Tuesday, April 26, 2016

CR 309: 30th infusion, and lots more

I'm back in the infusion center in Hopkins' Weinberg Cancer Center. All the nurses know me by name. I check the clipboard to see if the pharmacy has released my drug. Once a seat is open I raise the footrest on the recliner, lean back, and open my MacBook. On Tuesdays I get me weekly email listing the accumulated questions, postings, and journals entries regarding bladder cancer on www.inspire.com, and I sift through the posts, find those that I feel I can add something of value, and post a comment. I frequently will get follow-up questions from others who are newer in their cancer journeys. I hope I can offer some guidance.

Before my infusion, I met with Dr. Hahn. I passed along my readings from the AACR conference (of which he was already aware), and he allowed that he had reviewed a considerable number of articles that were about to be released in advance of the forthcoming ASCO conference. He said that interim data from my trial would be released, as well as lots of other information regarding immunotherapy and urothelial as well as other types of cancers. I asked him whether the durability data further showed prolonged survival for those who had complete responses. He said that it did, which gives me hope that my response will last longer than the next scan. Dr. Hahn said that the data also suggested that, for those patients who had stopped immunotherapy, then later had a relapse, that if the patient resumed immunotherapy, odds were good that the cancer would again be slowed or stopped. This suggests that mets BC might be transformed into a chronic disease that, with good management, would enable patients who have responded to live for years.

Now that we know immunotherapy works for some patients, Dr. Hahn said that a key focus for the next couple of years would be to better determine which patients are most likely to respond to immunotherapy, and which patients are most likely to respond to chemotherapy (which also does not work for everyone). It would be great to have better predictive tools to know which therapies will work for whom.

The issue of which therapy will work recently hit close to home. A couple of weeks ago my good friend Cynthia was diagnosed with a leiomyosarcoma, a rare and nasty form of cancer in her abdomen. Watching her and her husband Walter endure the hammer blows of the ongoing bad news while they are trying to drink from the fire hose of information that is blasting at them reminds me of my early days with cancer. It is no fun. I'm trying to help them as best I can with the process, knowing that each cancer is different and what has happened to me is not particularly relevant to to her.

A couple of weeks ago Steve Thrasher wrote an article for the Guardian called "Don't tell cancer patients what they could be doing to cure themselves." The opening lines are perfect: "If you’re a religious person, for the love of God, don’t tell someone with cancer that if they’d just drink juice (or take vitamins, or pray or have a “positive attitude”) that they could cure themselves. And if you’re not a religious person, for the love of reason and decency, don’t tell someone with cancer any of these things, either." Well said. Those of us with cancer have heard so much uninformed nonsense.

Thrasher says that "it’s an act of violence every time someone suggests a simplistic, unproven and fantastic cure for another’s cancer." He discusses why that is so, and hits the nail on the head. Similar themes are explored in posts on ScienceBlog and Ask Amy. I doubt that readers of this blog will be inclined to commit acts of violence on cancer patients by volunteering information about your own or a someone else's cancer experience or some unproven cure, but in case you are tempted: Shut Up. It isn't relevant. Listen, empathize, and provide support by spending time with those you love.

Speaking of which, this past week Jennifer and I flew to Florida and joined all of my kids for a week at the beach. Rose and Lily were there, as well as Josh. We invaded my mom's house, and she and Ralph generously (and wisely) decided to stay at my sister's while we took over her place. It was wonderful to spend time at the beach, or the pool, or in the house, with all of my children, as well as my grandchildren. I was most frequently ensconced in a recliner, surrounded by children's books, with either Rose or Lily (and sometimes both) on my lap as I read to them. Having a small child snuggling on your lap while you read out loud is one of the sublime joys of life.

Tuesday, April 19, 2016

CR 302: Nivolumab doubles the odds of long-term survival

This week at the American Association of Cancer Researchers (AACR) annual meeting, researchers released data regarding the long-term survival of one of the earliest human clinical trials of nivolumab (Opdivo). The study, titled "Durable, long-term survival in previously treated patients with advanced melanoma (MEL) who received nivolumab (NIVO) monotherapy in a phase I trial," shows that patients with metastatic melanoma who took Opdivo more than doubled their chances of surviving five years, compared to all previous therapies. The five-year survival rate for patients with advanced melanoma who got non-immunotherapy  treatments was 16.6% between 2005 and 2011, according to the National Cancer Institute.

