Still on the Path to NED   November 10th, 2011

Yesterday I spent the day at the National Cancer Institute at NIH getting scanned and poked. The poking started my day at 7:30am with an apheresis to process five liters of my blood (basically, my whole blood volume) to extract white blood cells for future research use and review when the clinical trial I am in ends (which will be once the 118 candidates have all gone through treatment in a year or more). The wonderful apheresis nurses managed to jab me only once per IV (I needed two lines – one in, one out), and even set it up so one of those IV lines could be used for my scan contrast injections later in the day.

I had CT scan first, from neck to knee, and then an MRI of my brain and my liver.

All told I was at NCI for 10.5 hours for these three procedures (they took my blood during apheresis as well). I was beat, so we had dinner at the Tastee Diner around the block from our hotel. Food was decent diner food, but the highlight was the people watching and ambiance.

This morning we had a very nice brunch at the Louisiana Kitchen with friends Mark and Resa – whom we knew from many years ago both from Bonaire and the BonaireTalk on-line community Linda and I had started a dozen or so years ago. We’ve been corresponding frequently in the last couple of months, and it was nice to see them in person.

And this afternoon (I’m being extra wordy because I’m working to build up the tension to the information you are all really interested in) we met with my doctor and medical team to learn what the scans revealed. First, the dietician came in and when we explained all that I was able to eat, and how well my taste buds were recovering in such a short time, she was elated, telling me that I was months ahead of where she expected when I left the clinical facilities three weeks ago.

Next in was the research nurse managing the clinical trial. She was happy to see my progress in terms of eating and fatigue, but cautioned me that in her experience, everyone who has had the radiation so far has suffered significant set-backs after the first two to three months after treatment. She indicated she would be happy if I proved her wrong, but thought it was much more likely than not that I would have a serious crash in terms of fatigue and other symptoms by the end of the year and that recovery would be rough for a bit at that point. Linda and I are both hoping that she’s wrong, since I’m already at the same equilibrium I was at before treatment, at least in terms of being a bit of a couch potato.

And finally, it was time for my doctor. She expressed genuine joy and happiness at how well I was doing physically, indicated that while my blood work showed a few below-normal indications, it was perfectly normal and stable for where I was at in terms of recovery. Then she gave us the scan results: No new growths, and the tumors they had been tracking for size showed an average decrease in size of 4.4% compared to the scans taken a right before my treatment started, and a week before I got my TIL cells. Considering my tumors had a week to grow after that last scan, a 4.4% reduction actually translates to something a little bit more numerically, we believe. And no new growths is excellent news too.

We asked her about the tumors in my thigh that have disappeared, and she indicated they had been too small to measure previously, falling within the measuring margin of error, but indicated this was a positive sign. She also confirmed she could see on the scans that the baseball-size lump I had in my thigh had gone from rigid to mushy (same as we had discerned by feeling the lump over the last few weeks), and appeared to be becoming more cyst-like instead of tumor-like, which suggests that the body is working to dispose of it.

While 4.4% percent may not seem like much, considering how rapid the growth and spread of my tumors had been up through the end of September, it’s an amazing achievement.

My next appointment for scans and meeting with the doctor is set for December 5th & 6th, and that meeting should shine further light on how well my tumors are shrinking and keeping me on the path to NED.

In a related matter, we resolved a problem with our insurance company this week – they appeared to be trying to prevent me from renewing my health insurance for next year – but that has now been worked out and I am renewed for 2012. One of the requirements for renewal (as this policy covers U.S. citizens who reside outside the U.S.) is that we be residing outside the U.S. on the renewal date, which is December 28th. As such, we will be spending the end of the year, and the beginning of next year – with my doctor’s blessing – back home on Bonaire. We will arrive on Christmas weekend and leave a week after New Years. For us, being back on Bonaire will truly be a reason to celebrate. And my biggest wish for that time is that I will not be suffering the extreme fatigue the research nurse warned me about, so that we can spend some time catching up with friends and home.