Spencer's finished the AT!

August 12, 2017

Today my son finished his thru-hike of the Appalachian Trail. He departed from Springer Mountain Georgia on March 11. Five months and one day later, he arrived on Mt. Katahdin in Maine. What an accomplishment!

Spencer dedicated his hike to the memory of his best friend, Chris Atwood, who died of a heroin overdose five years ago at age 21. Spencer's goal was to raise $21,000 for the Chris Atwood Foundation, which was founded to help prevent opiod addiction and to distribute nalaxone as needed. He's almost there - you can help him reach his goal by donating at https://www.crowdrise.com/fundraise-and-volunteer/donations/blazing-the-trail-to-recovery/TheCAF.

Notes from BCAN Think Tank day 3

2017 BCAN Think Tank Day 3

The day started with presentations by BCAN’s recipients of its young investigator awards: “Identifying Genomic Determinants of Chemoradiotherapy Response in Muscle-Invasive Bladder Cancer.” Kent Mouw, MD, PhD, Dana-Farber Cancer Institute, and “Role of antigen-specific immunity in BCG therapy for bladder cancer.” Niannian Ji, PhD, University of Texas Health San Antonio. These were followed by presentations by the 2017 John Quale Travel Fellows. These awards set BCAN apart from many other patient-founded cancer advocacy organizations, because they are targets to get more researchers involved in finding new therapies for bladder cancer.  

Breakout groups followed. There were a several that were of interest to me: the survivor’s working group intended to focus research on patient-centered outcomes; the presentation on restoring and enhancing sexual function after RC, chemotherapy, and other treatments for bladder cancer; a discussion of bringing precision medicine to bladder cancer therapy; and the session that Jennifer opted for, Unmet Educational and Psychosocial Needs across the Bladder Cancer Continuum. But I ended up attending the session on Novel Immuno-Combinations. The summary promised the following:

Antibodies targeting the programmed cell death protein 1/programmed death-ligand 1 (PD-1/PD-L1) axis have known therapeutic activity in patients with metastatic bladder cancer. However, only a 15-25% of patients will derive clinical benefit when treated with single agent therapy. Therefore, there is an urgent need to design optimal combinations to improve patient outcomes. Discussion highlights combination approaches to improve outcomes to front-line immunotherapy regimens as well as overcome acquired mechanisms of resistance to immune checkpoint blockade.  We will provide an overview of emerging preclinical data and contextualize the current clinical trial landscape of immunocombinations in urothelial cancer.

I figured that I should learn more about what therapy options were out there if and when my current remission failed and my cancer resumed its attempt to kill me. Along those lines, Dr. Andrea Apolo told me earlier in this conference that she had just opened a three drug trial with cabo, nivo and ipi, and that it looks promising. Maybe that's for me in the future.

Dr. Hahn introduced the session with a slide how 5 new immunotherapy drugs had been approved for mets BC in the past year, and more were in the pipeline. The challenge is how we select the appropriate drug for treatment. Chemotherapy works. But we’ve got an “embarrassment of riches” of therapies and targets. His slide had 55 different targets. If we were to do a 20 patient test for each one, that’s more than 1000 patients and years of data. It’s going to be a challenge to better design trials for efficacy and translational data.

Panelist # 1: Dr. Chris Hoimes explained how the different responses of patients was based upon spatial and temporal tumor heterogeneity. A patient with resistant subclones will be less likely to respond to therapy. Patients with high tumor heterogeneity has a much higher chance of dying sooner. (Lilu et al, Abs 4512, ASCO 2017). Post-treatment genomic alterations can enable those to become the dominant clone. Paradoxically, tumors with a higher baseline mutuation or noeantigen burden experienced a greater decrease with GmeCis (Lilu et al, Abs 4518, ASCO 2016). These data can help guide our decisions on future treatment decisions.

Drawing from studies of chemo+immunotherapy in lung and breast cancers, we can deduce that such combinations may be more effective for BC patients. In May 2017, FDA approved a combination of Pembrolizumab with chemo for mets Lung cancer. We don’t know exactly why this appears to work. A large phase III trial is underway. For breast cancer, the I-SPY2 study showed that patients that got combination of pembro and paclitaxel, then AC chemo, then surgery. Even triple negative patients were having good response rates. Side effects were manageable.

