August 3, 2011

First PET Scan in Denver

Today we went in for the results of the scan.  If “glacial” growth in the mesothelioma in the pericardium is good, then I had a good report.  In fact, the tumor grew by only about a millimeter which was within the measurement error of the scans.  That is, they couldn’t say with certainty that the tumor had grown from May to August.  To me that was good news.  The bottom line is that they do not see any reason for intervention when the growth is so slow, and given that I am feeling better than I have at any time since my surgery a year ago, I totally agreed with that strategy.  I’ll go back in early October for a CT scan and blood work to see if there has been any change.  The purpose of the monitoring is to catch any increase in the growth rate of the tumor before I can detect any change in how I feel.  If the growth rate picks up, then we’ll have to consider more rounds of the same chemo I had in Temple or participation in a clinical trial.

One more thing.  When we visited the cancer center in June, the elevator was out of order, so we had to use the stairs to reach the second floor, and I was so winded by the climb that I had to wait a few minutes before checking in at the desk.  Today I purposefully took the stairs and found that I was not nearly as short of breath this time.  My body had made good progress in acclimating to the altitude in Denver.  I still get short of breath at times, but given that my right diaphragm doesn’t work properly, I expect that may always be a problem, and I am happy with the improvement I’ve had.

June 27, 2011

News Article about My Oncologist

This afternoon Jana came across this article about research just released by my oncologist, Dr. Ross Camidge: http://www.uch.edu/about/news/2011/benefit-of-targeted-lung-cancer-therapy-confirmed/  While the clinical trial is not related to my mesothelioma, it provides another example of the kinds of targeted therapies that are being developed.  Traditionally, cancer was treated by cutting it out, poisoning it with drugs that also damaged normal cells (for example producing the numbness and tingling in my hands and feet), and burning it out with radiation.  Now, as the biology of cancer is becoming better understood, drugs, like Jana's Gleevec, are being created to counteract specific genetic/molecular targets.  Perhaps it is just a matter of time before the "war on cancer" can come to an end.  Congratulations to Dr. Camidge and the others working on this new drug, and best wishes for a fully positive outcome.

David

June 25, 2011

New Hospital, New Doctors

This week Jana and I established care with oncologists at the Cancer Center in the Anschutz Cancer Pavilion at the University of Colorado Hospital in Aurora.

Before I get to our meetings, I want to note the use of the word pavilion in the name of the building where the cancer center is housed. Wikipedia defines a pavilion as follows,

Pavilion may refer to a free-standing structure sited a short distance from a main residence, whose architecture makes it an object of pleasure. Large or small, there is usually a connection with relaxation and pleasure in its intended use.

Does it seem starage to you to use pavillion to describe the home of cancer doctors? It is one of several connected, but separate, bulidings that comprise the Anschutz Medical Campus, but it certainly doesn’t have a “connection with relaxation and pleasure”

I’ll have to say, though, that it was a pleasure to meet my two new doctors. After completing the requisite paperwork (permissions, medical history, etc.) and having my vital signs taken, we were escorted to an examination room to await my new doctor. Afer a while, another doctor, whom I was not expecting to see, came into the room, introduced himself, appologized for his Australian accent, and explained that we worked with my oncologist. Unfortunately, the person who organizes the paperwork for new patients has been out of the ofice for a few days, so the doctors had little information about me, and,we spent a good deal of time recapping the history of my mesothelioma. The doctor (lets call him The Aussie), then excused himself and returned a little while later with the doctor I was expecting to see who is from the UK (let’s call him The Brit). We then had a very good discussion of my case, and I learned several things.

1. The Brit and the Aussie are very knowledeable, very likeable, and very good at explaining things clearly. I’ve always thought that the British educational system does an excellent job of identifying and developing talent, and these gentlemen strengthened that belief.

2.  They will review my records when they get them sorted out and present my case to their Tumor Board in, I suppose, a process similar to the review of my case at M. D. Anderson.  The process is used for all new patients and provides a broad-based examination of my medical condition.  I was very glad to hear about this.

3. The plan at this time is to continue with watchful waiting to see if my tumors begin to grow. If I start developing any new sysmptoms, I will contact them, but otherwise, I will go back on August for blood tests and imaging.

