September 28, 2010

Back to Chemo?

Last week my case was presented to the doctors in the Thoracic Center at M. D. Anderson. The next day, the radiation oncologist I had seen called to say that the group did not recommend radiation at this time because it was not clear from the scans exactly what should be radiated. Today, I finally got to talk with my oncologist about chemotherapy, and he reported what I had expected. With nothing clearly evident on the scans, the group did not recommend chemotherapy either at this time. They recommended observation by periodic scans. He also said that their pathologists had reviewed my tissue samples provided by Scott and White and confirmed that I had epithelial mesothelioma—the least aggressive kind.

Now I’ll make an appointment with my oncologist at Scott & White to discuss where to go. I guess I’m favoring starting chemotherapy, but not by much. I’ve been reading today about soluble mesothelin-related protein (SMRT), a substance somewhat analogous to the prostate-specific antigen used to identify men with possible prostate cancer. SMRT is produced by mesothelioma cells, and while the lab test for SMRT is not sufficient to diagnose mesothelioma, it might be useful in monitoring its development and response to treatment. I plan to put together a packet of journal abstracts on SMRT and the MESOMARK lab test used to measure it’s concentration and discuss them with my Scott & White oncologist. Maybe they will be willing to try this lab test as a way of monitoring my response to chemotherapy because the test should be positive even if the tumor cannot be seen on scans.

David

September 25, 2010

Vicodin Withdrawal

I took Vicodin for pain for a couple of weeks each in June and July and then daily between July 29th and last Tuesday. I was taking 12 tablets a day in early August and came down over time to 4 half-tablets on Tuesday. I thought it was time to get off the Vicodin not because I was completely pain free, but because I wanted to get back to a more normal life that included driving the car which I was not supposed to do while on Vicodin. Beginning on Wednesday, I have only taken acetaminophen. I may have come off the Vicodin a little too quickly at the end because Wednesday and Thursday especially, I suffered what appear to be mild withdrawal symptoms. Readers might like to know a little about what it was like.

The most prominent symptom was feeling unwell. When I was taking a couple of Vicodin six times a day, I would experience a mild but pleasurable sense of well being about 35-40 minutes after taking a dose. That feeling decreased with time, partly I imagine because of a developing tolerance to the drug and partly from the decreased dosage, but it certainly helped get me through the pain with a positive outlook. I had just the opposite feeling when I stopped the drug. I suffered from that generalized feeling of being unwell that you get with the flu or other infections, but it was milder—not debilitating, but enough to make me not want to do much of anything. There was also a certain amount of depression thrown in as well. It is now Saturday morning, and that feeling seems to have passed.

I also had a periodic runny nose, and strange sneezing attacks. I may have had a rebound in my levels of pain, but then I didn’t take much acetaminophen either, so it’s hard to know why my pain increased. I am trying to keep my acetaminophen intake down because it can cause liver damage. Except for their addictive nature, opiates in small quantities might be less dangerous than acetaminophen. Opiates slow down the movement of the intestinal tract, so constipation is a problem; consequently, I spent more time that usual in the bathroom the last couple of days and lost several pounds as my bowels cleared out. I imagine this last part goes beyond what you wanted to know, but it makes the accounting complete.

I feel much better today, so it looks like the symptoms were of a really short duration.

As always, thanks for reading the blog. Tomorrow I will begin on a post of a political/economic nature that I hope you will watch for. I don’t think everyone will agree with my view, so I hope it sparks some give and take discussion.

David

September 17, 2010

“The Beat Goes on” (Bono, S. 1967)

The seemingly never ending quest for the next steps in my cancer treatment took us back to Houston this week. On Wednesday I had another chest CT scan, had an appointment with a radiation oncologist, and a PET scan. What had been interesting the first time around (CT, PET, etc.) has lost its allure and become old. On Thursday, we met with the regular oncologist again.

