A New Wrinkle in My Health?

Since we moved to Denver, I‘ve had 31 infusions of pemetrexed spread over four cycles since December 2011.  The cycles lasted from about four to eight months each and were separated by four chemo breaks lasting from four to ten months.  I get my infusions on Wednesdays, and in most cycles I would feel unwell and suffer from fatigue starting Friday evening.  I would begin feeling better late on Sunday afternoon and get pretty well back to normal by Wednesday.  I get pemetrexed every three weeks, so I’d feel good about two of every three weeks of a chemo cycle.

Near the end of the last extended chemo cycle (from March-September 2014), I became fatigued during the second and third weeks also, so much so that I qualified for supplemental oxygen.  I felt so bad that I terminated that chemo cycle earlier than I might have otherwise.  As I noted in an October Cancer Couple post, I attributed my increased fatigue to changes in my red blood cell count, and I was taking a chemo break to let my body readjust.  I began chemo again at the end of December and completed the third round of my new schedule at the end of February. 

In addition to the increased fatigue and shortness of breath, I had become increasingly bothered by premature ventricular contractions or PVCs.  A PVC occurs when the heart ventricles, the chambers of the heart that pump blood out to the lungs and the body, contract before they have had time to refill following the previous contraction.  When I saw my primary care physician in January I told her about my PVCs and she ordered a Holter monitor test.  A Holter monitor is a sort of portable electrocardiogram that you wear for 48 hours.  The test was done in February and showed a large number of PVCs.  I finally saw a cardiologist a couple of weeks ago, and she ordered a stress echocardiogram for last Friday.  The test showed a possible weakness in the contraction of my ventricles.  The thinking was that a blockage of a coronary artery reduced the blood flow to the ventricle wall resulting in a weak contraction.  Consequently, an angiogram was scheduled for yesterday.  The angiogram would produce a movie of the movement of blood through my coronary arteries after the injection of a dye which would reveal any blockages.  If any blockages were treatable, a stint would be placed to open up the artery and ultimately restore full blood flow.  If the blockage could not be repaired, it would be necessary to undergo a coronary bypass operation.

All of a sudden my view of my fatigue and shortness of breath was radically altered.  I had been attributing my symptoms to some kind of cumulative impact of chemo.  Now it was possible that my problem was plain old coronary heart disease.  No one wants to have coronary heart disease, but the silver lining would be that it could be treated, and my symptoms would be alleviated.

I had the procedure yesterday.  So, what were the results?  I had no blockages.  My pipes are clean which is good news, but there no easy route to symptomatic relief.  My symptoms appears to be the result of my mesothelioma, chemo, and/or a general lack of physical fitness.  I am taking a beta blocker now that helps a lot with the PVCs, and I will adopt a fitness program to try to counter my fatigue and shortness of breath.  I start chemo again on May 6, and it will be interesting to see how I do this cycle. 

David

PS  I write this blog to record our experiences with cancer for several reasons, one of which is the desire to record early 21^st century medical practice for our grandchildren and great-grandchildren so they can marvel (I hope) at the crude nature of medicine in our time.  What follows is a description of the patient’s experience of getting an angiogram.  I doubt that it will be of interest to current readers.

An angiogram is a procedure for recording moving and still images of the heart using x-rays.  I expect there are multiple uses of angiograms, but in my case the purpose was to see if any coronary arteries were blocked.  The coronary arteries supply oxygenated blood to the heart.  If they become partially blocked, the heart is weakened.  Complete blockage deprives heart tissue of oxygen and results in cell death.

Here’s what happened in my angiogram.  The procedure took place in the Cath Lab, a large room with a high, narrow bed in the center.  I climbed up on the bed and centered myself left to right.  On each side was a sort of shelf for the arms.  The procedure required one or more thin tubes known as catheters to be inserted into an artery and threaded up to the aorta and then to the coronary arteries of the heart.  The arteries lie on the outside of the heart and therefore are easy to see with x-rays.  The catheters can enter the femoral artery at the groin or at the radial artery at the wrist.  The wrist artery is smaller than the groin artery but easier to access.  To get me ready, the nurses attached electrocardiogram leads to my side and shoulder, attached a blood oxygen sensor to my right thumb, and cleaned the possible insertion areas with alcohol.  Then they, covered me with sterile drapes and with a large overall drape that ran from my neck to the end of the bed and all the way down to the floor.  Then all of the equipment in the room was covered with clear plastic elastic covers.  Running parallel to the bed on my left side was a very large computer screen (perhaps four by eight feet in size) which displayed my vital signs and the electrocardiogram results with about ¼ of the screen reserved to display the angiogram pictures.

