Paying It Forward

Today I begin 18 more weeks of chemotherapy. Honestly, I'm scared. I know (or have a good idea) of how this particular drug (although different from my other chemo drugs) will make me feel: fatigued with GI issues and sore hands and feet. Yet, I open the bottle of pills that are now sent to my house and take two at breakfast and two at dinner. Increase to three at breakfast and three at dinner for the second week. Fourteen days on, seven days off - for six rounds, eighteen weeks. And hold on.

We are prepared should the known side effects, listed earlier, begin to surface. This drug like the others produce their crappiness on a accumulative basis. They get worse as the weeks on go.
 
All of this because I want to be a part in out how medical professionals and the women who will come after me in this fight can better manage, defeat and prevent cancer. Breakthroughs in research and medical care have come via clinical trials. I know the care I received, the techniques of my surgeons, the confidence of my oncologist were the results of these efforts. Of the brave women who came before me, who volunteered to try new drugs, new regimens, undergo new surgeries. Some of which worked, some sadly that did not. I wish to pay that forward.
 
So my team had been looking for a clinical trial for me since my diagnosis. Sadly, there aren't as many as you'd think. The protocols and requirements to be included in a trial are extremely stringent. You have to have a specific type of cancer, have had a certain prior chemo protocol (or not), be of a certain age, live nearby (or reasonably so) in order to participate in the treatment and/or evaluations, etc. Many trials involving triple negative breast cancer are focused on metastasized cancer. Cancer that has returned and is very difficult and or impossible to cure. I suppose this is because triple negative cancer is the most aggressive of all breast cancers. Chances are decent that this bastard will return. Finding a cure for when it does is certainly critical.

Coming out of surgery, however, my oncologist mentioned a trial, being conducted by the National Institutes of Health (NIH), that sounded promising. The purpose of the "Eastern Cooperative Oncology Group" or "ECOG" ,  according to "ClinicalTrials.gov : "This randomized phase III trial studies how well cisplatin or carboplatin (platinum based chemotherapy) works compared to capecitabine in treating patients with remaining (residual) basal-like triple-negative breast cancer following chemotherapy after surgery (neoadjuvant). Drugs used in chemotherapy, such as cisplatin, carboplatin and capecitabine, work in different ways to stop the growth of tumor cells, either by killing the cells, by stopping them from dividing, or by stopping them from spreading. It is not yet known whether cisplatin or carboplatin is more effective than capecitabine in treating patients with residual triple negative basal-like breast cancer." 

Because I did have "residue cancer" post-chemo, it seemed I would qualify for this trial. I fit all of the multiple qualifying factors and qualifications to be a participant and the trial - involving over 560 women- was nationwide and my hospital, Sibley, was the local participating institution. There was only one factor that could disqualify me. Just how much residue cancer did I have as opposed to how I needed to have to qualify. Well, as my oncologist said several days post-surgery: "I have good news and I have bad news."  As it turned out, I did not have enough residue cancer to qualify for the trial - that was the good news by the way, along with the fact that neither lymph node removed during surgery showed evidence of cancer.
 
One of the drugs being used in the ECOG trial had already gone thru a "successful" trial in Asia. The CREATE-X study, presented at the 2015 San Antonio Breast Cancer Symposium, showed to increase disease-free and overall survival rates of folks like me. This result coupled with the fact that capecitabine, or Xeloda, is a pill you take at home verses via IV, is "less toxic" than its counterpart drug in the ECOG study, and that I had a 50/50 chance of being randomly assigned to either drug had I qualified, we have decided to "shadow" the ECOG trial by taking capecitabine (Xeloda) for six rounds (18 weeks) as prescribed by the trial. 

Today is Day One of the next eighteen weeks - my "maintenance drug" meant to keep this bastard from ever returning. And while I'm not officially participating in the ECOG trial, I hope whatever happens to me - during treatment and after - can be helpful in making care and treatment strides for women who will fight this battle after me.

I plan to keep up my daily morning walks with Bettie and add in increasing time on my Concept2 Rower to strengthen and stretch my chest. For as long as I can. I've healed extremely well from surgery. And yea, I don't miss putting on, tugging at, and otherwise managing a bra, in case you were wondering.

We have two big trips planned this fall - I don't plan to miss either. We are contemplating our futures. What they hold and where they unfold. We are looking forward. Keep rooting for me.

Onward!

I. Am. Cancer. Free. 

Like the sound of those words. As of my surgery on July 24th, I no longer have cancer.

Although, it could return (and if you have been following along closely I apologize for being repetitive) as I have triple negative breast cancer (TNBC). The most aggressive all breast cancers. According to Contemporary Oncology, about 34 percent of women with triple negative breast cancer experience a distant recurrence with the average time of relapse being 2.6 years. According to BreastCancer.org, the five year survival rate for TNBC is around 77 percent versus 93 percent for other breast cancer types.

 

But enough of the scary news. Right now I'm now cancer free. And from a medical "standard of care" definition, I have completed my cancer treatment. I'm done.

But.... I'm not. 

You see from the very beginning of this fight, I told Liz I would go beyond my treatment (regardless of the outcome) and enroll in a clinical trial. Whether or not the trial helped me, I wanted to play a part of helping women who will come behind me in this fight. To do that, you can become a participant in a clinical trial. You volunteer to join the medical professionals who are giving their careers to finding a cure for you and others like you. Clinical trials are specific- meaning the participants selected for any trial must meet rigorous characteristics and protocols. 

