Friday, July 29, 2016

Round 3


Today was my third of four infusions of the ipi/nivo combination and the day I learned the results of my interim CT scan. I will avoid leaving you in suspense – the nurse practitioner breezed through the door with a big smile and told me that the CT scan showed that my main tumor has shrunk by about 50%.  When I asked about the smaller tumors she had to look again and said there was no evidence of them at all. My sister and I literally grasped for each other in shock- as if searching for the ground beneath our feet.  The NP exclaimed that it is a great response! I had been warned that stable size or even a little growth was nothing to worry about because you often don’t see any shrinking until 12 weeks. Well, folks, it’s been less than 6 weeks! Hallelujah! 
Yesterday I had planned to write a post, prior to hearing what the scans showed, to say that my intuition (though certainly not my head) was telling me that the treatment was working. I can't explain the intuition- I just knew. 
Some interesting events over the past few weeks- Wednesday I had a massage that included some Reike. For those of you who do not know- reike is a form of energy healing. Don't laugh! I have read about 'radical remissions' and been working on the areas I had not done any work with yet and that was one! I had done reike a few weeks prior as well (I believe it was about 3 weeks). During the first Reike session, she stopped her hands right over my right pelvis and said it was the strongest she was ever felt a pull for healing. She described it as a strong pulling and said that her hair was standing on end. We had discussed a little bit about my cancer prior to this but she was unaware that this was exactly where the tumors were. A few days later I was in my room meditating (stress management and keeping myself emotionally and spiritually healthy were other areas of need) and I really tuned out, perhaps fell asleep. When I brought my awareness back to the room my whole body was tingling and I had chills. As I moved around some I noticed I felt my body aching. Fever? I went to take my temperature and sure enough it was 100.4. In the days after this happened my temperature returned to normal but I had much more aching in my pelvis. It was so persistent and different than before that I contacted my oncologist to ask about additional treatments and he scheduled me for the interim CT scan (the very one I did yesterday). However, a few days before the scan the pain subsided and the sensations felt more normal. Because this was consistent with an immune attack in the area I started to feel pretty confident that good things were happening. Then, two days ago, during my next Reike session, she said the pull to my pelvis was significantly less noticeable. I hadn't told her that I thought was working. She focused more on my stomach area which I told her had been bothering me slightly for the past few days. Today the scans confirmed that we were both right!
I should be clear that this is not out of the woods yet. Mucosal melanoma is a tricky, tricky disease,
However, celebratory dancing and fist pumping are totally appropriate because this is big, big news. If things continue to shrink at this rate, and the melanoma doesn’t have time to get sneaky and become resistant, then I have a chance to be a complete responder and have what they call a “durable response.” The length of which is unclear to them at this point!  

Monday, July 11, 2016

Round 2


Early after my cancer diagnosis I often thought 'I could write a book about this.' My life was so full of unfairness - of getting this deadly cancer so young, of having to give up so much, of not getting to raise my own son. But-- who would want to read that book? It would only be full of sad thoughts and unanswered questions. It wasn't until more recently that I realized 'if I wouldn't want to read that book - why should I live that life?' So I set out to change my story. My new story is one that is richer and more full of life than it was even before all of this happened. I believe it was Christopher Reeve who said "When you chose hope, anything's possible"? There is a lot of truth in that and I look forward to sharing with you some of the amazing things that have happened in my life lately when I have more time. As with nearly everything in my life so far, it's not always what I had in mind but it sure turns out beautifully.

An update on my treatment. I had my second round of the Ipi/Nivo combination on Friday (three days ago) and still no problematic side effects! Two more to go and the combination will be complete and I will have my next round of scans (bite fingernails). Having some confusing pain symptoms - only symptom from the MM (mucosal melanoma) that I have right now is intermittent aching in my pelvis. I can't seem to get a handle on whether that's due to treatment related inflammation or growth but since nobody can really answer that question for me I will chose to believe the former until I know otherwise (and count my blessings that I don't have more pain).

My 'alternative' treatment regimen has grown, yet again. A friend connected me with a local healer who works with herbal remedies and it turns out I have two potentially helpful herbs in abundance in my garden (which could seriously supply a mid-size restaurant in Nashville). Rosemary and sage! Today I created a new 'cocktail' that consisted of said herbs and also a large amount of raw garlic and some lime juice (BOOM!). I used to always avoid garlic because I'm very sensitive to it but I've decided to just jump off the deep end with it and perhaps I'll get used to it (at worst I'll be less likely to attract vampires). The challenge is finding things that won't interfere with my immune therapies and because they are newer, there isn't really any research on this, so I'm just avoiding anything considered 'detoxing.'

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