Saturday, June 6, 2015

Mets Day 1151: My wife's church talk on service and caregiving

Our church has an all-lay clergy, and members of the congregation take turns speaking at the primary congregational meeting. I've posted a couple of my church talks; following is a recent talk by Jennifer, my wonderful wife and patient caregiver during my cancer journey. I am posting with her permission.


            So, Brother B. called me a couple of days ago as a pinch speaker for today as the scheduled speaker had to go out-of-town unexpectedly.  Now, I don’t recommend short notice to speak in sacrament meeting, but I am grateful for the opportunity to share some thoughts with you about service.
            A great example of unselfish service is the late Mother Teresa of Calcutta, whose vow committed herself and her fellow workers to “wholehearted free service to the poorest of the poor.”  She taught that “one thing will always secure heaven for us—the acts of charity and kindness with which we have filled our lives.”  Mother Teresa stated that “we can do no great things, only small things with great love.”  When this wonderful Catholic servant died, the First Presidency’s message of condolence declared that “Her life of unselfish service is an inspiration to all the world, and her acts of Christian goodness will stand as a memorial for generations to come.”  That is what the Savior called losing our lives in service to others.
            What is service, and why is it so important in the gospel of Jesus Christ?  We are commanded to serve one another.  The first commandment is to love God.  And the second is like unto it, Thou shalt love thy neighbour as thyself.  We demonstrate our love when we help and serve each other.
            Elder Steven E. Snow said that as we serve in our various church callings, we bless the lives of others.  In missionary work, lives are changed as people learn of the gospel of Jesus Christ and receive a testimony of its truth.  By the sacred work in the temple, we bless the lives of those who have gone on before us.  In gospel service, we have the privilege to teach others, to strengthen the youth, and to bless the lives of the little children as they learn the truths of the gospel.  In church service, we learn to give of ourselves and to help others.
            President Spencer W. Kimball, a great example of service, said: “God does notice us, and he watches over us.  But it is usually through another mortal that he meets our needs.  Therefore, it is vital that we serve each other in the kingdom.”  The responsibility of service in the Church, however, does not relieve us of our responsibility to serve our families and our neighbors.  President Kimball went on to warn, “None of us should become so busy in our formal Church assignments that there is no room left for quiet Christian service to our neighbors.”
            We also have a responsibility to render service in our communities.  We should work to improve our neighborhoods, our schools, our cities, and our towns. We can commend those in our midst who, regardless of their political persuasion, work within our local, state, and national governments to improve our lives.  Likewise, we can commend those who volunteer their time and resources to support worthy community and charitable causes, which bless the lives of others and make the world a better place.
            Service changes people.  It refines, purifies, gives a finer perspective, and brings out the best in each one of us.  It gets us looking outward instead of inward.  It prompts us to consider others’ needs ahead of our own.  Righteous service is the expression of true charity, such as the Savior showed.
            Service increases our spirituality.  To explore how it does, I’d like to share with you briefly ten aspects about service from Elder Derek A. Cuthbert.  First, service helps us establish true values and priorities by distinguishing between the worth of material things that pass, and those things of lasting, even eternal, value.  If you would find yourself, learn to deny yourself for the blessing of others.  Forget yourself and find someone who needs your service, and you will discover the secret to the happy, fulfilled life.
            Second, service helps us establish a righteous tradition.  This is so necessary, particularly among young people.  Wise parents will provide service opportunities in the home for their children from an early age.  Growing up with this tradition will blossom into community service and Church service.  It will develop a spirit of volunteerism in a world where people more often ask, “What’s in it for me?”  The Lord has counseled: “For behold, it is not meet that I should command in all things; …“Verily I say, men should be anxiously engaged in a good cause, and do many things of their own free will, and bring to pass much righteousness.” (D&C 58:26–27.)
            Third, service helps us overcome selfishness and sin.  Sin is for one’s own ends, not another’s—certainly not for the Lord’s ends.  Service, on the other hand, is unselfish and constitutes a positive power for good.
            Fourth, not only does service overcome selfishness and sin, but it helps to recompense for sin.  We can express regret and feel remorse for things done wrong, but full repentance should include recompense, such as giving service allows.
            Fifth, service helps us generate love and appreciation.  We come to know people by serving them—their circumstances, their challenges, their hopes and aspirations.
