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.

 

Day 3 – Slow Recovery   October 9th, 2011

After Linda and the kids left last night, my plans for a restful night kind of came to a close with the introduction of a high fever and chills. The fever lasted most of the night and finally broke this morning. I kept telling myself that fever was a sign of the on-going battle of TIL vs. evil cancer cells, so in a way it was a good thing. And my doctors later confirmed that probably was the cause too.

However, it should be noted that the TIL attack is something that goes on for weeks, and it’s generally not clear until the second of post-treatment scans (which would be early December) of how well the treatment works. So feeling tumors from the outside to see if they have gotten smaller is something of a pointless exercise, at least this soon after the TIL was administered.

From the comments that Linda’s post received yesterday it might not have been clear that the 5kg of water weight I needed to drop was to ensure proper organ function, as much of that weight was in my organs (such as my lungs), and not any sort of vanity. I’m close to half-way there, and my lung capacity seems to reflect that.

The other side-effect of treatment that has been increasingly frustrating is that I have “dry mouth“, meaning that my salivary glands simply don’t turn on. So, to eat most things that don’t have a thin gravy of their own, I have to keep my mouth lubricated with water in between bites, and sometimes combine the two. That turns something like a protein bar into mushy cereal – not a great texture sensation.

A related symptom of this whole dry mouth situation is that my ability to taste has gotten terribly screwed up. Certain foods have no flavor (like Chef Boyardee single-pack macaroni and cheese – though Linda says it doesn’t have much flavor to start with), foods that should have quite a bit of flavor (Chef Boyardee single-pack Beef-a-Roni) are bland, while for other foods, even a few flakes of black pepper can make the dish inedible. I can taste sweetness to some extent though, so I’m thinking once I’m back in Boston I may have to work my way through Ben & Jerry’s collection if it looks like ice cream is edible to me.

I also learned that the carbonation from carbonated beverages is actually painful to my mouth.

I have some various dry mouth rinses, gels, and sprays – all of which work, but only temporarily, and being a mouth breather, things get dried out pretty quickly.

Hopefully my salivary system and tongue will heal up soon enough (it could be months) and I can start enjoying food again as opposed to having it be a torturous necessity for survival.

Perhaps I should be glad that this is the only side-effect from treatment that has clearly manifested itself, as I’ve had virtually no nausea (although in part that could be contributed to by the thrice daily infusions I get of Zofran), and while my energy levels are low (lots of naps), I don’t seem to actually be suffering from extreme fatigue (again, knock on wood). This may still change, but I’m hoping it doesn’t.

Today has been mostly spent connected to my IV drip system, first getting potassium phosphate to replenish my electrolytes (a four hour drip), then followed by two units of blood (two hours each – just finishing my second unit now) to boost my hemocrit and hemoglobin counts. I may also get more platelets tomorrow.

The family was with me most of the day, and during the points I wasn’t napping we took advantage of the rather decent WiFi connection here to watch a couple of streaming TV shows from Amazon (and yes, I have an Amazon Fire on order :-) ).

They (the nurses here) expect I will be under their care for another ten days or so, so my immune system can get built up enough that I can safely (with face mask on) travel back to Boston for a couple of weeks before coming back down for my first post-treatment scans in early November.

One ambling day at a time…

 

I have successfully finished being exposed to 1200cG (centi-grays) of radiation over the course of the past three days thanks to an awesome team of specialists. And I even have a certificate to prove it!

The wonderful certificate of appreciation I received this afternoon after my sixth and final course of full body radiation. Even got a hug from my radiation nurse!

The wonderful certificate of appreciation I received this afternoon after my sixth and final course of full body radiation. Even got a hug from my radiation nurse!

And still, beyond a dry mouth, and a bit of fatigue, not much wear to show for all that, yet. Hopefully the radiation did its job in killing off all my bone marrow – that’s what the main purpose was of getting the radiation.

The oncology radiologist I spoke to this afternoon after my final treatment commented that I went through the radiation treatment amazingly well, and while he doesn’t know exactly why, perhaps my relative youth, good health, and good energy levels might have helped. He also indicated that there is a chance that some of my organs may have been damaged a bit (which would be fixable or heal-able), but only repeated testing (urine and blood samples) will determine if any such situations exist. So far so good (and please continue knocking on wood – it’s definitely been helping.)

On to what’s next…

One of my favorite movie quotes is from the 1980 version The Blues Brothers:

Elwood: It’s a 106 miles to Chicago. We got a full tank of gas, half a pack of cigarettes, it’s dark and we’re wearing sunglasses.
Jake: Hit it!

There is the absurdity of wearing sunglasses at night, but in reality is it a checklist in the pursuit of a goal. In Jake and Elwood’s case, that is to deliver concert proceeds to a tax collectors office in Chicago, while being sought by the police, and an extremist group.

