2016 - Here I Come!!

It’s finally 2016. I have really been looking forward to this day. 2015 was a really really rough year. I had a few surgeries (including getting a permanent ostomy), I had to leave my wonderful Genentech PDL1 study and go back on chemo (which has resulted in me being quite ill, losing a lot of hair and sporting a fabulous rash among other things), we ended up finding not just a fistula in my rectum, but also one in my bladder and my lowered immunity has resulted in E. coli colonizing my body. But I’m getting ahead of myself.

I apologize for taking so long to get you all up to speed. My life has been chaotic over the past two months – unfortunately many things didn’t go so well physically. That is why I can’t wait to start a new year!

So – I did end up getting my three-part chemo cocktail – irinotecan, 5FU and Vectibix. Several days in I was still nauseated, and instead of abating, it kept getting worse. I was far from my medical team, as less than a week after chemo I had jumped on a flight for a work event in Hawaii.  

I couldn’t leave my room and missed part of my conference, which caused my colleagues to worry…they know how I hate missing anything. After my oncology doctors expressed concern at my condition, my wonderful friend (shout out to Jen Fitzgerald!) brought me to the Urgent Care Center near our hotel in Maui. We discovered that the stomach pain and nausea weren’t the chemo -- I had E. coli. This is not the E. coli you can get rid of easily with an antibiotic. This E. coli had “colonized” my body. They’re not sure that there even is an antibiotic that could effectively go after this E. coli because it is so strong. For now, I’m stuck with E. coli permanently in my system, so I must be vigilant not to get an infection. Therefore, I carry a thermometer in my purse at all times to make sure that I don’t have a fever. If I get an infection and it moves into my blood, that can be very serious.

Because my oncologist was very worried about my reaction in Hawaii, he cancelled my next infusion altogether. Then, he only had me take Vectibix for the past month (this is the drug that causes my face to break out in a rash. But – to be honest, the rash hasn’t been nearly as awful as I thought it would be).

Again, I should try not to get ahead of myself. We got home from Hawaii, I continued to get ill for quite some time. (I took Irinotecan several years ago, but didn't have any of these extreme problems.) Scarily, the following week, I was responsible for putting on my biggest conference of the year in Napa – with 17 legislators!

The conference was to begin mid-day on Thursday, Dec. 3^rd. On Wednesday, I had noticed that my left foot was swollen. But – I chalked that up to being excessively on my feet and ignored it. On Thursday afternoon, my left ankle and foot were very puffed out. My Davis oncologist, Dr. Thomas Semrad, happened to call that afternoon to follow up with my about my E.coli. While he was on the phone, I took that moment to ask him if I should be concerned about the swelling. After talking to me for all of one minute, he told me to go to the nearest hospital and get a vascular ultrasound. I begged him to let me wait until the following day, but apparently he was concerned that this was the sign of a blood clot. And – if it was a blood clot and it broke off and went to one of my lungs, it could be fatal.

So I left the conference. My conference. To go to the hospital in Napa (a big shout out to Mike Carpenter for taking me to the hospital!). I was very lucky that the hospital wasn’t crazy busy and everyone at the hospital knew that I needed to get out of there quickly to get back to my conference if at all possible. Amazingly, we got the ultrasound done (they determined that I have an artery pushing down on a vein that is restricting liquid flow) and I was back at my conference to MC the dinner that night!

I still have swelling in my left leg and foot and will be seeing a vascular expert in about a week to determine if he wants to put a stent in my groin.

Unfortunately, these weren’t the only problems that I had this month – I also was having trouble swallowing for a couple of weeks. It felt like there was food caught in my chest. Dr. Semrad was concerned that this new problem (coupled with my other medical issues) signaled more cancer growth. He was now wondering if colon cancer had moved to my esophagus.

I was ordered to take a CT, stat, to rule out cancer growth in my esophagus and throughout my body. I was thrilled to find out that there was no indication of further cancer growth. The doctors were actually surprised. But – that’s a good sign that it’s not showing growth. Dr. Fisher still thinks that there’s growth that we can’t see, so he won’t let me go back on my wonderful PDL-1. He’s making me stick with the toughest chemo that I can take.

Don’t worry about me, though! Just last week we were up on the slopes in Tahoe. I refuse to let this disease stop me from living my life.

So – what will my treatment look like for 2016? Because I had such a violent reaction to the irinotecan (vomiting, nausea, loss of hair etc.), they are going to lower the dosage dramatically to try to make it tolerable (and so that I don’t lose significantly more hair – fortunately, I was blessed with a lot of hair at the outset).

Following the irinotecan, I will be hooked up to the 5FU (although they told me that the pump would be the size of a cell phone and easy to carry around, it’s the size of a cell phone from the 1980s…) Then, 46 hours later, I will return for the Vectibix infusion. We’ll continue to do this every two weeks for as long as I can tolerate it.

What I really love is that my oncologists from Stanford and UC Davis are working together. I went in to see Dr. Fisher last week at Stanford to check in and he informed me that earlier that day he had spoken with Dr. Semrad at UC Davis about what their joint recommendation will be. I love that they did that without me asking. I’ve learned over the years, that the best oncologists are completely willing to work with other oncologists and get their opinions. It’s the insecure oncologists that resent patients pulling others into helping with their care. Did I mention that I adore my oncology team? As I was leaving Dr. Fisher last week, I turned to him and said “can you believe that you’ve been treating me for 8 years?” His response? “8 Years? It feels like 20!!”

I did get some unfortunate news earlier this week. As many of you may be aware, when I had my ileostomy surgery in July, we grabbed a bunch of tumor for testing. A significant portion of my tumor went to a place called Jackson Labs (JAX) for them to implant in immune-suppressed mice. Their goal was to grow my tumor in a living creature and then test 4-5 different drugs to determine which one(s) would be the most effective on my tumor.  While my tumors have had drug testing done on them several years ago, we’ve never had the opportunity to test drugs out on tumors that are in a living body. The belief is that tumors react differently in a live body, so this is most closely going to replicate what would happen in my body. They were able to implant tumor in 15 different mice. Generally it takes about 3 months for the tumors to grow. After 3 months, I received a call from the head of the lab letting me know that my tumors hadn’t yet grown, but they had hope that we’d see tumor growth over the next 3 months. Unfortunately, on Wednesday I received both a call and an email from the head of JAX labs letting me know that now, after 6 months, with no growth of the tumors being seen in the mice, it was now time to terminate the attempt. Dr. Fisher’s response to this news was “I guess that’s a mixed blessing. Turns out that the mere ability for tumors to engraft in mice is actually a bad prognostic sign. Those patients whose tumors do not grow in mice tend to do much better than those whose tumors do grow. Anyway, let’s take the optimism wherever we can find it.”

Therefore, while I am saddened that we won’t have the ability to get further information from the tumors in the mice, I am relieved to hear that this is actually a good sign. I will take that optimism wherever I can find it!

Later this month, Dr. Fisher will be going to the ASCO conference to hear about the latest breakthroughs for colorectal cancer. Let’s all hope that he hears something very promising!

This past week, following our Christmas skiing adventures (there’s nothing like being a Jewish skier on Christmas Eve Day and Christmas Day), we went to my sister’s cabin in Lake Isabella to spend our annual winter holiday with her family. This is a very important tradition for all of us. Last night, we grasped hands around our New Year’s Eve dinner table and vowed that we would always celebrate New Year’s Eves together. And – that we would be celebrating these new beginnings for many many many more years to come.

Thank you for all of your phenomenal support over the past year. May your 2016 be filled with love, light and lots of health!