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


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Monday, May 31, 2010

May 2010: Bernadette Saco


Featuring and Written By: Bernadette Saco




Hi! My name is Bernadette Saco and this is my story of my journey with Kidney Cancer. I believe that God has given me an opportunity to inspire others and to help anyone that I can. I hope in reading my story that you will believe that there is such hope and that miracles do happen.


I was born and raised in New Jersey and come from a loving family of 2 brothers and 3 sisters. My mother and father are both deceased and living in Heaven. I went to college and graduate school in Washington, DC. I have lived and worked in New York City for many years. I’ve worked the past 20 years for a very large law firm downtown and manage 80 employees. I have always led a very active life and been in excellent health. I try to work out at least 3 times a week and also walk as much as I can. I am so blessed to have a wonderful family and many wonderful friends who have supported me for the last 5 years of my journey.

In September 2005, I was diagnosed with Papillary RCC type 2. I never had any side effects and found out accidentally when having a stomach sonogram, which showed that the kidney lymph nodes were enlarged. A cat scan revealed cancer in my right kidney that metastasized to the lungs, liver and bones. I had a lung biopsy by Dr. Dana Zappetti at Cornell, and a kidney biopsy by Dr. Robert Motzer of Sloan Kettering. Both confirmed that the cancer was Papillary RCC. Dr. Motzer informed me that surgery, radiation and chemotherapy were not suitable options for me. He did not have any trials that would be suitable for Papillary. He referred me to Dr. David Wolf at Cornell who was able to give me Nexavar in his office before it was FDA approved. When I met Dr. Wolf, I knew that he would be the best doctor for me. He told me that with his skill, my attitude and the help of the man upstairs that we would do well.

And so my journey would begin. I was on Nexavar for over 1 year. Some of the side effects were loss of hair, very bad hand and foot syndrome, nausea, diarrhea, and loss of appetite. Some of the medications I took were Kytril for nausea, Imodium for diarrhea, and Arthrotec 75 for the foot pain. The most upsetting side effect for me was losing my hair. My solution…I bought 2 beautiful wigs and continued to look and feel good.

After Nexavar stopped working, I went on Sutent. That only lasted 6 months. I had terrible feet problems where I could not walk without taking medication. I took Arthrotec 75 which did help me with the pain and Tetracaine/Lidocaine creams to numb the feet. After enduring the treatment for 6 months I found that it did not really help me and only made me sick.

My next treatment was Avastin with Interferon. However, before I would begin that round of treatment, I decided to take a spiritual pilgrimage to Lourdes, France with several of my close friends. What better place to find a miracle then the healing bath waters of Lourdes? The story of Lourdes is that the Blessed Virgin Mary appeared to a young girl named Bernadette and told her that she wanted to have a church and shrine built there at that very spot. It is now a beautiful place whereby the sick from all over the world go to visit her shrine and sit in the bath waters to get healed. What an amazing experience; I truly believe that I received my miracle at Lourdes.


After my amazing trip, I returned home to begin my treatment of Avastin with Interferon, which worked for me for over 2 years. I went every other week to my Doctor’s office for Avastin infusion. I gave myself injections of interferon 3 times a week. I never had many side effects from the Avastin other than nose and gum bleeds…but I used biotene tooth gel and mouthwash and Ayer nasal gel for the nose bleeds. The interferon side effects were more difficult. I had flu-like symptoms, extreme fatigue where you could not get out of bed, nausea and vomiting. We lowered the dose from 3 mil units 3 times a day to 1 mil units and that really helped. I was able to tolerate it better.

During that time, I experienced extreme pain in my left hip bone. It seemed that the cancer fractured the hip and I had to have a hip replacement in October, 2007. I went to Dr. John Healey at Sloan Kettering who did a terrific job of giving me a new hip and froze the rest of the cancer that could not be removed. I had to go off the Avastin for over 2 weeks before they could do the surgery since bleeding complications would be a problem. I now have a new hip and am doing really well. I was even dancing on New Year’s Eve and have the pictures to prove it! While I was in the hospital, all my NY friends would stay with me and feed me breakfast, lunch and dinner since we all know that hospital food is pretty bad. I was out of work for only 2 months and went back the first week in December.

In August, 2009, I found out that the Avastin/Interferon had stopped working. Next round … Torisel infusions every week for 6 months. This treatment was the best for me since the side effects were more tolerable and easily managed. At first I had mouth sores which I took care of with Gel Clair rinse 3 times a day, occasional nausea, headache and fatigue. I also experienced a terrible taste in my mouth and could not eat certain foods. My doctor told me to get lemon candies and they really helped my taste buds. The only negative to this treatment is that you have to get an infusion every week and this was a hardship on the veins. This treatment only worked for 6 months.

In March 30, 2010, I began a treatment of Avastin / Afinitor 10mg. After 1 week the Afinitor side effects were extreme nausea, diarrhea, fever and chills. I was treated by my doctor for dehydration and was told to stop the Afinitor until I felt better. I will be taking it every other day to see if that helps and if not he will lower the dose to 5 mg.

Throughout this whole journey of over 5 years I have continued to work full-time. I believe that working keeps me alive and fit; it forces me to get up, get dressed and forget that I have cancer. I continue to live my life to the fullest as if nothing has changed.

I have to thank my forum friends from the KCA (Kidney Cancer Association - http://www.kidneycancer.com/) for their continued support. I do not know what I would do without them. I have learned so much from everyone’s experiences and continue to get such strength from them. They have inspired me and continue to give me hope for the future. I have also met so many kidney cancer warriors and their families through cancer support groups and organizations. They have become my friends and I have the utmost admiration for them.

Throughout this whole journey, I feel so blessed that I am here, alive and enjoying my life. I wake up every day and thank God I am seeing another beautiful day. I look at things differently now and appreciate all that I have. I am so blessed that I have such a strong faith and believe that God is taking care of me and keeping me safe.

I am also thankful for my loving family and wonderful friends who are always by my side. Having a support system is very important. My friends are so terrific and are always there for me. They make this journey so much easier to tolerate because they are always there to guide me, especially when I am at my worst. I am also blessed to have such a terrific doctor who really cares about me and my well-being … Dr. David Wolf. I also have the best nurse, Robin, who greets me every week with a smile on her face and cares that I enjoy my "spa day of fusion."

Although the cancer is still present in all the same areas, kidney, lungs, liver and bones, I still continue with these treatments each year hoping that I can keep the cancer stable. I am strong and never give up hope and know that I will get through this. I believe that my positive attitude and my faith are keeping me alive. I continue to pray for all of you my warrior friends.

Written By: Bernadette Saco

Thank you Bernadette for sharing your story. As always, you are an inspiration!