Urothelial cancer combination drug studies are underway, including GemCis chemo with ipi, pembro, atezo, and other immunotherapy drugs. We need more patients and await the data.

What is the rationale for combination therapy of chemo with immunotherapy? Chemo can induce immunogenic cell death, and immunotherapy can enhance tumor control. The two together can have a synergistic effect. Cisplatin may not bring around immunogenic cell death (ICD), but instead bring TCD. We’re rather see ICD than TCD.

The tumor microenvironment and metabolism considerations tell us that lower pH in the tumor interferes with the reproduction.

Conclusion: chemo and immunotherapy might be an attractive option for bladder cancer, either as neoadjuvant or adjuvant. There might even be a role for this combination in NMIBC. (See slide 16). The variables (slide 17) need to be better understood. For example, the timing – chemo first , or immunotherapy first, or concurrent? MSKCC is looking at that. Also to be determined is whether to give the full dose, or less than the full dose of chemo. Additional concerns (slide 18) are that steroids are usually given with cisplatin, but steroids don’t pay well with immunotherapy. 

Challenge #1: How does anyone actually survive MIBC? Neoadjuvant chemo followed by surgery provides the best odds for survival. But why are there differences/ We need to better understand clonal divergence and evolutionary pressures.

Challenge #2: No nodal disease at RC, but it shows up months later. (Markowitz Science 2017, Nxerova et al, Science 2017). This reflects changes in the tumor genomic landscape post-therapy.

Challenge #3: Mets with a transient response to therapy likely reflects tumor repair mechanisms. Identifying these omic changes should reveal why this is happening.

Tumors in “deep remission” still need to be followed and understood.

Panelist #2: Dr. Charles Drake, Columbia. Pathways and possibilities for immunotherapy. PD-1/PD-L1; CTLA-4; agonist antibodies; and metabolic and TME targets (IDO+A2A), and MANA from heaven – personalize vaccines? (non-personalized vaccines have been mostly unsuccessful).

When an antigen meets a tumor, the CD8T expresses PD-1. When that happens, the CD8 T cell expresses interferon, and that kills the tumor. We’re getting a better understanding of why that doesn’t work. You need to have ongoing antigen presentation for checkpoint inhibitors to work. With no antigens present at the tumor, immunotherapy will not work.

CTLA-4 (ipi and others) can help, but it has significant adverse events. We’re studying how to make CTLA-4 more tolerable in mouse models. A depleting antibody is one idea. The idea is a combined checkpoint blockage. For example, both anti-PD1 and an LAG-3 have an 80% response rate in mice.

The second idea is using immune agonist antibodies. OX40 works in mice, but not in humans. Why? We’re working on that. There are lessons that can be applied, but I don’t understand all of the technical details. Likewise for IDO pathways.

Panelist #3: Immune-Targeted Combinations, by Prof. Bart Cowles. Ipi plus nivo isn’t significantly better than nivo alone. But both are better than ipi alone. Other immunotherapy drug combinations likewise have been mixed. We’re not seeing the spectacular results we’d like to see. But the data is still early and young, and there are lots of exciting things to study. But let’s not get ahead of ourselves. We still have not properly tested immunotherapy combinations in bladder cancer. We know that BC is molecularly heterogeneous disease, and harder to find effective agents. The triple trial of cabo with nivo and ipi looks promising. Also promising is BISCAY for MIBC (four arms Durv+AZD4547; Durva+AZD8186; Durva+Lynparza; Durva+AZD1775). A targeted triplet therapy for mets BC with chemo and two immunotherapy drugs. It sounds “bat-shit crazy”, but it’s not.

Panelist #4: Dr. Naidoo, epigenetic therapy and immunotherapy. We’ve seen this tried with lung cancer, and it has shown better results than monotherapy. But it’s not a home run. There is a theory for epigenetic priming before immunotherapy. Sometimes it appears to work. Further studies are underway.

Combination studies with nivolumab are also underway in NSCLC’s. They appear to have better results. We need to move those studies into the BC realm.

