Today I gave testimony at a committee hearing at the Food and Drug Administration. The forum was the FDA's joint Cellular, Tissue, and Gene Therapies Advisory Committee (CTGTAC) and Oncologic Drugs Advisory Committee (ODAC) meeting. They were considering an application to approve a new drug named MCNA for non muscle invasive bladder cancer. Although I have not been treated with that particular drug, I was asked by BCAN's executive director, Monica Smith, to provide a brief statement of my journey with bladder cancer to illustrate the need for new drugs, and to remind the committee of the importance of their work. My statement followed Monica's statement, who spoke of the extent of bladder cancer and the fact that the FDA has not approved a significant new bladder cancer drug for nearly 30 years.
For what it's worth, following is the outline that I prepared for my statement:
Name
Although I'm a patent attorney, I'm here as a BC patient. No financial relationship or compensation by any person or entity.
Blogging re journey: search for Ken's Cancer Blog. About 350 entries, hundreds of thousand of views. No ads or compensation. BCAN volunteer.
Diagnosed in Nov 2011 at age 49
Uro: BCG candidate if NMIBC
1st TURBT inconclusive for staging
Intense review of literature and consultations to know options
Second TURBT: MIBC, primary tumor T2b, plus 10 other tumors T1 and CIS. High grade micropappillary
Baseline CT and PET negative for mets
Concluded bladder could not be saved
Consensus: neoadjuvant GemCis chemo
CT after 3 rounds showed mets in multiple nodes
Discontinued chemo, rushed into surgery (RC with neo, prostectomy, 61 nodes)
Surgical pathology trifecta: upgrade to T3, andenocarcinoma in prostate, and 12 positive nodes
NCI SEER data show that 85% of mets BC die within 5 years.
No established second line therapy
Enrolled in clinical trial sponsored by Dendreon but randomized into control group: watchful waiting. Ongoing neobladder issues (strictures, nocturnal incontinence, sleep deprivation).
15 months later, distant mets found in supraclavicular node, confirmed by biopsy
Debate among treatment team re next therapy: 3 supported more chemo, 2 opposed
Commenced ddMVAC in Sept 2013. Discontinued after 3 rounds. Peripheral neuropathy. Mets stable for 9 more months.
Distant mets resumed growth in fall 2014. While being evaluated for a clinical trial at NIH, CT scan found extensive PE. Treated with LMWH.
By Jan of 2015, tumors were extensive, growing at >1 cm/month
Evaluated multiple immunotherapy trials, first mets BC patient in nivolumab trial at JHUH
Nivolumab (Opdivo) is an anti-PD1 drug being developed by BMS
After 6 rounds, CR, target tumors NED.
As of 11/5, Largest non-target tumor is 7 mm on long axis.
20th infusion tomorrow. Protocol calls for up to 2 years of drug.
Durability unknown.
I get lots of Q's through my blog and BCANs web site: crying need for new therapies
Not a doc. No medical advice. Encourage patients to be proactive, seek 2d opinions, look at clinical trials.
Grateful to my health care team, researchers, pharma, NIH, and members of this committee.
No position on MCNA. Many patients and their families rely and depend upon your work to evaluate and decide whether to approve new therapies. The need is great.
Thank you.
Wednesday, November 18, 2015
Monday, November 9, 2015
CR Day 139: Two videos explaining immunotherapy
From time to time I've been asked to explain how Opdivo (nivolumab) works. I usually mumble something about how the drug uses the body's immune system to attack cancers cells by using an anti-PD-L1 mechanism to defeat the cancer cell's defenses. Most people politely nod and have no idea what I'm talking about. Neither do I. But here are a couple of short videos that explain what's going on in lay terms. First, a whiteboard sketch from Dana Farber Cancer Institute. Second, a film from Cambridge University showing killer T cells attacking cancer. There are about 5 million T cells in each teaspoon of blood, and Opdivo gives them the ability to detect and kill cancer cells that previously were ignored because they didn't look like cancer cells. It's amazing to think about everything that is going on inside the human body. I'm glad that my clinical trial has been working n my cancer.
