Sixth Cancer Anniversary

Yesterday marked the sixth anniversary of my diagnosis of mesothelioma and is less than two weeks short of Jana's diagnosis of chronic myelogenous leukemia (CML).  I thought I'd take the occasion to post a brief status report.

Readers will recall that Jana went on the miracle drug Gleevec upon diagnosis and steadily improved.  It has been over a year now since she stopped taking Gleevec and as of her last blood test this week her cancer cells are still undetectable.  They have found no evidence of the disease for more than 26 months.  Does that say cure to you?  I don't think the doctors would ever use the word, but it seems like a cure to us.

My mesothelioma will never be cured, but I have lived much longer than I ever expected.  About half of all people with mesothelioma die of the disease within the first year.  Only a small percentage live as long as I have.

Why have I lived so long?  Late last year, I thought I might have found part of the answer when I read about a gene (BAP-1) that predisposes those who carry it to mesothelioma, and those who get the disease seem to live six times as long as those without the gene.  In response, I asked to be tested for the gene.  The results came back about a month later, and I learned that I do not carry a mutated form of the gene.  There went a possible contributor to my longevity; however, I was glad to learn that my daughters and grandchildren will not have a chance of getting that gene from me.  That puts me back to square one in determining why I am still alive.  I think I've written about this before, but to summarize:

1.  I probably had minimal exposure to asbestos.

2.  My mesothelioma was caught at an early stage because it caused a pleural effusion.

3.  The removal of the pleura (lining of the lung cavity where mesothelioma arises) was done by a very experienced doctor who performs about 10% of all such surgeries in the country.

4.  The thorough removal of the pleura also removed much or most of the asbestos in that lung making the development of new tumors less likely.  I haven't read anything to support this hypothesis, but it make sense to me.

5.  I started chemotherapy right away even though that was not the recommendation I received when I got a second opinion at MD Anderson.

6.  I never panicked about the diagnosis but set a goal of being in the long tail of the survival curve. (See the article by Stephen Jay Gould at the top page of this blog.)  While I have no strong scientific evidence to back it up, I think my expectation of a long survival helped my body slow down the development of the disease.

7.  My chemo breaks allowed my body to recover from the effects of chemotherapy somewhat and made a contribution to my ability to contain the disease.  Again, I have no scientific evidence to back this up, but I have a strong belief that stress alters the body's defenses, so breaks allow the body to recharge itself.

Since early March I have completed four rounds on a new chemotherapy drug, gemcitabine.  It's new to me, but not a new drug.  Each three-week round consists of an infusion on days 1 and 8 with a week off and a new round beginning on day 29.  Gemcitabine or Gemzar is perhaps a little better tolerated than pemetrexed, but causes more days of fatigue than pemetrexed.  I had a CT scan today and have an appointment to begin the fifth round on Wednesday.  At this time, I am not sure whether or not I will have the infusion.

There is an open question in my mind about the degree to which my chemotherapy caused or strongly contributed to my congestive heart failure.  I've had 6 rounds of cisplatin and pemetrexed, 35 rounds of pemetrexed alone, and now four rounds of gemcitabine for a total of 49 times in the chemo chair.  It seems to me that all that poison coursing through my body is bound to have affected all parts of the body to some degree.  I know for certain that my red blood cell count is low and close to the level of anemia and is bound to have caused some of my relatively chronic fatigue.

I have not had a good explanation of how I developed heart failure, but upon reflection, I can see that over the time since my diagnosis I have become weaker and more easily fatigued.  How much is due to the growth of my tumors, my lack of exercise, and the effects of chemotherapy is unclear to me, but together I think they have weakened my heart in ways that would not have occurred otherwise.  My increasing inability to get up and do things is frustrating.  I’ve been going to cardiac rehab twice a week for seven weeks, and I’ve seen some improvement, but not much.

Radiation Completed

Last Thursday afternoon I completed my 14^th and last radiation session. As a quick reiteration, this is how radiation is given.

A styrofoam mold is made of the part of the body to be radiated. The cast is then used to hold your body in the correct position during radiation to reduce the damage to other areas. In this case, I laid on my back for treatment so the cast ran from the waist up to the top of the shoulders and up my sides. M my head rested in another support. I rested my arms on pillows above my head.

The second step is to use lasers and tattoos on my chest to make sure I am in the correct position before the treatment begins.