            Sixth, service is the principal way of showing gratitude to the Savior.  We need to fill ourselves up with gratitude for His redeeming love, His infinite atoning sacrifice, His obedience to the will of the Father.  As we become full of gratitude, it overflows into service, and “inasmuch as [we] have done it unto one of the least of these [his] brethren, [we] have done it unto [Him].” (Matt. 25:40.)
            Seventh, service channels our desires and energies into righteous activity.  Every son and daughter of God is a storehouse—even a powerhouse—of desires and energies, which may be used for good or evil.  This great potential needs to be harnessed to bring blessings to others.
            Eighth, service helps us cleanse ourselves and become purified and sanctified.  Not being perfect, are we not all sinners?  Yes, we all need the redeeming and atoning blood of Christ to purge us of our sins.  How is this accomplished? The way is through Christlike service.
            Ninth, charitable service helps us do as the Savior did, for was not His whole ministry one of reaching out and helping, lifting and blessing, loving and caring?  Jesus declares, “I am among you as he that serveth” (Luke 22:27), and again, “For I will raise up unto myself a pure people, that will serve me in righteousness” (D&C 100:16).
            Tenth, service helps us to get to know the Savior, for “how knoweth a man the master whom he has not served?” (Mosiah 5:13.)  As we immerse ourselves in the service of others, we find our spiritual selves and come unto Him.
            In all of these ways, righteous service brings us nearer to Christ, increases our spirituality, and brings others likewise.  As we give Christlike service, it helps us grow spiritually, “[put] off the natural man and [become] a saint” (Mosiah 3:19)—that is, one who is honestly trying to follow the Savior and doing what He would want us to do.
            I’d now like to focus on a specific type of service: caregiving, which I’ve experienced for the past three and a half years as a cancer caregiver to my husband, Ken.  I’ve learned much spiritually, physically, emotionally, and spiritually by serving in this way, and recently received this letter from a far-away friend in need:
Hi Jennifer,
            I’ve thought about you many times over the past few months.  I wonder how you, Ken, and your family are doing.  I moved in with my parents this winter to help care for my mother.  She has been bedridden for three months in excruciating pain.  I've had a very full plate dealing with her care, doctor's visits, the cooking and cleaning, working part time and trying to build my business.  I have been isolating from friends and finally realize I need to come up for air and reach out to the people in my life who I care about and want to maintain contact with.
            I didn't realize being a caregiver was so incredibly hard and emotionally draining.  That's one of the reasons I have thought about you so much over the past few months.  I've wondered how you are dealing with it and how you are coping emotionally.  I'd love to know about any tools you are using to assist with your day to day situation.  I find there is never enough time in the course of a day to do what needs to be done, so I feel like I'm always running but standing in place.  My mother isn't terminally ill, just in chronic debilitating pain.  I don't know how to gear myself up for the possibility that she could live like this for years.
            I came back into town on Monday at noon and immediately drove to my job.  After that, it was back to my parents’ house to care for my mother and learn about how she fared over the weekend.  I read all the medication logs we keep, pain level notes, conversations with doctors, etc.
            I've started seeing a counselor to have an outlet for the emotional turmoil I've been going through in the past few months.  It helps, but I'd also like to have contact with people who are in similar situations.  I realize I need to build a support system for myself while I'm part of my mother's care giving team.
             I'm making a commitment to be better at keeping in touch.  It's part of my self-care in this chaos.  Miss you!  Love, your friend
And my response to her:
Hi, my friend –
            It's good to hear from you - sounds like you're juggling many activities and concerns in life.  Although I don't have answers or advice, I can definitely empathize with your situation, and will share some caregiving insights and ideas to consider - take what you want, leave the rest.
             First, in reading through your letter, it seems that you're already aware of several effective tools for self-care, especially during the intensity of caregiving:  You said "I finally realize I need to come up for air and reach out to the people in my life who I care about and want to maintain contact with".  This concept is critical in caregivers' self-care, as is having healthy outlets for the swirling mix of emotions often inherent in caregiving - such as maintaining involvement in hobbies, working with a skilled counselor, and having contact with people who are in similar situations.  You're the best person to ask what tools you need in a support system for yourself while you're part of your mother's caregiving team - what are your spiritual, physical, emotional, and mental needs and how can they best be met?  Which of them are non-negotiable, and which of them are flexible and sometimes optional (needs vs. wants)?