My current version of this movie quote is:

Jake: I’ve just been radiated and chemo’d. It’s five more days until the treatment is over. I have a couple small bags of Haribo gummi bears, a full jug of water, no idea what I am facing and am covered by a fluffy duvet.
Jake (speaking to myself): Hit it!

Okay. Maybe not as memorable, but to me it has the same feeling. And in my case the ultimate goal is NED – No Evidence of Disease.

To get there I need to get through the next five days of treatment with IL-2 in the form Aldesleukin. From what everybody has said, intensive IL-2, which will start to be administered few hours after my TIL cells are administered tomorrow in order to super-charge the TIL cells and help them achieve their cancer-killing task. (But, as a caution, it will not be clear for at least a month how effective they were, and may take many months to verify total shrinkage and disappearance.)

After the first administration of IL-2 I will continue to receive 15-minute infusions via IV every eight hours until my body just cannot handle it anymore (based on physiological responses related to breathing, organ function, and also on mental function). There are a maximum of 14 doses of IL-2 that will be administered, but my nurse has never heard of anyone that has even gotten close. IL-2 comes with fevers, chills, rigor (shaking during chills), and all sorts of other pretty scary things – more details in the fine print available here.

Whenever it is that my IL-2 treatment ends, I will be a bloated wreck for a bit (an IL-2 side effect is the release of stored water in the body being pulled out of its regular places, resulting in a 20-30 pound “bloat” – and yes, I will have someone take pictures of Puff Daddy Jake :-) ). But I’m betting on being a bloated Jake on his way to NED.

And, speaking of photos – I know I have been remiss in providing images with posts lately, so below are several images to captured over the last week:

Linda and the kids move in to my hospital room to keep me company. Here everyone was getting their wifi connections working. Honestly, they really do pay me a lot of attention when I'm not sleeping

Linda and the kids in to my hospital room to keep me company. Here everyone was getting their wifi connections working. Honestly, they really do pay me a lot of attention when I'm not sleeping. We play games, watch movies, talk, and even torture the kids with doing their more traditional forms of schoolwork.

My IV tree the night they were administrating my first dose of Cytoxan to kill my current immune system. Festive!

My IV tree the night they were administrating my first dose of Cytoxan to kill my current immune system. Festive!

 

Cyclophosphomide a.k.a. Cytoxan, close up.

Cyclophosphomide a.k.a. Cytoxan, close up.

Linda and the kids enjoying a take out meal which I got to try part of with doctors' permission. I managed two wings and two fries before I was full.

Linda and the kids enjoying a take out meal which I got to try part of with doctors' permission. I managed two wings, a small chunk of dark meat, and two fries before I was full.

 

Here I am in my hospital room working on this blog post about Day -1, after finishing my final radiation treatment. That's Renaissance Bear next to me.

Here I am in my hospital room working on this blog post about Day -1, after finishing my final radiation treatment. That's Renaissance Bear next to me.

 

 

Day -2 – About Halfway There   October 4th, 2011

One year ago yesterday, Linda and I were in Roses, Spain, having the best meal experience of our lives under the personal care of Chef Ferran Adria and his now closed (but still worshiped) el Bulli Restaurant.

It was a lunch event like none other, involving over 35 course, meeting four new foodie-friends-for-life, and it took a mere seven and a half hours (and ended early only because our prescheduled taxi service was getting impatient). And the wine pairings were out of the world – perfect when sipped with a bite of the paired food. Though, Ali (one of our new friends) and I did more than sip our way through a fabulous Alvaros Palacios 2004 Priorat.

As I sit here tonight at the National Cancer Institute in Bethesda, Maryland, working my way through dinner – consisting of peanut butter, jelly, and cream cheese in a low carb tortilla, and needing frequent enough sips of water moisten each bite enough to prevent me from choking on the dryness (since I have virtually no useful salivia production left at the moment), I can’t help but wonder at what a bizarre but still amazing year it’s been. Those of you who know me know I enjoy exploring cuisine and culture – from eating guinea pig in a hole in the wall in Quito, Ecuador, and street food in Fiji and Kowloon, to enjoying the cuisine of top chefs in New York, Hong Kong, and Boston. And yes, even enjoying fried butter at the state fair.

I see my salivary problems (and I have been told that those will be accompanied by loss or change of taste) will last for some time (in addition to the three months of neutropenia). But in adversity, there’s challenge, and being a devout experimenter in the kitchen, I am sure I can come up with some foods that will overcome my limitations and provide both enjoyment and education, once I’m physically able to spend time concocting. The time spent recuperating will also give me a chance to figure out how I might want to change my approach to cuisine (which in the past was to treat it as a visual as well as olfactory art form) in use in the fine art food photography I had started work on last year.

I lead in with the above as a sort of precursor that I’m doing about the same as last night and don’t have much more to say.

I am now totally neutropenic – with nary any neutrophils left to count in my blood. Other symptoms from yesterday persist: Dry mouth, swollen jaw, slight tiredness, and – how to politely put this – intestines that are a bit more aqueous than they should be. But all those are under control.