Afternoon session:

Future Targets and Therapeutic Approaches–Beyond Immunotherapy, Matt Galsky, MD, Mount Sinai Hospital. Three new drugs are being tested.

1) Enfortumab Vedotin is having a very promising response. Response rate are in the 40-60%. This is a heavily pretreated population. There is a fairly robust response for patients with liver mets, which is a hard mets to reach. It’s a quite active agent. Patients have also had reductions in bone mets. These are areas that we don’t see activity in with most other drugs. We’ve sen steep reduction in bone pain in some patients. When it works, it’s really working well. ORR is 53%. Phase II study is planned. There is also a Phase Ib study with immunotherapy.

2) ADG-15ME. Small studies have a 50% response rate. Phase II studies are planned. The manufacturer may be shutting down, so we’re not sure of longer-term availability.

3) Sacituzumab Govitecan (IMMU-132) is a pan-epithelial antibody that reaches across tumor types. Small studies have suggested promise, with an ORR of 50%. Updated data will be presented at ESMO 2017.

These antibody-drug conjugates are a type of chemo-lite. They have promising second line responses. The question everyone is asking is whether these drugs can be combined with immunotherapy. We’re testing that. We also need to learn how to use them – dose frequency, total number of doses, etc.

Peter H. O’Donnell, MD, University of Chicago Medicine. Targeting angiogenesis. History: 1985 was the first year that MVAC was reported to work on urothelial cancer. 2012 was the first year immunotherapy was reported to work in urothelial cancer. The 30 intervening years was mainly spent rearranging cytotoxic deck chairs on the Titanic. We don’t want to say that about immunotherapy in 30 years. Focusing on three targets:

ERBB2 (HER2). Breast cancer has been looking at HER2 for some time. Relatively few breast cancer patients have this mutation. By contrast, the majority of BC patients have this mutation. It’s an area that has the potential for a large benefit. Afatinib has been studied in for ERBB receptors in a phase II study. 5/6 of the patients with HER2 achieved PFS3 endpoint – they had genomic alterations, and lived longer as a result. (Choudhury et al, JHO 2016). Measuring HER2 amplification by IHC or FISH may not be determinative in response, but it is suggestive. 3+ patients response better, but 2+ patients results are mixed. So we’re seeing some promising results in HER2 therapy. Micropapillary might be especially promising. We’re trying to recruit additional patients (and institutions) for our study. The Afatunib drug needs close management since it has so many toxicities.

FGFR3. Has shown promise for advanced mets patients. 5 of 8 patients saw long-term reduction of tumor burden. Some patients have seen prolonged responses. The data is similar to immunotherapy. Janssen is bringing this drug forward for BC.

ERBB3 (HER3). We’ve also seen promising response in small studies relating to ERBB2.

Targeting angiogenesis, Arjun Balar, MD, New York University Langone Cancer Center. Sunitinib has been tested is several studies. Waterfall plots showed there is was modest response. We looked at combination studies with chemo an saw that there might be a higher response rate, but these were small phase I studies. Lilly has a positive result in the RANGE study using Cyramza.

Unanswered questions for immunotherapy: 5 drugs have been approved for second line therapy; two for first line for chemo ineligible therapy. But a minority of our patients respond. We need to do better.

Studies show that a higher VEGF level can inhibit tumor growth. Maybe we can combine VEGF blockages with immunotherapy. A phase I study combined atezo and bevacizumab was well-tolerated, had evidence of synergy, and had good responses in 4/10 patients. Beva appears to be working in the small molecular compartment. We’re preparing a Phase II of atezo+beva vs. atezo alone. Other studies have been done (e.g., Apolo et al, using cabo, ipi, nivo), and axtinib+pembro showing up to a 70% durable ORR; a phase 3 is pending.

Targeting tumor metabolism, Ubaldo Martinez-Outschoorn, MD, Thomas Jefferson University. The Warburg effect shows that the main metabolites for cancer is pyruvate. It’s an inefficient process. Why is cancer using such an inefficient process to generate ATP? There is altered tumor vascularization and relative failure of antiangiogenic therapy. Think of tumors like coral reefs – both can thrive in poor environmental conditions.

