The last three weeks have not been particularly enjoyable, filled with uncertainty, angst, and a modicum of hope that what I was facing was just a minor hiccup in my treatment.

It all started on Monday, November 14th, when my doctor at the National Cancer Institute (NCI) called to tell me that their radiologist had been unable to load some of the images from my brain MRI the prior week when I was at NCI for my monthly evaluation and consult.

Unfortunately, the news wasn’t very good. Turns out that in contrast to what we were told during the consultation, the brain MRI was not clean, but that there were five “mets” (short for metastatic tumors) in my brain – the largest being 6mm (the size of a small pea) across and on my cerebellum. The other four mets were quite a bit smaller, with two each on opposite sides of my brain.

I was also informed that since I now had brain tumors (under the assumption they had formed after my TIL treatment on October 7th) I could no longer be part of the protocol (no brain tumors allowed in the protocol), meaning no more free monthly evaluations at NCI (which made the costs of CT scans and MRIs completely free to me – no insurance involved. I was therefore being remanded back to the care of my oncologist at Massachusetts General Hospital (MGH).

While we really like my oncologist at MGH, the news was a real blow – a stunning reminder that with melanoma, nothing is predictable, and that there appears to be no simple, straightforward path one can rely on in treatment, even with TIL. I would have thought my initial reaction would have been depression, but in fact it was sheer anger at this stupid melanoma and its inability to stay put and let itself be exterminated by my TIL treatment.

We made contact with my oncologist at MGH (it turns out that the immunotherapy group at NCI regularly consults with him as an expert in the field of melanoma treatment) to figure out what to do next. After reviewing our notes we were thinking that the brain tumors could have formed in the three weeks before my TIL treatment started which gave us hope that the TIL treatment might be shrinking the brain tumors in which case I could be readmitted to care at NCI. In meeting with the brain-radiation oncology specialist at MGH the following morning, we came to an agreement that I would get a brain MRI in about three weeks to see if the tumors had shrunk. If they had, I would be remanded back to NCI. If they were unchanged, we would monitor with a later brain MRI. If the tumors had increased we would go ahead with whole brain radiation.

That MRI took place last night, and this morning Linda and I met with the radiation oncologist. Turns out there was a fourth option we hadn’t considered, namely tiny little hemorrhages (bleeds) at the location of the previously found tumors, along with “new small regions of hemorrhage and in areas of previously uninvolved brain” (from the doctor’s notes), suggesting that there were tumors that were too small to be seen in the MRIs, but having an impact nonetheless. This apparently is not uncommon with melanoma mets in the brain.

Also, there was certainly no shrinkage in the previously detected tumors, and there might have been minuscule growth (which appears to be within the margin of error the MRI machine, so that’s not entirely definite either).

These factors, especially the hemorrhages, pretty much necessitate the whole brain radiation, which will stop any active bleeding (the MRI can’t distinguish between active and non-bleeding hemorrhages), as well as kill all the cancer cells in the tumors and elsewhere in my brain. That means I will likely (very high probability) be free of melanoma and bleeding in my brain after the whole brain radiation. There will be another brain MRI sometime in February to confirm.

Note too that the whole brain radiation apparently has no impact on TIL cells outside the brain, and it’s unclear if it has a negative impact on the TIL cells in the brain. Seeing as TIL cells are white blood cells, it’s unlikely, but unknown.

As a result, I started a 13 day course of whole brain radiation today at dose of 2.5Gy per day (takes all of 30 seconds for the two exposures needed, but about five minutes for set-up and tear-down). I had to get a form fitted mask made to ensure my head would be perfectly aligned to avoid irradiation of non-brain parts (eyes, nose, etc.)

The custom face mask made using my face - the mesh allows for easy breathing

The custom face mask made using my face - the mesh allows for easy breathing

 

I will need to go into the radiation oncology facility at MGH every week day through December 15th for this radiation treatment. While the treatment is quick, if the Linac device I am scheduled for (there are three there, and I’m assigned to a particular one for the duration of my treatment) is backed up with other patients, I may have to wait up to an hour for my radiation treatment.