Considering I just went through another two rounds of total body irradiation (TBI) today, that’s not bad at all. No sirree. I’ve been informed that I’m not the first to have charged through the first six days into the treatment so well, and that folks here remember two other prior patients similarly bypassing the most common and debilitating side effects. The usual trend tends appears to be towards a lot more unwellness early on and then staying that way for the course of treatment and beyond.

So please cross fingers and knock on wood for me some more that I can buck the side effect trends further after tomorrow’s final two doses of radiation. The side-effects induced by those two final treatments will not immediately appear, and might take a few days to manifest. Again, all I can do is wait and see what happen, and hope for the best combination of events (and ask the same of you).

For a recap, Day -1 (tomorrow) is the last day of radiation. Day 0 is, well, THE DAY. It’s when I get my billions of TIL cells injected into my system. I have a carefully thought out music playlist created (with some help from my friends) that I will play to help encourage them to hunt and kill all those nasty growing melanoma cells in my body. I hope to publish that on Thursday before I start IL-2 later in the day, as I understand that once IL-2 starts I won’t be in shape to do much of anything at all for five days.

To N.E.D.!

P.S. Any plans to give blood yet? If not, please think about it.

 

My neutropenia continues. I’m down to an absolute count of 54 neutrophils per cubic millimeter of blood, and at this rate I without doubt will be down to as close to zero as is humanly possible before my TIL cells get administered on Thursday.

Until then I’ll be getting a whole bunch of full body radiation. I went through my first rounds today – the first around 8am and the next around 2:30pm. A similar schedule will continue tomorrow and Wednesday.

Having also just had my last dose of fludarabine administered about an hour ago, I am now officially done with the application of chemotherapy and am moving on to deal with the side effects.

My energy levels are pretty darn good, and I’ve not had nausea (everyone, please find wood to knock on!). And my sporadic fevers appear to be dissipating.

I have been told that having Linda take me for daily walks around the amazing Hatfield Center I’m in here at NIH has been very helpful for both the energy levels and the fevers, although I have to wander around with a face mask (required because of my neutrapenia) and gloves (additional paranoid measure on my part). However, in that costume people rapidly make way for you if you generate fluid sounding hacking noise. People are pretty funny in how they respond to someone in a face mask.

I have also had some light-headedness today, but I’m told that the Adavan I’ve been told to take before radiation is the cause.

So, all that’s the good news.

Less pleasant effects are appearing however, including intestinal distress (requiring three Imodium-equivalent loperamide tablets, to, um, stem the flow) and bowels which are trying communicate audibly in a language I have yet to parse (I think it’s a dialect of Wookiee).

I have also developed a fair bit of pain at the base of my jaw, on both sides. Makes chewing painful, and the outside of the jaw is rather tender.

And from a continued oral perspective, I now also find myself with salivary glands that don’t really produce any saliva except for some thick mucus, sometimes. So, at times, when I try to eat anything my mouth gets all gummed up. I need to keep moistening and loosening things up in my mouth with lots of liquid – water seems to work best, flavored drinks and carbonated ones the worst). At other time with dry mouth, eating anything without its own liquid (like the protein bar I am masticating now) is like chewing on sawdust. Ugh. And if you don’t hydrate the food in your mouth, you could choke on it. Death by dry cracker. Not a pretty way to go, I’m sure.

The source of these side effects would tend to lean towards the chemotherapy – still messing with my system residually, as the radiation has only just started. None of the doctors have been able to pinpoint the actual source so far, and past consults have indicated that both chemotherapy and radiation can contribute to dry mouth and jaw problems, as well as diarrhea.

It is becoming clear to me that it is not for me to point fingers at a particular treatment component to find blame for the individual side effect, but instead just accept these side-effects as they come along and find the best way to deal with them, and hope they go away soon.

The only thing that appears 99% certain is within two week I will have at least lost the hair on top of my head, but as one of my nurses points out regularly: “Jake – with you nothing is predictable.”

Let me close with a quote out of a fortune cookie Bas got last night: “When you have no choice, mobilize the spirit of courage.” How apropos, eh?

So onward to tomorrow’s unpredictability with the spirit of courage…

 

If you have a short attention span, here’s the big news: My Tumor Infiltrating Lymphocyte (TIL) with Total Body Irradiation (TBI) treatment starts next week, on Tuesday, September 27th.

The long version, including historical information, follows below.

My week at the National Cancer Institute (NCI) has gone quickly, but not without some complications.

On Wednesday, I got my scheduled stem cell apheresis, this time through my newly installed Hickman catheter. It was wonderful to not have to get stabbed again with needles for this process, especially as the bruising I incurred last week for the feeder apheresis are in full bloom with all sorts of color.