When I had been prepped, three doctors came in to join the nurses, and there was at least one person in an adjoining room electronically monitoring (and recording?) the procedure.  I had an intravenous line attached to my port, and a nurse began giving me medication through the IV.  I got a drug for pain, and one for anxiety.  I was quite relaxed but awake.  The one doctor inserted a catheter into the radial artery of my right wrist about 1.5 inches below the bottom of my hand.  She then began threading the catheter up through the artery to the aorta and into the coronary arteries. 

I really wanted to watch this on the screen, but the x-ray head blocked my view.  Another doctor controlled the position of the x-ray head with his legs (I think) while the young cardiology fellow moved it into position.  When the catheter was in place, she injected a contrast agent or dye into the artery.  Had the artery been blocked the dye would not have moved quickly throughout the artery.  In my case there were no blockages, so the dye flowed quickly onward.  I believed that they imaged the left coronary artery first.  The third doctor in the room, who was not fully gowned, came over and told me that the artery was clear, and the echocardiogram had been a false positive.  Then they moved to the right artery.  Apparently the fellow was having some difficulty getting the catheter in the right place, so the second doctor took over guiding the catheter for a little bit.  Then the third doctor was fully gowned and he came over and got it in place.  It was interesting to note the differences in the work of the three doctors.  The first two had pressed more firmly on my wrist while working, but the third doctor pressed more gently and seemed to transmit a sense of relaxation and confidence in his actions.  Was it my imagination or did his touch reflect his experience.

When they had pictures of both arteries, I got to view them on the screen.  Then the catheter was quickly extracted, my wrist was bandaged with an inflatable bandage that pressed down on the insertion point, the nurses unhooked me, and my procedure was over.  One nurse wheeled me back to an examination room with a reclining chair.  The nurse there check me out, called Jana so she could come back, and got me something to eat.  I had not been able to eat since 3 am that morning or to drink anything after 7 am.  It was about 2:10 pm, so I was ready for some lunch.  Jana and I sat there reading our books until about 4:30 pm when the nurse began letting air out of the wrist bandage.  When it appeared that the wound was not going to start spurting blood across the room, she put on a bandage, and we went home.  All in all, it was an interesting experience.

Gleevec Be Gone!

Ever since Jana was diagnosed with chronic myelogenous leukemia in early June 2010 she has taken the great cancer drug Gleevec which produced a dramatic drop in the number of cancerous cells in her blood. By October 2010 the level was only .05%. The percentage continued to decline slowly. By June 2011 the level had dropped to .001%, and the cells have been undetectable since July 2013, putting her CML in remission. That does not mean necessarily that there are no rogue stem cell still making defective white blood cells, but they are too few to be found by the test.

Jana's side effects from Gleevec have been minimal, and she has been able to live a normal life; however, in recent months she has had increasingly frequent blood vessel hemorrhages in the sclera of her eyes as shown in the picture above. (Not her eye but mine.) In the month of February alone she had seven breaks, sometimes in both eyes at the same time. These hemorrhages are apparently the result of a side effect of Gleevec--a decline in platelet function but not in platelet count. Platelets are the cells that form blood clots. If platelet counts drop too low, we are at risk of hemorrhages or blood loss from injury. The same is true if the platelets are not functioning properly even when the count is normal. It appeared that breaks in the blood vessels of the sclera that would normally have been prevented by the platelets were no longer being blocked.

At her scheduled visit with her oncologist at the end of February, Jana showed him her record of the hemorrhages. He was concerned and sent her to see an ophthalmologist to verify that nothing was wrong with her eyes. The ophthalmologist saw nothing wrong with her eyes but referred her to another ophthalmologist who is a specialist in the outside of the eye. His conclusion was that her eyes are in good condition, and that the blood vessel breaks were likely the result of CML and/or Gleevec. Since her cell count has been undetectable, it seems likely that the breaks were not caused by CML but by Gleevec.