This new study is the first to look at long-term survival for an anti-PD-1 immunotherapy. In 2008, Bristol-Myers Squibb began recruiting patients into one of the first Phase I human trials for nivolumab. Over the next four years, 107 patients were enrolled. All had been heavily treated with other therapies, such as chemotherapy, and all had failed. All were facing likely imminent death. The main focus of the study was determining appropriate doses of nivolumab. Different doses were given to different patients. Duration of dosages also varied, and some received nivolumab for as long as four years. Earlier analyses from this study showed little relationship between dose and response -- in other words, if the nivolumab worked, it worked -- and eventually BMS settled on a standardized dose of 3mg/kg. In 2015, the researchers went back and looked at who was still alive. By that time, all of the patients had started nivolumab two years or more.

Following is a chart from the study. OS means Overall Survival. The chart breaks out the subset of patients who received 3 mg/kg of nivolumab, compared to everyone in the study.

OS rates

NIVO 3 mg/kg
(n=17)
All Patients
(N=107)
OS rate, % (95% CI)*


12-month
64.7 (37.7-82.3)
62.7 (52.6-71.2)
24-month
47.1 (23.0-68.0)
48.0 (38.1-57.2)
36-month
41.2 (18.6-62.6)
42.1 (32.4-51.4)
48-month
35.3 (14.5-57.0)
34.8 (25.7-44.1)
60-month
35.3 (14.5-57.0)
33.6 (24.6-42.9)

These data show that not everyone responds to nivolumab, most likely because not all tumors have a PD-1 and PD-L1 interaction. The PD-1/PD-L1 blockade is illustrated in a September 28, 2015 article in Drug Discovery and Development. (I've removed the image from this post because the formatting was off.)

According to the AACR study, for those patients who respond and live at least two years, there is a clear plateau in long term survival: 48% were still alive after two years, and it slowly declined to 34% after five years. This includes people who died of all causes, including non-cancer-related causes.

This study received widespread press coverage, including the Wall Street Journal and Washington Post. The Journal said that the results suggested that patients who survive for more than four years "are highly unlikely to relapse. That is essentially an unheard-of result in advanced cancer. The treatments appear to have enabled their immune systems to eradicate or take control of their tumors."

What does this mean for me and other patients with metastatic bladder cancer who are taking nivolumab? Of course, these other studies are of a different cancer, and each cancer has its own tendencies. But because the drug targets the same PD-1/PD-L1 mechanism, it is possible to extrapolate these data to my cancer. It suggests that we should see similar results for other cancers that have that same mechanism, including metastatic bladder cancer.

Patients with mets BC only first received nivolumab in 2014, so it will be six years before we see similar data for us. I'm expecting to see the first published report on nivolumab and mets BC next month, in conjunction with the 2016 AACO meeting. But this is very encouraging news. It suggests that patients like me who have responded to nivolumab have significantly better chances of long-term survival that any other type of non-immunotherapy. And perhaps the response truly will be durable. Dare I think that Opdivo may actually cure my cancer? The data isn't there yet, but there is reason to hope.

Thursday, April 7, 2016

CR 290: 29th infusion

My 29th infusion of nivolumab (Opdivo) was unremarkable. Dr. Hahn was backed up and I had to wait nearly two hours after my scheduled appointment time, but since my drug had already been released based upon my labs, it just meant I could walk upstairs for my infusion. I also managed to avoid any significant dermal toxicity issues in the past two weeks - a bit of itching on my scalp, but lice will do that. My next CT scan is for early May, and I'm just hoping that it is likewise unremarkable, which would be remarkable.

Monday, April 4, 2016

CR 287: Advances in Immunotherapy

A good review article titled Advances in Cancer Immunology and Cancer Immunotherapy was published on February 26, 2016 in Discovery Medicine. While not specific to bladder cancer, the article provides a good snapshot of the promise that immunotherapy is offering metastatic cancer patients. One of the charts in the article identify the current immunotherapy drugs that are being tested. None have yet been approved for bladder cancer, but many (including nivolumab) are being tested. I'm hopeful that in a few years there will be a lot more arrows in the quiver of oncologists to shoot at this savage disease.