When all is aligned the techs leave the room, and the treatment begins. An x-ray source then moves around the body to several locations and delivers the treatment. Metal leaves in the machine shift to refine the shape of the beam for that location, and the radiation is delivered.

I first had radiation for prostate cancer in late 2001 and early 2002 at the MD Anderson Cancer Center (MDACC). I had a treatment each day, Monday through Friday, for eight weeks, and each treatment consisted of perhaps 10 different shots aimed at the prostate, each from a different angle. Consequently, the tissue outside of the prostate received much less radiation than the other tissue in the path of the x-ray beam.

I would get up in the morning, eat some breakfast and walk 1.4 miles from the Residence Inn where I was staying to MDACC, get my treatment, walk back, log into the internet, and begin my work day.

What made it interesting was the fact that they wanted a full bladder fat the time of the treatment, so I carried a bottle of water on the way down, and tried to time my drinking to the time of my treatment. Preparing my bladder was probably the most difficult part of my treatment, especially if my treatment was delayed. I had fatigue from time to time to time which kept me from working, but I worked an average of six hours a day. I've always said that if all cancer treatment was as easy and as effective as my prostate cancer, cancer would not be the dreaded diagnosis that it is.

This round of radiation was different. Because my tumor is so intimately associated with my heart, esophagus, and major blood vessels, and is much larger than the prostate, planning the treatments so they do not affect these other organs was difficult. Consequently, the number of treatments had to be reduced. I began to feel more fatigue as the sequence progressed and was told that the level might increase over two weeks following the last treatment. However, it is difficult for me to assess the relative amount of fatigue and lethargy associated with heart failure and radiation. I have learned in the past few days that getting up and moving round every hour or so, and having a cup of tea with breakfast and lunch help. I'm actually feeling better this week than last.

The goal of the radiation is to shrink or “debulk” my tumor so it is not putting pressure on the heart and vessels; however, my radiation oncologist says the she is not sure how much the debulking will accomplish, and my lung oncologist is not completely sold on the notion that my heart failure was caused by the tumor pressing on the heart. We'll just have to see how it plays out over the next few months.

A Stay at "The Lodge"

After having a TIA one Sunday while leaving church, my mother was admitted to Spohn Hospital for observation. When asked if she knew where she was as part of a mental competency assessment, she thought for a minute looked around and said, "Yes, at The Lodge." She had been developing memory problems for some time, and was really creative about covering it up, but where did "lodge" come from? In our family we now sometimes call a hospital "The Lodge." Well, I checked out of The Lodge, University of Colorado Hospital (UCH), Wednesday afternoon after a 10-day stay.

The past two and a half months has probably been one of the most stressful periods of Jana's and my 47 years of marriage. In early December, Jana's mother, Juanita, had a stroke. Early one morning we got a call from her assisted living center saying they were going to call an ambulance. We hurried over and then went on to the Swedish Medical Center ER. At first, the doctor was not sure she had had a stroke, but when I pointed out that she had been “listing” to the right and could not sit up straight, they looked again and found that she has suffered a cerebellar stroke which did not have much affect on her consciousness but seemed to make her very weak.

She couldn't do much for herself, and over the course of the next month slept most of the time. When she was awake, she knew who we are but not where she was and had no memory of what had happened to her. She needed constant reassurance that one of us was there and begged us not to leave her. Atypical behavior for a very self-sufficient person. Of course, we could not be there all the time, and we learned that if we reminded her where she was and what had happened, she would be content for us to leave; however, shortly after we were gone she would be asking for us. Luckily, sleep reduced her distress although one night she pulled out her IVs and they had to put her in “boxing gloves.”

After a week or so, she was discharged and moved to a skilled nursing center. But a few days later, her condition deteriorated, and she was returned to the hospital. On Christmas Day she was released again to the nursing center where she died in the afternoon of January 9.

Since it was clear that Juanita would not be returning to assisted living, Jana closed her account, and we got her furniture and belongings out of her room. Late in the afternoon of New Year's Eve, Jana and I removed her twin bed from her room. We rolled the mattress and box springs out to the back of our SUV for loading. We got the box springs in without a hitch, but the bulky, soft mattress was another matter. In picking it up and pushing it into the back, I hurt my back. Then we had to move the front seats forward as far as we could in order to get the rear door to close, and I had to wedge myself tightly between the passenger seat back and the dashboard. Jana drove because there was no way I could use the pedals.

