New Member - 7 weeks Post Radical Nephrectomy

Exclusive Club

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!

faithlou said:

So you want the gory details.....

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

Gory details

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

faithlou said:

So you want the gory details.....

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

Gory Details

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.

 

 

alice124 said:

Faithlou,
How 'bout sharing

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.

 

 

Hi Alice

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