             As caregivers, it's essential to pace ourselves and take good care of ourselves, as no one else knows, comprehends, nor necessarily attends to our needs in these difficult times.  Caregivers do best when we meet our need for food, water, sleep, exercise, prayer, meditation, and use whatever tools work best for us to "relax" or at least decompress during stressful times.  Initially in caregiving, we likely experience the effects of intense emotional whiplash, so it's wise to be gentle with and kind to ourselves as we transition from being sprinters in navigating difficulties, to pacing ourselves in the marathon of some types of caregiving.  Perhaps we can discuss our situation with a few trusted people who can help us move through the caregiving journey with at least some degree of dignity and grace (or sometimes not!)  We can learn that it's okay and healthy to lean on folks for support in this process.  During the most intense caregiving times, hopefully we can call on friends in our church community and/or neighborhood to help us with caregiver breaks, preparing meals, and doing other service, with one of them designated to coordinate these efforts so we can focus our energies on regaining and maintaining our balance.  We also can have spiritual advisors and trusted confidants who assist us personally.
             Hopefully, some of the above will help in releasing your feeling of running but standing in place, so that you can experience the feeling of stillness in motion, as caregiving is rarely static nor predictable.
             Take good care of yourself, and I'll keep you and your mother in my prayers.  Love, Jennifer
            Elder Jeffrey R. Holland gave wise counsel to caregivers in the October 2013 General Conference: QUOTE “Watch for the stress indicators in yourself and in others you may be able to help.  As with your automobile, be alert to rising temperatures, excessive speed, or a tank low on fuel.  When you face “depletion depression,” make the requisite adjustments.  Fatigue is the common enemy of us all—so slow down, rest up, replenish, and refill.  Physicians promise us that if we do not take time to be well, we most assuredly will take time later on to be ill.”
            “If you are a caregiver, try not to be overwhelmed with the size of your task.  Don’t assume you can fix everything, but fix what you can.  If those are only small victories, be grateful for them and be patient.  Dozens of times in the scriptures, the Lord commands someone to “stand still” or “be still”—and wait.  Patiently enduring some things is part of our mortal education.”
            “For caregivers, in your devoted effort to assist with another’s health, do not destroy your own.  In all these things be wise.  Do not run faster than you have strength.  Whatever else you may or may not be able to provide, you can offer your prayers and you can give “love unfeigned.”  “Charity suffereth long, and is kind; … [it] beareth all things, … hopeth all things, endureth all things.  Charity never faileth.” CLOSE QUOTE
            Earlier this month, as a counselor in our ward’s Relief Society presidency, I attended an Association of Mormon Counselors and Psychotherapists conference, where one of the workshops was titled “Compassion Fatigue”.  Compassion fatigue is the gradual lessening of compassion over time leading to indifference, stress, anxiety, guilt, and decreased capacity to be authentic and present with another.  Contrast that with compassion satisfaction, which is positive feelings that helpers feel as a result of what they do, including a sense of fulfillment, motivation, and satisfaction of the impact one has on another.  Consider asking yourself: are the ways in which I serve leading me to experience compassion fatigue or compassion satisfaction?  In my good, better, best efforts, am I remembering to put on my own oxygen mask first before rushing off to help others with theirs?
            As many of you know, I’ve had and continue to have the privilege of participating in individual and family clinical social work, and am currently pursuing my Master of Social Work with an emphasis in expressive arts.  One of my most influential social work mentors is a woman named BrenĂ© Brown.  She has a Ph.D., is a licensed social worker and research professor at the University of Houston Graduate College of Social Work.  The main concept in her work is wholeheartedness, which includes letting go of exhaustion as a status symbol, productivity as self-worth, and anxiety as a lifestyle so that we can cultivate play, rest, calm, and stillness.  Calm is creating a perspective and mindfulness while managing emotional reactivity.  Stillness is not about focusing on nothingness; it’s about creating a clearing.  It’s opening up an emotionally clutter-free space and allowing ourselves to feel and think and dream and question.
            Many times in the scriptures, we read that Jesus Christ, after His numerous acts of service and caregiving efforts, retreated to the wilderness alone.  It’s my belief that Jesus Christ did so to cultivate calm and stillness as He regrouped and recharged through rest.  May we follow His example of unselfish service while simultaneously taking good care of ourselves as we serve others is my hope and prayer in the name of Jesus Christ, amen.