My back continued to hurt, and on Jan 2 I went to the ER at the University of Colorado Hospital where they took x-rays, saw nothing seriously wrong, and sent me home with pain pills. When I wasn't getting any better after a week, I made an appointment with the clinic where my primary care physician (PCP) practices. After another week with no improvement, I sent my PCP a message, and she ordered at steroid blast to see if that would help. It didn't. Back to the clinic on Jan 25. No improvement.

My condition deteriorated over the month, and I began feeling more and more unwell. The pain frustrating my activity was bad enough, but I found that almost any activity made me feel very short of breath and fatigued. Finally, late in the evening of January 31, I had Jana take me to the emergency room. I think she was little skeptical, but she took me without any protest. The doctors soon told us that my back pain was the least of my problems; I was suffering from congestive heart failure (CHF). They admitted me to the hospital.

I had previously noticed how blood oxygen level, heart rate, and shortness of breath vary with oxygen demand in order to keep the tissues supplied with oxygen. If oxygen demand rises through exertion for example, the O2 level drops, and respiration and heart rate rise in order to restore a proper O2 level. When the body's needs have been met, the three factors stabilize and are constantly adjusted slightly. Across the immediate weeks, I had noticed that my normal heart fate had been rising—from the 80's to the 90's on up to the 120's by the time I went to the ER. With my O2 level and heart rate both high, why was I so quickly fatigued. From what I could tell I should have had plenty of energy. Now I had a reason for; I was suffering from CHF.

My understanding is that congestive heart failure develops when the heart has significant difficulty in pumping blood throughout the body. The continuous stress damages the heart, and each beat pumps less than the required amount, and the heart rate increases to try to make up the deficit. My heart was just limping along. The lower, left chamber of the heart, the left ventricle, contracts with each heart beat to pump oxygenated blood out to the body through the aorta. An ultrasound of the heart was used to measure my left ventricular ejection fraction (LVEF), the percentage of the blood in the left ventricle that is pumped out with each beat. A value of 55% or greater is considered normal. My LVEF was in the 10-15% range.

No one is sure why I developed CHF. I had no preexisting condition that would have suggested I was at risk. It could have been triggered by a virus, but the best thinking is that it has to do with my mesothelioma tumor crowding the heart. Part of the tumor is in the pericardium, the sack surrounding the heart. As it has grown it has begun pressing against the superior vena cava, one of two large vessels that return blood to the heart, and perhaps the right pulmonary artery and vein which move blood from the heart to the lungs and back. At any rate something has messed up my plumbing.

While I was in the ER, they performed a blood test that is useful for a quick screen for CHF, the congestive heart failure BNP. BNP is a substance that is excreted by the pumping chambers of the heart in response to the pressure changes resulting from heart failure. Values range from 0 to above 900. My BNP was 829. Values between 600 and 900 hundred are labeled moderate heart failure. Any value above 900 indicates severe heart failure. I didn't pay attention to this test result until after I was discharged, and it appears that I was in worse shape than I thought. I'm so glad I decided to go to the ER. I felt a little silly having Jana take me, but it turned out to have been the right move.

We had noticed that my ankles were a little swollen, but didn't pay much attention to it.

The first thing they did was put me on a powerful diuretic. In two days I lost something like 20 pounds of water. My weight dropped from the mid-190s to the mid-170's. I don't understand what happened here. For years my weight has fluctuate in the 185-195 pound range. Have I been carrying around 20 pounds of water for years? This requires a little research and discussion with my doctors.

Between Juanita's and my hospitalizations I learned of a medical specialty that I think is a good step forward in medicine—hospital medicine and the hospitalists. These are doctors who specialize in working with patients in hospitals. I am concerned about a downside of specialization, the narrowing of focus of doctors, practicing in silos of expertise. At UCH a patient's regular physicians do not admit them to the hospital. Patients are assigned to a hospitalist who coordinates their care by coordinating with a patient's physicians (e.g., informing my oncologist and cardiologist) and calling in specialists employed by the hospital to plan and coordinate treatment.

Because it appears that my tumor may be causing my CHF, a radiation oncologist was involved in addition to a cardiologist. While I was in the hospital the oncologist reviewed my case and determined that she thought it would be useful to undergo radiation in order to reduce the size of my tumor and give my heart some release. I have been scheduled for a series of 14 radiation treatments which began in the hospital. As of last Friday, I have completed 6 treatments. So far it seems to be going well, and I have not had any noticeable side effects.