On Saturday, I attended a forum regarding recent advances in immunotherapy, and heard from doctors regarding the latest advancements in fighting cancer. I hope to post a more detailed summary, but their enthusiasm of how we are entering a new stage in defeating cancer was infectious. I am more hopeful now of my long-term prognosis than I ever have been since I was diagnosed with metastatic cancer. I am grateful to the ongoing research efforts and am glad that, by participating in a clinical trial, I might be helping others in the future.
On Saturday, I attended a forum regarding recent advances in immunotherapy, and heard from doctors regarding the latest advancements in fighting cancer. I hope to post a more detailed summary, but their enthusiasm of how we are entering a new stage in defeating cancer was infectious. I am more hopeful now of my long-term prognosis than I ever have been since I was diagnosed with metastatic cancer. I am grateful to the ongoing research efforts and am glad that, by participating in a clinical trial, I might be helping others in the future.
Thursday, November 5, 2015
CR Day 135: 18th infusion, clear CT
Today was another long day at Hopkins. Two hours each way in rush hour traffic. My port was easily accessed and gave a strong return of blood for my lab work -- whatever problems I had earlier in the year with a sheath growing over the tip have been resolved. I went upstairs for the CT scan and was told that someone had forgotten to obtain insurance company preapproval for today's scan. I could either wait for hours while Hopkins tried to get the approval; skip the scan; or sign a waiver that I would pay in case Hopkins could not get approval. I chose door 3, signed the form, and had the scan.
Insurance company approval is needed because, although I am in a clinical trial sponsored by Bristol-Myers Squibb, Hopkins still seeks insurance company payment for costs that are customary for ongoing monitoring of a metastatic patient. That apparently includes CT scans every 6 weeks, and the accompanying lab work and doctor's visits. Bristol-Myers apparently pays for the nivolumab drug and the associated costs to infuse it, as well as various supporting costs such as a portion of the salaries of the clinical trial nurse and other health care professionals. Running those trials is not cheap, and I am glad that I'm not having to pay for the drug. According to a recent Wall Street Journal article, the retail cost of Opdivo to treat metastatic melanoma is over $12,000 per month.
After the scan, I had to wait a couple of hours for the results to be read and my drug to be released from the pharmacy. I read the newspaper in the Hopkins cafeteria while I drank a couple of liters of Diet Coke to flush the radioactive contrast out of my kidneys. Eventually, I met with Dr. Park, one of Dr. Hahn's fellows, and put him through the paces while getting his views on the durability of nivolumab. He was not as up to date on the literature as I was, and took some time to do some searches and skim the latest articles before telling me that there was no data on point, and the best he could do was extrapolate from the same articles that I discussed in my post of two weeks ago. We also discussed how long I should continue with the trial, saying that I was of the view that I should ride this horse as long as it would carry me. He was inclined to agree, but said that we should discuss it with Dr. Hahn, who fortuitously entered soon thereafter. Dr. Hahn saw no reason to stop treatment, and said that, as long as there was no progression of disease, the only thing that I should keep in mind was the chance of toxicity, although the risks of that are relatively low, and this review suggests.
I noted how I had noticed an increase in leaking from my neobladder at night, or any time I was in a horozontal position, for that matter. We discussed whether I should increase my dosage of imipramine, or try something else. Dr. Hahn said he wanted to discuss that with some of his colleagues, and I said that I would make a more conscious effort to track the frequency and circumstances of when my neobladder leaked.
Dr. Hahn said that the results of my CT scan of my neck, chest, abdomen and pelvis showed no change from my last scan in August: no evidence of disease, no inflamed nodes, no suspicious tumors. The pulmonary inflammation from my post-Africa infection had dissipated, and everything looked clear. Yay! I went up to the infusion center and had 377 ml of Opdivo pumped into my body, along with a liter of saline. When I reclined back, I started to leak. I smiled as I hurried to the bathroom, pulling along my infusion machine: I'd much rather deal with peeing my pants than dying of cancer.
