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Jul 24, 2018 Latest post:
Sep 8, 2018
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
As many of you know, I was diagnosed with Stage IV melanoma in 2014 and after about 2.5 years of treatments was fortunate to be in remission or NED (no evidence of disease). I continue to get routine maintenance scans to ensure that there is no evidence of the cancer. Last April, my scans showed a “shadow” on my liver which was not there six months ago. With additional PET/MRI scans and a liver biopsy, it was determined that I had a new form of cancer/tumor that has been growing fairly quickly. The cancer is not a common type called cholangiocarcinoma (CC) and the tumor was already 2.25” by 1.75”. There are only about 2500 cases of CC in the United States each year and it is the same type of cancer that Walter Payton battled back in the 90’s. Why would I get this after successfully responding and beating a serious diagnosis with melanoma, the doctors have no idea other than it just being the unfortunate luck of the draw.
In meeting with Dr. O’Day, my oncologist at the John Wayne Cancer Institute in Santa Monica, the treatment plan will begin through a twelve week infusion process to shrink the size of the tumor so It can then be safely, surgically removed. The infusion process is a three week cycle that consists of the first week with 8 hours of infusions on Monday, the second week with 8 hours of infusions on Monday and then the third week is a rest week. This three week process is repeated 4 times for a total of 12 weeks. I started this process on May 22 and it should end the first week of August.
The infusions are of two chemo drugs (Cisplatan and Gemzar) and then an immuno-therapy drug (Keytruda) that I successfully took for melanoma for two years. Since Keytruda is not an FDA approved treatment for CC, Dr. O’Day had to go directly to the manufacturer, Merck, and make the case justifying them to provide the medicine through a special Merck Access program. The justification was based on the drug's initial success that it has been demonstrating in other clinical trials across the country for CC.
So far I am on week 6 of this process and thankfully the only side effects have been primarily fatigue of which I have been able to deal with. After week 9 which will be the week of July 16th, I will be getting additional scans to see if the treatment is working (shrinking the tumor). Both Dr. O’Day and the surgical oncologist are very optimistic that the infusion process will have the prescribed effect of shrinking the tumor and so it then can be removed via surgery.
In the event that the infusion process does not work, then we have two options. The first is to remove the tumor in its current state and hopefully there will be enough clearance and margins to successfully abate it. There is risk in that we will not know if it was successfully removed or not and that it will be a wait and see approach to see if the cancer comes back.
The second option is to look at the clinical trials for CC across the country that focus on specific biomarkers and molecular alterations of the tumor. Although my insurance did not initially approve genetic profiling of my tumor at this juncture, through the guidance of my doctor’s office, I am working with a molecular intelligence services firm that is analyzing and reporting on the genetic make-up of my tumor. Once we know the specific genetic biomarkers of my tumor, then we can hopefully link up with a clinical trial option that is matched up with that molecular alteration/biomarker for treatment.
The hope is that this initial 12 week infusion process will be successful in shrinking the tumor to manageable size so it can be successfully removed and that we do not need to look at the other two options. Time will tell and we will cross those bridges when we get there.
I was positive and upbeat through my melanoma past experiences and I continue to be the same dealing with CC. I am very grateful that I have felt good enough to work which has giving me a focus and a sense of normalcy. The ability to work and focus has been in turn very cathartic in dealing with this situation.
I am very grateful for all of the support from my family, work and friends. I am so fortunate and appreciative in more ways than words can describe. A big thank you to everyone for their support, kind thoughts and prayers. It means a lot to my family and I and we sincerely appreciate it more than you know.
Stay tuned as I will be continuing to post more updates. Have a terrific week and all the best to you!