Friday, April 1, 2016

Arthur Wellington Weart Brothers

The following obituary was published in the Salt Lake Deseret News on April 2, 2016:

Arthur Wellington Weart Brothers passed away March 30, 2016, after a very full life, very well lived.

Born in Salt Lake City on December 2, 1930, to Hilda Von Erxleben (nee Peacock) from Bath, England and Arthur Weart from Vancouver, Canada. His mother parted from his father in the middle of the Depression, when Art was an infant. In desperation at not being able to provide for him, his mother gave him up for adoption. He lived his early years in many foster families and multiple schools, but he was later adopted by Harrison S. and Dorothy Brothers.

He attended Granite High School until, at 17, he joined the Air Force in December of 1946 where he trained as a radio mechanic. Graduating at the top of his class, he declined an offer to stay at Scott Air Force Base as an instructor, and when the Korean War commenced, he was shipped to Nagoya, Japan where he was assigned as a radio mechanic to the 5th Air Force headquarters. He was later stationed in North Korea where he supported Marines coming ashore by repairing boilers, setting up electricity and salvaging, repairing and setting up field phones, control towers and switchboards. After nearly 5 years in the Air Force, and having been awarded a Bronze Star, he was released as a sergeant in 1952, in time to start school at the University of Utah in the fall where he studied business.

After college, he worked briefly in Manhattan and then in Los Angeles. He later built a radio telephone system for boaters on Lake Mead. He became increasingly aware of unmet needs for telephone communication in rural areas where there was no telephone access at all, just the postal service. Puzzling through the legalities and regulatory complexities of telecom law, he applied to the Nevada Public Utility Commission to serve Montello, Nevada and Grouse Creek, Utah as a company he called "Silver Beehive Telephone Company" - because Nevada was the Silver State, and Utah was the Beehive State. Later he shortened the name to Beehive Telephone Company. The Nevada Public Service Commission shot him down but later, the Utah Public Service Commission granted him a Certificate of Necessity. Art wrote in his diary, "God hath made me a telephone company." Art and his young wife, Tina Brothers, set off to rural Box Elder County to bring telephone service to Grouse Creek.

True to his nature, Art created it all out of nothing and sweat equity. He used wire he got from military surplus and switching equipment given him by another phone company. He hand-built the original long distance line, climbing every pole, hanging every cross arm, stringing every piece of wire on every insulator. When he was done, Grouse Creek residents had telephone communications, and Art has since replicated this in every unserved area he could find and anywhere that Ma Bell wouldn't serve. He was the CEO, the chief financial officer, and the lineman. He served his remote areas by piloting his own planes, sometimes landing on public highways when necessary. Today, Beehive Telephone - now known as Beehive Broadband -- employs 48 people and provides state-of-the- art service in telephone and broadband.

His life became legendary for its inventiveness and resourcefulness. He was twice featured in the Wall Street Journal and for years, he wrote a column in a national magazine for rural telephone companies, inspiring and entertaining his readers by recounting his many adventures all over the world. He often received letters from mothers whose children had been saved from illness because they could (finally) telephone a doctor or a hospital, and for years, he maintained a telephone number ("1-234-567-8910") where children could call and talk to "Santa Claus" - which caused Mountain Bell great consternation.

Arthur is survived by his sister, Bonnie Cavill, and his children, Arthur Jr., Ravonne and Kenneth, whose success in life made him extremely proud. He is also survived by Rita Brothers, his beautiful and much beloved wife whom he met in Russia, and their daughter, Z Brothers. He is predeceased by his young daughter, Anastasia, whom he adored. His many employees at Beehive Telephone will remember him and work hard to honor his work and grow his legacy.

Services will be held at Evans and Early Mortuary, 574 East 100 South, in Salt Lake City, Utah on Monday, April 4, 2016, at 11:00 a.m. A viewing will be held one hour prior to the funeral services at 10:00 a.m. A graveside service will follow at Mount Olivet Cemetery, and a lunch will be served thereafter at the Alta Club.

The following column was published in the Salt Lake Tribute on April 4, 2016:

Rolly: Remembering Art Brothers, the bane of Ma Bell, the FCC and rural sheriffs

By

One of Utah's more colorful characters was a gregarious entrepreneur named Art Brothers, who drove local, state and federal regulators crazy.