Notes from BCAN Think Tank Day 2

2017 BCAN Think Tank Day 2

Engaging Patients in Research, presented by Angie Smith, Assistant Professor, UNC Chapel Hill.

“Patient engagement is the blockbuster drug of the century.” Three objectives: Patient centered outcomes and its interaction with patient engagement; types of patient research; and future plans.

Patients want to know the benefits and harms of research; how it’s going to affect their lives; stakeholder perspective.

Patient engagement is necessary in a meaningful way throughout the research. They are not lab mice.

Prep phase: select questions that have meaning to the patients. The execution phase (randomized or not) can affect recruitment, data collection, and analysis of results.

Translational: disseminating the results – can benefit by using the patients to publicize the results and better ensure that that the study is used.

Groups like this – including patient advocates – help guide the proper research questions. BCAN’s patient survey network helped prioritize the studies. Step 1: recruit patients and caregivers to join the patient survey network. There are more than 26,000 in in BCAN Inspire community. Step 2: Generate and prioritize the research questions from the surveys, then narrow them down to 3-5 per disease stage. Researchers should listen to patient stories and turn them into questions. Step 3: Survey sent to BCAN to validate our process. We did that in two different years and got three times the participation on the second time. Step 4: Disseminate the research questions to universities, BCAN, funding agencies.

Prorities: PCORI 2017 put NMIBC on the chart for priorities for the first time. PCORI disseminates $1.6 billion in funding.

Future: continues PSN growth; bi-annual research prioritization; patient empowerment through education. PEER: Patient Empowerment through Engagement Research has been funded for several years, getting patients on research teams.

As health care providers, we need to hear about what research questions are important to the patients, and have that guide our efforts.

Save the date: BCAN Leadership Summit: Washington DC, Oct. 13-14.

Renate Louwers, BCAN Patient Advocate

Renate lost her husband to bladder cancer in 2014. She’s a voice for metastatic bladder cancer patients and caregivers. Patient forums such as ispire.com provide a lifeline to patients. They are willing to provide the “soft skills” that are so helpful. Researchers should consider reaching out to those communities.

Implementing Patient Reported Outcomes (PROs) into Clinical Practice, by Dr. Ben Brooke, a vascular surgeon at University of Utah. Sometimes the medical team is happy and the patient feels poorly. The model for measuring quality of healthcare – Access, Structure, Purposes of Care to clinical outcomes and patient experience. The patient experience is being factored into Medicare reimbursements. It’s important to know. PROs are and report of a patient’s health states that comes directly from a patient without interpretations of the patient’s response by a clinical or anyone else.

So how do clinicians make PRO outcomes more useful to us? PROMIS: Online repository of validated instruments to measure assessment of patient status. Lots of different measures. Why use it? It provides standardized measurements across different domains and diseases. IT’s “cross-walked” to other measurement. They are reliable and valid. They are inclusive, and flexible and efficient. CAT (computerized adapted testing) changes the subsequent questions based upon the prior responses. That helps make it more user-friendly.  

Health Information Technology (HIT) lets patients provide information on their own computers or phones. Some institutions hand each patient an iPad with their data on it, and also surveys, and additional information. The measures are real-time loaded into a patient’s EHR (Epic) and can be reviewed by the clinician. It can be customized based upon PROMIS factors to meet the patient’s needs. It takes less than 4 minutes average to complete the entire analysis.

Data shows that mets cancer patients who receive automated PRO assessment had a better outcome, including greater long-term survival. (JAMA 2017). PRO for bladder cancer exist and could be implemented by your practices. The BCI – bladder cancer index – can provide better tracking of patient outcomes.

Patient-Reported Outcomes: Sharing Data Across Healthcare Systems, by Danielle Lavallee, U Washington. PROs are increasingly common, but there are issues in translating it across different healthcare systems. Insurance companies are requiring this. It’s complex. Knowing what to measure and how to measure is important – before the medical intervention and up to 2 years after the intervention.

