomach).

It is the ratio of Omega-3's to Omega-6's that is essential. Plus no vegetable oils for cooking (except low heat like Coconut oil). If using Olive oil, only extra virgin pressed (with the least amount of refining)...

Add lots of mushrooms: Shiitake, Maiitake, and Reishi are favored.

There's a whole lot more, but you already seem to get it.

RichardB63's picture
RichardB63
Posts: 56
Joined: Oct 2012

Thanks, that is a bunch of good info to digest.:-) I will be checking things out... I have worked pretty good on the diet, but still working on my discipline...

Richard

icemantoo's picture
icemantoo
Posts: 1659
Joined: Jan 2010

Richard,

As far as prognosis you should be doing fine. As for the diet try and follow it, but my motto is to try and follow it with moderation and a good steak every week is moderation.

Icemantoo

RichardB63's picture
RichardB63
Posts: 56
Joined: Oct 2012

The diet isn't to bad yet :-).... I do like your moderation theory... I have been pretty disciplined for the last 6 weeks or so. The first couple of weeks I went way overboard. I have been sticking to it, but if I want something I usually will go ahead but try not to more than once a week, and small portions. The want for the steak hasn't hit me yet, but this is a long journey :-)

Thanks everyone, I love this site. Being able to see other people lives that are going thru the same thing is very helpful.... I was asked when I first found out, well you are still running hard :-) My reply was what do you want me do? Sit on the couch and cry? I do and have but I don't let it consume me :-)

Richard

Raine22's picture
Raine22
Posts: 33
Joined: Jun 2012

Richard, welcome to the board! Just wanted to say hello as I am being treated at MDA and had my surgery 3/28/12 and came home the afternoon of 3/30/12. T3a, Furhman grade 4. I am currently on the Votrient double-blind study, so I am at MDA on a regular basis. I am 49 yo female and upon learning my diagnosis, my life has turned completely upside down! I hope you enjoy your weekend in Galveston - the weather looks, beautiful! Keep us posted on your surgery - you will be in my prayers. Your neighbor, Lorraine

RichardB63's picture
RichardB63
Posts: 56
Joined: Oct 2012

Yes I understand the upside down part...Keep your chin up :-) I live over in Laporte. Dr Christopher Wood is my Surgeon (do you know him)?? Two days and out, that was quick... The weather is warming up just in time for the rally, I sure look at things a little different. Things have been a blur here also. We do have one of the best hospitals I have ever been to, and I have been saying that way before becoming a patient :-). God bless you, and will be in my prayers also.
Great smile Lorraine
Your neighbor hope to see you down there, Keep smiling.

Richard

foxhd's picture
foxhd
Posts: 2066
Joined: Oct 2011

Get well quickly Richard. When I was able to get back on my bike for a short ride, my wife told me that I came home with a sh*t eating grin. Sure felt good.

RichardB63's picture
RichardB63
Posts: 56
Joined: Oct 2012

Yes I know, I always feel better after a ride :-) How long did it take you to get back on? My Dr. said 6 to 8 weeks before picking up 10 pounds... My main concern is my grand daughter she is around 20 :-) I guess I will have to have someone put her on my lap :-)

Richard

foxhd's picture
foxhd
Posts: 2066
Joined: Oct 2011

It was probably 3 weeks. I had a radical nephrectomy and my stomach area was pretty sore. I had to watch for tearing my incision and muscles. But I did enjoy my early rides as they were very therapeutic.

RichardB63's picture
RichardB63
Posts: 56
Joined: Oct 2012

That's good to hear, I wasn't for sure how long it is taking people to get back to doing some things :-)

foxhd's picture
foxhd
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Joined: Oct 2011

I looked back at some earlier posts and saw that I was weight training, jogging and golfing in a month. At a lower intensity though.

RichardB63's picture
RichardB63
Posts: 56
Joined: Oct 2012

I guess I will have to feel my way through this :-)

RichardB63's picture
RichardB63
Posts: 56
Joined: Oct 2012

I have a lot of questions before surgery.... What are some questions that I should ask the Dr. before the operation and after. Everyone here has been going through this, and I am sure there is some question which they wished they had asked.. When they do the pathology, do you need to tell them to save some of it ??

The closer I get to surgery, the more worries I have... Just trying to cover all my bases before hand. taking the M/C out for a few days before. I have beeen having steady pain across my mid back for several months, did anybody else have this type of pain??? I wouldn't let them shoot it up with steroids last week at the pain amnagement... My reasoning was I was to close to surgery and I didn't want one Dr pointing at the other :-)

Thanks Richard In Texas any help will do

icemantoo's picture
icemantoo
Posts: 1659
Joined: Jan 2010

Richard,

Since your surgery is Tuesday make sure you vote Absentee before hand. Being in the hospital should qualify you for an absentee ballot. In keeping with the season and depending on your political persuasion you may want to give the tumor a name such as Obamano or Romnesia.