Friday, May 29, 2015

Mets Day 1143: Great article re nivolumab

On the eve of the ASCO conference, the Washington Post has released an interesting article on nivolumab, discussing how it and other immune therapies are changing the course of cancer. Also included is a helpful graphic explaining how nivolumab works. There is also discussion about the cost once they are approved; I'm just happy that I'm in a clinical trial and the drug is working for me.

Thursday, May 28, 2015

Mets Day 1142: Eighth Opdivo infusion

I returned home from Utah late on Tuesday (actually early Wednesday morning) so I could get my eighth round of nivolumab. There are no clinical trial locations for my trial in Utah or anywhere else within a thousand miles, and even if there was, it is apparently almost impossible to drop in at another location and get the experimental drug. So yesterday I went in for lab work, and this morning Jennifer and I braved the Washington beltway and I 95 to Baltimore, despite the conspiracy of the traffic gods to slow our way (semi overturned on the inner loop; two accidents between DC and Charm City, etc.).

I discussed with Dr. Hahn the fact that none of the abstracts for this week's ASCO meeting (the American Society for Clinical Oncologists, starting tomorrow in Chicago) discussed nivolumab and metastatic bladder cancer. Nivolumab was discussed in relation to other cancers in 74 other papers, however, as was other immunotherapy agents, such as MPDL3280A. Dr. Hahn was familiar with the literature, as he was on an ASCO panel that would summarize the most recent science regarding immunotherapy as a weapon against cancer. He said that he would have several discussions with his colleagues and representatives from Bristol-Myers Squibb about nivolumab and mets BC, and would bring back any news regarding durability.

I also asked Dr. Hahn about the confounding disparity between the different interpretations of my CT scans.  He said that he had personally measured my tumors in my last scan, and had compared them to the prior scans. He said that his measurements were in between the dimensions recorded by the radiologists.  He shrugged it off, noting that variations of a few millimeters were not a big deal. The main thing, he said, was that every one agreed that my tumors were substantially smaller than they were in the prior scans.

He asked if I had noticed any side effects.  Other than the left side of my neck being a little sore (which probably is from a bad night's sleep), there continues to be nothing of note. All of my labs were good - the nurse helping with my infusion said that they were better than his.  While I was getting my infusion, a massage therapist came by and offered a neck and shoulder massage, which Jennifer happily accepted. The massage therapist explained that a grateful family had wanted to create a way to help ease the stress in the chemo infusion area, and worked with Johns Hopkins to fund a roving masseuse.

After I was infused with my meds, Jennifer dropped me off at BWI so I could fly back to Utah and spend more time with my newest granddaughter, as well as Rose, Josh, and Chelsea. I'll be there through June 9, then will return home for round nine. Kirsten will fly to Utah after I leave, and she will be followed by Jennifer. I guess I can't keep Lily all to myself.

While in Utah, I made a couple of visits to the LDS Family History Library, to see if I could break through some barriers in researching the genealogy of my father's ancestors. He had been orphaned at a young age, and had relatively little information about his parents or their families.  I met with success, and was able to trace my dad's line back for several generations. I was able to document that my paternal grandfather was married four times (at ages 21, 25, 28, and 43, the last being to my grandmother). So far, I have not uncovered evidence that he sired any other children. He died in 1935, at age 50.

