Of Guinea Pigs, Romance and Financial Advice

The Providence Cancer Tower in Portland

We had a busy two weeks. During the chemo-vacation, we were on two-weekly oncology visits because cancer can grow fast and unexpectedly. And so it did.  Our oncologist worried about the chest pain that seemed to be getting worse and the pain in my back and butt that did not go away. She went into full panic mode and when she does, things happen. A CT scan and MRI was scheduled for the next day and we came back two days later to discuss the result. The news was not exactly what we wanted to hear: the bone cancer had spread to the right hip and the damage in the lung had enlarged and is now diagnosed as cancer as well.  That was a bit of a bummer, but amazingly there are still a few choices left: we could switch to a pill based cancer drug called Tarceva which can delay cancer growth and add some time to the good life we are having without too many side effects. Alternatively we could participate in a clinical trial of an immunotherapy drug that is in development.

Our Oncologist

I had read about immunotherapy drugs and knew that every major pharmaceutical company is racing to get these kinds of drugs approved. We are fortunate to have an oncologist who is a leading scientist in the field of Lung Cancer Research and supervises one of the three test legs for Bristol Myers Squibb. She thought I could qualify for the clinical trial and we started the paperwork immediately. The test protocol requires a number of tests that had to be completed before acceptance and that included another MRI in the afternoon; a biopsy of lung tissue on Monday; a CT scan and a bone scan (that requires an infusion of radioactive material – our toilet now glows in the dark) as well as an X ray on Tuesday and too many blood samples to remember. On Wednesday we went to the hospital to check if any of the tests had disqualified my participation, and when that was not the case, the first infusion started right then and there. 7 hours later we walked out of the hospital as an official Guinea Pig with the new drugs infused and hopefully they are now killing some cancer cells.

Portland and Mt Hood

Hilton Portland

In the middle of all that medical ado, romance was flourishing. On a beautiful Saturday, March 22, Bonnie and I celebrated 45 years of marital bliss with a romantic date in Portland. The afternoon started with an exquisite lunch in restaurant Andina, according to Urban Spoon one of the top 5 restaurants in the city. For the Philadelphians: this is the Peruvian equivalent of restaurant Amada: it cannot get any better than that. This was followed by a white wine tasting in the Hilton, and a classical concert in the Arlene Schnitzer Center. Bonnie was a little disappointed she was not called on stage this time but other than that the concert was perfect. Afterwards there was, of course, a tasting of the regional red wines and snacks before stumbling into our room at the Hilton.

Ferry Street, Eugene Oregon.
Bert Versteege, Eva Ouwehand, Phocas Savenije,
Larry Lissman, Lydia Simoneau and the
gorgeous bride

45 years of marital bliss: March 22, 1969 and March 22, 2014

About the new cancer drugs:
Immunotherapy is probably the future of cancer treatment. Whereas traditional cancer drugs target and kill all kinds of fast growing cancer cells (and hair is one of these fast growing cells, that is why you lose it), immunotherapy enables the patient’s own immune system to selectively kill cancer cells.  The system would always do that, were it not for the fact that cancer cells bind certain proteins, which make them appear as normal cells. Pharmaceutical research is now focused on removing the proteins from cancer cells so that the immune system’s T cells can - chomp, chomp - eat the cancer cells. It was first discovered in Melanoma (the deadly form of skin cancer) treatment and Bristol Myers Squibb has an immunotherapy drug on the market that shows a spectacular improvement in 3 year Melanoma survival rate. At $120,000 for 4 injections there better be some improvement. Lung Cancer is the most common form of cancer (over 200,000 cases in the US every year) and that is where the real money is. It is no surprise that the immunotherapy concept is now being applied to lung cancer and Bristol Meyer Squibb (BMY), Merck (MRK) and Roche are apparently the front runners. The Phase 1 test in which I participate is a combination of two drugs that are given intravenously every two weeks (Nivolumab) and four weeks (Lirilumab) to remove 2 different proteins from cancer cells (PDL1 and KIR). The Wall Street Journal estimates the price of this drug, when approved, to be $ 220,000 per year and that times 200,000 new cases per year translates to $ 40 billion in sales. Ka-Ching..! With the many uninsured people in the US, it will not go that fast, but according to the WSJ, Bristol Meyer Squibb could add another 6 billion sales in three years, which is a significant increase compared to the 30 Billion Sales they have now.  In my hospital, 8 patients were already in the clinical trial when I started. The wife of one of the patients wrote in a web forum that her husband had a 41% reduction in tumor size after 8 weeks. Wow.  I don’t know about the other 7 and the medical staff will not discuss patients. However, as long as you see new installments of this blog, BMY shares look like a winner. If the blog suddenly stops, it may be time to sell.

