PAYING IT FORWARD: kidney cancer patients and their loved ones sharing personal journeys and information obtained along the way, providing support to those who will unfortunately follow our paths while also honoring those who came before us.

Chain of Love: reaching forward with one hand to those who paved the path before us, reaching behind us with the other hand to those who will unfortunately follow our journey.

We Share Because We Care : Warriors Share Their Personal Kidney Cancer Journey


These stories are for the copyright of this blog only. Please do not copy personal stories without asking permission from the individual who wrote the story. Thank You!




Thursday, April 1, 2010

April 2010: Pamela Wright Fiesler (PamYellowrose)



Featuring and Written By:
Pamela Wright Fiesler aka PamYellowrose


Hi, my name is Pam and this is my kidney cancer journey.



I've been married to my wonderful husband (Steve) for 30 years. We have one daughter (Casey) who is 28 and graduated from Vanderbilt Law School in May 09 and is currently working on her PhD at Georgia Tech. They have both been my greatest supporters during this journey. I also have had amazing support from some very wonderful friends and family. I couldn't imagine going through this without them. I also want to thank all of my new friends from the Kidney Cancer Warrior Support Group (Chat) and the KCA Forum. They have been a wonderful source of information and support (I consider them my on-line family).

It all began on June 18, 2008. I had turned 50 the previous December. Until that day, I thought I was perfectly healthy. I always had annual physicals, yearly mammograms, had my 1st bone density test & colonoscopy earlier that year (because you are supposed to when you turn 50). I thought I was doing everything right – never smoked, never drank alcohol. On that day in June, I noticed that I had blood in my urine and was planning on contacting my GP the next day to find out what was going on. However, late that evening I started having severe pain in my right side and was very nauseous and started vomiting. The pain kept getting worse and around 10 pm my husband took me to the ER. The doctor in the ER sent me for a CT of my abdomen thinking I probably had a kidney stone. Instead, a mass on my right kidney was discovered. I was admitted to the hospital and the next day scheduled for more testing that included an MRI of my abdomen. The urologist told me he was pretty certain that the mass was cancer and scheduled me for a Right Radical Nephrectomy for the following Monday. I was just numb when he said the words CANCER – not me, he can’t be talking about me! But he was and, as Paul Harvey said, “Here’s the Rest of the Story.”

On June 23rd, I had the surgery which went great. Pathology Report was
  • Tumor size 6.7 x 6 x 2.5 cm
  • Renal Cell Carcinoma, clear cell type, Fuhrman grade 2
  • Tumor limited to kidney
  • Ureteral and vascular surgical margins negative for malignancy
  • Pathological Staging: pT2, pNX, pMX
My Urologist Surgeon was confident that the tumor was encapsulated and that he had gotten it all. He did suggest a follow-up in a few weeks with an oncologist just to be on the safe side. My recovery went very well. I was in the hospital for 3 ½ days and only had to use pain medicine for a couple of days.

About a month after my surgery, I met with my oncologist for the 1st time. He, too, thought I had a good chance (85%) of not having any additional problems. I thought this is great - my surgery and recovery went very smoothly, and now I had an 85% chance that I would not have any more problems - life is good. To be on the safe side, he scheduled me for a Chest CT Scan and a Whole Body Bone scan for the following week. The Bone Scan was negative, but the Chest CT Scan showed very tiny nodules in both lungs that could be anything. My oncologist decided to have scans taken again in about 3 months to see if there was any change.

The scans in October 2008 showed the nodules in both lungs had increased in size and number. Additionally, the radiologist noted something suspicious looking in the kidney bed area. I was then scheduled for a biopsy that confirmed metastatic renal cell carcinoma. I guess that was the turning point. I knew then I really had a battle ahead of me. However, I was and still am determined to fight with everything I have and some.

After talking over options with my oncologist, I chose to go on a Phase III clinical trial “Sutent vs. Pazopanib”. I started seeing a different oncologist (in the same practice) who was conducting the Clinical Trial. I was randomized to the Sutent which I started taking on 11-24-08. I had great results with Sutent - over 50% shrinkage! The side effects were not fun – but as long as it was working – great. Scans in Oct 09 showed an increase in size and number of pulmonary metastases as well as progression of the tumor in the kidney bed area which suggested Sutent had stopped working and I was released from that trial.

My oncologist then suggested another Phase III Clinical Trial (Axitinib vs. Nexavar). I really think that doing ClinicalTrials, if possible, is one of the ways I can contribute to the research of new and better treatments for Kidney Cancer. This time I was randomized to the Study drug “Axitinib” which I began taking on 11-02-09. I had scans six weeks later on 12-14-09. There was again increase in size and number of lung mets and an increase in the size of the kidney bed tumor. Additionally, there were also multiple ring-enhancing liver lesions (which were new compared to previous CT Scans). These results suggested that Axitinib was not working so once again I was released from the Clinical Trial.

