Immunotherapy Treatment Results

Obviously I've been putting off updating the blog. I wasn't sure how to convey the latest news to others, primarily because it took me some time to process it and figure out how I was going to let it affect me going forward.

The immunotherapy treatments didn't work. On March 1^st I had a new MRI that revealed a new tumor in my left buttock. The other four tumors were stable or slightly larger than they were three months ago. Of course I'm disappointed but not surprised. The success rate is only about five percent, but the slight chance of being cured made the two hospital stays and feeling poor for a few days seem worthwhile. C'est la vie.
So I have renal cancer and it is not going away. Dr. Harris still feels it is treatable with drugs. I recently started taking a low dose of Votrient tablets. If it does not start damaging my liver, I will continue to take it and increase the dosage. It basically shrinks blood vessels which can shrink or decrease the growth of the tumors. As a reward for taking it, my hair will likely turn white and skin will become more pale.
I do want to thank everyone for being so supportive to Sheryl and I. We are on countless prayer lists and appreciate the offers for and provided help, but we must all understand that sometimes it is not in God's plan for us to be cured from an affliction.
My primary goals are to selfishly continue to do the things that I enjoy, such as dining out (my appetite is exceptional), playing poker (I accept all challenges), working my businesses when I can, spending time with family and friends, hanging out with Sheryl, and preparing for the future. I will continue to fight the disease, but it will be difficult for me to participate in a treatment that significantly interferes with these activities.

Dealing with Moderate Pain

My most pressing struggle has been the pain in my left leg. It began in mid-January and is constant except when I lay down. A tumor in my spine is pressing on some nerves that extend down my leg. The pain is worst when I walk any distance, or walk at all after sitting for a long period of time (such as at a poker game). My oncologist (Dr. Harris) doesn't specialize in pain management, so he referred me the Emory Pain Clinic. I tried some nerve medication, but it or the hydrocodone had no effect. In an outpatient procedure, a doctor injected my back with an anti-inflammatory and numbing cocktail, but it didn't do anything either. Since then, the staff at the Emory Pain Clinic wont even return my calls anymore.
My father-in-law David brought me his scooter. I used it recently on a weekend trip to Tunica for a poker tournament. It was a great help because there would be no chance I could walk from the hotel room to the poker room.

Second Interleukin Treatment

I completed my second and final IL-2 treatment at Emory Hospital during the week of January the 30th.  This time I was able to receive my goal of five doses.  I felt horrible and was willing to take a sixth dose, but was secretly hoping against it.  Dr. Harris made the decision to end the treatment due to my low blood pressure and ceased urine output.  I gained over 20 pounds this time and felt like a blimp.  I recovered enough to come home Friday but still have a ways to go.  I do not consider myself to be particularly strong or tough or brave, so I am grateful that I my treatments and recoveries are relatively short in duration.  I'm not sure I could handle chemo treatments.
So now we wait to see if the IL-2 treatments worked.  In two or three weeks I will have another MRI which hopefully will show no new tumors and no new growth and shrinkage of the existing ones.  Please pray that it will be successful since it is the best opportunity for cure or remission.

First Interleukin Treatment

 

I received my first of two Interleukin treatments on Monday the 9th. The process started around 11 AM when a radiology doctor inserted a triple port catheter through my neck to a vein near my heart. It was quick and painless except for a sting sensation when the anesthetic was administered. I was then admitted to the Hospital and spent the rest of the day being tested constantly and getting saline and other solutions intravenously.
Evidently many people require sedatives leading up to procedures. I was offered a sedative before I left my room to the pre-op area when I had my kidney removed, before I was taken to the operating room, before I had a tumor cryoablated, and before my first interleukin treatment. I rarely worry about stuff and always declined. Some of the nurses commented on how calm I appeared and how low my blood pressure was for someone about to be operated on. My natural low blood pressure would turn out to be a problem during the interleukin treatment.
I received three IL-2 doses by intravenous drip, 10 PM Monday night, 6 AM Tuesday morning, and 2 PM Tuesday afternoon. I had to skip the 10PM dose because my blood pressure was too low (80's over 50's). This pretty much wore me out. I lost my appetite, became fatigued, swelled up, and had some nausea. Fortunately, my mom Dee and my wife Sheryl were there to help me in addition to the well trained doctor and nursing staff. Nurse Jana gave me two buttons which sum up mine and many others' feelings "Cancer Sucks" and "Stupid Cancer". Between each dose, blood is tested, waste is monitored, vitals are checked, drugs are taken, and solutions are administered. I also taught my mom to play Rummy.
I would have liked to receive more doses but my blood pressure was too low and more importantly, my creatinine level was too high. Basically, a creatinine blood test measures how well the kidneys are functioning. IL-2 negatively affects many organs including the kidney, so the blood tests are used to monitor what is happening. And because kidney cancer patients receiving IL-2 only have one kidney, it has to be vigorously monitored for fear of failure resulting in the need for dialysis. As soon as the creatinine level continued to move sharply higher, Dr. Harris cut me off of any more doses.
By Thursday morning I was miserable. They said I could go home if my creatinine and blood pressure levels were OK, but I basically said I was going home regardless. When my creatinine level was still a little high, they wanted me to stay. Unfortunately I was not pleasant and demanded the IV catheter be removed so I could leave. Dr. Harris relented and I was home mid-afternoon.
Over the last two days my swelling has decreased significantly, I have re-acquired my appetite, developed and controlled diarrhea, and gained some strength. Sheryl and I have watched several movies and ate out. I continue to struggle with back and leg soreness from the cryoablation and walking. Unfortunately, in two or three weeks I get to do it all again.

