Gustavo Perez – Widely Metastatic Kidney Cancer

About Me

My name is Gustavo Perez, my friends call me Gus. I was born December 27, 1952 in Camaguey, Cuba. During the Bay of Pigs Invasion, April 17, 1961, my parents, my sister and I were supposed to board a passenger ship for Venezuela. The battle was seen from Havana, and with all our luggage in a cab we were getting ready to leave for the port when all hell broke loose and the cab left with our luggage, never to be seen again. Luckily we left two days later by ship and lived in Venezuela until we went to Miami in 1962.

I spent most of my life from age 16 onward on the road as a professional musician, percussionist/drummer. I played in many smokey nightclubs over the years and smoked myself for about 30 years. Luckily, if you want to call it that, I only smoked when I was working, during breaks. I really couldn’t stand the smell of cigarettes especially in the morning. I quit 8 years ago after I met my wife. I also quit drinking which I did quite heavily during my “on the road” days. During my days on the road as a musician I was also a heavy weight, weighing in at nearly 280. I maintain a weight of 195 these days.

In 1992, I went to work for a cruise line as part of a trio. During my time at sea I began the road to weight loss to my 195 pound frame I am today. I walked the deck of the ship during breaks and days at sea, morning and evening, around 6 miles a day and also while we were onshore. While onshore I walked at least 10 miles each time. I met my wife in 1995 while she was working as a nurse onboard a Norwegian cruise lines ship sailing from Vancouver to Alaska. Although we tried to avoid each other we eventually couldn’t resist each other and for the first time in my life I was ready to settle down. We left ships in 1997 and settled in Punta Gorda, Florida, later to Move to the Sarasota – Bradenton area. I became a Paramedic and now play drums for fun only. My wife is an ICU nurse. We were married in a beautiful beach wedding on Longboat Key June 29, 2002, and had the reception at a beach house we had rented. We had our honeymoon in Paris. We had good paying jobs, we had just bought a house, and all was wonderful.

My Diagnosis and Treatment

I started working for Manatee County EMS in 1999. I really enjoyed being a medic in the streets, had a wonderful partner from whom I learned a great deal. Jimmy was a medic in Vietnam and remained a medic for 30 years. Suddenly, in 2002 I decided I was going to move to a county further south to work. My home remained in Sarasota, but I drove 80 miles to work each way. My wife couldn’t understand why I would make such a move, the increase in pay wasn’t worth such a drive. It was the beginning of many irrational decisions I began to make.

In December 2002, I realized that I was doing stupid things at work, but I didn’t know why. Thank God I never injured a patient. It’s also amazing that I didn’t get killed driving to or from work. My partner would say, “what are you doing?”, when I was acting stupid. I could only reply, “I don’t know, but thank you for caring!”

My wife also began to notice subtle changes in my personality at that time. She thought I was just tired of being married after just a few short months. In January I was having problems with urinary incontinence, and I could not control the problem. I saw my primary care doctor early in February and she referred me to a Urologist. The personality changes became worse and my wife was at her wits end with me. She thought I was stressed out, so she planned a 4 day cruise so we could go scuba diving in Mexico. My urology appointment was the day before the cruise and my wife was at work. She called to ask if I had gone. I said, “I got lost going there, forgot my paperwork, and when I got there I forgot why I was there.” She was so upset she broke down in the ICU and one of her co-workers, another nurse, Dennis, asked what was wrong. She said, “Aliens stole my husband.” When she explained my behavior, he said I had to get to the emergency department now for a CT of my head. I drove there myself. My wife was in the scan with me and when she saw how large the tumor was, she fell apart.

