Hello all, here is my story of HLRCC...

  Sept. 2016, found out my daughter that was living with us was pregnant, yay 1st grand baby on the way. Found out on that Friday daughter in law was pregnant as well WOOOOOO 2 grand babies on the way! My wife, my daughter, and I were living in Arkansas at the time but are from the Minnneapolis - St. Paul area and had moved away 25 years ago. Finding out about the grand babies, we all decided to move back to the Twin Cities so all the relatives can enjoy the babies The wife and I took a trip back north in October of 16 to scout out places to live. On the trip I get bad back pain that wouldn't go away. We get back to AR my doc shoots me with cortizone, 2 weeks later still have low back pain and now have developed upper back pain as well. Go back to doc, he schedules me for an ultra sound (I have family history of Aortic Anuerism). Tech doing the ultra sound says your doctor is going to want to follow up hmm ok.... Get scheduled for a CT scan the next day, done with that and tech again says your doc is going to have to talk with you hmmm why won't anyone tell me what is going on? Come to find out I have a cyst 30cm x 22cm x 23cm coming off of my left kidney, the cyst was literally bigger than a gallon milk jug! Local docs don't want anything to do with it and tell me i need to go to Little Rock or to St. Louis for appropriate care! Hearing this and knowing i was going to be moving back to the Twin Cities I get a hold of Mayo and they agree to take me on as a patient.

  December of 2016 move back to Twin Cities, January 13th 2017 go under the knife at Mayo, left sided radical Nephrectomy. They aspirated the cyst the took 5 liters of fluid out of it, they take the cyst, my left kidney, and left adrenal gland. A couple days in the hospital then back to home for recovery. All was going well.....

  February 9th, wake up in the middle of the night, need to go to the bathroom, as soon as I am done I get horrible lower abdominal pain so bad that i can't do anything but writhe in pain on the bathroom floor. Get ambulance ride to hospital number 1, pain scale 22 out of 10, CT scan shows a lot of air in my abdomen. Catch ambulance ride to hospital number 2, go to ICU pain level still high, medical staff pumping Dilaudid in to me as fast as I can get it. Get in to pre-op, have heart attack while waiting to go in for surgery, go in for surgery, turns out I have scar tissue from the nephrectomy that had wrapped around my small intestine and necrotized a 4 foot section of it! Done with all of that business, get back home again and start the healing process all over.

  Time goes by, go in for follow up CT January of 2018, now have multi-foci throughout abdomen, biopsy shows tubulocystic RCC. Doc places me on Sutent 50mg dose. 2 rounds of that and another CT. Sutent is working at shrinking the tumors, but the side effects are horrible. Nauseasness so bad I can't sleep, vomiting, diarrhea, skin changing color, and the llist goes on.

  Mid June of this year, I go out to Washington DC and get enrolled with the NIH/NCI, (I highly recommend if you have not already done so, contact the NIH and see if they will take you, so little is known about HLRCC/RCC.) Doc's at NIH say because the Sutent is working so well they don't want to take me off of it, and let's see what we can do about getting the side effects under control. So dosage is dropped to 37.5mg and side effects are still there, not nearly as bad as they were, but I am still contending with the diarrhea, GI issues, and the fatigue. I have not been able to work since the 2nd round of Sutent because the fatigue is so bad.

  At this point I just want to get the side effects under control so I can get back to a somewhat normal life. I am an EMT, and there is no way I can work with these side effects :( I have done a ton of research on HLRCC, tubulocystic tumors, and Sutent and am coming to terms with having to be on some sort of chemo the rest of my life because there is no cure for what we have. 

  And the adventure continues from here..........

 Thanks for listening, best wishes to all that have this disease.