Research has shown that when CML patients stop taking Gleevec, and their cell counts rise again, restarting Gleevec can control the disease once again. Furthermore, there are now several other CML drugs that are as effective as Gleevec, so Jana has decided, with her oncologist's approval, to stop Gleevec. She will continue to record her eye hemorrhages and have blood tests for the rogue cells, and if her CML returns she will start Gleevec or another related drug. It will be interesting to see if her other side effects diminish. 

David 

Back in the Chemo-Chair Again*

Back in the Chemo-Chair Again

Back in the chemo-chair again.
Back with the poison flowing in.
Well, the pillows here are nice,
'Cause they don't transmit no lice.
Back in the chemo-chair again.
 

Sorry about the line about lice, but it was the best I could do (chemo-brain?), and each patient does get a fresh pillow.

This was my 28th pemetrexed infusion at the University of Colorado Hospital since the fall of 2011.  I had six more in combination with cisplatin in Texas before moving to Colorado.  This was the first in my new chemo schedule--three three-week infusions followed by a nine-week break to allow my body to recover.  I'm looking forward to see how this works out.  Will it improve my sense of well-being?  Will it be as effective in holding my tumors at bay?  Time will tell.

*Sung to the tune of "Back in the Saddle Again."

Taking a Chemo-Break and Recharging the Battery

I had a CT scan yesterday, and saw the nurse practitioner who works with my oncologist today. Nine weeks after starting the latest round of chemo in March, the first CT showed a decrease in tumor size across the board. Nine weeks later there was no change, The latest scan nine weeks later again showed no decrease. While the nine rounds of infusion have arrested the growth of my tumors, they have also done something of a number on my red blood cell (RBC) count. The count has been in steady decline across the months. The nurse said, the decline in my hemoglobin associated with the RBC decrease is the equivalent of loosing two units of blood--perhaps 25-33%. No wonder I've been dragging around and tiring easily. My fatigue was the worst from 5-9 days after my last infusion when my RBC count was probably at its lowest. I've learned that even with high blood oxygen readings thanks to my supplemental oxygen, a shortage of RBCs can leave me easily fatigued. On Saturday we went on a short hike in Guanella Pass south of Georgetown, CO with my cousin Jodi and her husband Darrell. That mild exertion at 8-9,000 feet and almost three weeks after the infusion left me very short of breath even with supplemental oxygen. It was so bad that I saw red flashes in my visual field for the first and hopefully the last time.

Consequently, I'm taking a break to let my RBC count get back to a reasonable level. In looking over my infusion history since starting to receive pemetrexed in Colorado in December 2011, I found that I have had infusions about half of the time. I proposed (and my oncologist accepted) that we try a pattern of nine-weeks on chemo followed by nine weeks off which will provide chemo 50% of the time. Since I just completed 27 weeks on chemo, I started my nine weeks off today. In five weeks I'll go in to have my port flushed, and I'll get a CBC at the same time which will tell how well my body is replenishing my supply of red blood cells.

Four weeks later, I'll have a CT and meet with the doctor to see if it's time to begin chemo again. I look forward to having more energy and getting in better physical condition.

David

A Visit with Radiation Oncology

In October, 2011, I had a visit with a radiation oncologist at the time my tumors began to grow following my initial chemotherapy. (See the post entitled Tumor Growth? Exploring Cancer Treatment Options from 23Oct11). While Dr. Gaspar was willing at that time to do a work-up on me to see if radiation oncology could be helpful, but did not push it, I decided that there was no need to proceed with radiation and began the course of chemotherapy that has persisted off and on since that time.

With what may be the first signs of possible complications from the tumors—increased fatigue and shortness of breath, and perhaps more right-side pain than before—I asked my oncologist for a new referral to radiation oncology. I had my appointment today, and after a thorough review of my case and a physical exam, Dr. Gaspar once again concluded that there was not much of anything they could do for me now. The risk of side effects from the radiation continues to outweigh any possible benefits. I'll contact her again if problems arise. Jana and I are very satisfied with the outcome of the visit. It seems to make perfect sense.

