Being an Advocate with Your Oncologist

Several people who commented on FB about my most recent Cancer Couple post mentioned being an advocate for yourself with your doctors.  I think this is very important, and part of my perspective comes from my father’s treatment for melanoma in the 1970’s at M D Anderson.

His original melanoma and associated lymph nodes were removed from his back in Corpus Christi, but when the melanoma returned a few months later in a lymph node under his arm, he decided to go to M D Anderson for treatment.  After surgery they threw a variety of treatments at him, probably all that were being tested at the time.  They thought his cellular immune system was responding weakly, so he was treated with BCG (Bacillus Calmette-Guerin).  This required my mother to scratch the outline of a three-by-three matrix of boxes on his skin and then rub the bacillus into the scratches.  When his cellular immune system was strong, the scratches would demonstrate a response by becoming inflamed.  By the end of his treatment, he had matrices all over his body like pro football players have tattoos today.  They tried another immune treatment that I’m not clear about.  They may have grown his tumor cells and his killer t-cells in the lab, mixed them up, separated the t-cells and injected them back into his bloodstream hoping that they were fortified and would be active against any residual cells.  Finally they used a nasty chemotherapy agent called DTIC which put him into a state of extreme nausea and fatigue for several days.

After a number of treatments with DTIC and BCG, my father told me he was under tremendous stress because all he could think about between DTIC infusions was his dread of the next infusion.  As a graduate student at UT, I had access to the Texas Medical Society library in Austin and read all I could find on melanoma.  I was also reading about research on how stress depresses the cellular immune response in some people.  After my father told me about his pervasive stress from the DTIC, I wrote to his oncologist.  I told him that my father would never tell him about the stress associated with the DTIC and asked whether the DTIC might be reducing the effectiveness of other treatments.  Perhaps it had done all it could and should be terminated.  He wrote a nice letter back saying that if my dad had asked that the treatment be stopped, he would have done it, but he couldn’t do so on my request.  At the next DTIC infusion my father again did not tell his doctor about how hard the chemo had become, and he passed out from the stress during the infusion.  The doctor stopped the DTIC.  A few days later when my mother gave him his next BCG treatment, he had the strongest reaction he had ever had.  I believe he even had fever that time.  His reaction seemed to me to demonstrate the impact of stress on some people’s immune system, and the importance of being frank with your doctor about how the treatment is going.

My advice to new cancer patients is to learn all they can about their disease.  Your treatments may not be routine and well understood but derived from thinking at the edge of scientific knowledge.  If you have any concerns about how your treatment is going, tell your doctor—better to ask about your concerns that to carry the stress of wondering in silence.  Remember, however, to go to established, respected sources such as MD Anderson, the Mayo Clinic, the National Cancer Institute, etc.  There’s a lot of whacko information out there on Dr. Google that you should be leery of.  Then discuss whatever questions you have with your oncologist.  I’ve been very fortunate to have doctors and surgeons who admit the limits of scientific knowledge and acknowledge that the optimum treatments have not been discovered.  Progress in cancer treatment has been made and is being made, like Gleevec, Jana’s miracle drug, but there is much to be learned—many questions yet to be answered—so don’t be shy about asking questions or expressing your needs. 

In case you are wondering, my father beat melanoma which did not happen often at that time.  But ironically he beat cancer only to die of Alzheimer’s some years later.    

September 2015 Update

Back on March 6, I wrote that Jana was no longer taking Gleevec for her CML, and subsequently the minor problems that seemed to be associated with Gleevec and/or CML have disappeared.  On May 20 and again on September 16, she had the blood tests that looked for evidence of CML, and both showed no sign of the disease.  The disease has been undetectable two years, and seven months of that time has been without taking Gleevec.  We have to wonder if she is cured, or will the aberrant cells pop up again?  At any rate, we are extremely happy with the good news and hopeful of a long-term prognosis or even a cure.

Then in April, I wrote about how it seemed that my chemotherapy (pemeterxed) was taking a toll on my body and causing increasingly greater fatigue and many premature ventricular contractions (PVCs).  On May 6 I started another three cycle dose of pemetrexed and found that the beta blocker for the PVCs had helped, but I was still very glad when that cycle ended.  After a very good recovery period from late June until mid-September, I faced the question of whether or not to go back on chemo.  I have a belief (scientific or not) that stress lowers one’s ability to fight disease, and I am afraid that the stress associated with chemo is counteracting the chemo’s benefits.  My CTs show that my tumors have not changed significantly in a year and a half which makes me wonder if that is because the chemo is not effective or because stress has worked against it?  Also my physical condition is poor which I think makes me more prone to fatigue and the PVCs.  I talked the question over with my oncologist and decided to forego chemo until December and use the time to work on getting healthier.

Last weekend I went to a cancer health and wellness conference sponsored by the Anschutz Health and Wellness Center at the University of Colorado Hospital primarily to hear my oncologist give the keynote address; however, I also learned of a personalized exercise program for cancer patients run by the center.  I signed up for the three month program which should put me in better shape to resume chemo in December.  Will being fitter mean that my tumors are also fitter and able to grow faster or that my immune system will be better able to hold them in check or neither?  We’ll have to see.  Another experiment with an N of 1 in the Doss cancer story.

David

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.