April 2011: Jay Hyman

Featured and Written By:
Jay Hyman

My name is Jay Hyman, AKA Itsdaplumber on the KCA message board.

I wanted to tell people about my experiences having kidney cancer and the things that have helped me through the last six years.

In early February 2005, I experienced one small episode of a bloody urine that I mistook for a urinary tract infection. Being that it was only a one time thing, I didn't think anything of it.  At the end of February, I was out to eat with my family and another episode of blood in my urine made me realize that something serious was going on. I called a urologist who agreed to see me. Upon performing several tests, I was told that there was a large mass on my left kidney. This doctor had no compassion at all and shuffled us out of the room through a back door so we wouldn't upset the other patients in the waiting room. They need to make a course in patient/ doctor relations a requirement to get your degree. Anyway, a mass was detected in my lung and I was referred to Fox Chase Cancer Center in Montgomery County, PA.

Dr. Uzzo saw me right away and two days later I had a nephrectomy of my left kidney. Two months later, I was put on Sutent through a clinical study.  I have been on Sutent for 53 cycles and am am currently NED (no evidence of disease). I made it through this process with the help of God, my family and the power of positive thinking. 

It is so important that you keep a positive attitude because anything is possible. I own a plumbing company in Philadelphia, and am enjoying a good, healthy life. I wish I could meet the team at Phizer that created Sutent to thank them personally for saving my life. I'll continue offering support to anyone that needs positive energy in their lives to help them get through their struggles with RCC. 

Jay Hyman

April 2011: Allison Rodgers

Featured and Written By:
Allison Rodgers

Me before kidney cancer

Me and my daughter after surgery and Sutent

I live in Cincinnati, Ohio as I have most of my life. I have only been married once and have one amazing daughter, who is now 30 years old and working on her Master's Degree in Social Work. I have attached a before kidney cancer/Sutent picture and an after surgery/Sutent picture. In the bottom picture, I had been off Sutent I believe about 6 weeks or more.

My kidney cancer journey started on June 20th 2009 at the age of 50. I was a runner and did a really hot race down in TN, called the, "RC Cola Moon Pie 10 Miler." It was a miserable humid day, a hilly course, and I hadn't been feeling well for a while: fatigue, weight loss, and back pain. I attributed most of this to work and didn't worry about it. So, I did the race. It was 100 degrees when I crossed the finish line in the morning! I felt really bad after the race but hung out with my friends.

I had driven a friend and I had to drive home since she didn't know how to drive a stick shift. I was so sick I was afraid I was going to pass out while driving. I couldn't really eat or drink anything either. I got home late that night around 8 p.m. and went to bed. I woke up around 1 a.m. with bad heart palpitations and really feeling bad. So, I went to the ER and they said I was severely dehydrated (took five bags of fluid). A doctor decided I might have some kind of colitis that runners sometimes get so he ordered a CT scan. Two days later, I have a Urologist and an Oncologist in my hospital room and they said that I had a cancerous tumor on my right kidney. I was in shock and disbelief as I take care of myself. I eat healthy, mostly organic/vegetarian and workout. How can this be? I was only 50 and went to the doctor like once a year for a sinus infection. They then did a chest CT scan and brain MRI since RCC tends to go to either place. Both came back clear thankfully. I then had the difficult job of telling my one and only daughter about the cancer. It was very hard as we are very close, best friends. As expected, she did not take it well. 

The doctor scheduled surgery quickly and on July 2, 2009, I had a radical right nephrectomy with partial adrenal gland removal. Surgery was very painful and I was in the hospital about 8 days. I lost a lot of weight and was very scared. The Urologist said though to not worry, he got it all out. No problem. 

In August, my Urologist had me setup an appointment with the Oncologist. He waltzed in smiling with my pathology report and then proceeded to tell me that I was a stage 3a, grade 2 RCC and that my chance of recurrence was high. He said I needed to see his clinical trial nurse and walked out. I freaked out at about this time and had a panic attack again (my 1st one was at hospital when they told me it was cancerous). 

I went home and prayed, talked to family members. I didn't like the idea of being a guinea pig in a trial. I decided to get a second opinion, which led to a third opinion at OSU - James Cancer Center in Columbus, OH. I really trusted the third doctor and liked him, but couldn't see myself driving to Columbus constantly as I live in Cincinnati. So, he said the second doctor I had seen was good and I called to make my first oncology appointment.

