Topic: Violarob in Texas: one-year update
Howdy to all: Allow me to share my story with you. It may be helpful to those who pass through this web site. I will try to pack the maximum information in minimum space, so forgive me if the style seems austere, spartan or unfeeling.
ME: 50-year-old white single male, with 20+ years of chronic hepatitis B infection (since 1988) and 10 years of cirrhosis caused by hep B (since 1999).
2003: diagnosed with gastric varices. Began treatment with Hepsera (adefovir) to suppress hep B. Treatment successful, virus completely suppressed for 5 years.
2003-2008: Screened every 6 months with ultrasound and MRI to watch for liver cancer and/or worsening of cirrhosis.
January 2008: ultrasound shows possible small lesions. MRI also shows possible small lesions. Number and size of lesions difficult to visualize on scans, biopsy ordered. Biopsy confirms malignant cells, but pathologist unable to distinguish whether it is HCC or cholangiocarcinoma.
February 2008: TACE procedure (transarterial chemoembolization) performed with doxorubicin. During the procedure, 7 lesions were visualized, 2 of them being 2 cm in diameter, and 5 of them being 0.5 cm or less in diameter. Only the largest lesion was treated with doxorubicin. Diagnosis was changed to multifocal HCC. I was deemed to not be a candidate for liver transplantation, or resection or radiofrequency ablation, due to the extent of the existing cirrhosis and the multifocal nature of the cancer. I was advised to seek consultation with a liver cancer specialist.
March 2008: I was accepted as a patient at MD Anderson cancer center. MDA pathology determined that my cancer was neither HCC nor cholangiocarcinoma, but a very rare mixed cancer which is a combination of the two types. (It is usually called "mixed cholangiohepatocellular carcinoma"). It was determined that the chemoembolization did stabilize the one tumor that was treated. MDA also agreed that I was not a candidate for resection or radiofrequency ablation. I was started on a chemotherapy regimen of Gemzar (gemcitabine), and cisplatin infusion given once every 3 weeks. (the usual regimen is to infuse once a week or once every 2 weeks, but my platelet count would only tolerate once every 3 weeks). In addition, I was prescribed Tarceva (erlotinib) pill, 150 mg taken once a day.
April 2008: I launched on an intensive program to educate myself about this rare cancer and cholangiocarcinoma in general as well, and also to investigate all the dietary, supplemental and alternative treatments available. I scoured the internet daily for information. The most valuable resource I found was a book called "Beating Cancer with Nutrition" by Patrick Quillan. So, in addition to the formal chemotherapy I was receiving at MD Anderson, I created my own regimen consisting of low-sugar diet guided by the glycemic index chart of food values. Daily supplements included selenium, alpha lipoic acid, milk thistle, CoQ10, resveratrol, rice tocotrienols, red yeast rice. Celebrex (a COX-2 inhibitor) was added to my drug regimen at my request as a chemotherapy potentiator. I also practiced home hyperthermia 24 hours after each chemotherapy treatment by immersion in a jacuzzi for 45 minutes until my temperature rose to 102 degrees. I also took a coffee enema 4 days after each chemo treatment to clean out all the dead cells and toxic chemicals from my intestinal tract. Information on all the above can be found easily on the internet via Google search.
June 2008: After 4 rounds of chemotherapy, CT scan revealed that all lesions had decreased in size. The smallest lesions were now almost too small to be seen on scan (the radiologist described them as "tiny"). I was very lucky with my chemotherapy regimen; I did not ever have nausea or vomiting. I did not suffer from fatigue and did not lose my hair. I had good appetite and good energy. I went to the gym and swam every day. I continued the Gemzar, cisplatin and Tarceva throughout the summer and early autumn.
October 2008: The 5 smaller lesions are now barely visible on CT scan. It is hoped that these lesions are now just residual scar tissue and are no longer active. I am now considered a candidate for radiofrequency ablation to treat the remaining 2 lesions which had started at 2 cm each and are now down to about 1.5 cm each. Chemotherapy is discontinued in preparation for surgery.
November 2008: Radiofrequency ablation surgery done at MD Anderson by Dr. Steven Curley, the man who invented the procedure. 100% ablation of both lesions was achieved. Intraoperative ultrasound did not reveal any other active lesions.
December 2008: Post-surgical follow up. It is decided to do at least 6 months of "clean-up" chemotherapy with only Gemzar to be infused every 2 weeks. Tarceva pill might be added again at a later date, depending on my progress. Follow-up scans will be done in February and May. I am cautioned that although I am cancer-free for now, this type of cancer tends to come back, even after successful resection or ablation. It is hoped that the "clean-up" chemo will greatly retard the possibility of recurrence. They expect that I can have several years of good health and good liver function, at which time there should be even better treatments available when/if I should need them. I plan to continue my home regimen of supplements indefinitely.
To all those who have been freshly diagnosed, remember this: When I was first diagnosed a year ago, I was given only a 20% chance of living for another year. Here it is, a year later, and I am happy, healthy and cancer-free for now. I don't know how long it will last, but it is a great feeling! So, my advice is to fight like hell, don't give up hope and do everything you can to help your doctors help you! Good luck, and bless all of you on this web site who have been so helpful to me this past year.
Violarob in Texas