4. In discussing the origins of mesothelioma, I learned that teachers have a higher rate than many other occupations. Of course people who work in construction and ship building have much higher rates, but in an place like Denver where the really high-inidence occupations are less common, a good percentage of mesothelioma patients are or have been teachers. I think he said that teachers are the highest percentage of any occupational group in Denver. It seems that school systems looked for cheap insulation in the past and filled schools with asbestos, so maybe I didn’t get my mesothelioma from working in a refinery but from all my years in schools as a student and educator.

5. Finally, we discussed a clinical trial at the National Cancer Institute that I had found online and thought I might want to join. Both doctors had recently attended a international cancer conference where researchers presented the latest reports on their clinical trials, and it was their conclusion that the approach taken in the clinical trial did not seem to be panning out, and at the higher dose levels in this clinical trial, serious side effects were found that had not been observed in the Phase I trial. The substance being tested blocks a cell receptor that is needed for normal cell function, and even though the receptor is found more commonly on some cancer cells, imparing its function produced problems in healthy cells. Participation in the clinical trial is out.

Bottom line—I was really happy with my first visit with these doctors and look forward to having them manage the treatment of my mesothelioma.

Given that Jana’s case is much more straightforward there was not much new in meeting her oncologist who, by the way, is an American. We enjoyed meeting with him and found him also to be very knowledgeable, approachable, and a good communicator. He will see her in September after blood tests done at that time. He saw no reason to change her medication as long as it is working, just like her doctor in Texas.

Our next medical task is to get local primary care physicans. I’m turning 65 next January, so I asked my doctors if I should have a gerentologist, an old folks doctor, as my primary care physician. They just laughed. As one said, “If you went in there, they would think that you had brought your father in for an appointment.” And, “Sixty-five is the new 45.” I assume they would approve of Jana’s 90-year-old mother going to an gerontologist, even though her internist in Texas did say that she was in pretty good shape for someone 65. For her, 90 is the new 65.

David

P.S. Jana says I include more detail than people want to read. I apologize for that, but it is the level of detail I want to have when I read the posts again at a later time.

May 20, 2011

Latest PET Scan Results and Goobye to Scott & White

This week there was once again matter/antimatter annihilation in the Meso-man (see July 4, 2010 post). I had a PET scan on Wednesday and received the results today in my final visit with my oncologist at Scott and White. The PET scan identifies areas of greater-than-average metabolism within the body. Bright areas that are not typically hypermetabolic are usually associated with cancer because of its rapid rate of growth. My scan showed no new areas in my thorax or anywhere else. Furthermore, some previously observed activity was not evident this time. That probably doesn’t mean that the body cleared out some cancer cells but that tissue that was hypermetabolic in response to my previous surgery returned to normal. At this time there are only two small areas of hypermetabolism, and they remain stable when compared with my last PET in January.


That is all good news. At this time, I don’t think I have any symptoms that are the direct result of the cancer; however, I still become more short of breath than I should when I exercise, but that may be the result of my surgery and my lack of exercise. We met briefly with the surgeon who did my pleurectomy last July, and he was really surprised at how good I look. He mused that it may be better that they did not remove my lung then because my quality of life might not be as good as it is now. For all medical science knows and can do, there is still a lot of uncertainty associated with some medical decisions. It has been a year since I was diagnosed with mesothelioma. While the data for determining survival rates is not very good, the expectation is that half of mesothelioma patients die within a year of diagnosis. I feel very lucky to be where I am with the disease and continue to hope to remain in the long tail of the survival curve (see “The Median Isn’t the Message.”).

Because we are moving to Denver in two weeks, this was a time to say goodbye to the doctors and nurses who have taken care of me here. They are uniformly impressive human beings—friendly, competent, caring, and of excellent character. I already have an appointment with an oncologist in Denver, and Jana should get her appointment today or Monday. We are hoping that they are equally as impressive.