Insurance company approval is needed because, although I am in a clinical trial sponsored by Bristol-Myers Squibb, Hopkins still seeks insurance company payment for costs that are customary for ongoing monitoring of a metastatic patient. That apparently includes CT scans every 6 weeks, and the accompanying lab work and doctor's visits. Bristol-Myers apparently pays for the nivolumab drug and the associated costs to infuse it, as well as various supporting costs such as a portion of the salaries of the clinical trial nurse and other health care professionals. Running those trials is not cheap, and I am glad that I'm not having to pay for the drug. According to a recent Wall Street Journal article, the retail cost of Opdivo to treat metastatic melanoma is over $12,000 per month.
After the scan, I had to wait a couple of hours for the results to be read and my drug to be released from the pharmacy. I read the newspaper in the Hopkins cafeteria while I drank a couple of liters of Diet Coke to flush the radioactive contrast out of my kidneys. Eventually, I met with Dr. Park, one of Dr. Hahn's fellows, and put him through the paces while getting his views on the durability of nivolumab. He was not as up to date on the literature as I was, and took some time to do some searches and skim the latest articles before telling me that there was no data on point, and the best he could do was extrapolate from the same articles that I discussed in my post of two weeks ago. We also discussed how long I should continue with the trial, saying that I was of the view that I should ride this horse as long as it would carry me. He was inclined to agree, but said that we should discuss it with Dr. Hahn, who fortuitously entered soon thereafter. Dr. Hahn saw no reason to stop treatment, and said that, as long as there was no progression of disease, the only thing that I should keep in mind was the chance of toxicity, although the risks of that are relatively low, and this review suggests.
I noted how I had noticed an increase in leaking from my neobladder at night, or any time I was in a horozontal position, for that matter. We discussed whether I should increase my dosage of imipramine, or try something else. Dr. Hahn said he wanted to discuss that with some of his colleagues, and I said that I would make a more conscious effort to track the frequency and circumstances of when my neobladder leaked.
Dr. Hahn said that the results of my CT scan of my neck, chest, abdomen and pelvis showed no change from my last scan in August: no evidence of disease, no inflamed nodes, no suspicious tumors. The pulmonary inflammation from my post-Africa infection had dissipated, and everything looked clear. Yay! I went up to the infusion center and had 377 ml of Opdivo pumped into my body, along with a liter of saline. When I reclined back, I started to leak. I smiled as I hurried to the bathroom, pulling along my infusion machine: I'd much rather deal with peeing my pants than dying of cancer.
Thursday, October 22, 2015
CR Day 121: Infusion 17; research on nivolumab durability
Last night I stayed up until 1 am so I could finish reading Neal Stephenson's Seveneves, a cracking good yarn about efforts to preserve humanity following the destruction of Earth. Less than 5 hours later I got up after having wet my bed due to my malfunctioning neobladder. The 50 mg of imipramine that I take each night has helped to decrease the frequency of spontaneous nocturnal voiding, but it still happens enough for me to celebrate each night that I get an uninterrupted sleep. I keep a large waterproof mattress pad underneath my sheet to protect the mattress from stains and smells. After being jolted awake this morning, I quietly left the bedroom so as to not disturb Jennifer. I sat in the hot tub for an hour and saw several shooting stars, reminding me of the meteoric "hard rain" in Stephenson's book. I got out of the hot tub as dawn was breaking and left the top down to cool off as I started my drive to Baltimore.
While waiting for my appointment with Dr. Hahn, I researched the latest data regarding durability of nivolumab. Bristol-Myers has not yet published any data from my trial, or any other Opdivo trial specific to metastatic bladder cancer or other types of metastatic urothelial carcinoma (searches can be run here). Recently published results regarding nivolumab on other types of cancer have been equivocal. For example, an October 20, 2015 Up To Date review of recent advancements in oncology reported the nivolumab had shown promising results in metastatic melanoma and hepatocellular cancer. A September 25, 2015 item in the ASCO Post found that around 20% of heavily pretreated patients with non-small cell lung cancer (NSCLC) had an overall response to nivolumab, and the median duration of response to be about 17 months. Another September 2015 report of a different NSCLC study of nivolumab and ipilumab showed overall responses of between 13 and 39%, with zero complete responses and median progression-free survival of 5-10 months - results the authors called "deep: and "durable." An August 6, 2015 article in Oncology Targets Therapies reviewed the literature regarding nivolumab and metastatic melanoma and concluded that nivolumab was better than conventional chemotherapy, with longer overall response rates and longer durability. At BCAN's August 2015 Annual Think Tank on Bladder Cancer, Dr. Efstathiou summarized the current status of immunotherapy and bladder cancer, including recent nivolumab data.
