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