David

April 20, 2011

Good Leukemia News

We went to see Jana's oncologist this afternoon and received good news.  Last summer, seven percent of her white blood cells showed the Philadelphia chromosome--the abnormality that causes her chronic myelogenous leukemia.  As of a couple of weeks ago, the value is down to .016 percent.  She has gone from 600 per 10,000 cells to less than 2 per 10,000 cells.  The goal is to get to an undetectable level, and while she's not there yet, she is continuing to get better.  She feels very good and has only occasional minor side effects.  All in all, an excellent report.

Her doctor also said for me to hang in there because he is working to set up an FDA trial of a new chemotherapy for mesothelioma.

March 18, 2011

Doctor's Appointment after Final Chemo

It's been five weeks since my last chemotherapy. I had an appointment with my oncologist today to get the results of recent lab work and a CT scan. My blood and kidneys are in good shape. The CT scan showed an increasing accumulation of fluid near the pericardium that will be examined with an echocardiogram in a little over a week. The doctor doesn't think it is anything to worry about, but then they never thought they would find mesothelioma when they did the thorascopy either.  The cancer in the pericardium cannot be imaged by a CT scan, so there is no way to know if it has changed; however, the tumors that can be seen in other parts of the right chest, seem to be smaller than in the last scan.

My blood sugar levels are high again as they were a few years ago, so he started me on metformin. That and elevated blood pressure may be at least partly the result of the chemotherapy. We'll have to see what happens with time. I am looking forward to the echocardiagram, however, because I have not had that test before. Another opportunity to learn.

I want to urge you to take a look at the Uncle Sam and Gini entry if you have not done so yet. If you make it to the end, I’d be curious to know what you think.

There's not much cancer news now, so if you check by here periodically, you might want to extend the time between visits because I do not expect to write any new posts for a while. If I do, I'll put a note on Facebook so my friends there we know to take a look at Cancer Couple.

Best wishes for a beautiful spring (or fall for those in the southern hemisphere).

David

February 17, 2011

Uncle Sam and Gini

Returning to the States in 2008, I was struck by the extreme range of income visible in the US compared with the military communities with which I had been associated overseas.  Over the past two and a half years, I have become convinced that income inequality is a serious problem for the US and wrote a piece to put my thoughts in order. 

I would be honored if you would take a look at Uncle Sam and Gini in the Other Pages column on the right, and let me know what I got wrong in my analysis.

Thanks.

David

February 12, 2011

This and That

Second Time to Ring the Bell

I don't know if they do this everywhere, but both the M. D. Anderson Cancer Center and Scott & White Healthcare have a big brass bell that patients ring when they have completed a course of cancer treatment. I rang my first bell at M. D. Anderson in late February, 2002 when I completed my radiation therapy for prostate cancer. Yesterday, I rang the bell after completing my chemotherapy for mesothelioma. It's possible that I'll have one or more additional chemotherapy courses later, but I'm glad to be done for now.

I'll go back for a PET scan and blood work in a month. and the results will set a baseline against which to compare scans and blood work every two months after that.

Jana's CML Blood Test Results

We also got blood test results for Jana yesterday. By mid-July, four weeks after starting Gleevec, Jana's white blood cell count had dropped about 96% and into the normal range. It has remained low since then, and the count on January 20 was actually slightly below normal.

The results of a more sensitive PCR blood test using DNA has also been positive. The test compares the ratio of the cancerous product of the cancer cells with the product of a ubiquitous product of all cells. The goal is to reach zero percent which is called the complete molecular response. At that point there are probably still aberrant stem cells turning out cancerous white blood cells, but the number is too small to be detected by the test.

Here are the results of her three PCR tests for the BCR/ABL translocations.

July 14, 2010: 6%

October 14, 2010: .05%

January 31, 2010: .04%

The change from October may not be particularly meaningful. It's in the right direction, but could be a result of the unreliability of the test. The report provides no interpretation. However, given the 96% drop in the WBC count in the four weeks prior to the first PCR test, I imagine the drop by October would be considered what they call a major molecular response. A complete molecular response is usually accomplished within 12-18 months of treatment with Gleevec, so the timeline for the complete molecular response stretches many months in the future.