David

Less Chemo Fatigue. Why?

The latest round of chemo produced significantly less chemo fatigue than normal. Usually, the fatigue begins on Friday evening after my Wednesday infusion and continues through Saturday and Sunday, and then lifts through about mid-week, so that by Thursday, I am most of the way back to normal. This time, I had only minimal fatigue on Saturday and Sunday. Why?

Three possible factors come to mind:

1. Current thinking about chemo fatigue suggests that it is caused, at least in part, by substances called cytokines that are released into the bloodstream by dying cells. It's like the body is telling you, “Hey, you're injured. Find a place of retreat where you can lick your wounds and heal.”

I have an hypothesis that when I begin a new series of chemo after a break (11 months this last time), the chemotherapy agent, pemetrexed, has lots of vulnerable cancer cells to kill, so lots of cytokines are released producing lots of fatigue. Given that pemetrexed only works on actively dividing cells, not all vulnerable cancer cells are killed with the first infusion, so there is a new crop of dividing cells ready to be killed by the next dose three weeks later. It seems to me that there would be fewer cells left that are sensitive to pemetrexed with each infusion; consequently, the fatigue would fade in severity. I have my next CT in a couple of weeks, and my guess is that my tumors will not have shrunk much, if at all, because six round of pemetrexed have gathered all the low-hanging fruit.

2. Perhaps the extra energy from the supplemental oxygen reduced the fatigue.

3. We started a new tradition this spring, and Jana makes me a “chemo cake” each time I have an infusion. This time, however, I got a chemo car instead of the cake. I bought a red, first generation Mazda Miata sports car. Do you think the new car helped fight the fatigue better than a cake?

Hello 2 O2

It's been a while since I've added anything to the blog, but that's because things have been pretty routine. However, since we've been doing more active work outside this summer I've been bothered more by a shortness of breath than before. For example, we recently removed recycled rubber from the walkway between the patio and the back yard, rearranged/replaced stepping stones, and adding pea gravel between the stepping stones. I found that only a little effort made me very short of breath and fatigued, and I had to take frustratingly frequent breaks. When we went bird watching with friends, I typically did not try to walk with the others because of my shortness of breath. Even light exercise like cooking turned me into a certified “mouth breather.”

So when I went to see my oncologist prior to my latest round of chemo, I asked to be evaluated for supplemental oxygen. I took a walk with a nurse, and my pulse oxygen level quickly dropped to the point at which I qualified.

The oxygen equipment arrived that evening—a two-part unit that contained an oxygen concentrator and compressor, two large and two portable oxygen tanks, a sort of pack with a shoulder strap for carrying a portable tank, and several nasal cannulas.

I placed the oxygen concentrator downstairs in the finished part of the basement. The concentrator removes O2 from the air, and a tube attached to the concentrator provides me with oxygen when I'm working at the computer in the workroom, doing something at my workbench in the basement, or watching TV in the family room. The compressor is connected to the concentrator and used to fill the small oxygen tanks for use upstairs and outside.

It's been almost two weeks since I got the oxygen equipment, and my use of it is still evolving. When I requested the evaluation, my concern was to have oxygen while active—doing light exercise around the house, more strenuous activity outside, or while walking in the mountains. It turns out that I use it more while sitting quietly in the house reading, working on the computer, and watching TV. While I don't feel like I really need it at that time, my pulse oximeter shows that my O2 level is below the expected 94% level. While working in the garage, I wheeled one of the larger tanks out there and found that worked better than carrying around the portable tank although it was something of a hassle working like a diver at the end of a long tube, but I enjoyed not getting short of breath. I am interested in seeing how my use changes with experience.

It's good to have the oxygen, but disappointing to need it.