Armed with this unsatisfactory data set, I asked Dr. Hahn for his views on the likely durability of my complete response to nivolumab. He readily conceded that there was no data directly on point. All we could do for now is to look to how nivolumab was working on other cancers (which is what I had been researching), as well as looking at data from other PD-1 drugs on mets bladder cancer (such as MPDL3280A). But none of that data sheds much light on how long I might have before my metastatic cancer returned. Dr. Hahn said that researchers generally assume that no drug that they are researching will "cure" cancer; instead, in multiple mutation cancers like mine, once the PD-1 avenue was blocked, the cancer likely would start growing using another mutation. But he hastened to add that there was no way to know if, or when, that might happen to me. He sympathized how I was adrift in a sea of uncertainty regarding the durability of my CR, and said that my experience would help inform others who come later. Time will tell.
We then reviewed some amendments to the clinical trial protocol. The most relevant one to me was a new option of voluntarily discontinuing treatment following a complete response, with the right to resume treatment if the cancer returned. If I was to discontinue my every-other-week pattern of infusions, I still would be closely monitored through checkups and CT scans every 6-8 weeks to see whether I had any latent side effects or whether the cancer was growing again. I was given a copy of the new protocol, and we agreed to talk about that option in on November 5 when I will have my next CT scan and infusion. I continued to mull over the yet-unanswered question of nivolumab durability while I received my infusion.
My literature review and questions to Dr. Hahn were prompted by discussions Jennifer and I have been having about the future. I'm slowly starting to lift my eyes to the possibility that I might live longer than the statistics suggested when I was first diagnosed with mets BC (e.g., 90-95% chance of dying by May 2017). But without any data on how others have fared using this therapy, I have no basis to form expectations for how long I may live. I certainly can't assume that I will fit into the conventional mortality tables for a 53 year old white male. According to the Wharton School's longevity calculator, which does not factor in cancer, I'm likely to live well into my 80's, and have only a 5% chance of dying before I'm 60. In fact, those statistics have been inverted for me for the past three and half years: a 5-10% chance that I'd see age 55, let alone age 60. It's now looking more likely that I'll make it to 55. Beyond then: who knows?
Not having an objective basis for my life expectancy continues to leave me wondering how I should make all sorts of decisions. Do I invest for short term protection or long term gains? Do I consider going back to work? Do we sell our lake house after it is rebuilt from the flood caused by a broken pipe? Next year, our nest may be empty. Do we downsize? Do Jennifer and I explore the idea of full-time missionary service for our church? Jennifer and I have kicked around these questions, and have not found an acceptable way to work towards the answers. One approach is, since we don't know what weight to give it, we pretend cancer is not a factor and talk about what we would do. That's led to some interesting discussions, but no resolutions. Time will tell.
While waiting for my appointment with Dr. Hahn, I researched the latest data regarding durability of nivolumab. Bristol-Myers has not yet published any data from my trial, or any other Opdivo trial specific to metastatic bladder cancer or other types of metastatic urothelial carcinoma (searches can be run here). Recently published results regarding nivolumab on other types of cancer have been equivocal. For example, an October 20, 2015 Up To Date review of recent advancements in oncology reported the nivolumab had shown promising results in metastatic melanoma and hepatocellular cancer. A September 25, 2015 item in the ASCO Post found that around 20% of heavily pretreated patients with non-small cell lung cancer (NSCLC) had an overall response to nivolumab, and the median duration of response to be about 17 months. Another September 2015 report of a different NSCLC study of nivolumab and ipilumab showed overall responses of between 13 and 39%, with zero complete responses and median progression-free survival of 5-10 months - results the authors called "deep: and "durable." An August 6, 2015 article in Oncology Targets Therapies reviewed the literature regarding nivolumab and metastatic melanoma and concluded that nivolumab was better than conventional chemotherapy, with longer overall response rates and longer durability. At BCAN's August 2015 Annual Think Tank on Bladder Cancer, Dr. Efstathiou summarized the current status of immunotherapy and bladder cancer, including recent nivolumab data.