The first week with this doctor was hell as they tried to run every test imaginable to see if I could do the Nexavar/Sutent study. I was there every day for about 8 hours each day. Blood taken, MRI's, ct scans, MUGA scans, mammogram (which showed a lump in my breast, thankfully turned out to be a cyst), etc. My creatinine levels were high so they took blood each day, hydrated me on IV fluids and then took blood again to see if they could do scans with contrast. It was a nerve-wracking week.

So, in the meantime, I felt like I had a nervous breakdown and had to be hospitalized for my nerves. I was put on an antidepressant, an anti-anxiety drug and a sleeping pill, which helped tremendously! I could barely eat or sleep and couldn't afford to lose anymore weight. (I weighed 99 lbs. after surgery).

I finally started the trial in September 2009. I made it five cycles, all of which were really hard on me. I got the standard mouth sores, hand/foot sores, high blood pressure, hair turned white then started falling out. I turned yellow the first cycle so I knew I was on Sutent. I had read the side effects and had opened a capsule and saw that it is orange/yellow powder inside. When they took me off, my platelets were down to 58k, my white blood cells and red blood cells were all low, and I was anemic, but NED!

I was glad to be off Sutent, but scared to be off of it all at the same time. But, life does go on. I started seeing a great Nephrologist too.  She has helped a great deal as she gives me advice about supplements and my diet to protect my lone kidney. She actually listens to me and spends time with me.

I use prayer and meditation to help me when I feel stressed, and I still take an antidepressant. I have a huge support system with my family, friends, and church community. People came over very often bringing food and prayers. I am truly blessed and all those months on the couch sick made me realize how blessed and fortunate I am. I took life and people for granted before. I no longer do that. Having cancer strengthened my faith and has made me closer to God. I used to be very negative and now have a more positive attitude. It took cancer for God to get my attention and I am thankful to have a second chance. I know that no matter what happens with my health, that I am never alone. God is with me and I have my support group.

I live each day as it comes now. I try not to think of the future at all. My scans/labs are now every 4.5 months instead of every 3 months because my Nephrologist is worried about the function of my one kidney.  I know all will be well though. I have changed my eating habits and stopped all my supplements that were probably affecting my numbers. My last scans in October 2010 showed a nodule in my left lung, but the Oncologist thinks it is just an infection so I did two rounds of antibiotics. I am praying that it will be gone on March 15th when I have my scans again (ab/pelvis/chest).  If it's still there, I will have to have a biopsy. I do get nervous when the scans are due, but I am staying positive!!

I am 52 now and looking forward to my two year "surga-versary" as I call it. I still have fatigue and some other slight side affects, but am progressing. The more time that passes, the better I know I will feel. I am really grateful for Facebook, for the Kidney Cancer Warriors and the RCC group as well. It is such a great support system!

The day after surgery with my sister on the left and my daughter on the right

Moon Pie Race Tenn 2009

The race where I got dehydrated, followed by a hospital visit and my kidney cancer diagnosis

 

My daughter Melinda and her fiance Mark

3 months after surgery and before Sutent was started

April 2011: Craig Frey

Featured and Written By:  Craig Frey

Craig and Cathy Frey

February 2011

Hello….My name is Craig Frey. I was born in 1950, and raised in Hopewell, Virginia. I was raised in the shadow of the Allied Chemical Plant where my father was Superintendent of Maintenance. In 1972, I moved to Newport News, Virginia to attend College where I met my wife and eventually retired from the Newport News Department of Social Services. I have two wonderful children, a son and daughter, and 5 wonderful grandchildren with a 6th on his way in May 2011.

My story begins on Christmas Eve 2008. My son had come home to spend Christmas with us, and my daughter and her husband were in Tennessee with his parents. The weather was mild that day and my wife and son had gone to finish up some last minute shopping for Christmas. I stayed home and did some “early spring” clean up in the yard while they were gone. My wife and I (and son when he is home) sing in the St. Andrew’s Episcopal Church Choir and always look forward to singing at the 10:30 pm concert before the candlelight service that brings in Christmas day at midnight. Singing in the Choir on Christmas Eve and on Easter Day are the two services in the Church I enjoy most.