On 12-24-09, I started taking Afinitor. My oncologist is not an RCC Oncologist so I thought it was time to see one. I knew I would have scans in approximately 8-9 weeks for follow-up on how Afinitor was working. My local oncologist set up a referral with an RCC Oncologist at Duke Cancer Center for the week following my scheduled CT Scans which were scheduled for 2-23-10. I had no side effects with this drug so I was really praying it was working. Unfortunately, the scans on 2-23-10 showed a slight increase in size and number of mets in both lungs, kidney bed area & liver.

On 3-1-10, I traveled from Atlanta to the Duke Cancer Center to see an RCC Oncologist. My doctor went over all my records and CT Scan results with me. He said that after reviewing my scans from December (that were read as having represented disease progression) he was unclear if that truly represented disease progression or potentially response to therapy. He was concerned that perhaps doctors are not giving drugs enough time to actually show whether or not they could actually be working. After going over several different options, we both decided since I was feeling so good, having no side effects from Afinitor, and there was only slight progression, I should stay on the Afinitor for another 8 weeks to give the Afinitor more time to work, if it is going to work. I will have scans again the middle of April to find out for sure. If the Afinitor is actually working – that will be great. If it isn’t, I will travel back to Duke to decide on the next step of this journey.

This is my story thus far – I’m keeping a positive attitude and will battle hard every step of the way on this journey that I didn’t choose. God has been holding my hand during each step and I have placed it in His hands to help guide my doctor’s in treating me.

I think finding out that I had cancer has really made me aware of just how much for which I have to be thankful. I know that sounds odd but I don't take things for granted like I did in the past. I have God on my side, a wonderful family and great friends and I look at each day as a gift - I'm hoping to have many more of those gifts!

I’m wishing for all of the warriors and their loved ones that one day this war will have a victorious outcome with the discovery of a drug that will once and for all destroy this thing called “CANCER”.



Written By:  Pamela Wright Fiesler

Pam AKA in chat PamYellowrose and YellowRose on KCA forums


Thanks Pam for sharing your story with all of us. You are truly an inspiration
to so many of us. Your positive attitude and compassion are a blessing!




Pam is no longer with us here on earth.  She won her battle against kidney cancer and will live on in the hearts of those who knew and loved her!

Friday, February 26, 2010

March 2010: Jim Gurney (rollersk8ter)

Featuring and Written By: 
Jim Gurney (rollersk8ter)






I started smoking cigarettes at the age of 14. By age 18, I was smoking 2 packs a day. After high school, I worked a few years at an electronic company where I worked daily with an electronic cleaning chemical called trichloroethylene. Very little safety precautions were used back then, no gloves, no respirator, no goggles. I worked 4 years in the US Navy as a fire control technician. I worked on the ship’s computer anti-air guided missiles, specifically working on radar guidance and computer systems. In 1983 during a “leave” home my 1st born son, James Jeremy was conceived. I left the Navy in the summer of 1983 and had numerous jobs for a few years - installing roofing, siding and then working with a framer building houses, even did bartending for a period. I finally got my dream job, working for a large computer company first in manufacturing, as a computer operator, then finally working in computer security. When my daughter, Courtney, was born, I wanted to quite smoking to show my children that adults don’t need to smoke to be adults. I quit before she turned a year old. I haven’t wanted to return to that habit since. My daughter, 19, has never smoked cigarettes to my knowledge. My son, 26, smokes like I used to smoke. I smoked for about 18-20 years before quitting.


Around 2003 or so, I started really concentrating on getting in shape, health wise. I would walk 1 ¼ miles at least 5 days a week, other days I would roller-skate up to 3 hours. I switched over to only eat whole wheat foods, no bleached/bromated/enriched bread, no white pasta, no white rice, no white potatoes; I stayed away from high sugar foods and deserts. I was down to 220 lbs (I am 6’ 1”) and feeling great. I had an annual physical every year, including blood tests, chest x-rays, etc. One Sunday in October 2007, I was shocked and scared to see cranberry colored urine coming out of my body. I saw my general physician (GP) on that following Monday; he told me it could be an infection, kidney stones or cancer. After Urine tests showed so much blood that they could not test for an infection, they ordered a CT-scan which found a tumor in my left kidney. I was referred to a Urology surgeon.