Too often, electronic health records don’t link up to each other. There are tools available to now do that, and make the data available in real time. Clinicians can use dashboards that pare down how their patients are doing. It also helps aggregate data and see how institutions are doing. The ability to compare outcomes needs to take into account the patient data and improve the care. “Systemness” for PROs is the goal – to use the data to help improve every aspect of the system. There are diverse needs to measure for patient, provider, system, and reimbursement. Each of the metrics exist, but there are slight differences. Knowing how to capture and apply this data is critical. Example: level of alcohol abuse may not be documented in charts, but relevant to a surgeon.

Multiple stakeholder themes: workflow; IT systems; reduce the burden (keep it under 5 minutes), etc. There are lots of challenges: policy vs. practice; research vs. routine care; how to capture the data and how it changes the workflow; Electronic Health Records (EHR’s) are not patient centered or integrated across organizations.

Opportunities: It’s still early. The environment is changing quickly. Dynamic environment. Unified stakeholder needs. Collaboration to support success: clinics, social workers, etc. The value of PROs for health care increases as we increase the ability to compare outcomes.

Breakout groups

I attended the Survivors Working Group. We zeroed in on three topics to work on over the next year:

1.      Update and enhance information in BCAN Support and Discussion Groups. 

2.     Improving patient access to understanding clinical trial options. BCAN’s clinical trial dashboard can be improved by helping sift through the options.

3.     Travel guides for traveling with ostomy pouches, preparing a summary of information from reputable sources. TSA information is available here and here. 

SWG members will self-select and join the working groups that are of interest, pick your leaders, set your agenda.

In the afternoon, Bob, Marge, Nancy, Jennifer and I ducked out of the main session and conferred about revamping the BCAN Volunteer and Resource Guide, and internal guide provided to patients and caregivers who agree to take phone calls from people who call into BCAN seeking guidance.

Notes from BCAN Think Tank Day 1

I’m attending the 2017 BCAN Think Tank in Charlotte. Following are my notes from Day 1

In the morning, I attended the patient advocacy meeting, a gathering of more than 30 bladder cancer survivors who have become active in advocating on behalf of bladder cancer survivors. The common thread – seeking help and support from bladder cancer – quickly bound us together. There were a number of people in attendance who are frequent commenters on BCAN’s Inspire site, including Cliffsider, MargePA, Karego.

Survivor’s working group meeting

In the afternoon workshop, we brainstormed to identify projects that the members of the working group could undertake and accomplish in the next year. Ideas discussed include:

Travel info: Providing information to help people traveling with ostomy bags or saline

Elevating BCAN’s visibility: BCAN is #63 on google search for “bladder cancer”. [This probably is because BCAN blocks Google’s search engine crawlers (robot.txt). Andrea and Stephanie have been made advised and will correct it.] Search for “bladder cancer support group”: BCAN is first result.

Better support group: How to start a support group on BCAN web site.

Getting BCAN info into urologist’s offices. Discussion of reasons for resistance.

Training urologists during residency and fellowships to know about BCAN and support groups

Insurance – giving patients info about insurance coverage: “triage cancer” training.

Clinical trials: providing better information on finding relevant clinical trials.

Keystone session

All the attendees introduced themselves. (I said I was “a poster child for immunotherapy. Metastatic for more than 5 years, no evidence of disease for more than two years.” That got some applause.)

Speaker: Dr. Timothy Gilligan, Director of Coaching, Center for Excellence in Healthcare Communication, Cleveland Clinic, “Using Relationship-Centered Communication to Transform Healthcare, Our Organization, and Ourselves”.

Dr. Gilligan’s early slide: “Warning: people are closer than they appear”. Too often we stay in safe spaces. But relationship-centered communication focuses on the relationship. It considers the impact of the behavior on the relationship. What is more important? The relationship, or who is right and wrong, who wins, to scratch the itch, to vent. 

Having a white coat and an MD doesn’t mean that patients should automatically trust you. We need to cultivate a deep and sincere curiosity about others. Physicians are “explainaholics.” If you explain things to your attending, you will be rated well. But doctors should think about listening more.

Doctors pay attention to things that are wrong, out of the ordinary. If a liver looks normal, a doctor will ignore it. But if it has lesions, it merits attention. Pay attention t the whole person, not just the issues.

Doctors talk too much. “Listen skillfully in a way that encourages others to talk and optimizes your chances of accurately understanding.”

