It doesn’t seem like there’s been that much progress in the last three weeks, but I’ve been told differently by my doctors as well as family. It really seems as though the surgery recovery is taking FOREVER. The digestion issues I’ve had to deal with as a result of the Whipple are minimized and less frequent. My menu has grown extensively from jello and soup to a burrito bowl and fish tacos (yesterday), although I pressed my luck and ate a few deep-fried flour tortilla crisps with queso-blanco … that caught up to me overnight unfortunately 😞!
I had some great meetings with my physicians yesterday and will briefly summarize them.
My first meeting was with the pain management center physician. I’ve been off all pain meds for about two weeks now (Sept 26th I decided to stop taking them). This was quite surprising to the physician as he was expecting to provide a pain management plan for me (four weeks after surgery) as most patients continue to require this support. His actual quote: “you’re going to be my easiest patient today”. My biggest concern, which I brought to his attention, was the amount of nausea that I face day to day. Unfortunately, this isn’t something that the pain management group can help with, but it is a very common issue with post Whipple and would be something that the nutritionist and the oncologist approached later in the day.
My next meetings were with a genetics research counselor and then the genetics research oncologist. Denise and I had made a decision last month that we wanted to pursue genetic testing to determine if my condition could possibly be hereditary, which would arm us to prepare our children and other family members to be diligent in pre cancer screenings. Due to my family history of cancer, we where told that it very unlikely that it is hereditary, and the testing would most likely not be covered by insurance. We are pursuing it anyway and will pay for it out of pocket if required. The genetics research oncologist mentioned that the results of the 14 marker test could play a part in the treatment plan developed by my oncologist. I had the blood drawn yesterday evening and hopefully the results will be back within one to two weeks.
Next was the nutritionist consult. We covered the foods that I’ve been eating, the nausea that I’ve been having as well as the digestive issues that I’ve encountered with differing types of foods. The overall recommendations coming out of that where to drink less water during meals (it makes me overly full) and to avoid (for now) foods of a more dense consistency (such as Epic snack bars - which have been a staple of mine for a long time).
My final appointment of the day was with my oncologist, Dr. V. She explained the two treatment options, one based on having NO genetic markers and aggressive (option A - highly likely) and the other based on having genetic markers and less aggressive (option B -less likely).
Option A is a FOLFIRINOX regimen (a 5 drug cocktail, in the US it’s a 3 drug cocktail due to availability), and is the more aggressive option. At this point in time Dr. V is leaning toward this treatment because I am young, in good health and condition and she believes that I can withstand the side effects. There have been good studies that show this treatment option to be more successful than others. The treatment would be done every two weeks for six months.
Option B is a Gemcitabine and Cisplatin regimen. This is the less aggressive option, but could be more beneficial depending on some other factors and the genetic markers coming back positive. The treatment would be done every week for six months.
Both treatment plans are available in Europe and the FOLFIRINOX (option A) in Europe has better availability than in the US for a couple of the drugs (Leucovorin bolus and Fluorouracil bolus) that are in the cocktail and makes it a complete five drug instead of three. Dr. V also believes that the original trial for this treatment option was done in Dublin.
Dr. V’s final recommendation will come after we do a baseline post op CT scan with all of my newly acquired scar tissue and, surprisingly, after the genetic testing comes back. So, interestingly, although the genetic testing wasn’t required (it was an optional aspect of research), there is a genetic scenario in which the second option becomes more effective for my treatment!
The side effects of both treatment plans are all pretty icky - but let’s be realistic, if it gives me an extra 15% chance of kicking the shit out of this cancer, I’ll take it!
I can’t complain one bit about my stay in Houston and the wonderful chance I’ve had to visit with family, however I really miss my babies and am looking forward to heading home. I had phenomenal family support and care from Aunt Earlene (thank you for my lovenox injections!), Uncle Butch (thanks for sneaking me a few jalapeños … or as Connor says, “hot pianos"), Aunt Bonnie, Uncle Ray, my cousin Brandon and his wife, Melanie, and very cute kiddos! Of course, mom and dad have been extremely wonderful this entire time. Keep in mind that dad had surgery this week to have his pace maker installed, and he’s still worried about me taking _my_ Creon pills before eating!
Denise and I head back home to Dublin on Saturday, October 13th, and can’t WAIT to squeeze Connor and Riley … and maybe not let go! We’ll be working with an oncologist in Dublin to carry out the chemotherapy treatments and then will be coming back to MD Anderson in three months to check on progress and get another CT scan.
Once again, thank you so much for your continued thoughts, prayers and wishes! It’s so extremely uplifting to hear from you and most definitely has had a profound impact in recovery!
Peace & Love,Jay & Denise