Icemantoo

icemantoo's picture
icemantoo
Posts: 1659
Joined: Jan 2010

Richard,

Since your surgery is Tuesday make sure you vote Absentee before hand. Being in the hospital should qualify you for an absentee ballot. In keeping with the season and depending on your political persuasion you may want to give the tumor a name such as Obamano or Romnesia.

Icemantoo

icemantoo's picture
icemantoo
Posts: 1659
Joined: Jan 2010

Richard,

Since your surgery is Tuesday make sure you vote Absentee before hand. Being in the hospital should qualify you for an absentee ballot. In keeping with the season and depending on your political persuasion you may want to give the tumor a name such as Obamano or Romnesia.

Icemantoo

RichardB63's picture
RichardB63
Posts: 56
Joined: Oct 2012

Thanks, I did think of that and early voted Tuesday :-) I will probably name it a mixture of all of them :-)

NanoSecond's picture
NanoSecond
Posts: 613
Joined: Oct 2012

Hi Richard,

Try not to be too worried about your surgery. You really are in fine hands down at MD Anderson.

Just curious. Have they done a full body nuclear bone scan on you yet?

Max Power's picture
Max Power
Posts: 60
Joined: Sep 2012

You: Doc, will I be able to play the piano after surgery?
Doc: Sure, yes.
You: Great, because I was never able to play it before.

RichardB63's picture
RichardB63
Posts: 56
Joined: Oct 2012

I will surely ask him that ;-). I might add the harmonica and guitar to that ;-)

love_of_my_life
Posts: 28
Joined: Jul 2012

My wife had a full removal on August 23rd and has recovered 100%

First couple of days are a bit rough trying to balance pain killers. She was 60% within 10 days or so.

You and your family our in our prayers!

Tom and Holly

RichardB63's picture
RichardB63
Posts: 56
Joined: Oct 2012

That is such great news, Praying for you and your family...

Richard :-)

Bubbs21
Posts: 44
Joined: Jul 2012

Richard,

I haven't been on the board since I got my date, but I am right behind you with a partial laprascopic nephrectomy on Nov 7th for a 2 - 2.5cm tumour on the lower pole of my left kidney. I am 48 and live in the Ottawa area in Canada. Like most my tumour was found incidentally and I feel so fortunate to have found it early. If pathology is good, we will be saying we used to have cancer and be back to work before the holidays come.

Unfortuantely, we have had to put our bikes away for the winter, but I look forward to getting out on the VXT Honda in the spring.

Have a great weekend. Thinking of you.

Bubbs.

RichardB63's picture
RichardB63
Posts: 56
Joined: Oct 2012

Praying everything goes well, and that you are riding soon;-). When the weather permits...

Bubbs21
Posts: 44
Joined: Jul 2012

I will be thinking of you tomorrow and sending positive thoughts / energy. Good luck and Godspeed.

Bubbs

alice124's picture
alice124
Posts: 882
Joined: Mar 2012

We'll be thinking of you Richard! Stay strong and feel the many support coming from this Board--a circle of strength and a circle of fight!

ourfriendjohn's picture
ourfriendjohn
Posts: 72
Joined: Jun 2012

Richard and Bubbs,

All of us here know the fear and anxiety that you are both feeling. Know that you will both be in our thoughts and prayers this week. I have shared with others on the board that Is 26:3 is a nice short verse that you can mull over while waiting. "You will keep in perfect peace whose mind is stayed on you because he trust in you". It helped me.

Let us know when you are back in the saddle again. For me its a Specialized Crossroads.

John

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

You guys are well prepared and you know the drill. As far as the surgery goes, you won't remember a thing other than maybe being rolled into the O.R. Once its over you will wake up in the recovery area where they will start work on pain management, rest, and getting you on your way toward going home. Two things that can't be stressed enough IMO are walking and water. Walk as much and as often as you can and drink plenty of water, both are very beneficial to the recovery process. Soon all of this will be behind you and you can look forward to the next several decades of life's little twists and turns. You are in my thoughts and prayers.

Good luck and Godspeed,

Gary

RichardB63's picture
RichardB63
Posts: 56
Joined: Oct 2012

Thanks for the prayers, and everyone here is definitely in mine as well. Thanks for the info on water and walking, I am sure going to try to do my part ;-) Thanks everyone, Richard

Bubbs21
Posts: 44
Joined: Jul 2012

Yes....we are prepared and know the drill, due to the selfless sharing and support of Gary, Fox, Iceman, TW, Alice, Tom/Holly and others.

Thanks to all for the prayers, and everyone here is definitely an angel and deserving of having your own prayers answered.

Gary,
Thanks for the info on the 2W's - water and walking. I am ready to get this over with and move on.....

Have a good week everyone.

Bubbs21
Posts: 44
Joined: Jul 2012

Yes....we are prepared and know the drill, due to the selfless sharing and support of Gary, Fox, Iceman, TW, Alice, Tom/Holly and others.