Around 9:00 pm I decided to shower and get cleaned up from the yard work earlier and in preparation to go to Church. Once in the bathroom and ready for my shower, I urinated and saw nothing but blood and blood clots. It scared me a little; but I am not one to let something like this get to me. I wondered what was going on and decided to dismiss it until later. We had rehearsed for months to get ready for the concert and I wasn’t going to miss something I had looked forward to for so long. I felt fine and decided to just tuck it away in the back of my mind and deal with it later. I knew if I told my wife I would end up in the Emergency Room and miss singing in the Christmas Eve Service, plus it would probably ruin Christmas for everyone. I realized it was probably a major health problem. So…I showered, put on my suit, and off to Church we went. I thoroughly enjoyed the service; but wasn’t my jovial self as some people commented to me later. My only concern was that I would develop some sort of leak and have blood on my white robe as we stood on the outer perimeter of the congregation singing “Silent Night” with a candle in my hand; however, all went well. MERRY CHRISTMAS!

We got home around 12:30 am, watched a little of the Christmas service from the Vatican and I thought on my dilemma. I decided not to say anything that late at night and went to sleep hoping it would be gone in the morning. In the morning I still had blood in my urine; but decided to keep quiet as a trip to the ER would ruin Christmas Day for the family. I still felt fine with no symptoms except the blood. When everyone was up we exchanged gifts and had a great Christmas breakfast together. As both my Mother and my Mother-in-law were in Nursing Homes, the afternoon faire was to make Christmas visits to both of them and give them their gifts. My wife and I drove to Smithfield (about 20 minutes from Newport News) to visit my Mother first. We had a nice visit and while there I had to urinate. A visit to the restroom and blood again! I started feeling a little nauseous at that point. On the way home I told my wife I was really tired from the previous night and wanted to stay at home while she visited her Mother. I felt really bad because she had gone with me but I was afraid I was going a little downhill at this point. It was fine with my wife and I told her to tell her mother that I would come to see her later in the day. I was still denying I had a problem and that it would go away.

My wife left and I started feeling worse almost before she got to the end of the street. I decided that it was time to do something about the situation I was in. I tried to call her, but her cell phone rang on the dining room table. I had no choice but to wait until she came back home. I turned on the computer and typed my symptoms into a search engine on the Internet. After reading, my research had convinced me that I had kidney stones. As I had never had kidney stones before I had no Idea of what to expect as far as symptoms and pain. As soon as my wife got home I told her what had been happening with me and she told me to get into the car and we were going to the ER. We decided on Port Warwick ER (part of the Sentara Hospital system), a full scale ER without a hospital attached. Previous experience had told me it was quick, efficient and the staff had been nice. After the check in, preliminaries, and vitals, a young ER doctor came in to talk with me. I told him I thought I had kidney stones and he gave me a cup for a urine sample. I returned with what looked like thick cranberry juice. He ordered a CT scan and off I went to the hoop. After returning to the examining room, the young doctor came in with a look on his face that lead me to believe his entire family had just been lost in a car accident. He told me I had a large mass growing on my left kidney and that he was 99% sure it was cancer; my left kidney would have to be removed. It took my breath away for several moments, and I looked over at my wife who also seemed to have stopped breathing. When I looked back at the doctor he had that same doomed look on his face….I asked him if he was alright? He then asked me if I had understood what he had said, I acknowledged that I had understood but the last time I checked you could still live with one kidney! He agreed that that was true. By now my wife had come around and she asked him if he was alright. I guess the poor young doctor just didn’t expect the response he got from me. Of course I didn’t question him, but my wife immediately started to deny that it was cancer and questioned what made him so sure it was cancer. He was sure! 

I was transported to Hampton Sentara Careplex Hospital and admitted. I met my surgeon, Dr. Anthony Sibley (a wonderful man who saved my life and felt like a part of our family) who had to find another doctor to assist with the operation as his regular doctor was out of town for Christmas holiday. Eventually the surgery was scheduled for New Years Eve. During my time in the hospital and conversations with Dr. Sibley it seemed that the goal and most important thing was to remove the kidney in its sack intact so that no cells from the cancer went into other parts of my body. Dr. Sibley told us that Renal Cell Cancer is slow growing (that made us feel better about having to wait to have the surgery) and that the tumor in my kidney had probably been growing there for seven or eight years. During my week wait for the surgery I had to be catheterized, as clots would not allow the urine to pass freely. This was the only “pain” symptom I experienced….but boy was it a terrible thing until the catheter was in place along with bags of water that flushed out my bladder.