But the stem cell apheresis on Wednesday was pretty tiring too. As I later found out, part of this was because the process caused my magnesium, potassium, and platelet counts to drop significantly. Contributing to this was that this apheresis also required that 30 liters of my blood (about five time the blood supply in my entire body) to be fed through the centrifuge over a six hour period.

I spent the rest of the day resting and dealing with a related headache, under the assumption that all had gone well with the stem cell apheresis. However, at midnight, deep into Ambien-assisted slumber, I got woken up and was informed that they did not manage to collect enough stem cells (the minimum required by the protocol is 4 million, but 5 million is more ideal), and that I would need to go through the process again on Thursday morning. No further details were available, but I was given another pair of Filgrastim shots, and put on an IV with potassium chloride to help boost my electrolytes (and potassium levels).

So, yesterday morning I found myself in the apheresis center again, for another 30 liters of blood processing. Turns out that the first day produced 2.6 million stem cells, so not a complete failure. Fortunately, yesterday’s collection produced another 2.04 million stem cells, for a total of 4.64 million cells, sufficient not to require additional vampiration (and delay treatment). Because of the unexpected second day of apheresis, I also had to rearrange appointments with doctors from radiation oncology and from the dental clinic. In each case the doctors advised me on the side effects of the radiation treatment (which are potentially significant). But other then sterility and an increased chance of early cataracts, only these effects are generally transient (but could last for many miserable months).

I fortunately had also learned first hand about this from a couple where the husband had finished treatment about two months ago – they learned about be from Melanoma Mom Jamie’s blog, and were wonderful enough to look me up at NCI to see if they could help with any questions I had about the process. Thank you so much Pam and Joe!
In any case, the anecdotal evidence suggests that the aftermath of TBI is well worth it in terms of increased probability of response to the treatment. The amount of response benefit is actually what this clinical trial is designed to help define.

Yesterday, I was also told that I had excellent teeth and dental health. I think that was the high point of my day. The day ended with more potassium infusions, and six units of platelets, both of which helped my blood counts creep towards normality.

I wrapped up my stay this morning with a simulation scan to prepare for my full body radiation treatment (which goes on twice a day for three days, starting October 3rd).

The end result was that I now have a bunch of lines on me, drawn with a permanent marker (fortunately not really permanent), with the critical markings covered by waterproof tape. The lines will be used to align my body with respect to the photonic radiation emission equipment. By the time I’m done with the three days of radiation, my body will have absorbed 12 Grays of radiation, and my lungs only 6 Grays. The Gray is a unit of measure that relates to “rads”. It is a significant dose for full body exposure, but small compared to localized radiation.

As I already indicated in the abbreviated version of this blog above, I learned that I have been scheduled to return to Bethesda on Tuesday, September 27th – so a mere four days from now. The first day will be spent getting me all set up, and I start my five day course of chemotherapy on the next day, followed immediately by the three days of radiation.

Again, the whole purpose of these two components of the overall treatment is to kill my immune system as well as the cell generation in my bone marrow. The idea is that the resulting environment (no immune system) gives the TIL the best possible chance to do its thing – namely kill all those nasty melanoma cancer cells that are still intent on spreading throughout my body, without interference from my own normal immune system.

After the TIL cells are administered, the stem cells will be administered, then I get the mind numbing IL-2 treatment to boost the power of my TIL and stem cells, and then there’s recovery…

I will stay at NCI until it is deemed safe for me to be exposed to much of the world, namely when my immune system has recovered enough to ensure that I will no longer be in danger of infection from the most minor germ. Right now, my return date to Boston, as a bald, easily nauseated, and very tired person, is scheduled to be October 20th, but that date is subject to change based on my recovery, and the on-going entropy that is part of my life these days.

I want to extend a very special thanks to Jamie and Jeff for letting me be part of their nightly take-out dinners during my stay at NCI. Thank you both for your friendship and hospitality.

The few days I have in Boston (I am en route now) are going to be spent with family. In fact, my parents flew in from the Czech Republic yesterday – the original plan being that we’d be spending a couple weeks together. However, the melanoma train stops for no one, so we’re down to only a few days together. But that’s okay, because my train’s destination is NED – No Evidence of Disease. And a pig roast at our house in Bonaire in the spring!

Note: I want to mention to those folks who have been depending on e-mails from me for notification of new blog entries, I will no longer be sending out those e-mails during treatment. And I will not be posting notification on Facebook or Google+ either. My upcoming posts, throughout treatment, if I can manage them, will be a lot more succinct than my usual posts, and to see them you will have to remember to check back here at http://www.jakestake.tv every so often to see what’s new.

 

Thanks to inspiration from a discussion with my friend Ellen Horne at WNYC, I’ve decided to try to complement my written blog with a video blog. Should you find yourself bored by reading my missives, an abridged version of this written post can be found in the video blog, accessible below.

I just returned from several days in New York City, where we dined very well at mostly excellent restaurants, explored a couple of museums, attended a wonderful musical, and met up with friends we hadn’t seen in a while (and missed several others, unfortunately).