“Respond empathetically to others’ experience. Embrace your own vulnerability.” Learn from your mistakes, and acknowledge them.

Find out who the patient is now, where they were before cancer, and how their life has changed with the disease.

Why work on communication? We aren’t good enough at challenging conversations. Giving bad news. Engaging with and resolving conflict. Helping people change problematic or unhealthy behaviors.

Communication is about stronger, more authentic relationships. Understanding and acquiring specific skills.

End-of-life communications. Doctor gave her false hopes. Each test that came back worse deeply harmed patient’s resilience. Why was everyone saying it would be ok and it wasn’t?

Patient wrote about how cancer helped him focus his life while his days were prolonged. Helped him be a better person.

Informed consent. NY Times article on how informed consent was a sham. Letter from PhD about how he was bullied by his doctors. Doctors think that patients forget more than half of what they tell them, and less than half of what they remember is inaccurate. They don’t know who is in charge of their care.

Patients want to know that their doctor cares about them. They forget their humanity. In an ER, the doctor doesn’t show empathy, it’s “what is your pain on 1-10”. Remember your empathy.

A hospital or clinic is a foreign environment to patients, but it’s the home of doctors. Put your patients at ease. Connect, listen without controlling the conversation. Learn how to recognize, identify and respond to emotions. Respond constructively to difference, disagreement and conflict. Communicate in such a way that the listener understands and remembers.

Book, “Communication the Cleveland Clinic Way.” REDE: Relationship, Establishment, Development, Engagement. Crying is a normal patient response to bad news. Empathy. We practiced with case studies. We told the facilitators not to teach, but to facilitate a good leaning environment from each other.

Boissy A, et al (2016) JGIM: Findings included better communication, empathy increased, no decrease in quality.

Healthcare is filled with difficult conversations.

David Bowie quote of what he tried to do in light of his terminal disease: His life was spent writing songs about loneliness, isolation, relationships, connections. “That’s about it.”

Key practices for a relationship-centered organization: Put relationships first. Culture change. Parallel process (walk the talk). Curiosity. Listening (instead of talking). Paying attention to power and hierarchy (being at the bottom of the hierarchy is bad for health; from the top, everything looks fine).

Let the patient set the agenda. Do shared decision-making. The doctor has special expertise; the patient has expertise in living in the body.

Transparency. How often is it something is there but not discussed. Cancer mortality, for example.

Empathy. Cartoon: “Sorry your head hurts, sweetie. What can I do to help you shut up about it.”

4 Powerful Question for Teams:

1.     How does the way I do my work help you do yours?

2.     How could I help you in doing your job

3.     Where are our efforts aligned?

4.     How can be do better in working together?

What realm are you in? Emotional vs. Cognitive. So often in medicine, he hid emotional issues in cognitive analysis. How long have I got to live is an emotional question, motivated by fear. New Yorker cartoon of death at the apartment door: “Don’t freak out. It’s just a save the date.”

What is the current climate in medicine? It’s a difficult environment. More and more are burning out. Mayo Clinic article burnout of doctors 2011-2014. Burnout is increasing, job satisfaction is going down.

CREW: Civility, Respect, Engagement in the Workforce. VA study. CREW helps engagement, outcomes, happiness. Open ended assessment: I feel appreciated when … Implementing CREW significantly improves workplace satisfaction.

How we communicate in relational coordination makes a difference. Frequent, timely, accurate, problem solving, with shared goals, mutual respect These factors help improve quality of care, shorten length of stay, and postop pain.

If we took greater responsibility for how we treat each other, and respect each other.

Key points; Communication matters. Communication skills can improve with structured practice and skilled feedback.

It must be woven into and supported by organizational culture.

“When you try to control, you lose the opportunity to influence.”

Q&A:

Q. How to implement this with EMR systems, when docs need to document everything?

A. It’s hard. Times are tight. Scribes. More organizations are pulling docs out and training them because it works. Story of happy clinician who persuaded his hospital to pay him part time, and he would spread his patients over a full-time schedule.

Q. 90-95% of your slides can also apply to interpersonal relationships. The majority of our student’s parents are divorced. How do you expect kids who grew up in homes with communication problems to learn different skills.