On New Year’s Eve the time had come for the surgery. Rhonda, our fairly new Assistant Priest showed up just in time as they were getting ready to wheel me down the hall to the OR. She asked if I wanted communion or healing…..I told her “heal me you fool!” We laughed and she prayed over me putting the healing oil on my forehead as I was rolled down the hall. Shortly after that all was a quick blur until I woke up in Intensive Care with lots of IVs and tubes and my dear Wife beside me. I didn’t know it at the time; but during the surgery the OR waiting room was filled with friends and family all praying for me, as well as many others who were not there. I am sure their prayers are why I am here today and doing so well. After a night in the Intensive Care Unit I was sent back to my room to recover. Dr. Sibley told me the surgery was a success and he had been able to remove my kidney, my adrenal gland and the sack intact, there was no sign of cancer cells on the margins. My kidney had been 5 ½ pounds and the size of a football! I don’t think I had heard him say this before; but my right kidney also had cancer, and I would have to have surgery to remove the cancer from it. The cancer was described like a teardrop hanging from my kidney. I would have to have laproscopic cryoablation; three small incisions and freeze the cancer cells. Now something else to worry about and to look forward to! This would have to wait until I healed from the first surgery.

When questioning the doctors about where the cancer came from, once they learned I was raised in Hopewell, VA, they almost all agree that it originated there. I have also been told it could have come from my mother (who never had cancer) when I was forming and could have been a gene that has been waiting to get started. Either way, it doesn’t much matter where it comes from; once you have it you have to live with it. I don’t spend time trying to figure out where or why I have cancer. I have better things to do with my time and my life than to worry about cancer. I also don’t let it get to me, life is too short as it is, and I am stronger than it is. I don’t like having cancer, I don’t like to be called a survivor, and I really don’t want to know much more about it than I already do. I just keep on getting on with life as well as I can. I am fortunate to have as little of a problem as I do and am thankful for research and drugs that keep me going. I work a part time retirement job, teach Yoga several nights every week, and raise my beagle puppy who is a hand full. I have a great wife, great children and lots of grandchildren to keep me busy and worried about. I have recognized that my having RCC is much harder on my wife than it has been on me. She worries about me all the time and tries to do everything she can to keep me healthy and happy. I am glad I have the cancer and not her. She is my “Bull Dog” when we go to the doctors.

In March 2009, I went to Sentara Hospital in Norfolk, VA, where Dr. Michael Fabrizio (Eastern Virginia Medical School) performed the laparoscopic cryoablation on an outpatient basis. I spent one night in the hospital and home the next morning. All went well and he told me he had frozen the “B-Jesus” out of the cancer cells, I was now cancer free! Once home I discovered that the doctor’s assistant had failed to put her drug number on the prescription for pain. They would not fill the prescription without the number and we would have to go back to Norfolk to get it since it was a narcotic drug. Since it meant a trip back to Norfolk, we recovered without the drugs!

Next step, an appointment with the Oncologist. I didn’t even know what an Oncologist was until then. You learn lots of new things and terms when you have cancer! My wife and I met with a doctor without much of a personality who didn’t answer many of our questions. Both he and Dr. Fabrizio had hinted on getting me into a drug trial for some drug named Sutent (however they sort of whispered it so quiet and fast that my poor wife was unable to write it down) but didn’t go into enough detail to really understand what this was all about. I thought I was cancer free….why was I seeing a cancer doctor and why were doctors talking about putting me on a drug? I was told that I would have CT scans every three months as due to my “young age” he was going to pursue the cancer very aggressively. So, in June I had a CT scan and a follow up appointment. When I met with “Dr. Personality” he informed me that he was so very disappointed, that the CT scan showed I had two tumors on my spine. He was disappointed! How about me? I felt like I had let him down….messed up his statistics or something! He also told me that if I ever was sick or unable to take fluids or urinate that his office was my home and I should come in immediately! I was then immediately referred to Sentara Careplex in Hampton to have 15 radiation treatments on the two tumors on my spine. I met with a really nice young doctor, Dr. Michael Miller, who told me he would “shape his beams” based on my CT scan and I would begin having radiation treatments every day for the next 15 days (except Saturday and Sunday). Amazing how it seems so important except on weekends!

Sometime during all of this process “Dr. Personality” decided that Sutent was the drug for me and arranged for me to get a drug that costs approximately $8000 every time it is filled. Thank you God for my health insurance! My co-pay was only $30 every time I had it filled. 50 mg tablets, one every day for 28 days and then 14 days off of the drug to rest. Don’t eat grapefruit or drink grapefruit juice while taking this drug……NO PROBLEM! I don’t like either! After a day of kayaking at a friend’s house my wife and I were offered a cold Fresca, I didn’t even know they still made Fresca. Boy did it hit the spot, I told my wife on the way home to pick some up the next time she was at the store. Meanwhile, I was experiencing my first side effects from the Sutent, quick trips to the bathroom, sensitivity in my hands and feet, and a very sore mouth….even ketchup burned when I ate it. After about a month I read the label on the Fresca can….CONCENTRATED GRAPEFRUIT JUICE! No wonder I couldn’t stay out of the bathroom.

