Monday, July 11, 2016

Falling off the cliff

I was diagnosed with Cancer in the office of my OB/GYN in Nashville. I had just starting seeing her because I was pregnant again. They called me in the afternoon and told me to come to the office ASAP, that they would keep the clinic open and that I could bring my husband and son. On the ride to the office we knew it wasn't good but there isn't a soul in my family who has ever had cancer, to my knowledge so we suspended fear. The first of many times we have asked ourselves to do this. The nurse watched my 1 year old while my OB told us about the confusing results. A vaginal mass that we had assumed was first bladder prolapse and then later a large cyst was positive for malignant melanoma. However, when melanoma is present in this location it's almost always from metastatic illness and if it is the primary site it usually only occurs in older women. It was January 27th, 2016. 

A series of scans and a surgery later we sat in another office with my OB, medical oncologist and maternal fetal specialist to review the results of the post-surgical biopsy and were told that though they got clear margins the worst features possible in a tumor were present. Confirmed melanoma of primary vaginal/mucosal origin (oh), ulceration (uh oh), an extremely high mitotic rate (no!), and lymphatic involvement (well, crud). My expected survival rate given was 5% in 5 years but it's rare so.. they don't know. Treatments bring this up to 10%, at best, but... they don't know. They expect that it will return in another location very soon if nothing is done - and none of the possible treatment options are in any way compatible with pregnancy. In fact, pregnancy hormones are thought to feed melanoma and melanoma is tricky enough to cross the placenta but this cancer is so rare that, again... they don't know. The recommended treatment for melanoma at this time is the Ipilimumab/Nivolumab combo, though this is only FDA approved for standard practice in metastatic melanoma and, technically, there was no imaging evidence of metastases at the time. Also, it hasn't been studied as a post operative adjuvant treatment for long enough so... THEY JUST DON'T KNOW. Over the next few weeks we seek several other opinions from oncologists and maternal fetal specialists. The consensus seems to be that remaining pregnant would mean a good chance that neither one of us would survive. I chose to focus on my health. I have never before in my life felt as selfish. 

I decided to try biochemotherapy at MD Anderson Cancer Center (MDACC) as this is the only place that recommended this treatment and could be done prior to the combination therapy. This is a grueling therapy with a low chance of success but a possible cure for a lucky few. On three separate occasions I flew to Houston, had a port surgically placed in my upper arm, checked into the hospital, had a week-long constant infusion of IL-2 (always attached to the pole), three different types of chemo and daily injections of interferon. When I returned from Houston each time I felt about 90 years old, with each day I regained around 10 years of vitality. The hair loss began around the time of my second infusion and continued until a month or two after my last round. Right before my second round I also went through luekapheresis to extract my t-cells to be grown in the lab for a study going on at MDACC. 

I requested a CT scan after the last round of biochemo because it had been three months since my last scans. The CT showed enlargement of one of my pelvic lymph nodes. They said I had time to return home and recover from the last round before we investigate whether or not this is recurrence, sometimes treatment can cause enlargement like this. I returned home but I couldn't shake my intuition that this wasn't just inflammation so I flew back for a needle biopsy of the node (at my request). I got the results the next week over the phone. Melanoma. In the three weeks between the CT scan and my return for an MRI to see if surgery was possible the node had doubled again in size and there were now two more behind it but none of these were operable due to location so they can not be used for the adoptive T-cell therapy. However, my t-cells from the leukaphereis did grow so that remains an option, though the success rate is not as good. 

I decided to stay in town and start the newly FDA approved combination therapy of nivolumab/ipilimumab at Tennessee Oncology and that is where I am at the moment. I have about a 50% chance that I will have some period of stable disease (meaning nothing grows for a while) and a smaller chance of partial or full remission although these are thought to be mostly temporary. After the first of four combination infusions I've had almost no side effects aside from a rash. This is a huge change from the crippling (though temporary) effects of biochemotherapy. I have minor pain in my pelvis that comes and goes but I'm otherwise feeling great and enjoying being home! 

I plan to post updates and/or stories from my prior and ongoing experience in the journal section of this website so if you find yourself curious please check them out. 

JB <3 

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