Armed with this unsatisfactory data set, I asked Dr. Hahn for his views on the likely durability of my complete response to nivolumab. He readily conceded that there was no data directly on point. All we could do for now is to look to how nivolumab was working on other cancers (which is what I had been researching), as well as looking at data from other PD-1 drugs on mets bladder cancer (such as MPDL3280A). But none of that data sheds much light on how long I might have before my metastatic cancer returned. Dr. Hahn said that researchers generally assume that no drug that they are researching will "cure" cancer; instead, in multiple mutation cancers like mine, once the PD-1 avenue was blocked, the cancer likely would start growing using another mutation. But he hastened to add that there was no way to know if, or when, that might happen to me. He sympathized how I was adrift in a sea of uncertainty regarding the durability of my CR, and said that my experience would help inform others who come later. Time will tell.
We then reviewed some amendments to the clinical trial protocol. The most relevant one to me was a new option of voluntarily discontinuing treatment following a complete response, with the right to resume treatment if the cancer returned. If I was to discontinue my every-other-week pattern of infusions, I still would be closely monitored through checkups and CT scans every 6-8 weeks to see whether I had any latent side effects or whether the cancer was growing again. I was given a copy of the new protocol, and we agreed to talk about that option in on November 5 when I will have my next CT scan and infusion. I continued to mull over the yet-unanswered question of nivolumab durability while I received my infusion.
My literature review and questions to Dr. Hahn were prompted by discussions Jennifer and I have been having about the future. I'm slowly starting to lift my eyes to the possibility that I might live longer than the statistics suggested when I was first diagnosed with mets BC (e.g., 90-95% chance of dying by May 2017). But without any data on how others have fared using this therapy, I have no basis to form expectations for how long I may live. I certainly can't assume that I will fit into the conventional mortality tables for a 53 year old white male. According to the Wharton School's longevity calculator, which does not factor in cancer, I'm likely to live well into my 80's, and have only a 5% chance of dying before I'm 60. In fact, those statistics have been inverted for me for the past three and half years: a 5-10% chance that I'd see age 55, let alone age 60. It's now looking more likely that I'll make it to 55. Beyond then: who knows?
Not having an objective basis for my life expectancy continues to leave me wondering how I should make all sorts of decisions. Do I invest for short term protection or long term gains? Do I consider going back to work? Do we sell our lake house after it is rebuilt from the flood caused by a broken pipe? Next year, our nest may be empty. Do we downsize? Do Jennifer and I explore the idea of full-time missionary service for our church? Jennifer and I have kicked around these questions, and have not found an acceptable way to work towards the answers. One approach is, since we don't know what weight to give it, we pretend cancer is not a factor and talk about what we would do. That's led to some interesting discussions, but no resolutions. Time will tell.
median
progression-free survival time of 4.9 to 10.6 month - See more at:
http://www.cancernetwork.com/wclc-2015/first-line-nivolumab-ipilimumab-demonstrate-deep-durable-activity#sthash.sPfV7yHI.dpuf
median
progression-free survival time of 4.9 to 10.6 month - See more at:
http://www.cancernetwork.com/wclc-2015/first-line-nivolumab-ipilimumab-demonstrate-deep-durable-activity#sthash.sPfV7yHI.dpudepending upon the demonstrated deep and durable activity
Thursday, October 8, 2015
CR Day 107: 16th Opdivo infusion; goodbye Xarelto
As usual, the day before my scheduled infusion, I went to the local Labcorp office for a blood draw. Theoretically, having the draw the day before should ensure that my lab work is in place so the Hopkins pharmacy can custom-make my dosage of nivolumab, which otherwise takes at least three hours to compound. Yesterday, however, the Labcorp tech failed to draw enough blood to do the CBC work. This meant that Hopkins had to do my blood work and I got to wait.