It’s not clear that the trip would have been as enjoyable had I not had my Sylatron immunotherapy treatment for my melanoma cancer suspended due to an alarmingly low white blood cell count (see the previous post). I also took the step last Friday to try acupuncture as a way to reduce both the fatigue and appetite loss the Sylatron had induced. I believe the combination of the acupuncture and the lack of a fresh dose of the drug last week allowed me to eat my way through my New York stay.

At the same time, I found that my energy reserves were still not the best, and that I required daily naps. The realization that I might need regular blood tests during the course of my many month or even multi-year treatment with Sylatron, along with the inherent side effect of fatigue, led me to another conclusion, supported by my doctor. Namely, that my plans for an expansive three month trip to Asia and Australia this autumn would not be really viable. So we’ve unfortunately had to cancel our planned tour to Vietnam and Cambodia in November, and stopped all of the related trip planning to the other side of the world. All to be revisited at some future date, hopefully.

This decision goes deeper than might be apparent, as it is a sign of things to come, namely the inability to plan grand and lengthy things because there is so much uncertainty, even in small things, beyond a certain distance in time.

Mark Beckelman, the recently deceased mentor and friend I mentioned in my prior post who gave me hope when things seemed bleakest after my diagnosis, shared with me that he was happiest when he was living in the moment and living his life. I have come to learn that “living in the moment”, as Mark described it, is pretty much a necessity when you have a life threatening disease, especially where the treatment is fluid, affected by physiological factors as well as chance. Planning for more than three months into the future probably falls outside of “living in the moment”, so, at least for now, I will try to limit my planning to the nearer term, and in smaller chunks that can be more realistically achieved even when other factors change.

On the bright side, as we have proven to ourselves with this week’s NYC trip, I can travel closer by (this hemisphere), and will therefore, hopefully, be taking short trips around North America, including a trip to the San Francisco area in late October which will include (fingers crossed) a dinner at Thomas Keller’s The French Laundry, and visits with many friends we’ve not seen in a long time. My radiation treatment should be over by then (more fingers crossed), and hopefully I will fall into a more manageable routine with less external variability.

With respect to my treatment, I went in for a blood test today, and my white blood cell count had returned to a low but manageable 2700 cells per cubic milliliter (up from 1900 early last week), and my oncologist said I should resume the full induction dose today, not a reduced dose as I was previously told. I will get tested again in about 11 days, as part of a meeting I have scheduled with him the afternoon of August 1st.

At that meeting we will also go over the results of my next set of scans, scheduled for next Wednesday, which will hopefully show that I have not had any visible spread of my cancer to the rest of my body.

These scans, which will take place every three months for the next couple of years after detection, and then get spaced out to being semi-annual or even less frequent over time, are an event of high anxiety for every cancer patient I have spoken to or whose words I have read. They serve as a double edged sword, as the hope is that the scans will be clean, reaffirming that the cancer treatment has worked (and is working), but at the same time they could be the harbinger of really bad news, namely that visible tumors have appeared.

This will be my second set of scans since my diagnosis, and I’m anxious and hopeful that I will hear that my scans are clean (again) when I get the results back from my oncologist on August 1st.

I also meet with my radiologist next week to start planning my radiation treatment for trying to kill any cancer cells that might remain in the vicinity of my excised lymph nodes in my right groin. Assuming nothing unexpected happens between now and early August (like bad scans), this will result in more scans to create a simulation of my treatment areas as well as a body mold to hold me firmly in place while a computer controlled radiation emitter accurately zaps only those parts of me that need the treatment.

More on that in my next post, as I learn about the process.

 

While I wasn’t particularly concerned about the earth being ravaged by earthquakes yesterday as part of the widely publicized rapture, I did find myself relieved that nothing of earth shaking significance happened anywhere. I also find myself pitying the thousands of Rapture believers for whom reality contrasted sharply with their fervent beliefs and expectations in what was going to happen to them. It’s a lesson that those of us who have been diagnosed with cancer can learn from as well. And before you suggest I’m being negative, let me point out there’s a difference between hope and expectation. I hope and wish that I will live a long time. However I limit my expectations to the near-term, as that is all I can judge and evaluate.

Part of the reason for limiting expectations is that cancer in general is the result of a mutation, and this cellular mutation exists and adapts in a very Darwinian fashion. Much as we try to kill the cancer cells, the cancer cells are trying to survive. So, while surgery and treatments may eliminate virtually all of the cancer cells in a body, there’s no proven, consistent way across all patients, to completely eradicate all residual cancer cells in a patient. In some cases, it works out, but the statistics and probability of complete “cure” vs. almost guaranteed relapse vary based on the type of cancer involved. According to “The Biology and Treatment of Cancer”, there are around 200 different kinds of cancer cells identified so far, with most unique enough to require targeted treatment. And it’s not uncommon for cancer cells to mutate further during some chemotherapy treatments and become resistant or immune to those treatments, requiring a new one to be applied or even developed (from “The Emperor of All Maladies”).