Since this is a public blog, the above is not investment advice, we do not currently own BMY and you better do your own DD.

Spring is arriving

Medical Update

The medical situation is good but a little confusing. The last chemo infusion took place on January 21 2014. Four weeks later I had my usual CT scan and visited the oncologist one day thereafter to hear the results. The good news was that the tumors had not grown and some previously found cancerous lymph node in the abdomen was apparently cancer free. The CT scan also showed that a large part of the right lung was dysfunctional, which is noticeable because climbing a flight of stairs leads to heavy breathing, and not for the reasons one likes to. The oncologist could not tell whether the damage was due to delayed scarring from radiation, or a reaction to the docetaxel, the chemical compound that was infused. She decided to withhold any treatment for the time being and I have been on a chemo-vacation for the past 3 weeks. That certainly improved life: Hardly any coughing, a little more air, and no annoying side effects such skin rash or itching. My hair is starting to grow again and I had to be retrained in the art of shaving. I have been to the oncologist’s office for a checkup meanwhile and I will stay off medication, probably for another 4 weeks.  This is good. Spring has arrived, the temperature of the rain is increasing and I will not be house bound as I was during the winter.

Snow travel

Since the last blog, we had our week vacation in Maui. Leaving for Maui turned out to be a challenge. The first three days of snow and sleet this year happened exactly at the time we had to leave. We took one snow shovel when we moved from Pennsylvania and that is the only snow equipment in the entire neighborhood. Bonnie’s water aerobics training was put to good use when she managed to clean the driveway to the top of the road, only to find out that the homeowners association decided to save some money by not clearing the roads in the development itself. The next day we had another dump of snow and even our all-wheel drive car would not have made it up the steep driveway. Josh saved the day. He bought two extra snow chains for Sara’s all-wheel drive swagger wagon, which now had snow chains on all four wheels, and was able to rescue us. We left the night before the flight and we all stayed at a Portland airport hotel because there was an ice storm forecast for the day of departure. The fact that the plane was completely full is a miracle: there was indeed a thick layer of ice on the ground and travelling was not easy.

Maui

The week in Maui was, of course, fantastic. Sara and Josh had arranged a nice apartment with a studio attached. Nice sunny weather, palm trees, beaches, swimming pools and beers in lounge chairs: what else does one need in life? This was perfect. The grand kids had a ball and kept parents and grandparents to a lesser extent, busy in swimming pools and on beaches.

Grand-kids waiting to feed Koi fish

The kids participated in feeding fish in the koi pond at the end of the day. Other activities included snuba diving in the ocean, surfing, football in the pool, spa visits by the adult women and very little shopping: I call that a successful vacation.

dinner and umbrella drinks

Surfer Babe

Valentines Day was celebrated in style. Bonnie and I drove to the other side of the island and had lunch at "Mama's Fish House", probably the most famous fish restaurant on the entire island and romantically situated on a palm beach.

grinning on a selfie

The food was exquisite. Fish caught around the island was freshly served the same day but to my dismay that included Opa or Opah as it spelled in Hawaii. The kids were quite amused that Opa was served pan-fried or grilled.