Thanks to all for the prayers, and everyone here is definitely an angel and deserving of having your own prayers answered.

Gary,
Thanks for the info on the 2W's - water and walking. I am ready to get this over with and move on.....

Have a good week everyone.

RichardB63's picture
RichardB63
Posts: 56
Joined: Oct 2012

Prayers to you Bubbs.... we will be talking on here soon :-)

Richard the pillow also

RichardB63's picture
RichardB63
Posts: 56
Joined: Oct 2012

Thank you so much;-) I love the prayer ;-) Yes it will definitely be a crossroad . Richard

Raine22's picture
Raine22
Posts: 33
Joined: Jun 2012

Just to wish you luck and to let you know you will be in my prayers!!! You will be home recovering before you know it!

My Dr. is not Dr. Wood, but Dr. Wood is the chairperson of the clinical study I am in.

Have plenty of hard pillows to hold against your belly when you need to cough, bend - it helps tremendously to hold them close to you.

Good luck, Lorraine

DMike's picture
DMike
Posts: 241
Joined: Nov 2011

Richard and Bubbs,
Good luck this week! You'll do fine if you follow the advice of Gary, Fox, and Iceman. They helped me through it 11 months ago. Gary's 2 Ws - walking and water - are great advice.
Thinking of you, David

RichardB63's picture
RichardB63
Posts: 56
Joined: Oct 2012

Thanks for all of the good advice, this board is a Godsend.... A friend just told me about the pillow after you Lorraine. Water and walking also great advice...
Thanks everyone for all of the support and wisdom, my prayer's will definetly be with each and every one..

Thanks Richard

foxhd's picture
foxhd
Posts: 2066
Joined: Oct 2011

Good luck you guys! Your success is our success. I hope you tolerate this treatment so well that you wonder what the big deal is. Boldly go where you've never been before. Remember the side effects are temporary.

RichardB63's picture
RichardB63
Posts: 56
Joined: Oct 2012

This thread and others are very helpful, I printed the questions from the other thread for post op question. I believe they will be a big help.

Richard

Bubbs21
Posts: 44
Joined: Jul 2012

Well the deed is done. Got a room with a beautiful view and room service for a few days. Feeling good and fortunate.

Thanks to all for your support and advice that enabled yesterday to go by without any anxiety.

Cheers for now. I got some resting to do.

Bubbs

Moraboy
Posts: 7
Joined: Oct 2012

I'm a 49 year old male that was diagnosed on Aug. 15th, two days before classes were to begin at the university that I teach at. I must say it was a shock. Like many of the story I hear, mine RCC was discovered by a fluke. I had a cough and went to my GP, he did a chest xray, saw something he didn't like ordered a CT for the next day. Hey what did they find a 15cm x15cm mass where my right kidney used to be, oh the lung had a 3.5cm mass too. My lucky day. After a consult with a local urologist it was biopsy time both for the kidney mass and the lung mass, both came back positive for clear cell RCC stage 4. The next day it was to the oncologist that agreed we needed to do something and start it fast. She contacted MD Anderson and away we went to Houston for a consult and 2nd opinion. A full CT scan there reveled mets in my liver and lymp nodes as well. They agreed that the first thing they had to do was to try and slow down the lung mass and try to stop more mets from developing. The kidney will just have to wait a few more months before it can come out.

So now I'm on Votrient 800mg a day. I'm doing OK on it, very few side effects, except lose of taste, white and thinning hair and a face that has grown twice the size as it was before. I'm back teaching a few classes a week at the University, the fatigue and lack of breath is the worst. A scan is scheduled for the 19th of Nov. and a Onc. appointment on the Wednesday before Thanksgiving, lets hope those masses have shrunk.

I've enjoyed reading about each of you, it really helps to know others stories and how life can continue with RCC.

Steve

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

Steve, is "Moraboy" a wry piece of academic humour? (sorry, humor, for you guys?). It sounds to me as if you acted about as fast as one could and then got a plan into place double-quick too. Well done for all of that, especially since you seem to have suddenly acquired much more to think about than most people ever have to deal with!

Could you maybe fill out your profile just a bit more? What Fuhrman grade is your clear cell RCC; any signs of necrosis or sarcomatoid change? What do you teach? Any familial cancer history? Married, children?

I'll be wanting to compare notes with you soon - I reviewed my situation on the 'phone with my onc this afternoon and we decided I'll start on Votrient tomorrow. Like you, I had a swift change of fortune. After haematuria following a golf game last year I assumed I might have cancer somewhere in my urinary tract; had a number of unkind all-clears from initial investigations before a CT revealed stage 4 grade 4. Had a nephrectomy last Dec., immediate recurrence, another op, declared N(V)ED then another immediate recurrence + additional mets, hoped for a third op but was told it's too late now and went from 'cured' to totally incurable in a matter of a few weeks.

Still, bridges are there to be crossed when we come to them, aren't they? I'm off for a session of rowing before dinner but will doubtless talk to you again before long.

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