I understand from friends who have and have had cancer, as well as from my readings, that the stress and anxiety that surrounds the regular scans they have to see if their cancer has returned is high, because, of course, it could signal having to go through a whole new round of procedures with an uncertain outcome. And for better or worse, after my upcoming treatments are complete, I too will be victim to a (hopefully long) life of uncertainty, especially as my form of melanoma, which I’ve been told is “nodular melanoma” – a very aggressive form, evidenced by the progression from nothing to multiple tumors as large as 2.2cm in my lymph nodes in just four months, is known for a not-insignificant rate of recurrence. Statistically, because I also had cancer cells appear outside the capsule of a lymph node (i.e. extracapsular extension), that also increases the likelihood that I will be revisited by melanoma at some point in the future.

A new friend, who was diagnosed with melanoma about five years ago, but has recently had a relapse with complications, explained to me that he and his wife found that the best way to cope with the impact of the disease on the mind, soul, and body was to live in the moment, and live one’s life – something which he says is not always easy when you are dealing with your own mortality. My piece on priorities a week ago kind of brushed on this idea, but I’m still coming to grips with the idea that I perhaps should not be making substantial long term (multi-year) commitments, which is causing me to reevaluate whether or not I want to continue pursuing my Master of Fine Arts in Photography degree (which will take another 3-4 years of time, nearly full time), or simply charge forth and spend that time in a more intensely productively fashion.

So, my future is a perpetual work in progress, taken a day or a week at a time.

The Fog of Cancer Therapy

In order to be true to the title of this post, namely the various “Fogs” I am experiencing, I would like to share both updates and current perspectives.

Last week I had my first meeting with the clinical oncologist under whose guidance I will be receiving my post-surgical cancer therapy. As I discussed previously, the purpose of the surgical lymphadenectomy (also referred to as a “complete lymph node dissection”) I had two weeks ago was to try and surgically remove the cancer from my lymphatic system before it could spread further, or more realistically, as much of it as possible. Cancer is insidious because it is a cellular mutation, meaning that if even one cancer cell (which is a very tiny, microscopic entity indeed) is left behind, over time it can multiply and spread. Using a macro-level procedure like surgery, while potentially good at removing larger aggregations of cancer cells (usually in the form of tumors), is not great at the cellular level for the simple reason that a surgeon can’t see and distinguish such cells.

That’s where adjuvant therapy comes into play. After surgery is over, additional steps are taking to try and destroy any vestiges of cancer that may still be present. There are two type of post-surgical treatment to be considered – localized and systemic.

In the case of my melanoma, the clinical oncologist suggested that both localized and systemic treatment be applied. The localized treatment would be via radiation, specifically in the area where my lymphadenectomy took place, namely my right groin region. The systemic treatment involves drugs which would be applied regularly to fight any cancer cells that might be left anywhere in my body – in the whole system (hence “systemic”).

The clinical oncologist discussed a number of options with me, including the stock treatment for stage III melanoma patients, namely Interferon-α, a new form of Interferon-α recently approved by the FDA called Sylatron, a late stage drug also recently FDA approved called Yervoy (ipilimumab), and some other experimental options via clinical trials.

Yervoy has the issue that it has not had any studies done yet for Stage III melanoma patients – only late state, Stage IV (for which it was successful as these things go). That meant that, considering the roughly $130,000 price tag for a four-course treatment of Yervoy, insurance would not cover the cost, nor was there necessarily any reason to believe it would even have any effect on Stage III melanoma – it might, but it also might not. The doctor mentioned that there was a clinical trial under way now for Yervoy in Stage III melanoma patients, but that it was a placebo-based trial (meaning that some participants would receive Yervoy, and the others placebos), and the results wouldn’t be known for years (since in Stage III there are no tumors to measure to determine effectiveness – it would be solely based on relapse timelines). Furthermore, Yervoy has potentially serious side effects, including liver disease and even (in very rare cases), death.

My wife Linda and I had discussed the possibility of clinical trials previously – which are basically where someone volunteers to be a subject in an experiment in the hopes the experiment is successful in producing a positive result, as compared to some sort of baseline. That baseline can either be a group of patients in the trial using an established treatment, or alternately, being given a placebo but being told it is the experimental drug. I have a tough enough time leaving things to chance, so the idea of being part of a clinical trial where there was a chance I would get a placebo and no treatment just was not for me (never mind that Linda would have vetoed any such participation as well because of the uncertainty).

Seeing as the Yervoy and other clinical trials currently available were placebo referenced, that ruled those out as options.

I had already known from my research that Interferon, which has been a standard Stage III melanoma treatment for over a decade, would be the most likely option for me, even though its side effects, while not generally harmful, are pretty miserable. Interferon works by boosting the immune system, with the hopes the immune system will then be better able to eradicate melanoma cancer cells on its own.