Post-surgery, my oncologist was excited about a clinical trial currently being run out of the National Institutes of Health (by the way, people who work there are super heroes and literally life savers). The results of my surgery discovered my tumor had shrunk 90%. And my entire medical team was thrilled about those results. Me, being of type-A over achiever ilk, was looking for 100% (referred to in the medical world as "complete pathological response" or "pCR"). According to the most recent research, complete pathologic response rate of approximately 15%-18% is seen among patients with all breast cancers, and the pathologic response rate in patients with triple-negative disease is quite a bit higher, maybe as high as 30-35%. This is in part because triple negative breast cancer reacts well to chemotherapy. But I got a 90 percent response and I will take every percentage . 

To qualify for this specific clinical trial, one had to have a certain percentage of "residue disease" or cancer left after chemotherapy but before surgery. My oncologist called a few days post surgery to give me "good news and bad news". The good news being obviously a 90 percentage shrinkage is terrific, but the bad news was to qualify for this trial, one needed a higher percentage of residue disease before surgery. That's ok. I didn't want to "qualify" for that trial, anyhow! So at the moment, there are no trials out there that I meet the criteria for. 

However, a clinical trial presented at the 2015 San Antonio Breast Cancer Symposium on December 2015, known as CREATE-X, was actually stopped early, in 2015 when it became clear that the drug, Xeloda had benefits for women with triple negative cancer with residue disease post surgery. 

While this drug has yet to become part of the "standard of care" for cancer patients like myself, my oncologist, Liz, and I agreed that given what we know about my disease and my willingness to continue care, I would start yet another round of chemotherapy - this time using Xeloda - to give me the best chance known of survival. I suspect I will begin this next round in the coming week. We are looking at 18-24 weeks on this drug, if I can tolerate the side effects. It is a pill that I will take at home, twice a day for two weeks and have one week off for 6-8 rounds. I will be closely monitored by my medical team while I am on the chemo as before. I look at it as my "maintenance drug". Women who have other forms of breast cancer take medication 5, 10, and 15 years post original diagnosis to keep cancer from reoccurring. My type of cancer has no known medication so I will throw another chemo drug at it, continue to look for clinic trials that I qualify for, and remain positive and to lean on my wife, and our village of family and friends to get us through. So keep rooting for me.  Keep Liz in your thoughts (and occasional email).

 

And so I move onward. Cancer free and determined to stay that way. Oh and boob-less. 

Cheers!!!

Fight Like A Girl

A little girl joined the world on July 24^th. She may have been one of some 250,000 babies born in July, but this baby is special. She and I will share an amazing bond to thrive for existence on this earth that she may never fully realize – neither may I – for the rest of our lives. 

You see, her parents are neighbors. And when I started chemo in February of this year, Liz felt better about me driving to work if someone would ride with me. Liz – for those of you who are not aware – rides her bike and or runs into work each day. It’s something she cares deeply about, it’s good for her emotional and physical health and she has been doing it for years. Her life had been uprooted enough already with all this cancer-related stuff and I did not want her to lose this piece of herself. So I would continue to drive to work, but we would ask my work colleague – and neighbor – if he would drive into work with me every day.   Mike agreed. He proved to be a wonderful commuting partner. We share a love of Africa and travel and conversation was easy.  Shortly thereafter, he announced he and his wife Kelly were pregnant and Kelly became a regular commuter, too. I truly enjoyed our rides to and from work. I found myself less stressed about traffic and the stupidity of fellow drivers. We were never at a loss of conversation. The dad-to-be and I shared many conversations about his newly found awareness of what it takes to be female in this world even before his baby girl was born. She would have to be smarter, stronger, tougher. Hearing how their pregnancy was progressing and how they as a young couple were readying themselves for the arrival of their first born was awesome and entertaining.

As I struggled through my 20 weeks of chemotherapy, and dealing with my fears for my life, listening to - and watching – their baby (shortly determined to be a girl) thrive for her life was a welcomed distraction – and amazing to see firsthand. Each day it seemed Kelly was getting bigger and the baby girl was getting more and more active. You knew she was a fighter.  We were both fighters. Each of us struggling to get to the next day, to participate in the world, to live. There were many times I caught myself from just losing it in the car on I395 at the thought of how juxtaposed our lives were at that point in time. There was this young couple discussing how they were checking off a long list of “honey to dos” to be ready for her arrival: painting the nursery, installing doors on open cabinet storage areas, etc., while Liz and I were focused on scheduling doctor appointments, handling the shitty side effects of chemo and just trying to hold on and holding it together until the next day. 

 

Her nursery was ready, her dog, Tank, was ready, her parents were ready, she was ready. She was due to enter the world July 31. If she arrived early and before my last day in the office before my surgery, the plan would be for me to get Mike and Kelly to their house where they’d pick up the “go bags” and be on their way to the hospital. I was overjoyed to share in the plan to help bring her into this world. But alas, July 21 came and went and she was not yet ready to make her entrance. 

My surgery, scheduled for 7:30am on Monday July 24^th consumed me that weekend. It’s a lot to take in: waking up to no boobs was the slightest of my worries. How much cancer survived the 20-week chemotherapy? Had cancer gotten into my lymph nodes – your body’s highway to anywhere and everywhere. Ugh.

In my room, post-surgery (and before I ordered mac n cheese and carrot cake to celebrate), Liz looks at her phone and gasps. What?! I say. What’s wrong? (what could possibly wrong?). Nothing, Liz replied. She had let Mike and Kelly know I was out of surgery and they in turn sent a picture of the young parents and their little girl, Winny. She had entered this world about the same time I became cancer free. For so many reasons, she will be forever in my thoughts each year at this time. You can bet I will be sending her a birthday card to honor and celebrate her every year in this world as well. Happy Birthday to us both. #Onward