He died in Salt Lake City last week at age 85 of causes incident to age.

Brothers owned Beehive Telephone Co., which served some remote areas in Utah and other spots in the West that otherwise would not have telephones.

One area he served until his license was revoked by the Federal Communications Commission (FCC) was to a brothel in Nevada. He used radio telecommunications — authorized for emergencies only —from a boat on Lake Mead.

During the revocation hearing, an FCC commissioner noted that most of the calls from the brothel were to the closest liquor store. He asked how that was an emergency.

Brothers shot back: "If you've never seen a cathouse out of booze, you don't know what an emergency is."

He was able to operate in out-of-the-way places with sparse populations because he did much of the line work himself, tapping parts and gadgets he personally crafted. He even owned a small plane he flew to reach his customers.

That landed him in trouble with some sheriffs because he insisted on touching down on rural highways. He even hit a couple of cars during his landings, one causing serious injuries to a truck driver in Millard County.

His plane was confiscated one time in Millard County for landing on a highway and then taxiing into a nearby town, where he filled up his tank at a gas station.

"I kind of sympathize with the small-business man to a degree. He needs his airplane to get around," Millard County Sheriff Ed Phillips told United Press International (UPI) Salt Lake City Bureau Chief Peter Gillins, who wrote a profile of Brothers in 1980. "But we couldn't let him continue landing on the road."

Brothers, however, sneaked into the impound lot, taxied the plane around some barricades and flew away.

Beehive served about 150 customers spread throughout an area about 10 times the size of Delaware, according to the UPI profile.

"They live on remote ranches and in towns like Grouse Creek, Park Valley, Garrison, Eskdale and Ticaboo," Gillins wrote.

Brothers frequently battled then-telephone giant Mountain Bell, which had to pay Beehive Telephone thousands of dollars in long-distance interconnect fees from the customers he was licensed to serve.
David Irvine, a former PSC commissioner who later became Brothers' attorney, said Mountain Bell's lawyers "went nuts" over a moneymaking scheme Brothers concocted involving Santa Claus.
"Art was able to secure the number 12345678," Irvine said. "That was before you had to punch in the area code, so hitting 1 would automatically make it a long-distance call. He then put a recording on that line from Santa Claus to all the little boys and girls.

"Kids often punched numbers in sequence while playing on the phone and then get Santa Claus," Irvine said. "So they would call the number over and over again. And each time, it was money in Art's pocket because Mountain Bell had to pay him the long-distance fees. And Mountain Bell would get all the complaints because the long-distance charges would show up on their bill."

Hey, at least he never landed his plane in Ma Bell's parking lot.