For many Interferon patients, the primary side effects are fatigue and flu-like symptoms – worse during the initial month of daily 90 minute long IV infusions of the drug, and a bit better during the subsequent 11 months of thrice-weekly self-injections. I’ve learned that it’s not uncommon, due to the impact of these symptoms for people to end their treatment early because they just cannot stand the physical burden any longer. Regular Interferon, because it is in effect a naturally produced protein, is rapidly absorbed in the body, with all traces gone shortly after infusion. So the body has this big spike of Interferon at the time of injection or infusion, and then spends time trying to get back into equilibrium until the next application – so large peaks and troughs.

The recent approval and release of Sylatron appears to provide a more manageable solution to Interferon side effects. Sylatron is still the same type of Interferon as the traditional treatment, but encapsulated in such a way that it hangs out in the body for a much longer time. In very simple terms, you could look at it as similar to getting your aspirin or acetaminophen in a time-release form. This means that the extreme peaks and troughs are no longer present, and the body can better adjust to the sustained use of the Interferon. The flu-like symptoms and fatigue are still there, but not as intense in most people.

Also, because of the persistence of the pegylated Interferon, the dosage and application is less intense as well. Sylatron is applied weekly, and during the first two months, a higher dose is used, after which a lower stable dose is switched to. All of these can also be self administered. The trial in Europe in which Sylatron was used was intended to be a five year treatment, but the average time patients continued with the Sylatron injections was around 14-16 months apparently, but with long term relapse rates which appear to be better (lower) that traditional Interferon, with the added benefit that people were not as sick and, in fact, were able to live mostly normal lives during treatment.

The end result of the first consultation with the doctor was to confirm (as I had previously hoped) that my best course of treatment would be to go with Sylatron as my systemic treatment.

Assuming my insurance company doesn’t set up any roadblocks, I should be able to start my adjuvant therapy in early June after my (damn) drain has been removed, and all my healing from surgery looks good. My next appointment is at the end of the month to try and narrow things down further.

The Fog of Radiation

So, with Sylatron as my systemic treatment determined, the next thing to deal with was my radiation therapy. There has been some literature which has suggested that radiation therapy is not particularly effective for melanoma, but on the flip side, it has also not been shown to be ineffective. What I was advised was that in situations where there was a fair chance of residual cancer cells, such as my extracapsular extension and activity, radiation therapy’s benefits outweighed the risks.

When you’re faced with the potential of relapse at some point down the road, you definitely find yourself more inclined to do anything you can which has a decent chance of postponing when that point will be, and thus I found myself quite willing to go ahead with the treatment.

After a consultation on Friday with the radiologist (who specializes in oncological treatment via radiation), I feel pretty good about the process.

First, let me detail the side effects of localized radiation in my right groin region:

  • It will likely cause sterility, preventing me from fathering any more children. Not a worry – I’m quite happy with the two I have fathered naturally (Krystyana and Sebastian), and my two “adopted” children, Aisha and Chip.
  • During treatment it will cause a light burn and sensitivity on the skin’s surface in the irradiated region. This can be treated with creams.
  • I may permanently lose some pubic hair. May look strange, but other than nurses, doctors, and my wife, and myself, no one is likely to see that, and if they do, it would create an interesting point of discussion.
  • I may end up with darker skin in the same area as treatment. Hmm. Let me think – skin discoloration or leaving cancer cells behind in my body to grow and wreak more havoc? Yeah. I’ll go with skin discoloration.
  • May increase incidence of lymphedema – swelling in my leg due to excess accrual of lymphatic liquids. This can be a real hassle, but the doctor pointed out that there are trained massage therapists who specialized in lymphedema therapy, and the use of compression stockings (I’m wearing one now) can mitigate the problem somewhat. I can certainly work with regular massages (although Linda had to ruin the warm and fuzziness of massages by pointing out that they could be painful, like a deep tissue massage can be).
  • Could undue any healing that is still going on. This is a real potential problem, but with a practical solution, namely not starting my radiation therapy until later in the summer.

Ultimately, the decision that both doctors seemed to agree on (with my concurrence) was to have me start on the Sylatron treatment for the initial two months of high dose injections, then get baseline and diagnostic scans performed, dry out from Sylatron for a couple of weeks, and then start my radiation therapy. The therapy will involve 4-6 weeks of daily (weekday) 20 minute radiation treatments at Mass General Hospital, meaning I would be tied to being in Boston during that time – no travel possible so that I wouldn’t miss any treatments.

During the initial set up in preparation for my treatments, the radiology department would create a special mold for me to lie on for best exposure to the radiation source and then create a 3-D mapping of the region to be irradiated. And I get some tattoos on my body as an added bonus. The tattoos will be used as orientation and reference points for the radiation treatment to ensure that radiation positioning is exact.

