Kathy Bienapfl

Friday, November 2, 2007

TUESDAY, SEPTEMBER 04, 2007 09:23 AM, CDT

I'm off to see the Wizard!

As my good friend Ann wrote, 'Just like Dorothy in the Wizard of Oz...'The next time I go looking for my heart's desire I'll look no further than my own back yard...'' I just never realized it would literally be my childhood backyard! I'm thinking I need to find a pair of ruby red slippers that sparkle and shine!

I am excited, fearful, anxious and hopeful to meet with the specialists at Cancer Treatment Centers of America. Since I posted that I would be investigating their treatment options, I have received many positive notes. There are many Stage IV survivors out there that were told to make peace with the world and their creator. Once they visited CTCA things changed for them. I'm thinking Zion is a good name for a town of healing as its meaning is Promised Land.

Wish me luck as I go off to be scanned, poked, prodded and educated.....and possibly meet the Wizard! (No flying monkey's please!)

My love to you all.

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When initially diagnosed with Stage IIb anal cancer, I was one month shy of my 47th birthday. Unknowingly, I had been fighting tumor growth for a minimum of seven years. Prior to my diagnosis, I had been to the emergency room several times with lower abdominal pain, only to be sent home without answers. I had also expressed concern to my gynecologist. The answer was a prescription for Irritable Bowel Syndrome. No tests...just a prescription to make it go away. Needless to say, the pain continued to get worse, as I was erroneously diagnosed.

Stage IIb is a very treatable cancer. July 2006 treatment began with initial 120 hour infusion of 5-FU chemotherapy regimen. At the same time, I underwent five weeks of pelvic radiation therapy, with a second infusion of 5-FU at the end of radiation to complete treatment.

Follow up testing and biopsy in November 2006 found no indication of cancer. I was officially in remission and life celebrations began.

Fast forward to May 2007. My colorectal surgeon recommended a PET scan during a follow up appointment. PET revealed tumor growth in right lung. Within days of new diagnosis, lung surgery revealed that the same squamous cell anal cancer had metastasized and required the lower lobe of my right lung to be removed. Unfortunately, there are also tumors in the lining of my lung, which is inoperable.

Upon healing from thoracic surgery, Folfox6 chemotherapy regimen began. At the same time, I traveled to Memorial Sloan Kettering in New York for a second opinion. The doctor at MSK agreed with the treatment prescribed. Unfortunately, the doctor also advised that I was incurable and gave me a prognosis of approximately 5 years, due to the tumors in the lining of my lung.

August 2007 chest x-ray revealed tumor growth. My cancer was resistant to Folfox6 regimen. Time for 3rd and 4th opinions. Traveled to Cancer Treatment Center of America in Illinois and Mayo Clinic in Rochester, MN. Made the decision to be treated with Dr. Axel Grothey at Mayo Clinic. The suggested regimen is Taxol/Carboplatin.

February 2008 regimen was changed to Irinotecan/Erbitux. Due to a rare reaction to the infusion, this specific regimen is no longer available for my treatment. This was my final option for chemotherapy treatments.

April 2008, after being considered for thoracic surgery, was advised once again my condition is inoperable.

June 2008, accepted into Cancer Treatment Centers of America first ever FDA approved Phase I trial for Vitamin C Infusion Therapy. Therapy showed necrosis of largest tumor.

August 2008, receiving TomoTherapy treatment at Cancer Treatment Centers of America. This therapy is directed to my right lung to alleviate pain in my ribs. The pain is due to the cancer spreading to a portion of bone adjacent to one of my tumors.

October 2008, follow up CT scan revealed either complete obliteration or significant decrease in size of tumors.
New tumor found in left lung. Currently undergoing five additional weeks of TomoTherapy.

February 2009. follow up CT revealed that TomoTherapy treatment worked! Currently in remission. No further treatment or scans necessary for six months!!!

I chose to share my story through this blog, as I have a great desire to educate and get the word out that colorectal cancer is not an old man's disease. Colorectal cancer is afflicting younger people and early screening is crucial.'

https://www.asrt.org/media/images/rtc07/TomoTherapyLogo.jpg

Anal Cancer Facts

Anal cancer arises from the cells around the anal opening (verge) or within the anal canal (1-2 inches long) up to its junction with the rectum. Most anal cancers arise from skin cells and are called squamous cell carcinomas. Some arise from the special mucosal cells lining the upper anal canal and are called cloacogenic carcinomas. Although several other types of cancer may occur in this area, these two are the most common. They behave similarly and are treated in the same fashion. Cells that are becoming malignant but have not invaded below the surface are "pre-cancerous" (carcinoma-in-situ). This condition is called Bowen's disease.

Anal cancer is fairly uncommon. It accounts for about 1-2% of gastrointestinal cancers. About 3,400 new cases of anal cancer are diagnosed each year in the U.S.A., and about 500 people will die of the disease each year. This may be compared to 140,000 new cases of colorectal cancer with 50,000 deaths per year.