Arthur Wellington Weart Brothers, passed away March 30, 2016, after a very full life, very well lived.
Born in Salt Lake City on December 2, 1930, to Hilda Von Erxleben (nee Peacock) from Bath, England and Arthur Weart from Vancouver, Canada. His mother parted from his father in the middle of the Depression, when Art was an infant. In desperation at not being able to provide for him, his mother gave him up for adoption. He lived his early years in many foster families and multiple schools, but he was later adopted by Harrison S. and Dorothy Brothers. He attended Granite High School until, at 17, he joined the Air Force in December of 1946 where he trained as a radio mechanic. Graduating at the top of his class, he declined an offer to stay at Scott Air Force Base as an instructor, and when the Korean War commenced, he was shipped to Nagoya, Japan where he was assigned as a radio mechanic to the 5th Air Force headquarters. He was later stationed in North Korea where he supported Marines coming ashore by repairing boilers, setting up electricity and salvaging, repairing and setting up field phones, control towers and switchboards. After nearly 5 years in the Air Force, and having been awarded a Bronze Star, he was released as a sergeant in 1952, in time to start school at the University of Utah in the fall where he studied business.
After college, he worked briefly in Manhattan and then in Los Angeles. He later built a radio telephone system for boaters on Lake Mead. He became increasingly aware of unmet needs for telephone communication in rural areas where there was no telephone access at all, just the postal service. Puzzling through the legalities and regulatory complexities of telecom law, he applied to the Nevada Public Utility Commission to serve Montello, Nevada and Grouse Creek, Utah as a company he called "Silver Beehive Telephone Company" - because Nevada was the Silver State, and Utah was the Beehive State. Later he shortened the name to Beehive Telephone Company. The Nevada Public Service Commission shot him down but later, the Utah Public Service Commission granted him a Certificate of Necessity. Art wrote in his diary, "God hath made me a telephone company." Art and his young wife, Tina Brothers, set off to rural Box Elder County to bring telephone service to Grouse Creek. True to his nature, Art created it all out of nothing and sweat equity. He used wire he got from military surplus and switching equipment given him by another phone company. He hand-built the original long distance line, climbing every pole, hanging every cross arm, stringing every piece of wire on every insulator. When he was done, Grouse Creek residents had telephone communications, and Art has since replicated this in every unserved area he could find and anywhere that Ma Bell wouldn't serve. He was the CEO, the chief financial officer, and the lineman. He served his remote areas by piloting his own planes, sometimes landing on public highways when necessary. Today, Beehive Telephone - now known as Beehive Broadband -- employs 48 people and provides state-of-the- art service in telephone and broadband. His life became legendary for its inventiveness and resourcefulness. He was twice featured in the Wall Street Journal and for years, he wrote a column in a national magazine for rural telephone companies, inspiring and entertaining his readers by recounting his many adventures all over the world. He often received letters from mothers whose children had been saved from illness because they could (finally) telephone a doctor or a hospital, and for years, he maintained a telephone number ("1-234-567-8910") where children could call and talk to "Santa Claus" - which caused Mountain Bell great consternation.
Arthur is survived by his sister, Bonnie Cavill, and his children, Arthur Jr., Ravonne and Kenneth, whose success in life made him extremely proud. He is also survived by Rita Brothers, his beautiful and much beloved wife whom he met in Russia, and their daughter, Z Brothers. He is predeceased by his young daughter, Anastasia, whom he adored. His many employees at Beehive Telephone will remember him and work hard to honor his work and grow his legacy.
Services will be held at Evans and Early Mortuary, 574 East 100 South, in Salt Lake City, Utah on Monday, April 4, 2016, at 11:00 a.m. A viewing will be held one hour prior to the funeral services at 10:00 a.m. A graveside service will follow at Mount Olivet Cemetery, and a lunch will be served thereafter at the Alta Club.
Published in Deseret News from Apr. 2 to Apr. 4, 2016 - See more at: http://www.legacy.com/obituaries/deseretnews/obituary.aspx?page=lifestory&pid=179485483#sthash.YuvzKq2T.dpuf
Arthur Wellington Weart Brothers, passed away March 30, 2016, after a very full life, very well lived.
Born in Salt Lake City on December 2, 1930, to Hilda Von Erxleben (nee Peacock) from Bath, England and Arthur Weart from Vancouver, Canada. His mother parted from his father in the middle of the Depression, when Art was an infant. In desperation at not being able to provide for him, his mother gave him up for adoption. He lived his early years in many foster families and multiple schools, but he was later adopted by Harrison S. and Dorothy Brothers. He attended Granite High School until, at 17, he joined the Air Force in December of 1946 where he trained as a radio mechanic. Graduating at the top of his class, he declined an offer to stay at Scott Air Force Base as an instructor, and when the Korean War commenced, he was shipped to Nagoya, Japan where he was assigned as a radio mechanic to the 5th Air Force headquarters. He was later stationed in North Korea where he supported Marines coming ashore by repairing boilers, setting up electricity and salvaging, repairing and setting up field phones, control towers and switchboards. After nearly 5 years in the Air Force, and having been awarded a Bronze Star, he was released as a sergeant in 1952, in time to start school at the University of Utah in the fall where he studied business.
After college, he worked briefly in Manhattan and then in Los Angeles. He later built a radio telephone system for boaters on Lake Mead. He became increasingly aware of unmet needs for telephone communication in rural areas where there was no telephone access at all, just the postal service. Puzzling through the legalities and regulatory complexities of telecom law, he applied to the Nevada Public Utility Commission to serve Montello, Nevada and Grouse Creek, Utah as a company he called "Silver Beehive Telephone Company" - because Nevada was the Silver State, and Utah was the Beehive State. Later he shortened the name to Beehive Telephone Company. The Nevada Public Service Commission shot him down but later, the Utah Public Service Commission granted him a Certificate of Necessity. Art wrote in his diary, "God hath made me a telephone company." Art and his young wife, Tina Brothers, set off to rural Box Elder County to bring telephone service to Grouse Creek. True to his nature, Art created it all out of nothing and sweat equity. He used wire he got from military surplus and switching equipment given him by another phone company. He hand-built the original long distance line, climbing every pole, hanging every cross arm, stringing every piece of wire on every insulator. When he was done, Grouse Creek residents had telephone communications, and Art has since replicated this in every unserved area he could find and anywhere that Ma Bell wouldn't serve. He was the CEO, the chief financial officer, and the lineman. He served his remote areas by piloting his own planes, sometimes landing on public highways when necessary. Today, Beehive Telephone - now known as Beehive Broadband -- employs 48 people and provides state-of-the- art service in telephone and broadband. His life became legendary for its inventiveness and resourcefulness. He was twice featured in the Wall Street Journal and for years, he wrote a column in a national magazine for rural telephone companies, inspiring and entertaining his readers by recounting his many adventures all over the world. He often received letters from mothers whose children had been saved from illness because they could (finally) telephone a doctor or a hospital, and for years, he maintained a telephone number ("1-234-567-8910") where children could call and talk to "Santa Claus" - which caused Mountain Bell great consternation.
Arthur is survived by his sister, Bonnie Cavill, and his children, Arthur Jr., Ravonne and Kenneth, whose success in life made him extremely proud. He is also survived by Rita Brothers, his beautiful and much beloved wife whom he met in Russia, and their daughter, Z Brothers. He is predeceased by his young daughter, Anastasia, whom he adored. His many employees at Beehive Telephone will remember him and work hard to honor his work and grow his legacy.
Services will be held at Evans and Early Mortuary, 574 East 100 South, in Salt Lake City, Utah on Monday, April 4, 2016, at 11:00 a.m. A viewing will be held one hour prior to the funeral services at 10:00 a.m. A graveside service will follow at Mount Olivet Cemetery, and a lunch will be served thereafter at the Alta Club.
Published in Deseret News from Apr. 2 to Apr. 4, 2016 - See more at: http://www.legacy.com/obituaries/deseretnews/obituary.aspx?page=lifestory&pid=179485483#sthash.YuvzKq2T.dpuf