Me with my custom mask on, getting ready for my first dose of whole brain radiation

Me with my custom mask on, getting ready for my first dose of whole brain radiation

The side effects of this treatment are likely to include hair-loss – Hah! – I have that one covered! (see photo below). In my case it will mean that my hair will take some months longer to grow back. The other likely side effect is fatigue, which would be layered on top of my existing fatigue, which has not been significant so far. The radiation oncology doctor indicated that some of his patients are prescribed Ritalin to help overcome radiation induced fatigue.

Jake Self-Portrait - November 16, 2012

Jake Self-Portrait - November 16, 2012

Still missing from the above is a discussion with my melanoma oncologist about what to do about follow-up body scans to see how the TIL treatment is working, since NCI won’t be providing these any more (meaning, by the way, that our planned trip to Bethesda next week no longer exist). Another discussion that will need to take place is whether it’s a good idea for me to have some other sort of systemic treatment, like ipilimumab (Yervoy). Those discussions should take place in the next six weeks.

For those of you wondering, our trip to Bonaire at the end of the year, necessitated by the requirements of our special medical insurance for U.S. citizens who are foreign residents, is not affected by the radiation treatment. I’m hoping the fatigue won’t interfere with the enjoyment of the trip back home.

So, while these dramatic changes are frustrating, the fact there is a plan that will deal well with my brain mets in place gives me hope that we can move back to Bonaire full-time in April 2012, with my taking occasional trips to Boston for appointments while finding a guest bedroom to crash in with family and friends during my visits.

Some other miscellaneous notes that might be of interest to those of you following things more closely:

Dry Mouth Update – My dry mouth continues to improve. Sleeping with the dry mouth is no longer a real issue. If things get too dry I use a dry mouth mouthwash to un-dry my mouth. I can now taste and enjoy a pretty wide range of flavors (within the bounds of my neutropenic diet). Exceptions are spicy (chili pepper spice, like cayenne) foods, and foods with high acidity. White wines are unpalatable at present because of this, and red wines are drinkable but not as enjoyable yet as they were before my treatment. I don’t suffer a lack of appetite, although my shrunken stomach has physical limits as to what will fit inside.

A New Richter Cousin – One of the nicest unexpected side benefits of my melanoma treatment has been the discovery of a heretofore unknown Richter cousin. I first met Carolynne at the PET scan waiting room at MGH early this past August, and we got to talking about our respective melanoma occurrences and spread and the fact we both had the rarer NRAS gene mutation instead of the more common BRAF mutation. When I came back from my injection with the radioactive isotope, she and her husband Mark were gone. But a month or so later Carolynne had found this blog and sent me a message to explain her maiden name was Richter. With my father’s help, we found that our family tree shares an ancestor from the mid-1800s, and that her next generation ancestor after that was the brother of my similar generation ancestor. Look at the picture below and judge for yourself. The photo comes from when Carolynne and Mark came to visit us for a few hours of social and melanoma chat about a week ago. Definitely a major highlight of November for me.

Richter Cousins

Richter Cousins

Weight and Girth – My weight post-treatment has been holding steady at around 200 pounds. Sadly, a lot of that weight loss is muscle tissue, and not the roll of chubbiness around my mid-section (though that has decreased too). I have not weighed that little since late junior high school or early high school, when I was also a number of inches shorter than I am now. My waist is down to around 32″, the same as that of my 14-year old son Bas.

Neutropenic Diet – I am presently more than half-way through the three months that I need to be on my neutropenic diet, which ends on January 6th. I will be looking forward to my first medium-rare bone-in rib-eye after that date, with a green salad. Both are things I am not allowed to eat at present. I’m also planning for Bobbe Jan’s ribs and fries on January 6th, my last evening home on Bonaire before flying back to Boston. Yum.

That’s it for now. More when notable stuff happens, and apologies for not posting sooner, but we didn’t want to increase the amount of anxiety in our families and friends until we knew what was happening.