Dr. Hahn and I discussed whether I could discontinue Xarelto. It's been exactly a year since my pulmonary embolisms were serendipitously discovered at NIH when I was being evaluated for a clinical trial. There has been no evidence of further PE's in my last eight CT scans. My body is not currently burdened by any metastatic cancer, thereby decreasing the risk for PE recurrence. Dr. Hahn was comfortable with my stopping Xarelto, saying that the risks of DVT or PE were much lower. Plus, I'll be having regular CT scans for at least the next two years through the clinical trial, so the risk of having an undetected recurrence is virtually nil.
Three hours later, my drug was released and I had my sixteenth infusion. I get my infusions sitting next to patients getting chemotherapy, and as I looked at the bald heads and gaunt frames, it seemed like a lifetime ago that I was one of those patients. In fact, it was only two years ago that I was suffering through ddMVAC. I hope that immunotherapy will replace chemotherapy, that the success rate will rise, the side effects will diminish, and more lives will be spared.
At least once a week, I review recent questions regarding bladder cancer at www.inspire.com and post responses. I focus on metastatic disease, where I have the most personal knowledge. I also have engaged in a number of one-on-one discussions with patients or their caregivers, and will on occasion point people to my prior blog entries where I have addressed the topic of their question. I also have been told by a number of patients that they have investigated and enrolled in immunotherapy clinical trials after reading of my good fortune. I'm grateful that others have been helped through my chronicles. When I started this blog, I had no idea what it would turn into. And I have no idea how long it will go.
Thirty six years ago, Dan Fogelberg released an album entitled Phoenix. The last song on the flip side of the record was titled, Along The Road. Recently I've thought about those lyrics in light of my journey with bladder cancer:
As for me, I can't say that my journey with bladder cancer started with joy, and certainly there has been fear along the way. But I have found many unexpected joys, and look forward to many more moments of rest and glimpses of laughter somewhere along the road.
Dr. Hahn and I discussed whether I could discontinue Xarelto. It's been exactly a year since my pulmonary embolisms were serendipitously discovered at NIH when I was being evaluated for a clinical trial. There has been no evidence of further PE's in my last eight CT scans. My body is not currently burdened by any metastatic cancer, thereby decreasing the risk for PE recurrence. Dr. Hahn was comfortable with my stopping Xarelto, saying that the risks of DVT or PE were much lower. Plus, I'll be having regular CT scans for at least the next two years through the clinical trial, so the risk of having an undetected recurrence is virtually nil.
Three hours later, my drug was released and I had my sixteenth infusion. I get my infusions sitting next to patients getting chemotherapy, and as I looked at the bald heads and gaunt frames, it seemed like a lifetime ago that I was one of those patients. In fact, it was only two years ago that I was suffering through ddMVAC. I hope that immunotherapy will replace chemotherapy, that the success rate will rise, the side effects will diminish, and more lives will be spared.
At least once a week, I review recent questions regarding bladder cancer at www.inspire.com and post responses. I focus on metastatic disease, where I have the most personal knowledge. I also have engaged in a number of one-on-one discussions with patients or their caregivers, and will on occasion point people to my prior blog entries where I have addressed the topic of their question. I also have been told by a number of patients that they have investigated and enrolled in immunotherapy clinical trials after reading of my good fortune. I'm grateful that others have been helped through my chronicles. When I started this blog, I had no idea what it would turn into. And I have no idea how long it will go.
Thirty six years ago, Dan Fogelberg released an album entitled Phoenix. The last song on the flip side of the record was titled, Along The Road. Recently I've thought about those lyrics in light of my journey with bladder cancer:
Joy at the start, fear in the journey
Joy in the coming home
A part of the heart gets lost in the learning
Somewhere along the road
Joy in the coming home
A part of the heart gets lost in the learning
Somewhere along the road
Along the road your path may wander
A pilgrim's faith may fail
Absence makes the heart grow stronger
Darkness obscures the trail
A pilgrim's faith may fail
Absence makes the heart grow stronger
Darkness obscures the trail
Cursing the quest, courting disaster
Measureless nights forebode
Moments of rest, glimpses of laughter
Are treasured along the road
Measureless nights forebode
Moments of rest, glimpses of laughter
Are treasured along the road
Along the road your steps may stumble
Your thoughts may start to stray
But through it all a heart held humble
Levels and lights your way
Dan Fogelberg died of metastatic prostate cancer in 2007, at age 56.Your thoughts may start to stray
But through it all a heart held humble
Levels and lights your way
As for me, I can't say that my journey with bladder cancer started with joy, and certainly there has been fear along the way. But I have found many unexpected joys, and look forward to many more moments of rest and glimpses of laughter somewhere along the road.