Thursday, March 24, 2016

CR 276: 28th Opdivo infusion: drum, drum

Today's infusion was uneventful. Hopkins and Kaiser got all their ducks in a row, and my labs that Kaiser did on Tuesday expedited the release of my drug today. To my pleasant surprise, I did not develop a rash after my 27th infusion two weeks ago. I kept waiting for those itchy nodules to appear. I didn't feel sad that the angel of rash passed me by. Or maybe I got a placebo infusion instead. Like most things in life, I'll wait and see what happens next.

During my meeting with Dr. Hahn, he told me to expect publication of the interim results from this trial in connection with the ASCO meeting. Dr. Hahn could not promise whether that data would provide much guidance to me, however, since I am in the leading edge group of people getting nivolumab for mets bladder cancer. But he said that we could look at data from other nivolumab studies with other cancers, as well as data from other immunotherapy drugs, and extrapolate from that. He'll be there to help me along. Since there will be a lot more information available in the next few months, I'll be patiently drumming my fingers until then.

<drum, drum>

Meanwhile, spring is springing in the mid-Atlantic, and I'm enjoying the warmer weather. I've been busy coordinating the finishing of our lake house, and collecting furnishings both so we can use it and to help it sell. In case it does not sell quickly, we're going to make as much use of it as we can.

<drum, drum>

Jennifer and I continue to noodle over future plans. The whole idea of making long term plans still feels a bit strange to me, kind of like we're tempting fate. But like Simba, I walk on the wild side. I laugh in the face of danger. So I have started to plan, and God laughs. Nevertheless, Jennifer and I have decided in principle to simplify and downsize as our nest empties. We have not yet settled on how we'll do that, or when, or where we'd go. There's no rush, however: As long as I'm in this clinical trial, it makes little sense to move. I expect we'll be here for at least the next year or so.