I wrote last week about the difficulty of serving two masters, so it was interesting to hear the oncologist tell me that I was the “captain of the ship,” and the doctors are there to advise me. I didn’t bother to describe how it looks from the patient’s point of view. I may be the Decider to quote President Bush, but weighing the various points of view is not easy. As least I have the advantage of having some grasp of the subject matter and finding it very interesting.

The recommendation from the Scott and White oncologist is to have the chemotherapy. The radiation oncologist at M. D. Anderson seemed to second that opinion but added a round of radiation to follow the chemo. The other oncologist, whose background in internal medicine, suggested having the radiation therapy first and holding off on the chemo until later, if at all. I have attempted to capture his logic below:

  1. Mesothelioma appears to be limited to the right chest cavity.
  2. I have no symptoms or complaints from the cancer itself at this time.
  3. There is little definitive evidence of tumors on the CT or PET scans. The increased glucose update measured by the PET could be caused by inflammation and tissue repair as much as by cancer.
  4. Given the small amount of cancer evident on the scans, one cannot use the PET to determine whether or not chemotherapy is effective. The scans do not have that kind of resolution. 
  5. There is no research to suggest that chemotherapy is more effective when there are few cells than when an observable mass is present.
  6. IMRT is potentially “curative” while chemotherapy is not. Radiation has a good track record of producing local control of cancer following an extrapleural pneumonectomy (which I was going to have); however, the effectiveness is not clear following a pleurectomy (which I did have).
  7. Therefore, start with the radiation because it has the potential to kill cells, then follow up with the chemo when there is enough tissue visible on a CT to determine it’s impact on the cancer.
At this time, I think Jana and I favor this approach although it means I’ll have to spend the work week in Houston for some time, perhaps two months. What’s really interesting is that the radiation oncologist has placed my case on the agenda for review by all the Thoracic Center staff (oncologists, surgeons, radiation oncologists, etc.) for Tuesday. They will put their many heads together and come up with a recommendation that we will hear on Wednesday. We’re really looking forward to what they come up with. Then the captain gets to weigh the evidence and make a decision. One thing is certain, there is no choice that is clearly the best. I don’t suppose it means that it doesn’t matter which decision we make, but it sort of seems that way.

La de da de de, la de da de die.

David

PS Thing are going well. I’m feeling better every day, and the discomfort from the surgery is decreasing. I’m getting out and walking for 40-45 minutes most mornings, and I hope to be off the vicodin in a few days. I'm cooking roast beef in red wine for dinner tomorrow night, and it would have been nice to have a glass of wine with my dinner, but I can't do that until I'm off the vicodin.

September 10, 2010

Cancer Therapy and Matthew 6:24

Having two thoracic oncologists—one at Scott and White and one at M. D. Anderson—reminds me of Matthew 6: 24

No man can serve two masters . . .

Technically, I suppose I have two servants or more correctly, Blue Cross and I have two servants, but the knowledge differences between doctors and patients really puts doctors in a relative position of authority, so I feel like I have two masters.

Jana and I just returned from Houston where we sought a second opinion on my cancer from the doctors at M. D. Anderson Cancer Center (MDACC). To review, my original treatment plan, the extrapleural pneumonectomy (EPP) plus radiation, has a good record of killing the cancer in the affected chest cavity so that it does not reoccur although it can crop up in the other chest cavity or in another location in the body. When the doctors at Scott and White decided not to do the EPP, chemotherapy (which is not curative) became the course they want to follow. My MDACC oncologist on the other hand wants to gather more information before giving up on going for a cure. He wants answers to a couple of questions first:
  • Is it feasible and appropriate to go back into the right chest and remove the cancer that was left in the pericardium?
  • Is it reasonable to use radiation therapy to kill any cancer that was left when the pleura was removed with the lung still in place?
Consequently, we are going back to Houston next week for a CT scan, a PET scan, and a visit with a radiation oncologist. After he has the results of the scans he will talk with a thoracic surgeon and get an opinion from the radiation oncologist. This is where serving two masters comes in. S&W is also scheduling a PET scan to provide a baseline for the chemotherapy, but MDACC will not accept a PET scan from another hospital. Furthermore, I’m sure Blue Cross will not pay for two scans, so I have to get with S&W to see if they will accept the PET from MDACC. Working with the two hospitals may delay further action which gives me second thoughts about getting the second opinion. Trying to coordinate work at two hospitals is no fun.

