Kidney cancer patients: Let's connect and introduce yourself

Hi all,
There is now a support group dedicated to Kidney Cancer on Mayo Clinic Connect. See here:
- Kidney Cancer Support Group https://connect.mayoclinic.org/group/kidney-cancer/

Connect with others like you for support, practical information, and answers to your questions about kidney cancer (renal cell carcinoma). Follow the group to be notified when new posts are made.

cc: @lauragarrod @bomed @nang @thewife @sally0526 @collegeprof @pcondon @cindysummit @hj83 @koke @emily29. @bomed @b1375911 @racing212 @lkhanson @pml @azkidney57 @w5wiggi @paulinlouisiana @mb4414 @pamcaponio @tenniswood @mrodriguezc @dougr19 @2ndjourney @lbrockme @drmarci @buckeyeveteran @podrunner1 @dwitthuhn66 @am1974 @leeb123 @2ndjourney @doublecancer @twobeb87 @dustyeubie @olive60oil @surbhi1 @cindyc @hj83 @douglasfeb15 @lkhanson @momsanurse @mb4414

Pull up a chair and introduce yourself if you haven't already.

Thank you

Welcome, @dwitthuhn66. I encourage you to start a new discussion in the Kidney Cancer support group here: https://connect.mayoclinic.org/group/kidney-cancer/

I suggest a title like "Robotic Radical Nephrectomy: What can I expect?" or something similar.

I had robotic assisted partial nephrectomy in January.
Bad pathology but successful surgery and back to work in 3 weeks!

Quite a few of you have connected with @lbrockme in the Kidney Cancer support group. You may wish to check out today's member spotlight and get an inside look at what and who inspires Lynne Marie and why road trips and ice cream are important to her.

– Encouraging hope: Meet @lbrockme https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/encouraging-hope-meet-lbrockme/

Follow the About Connect blog to get updates when new Member Spotlights are published: https://connect.mayoclinic.org/page/about-connect/

I know that the fight against cancer is a long, tedious, frustrating endeavor, but sometimes the fight is won. It is so very important to continue the fight and to be very, very stubborn in fighting an enemy that you can't see, can't grab hold of, and can't always see progress. The lines of battle are hidden, and you have very little to defeat an enemy whose strengths are stealth, biological destruction, and physical terrorism. Sometimes it seems that the battle is overwhelming and you can't win, so why continue the fight?
Well, today I had a follow-up with my Oncologist at Cleveland Clinic, and he confirmed that the MRI and CT scans I took on Friday no longer show any cancer. This is after almost 7 years of the fight and numerous side battles that only helped the enemy.
I count 20 June, 2017 as my "cancer day" when I began the fight with surgery to remove my left kidney which had level 4 cancer. It was a full cut (not computer-aided) which was the first step down the long road of redemption, and the surgeon made an error which had fluid seeping into my abdomen, which called for weekly "draining" of the fluid through a tube inserted into me, and draining into what looked like the old milk bottles. When they couldn't stop the drain of "kile" into my abdomen and the numerous attempts failed, going on a liquid diet infused into me every night for 5 months was finally able to stop the"leak".
Then began the actual fight with Opdivo and Cabometryx. After following the regimen for three years, doctors wanted to terminate the treatment, as most patients have some problems (diarrhea, constipation, skin issues, etc), but I saw that the cancer was now in a holding pattern after moving to my lungs, and then to my spleen and pancreas. The doctor agreed to keep me on the same meds as it seemed to be working (the hard part was marking each three month time between the MRI/CT Scans), the only real marker that told if the cancer was growing or shrinking.
The 90 day tests showed that the cancer continued to shrink every three months, and only two spots on my spleen remained, and the lungs and pancreas were clear of previous spots. The test Friday showed no spots, and the doctor told me today that (as of right now) I am "cancer-free".
My wife said that was "Great News". The doctor corrected her by calling it "Great News". I concur. We are going to continue the treatment to ensure that what we think has happened, has actually happened.
Sorry for a long story, but I wanted to remind others that if we refuse to fold our cards, and fight the good fight, that with the help of good medical assistance, a Loving wife or husband, and friends who support you with prayer and positive information, the fight can be won. I am about to turn 75 (not a kid), and spent most of my life in the Army, so my body has had it's challenges, but I look forward to continuing down the road to recovery, as cancer is like rust, and "Rust never Sleeps".
Stay Tough, Fight the Fight, and Never, Never Give Up... I am celebrating my first day since being declared "cancer free" (but never take anything for granted, and never think that the cancer is really gone).
Larry

@buckeyeveteran, Larry! Your story is encouraging and gives hope. I really appreciate you taking the time to share the 7 year journey. Thank goodness for your stubbornness and persistence. The journey is not easier.

I look forward to tapping you on the shoulder (vitually) when a member joins with a new diagnosis of kidney cancer. Enjoy the many days to come.

Thank you for the kind words. I am stubborn and was convinced that that stubbornness would get me through the fight with cancer. My wife of 44yrs and some friends who offered prayers provided the support I needed. There is a lot of power in prayer.

Larry

My 17year old has RCC its very rare the one he has you have to have SICKLE CELL TRAIT in order to get the RCC he has…February 5 he had a pain in his side ..Found out he had RCC and it had done spread to his LUNGS , LIVER, February 13 on his 17th Birthday got his kidney removed February 25 started chemotherapy…had a. Bad reaction to it..so they stopped it.went back the next week with him admitted in the hospital to do treatment plan…now it has spread to his bones and now also muscle…please keep him in your PRAYERS…he’s so strong and too young to be going through this with his whole life ahead of him

Hi, just wondering what signs (big or small) people had that prompted them to get checked out and then discover the cancer. Did anyone’s food taste weird? Thanks and sending healing thoughts.