My paternal great-grandfather, by contrast, was a prominent citizen of Vancouver, British Columbia, being a barrister, member of the provincial assembly (including a stint as speaker), built the first Vancouver skyscraper in 1915, and has a mountain and glacier named after him.  While he was serving in the legislature and rallying his fellow citizens during Great War, his oldest son (my grandfather) renounced his Canadian citizenship and was naturalized a US citizen.

My paternal grandmother had one son by her first husband, in 1918.  She and my grandfather married in 1927, and my father was born in 1930.  He was her second child. She died when he was eight. Her father was a civil engineer, born in Prussia in 1847, emigrated to the US in the 1880s, and married my great-grandmother in Colorado in 1889. My grandmother was born in 1891. Her mother was born in Bath, England, in 1860, the oldest child of a fishmonger and merchant. My great-grandfather's family had sufficient means to employ a couple of servants around the turn of the century, and take several trips back to England. At times, my great-grandfather prefixed his surname with "von", the Prussian appellation of nobility, although I can find no basis for that assertion.

These all are facts that I have teased out of documents I've discovered in the past couple of weeks. To look at documents more than a hundred years old - census records, passenger manifests, oaths of marriage and citizenship - and glean the dry bones of those long dead. What stories must be behind those records! The wrenching decision to leave their home countries and come to America, the desire to cleave from the past, to reinvent oneself: I am descended of recent immigrants, seekers of fortune, a better life.

Friday, May 22, 2015

Mets Day 1136: More analysis of my May 5 CT scan: CR?

Last week Dr. Aygun at Johns Hopkins did a supplemental interpretation of my May 5 CT scan of my neck. It was posted on May 17, but I've been visiting family in Utah since May 14, and between my niece's wedding and the birth of my granddaughter, I didn't notice it until yesterday. Here's the text of the report (I've added hyperlinks):
RESULT: This report is dictated with specific measurement of index lesions as RECIST 1.1. Longest unidimensional measurement in mm for non-nodal disease. Short axis measurements for nodes.
Please see the original clinical report of the CT scan of the neck from 5/5/2015.
COMPARISON: 3/24/2015.

TARGET LESIONS:
TL1: Left level 5 lymph node measures 5 x 5 mm at slice position 335.7 compared to 9 x 12 mm previously.

TL2: Left level 4 lymph node measures 5 x 5 mm at slice position 362.7 compared to 7 x 9 mm previously.

NON-TARGET LESIONS: None

NEW LESIONS: None

IMPRESSION: CR (in the neck). All nodal target lesions are less than 10 mm.
Dr Aygun's results are dramatically different than the original interpretation of my May 5 scan by Dr. Idowu. In the initial results, Dr. Idowu wrote that "the left level 4 lymph node previously measuring 1.3 x 0.9 cm currently measures 1.3 x 0.7 cm." But according to Dr. Aygun's supplemental read, the left level 4 node previously was 7 x 9 mm (not 1.3 x 9 cm), and now measures 5 x 5 mm (not 1.3 x 7 cm). I do not understand how two different radiologists, looking at the exact same image, can conclude that the same tumor is either 1.3 x 0.7 cm, or 5 x 5 mm. That's a 50% difference!

In addition, Dr. Idowu, the radiologist who initially read the May 5 scan, looked at tumors on the left side of my neck at levels 3 and 4. Dr. Idowu wrote that the left level 3 lymph node previously measuring 1.5 x 1.1 cm currently measures 1.4 x 0.8 cm. Dr. Aygun did not measure that level 3 node, and simply wrote that there were no non-target lesions. How could a tumor be measured to be 1.4 x 8 mm by one doctor simply be missed by the second doctor?

Dr. Aygun has concluded that I have had "CR": a complete response (in the neck). But when I asked Dr. Hahn the same question at my last visit, he told me that it was too soon to say that I had a complete response, although he agreed that the short axis of my tumors was under 1.0 cm, so they were not "pathological" under the RECIST 1.1 guidelines. But he was unwilling to go as far as Dr. Aygun.