For the next few months, we have enough on our plate: getting the lake house on the market; a family gathering in Florida in April; Jennifer's graduation from her MSW program in May; Garrett's graduation from high school in June and his likely departure on a mission in July; and Chelsea giving birth to our first grandson in August. That should keep us occupied for a while.

<drum, drum>

Thursday, March 10, 2016

CR 262: 27th infusion, rash decisions

After my 26th infusion two weeks ago, I had a new rash develop around my neck and upper chest. It was not as dense as the rash around my calves that developed after infusion #25, but it still itched. It was like I had 50 mosquito bites around my neck.  I applied a topical corticosteroid and took Benadryl every 4-6 hours and muddled through. I think it's strange how my immune system is reacting in different ways to the same doses of nivolumab. Dr. Hahn said that I should continue to do what I had been doing, and if the next rash advanced to a grade 2, he'd probably add a steroid into my next infusion.

Effective March 1, I joined Kaiser Permanente's Medicare Advantage plan and met with three doctors in three days, all of whom promised to coordinate with Hopkins and ease the logistical burden. On Tuesday I had my lab work done at Kaiser's Tyson's Corner facility, and it was faster than Labcorp. I found out today, however, that Kaiser did not report the lymphocyte percentages, which is a required data point before the pharmacy will compound my nivolumab. That caused a delay in getting my infusion. Another delay was caused by my port not giving a consistent blood return, so I ended up having an IV while my port was flushed with drano or whatever they use to dissolve blood clots. I expected some transitional hiccups so I'm just rolling with it.

Dr. Hahn and I discussed the newer data regarding nivolumab durability.  In his position as chair of the ASCO immunotherapy review committeee, he's starting to see some of the recent reports. He couldn't give me any details yet since he does not have all the data and what he does have has not been cleared for publication, but he said that it shows that nivolumab is working in a significant number of patients. He said that other immunotherapy drugs were also showing great promise. The data should be released in a month or so.

Dr. Hahn said that some of the future considerations for immunotherapy include what options there are if one type of immunotherapy fails: can patients try a different drug? Should they consider combination therapy, and if so, with what drugs? Many different combination therapies are bring evaluated in trials, but it will be some time before there are good phase III trials comparing different combination therapies. That discussion reminded me of how oncologists are not expecting immunotherapies to be curative, but are instead being used to prolong the lives of mets cancer patients.

I asked Dr. Hahn if there was anything I could hang my hat on regarding my own expectations. I noted that, prior to last summer's announcement of my complete response, I had been planning my life in no more than 3 months chunks, living day to day and planning from scan to scan. Could I now begin to think that I might have a more normal life, I asked? Dr. Hahn shrugged and said there was no way to know. The data simply was not available to form a basis for any predictions. He could not say if I might have years of life with no evidence of disease, or if my mets might come rushing back without warning. Likewise, there was insufficient data to say whether any disease progression might be slow, or as sudden as falling off a cliff.

I noted how I was now retired, that my nest might be empty by the end of this year, and that Jennifer and I have been talking about our options. That discussion was made difficult by not having any basis to assume how long I might live. Dr. Hahn apologized for the lack of data and empathized with the difficulty in making decisions with an uncertain horizon. As of now, there's not a whole lot of insight he could add. At least he didn't say that I shouldn't buy green bananas.

For now, Jennifer and I have set the following goals for the next few months: a family gathering in Florida next month; Jennifer's MSW graduation in May; Garrett's graduation from high school in June and his likely departure in July on a two year mission for our church; a trip to Utah in August for the birth of our third grandchild. In all the spare time I'll be doing my long-ignored honey-do list We only have vague ideas of what we'll do in the fall. Maybe a few trips here and there, but nothing too long since I want to continue with my clinical trial through February of 2017, assuming all continues to go well.

This spring we also intend to put our lake house on the market. It was badly damaged last spring due to a broken pipe, and the entire interior was gutted and rebuilt. We bought it near the top of the market in 2005, and I'm just hoping to break even on it. We want down there on Tuesday to check it out and also get our boat out of the shop. I blew the engine last fall and after some dithering decided to have a new motor installed. It was a beautiful spring day in the 80s and we spent the afternoon on the water. It was a relaxing day, and reminded me of how grateful I am for each day.