Tuesday, September 27, 2016

This is the day!

Hey!! Guess what?  I'm still here!

It's been another year. Life goes on as if cancer has never touched me, but it has. It has touched me with it's heavy hand that leaves it's indelible mark. Some marks are deep and ugly, some are invisible and painful. Cancer has taken parts of me, what's missing may not be noticeable to others, but I know what I've lost.

Cancer leaves a mark on everyone that it comes close to. Those whose family members and/or friends have been hurt by it, maybe their lives taken by it. Cancer touches those who spend their lives treating those afflicted with it. Cancer touches those whose lives are dedicated to researching it and searching for ways to prevent and treat it.

When I was diagnosed 5 years ago, I had a 15-20% chance of surviving to this day. That's not great. Not at all. The treatment plan seemed to be, "we'll try this until...". I can vividly remember feeling so distraught that I would die before Lola, who was at the time 7 years old. I remember when Dr. Mora informed us that I had Stage 4 melanoma, based on the pathology reports from my ovary that he had surgically removed. That was September 27, 2011.  It seemed he was holding back tears. I assume, because he thought I would die from this disease. Dr. Mora has since told me, that he did not think I would live. Certainly not past 5 years.

If I were diagnosed today, my survival rate would be higher (not terribly, but higher). That's because of the countless hours of research that have been done to develop new treatments and medications to treat advanced melanoma.

In 1975, Dacarbazine was the only agent approved by the FDA to treat metastatic melanoma. 15.3% of patients treated with Dacarbazine experienced partial (11.2%) or complete (4.2%) responses. Both the partial and complete responses were seldom durable, and fewer than 2% of patients treated with Dacrbazine were alive at 6 years. High dose Interleukin 2 was FDA approved for metastatic melanoma 23 years later, in 1998. This was the treatment that I had. It had a little better outcome rate. The overall response rate was 16% (CR 6%, PR 11%). 60% of the complete responders had durable responses (meaning they were still alive at 5 years). I fall into that group. In March of 2011, Ipilimamaub was approved by the FDA to treat metastatic melanoma. That's 13 years between the approval of 2 drugs. Can you imagine the frustration and dedication of the researchers involved. The heartache of patients, families and all of those involved in treatment of these patients. Since 2011, the FDA has approved 7 new treatments for advanced melanoma. All of these treatments are immunotherapies, which means they trigger the patient's own immune system to fight the malignancy.  This is in part because  melanoma is the most "immunogenic" of all cancers. That means, it is the most likely to produce an immune response. In 2013, the magazine Science named immunotherapy as the "Breakthrough of the year". This is a journal that covers everything from one atom to the entire universe and they considered immunotherapy to be the most exciting thing happening in all of scientific research, advancement and discovery.

I go to a melanoma symposium every year that is held at the Fred Hutchison Cancer Research Center, organized by the Melanoma Research Foundation. Every year I go and listen to the speakers discuss new treatments, new advances, new understanding of the disease. I listen to patient stories. I leave feeling amazed. Amazed that there are such truly advanced medical and research centers that I am a part of. Thankful that I have and continue to benefit from their excellence. Amazed that these brilliant doctors and researchers are so dedicated to research and treatment of melanoma. Amazed, and so grateful,  that I was fortunate to receive and continue to be followed by the physicians at this excellent facility. Amazed at the strength and grace exhibited by the patients who share their stories. Finally, with regard to my personal experience with cancer, I feel inspired, empowered, grateful, powerful, humbled and strangely proud of what I have endured.

I guess it seems odd, but I do feel proud because of what I have experienced. I feel powerful because of what I have experienced. I feel empowered because of what I have experienced. There is no guarantee any treatment will work. Who knows why IL 2 worked for me? But it did. And going through IL 2 treatment was hard. It was really, really hard. Harder than anything I have ever done and harder than anything I can imagine doing. I did it and gained 50 pounds each time. I did it and pulled out my own PICC line. I did it and my skin peeled off. I did it and developed SVT that required electrocardioversion. But I did it! I did it with a lot of help. I did it with a lot of complications. And I could do it again if I had to.

I don't think about cancer, my cancer, as much as I used to. But I still think about it everyday. I guess that says something about it's occupation of my brain. I used to feel an absolute certainty that when I  died, it would be due to melanoma. Now, I'm not sure. Maybe? But not yet.

Heather