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.

 

Eating Well and Touching Myself   November 5th, 2011

Okay, so maybe the title is a bit provocative, but enough time has gone by, with enough changes, that I thought I should post an update.

On the recovery side of things, while I am still not at full energy, I do find that my energy levels are going up by a tiny bit every day, and in fact, I’ve not had a daytime nap in a week. I am making sure not to overdo things, but every other day I go for a pretty long (and slow) walk to rebuild my strength and stamina.

The dry mouth is still here, with some days better than others, and my foods still need to be well lubricated (sauce is good!) or moist for me to be able to consume them.

More importantly, my taste buds are healing, and I’m able to taste more and more foods. I still find myself very sensitive to very tart (acidic) ingredients as well as spice (of the chili variety), but am now able to manage most normal foods and enjoy them reasonably well. Black pepper is fine now too. For example, in the last week, we’ve had Indian, Thai, and Chinese foods, and I’ve been able to eat all but the spicy dishes. Plus, of course, the fabulous creativity of Linda and Krystyana have been a key component as well. For example, last night they made 40 clove chicken (I only had one garlic clove, but two large drumsticks with the lemon garlic sauce the chicken was braised in).

I know I am still quite far from getting the full flavor of dishes and foods, but that will all come in time. And considering where I am now, relative to where I was just three weeks ago, it’s a huge world of difference already.

So, onto the “touching myself” aspect of this post…

When I was starting my TIL/TBI treatment at the National Cancer Institute in Bethesda at the beginning of October, I had a number of very palpable melanoma tumors in my right thigh, and the area the tumors for the TIL harvest had come from felt like someone had buried a baseball in my thigh – it was rigid with small lumps around it as well.

Flash forward to the present, and I can only feel (by touching myself – get it?) just one of the smaller tumors (there were over a half dozen) in my thigh, and the baseball shaped mound in my thigh has gotten quite soft as well. Considering that my weight is down to a svelte 200 pounds (down from 225 when I started treatment) – meaning I have lost quite a bit of weight, which should have made the tumors more pronounced if they were not shrinking, this suggests that some aspect of the treatment is working, and working much more quickly than expected. It’s not clear whether the IL-2 or TIL cells (or the combination thereof) are the cause, but either way, Linda and I are pretty jazzed by these rather noticeable early result. We haven’t said anything publicly sooner (although we noticed the tumors becoming less palpable over a week ago) because we wanted to be sure that trend was continuing (and it is). My doctor did tell me last week (after getting my excellent blood work results), that I continue to be ahead of the curve. So here’s to being an overachiever with a type-A personality!

We’re expecting that the scans coming up this next week at the National Cancer Institute will give us some further insight as to what’s happening internally, but outward appearances suggest that I am slowly heading towards NED. And that means being able to going back to living at home on Bonaire on a more permanent basis once again down the road. Woo hoo!