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New Member - 7 weeks Post Radical Nephrectomy

faithlou's picture
faithlou
Posts: 38
Joined: Jan 2013

7 weeks Post Radical Nephrectomy.  Trifecta mets. Moving through the process.  WOW.  Glad to find this forum.  Radiation and IL-2 ahead.   

rochetkak
Posts: 6
Joined: Jan 2013

Welcome, I am 2 weeks open radical nephrectomy b/c of a fast growing rare tumor 11cm large.

 

Gordon Charles's picture
Gordon Charles
Posts: 91
Joined: Jun 2012

Greetings Faithlou:  Now that you've paid your dues, you've joined a very exclusive club.  The members are here to help you.  I've gone the IL-2 route but wasn't one of the 15%.  However...  just a thought or two.....I had severe rigors...warm blankets and Demerol take care of that.... don't wait.... when the first shivver hits, hit your button.  Do not feel silly or weak... the staff is there to help you.  Depending on the institution, you may be able to have a family member or friend stay with you to help get you things.  In any case, there will always be someone here who's been where you are and able to help you see the path through.   As I've said several times.... attack this disease with your whole being and take NO prisoners!

alice124's picture
alice124
Posts: 877
Joined: Mar 2012

Faithlou,

How 'bout sharing more information? What  is your stage/grade? What type? Where are you located? You mention radiation and IL-2 ahead. Tell us more.

You've come to a great place with extemely supportive people who will try to help you through this. The more you share about your individual situation, the more help can be offered. And, if we don't know the answers, we can point you to places beyond here. 

Don't know if you've searched IL-2 in the search engine, but I know PhoenixRising has some great posts on her experiences; Toolman just completed IL-2 which unfortunately did not result in shrinkage; and my husband, One Putt (John), also had IL-2.

Anxiously awaiting to learn more.

 

 

faithlou's picture
faithlou
Posts: 38
Joined: Jan 2013

Alice,

This all happen so fast.  It seems like I am talking about someone else as I type this.  OK, I am a 58 year old female and here is my story....  It all started with a cough.  Yes a cough, Bronchitis.  In October I went to the clinic for a bad cough.  They took an xray of my lungs on a Friday evening.  Called me back on Monday morning saying they saw a spot on my lung and sent me to get CTs.  Had CT on Tuesday.  My doctor called me and said they saw a mass on my right kidney. More CT scans. Was sent to a local (Knoxville, TN) Urologist who sent me to Vanderbilt.  My sister keeps saying, I can't believe this, you just had a cough. (which was not related)  I had no symptoms.

So it ends up that I have hit the trifecta; large mass on kidney, several small nodes in both lungs and a mass in the pelvic area. RCC, clear cell.  Had my right kidney, mass and some other stuff removed and cleaned up on 12/03/12 at Vanderbilt.  Recovering from the surgery has gone well.  Looking at getting radiation to resolve pelvic mass bleeding issues soon, so I can get into power training for the IL-2.  Not real happy about the radiation thing but I don't think that I have many options.  I am adding another dr to the team and am seeing him tomorrow.  I have a specialist for just about every body part now.  LOL  Will be mining for more information, just another day in the process.

I have been reading the IL-2 posts and that is what got me to join the club.  I greatly appreciate all the information from people that are going through this.  Very helpful. 

Thanks for asking. 

Lou

foxhd's picture
foxhd
Posts: 2022
Joined: Oct 2011

Well Lou, hadn't you just been saying that there wasn't much going on and you wanted something to do?.......Well, you had been thinking that. You sound very well adjusted and have excellent coping abilities. I'd stand with you any day on a bet that you can handle all of this. Do lots of reading and be as informed as possible. So many here have found that there is so much more information out there than what was given to them by their Dr. I for one would not be answering this thread if I listened to the first 2 or 3 Drs' advice. Did I mention that you sound intelligent also? Lot's of decisions to make. You'll be making good ones. With all our support. Fox.

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

Yes, do tell - visiting or visited? From the shirt I guess you're inside!  Your mining skills might come in handy.

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

Its good that you aren't relying on those prison docs for treatment.

Seriously though, half the battle can be in having the right attitude and it appears you have that already mastered.  There are many treatments available today that weren't around even a few years ago and more are in the works.  In many cases RCC is being managed as a chronic disease while waiting for a full cure, so hang in there.

 Good Luck and Godspeed,

Gary

alice124's picture
alice124
Posts: 877
Joined: Mar 2012

Hi again Lou,

Sorry for the need to join this group but there's no better place to be when smacked with a diagnosis such as yours. My husband, one putt, also had a right nephrectomy and lung mets and a pelvic mass. He had developed a cough in recent months and had lost weight. He was diagnosed October 14, 2011, and right now he is on a trial of Nivolumab and Votrient. He started the trial on May 10, 2012, and has received 47% reduction in his tumor burden. He is treated at Hopkins.

He also underwent IL-2 prior to the current trial. I'm not going to lie; it was a tough treatment. But you are constantly surrounded by highly qualified doctors and nurses who know what to do whenever a multitude of side effects occur. Since it's the only treatment that CAN provide NED, it's hard not to give it a whirl if you have the opportunity.

Also, Tex posted recently on a toolbox kit for cancer patients that includes a great deal of reference material on CD's. It can simply be ordered on line free of charge.  I'm just now listening to them and it's good information laid out in a systematic manner. As I appreciate having them now, I would have loved to have had them when John was first diagnosed. 

Good luck to you, welcome, and keep us posted.

 

 

Limelife50's picture
Limelife50
Posts: 419
Joined: Nov 2011

I'M sorry but can you please explain that sweater you are wearing.Is that some sort of name tag and also what ae you laughing about

faithlou's picture
faithlou
Posts: 38
Joined: Jan 2013

Never a dull moment.  3/4 of my tumor expelled itself.  Rushed to ER to stop the hemorrhaging. Spent a couple of days in the hospital. Got blood.  Started radiation treatment.  Got great care!  All is well and I am at home tonight.

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