Saturday, September 26, 2015
CR Day 95: 15th Opdivo infusion
On Thursday I spent a good chunk of the day at Hopkins for my 15th infusion of nivolumab pursuant to my clinical trial protocol. Dr. Hahn was pleased to see that my long-lingering congestion had finally cleared up, and said that my bloodwork was perfect. As usual, it took the Hopkins pharmacy longer than promised to compound my custom-made sack of liquid, but I spent the time researching how to repair our various cars.
In the past few months, almost every motorized transportation device that we own seems to have quit working. All of our cars have over 100,000 miles, and are showing their age. Jennifer's Jetta needed a new transmission. Kirsten's Jeep needed a new clutch as well as a new master and slave cylinder. Spencer's Honda threw a rod and blew the engine; we replaced it with a used JDM VTEC. My Audi needed new CVT boots, valve covers, serpentine belt. On Thursday I learned it needed a new high pressure power power steering line. The mechanic explained that replacing the hose takes more than 10 hours of labor: remove the front bumper, radiator, wheel, hub, ball joint, and power steering pump. I think I'm done with all things Audi. Even the riding lawn mower has stopped working. And the boat down at Lake Anna needs a new engine, not that we have anywhere to stay since the lake house is down to the studs following the remediation for the water leak and mold. Life is good.
Everyone but me is back in school: Garrett is in his last year of high school, busy in marching band and worrying about college applications. Over the summer Kirsten moved back home, transferred to GMU, and changed her major from business to social work. Spencer is on track to graduate next year from GMU, and is thinking about getting his MSW. And Jennifer is finishing her MSW work at GMU. (Apparently karma requires three social workers in the family to offset all the damage that one lawyer has done.) Jennifer also is working 20+ hours a week with Life With Cancer, a non-profit largely funded by Inova Hospitals. She counsels patients and their families as they navigate the shoals of the sea of cancer. She's made of pretty stern stuff to do that.
With no job or school commitments, earlier this month I spent 10 days in Utah playing with my granddaughters. Rose and I read hundreds of books, had a Curious George binge party on Netflix, went to the train museum and parks, and celebrated her second birthday. Lily is 4 months old and is a roly-poly happy baby. I also visited with extended family, and enjoyed some long drives in the Wasatch Mountains. I grew up in those mountains, and each time I am in them my troubles seem to get a bit smaller, and my gratitude to God grows.
In the past few months, almost every motorized transportation device that we own seems to have quit working. All of our cars have over 100,000 miles, and are showing their age. Jennifer's Jetta needed a new transmission. Kirsten's Jeep needed a new clutch as well as a new master and slave cylinder. Spencer's Honda threw a rod and blew the engine; we replaced it with a used JDM VTEC. My Audi needed new CVT boots, valve covers, serpentine belt. On Thursday I learned it needed a new high pressure power power steering line. The mechanic explained that replacing the hose takes more than 10 hours of labor: remove the front bumper, radiator, wheel, hub, ball joint, and power steering pump. I think I'm done with all things Audi. Even the riding lawn mower has stopped working. And the boat down at Lake Anna needs a new engine, not that we have anywhere to stay since the lake house is down to the studs following the remediation for the water leak and mold. Life is good.
Everyone but me is back in school: Garrett is in his last year of high school, busy in marching band and worrying about college applications. Over the summer Kirsten moved back home, transferred to GMU, and changed her major from business to social work. Spencer is on track to graduate next year from GMU, and is thinking about getting his MSW. And Jennifer is finishing her MSW work at GMU. (Apparently karma requires three social workers in the family to offset all the damage that one lawyer has done.) Jennifer also is working 20+ hours a week with Life With Cancer, a non-profit largely funded by Inova Hospitals. She counsels patients and their families as they navigate the shoals of the sea of cancer. She's made of pretty stern stuff to do that.