Suggestion for others that will have an IL-2 treatment: Be otherwise as healthy as possible before having the treatment. Having the tumor cryoablation the week before the treatment added extreme soreness and mobility problems in addition to the side effects of the treatment. I was also not quite over a cold which made me weaker before the IL-2 treatment started.

As most already know, I am a graduate of Georgia Tech ('88 and '90) and passionate about Tech winning and Georgia losing. I am often disappointed, but it is still fun to dream.

Thanks again for you thoughts, prayers, and support for Sheryl and mom. Please post a response and any suggestions (too long, boring, etc.) My goal is to keep friends and family informed and help for others with kidney cancer.

Scott 

Preparation for the Miracle Treatment

The week of January 2nd 2012 was all about preparing for the Interleukin 2 treatment at Emory Hospital.  On Tuesday, they took blood for analysis, performed an MRI, did a breathing test to measure my lung capacity, and a echo cardiogram/sonogram on my heart.  Everything went so well that I fooled myself into thinking it was going to be an easy week.
On Wednesday I had the large tumor in my left hip frozen.  They called it Cryoablatoin.  The operating room outpatient process included sending a line up through my femoral artery to cut off the blood supply to the tumor.  Then five probes were inserted through my back/hip to the tumor to inject the freezing material.  The result was a success but it really affected my ability to walk, stand up, lay down, and bend over because of the extreme soreness.
Thursday was brutal because of the cryo soreness and a pharmacologic Cardiac Stress Test.  Because I cannot walk on a treadmill, drugs were used to induce a higher heart rate.  The entire process took about four hours and included a CT scan and two PET scans of my heart with a lot of waiting time in between, and radioactive stuff injected into my blood stream so the imaging could see more.  At the critical test, a drug expanded all my blood vessels causing my blood pressure to drop rapidly, my heart to race, sweats, dizziness, and dry heaves.  Heaving while sore was very painful on top of feeling awful.  They did not find any problems, which agrees with my personal and family history.
Fortunately, nothing was found to delay or cancel the miracle treatment.

Here is a picture from my World Series of Poker Circuit Event tournament win at the Caesars Indiana Casino in 2005.  Poker is still my passion and it was awesome to win over $50,000.

Kidney Removal Surgery Follow-Up

Hello Everyone,

I am continuing to recover nicely from the removal of my right kidney.  It's is nice to be sleeping in the bed, being able to drive, and working a little.  Also, the effort of recovering from the surgery has taken my mind off of having "cancer".
On December 1st, the 19 staples along the incision were removed and replaced with strips of tape.  It's weird that my stomach above the incision feels sore but normal, below the incision is partially numb, and at my waistline is hypersensitive with a stinging sensation when touched.  I was told that it was due to the nerves cut during the surgery.  
I also had a follow-up meeting on the 8th with Dr. Harris, my kidney expert at Emory.  Unfortunately, I don't really like the way he communicates with me, but he seems to be the best doctor for my condition so I just have to resist the urge to switch.  During this visit, he revealed that the interleukin treatment (the only treatment with a small chance at remission or cure) does not perform well once the cancer moves to the bone, something he did not mention during the first visit.  I opted to have my kidney removed to prepare for the interleukin treatment, so I was floored to learn I may not qualify for it.  I hope to learn during a follow-up appointment on the 15th whether I can have the treatment or not.  If I do, the first dose may be the week after Christmas.


I wish everyone a merry Christmas and fun holiday season.

Scott

Below is my favorite picture.  It was taken on July 4th, 1982 after I ran the Peachtree Road Race.   It includes my dad before he became ill and died in 1983 from pancreatic cancer, as well as my brother Rick.  The hot girl is of course Sheryl, who robbed the cradle to keep me from becoming a player.  December 27th will be our 25th anniversary on top of the 6 years we dated.

Kidney Removal Surgery Update

It has been five days since I had my right kidney removed.  I came home on Saturday night, only 48 hours after the surgery, because I decided I would rather be uncomfortable at home instead of at the hospital.  I tried to lay in the bed but that was a huge mistake.  I was uncomfortable, could not move, and had to be helped up.  I quickly figured out sleeping (napping) in our recliner was the way to go.  My first bath in several days Sunday morning was a religious experience.
I do want to publicly thank my father-in-law David for staying at the house for the past week.  His taking care of of our animals, driving me around, and a hundred other big things has been invaluable.  Sheryl and my mom Dee have also been rocks.  I can't stress how valuable family and a spouse can be in a time of need.
I had an interesting disposable pump to carry around that sent pain medication into the surgery area.  I was told women also get it after a C-Section.  My pump was set to last about five days, so I pulled the two leads out and threw it away this afternoon.
I am determined to do as much as I typically do for as long as I can.  To start, I have been going out for lunch, but the doctors, and more importantly Sheryl, will not let me drive.  I also hosted the guys for our typical Monday night poker game.  They were very generous contributors this week, primarily due to my superior play.  The rest of the time I walk, nap, eat, watch TV, and work my latest puzzle.  Thursday our families will get together for Thanksgiving.
My next doctor appointment is Thursday, December 1st to remove the staples.  Unless something interesting happens before then, I will update the Blog after that visit.  Please become a member of this Blog and visit for updates when you can.

Scott