Spring and visitors are coming

The fear for a drought in Oregon was premature. The precipitation we lacked early in the rain season came down in buckets in February and March. The reservoirs are full to capacity and the snow level is back to normal. The temperature is increasing and most days we get to 50F or higher, but often with rain or showers. Plants like that, people not so much. The signs of spring approaching are everywhere and we enjoy seeing the first flowers but we especially enjoyed the first visitors this year. Jacqueline visited us the first weekend in March. It was an enjoyable and relaxing couple of days with few excursions. Tammo and Aafke arrived the next weekend for what I thought was going to be a weekend of strenuous projects around the yard. The rain however provided an excuse for a lazier visit but in between showers a big pile of firewood got transported to the garage.

A star is born

Tammo, Aafke, Bonnie and I went to the Keller Auditorium, the biggest stage in Portland, to see the Blue Man Group, who were touring the pacific Northwest. The show was humorous and spectacular and we enjoyed the performance. As professional and talented as they are, their performance paled in comparison to Bonnie's on stage performance. Out of a total audience just shy of 3000, the group needed one member of the audience to help their skit. They of course looked for the best dressed and most elegant spectator and zeroed in on Bonnie. She was helped on stage, asked to wear a blue bib, and take a seat at the on-stage dining table with the three blue men. In the skit they were supposed to eat Twinkies, a gooey sweet concoction, guaranteed not to contain any natural ingredients. This is of course not on Bonnie's diet plan, and that added to the length and fun of the skit. She later ate some of the banana that was on stage and her bib magically started spouting some kind of goo. After about 15 minutes, Bonnie was still having way too much fun and the blue men had to gently push her off stage and back in her seat. Everybody liked it and she got a big applause and credits at the end of the performance.

Finally:

Yesterday I had a health visit with the Pulmonologist, the poor guy who drew the short match and had to give me the "you have cancer speech" when it was first discovered. He remarked that it has been close to a year and he considered that "quite a feat". Good. I like to know which superlatives he will use when we meet one year from today.

Chilling in January

After all the excitement and visits in December, January is definitely a slow month for the retirees. I imagine that all the eager beavers who are still dependent on work to make an income do not share this sentiment, and are probably looking for ways to make some extra money after an expensive December month. We geezers can just sit back and watch our bank accounts fill up effortlessly. J. Well, not entirely, we went to the social security office to apply for Bonnie’s social security benefits and that was a couple hours of strenuous work.

The weather in Oregon added to the slowness. We have not seen much rain and the entire state is experiencing a severe drought. The first forest fires have started and the ski resorts were unable to open some lifts due to lack of snow. Even so, for most of the month we have not seen temperatures much above 40 degrees F (5 C) and often have foggy mornings. Lung disease does not agree with that kind of weather and we stayed indoors a lot of the time. The advantage is that we did not catch colds or flu bugs.

The chemotherapy which I had last week is starting to become routine: first the basic health checks (they are still excellent) blood tests (also good considering the medicines that destroy the immune system) and then a couple hours for the infusion.  The next day I went back to the hospital for a shot to boost production of white blood cells. The chemo has side effects; in particular that it makes you itch like crazy, but it also has advantages: I only need to shave every four days and I save on haircuts. I am not completely bald, like some people, but hair is thinning out and the mustache now resembles the first facial hair experiment by an adolescent male.

The Swagger Wagon Wine tour was definitely the high point of the month.

The Swagger Wagon 

As a Christmas present, Sara and Josh organized a wine tour and the four of us took the Swagger Wagon (Toyota Mini Van), for some wine tasting in the Chehalem Mountains. We started out with lunch in Newberg and then headed to the Vidon winery for a private tasting.

25 tastings later..

The Vidon winery is owned by Vicki and Don (hence the name) who are good friends of Sara and Josh and whom we have met some 10 years earlier at Sara and Josh's wedding at the Mt Hood lodge. There are over 600 wineries in the Willamette Valley, but we only managed to do two more that afternoon.

The wineries serve small quantities for tasting, but it adds up after three wineries with nine different wines each and we ended the tour in even higher spirits than when we started. Sara was nice enough to refrain from drinking and dropped us off at home after the event, together with some wines we bought to refill the cellar after the family finally did some serious damage to the contents of that cellar over the holiday period.