At the end of 15 radiation treatments my CT report said that one tumor had shrunk to the point where they couldn’t see it anymore. The other one had shrunk considerably. Since they had described the sizes of the tumors in centimeters instead of inches I never really understood their size, except one is now almost gone and the other is somewhere the size of 1 inch or less. I have been told that I can’t have any more radiation and I can’t have surgery to remove them...so I am stuck with them…such is life!

After the radiation treatments and during the first course of Sutent, I develop flu like symptoms, uncontrollable chills, fever, and generally feeling lousy all over. My wife tells me to go to the doctor, “Dr. Personality”, since he told me his office was my home if I was ever sick. I know they won’t give antibiotics anymore and I know it would be a waste of time. I stick it out for several days planning on getting better. I don’t get better and I finally give into my wife and go to “my home” to see the doctor. He isn’t in and I see another Oncologist who evaluates me and chews me out for not coming in sooner and tells me you can’t mess around when you are on Sutent. He admits me to Hampton Sentara Careplex with an unknown infection. I end up with IVs and antibiotics for the next 5 days. I guess I learned my lesson the hard way! While in the hospital “Dr. Personality” visits me early one morning and tells me he only has a minute since he has to go to a conference and do a presentation. The next day he does the same right before my wife comes to be with me. She has questions and goes to the nurses’ station where and asks if he has a couple of minutes to answer some questions. He tells her “not really” and explains he is in a conference and is a presenter. The next day another doctor visits me from the practice and tells me and my wife we don’t have to stay with “Dr. Personality” that we could be seeing Dr. Mark Fleming who specializes in kidney cancer. Upon discharge we make the next appointment with Dr. Fleming. What a great guy, he answers all of our questions and begins at square one telling us all about the disease and things we should have known from the beginning. So…don’t ever stick with a doctor you don’t like or who isn’t giving you the service you feel you should receive…it is your life!

Since then….I have continued on the Sutent 50mg, 28 on/14 off. CT scans every 3 months that show no change. No change is good! The Sutent is working and continues to work. I continue to endure the side effects of the Sutent as the alternative is not real appealing to me. Enough energy to get through about half of the day, sore mouth, sore hands, sore feet, constipation, diarrhea, rashes on places you don’t want rashes, high blood pressure and taking medication for high blood pressure.

During my December 2010, Oncologist visit it is decided that after almost two years on the 50 mg Sutent it is too much for me as I am having too many side effects. It is decided to reduce to 37 ½ mg, 28on/14off. I should have less side effects and possible more energy. I just finished my first 28 days on the 37 ½ mg Sutent and feel that the side effects didn’t really kick in until around the middle of the 3rd week, yet not as bad as before. I still am going to bed around 8:00 pm every night, my “batteries are depleted “by then. Still I don’t get too far from the bathroom and find myself making emergency trips home to the bathroom. Hands, feet, mouth isn’t near as bad as before. I don’t know about the blood pressure as I know that won’t correct itself and I have to be on medication for it because of the Sutent.

I am now on a 3-month schedule of CT scan and Bone scans. I had an MRI in February and the results were better than the last time they took a close look at the tumors on my spine. However, a bulging disk, L5 S2 is causing pain down my legs. Tylenol should keep the edge off the pain unless it gets worse, then a visit to the neurosurgeon. I begin monthly shots in March of Xgeva to prevent bone breakage and in my case, spinal compression.

I refuse to let Malignant RCC get in my way. Nor will I give in to the side effects from the drug that keeps the cancer at bay! I believe in all the people who have been praying for me continually since December 2008. I believe all the prayer has pulled me through along this journey and has helped me to be in as good shape as I am. I will continue to enjoy my life, my work, teaching Yoga, kayaking, and riding my bike. I believe a cure is just around the corner. I continue to live life in a manner that makes me happy and fulfilled, and plan on continuing for many years to come. LIFE IS GOOD!


Craig is no longer with us here on earth as he won his battle with kidney cancer by the way he lived his life.  He will live on in the hearts of those who knew and loved him!

Craig's Family - October 2010

He and his wife Cathy, their son and spouse, daughter and spouse and 5 grandchildren