Although Dr. Aygun's reading would ordinarily be great news, I have a healthy level of skepticism over the results. I'll be asking Dr. Hahn some questions about this at my next appointment on May 28.


Monday, May 18, 2015

Mets Day 1132: A second granddaughter

I flew to Utah on May 14 for the wedding of my niece, and to await the birth of my second granddaughter to Chelsea and Josh. Chelsea went into labor early this morning, and this afternoon gave birth to Lily, 7 lbs 10 oz, 19" long, and absolutely beautiful. I had brought Rose to the hospital in the morning, then took her home for her nap while Chelsea had a fast and painless (2 push) delivery. After Rose awoke, I said, "Do you want to go see Lily?" and she shouted "Yes!"

Introducing Rose to her little sister was one of the most tender and beautiful things I have seen. Rose gently kissed her sister's cheek and was very interested in making sure Lily's hat was on. Rose kept looking over at her mom to make sure the baby wasn't still inside. Eventually, I rocked Lily while Chelsea and Josh spent time with Rose, playing and talking with her. Rose has no idea that her solar system has just added a second sun.

When I held Lily, I was amazed and humbled at how this tiny person was created. I believe that Lily, like all humans, have a spirit that was with God before birth. As Wordsworth wrote in Intimations of Immortality:
Our birth is but a sleep and a forgetting:
The Soul that rises with us, our life's Star,
Hath had elsewhere its setting,
And cometh from afar:
Not in entire forgetfulness,
And not in utter nakedness,
But trailing clouds of glory do we come
From God, who is our home:
Heaven lies about us in our infancy!
To think that it was not so long ago that Lily was with God, and is now adjusting to this new mortality. Today I was as close to heaven as any mortal may come.

I am so grateful that my life has been prolonged to see this day. I know that it is not through my actions that I survive against the odds: the clinical trial that is working on my cancer does not have the same effect on all metastatic bladder cancers (see this post for an example). I simply give thanks for each day, and find joy and rejoicing in my posterity.

Tuesday, May 12, 2015

Mets Day 1126: Seventh Opdivo infusion

Things I've learned from today's infusion of nivolumab through my clinical trial at Johns Hopkins:

1. Getting my lab work done the day before saves at least two hours on infusion day at Hopkins.

2. My port (over 3 years old) does not like to return blood. It takes infusions just fine, but when nurses try to draw blood through it, the tip of the port apparently buries itself into the tissue of the vein, blocking blood draws. Almost every time I've gone in, there have been some issues with my port. Today I got my infusion through an IV while a clot-busting drug was shoved into my port to dissolve whatever was precluding getting a return.

3. According to Dr. Hahn, it's too soon to say that I have had a complete response, even though my recent CT scan showed that all of my tumors had shrunk to under 1 cm in size. Dr. Hahn said that the line between a partial response and a complete response is a fuzzy one, but because my scan still detected the presence of tumors, I'm still waiting for a CR.

4.  There is still no published data on nivolumab on metastatic bladder cancer. But Dr. Hahn expects to see some new data at this month's annual meeting of ASCO in Chicago. Stay tuned for updates.

5. Bristol Myers Squibb has just announced a new Phase II trial for nivolumab in metastatic bladder cancer. Apparently it's been getting enough favorable reports from my trial that the company is moving forward with getting FDA approval for mets BC.