With no job or school commitments, earlier this month I spent 10 days in Utah playing with my granddaughters. Rose and I read hundreds of books, had a Curious George binge party on Netflix, went to the train museum and parks, and celebrated her second birthday. Lily is 4 months old and is a roly-poly happy baby. I also visited with extended family, and enjoyed some long drives in the Wasatch Mountains. I grew up in those mountains, and each time I am in them my troubles seem to get a bit smaller, and my gratitude to God grows.
Wednesday, September 9, 2015
CR Day 78: 14th Opdivo infusion
Two weeks ago, I didn't get a nivolumab infusion because I had so much lung congestion. Dr. Hahn didn't think that I had pneumonitis, but decided that the safest option was to postpone the infusion and wait for the congestion to ease. The day after I started the Z-pak of antibiotics, I noticed at my mucus changed from green to clear -- a good sign. But after 10 days I still had a productive cough, and began to wonder if I was in the 3% of nivolumab patients who develop pneumonitis. I reviewed the recent literature regarding nivolumab and pneumonitis and was concerned enough to send the following email to Dr. Hahn:
After a two and a half hour wait for the pharmacy to compound my drug, I laid down in the infusion chair and read a recent Grisham book (Calico Joe) during the infusion cycle. It's old hat by now, but nevertheless I am grateful for each infusion, thankful to the doctors, nurses, and techs who provide my care, and for the years of research and hundreds of millions of dollars of investment by Bristol-Myers, that have made possible the administering of this drug.
Tomorrow I am off to Utah to get some more granddaughter time: it will be Rose's second birthday, and I can't wait to read some books with her, and also hold little Lily. When I think of joy and rejoicing in my posterity, this is what it's all about.
As it turned out, after I sent the email I noticed a significant drop in the amount of mucus in my lungs. So yesterday I braved the post Labor Day traffic around the DC beltway and made my way to Hopkins. My port was easily accessed and my labs were fine (although my glucose was a bit higher than usual, probably due to my mobile breakfast of blueberry pop tarts). I met with Dr. Hahn and Galina, the clinical trial nurse. Dr. Hahn was happy to hear of my recent improvement, but carefully listened to my lungs to verify the drop in congestion. He didn't think that my congestion was pneumonitis caused by my Opdivo therapy, but instead likely was due to a combination of a bacterial and viral infection from Africa to which my body was unaccustomed. He said that he was ok with proceeding with today's infusion, but that I should immediately notify him if I noticed any increase in bronchial mucus. If that happened, he'd recommend that I start on a steroid and not have any additional nivolumab treatments until the lungs were completely clear.An update before the Labor Day weekend: The good news is that the day after starting the Z-Pak, my bronchial mucus went from green to clear. The bad news is that I still have lung congestion and a productive cough, albeit not quite as bad as it was when I saw you last week. This type of lingering chest congestion is very unusual for me. I am wondering if I might be developing the type of anti–PD-1–related pneumonitis that has been observed in a few of patients treated with nivolumab, and as described in Dr. Nishino's July 16, 2015 JAMA letter. I'm scheduled to see you again on Tuesday, Sept. 8. Let me know if you want me to come in earlier in the day for another CT, have a pulmonologist consult, or whether I'm jumping at shadows.
After a two and a half hour wait for the pharmacy to compound my drug, I laid down in the infusion chair and read a recent Grisham book (Calico Joe) during the infusion cycle. It's old hat by now, but nevertheless I am grateful for each infusion, thankful to the doctors, nurses, and techs who provide my care, and for the years of research and hundreds of millions of dollars of investment by Bristol-Myers, that have made possible the administering of this drug.
Tomorrow I am off to Utah to get some more granddaughter time: it will be Rose's second birthday, and I can't wait to read some books with her, and also hold little Lily. When I think of joy and rejoicing in my posterity, this is what it's all about.
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