A. I don’t think that kids with divorced parents are not worse off in communications. Most of us need help. Role models. Is giving bad news to patients like breaking up with a partner: it’s not you, it’s me, blah blah. Learn to own bad news.

Q. How do we have shared decision making with a bladder cancer patient when they are drinking from the firehose?

A. It is hard, especially with the compressed times that doctors have. We can delegate, provide written documentation, and apply the communication skills. Knowing how to graphically display data helps. Visual tools are much better at communicating info to patients than a verbal download. Often times that does not work.

Q. What are your thoughts on sharing personal info with patients? We’re taught in med school to not do it. Can it help?

A. Patients tell researchers that we give too much information. But a lot of my patients want to know about my kids. I’ll share that. But be very careful.

Q. I’ve giving similar courses to my residents. I’m struck with the cognitive vs. emotional. Moving into the emotional is messy and complicated. Most have learned by doing. How much autonomy do you give to your residents to do that?

A. It’s hard for faculty to go into a room and watch and a resident or fellow, and not say anything. I did that for a month – saying nothing – and my ratings on communication scores plunged. So I changed and talked more. When practicing tennis doubles at the net, I had the ball machine fire balls at me and I learned not to duck. We’d practice those questions: Am I going to die? How long do I have left? Practice the responses. Surgeons don’t panic at the sight of blood because they have practiced.

Q. From a patient’s perspective, what is the best way to get a doctor to slow down and get the information from the doctor that I need?

A. We’re moving to a perspective of having a patient as a member of the health care team. Coming with a clear sense of what you want – your questions – helps set the agenda. Ask the patient. Knowing that a patient may have about an 8 oz. capacity, it makes no sense to pour a gallon into the cup. It’s useless, messy, a waste of time, and frustrating. 

***

At the dinner, BCAN co-founder Diane Quale was honored for her tireless work in building and sustaining the organization. 

CR 755: I've been deported

After 5½ years of being a part of my life, this afternoon my PowerPort was removed from my chest. It had been used my GemCis chemotherapy in 2012, my radical cystectomy surgery, my DD MVAC chemo is 2013, all 46 of my immunotherapy infusions in 2015-16, and dozens of CT scans. It has saved my veins from damage, has eliminated my arm bruising, done what it was intended to do, and served me well.

My PowerPort minutes after it was pulled like an alien from my living tissue

So why remove it? Three reasons. First, it’s not being used, and is unlikely to be needed in the foreseeable future. All of my recent CT scans at Kaiser have used my arms for the IV contrast. And if I need further immunotherapy, my arms are fine. Second, keeping the port in without ongoing use increases my risk of blood clots. Third, and most importantly, when I read books with my grandchildren on my lap, they have a tendency to bonk the back of their head into my port, which doesn’t feel good. And since Jennifer and I are going out to Utah next month to babysit the grandkids while Chelsea and Josh take a much-needed vacation, I wanted to be ready.

The procedure took 5 minutes. A local anesthetic, a little slice and tug, and it was out. A few stitches and I’m now I have no duties (get it? free port . . .) Good thing I have my passport.

In other news, Jennifer and I will be attending the BCAN ThinkTank in Charlotte NC from August 3-5. Stay tuned for the latest developments in all things BC related. But before that, Jennifer and I will be going up to New England to visit Spencer one last time on his thru-hike of the Appalachian Trail. He’s currently in Vermont, and hopes to be in the White Mountains by the end of next week. If you haven’t given a few bucks to the fundraising purpose behind the hike -- to support the Chris Atwood Foundation -- please consider doing so.Thanks!

CR 743: Another clear CT scan

Twelve weeks have passed since my last scan, so this week I had another scan at Kaiser. Today I drove up to Hopkins to check in with Dr. Hahn. On the way up, the kaiser nurse called to say that there were no changes from the last scan. Dr. Hahn confirmed that there wes no evidence of metastatic activity. Yay!

I questioned Dr. Hahn about the latest durability data for checkpoint inhibitors from the June ASCO meeting. He said that data was still being collected (and would be for years), but to date the interim data suggested that, of the patients who have had a response to PD-L1 drugs, so far only about 15% had relapsed. He stressed how a lot of these patients were still on trial and getting their drugs, and that there was a much smaller population of patients who were most similar to me, who had completed (or substantially completed) their trial, were off drug, and had a durable complete response. Nevertheless, the preliminary data suggests that so far there has not been a large number of patients who have had immunotherapy-induced remissions, then had their cancer come back.