We were given an initial diagnosis of a glioblastoma which my wife knew was pretty much a death sentence. With the help of another nurse she worked with, Fletcher, they picked a wonderful Neurosurgeon for me, Dr Andrew Fine, from Sarasota, who did cases in her hospital at the time. Dr. Fine was there in minutes. He wanted an MRI first, then discussed biopsy of the tumor. I was transferred to Sarasota Memorial Hospital the next morning for biopsy as Dr. Fine did most of his work there. He came in with a big smile to say, no biopsy, we’re taking the tumor out. The surgery he said would be three or four hours.

9 hours later as my wife paced and wore out the carpet in the waiting room with Dennis and his wife Nathalie, who was also an ICU nurse, the OR supervisor finally came to say it was over and I was doing well. Dr. Fine said it was a good thing we didn’t go diving as I would have had a seizure underwater due to the pressure and that would have been the end of me. The tumor measured 5cm by 4cm by 2cm. It had compressed my frontal lobe causing the personality changes and incontinence. It was attached to the main blood supply of the brain making it difficult to remove. Thank God for a brilliant surgeon who did not cut any off my frontal lobe. Two days later I was home.

The pathology report came back as clear cell neoplasm, which represents a clear cell meningioma unless metastases from kidney could be excluded. We were confused by the report but the specimen was sent to John Hopkins for further assessment. It came back as metastatic renal cell carcinoma. I had bone scans and full body CT. On the 18th of March, Dr Fine called me to say I had many lesions. I had a primary tumor in my left kidney measuring 7cm, a lesion on the liver, and 9 lung lesions.

I was sent to a local Oncologist who said it was too late to take my kidney out as I had so much metastasis it wouldn’t improve myh survival. He said I needed whole brain radiation and stated that my brain tumor was not completely removed, which it was. He said also I had a 10% chance of surviving but did refer me to Moffitt cancer Center in Tampa.

I then went to the Internet for help, where I found Steve Dunn’s Kidney cancer site. I found the information there so informative and it contributed to my survival. I scheduled a nephrectomy with the urologist that I originally missed the appointment with, Dr. Bino Rucker. I saw Dr. Mayer Fishman at Moffitt who works with Dr. Scott Antonia in the Genitourinary Cancer Department. He also confirmed that the kidney had to come out but suggested Phase II of the vaccine trial that was mentioned in Jim Ward’s story.

I had my laparoscopic nephrectomy on April 7th, 2003 and the tumor was personally delivered to Moffit’s lab by Roger, another nurse my wife works with. It’s nice to have a whole team of nurses on your side! Pathology of the kidney showed clear cell carcinoma, Stage IV, Grade I-II of IV, examined margins were free of malignancy. My tumor in the kidney was totally encapsulated. It’s amazing how cells spread to the brain and lungs and elsewhere…Strange cancer!

I kept in touch with the vaccine department at Moffitt to be sure my tumor was growing in the lab and vaccine was to become available. The head of the lab said it was doing well. I named it “Little Gus.” I asked her more questions and she stated that the tumor was fed and incubated for a few weeks before vaccine was made. I asked her what she fed it and she said, “anything it wants”!! Being Cuban, I said a diet of rice and beans would be nice!!

I quickly recovered from the craniotomy and laparoscopic nephrectomy and was doing quite well. Against the advice of the KIDNEY-ONC E-Mail List and my wife, I proceeded with whole brain radiation. My neurosurgeon felt it would be a wise thing to do in light of the size of the tumor and how messy surgery to remove it (I lost 5 units of blood) was. Other than nausea, fatigue and hair loss, I had developed heat and cold intolerance… messed up thermostat!!

Just to prove to myself that my brain was still working, I went to Key Largo to do a week course in Hyperbaric medicine..which I passed with flying colors. In August 2003, My doctor at Moffitt, Dr. Mayer Fishman, started me on the vaccine trial along with 6 weeks of low dose IL-2 at home, administered by my wife. This was my first experience with IL-2, I felt like crap! Looking back now, I think I had a harder time with the low dose than the high dose treatments. Side effects seem to linger longer. My first of 7 doses of my vaccine started August 21, 2003. In August, also, one morning I had a nasty cough and coughed up blood. I had a bronchoscopy which showed a large lymph node behind my carina which was causing an irritation. Lung nodules on CT scan at that time also showed growth. We celebrated our first wedding anniversary in Las Vegas with me being too ill and tired to do much of anything, especially handle the desert heat!

