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

Friday Nov 18, 2011

It's been a whirlwind past 2 weeks with seeing Dr. Klass at Kennestone, having a low dose of radiation of the lower back to hopefully reduce the tumor in the lower sacrum and help relieve the numbness and pain in his legs. We went to see Dr. Viraj Master at Emory who is a Urologist Oncologist. 2 days later we saw Dr. Wayne Harris at Emory who specializes in kidney cancer and is the only doctor who does a treatment call Interleukin II that could prayerfully cure the kidney cancer and keep it from spreading anywhere else. We will also be seeing Dr. Monsoon who is an Orthopedist Oncologist. These 3 doctor are all at Emory and an integral part of Scott's team.

Today is Friday Nov 18 and Scott had his right kidney removed yesterday. He has done AWESOME. He's already eating, walking the halls and his pain is more of a soreness. He doesn't even have the numbness in his legs and feet! Once he has recovered from the surgery they will start the treatments of the Interleukin II. This has been a very emotional couple of weeks as you can imagine but through it all I have felt a sense of comfort and peace. I know they say stage IV and I know Scott has a fight ahead of him but as my dad says if anyone can beat this Scott can and the way he has handled this news and the past two weeks is AMAZING!
I can't thank everyone enough for the calls, texts, offers to help, and PRAYERS! I know GOD will see us through this and Scott will be a cancer survivor.

Background and Discovery of my Cancer

In July 2011, I strained my back working on our house and moving furniture.  Mainly because I have no history of significant back problems, I did not think much about it and tried to take it easy.  A week or two later I developed numbness down parts of my legs, the outside of my feet, and my heels.
I went to my internal medicine doctor, Dr. Reznik, who recommended some basic exercises, not lift anything over ten pounds, and to come back in 6 weeks.  Nothing improved, I was walking funny and in pain so I went back in four weeks.  This time I was prescribed physical therapy and a mild pain killer.
The physical therapy focused on the likelihood of a pinched nerve, but after three sessions I quit because I was not improving and the therapy was painful.  At my request my doctor prescribed a stronger (but still mild) pain killer and for me to see an orthopedic doctor.
All this time I had no clue my problems were anything other than a back strain.
Dr. Dennis, the orthopedic doctor saw me walk and took an x-ray.  She immediately diagnosed my problem as a bulged degenerative disk, the lowest one, that was pinching a nerve.  Fortunately, she ordered an MRI to observe the nerve damage.  On Saturday October 29th, I had the MRI.  On Halloween day, Dr. Dennis called and told me the MRI revealed three tumors, one on my right kidney, one in my sacrum and lower spine, and one on my right hip bone.  The radiologist reported it was Renal Cell Carcinoma.  She advised for me to contact a oncologist and to come to her office and pick up the report and images from the MRI, and ended the conversation by praying with me.
Well it only took me 10 minutes to find and read the wikipedia entry for the disease to realize my condition is serious.
The oncologist, Dr. Klass at Kennestone Hospital immediately referred  me to Emory for consultation.  I met with Dr. Viraj Master and Dr. Wayne Harris.  They are part of the urology team that will treat me.  Unfortunately, this type of cancer does not respond to chemo or radiation, which is why it is so serious.  The standard treatment is to remove the affected kidney, try to treat my whole body with a high dose of Interluken II, and then several oral medications that work differently for each person.  The interluken actually has a cure rate of 5%, so that would be awesome if I could respond to it.
During this time, I had a low dose radiation treatment on the tumor in my sacrum area to try and reduce it so I can walk better, reduce the numbness, and slow or stop its growth.

Scott