In Nov 20007, I had a laparoscopic radical nephrectomy (left kidney and adrenal gland removal). Pathology report was a 5.5 cm clear cell, T1b, Fuhrman grade 3, Renal Cell Cancer (rcc). Once removed, the Urologist told me it appeared to be contained to the kidney (“got it all”); follow up was chest x-ray every 3 months for 1st yr, every 4 months for 2nd then every 6 months for the remainder of 5 yrs. He stated to me that I had a 10% chance to have cancer again some time in my life, less than 5% to have it return to my remaining kidney. Neither the Urologist nor GP ever mentioned seeing an oncologist.


March 2009, during my routine 4th x-ray, they found an isolated 2.5 cm tumor in my left lung, bottom back, near what used to be the kidney bed. CT-Scans, and bone scans were ordered by my Urologist and I was then referred to a lung surgeon. Lung Surgeon wanted to ensure it was rcc and not lung cancer, stating it would be a different operation (wedge resection for rcc vs removal of node for lung cancer) depending on what it was. Metastatic Renal Cell Cancer (mrcc) was confirmed by biopsy.


After removal of the lung tumor (wedge resection), I really started thinking I should be seeing a cancer doctor (oncologist). I asked the Surgeon his thoughts of me seeing an oncologist. He referred me to a general oncologist, whom I have always liked. She ordered PET Scan and a brain MRI. At that time I was also complaining of occasional clamming/sweating and lightheaded events. All tests showed no visible evidence of disease (NVED). The Oncologist told my wife and me, my life would be shorter than we had previously thought; she was concerned on the quickness (16 months) of the renal cell cancer metastasizing. She presented my case to a group of oncologists (a tumor council she called it) and they all agreed 100%, I should go on the targeted chemotherapy drug called Sutent. She told me my white blood count (wbc) and red blood count (rbc) was low and she would recommend 25mg 4 wks on, 2 wks off. The schedule has changed over the months but not the dose, currently (1st quarter 2010) I am on 25 mg 2 wks on, 1 wk off.


So here I am 9 months later still on Sutent and my oncologist wanted to know my thoughts on going off Sutent and going into ”observation mode”. My initial feelings were “What are you crazy?” Sutent has been keeping me NVED. She stated she wasn’t stating I had to stop Sutent, but just wanted to see how I felt about it. This has been racking my brain since she mentioned it 3 wks ago. I went back to one video found on the Kidney Cancer Association website from Feb. 2009, where Dr Wood from Anderson Cancer Center talks about adjuvant therapy (treatment to prevent reoccurrence.) He stated “Effective adjuvant therapy for RCC doesn’t exist in the year 2009” and “Drugs that have shown efficacy in the metastatic setting time and time and time and time again have shown no benefit in the adjuvant setting”.


At this time, I don’t know which fork in the road I am going to take. I know it’s one of those questions to which there is no definite answer. Did the Sutent keep a bunch of non-visible micro cancer cells in my lung from enlarging this past 9 months or maybe kill them off? If I stop the Sutent, will metastatic rcc cells create blood vessels and quickly start growing? Are there similar cancer cells somewhere else in my body and the Sutent has been keeping them at bay? If I stay on Sutent, will it damage my heart or other parts of my body? Long term use/damage from Sutent can’t be known, it has only been FDA approved since Jan. 2006. My quality of life has been affected with Sutent side effects. It has affected my blood pressure and I have been taking 2 bp medicines daily. It has also caused reflux for which I take anti-acid medicine daily. I suffer with diarrhea, acid reflux, insomnia, anxiety, “sore feet and back” which keep me from walking and standing for long periods. I am leaning towards going into “observation mode”, but only if I can get a doctor and insurance company to agree to upper/lower/pelvic scan every 3 or 4 months for at least the 1st 12 months.


I am going to Duke Medical Hospital 3/12/2010 to do exactly what I have recommended to new rcc patients and caregivers for the last 9 months. I am going to see an oncologist that specializes in urological cancers to get their opinion. Something I should have done almost a year ago, if not over 2 yrs ago. Both times, I was in so much of a hurry to have this cancer surgically removed from my body. From all the expert opinions I have seen and read, maybe I should have gotten 2nd and 3rd opinions on both occurrences. Originally, maybe I should have seen if partial nephrectomy was a possibility, so I would still have a 2nd kidney and adrenal gland. Maybe I should have tried Sutent before I had the lung surgery to see if it would shrink the tumor and show that it works in my body. So many “what if’s”, but I have to promise myself there is no more looking back……just live life to it’s fullest, let everyone close to me know how much I love them, make a decision and live with whatever happens. I now have a 2 yr old granddaughter and I want to be here on earth for many more years.


Written By:  Jim Gurney(rollrsk8ter)

Thank you Jim for sharing your story!  I know it will help someone in the future!  You were so kind to be the first KCW featured!