I also asked whether I should have my PowerPort removed. It's been sitting in the top of my chest for more than 5 years. I noticed during my recent trip to Utah that when my grandchildren sat in my lap while I read to them, they would sometimes bonk their head against it, sending a jolt of pain. Dr. Hahn said that he saw no reason to keep it in, as there was no immediate need to use it. Keeping it in also had a slightly increased risk of blot clots. So maybe I'll have to call ICE and get deported. (Gotta love cancer humor.)

While in Utah last month, I had dinner with a friend of a friend who recently had been diagnosed with muscle invasive bladder cancer. As I shared bits of my cancer journey and some of the lessons that I had learned, I was reminded of how much of a long haul it's been. Bladder cancer usually is a chronic disease, one that has a high frequency of relapse and can require a lifetime of monitoring. I was struck how all of the issues I've been dealing with have been the side effects from the treatments to try to stop the cancer. My discussion was focused on the consequences of trying to treat my cancer. I've felt virtually nothing from the cancer itself. I understand that the disease is worse than the cure, and that with no therapy I'd almost certainly be dead, but my life has been irrevocably altered by the therapies I've received. I long for the day when medical knowledge advances to the point where doctors can cure mets bladder cancer (or any of the 100+ other types of cancer) with a therapy that has minimal or no side effects.

Some notes on my kids: Last week, my oldest, Chelsea, graduated from her medical residency program, and will be working as a hospitalist in Ogden Utah. Last month she and her husband  bought an old farm house with a barn and out buildings on 5 acres in Huntsville. They already have a dozen rabbits, 3 pigs and a cow, and more animals are on their way. Spencer is still on the Appalachian Trail, is about to enter Vermont, and is hoping to finish at Mt. Katahdin by mid-August. Kirsten just moved to Denver and will next week start a 10 month program to get her MSW. And today is Garrett's hump day - he is halfway through his mission for the LDS Church. I'm so grateful that I can have joy and rejoicing in my posterity.

Four new drugs approved for metastatic bladder cancer!

In the past month, the FDA has approved four new immunotherapy drugs for treatment of locally advanced or metastatic bladder cancer. On April 17, FDA granted accelerated approval to Genentech/Roche’s Tecentriq (atezolizumab). On May 1, AstraZeneca’s MedImmune division earned FDA’s approval to Imfinzi (durvalumab). On May 9, FDA approved Bavencio (avelumab), a drug from EMD Serono, a partnership of Merck and Pfizer. And on May 19, FDA approved another Merck drug named Keytruda (pembrolizumab). All 4 drugs are approved for bladder cancer patients who either have failed chemotherapy (second line therapy), or first line therapy for patients who are chemo ineligible, usually due to kidney problems or other co-morbidities.

This is great news. One of the press releases quoted on of my doctors, Andrea Apolo of the NCI, as saying that "until recently, there had been limited innovation in urothelial carcinoma, and this approval gives us another treatment to help battle this aggressive disease." She added: "Once urothelial carcinoma progresses after treatment with chemotherapy, the five-year survival rate is alarmingly low."

At last Friday's Hopkins presentation regarding bladder cancer, the panelists were encouraged by these recent approvals. They noted how studies are ongoing to determine if immunotherapy is more effective than chemotherapy, which would make these drugs a first line therapy for everyone with metastatic bladder cancer. Other trials are evaluating whether immunotherapy might be able to reduce the number of radical cystectomies. Although those results are several years away, the breakthrough of these new therapies is very hopeful.

Other targeted therapies are also being studied. This week a new article was published evaluating a drug that regains control of cell cycle deregulation, which is a key driver of bladder cancer disease progression. The article provides an overview of the current status of those CDK4/6 inhibitors in cancer therapy, their potential use in muscle-invasive bladder cancer, and the challenges for their clinical use.

Big pharma has invested billions of dollars in developing these new drugs, and they are saving lives. Keep it up, people!