In other news, I got an email today from an editor of http://pages.videojug.com/ who saw this blog and wanted to recruit me to contribute to their site. I think I’m flattered, but I’m not interested in doing anything more than the occasional entry here.

Thanks for reading our blog.

David

September 3, 2010

Here Comes Chemo!

I met with my new doctor, the oncologist, yesterday and learned that in a few weeks I won’t have any hair. The chemotherapy regimen for mesothelioma uses two drugs, cisplatin and pemetrexed (Alimta) that are given by IV one after the other on the same day. First comes cisplatin (which contains platinum) which takes most of the day to inject. Then the pemetrexed that will take about 20 minutes; however, I only get the drugs every 21 days.

Before they can start, however, I have to undergo a couple of procedures. First I need to have another PET scan (see Matter-Antimatter Annihilation in the Meso-Man from July 4) which will provide a baseline against which to measure changes in my tumor(s). They also will install a port which will provide a permanent line into a vein so no more venipunctures will be necessary. The port which is about the diameter of a quarter will be implanted under the skin of my chest and connected to a vein. When blood is needed for lab tests or a puncture is needed for an IV, they will simply numb the skin above the port and put a needle into the port.

The doctor said that patients usually tolerate the drugs well. I will lose my hair, which I find interesting. I’ve always wondered how I would look if I shaved my head like our friend Jonathan; now I’ll know. I’m going to take pictures of my head before treatment so I can compare the hair that grows back in with my current hair. Will it come back gray from the stress? We’ll have to wait and see.

The drugs can also lower my blood counts, so they gave me a B-12 shot and started me on folic acid to counteract those problems. From what I read the two vitamins also reduce some side effects of the therapy.

Nausea and vomiting is what I fear most from the treatment, but the doctor said that drugs will be given along with the chemotherapy agents to greatly reduce that problem. I was glad to hear that I will not vomit because it’s something I try mightily to prevent. I think it has something to do with the loss of control not to mention the grossness of the aftermath.

Other possible side effects are changes to my sense of taste and hearing as the drugs kill healthy, fast-dividing cells along with the cancer.

After two courses of the treatment (six weeks), I’ll have another PET scan to see what impact the drugs had on my cancer. If the cancer has shrunk or at least not spread, then I’ll get another two rounds of treatment and another PET scan. This will continue until the drugs stop working or the side effects become too bad to continue.

That’s pretty much what I learned. I have requested a second opinion from the M. D. Anderson Cancer Center, but I’ll drop that request if they cannot get me in before Scott & White is ready to begin treatment.

It has been five weeks since the last surgery, and it feels really good to be taking action again.

Jana continues to tolerate her chemotherapy (Gleevec) extremely well.  Apart from an occasional bout of diarrhea, she feels very much better than before--much more energy and a more positive frame of mind.

David

August 21, 2010

Surgery Follow Up

Last Wednesday we had a follow-up appointment with my surgeon. He was pleased with my progress. The big incision and the chest tube incisions all looked good, and the super glue that they use in place of external sutures is flaking off nicely leaving pink scar tissue behind. There was more "junk" (fluid, clotted blood, tumor, or whatever) in my right chest cavity than he had hoped to see, but that does not seem to be a big problem, because he doesn't want to see me again for three months. The junk means that the right lung is not inflating completely, but at least it is working to some degree. It turns out that the sequence of steps in the lung-removal surgery called for cutting the nerve to the diaphragm before they learned they had to change course and remove only the pleura. Consequently, my right diaphragm is not working anyway, so I guess it doesn't make much difference that the right chest cavity has junk in it.