6. The plan is to stay the course and continue getting treatments for a while.

Wednesday, May 6, 2015

Mets Day 1120: Second clinical trial scan shows good results

Yesterday I had my second CT scan as part of the nivolumab clinical trial. This scan took place after I had received six of the experimental infusions, or 12 weeks after I started the trial. The first scan showed that my targeted tumors had shrunk by 50%. This scan showed that the tumors continued to shrink, although not at the same rate. Here's the key language from the neck scan:
Findings: Although possibly due to variation in slice selection and patient positioning, there is slight interval decrease in the size of the left level 3 lymph node as demonstrated on image 569 of series 4, now measuring 1.4 x 0.8 cm (previously 1.5 x 1.1 cm). The left level 4 lymph node previously measuring 1.3 x 0.9 cm currently measures 1.3 x 0.7 cm. Other smaller lymph nodes are either unchanged or smaller compared to the prior examination in the bilateral neck. There is no new lymphadenopathy. No mass or pathologic fluid collection is identified in the neck.
The scans of the chest and abdomen found no new tumors. The supraclavicular node is now "subcentimeter" in size and is "stable." There is no evidence of pulmonary embolisms, either. So the bottom line is that, in the past six weeks, the two target tumors shrunk by another 25%. Yay!

The only bad news is that, according to the neck scan, I am 82 years old (the abdomen and chest scan had my age correctly noted). I emailed the clinical trial nurse and said that she'd have to report accelerated neck aging as one of the side effects of the study. Her response: "I love your attitude and sense of humor."

I'll go in next week for my seventh infusion, and will talk with Dr. Hahn about the durability of the nivolumab therapy. As far as I can tell, there is no publicly released data regarding the durability of nivolumab on metastatic bladder cancer patients. Nivolumab was first tested on metastatic melanoma. A March 2014 report found that the results were durable for two or more years, and that some  patients had ongoing beneficial effects even after stopping therapy. A September 2014 report on the use of nivolumab on metastatic renal cell carcinoma also found durable results, with the best results going to those who stayed on the drug.  A November 2014 follow-up report on metastatic melanoma patients receiving nivolumab showed ongoing durability, with a median follow-up of 55 months, which according to the report "is the longest follow-up of an anti-PD-1 agent done to date." That report also said that, of the the patients who had an overall response, more than half were maintaining that overall response. And a April 9, 2015 review of immunotherapy trials published by the British Cancer Journal found that
The most extensive clinical experience with PD-1 antibodies has been obtained with both nivolumab and pembrolizumab, which have demonstrated highly durable response rates with acceptable toxicity in large phase I studies involving patients with advanced melanoma, NSCLC, renal cell carcinoma (RCC) and Hodgkin’s disease . . . .
None of these reports were specific to bladder cancer, however. Although there are a number of reports noting the fact that nivolumab is being tested on mets bladder cancer patients, I have not been able to locate any data on the durability on my type of cancer. The best I can do is to extrapolate from the data from other cancers. From what I've been able to gather, here are the conclusions that I am drawing:

1. Nivolumab is an effective immunotherapy agent on my metastatic bladder cancer.
2. I have had an objective response -- specific, measurable results -- as a result of the nivolumab.
3. I am continuing to see tumor shrinkage as a result of the nivolmab.
4. This last scan likely has put me in the category of a complete response, meaning that my metastatic tumors have shrunk to under 1 cm in size on the short axis.
5. I still have measurable disease, however, so I not yet at NED (no evidence of disease).
6. I should continue with the nivolumab as long as possible, since that is what has provided the best results to patients taking nivolumab for other cancers. So that means no trips away from Hopkins for more than two weeks. I can live with that.

median follow-up is 55 months, which represents the longest follow-up of an anti-PD-1 agent done to date,” - See more at: http://www.ajmc.com/conferences/SMR2014/Nivolumab-Shows-Durable-Response-in-Heavily-Pre-treated-Patients-with-Advanced-Melanoma#sthash.RLZL9hR2.dpuf
median follow-up is 55 months, which represents the longest follow-up of an anti-PD-1 agent done to date,” - See more at: http://www.ajmc.com/conferences/SMR2014/Nivolumab-Shows-Durable-Response-in-Heavily-Pre-treated-Patients-with-Advanced-Melanoma#sthash.RLZL9hR2.dpuf
median follow-up is 55 months, which represents the longest follow-up of an anti-PD-1 agent done to date,” - See more at: http://www.ajmc.com/conferences/SMR2014/Nivolumab-Shows-Durable-Response-in-Heavily-Pre-treated-Patients-with-Advanced-Melanoma#sthash.RLZL9hR2.dpuf