Back in The Saddle Again (sort of)   February 17th, 2012

So, after entering the hospital via the emergency room on Tuesday, February 7th, via the emergency room to wait for an in patient bed, I had been out of hospital since Valentine’s Day. Interestingly my hospital stay diagnosis listed my condition as “failure to thrive” (which is a condition typically associated with infants and small children). In my case, the problem was that despite the best efforts of my wife I was unable to get myself to consume food, and thus not getting enough nutrition. How ironic that a foodie like me (http://www.foodiemoment.com) could almost die of starvation? And part of the reason for that was the swelling of the brain tumors that formed after my brain radiation in December. It’s definitely good to be back in my own space after being in the hospital, the private room I had was very nice, but not very restful. I am now under the daily visitation of a nurse from the hospital to make sure that my various statistics and vitals stay within range. One of the things that has gotten me back on board again was the consumption of a broad spectrum steroid to reduce the swelling in the brain, and one of the side effects is an increased appetite.

One of the things that I learned while I was in the hospital, was that a personal hero of mine Mike duGruy, had died in a tragic helicopter crash. Mike and I and Linda had spent hours at past conferences, discussing his exploits, like his being in the middle of a swarm of killer whales beaching themselves to capture seals, when he realized he was also wearing black neoprene, looking like a big seal himself, and Mike’s incredible cephalopod video footage, has been an inspiration. It was an honor to have known him – more about Mike can be found here: http://www.independent.com/news/2012/feb/15/mike-degruy-1951-2012/ and http://mikedegruy.com/

 

A Little Better Each Day   February 10th, 2012

From Linda…
Still in the hospital and doing better, Jake’s energy level has improved. He ate some food at each meal and even requested something for me to bring to him for breakfast tomorrow morning. He has also asked for us to make a Dim Sum take-out run to Chinatown; positive interest in food is a good sign. His strength is improving as well. He was tested by the PT folks on his level of coordination combined with strength. At this point in his recovery, they determined that he requires 24 hour supervision and the huge differences in our sizes – 1 foot in height and 70 pounds in weight – makes this too difficult for me to handle alone which again is another reason for remaining in the hospital for now. The PT folks at MGH will continue to work with Jake in the hospital getting him more mobile and confident as his energy and strength return.

We also spoke to Dr. Flaherty and we are still a go on Jake’s second dose of Ipi scheduled for next week.

 

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Quick Update   February 8th, 2012

From Linda…

We have met with Dr Flaherty as well as Dr Curry today (and it felt like a half dozen other drs). Currently, brain surgery is off the table.

Jake is doing better and has regained some strength. He did eat some today which is much better than the last several days. They are still trying to figure out the reason for the low blood levels. A scan of his abdomen showed no problems there.

The kids came over to visit for an hour or two and both remarked how much better he looked and how more responsive he was than just yesterday. Of course, it probably helped Jake to get their hugs as well :-)

I read your posts and emails to Jake today as well. Thanks for the encouragement and support.

 

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Jake in the hospital   February 7th, 2012

From Linda…

Jake had been feeling dizzy, weak, and fatigued last week. Over the weekend, it became a big problem and we began a fast and furious email conversation with all his doctors at MGH. They decided to push his brain MRI to Monday morning to see if anything there was causing problems. This morning we had an in-person consult with the radiation oncologist, Dr. Oh. He saw some minimal changes on the scans but wasn’t expecting the ipi to have done much at just 1.5 weeks in any case. He did take notice of Jake’s weakened condition and decided to admit him to the hospital to get him started on various medications to help with his energy level, his non-existent appetite (my major frustration and concern), and get further consults from the brain surgeon that we had met with in January.

So Jake and I spent much of the day waiting in the ER until finally getting admitted to the hospital about 5pm today. Jake was in the ER so they could start the hydrating IVs and medications as well as doing lots of tests rather than waiting for a room.

Jake is in the good hands of the Lunder 9 staff at MGH. So far we know he was dehydrated and had low red blood levels enough to get some whole blood units which he is getting right now. Tomorrow, we should be meeting with the doctor about possible brain surgery.

Jake also wanted to let everyone know that he decided to withdrawal from his classes since he felt unable to concentrate well and was having problems typing.

 

 

 

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We are now proud owners of a new vehicle a 2008 Jeep Liberty – a model of Jeep Cherokee – which we purchased last Friday thanks to the help of our friend Denise Kacavas help companies cut of us and her brother-in-law Jim who runs a dealership – Allen Mello Dodge Jeep – in Nashua, New Hampshire Jim sent a driver down to pick us up in Boston and Marvin – a sales guy at the dealership helped us figure out what vehicle we wanted as we wanted to also get get four-wheel drive and lots of legroom in the back seats for our tall teens.