We are starting to long for warmer weather and decided to join Sara, Josh and grandkids in Maui for a week. This will be the second week in February. There were still seats open on some flights and we will be traveling way, way back in some middle seats on Hawaiian airlines, which had the shortest flights. It will require some painful adjusting to travel without perks and having to pay for a suitcase (OUCH!).This will be three weeks after the chemo and hopefully the immune system has recovered sufficiently not to catch the bugs of the three hundred people on that flight but I am nevertheless considering the Japanese face mask way of traveling.

The next CT scan will be immediately following our return from Maui and will give us an update whether the cancer is still in check. Meanwhile it has been nine months since the start of the treatment and there is some satisfaction in knowing that the exit takes longer than the gestation period needed to put me on this earth. Probably a lot longer!

Thanksgiving and nearly Christmas

It has been a month already since the last post on this sight.  So much has happened and we have had a very busy social life in the interim.  

After the last chemo therapy session on Wednesday we left for Glen Mills on Thursday to visit many of the friends we left behind in the westward trek.  Our good friends, Pat and Harry, hosted our visit inviting friends and neighbors for dinner and taking very good care of us.  Anne and Martin hosted a wonderful evening with friends and former colleges  It was marvelous to see everyone again and catch up on everyones changes and progressions.  

Unfortunately, all the infectious risks associated with travel caught Barend on our way home.  It began with a viral throat infection which created a racking cough.  Narcotic cough syrup and pills were the only help the doctors could offer until it mutated into a bacterial lung infection.  This just in time for Thanksgiving and the arrival of Jacqueline, Adam, Naomi and Julia for the holiday.

Sara and Josh hosted the Thanksgiving meal and Mike (my brother), Lee (his wife) and his youngest daughter Abby, joined us Wednesday and Thanksgiving day.  It was an exceptional feast and wonderful party.  Four of the five grandchildren returned to the lake house with us for more fun and games until the California family left for home on Saturday.  My afternoon with the wee ones was going to the cinema to see Frozen.

Frozen was an applicable theme as the weather turned to deep freeze soon afterward.  The lake was frozen over then came snow on top of that.

This made the start of Christmas preparations somewhat difficult except for the Elving (shopping) which is mostly my entertainment along with interior decor.  With the help of Sara the tree was cut and brought home and the exterior lighting was begun and later completed.  We are now more or less prepared for the grandkids from California and their parents too, of course.

The most recent chemo was this past Wednesday due to the delay caused by the recovery from infections.  Back on schedule now.  The same day our Ithaca family began their arrivals with Aafke.  Tammo and Jelmer will arrive tonight from California and NYC respectively.

The next chemo at the end of the month will include the results of a CT scan so there will later be a better picture :) of the status of the cancer.

Of Moles and Voles and Donut Holes

A lot has happened since the last post on November 4th.  That was two days before our oncologist visit and infusion chemo.  As it turned out, there was no chemo because the scans taken on November 5th revealed that the maintenance drug was not working to hold the line on regrowth of the lung tumor and a new lymph node tumor in the abdomen was spotted as well.

We went off with a game plan for starting a pill therapy to later be followed by another round of infusion when that failed to prevent a cancerous first down.

Barend, of course, researched the financial aspects of this since it fell under the prescription drug plan rather than hospital costs.  Ouch, double "DONUT HOLE" time, since we would have reached the limit before the end of this year and within a month in 2014.

Avenues of subsidy were investigated but bore no fruit in our case, so on to the next plan.  Luckily the doctors involved agreed that it would be better to spend the $10,000 on a vacation than line the pockets of Genetech and their partners in Tarceva so we moved to infusion again today.  

Whole new set of side effects with this one; hair loss which you might think is not problematic since he has so little but it will involve his mustache and chest hair so.....

This is the last chance to see "Hairy Barry" 

We are heading eastwards to Pennsylvania tomorrow for a long weekend to visit our good friends and former neighbors.  The weather forcast for Glen Mills is about the same as it is for Beaver Creek so we will not be reminded of the extreme cold and snow that Pennsylvania winters can bring.  A good time willl be had by all.