The radiation treatment would be performed via Intensity-Modulated Radiation Therapy (IMRT), which is a very modern computer-controlled radiation delivery system which can control the intensity and angle of the radiation in a way to ensure the target area is getting all that it is supposed to while minimizing the amount of radiation in surrounding tissues and organs. I was also amazed to learn that the IMRT mapping involves Voxels – volumetric pixels (something some of my fellow graphics geeks may be familiar with), as a way to represent the radiation values and accumulation in a three dimensional space (a little more on this can be found here). Very cool technology.

The Fog of Frustration and Pain Medication

So now, here I sit, under a fog of frustration and pain medicine as I wait for my body to heal. I’ve figured out that I’ve been something of an invalid in terms of mobility for most of the last seven weeks, and I am sick and tired of it.

I’m used to doing things for myself, and it’s difficult for me to ask others to do otherwise simple things for me because I can’t without hurting myself in the process. Stupid things, like putting on socks, for example.

I also hate not being able to go out without causing myself grief. I had to miss a recently departed friend’s Celebration of Life yesterday, and would have loved to have gone out for dim sum in Boston’s Chinatown this morning. But no go with my current infirmity. I had hopes to get to New York City next weekend to see a friend perform at Carnegie Hall, but I’m guessing that’s not going to happen for me either. Very frustrating! It’s like being in a virtual jail – no tangible bars, but restrictive nonetheless.

The healing of my surgical area and graft site are progressing well enough, but I have a lot of pain and discomfort from swelling and from the area where the drain tube exits my body, and as a result have been on doctor-prescribed rest and pain medication. Add to that that I have to sleep on my back (because of the drain) on a bed that feels too soft, and the result is back pain (goes away when I get up) and not more than about six hours of fitful sleep during the night. I may well start having to nap during the day to catch up, a practice I never really adopted. Now may be the time.

The other frustration is that until my drain is removed, I cannot start my Sylatron treatment, and my drain won’t get removed until the amount coming out is less than 30cc per day (I’m at around 200cc right now, down from close to 500cc a week ago, so some progress is being made). And until I start my Sylatron treatment, I won’t have a clear idea of when my radiation treatments might start (although the best guess is mid-August or so).

Fortunately, while not being mobile, I am able to sit in my comfy office chair for decent periods of time, and work on my computer and some consulting client commitments as well.

And I can slowly shuffle around my kitchen for short periods of time, which resulted in a suitable substitute for my dim sum cravings this morning, crispy pork belly with compote of cranberries and cherries, depicted below:

Crispy pork belly with a cherry and cranberry compote

Crispy pork belly with a cherry and cranberry compote

The one thing, however, above all others that helps me overcome my frustration with being infirm is the support of my family, especially Linda, without whom I would not be able to manage at all, and without whom I would be an absolutely nut job now (or, as my kids might suggest, more of a nut job).

The Fog of Future Treatments

Okay, so may this isn’t a fog, really, but one of the things that has become known about cancers is that they occur because of gene mutations in the chromosomes of damaged cells. The most successful cancer treatments so far, across all cancers, have been ones that target specific mutations that exist in the cancer cells but no other normal cells in the body.

In melanoma treatment, there’s been a pretty amazing amount of work in such mutation specific research in just the least half-decade or so, the result being that there are a number of new treatments under development to address the various mutations (a great, but highly technical paper on this subject by several authors, including my own oncologist, can be found here).

What this means is that if the genetic mutation of the cancer is known, and that mutation is one for which a treatment is being developed (and tested), the greater the likelihood of effective treatment. And such targeted treatments are also potentially likely to have fewer side effects because they don’t have a systemic impact on anything other than affected cells.

In my case, just over a week ago, I had requested that cancer cells from my recent lymphadenectomy be genetically typed by the hospital’s lab. That process will take up to a month. The results won’t make a difference in my current treatment plan as the only clinical trials being done on mutation-specific drugs are only for late stage melanoma patients.

However, the really good thing about getting my cancer classified now is that if I do have a relapse some years down the road, it will vastly speed the decision on how to treat the relapse. With the speed and breadth of melanoma research at present, the likelihood is very high that there will be a number of targeted treatments available – even three or four years from now – that would help me fight a relapse, should that occur (although the hope is that won’t be the case).

In Conclusion: The Fog of Boston

Keeping with my fog theme, I would like to close by saying that the fog we have witnessed from our 37th floor apartment (36th actually, as there is no numbered 13th floor in the building) here in Boston has been spectacular this last week, with visibility so low at times that we could not see the street below us or the lights of the nearby Zakim bridge outside our windows. Back on Bonaire, the weather is never really cool enough to create fog, so this has been a remarkable climate contrast for us.

Not sure when my next post will be, but I’m guessing it will be after my doctors appointments on May 31st with an update on what’s going on with healing, drains, and treatment. Until then, please hang in there – that’s what I’ll be doing too.