After we found the vehicle we wanted Jim even bought us lunch. Thank you Denise, Jim and Marvin and everyone else who offered help and advice with our car purchase.

A number of you had offered to help us move from Boston to Chester once we knew the appropriate dates, well, we now have those dates our plan is to now disassemble all of our IKEA furniture on Friday, April 13th, and move all of our stuff out between 1 and 5 PM on Saturday, April 14th we already have the freight elevator in our apartment building reserved for the move-out and are hoping to convince Linda’s father to drive a U-Haul truck to and from Chester (we plan on having a convoy up to Chester (with boxes in all the extra vehicles and furniture parts in the U-Haul truck) For those of you who have already volunteered to assist us please drop us a note if you can join us on either of these dates. Thanks!

Doug & Erin – We will glad accept those empty boxes you offered us yesterday.

In other updates – I am not experiencing any treatment side effects from the ipilimumab (and if they appear it won’t be for another 10 days, but I am still feeling extreme fatigue, a poor appetite and itchy skin from my radiation treatments and very itchy skin from the same. One other life change I am pursuing is the resumption of my course work for my MFA in Photography with the Academy of Art University in San Francisco – I have committed to taking two courses this semester – classes started today.

 

After a brief meeting with my oncologist this afternoon to go over what to look out for with respect to the side effects of ipilimumab – skin rashes and gastric issues – so we could let the hospital know that it’s happening.

The doctor said that the soonest I might experience the rash (the most likely side-effect) would be about two weeks from now.

My newly found cousin Carolynne who is also on ipi as part of a clinical trial says that after her initial four doses she had no side effects. I got to see her today because she had an appointment with my oncologist directly following my appointment, and she and her husband Mark came to visit us in the waiting room of the infusion center

The infusion of the ipi took place in Mass General’s Yawkey Outpatient Center on the 8th floor (one floor below where my oncologist holds his consultations. The infusion center is also where chemotherapy patients get their chemo treatments – each infusion area includes a TV and several chairs for guests, as well a chair designed much like a La-Z-Boy but not nearly as comfortable (for the patient).

This combination can create raucous neighbors as we discovered today. The guy visiting the patient in the infusion area to my right spoke loudly about everything, and seemed to be a know-it-all about every subject. Noise canceling headphones along with a music source are coming with us for the next infusion in three weeks to help drown out adjacent conversations and televisions.

We learned that the ipi infusion process takes over two hours as the nurses first have the hospital pharmacy prepare the ipilimumab infusion (267 ml for me based on height 6’2″ and weight (195 pounds clothed) – which takes about 45 minutes. The infusion is administered via IV (intravenously) over a 90 minute period along with time spent in the waiting room we spent about two and a half hours waiting to complete the first infusion of ipi.

The next excitement comes about on Friday afternoon when we go shopping for a used vehicle to use while we are living in the house in Chester. If anyone has good suggestions on how to not get ripped off by used car salesmen, let us know.

The next medical treatment takes place in the form of a Brain MRI on February 9th – a week before the second infusion of ipi and I may have another set of body scans a few weeks later (between the second and third ipi infusions) which may impact a booked trip home to Bonaire in the middle of March – the results of the scans would be more important than going back to Bonaire for a couple of weeks, I figure.

 

Treatment Start in Sight   January 22nd, 2012

I got word last Wednesday morning from my most excellent oncology nurse Ellen that all hurdles with my insurance company had been surmounted. And after going to the hospital to get blood drawn for reference values, I learned that I would be meeting with my oncologist next Wednesday for a final consult to precede my first injection of ipilimumab, also set for next Wednesday afternoon.

One thing I failed to mention in last week’s downer of a blog post was that one purpose of ipi is to set the brakes free on one’s white blood cells to allow them to better fight infection. Considering many of my existing white blood cells are TIL cells design to target my tumors, the ipilimumab should have a positive impact on slowing the growth of my melanoma. Not looking forward to the itchy skin side effect as I already have very itchy skin from both the radiation treatments I have gone through. My next ipi injection will be three weeks from Wednesday, and I have a Brain MRI scheduled on February 9th to see if my brain tumors are shrinking from the ipi. If shrinkage occurs, I will get to avoid brain surgery to remove a tumor in my right temple (which has been leading to small seizures on the left side of my body) and another tumor located on my cerebellum back of the head at the top of the spinal column. If there is tumor shrinkage due to the ipi – it should manifest itself after the first or second injection I won’t know until after my consult on Wednesday how often I will need to get CT or PET scans. My newly found distant cousin Carolynne has suggested that since we share similar genetics that ipi should work well for me, because it has done so for her. And since it boosts the effectiveness of TIL cells, that’s another variable in the tumor-fighting equation.