A Sunny October in Oregon

Bonnie and Hans

The first week of October brought us more overcast days and showers. Fortunately our lives were brightened by a visit from Hans who came all the way from Singapore.  Hans and I go way back: We both grew up in Wassenaar, went to the same grade school, high school, college and both lived in the infamous Ferry Street house in Eugene. Hans used to live in Portland and still has a ton of friends in the area whom he visited while staying at our house. In between visits we had fun catching up on our lives and reminiscing about good old times. Hans could not profit from the nice sunny weather which we had the rest of the month, though people living in Singapore and Sydney may actually enjoy cooler temperatures.

Sunny Fall weather in Oregon

On the medical front there is not a lot to report. The maintenance chemo is easier to take and it is certainly easier than Bonnie’s failed tooth implant, for which she needs at least three procedures to correct the situation. Ouch!  While the health may be stable, the golf game is deteriorating and getting to the point of being embarrassing.  Actually, it is embarrassing:  on a bright sunny day I managed to get my worst score in the Oregon City Golf Club daily tournament.  I don’t quite know what to do about this, other than putting the blame on the oncologist.

Jacqueline, Bonnie and Grand Kids at the
Japanese Tea Garden in Golden Gate park

Family visit to the Science museum in San Francisco

With two free weeks between hospital or doctor visits, we now have the opportunity to do some traveling, so we flew to the Bay Area to visit Jacqueline, Adam and the California Grand Kids. The girls had a school free day on Friday and we visited the Golden Gate Park in San Francisco. We visited the Japanese Tea garden and the Science Academy museum, which are both located in the park. On Saturday the girls worked on their Halloween costumes with some help from Oma while Adam and I watched the Oregon Ducks game in the local pub. (yep, won again: Go Ducks). It was a fun weekend, and if Bonnie had not discovered that our flight home was booked on Monday, rather than Tuesday as I thought, we may still be there.

Emmett and Oma at the pre-school Halloween Party

We were invited to our grandson’s preschool Halloween party on Wednesday morning (very nice!) After the party he took us to his favorite restaurant for lunch.

On Halloween itself, Bonnie had the first of her implant surgeries and had to rest the remainder of the day. I went to Josh and Sara that afternoon and enjoyed all the kids’excitement of calling on the neighbors and collecting tons of candy. Even Kellan, just one and half years old, quickly got the hang of this event and grabbed hands full of candy to fill his Halloween bucket. (way to go, Kellan!)

The End of Summer

This week brought us an early start of the Fall with the remnants of a Typhoon causing storm winds and dumping tons of rain across the Pacific Northwest. It was also the first time the lighter one-drug maintenance chemo had been scheduled. Prior to infusion, the Oncologist reviewed the CT scan which was done the previous week. The results were encouraging and showed that the tumors had not increased and neither had the amount of fluid in the lungs. It confirmed previous scans showing the effectiveness of the cancer drugs. The infusion itself was much easier to take and much shorter: we were out of the hospital before noon and the only downside to that was that we missed out on Sara’s lunch visit to the hospital.

While the medical results are remarkable, Robin’s visit to Oregon easily surpassed that. He made a quick and very much appreciated visit to Portland as part of a whirlwind tour across the USA that included Portland Oregon and Portland Maine. We attended the same college and lived in the same Brussels neighborhood. The last time we were together must have been some 20 years ago. We had one and half day to catch up on what has happened in all that time. We also stopped by to visit Sara who knows Robin from her formative years in Belgium. Well..... Belgium definitely, formative maybe.

Robin, Sara and two grand kids.

The time was limited but we managed to see some of Portland, visit the house on the lake, and have a nice dinner in town next to the theater where we had tickets for a concert of Opera highlights. When it was time to move from dessert to the theater Bonnie discovered that the performance I booked was in a totally different venue but a quick taxi ride got us seated on time. Oops, another senior moment. We all stayed downtown for the night, and Robin was off early the next day for a flight to Boston.