Back in the Chemo Chair Again

Yesterday I had one of my periodic CT scans and got the results from my oncologist today. It's been almost 11 months since my last chemotherapy in April, 2013. Before going to see doctor, I reviewed my old CT or CT/PET reports and found that pemetrexed had generally decreased tumor size slowly while I was receiving it, which led me to think it was time to begin again. The latest report showed continued, slow increase in size, and there was an indication that the cancer in the area of the diaphragm has been pushing down on my liver which is not good. \

I have also been concerned about the mutations that are occurring in the tumors. My understanding is that when cells turn cancerous, the proofreading of the DNA when cells divide is damaged so that copying errors, a kind of mutation, become more frequent. I suppose many of these errors may kill the cells before they can grow, but as in evolution, some persist and reproduce. Some of these mutations give the cells the ability to grow and develop into well functioning tumors by acquiring the capacity to develop needed blood vessels to provide food to the cells and the ability to avoid detection by the immune system, for example. If pemetrexed takes out some or most of the cells that are undergoing cell division, then it may be removing some of the cells that are of benefit to the cancerous tissue and harmful to me. Ultimately the cells may acquire the ability to neutralize pemetrexed, but until that time, the drug can help keep the tumor-positive mutations from taking hold.  

Taken all together, my oncologist wanted me to go back on chemo, and I agreed. They arranged for me to get back into a chemo chair in the infusion center today, and I received my first new round of pemetrexed. I'll be getting chemo every three weeks now and will continue until it stops working, or until there are better options available (for example, a drug that unmasks cancer cells so the immune system can find and kill them). 

Luckily, the side effects of pemetrexed are not horrible, mostly a few days of fatigue, but it is something of an inconvenience and limits our flexibility.

What It's Like in the Chemo Chair

I'm not sure I've ever written about the process of getting pemetrexed, so I thought I'd write a description today in case anyone would find it interesting.

After checking in at the desk, I go to the waiting area while I wait my turn. They have a good selection of donated magazine there, and look for something interesting to read. Then an assistant comes in and takes me back to my chair. The chairs are like large recliners, and are in cubicles separated by walls or curtains and face a wall of windows that look out on the hospital and the mountains beyond. The cubicle has chairs for visitors, a table, a TV, and more magazines.

Then the nurse comes in and we begin. She (always been a woman) verifies my identity and ask questions about my current health that she enters into a computer on a rolling stand. They have to calculate how much pemetrexed I need based on my weight and height, and today I had to have my height measured for this year, and it has to be witnessed by two people.

She then accesses the port in my chest and attaches it to a bag of saline, and she also attaches a bag of Kytril, an anti-nausea drug, that infuses for ten minutes.  In the meantime, the oncology pharmacy is preparing my pemetrexed infusion based on my weight and height. When it is ready, she returns with the drug which is shrouded in a brown plastic bag, and with another nurse they verify who I am, what my patient number is, and what medicine I'm getting. Then the infusion begins and lasts for 10 minutes. She deactivates my port, and I am ready to go.

Most of the time is taken up sitting in the waiting room and waiting for my pemetrexed to formulated. I sit back in the recliner, and I always find something to read. Today I found a copy of Science magazine in the room and had the pleasant surprise of reading an article about the domestication of the dog that quoted Greger Larson, the son of our friends Roger and Jane Larson.

I don't typically like to drive after chemo (even though it does not seem to have any affect on me), so Jana goes shopping while I'm in the chair. Today we went to Schlotzky's for one of their good sandwiches on the way home.

The Cancer Chronicles

I've got a good book to recommend. When science writer George Johnson's wife was diagnosed with cancer he began a detailed study of the disease. His book "The Cancer Chronicles" uses his wife's diagnosis and treatment as a framework for describing what he learned. As we age, cancer seems to enter more and more of our lives, so if you'd like to know more about the disease, I highly recommend this book. Johnson and a great explainer.

http://www.amazon.com/Cancer-Chronicles-Unlocking-Medicines-Deepest/dp/0307595145/ref=sr_1_1?s=books&ie=UTF8&qid=1391718820&sr=1-1&keywords=cancer+chronicles

Asbestos Facts

Last Friday was Mesothelioma Awareness Day, and I have been asked by the Mesothelioma Cancer Alliance ( www.mesothelioma.com) to share some facts about asbestos, the cause of mesothelioma.  I can's say that I support a complete ban of asbestos, but its use should be limited to those that are safe and for which there is no better product. Interestingly, my oncologist says that because there is no heavy industry in Denver that uses asbestos, teachers are the occupational group with the highest incidence of mesothelioma here.