So what lies ahead? I'm not sure. Remember the previously mentioned congestive heart failure BNP? At the time of my release, my BNP had dropped from 829 to 86 which falls in the normal range. My treatment has removed the stress from the left ventricle. To maintain that good reading I'm on several drugs and a fluid restricted and low sodium diet. I weigh myself each morning to ensure that I'm not starting to retain water again. I'll know more Tuesday because I have appointments with my radiation oncologist, my regular oncologist, and a cardiologist who is managing my case. They have ordered physical therapy, but I am not sure if it's for my back and leg pain (much improved) or for the heart. The hospital has a cardiac rehabilitation program that I hope to join if it appropriate for my condition.

My mesothelioma has really had no impact on the rest of my body since I was diagnosed almost six years ago. Now it seems to be reaching out of the lung. I'll be writing more as I learn about CHF and as I contemplate it's impact on my survival. Is this the beginning of the end game? But before I close, I want to mention a silver lining of my hospital stay—interaction with nurses, doctors and physician's assistants in training, and the hospitalists. With all of the bad news and rancor in the world today, it is so encouraging to meet these young people and their teachers who are bright, eager, and excited about learning.

New Year Update, 2016

Back in September I wrote that I was taking a chemo break until December in order to improve my strength and energy.  I wrote about a program that I had signed up for at the Anschutz Health and Wellness Center.  I have been following their program and have more energy and strength, and I’ll write an entry describing the program and my results later in the month when I get my final results.

Back to Chemo

In the middle of December, I had a CT and resumed chemo on New Year’s Eve.  The CT before by doctor’s appointment came back with scary word such as,

“interval worsening of the patient's…neoplasm with increase in overall tumor burden as seen by increased thickening and progressive necrosis,”

”extension into the chest wall,”

“intubation of the diaphragm with extensive mass effect upon the underlying liver,”

”near-complete collapse of the right middle lobe and partial atelectasis of the right lower lobe,”

“significant mass effect upon the superior vena cava which is almost completely effaced”  (meaning collapsed),

“frank invasion of the pericardium,” and

“suspicious thickening of the anterior medial left pleura and left sternalis muscle, concerning for metastatic disease.”

The report was arresting because there had not been any such language, at least not in the ones that were released to me.  This report came from a CD of my images which differed from the one automatically released to me through the hospital’s website..

The report seems to have gotten my oncologist’s attention as well because he came in and talked about a clinical trial that I might qualify for (I didn’t), and he said he had some other options in mind as well.

National Cancer Institute Clinical Trial

In response, I started looking at clinical trials online and came across one at the National Cancer Institute (NCI) in Bethesda, MD.  I sent an email asking for information earlier in the week and completed my screening questionnaire yesterday.  I should hear from a referral nurse on or before next Thursday.  I am excited about the trial and want very much to be included.  Here’s a link for anyone who might be interested in the trial: https://clinicaltrials.gov/ct2/show/record/NCT01583686

And here’s a summary of what I understand the trial involves.

1.  If I am accepted, I’ll go to the NCI for a thorough workup.

2.  Then they will remove white cells from my blood and raise billions of new, experimental white blood cells which will be infected by a retrovirus.  The virus inserts DNA into the white cells which will allow them to kill my meso cells.

 3.  Cells display signaling molecules on the outer surface that tell the immune system what kind of cell they are, friend or foe.  When the immune system has been exposed to a foreign cell, it becomes sensitized and kills others as it finds them.  As normal cells change to become cancer cells, they have to mutate in some way to hide from the immune system or they would never develop into full-blown cancer cells.  My kind of mesothelioma cells express an almost unique signaling molecule, called mesothelin, that identifies them, but they also tell the immune system that they are not foreign.  Supposedly, the experimental white cells will have the ability to identify the mesothelioma cells and kill them.

4.  When the experimental cells are ready, drugs will be used to kill many of my white blood cells, and they will be replaced by an infusion of the experimental cells back into my bloodstream.  I will also be given a drug to stimulate the new cells.  I would be in the hospital for probably four weeks as they monitor my progress and problems.  It will not be pleasant, but it could be lifesaving, and I am excited about the possibility of being involved in this research, even if it is as a subject.

If I am accepted, I will document my experiences on the blog.

David