One practical impact this latest development has on future plans is that the 12 weeks of treatment will prevent us from moving back to Bonaire in April as we had hoped we coud do as of a few weeks ago. Instead, to conserve resources we will be moving into a house owned by Linda’s family in Chester, NH, not far from where we used to live in Derry, NH before moving to Bonaire in 1997.

 

Melanoma Sucks   January 12th, 2012

Melanoma Sucks

This blot post will be more succinct that my prior posts.

I had a PET scan and a brain MRI yesterday, and a meeting with my oncologist today. I learned that my scans showed that the tumors on my liver and lungs and right adrenal gland have resumed growth (in contrast to what my scans in early November showed. as have my brain tumors – post radiation my further treatment will involve a drug approved last March by the FDA, known as Yervoy (ipililimumab) which is administered four times over a twelve week period at a cost of $132,000 (paid by insurance hopefully). So instead of moving back to Bonaire in April I would downsize apartments in Boston to be close to treatment at Mass General Hospital.

 

Eye See Warmth in my Future   December 20th, 2011

I have had a number of folks write me to ask if all was okay since I’ve not posted anything here in the last several weeks.

For now, I will ask you to assume, for future reference, that no news is good news.

The reason I had not written anything is that whole-brain radiation is singularly unexciting, but it does wear one out. It significantly increased my fatigue and reduced my appetite. I ended up losing another seven pounds making me even skinnier than before.

Fortunately the whole brain radiation is over with since last Thursday, and I will have another brain MRI in early February once the brain has healed to see how things are going. There’s no reason to expect things not to look good then since whole brain radiation is a common treatment for the tiny tumors and bleeding I had. And my energy levels are slowly returning to their pre- brain radiation levels and the same goes for my appetite.

And being home next week on Bonaire will only improve my health, I am sure.

One of the interesting side effects of the TIL/TBI treatment I had in early October was that later in the month I noticed that my distance vision had deteriorated but my near vision had improved. When I asked my doctors about this, they had not heard of this being a side-effect and recommended that I go to an optometrist to get my eyes checked. We did that a few days later at Lenscrafters. The optometrist took the following retinal images. If you look at the right image, you see a dark blob near the center. This is called a chorodial nevus (scientific name for a freckle in the eye). The optometrist, taking my recent history of melanoma into account flagged this as something to have my oncologist look at more closely, just in case.

My left retina image

My left retina image

My right retina image - note the freckle below and to the right of center

My right retina image - note the freckle below and to the right of center

Yesterday I had a follow-up on a freckle on the back of my right retina at Massachusetts Eye and Ear, and got a clean bill of health on the nevus (woohoo!) They took new photos for reference, and I have a follow-up in late March to make sure it continues to look good. One interesting thing the doctor said yesterday was that the freckle looked like it was turning white on the edges – a condition known as vitiligo, where pigmented skin cells lose their pigmentation. Apparently vitiligo is not uncommon in people who have undergone TIL treatment and I have found a few other external places on my body where it appears (including, believe it or not, the tips of all ten of my toes.

Jake with dilated pupils and new facial hair growth

Jake with dilated pupils and new facial hair growth

As a footnote to the whole vision thing, this past Sunday morning I discovered that I once again needed reading glasses to read the newspaper and that my distance vision was back to normal (20/20) and this was confirmed at the eye doctor’s yesterday too. Go figure.

So, you may be asking yourself “what’s next?”

In the short term there’s a high likelihood that I will lose all the hard-won stubble on the top of my head again as a result of the whole brain radiation treatment, but I’ll get to keep the fur on the upper lip and chin (see image above).

And shortly thereafter I expect to be warm and sweating on Bonaire enjoying a nice time at my home with family and friends. We are awaiting a Turducken here in Boston tomorrow that we plan on bringing to Bonaire with us to feast on for Christmas with a few friends.

We get back to Boston in early January (we’ll be bringing our Antarctic jackets and hats with us from storage there so we can survive the bitter cold that is still likely to face us in Boston). I have scans and a consultation with my oncologist planned for the second week of January, which will hopefully confirm what physical touch is still confirming in my thigh, namely that the TIL cells are still attacking my cancer cells and as well as preventing new growth.

I would expect my next post to be in the middle of January. Until then, no news is good news.

 

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.