Saturday, December 31, 2016

We are different, but all the same

An article was just released today in the Annals of Oncology that looked back at a (relatively) large group of individuals with Mucosal Melanoma (MM). The were attempting to answer the question of how different MM is based on the location of the body it beginnings in. When grouped together, you have sinonasal, reproductive/urinary tract, and gastrointestinal "primaries" (or first tumors). The findings were that they are mostly the same and can, therefore, be reasonably studied as a group. This is good news for research (power in numbers) and not surprising to me. I have been a part of an online group of warriors (and their caregivers) facing MM for the majority of this year. There are many primary sites represented but the experiences, successes and challenges, and questions are largely the same. We are all facing the same, formidable foe.

For me, the news in this article lies in something else that was reported but not much-discussed in the abstract. The survival rates from the study. When I was diagnosed at the beginning of this year, I was given a survival rate of 5% in 5 years, 20% in 2 years. This was less than one year ago. This study, published today, reported survival rates of 20% in 5 years and 60% in 2 years. This is a big difference. You can read the article's abstract here

We have lost many to the fight in just the last few months in our little online warrior pack. I has been very difficult for all of us to witness and to participate in. However, once the fog clears, the losses only make the survivors more powerful. We warrior on. Though its easy to believe the 'beast' that took our friends away has turned its eyes to us as if to say "you're next," we are learning to fight back and we are starting to win. Yes, the tides are turning on MM. The reason this is happening is because of research, awareness, and passion. Passion is often bred by personal loss, and that we have in abundance. The others need funding. We are nearly half-way to our goal for the MM awareness video. Thanks to all of you, we have raised $6,620 toward our $15,000 goal!! I am blown away by your generosity. Today is your last opportunity to give before the end of the year. Please consider giving to our campaign- every little bit helps. You can give here.

I will end with a quote from one of our dear warriors whose life was cut short this Christmas Eve. 

"Where there is life, there is hope" 

Wednesday, December 14, 2016

Windows and Doors


A major lesson I have been digesting over the past few weeks that nothing is black and white, not even life and death. After being diagnosed in January and pouring over all the research on mucosal melanoma and its treatment that I could get my hands on, I developed what I considered to be a pretty clear picture of which events meant that I would be kept safe within the fragile confines of ‘being alive’ and which events signaled my imminent expulsion into the unknown world outside of that. Since that time, I have gotten something qualifying for my ‘expulsion is imminent’ news more than once. Shock and depression would follow and I would begin to turn away from hope. However, each time, instead of opening that door to find the dark, unseeable expanse that I imagined, I have found myself somehow wandering into another room that I didn’t know existed, eyes wide to absorb the foreign walls and heart full of cautious gratitude. What do I know? Apparently not all that I thought I did.

Over the past couple of weeks, several new doors and windows have been revealed to me, including an old door that I thought had been padlocked and dead bolted behind me, the entry into which would not grant access to my prior comforts but instead lead to somewhere frightening.

A new CT scan and MRI showed that my tumor has grown again. Imminent demise initially suspected, I went through the perfunctory cycle of shock and depression. However, it was followed, much more quickly this time by audacious hope, because I’m learning that there’s usually a reason for it! Here are some of them:

1- Miraculously, my liver enzymes have returned to normal. I was able to get nivolumab ‘on time’ last week and it didn’t stir the ‘liver damage’ needle one bit. This was very unexpected and very welcome. It means nivolumab can likely stay on the table indefinitely and that I only need to get the labs drawn every other week, prior to treatment.

2 - The growth of the tumor was nothing compared with prior rates of growth. According to MDACC radiologists, it grew approximately .7cm in 7 weeks time. He used the word “slightly” in the report, which I appreciate but don’t fully agree with. However, in the past it has been known to grow 3cm in 4 weeks. So perhaps the nivolomuab is working after all.

3 -  After much deliberating, the gynecological surgeon and melanoma surgeon at MDACC have gotten a vascular surgeon on board to agree to a surgery to remove the tumor, in its entirety, as long as a scope reveals that it is feasible. The purpose is primarily to harvest the tumor for TIL, which will hopefully replicate in the lab and can be on hand as a back up treatment method if needed in the future. This is scheduled for January 11.

4 - There is still no spread! The nivoloumab is thought to be particularly helpful at preventing spread, so if my liver is tolerating it well I may be able to continue to get this treatment for a long time. The other tumors that were shriveled by the combination immunotherapy have not returned. Nothing new is apparent. Let’s keep this up.

5 - DR. MARKOVIC. At the urging of a few friends in my cancer support network I have successfully sought, and obtained, a second opinion from a creative and personable doctor at the Mayo Clinic in Rochester, MN. Friendly and impressive hospital aside, the visit was very positive. He told me (and here’s where the old door may reopen) that he would be comfortable giving me a small dose of ipilimumab with my nivo, essentially a dialed-back combination therapy, since I had such a great response the first time. He said they've had success with managing immune-mediated hepatitis with a different type of steroid that allows more immune activity and that if steroid taper of prednisone WERE required again it could be done much more quickly. He’s literally the author of a paper on this. He also recommended intra-operative radiation if I move forward with the surgery at MDACC and told me he would be happy to work with a local oncologist in Nashville as much as possible (that he feels a big role of his is to help local oncologists figure out what to do). He also has a few things brewing and coming down the pike that he thinks are just as good an option as TIL, should I need it in the future.

I’ve got ‘disease progression’ and yet I’m smiling because of the many windows and doors that have been revealed to me. These junctures have become less frightening and I’m realizing that I don’t have any idea what lies ahead, and that that’s ok.  

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