In December of 2003, my scans showed the lesions in my lungs were stable, but the mediastinal lymph node had grown, and now there was a pancreatic lesion as well as a possible bone met in my iliac crest. Dr. Fishman decided it was time to start high dose IL-2. In January 2004, I had a dual lumen port inserted. I started my first round of high dose IL-2 in January, and survived 8 doses before my platelet count dropped to 37. Other than rigors (severe shakes), nausea, vomiting, and my blood chemistry all out of whack, well it wasn’t so bad, and it took me about three days after I got home to recover enough to function properly. In the first week of February 2004, I had a second course of high dose IL-2, and again only tolerated 8 doses.

In March, I only managed to get 5 doses in at that time due to low blood pressure. I was started on a Dopamine drip for that and I went home the next day, terribly fluid overloaded and on Lasix and Potassium at home.

I went back to Moffitt on the 25th of March again and this time got 6 doses in before my blood pressure dropped. I ended up in ICU on a Neosynephrine drip which also fluid overloaded me. My platelets also dropped to the 30’s again. I asked not to go to ICU and asked them just to fluid bolus me and put me on dopamine again but the nurse refused. I knew what Neosynephrine would do to me with my already fluid overloaded state. I went home that Saturday but the doctor that discharged me didn’t prescribe anything for the fluid overload and when I got home my blood pressure continued to be elevated at 160/110 which is not my normal. My wife had one of the doctors she works with who has seen me in the past prescribe me Lasix and Potassium.

I had a break in April of 2004. My scans on the 26th of that month showed significant shrinkage of everything and one small lung lesion left as well as the mediastinal lymph node which showed signs of necrosis.

I saw Dr. Fishman on the 13th of May and with the results of the scans of the 26th he said he wanted to keep going with the IL-2, “Why give up on a good thing,” he stated. In the meantime I started a new job as a Hyperbaric tech. Much less stress than being a paramedic in the streets!!

In June, I tolerated 7 doses of high dose IL-2. Again platelets an issue. At my 6 month MRI follow up of the brain, well my neurosurgeon was amazed at the fact that my frontal lobe filled in where the tumor had been removed, he said it shouldn’t have done that. Guess I have a Very spongy brain!

In July, I managed 9 doses, my greatest number of treatments so far. In August I did another 5 and then my platelets pooped out again. My scans as of August 26, 2004, show clear lungs, healing pelvic met (apparently bone takes a long time to heal), liver, spleen, pancreas and remaining kidney all UNREMARKABLE!!!

My next scans are in December, what a Christmas gift it would be to be again NED (No Evidence of Disease). I will be getting scans every three months for at least a year then will graduate to every 6 months for awhile. Everyone who has been a part of my treatment has been amazed that I was able to beat the odds with the amount of metastases I had , but I did and I thank God each day for my life. I have not had time to worry, be angry or even think that I would not survive (my wife had enough of these issues to deal with without me adding to the problem!!).

I am working now, full time and feeling almost back to my pre-cancer self. Now I have to buy a home gym to start working out and get some muscle on this old body!! My wife also promised me a dog when I was well!

Still waiting for that DOG! I would not be here speaking to you today if it was not for my faith, my positive attitude, good friends, my family, my wife and Steve Dunn’s site. He himself is an inspiration and it was always my goal to be just like him… NED, alive and happy!

-Gustavo C. Perez, EMT-P, CHT

If you’d like to write, please E-Mail me at mailto:[email protected]

This CancerGuide Page By Gustavo Perez. © Gustavo Perez
Page Created: October 2, 2004, Last Updated: October 2, 2004