David

January 21, 2011

Oncologist Visit and PET Results Prior to Chemo Round 5

On Thursday, I had an appointment with my oncologist prior to the start of my fifth round of chemotherapy. We reviewed the results of my PET scan (see post from July 5, 2010 ) from the day before, and the results were positive. There has been no spread of my mesothelioma outside of the right half of the thorax, and those nodules showing enhanced sugar usage have remained stable. The current PET was compared with one from June before the removal of the tumors in July, and the absence of those tumors was noted. I also learned that my 6th, 7th, and 8th ribs were broken in the rear during my July surgery in which the 7th rib was removed, and the breaks have healed. I judged it to be a positive report.

I also asked about the growth curve of my tumors. I assumed that the size of the tumors would increase geometrically because each cell division doubles the number of cells. For example, one cell becomes two, then the two cells divide giving four, etc. I assumed that growth would be rapid near the end of life, but the doctor said that was not a characteristic of this disease. The growth rate is more linear. That was reassuring because I do not want to be caught up short at the end. As the end comes near, things have to be put in order, and explosive growth might be a problem; however, it might mean a longer period of suffering.

I also learned that I will have only six rounds of chemo instead of eight. I don’t’ know where we got the idea that I would have eight rounds, probably from the thoracic surgeon, but I was pleased to know that I will have only to do one more. Then the imaging will be updated to form a baseline that will be repeated every eight weeks.

All in all, I found it to be a positive appointment, and I think I am still in the long tail (see The Median Isn't the Message in the Other Page Section).

David

January 12, 2011

Chemo: Round 4

I began my fourth of a possible eight round of chemo therapy on December 30. It has become somewhat routine now in terms of my knowing what to expect at different points in the cycle; however, this round involved a new wrinkle—monitoring my blood sugar levels. In the weeks prior to this round, I discovered that my blood sugar levels were high. Several years ago, I was borderline for diabetes, so my doctor started me on metformin, and I began to watch my diet, lose weight, and exercise regularly which allowed me to reduce my blood sugar to acceptable levels and get off of the metformin. Since I’ve developed cancer and had the various surgical procedures and chemotherapy, I have stopped exercising and my weight has crept up somewhat, and my blood sugar levels are higher than they were before I started taking metformin.


I talked to my doctor about my blood sugar levels before beginning round 4. He said the steroids were likely the cause of the high glucose levels and at first suggested not taking them this round. Then after some discussion, the decision was to continue with the steroids but to monitor my blood sugar. The normal routine with the steroids is to have two pills at the time of the chemo infusion, then to take two in the morning and two in the evening for two days then one in the morning and one in the evening for two and a half days.

When my blood sugar level hit 436 at 10 pm on the first day after chemo and was at 374 the next morning, I took two steroids and began looking at other options. Given that it was the New Years weekend, I did not try to contact my doctor or the oncologist on call but did some reading on the internet. I knew from previous reading that Benadryl has anti-vomiting properties, and I had heard it being given by IV to a nearby woman in the infusion room, so I begin looking at the recommended dosage for nausea and if there were any drug interactions between Benadryl and the other drugs I was taking.

From what I could find, it looked like Benadryl is a very safe and very useful drug, so I decided to take it in place of the steroids and hope that my nausea would be controlled. I would taper off the dose just as the steroids were tapered off, and stop the Benadryl on the same schedule as the steroids. It worked. The doctor had said that he was concerned about blood sugar reading above 300, and by the day after stopping the steroids my levels stayed below 300. My levels are still too high, so I will have to talk with the doctor about where to go from here, but I was pleased that I was able to get below 300 without nausea.

Fatigue was a bigger problem than usual this time. Usually on about the fourth day after the infusion, I hit a wall of fatigue that lasts for four or five days. This time, it seemed worse than before, and I did little those days; however, by a week or so after the infusion, I was sufficiently energetic to work most of the day in the yard raking, mulching, and bagging leaves. From what I can tell, the cause of fatigue associated with cancer treatment is not well understood. I had some fatigue when undergoing radiation treatment for prostate cancer. I hypothesized that dying cells gave off compounds that told the body that it was injured and to take shelter and lie low. If so, then it seems that my chemotherapy must be killing more cells than my radiation did because this fatigue is much greater than what I had before.

David