The next step is an appointment with an oncologist so I can begin chemotherapy. Unfortunately, they are currently understaffed in the oncology section, so I won't be able to see a doctor until Sep 2. However, on Monday, I plan to call M. D. Anderson and check on getting a second opinion on where to go from here. I expect both Scott & White and M. D. Anderson to propose the same treatment regimen, but I want to make sure before I begin. From what I can tell by reading articles and research online, I expect to receive two different chemotherapeutic agents--cisplatin and pemetrexed. Together they provide the most impact on the tumor of the available drugs, but they do not provide a cure and only lengthen life expectancy a little.

Predicting life expectancy for mesothelioma is complicated by the small number of cases available for analysis. If it were a more common cancer, then researchers could take into account individual differences in age, gender, general health, the extent of the spread of the cancer, and other important factors in estimating longevity, but about all my surgeon would say was that he would be surprised and pleased to see me in two years. When the famous paleontologist Steven J. Gould was diagnosed with abdominal mesothelioma in his early 40's, he immediately went to the Harvard library to research his life expectancy. He was shocked to learn that the median survival was only about eight months. However, the median does not tell the whole story, and some individuals live much longer than the median. They are said to be in the "long tail" of the life expectancy graph. Following his treatment, Gould wrote a column in Discover magazine that explained how the median can be somewhat misleading statistic. It doesn't tell is how long those who were still alive after eight months lived, and some lived much longer. I've attached a copy of Gould's article under the Other Pages heading on the right. It turn out that Gould lived 20 years after his diagnosis and died of another cancer. I don't know how long I will live, but I do know that I'm going to do whatever I can to stay in the long tail and use my time the best way I can.

At this point, there will not be much to write because much of the mystery of the disease process has been revealed and the upcoming treatment is pretty clear, so I don't expect to be writing much before the chemotherapy begins.  Sarah added a counter to the blog, so I know that a number of people a day check the blog for new entries, and I appreciate that you are interested enough to check in periodically; however, don't expect to find much in the short run.
 
David

August 7, 2010

Back on the Blog

Well, today was the first time I've had the mental energy to write a note on the blog. As you might imagine I am both disappointed that they could not remove my lung and pleased to be recovering from a less serious surgery.


I won't be writing much until after I meet with my surgeon on the 20th (I think). Then I should know more about the follow-on chemotherapy and my life expectancy. Thanks again for your readership and your good wishes. I'm gong to stop now and go walk around the house to speed my recovery.

If you ever have any specific questions, please write to us as cancercouple@gmail.com, and I'll try to answer them.

David

July 30, 2010

After the Surgery

David had the surgery yesterday and he came through it with flying colors. There was only one hitch - they discovered more tumors inside the pericardium (the sack which surrounds the heart). As a result, they did not remove the lung or diaphragm, since they could not remove the pericardial tumors. (There is a very technical explanation for all this, but it was way over my head!) Instead, they shaved off pieces of the lung where there were tumors and they hope to treat the remaining tumors with chemotherapy and radiation. We were both surprised and disappointed, since removing the lung is the best way to get all the cancer out. We hadn’t counted on the tumors near the heart.
David is in ICU today but will probably be moved to a regular room soon. He looks good and is feeling pretty good considering what he went through yesterday. His incision is very large, but is held together with surgical glue, so it really doesn't look too bad.

We appreciate all your good wishes and positive thoughts. They are still needed, so please keep them coming!

Jana

July 28, 2010

Big Day Tomorrow

Tomorrow I have my surgery, so I won't be adding any posts anytime soon; however, Jana will post updates to keep the interested informed. Thank you all for you thoughts, prayers, and other support. It means a lot to know that people are reading the blog and wishing us well.

The operation and recovery are scary, but I have complete confidence in my surgeons, so I expect to go into surgery with a relaxed frame of mind and with the expectation of an uncomplicated recovery.

Thanks again for your well wishes.

July 25, 2010

Cancer Deaths and School Improvement

On July 3rd, I wrote about the perfect storm of suffering and loss that some of my cousins and their families have experienced this spring and summer. My cousin Becky died on Wednesday, and on the way to her funeral, I began thinking about how her doctors had failed. They had gone up against cancer and lost Becky. Where’s the public accountability for the medical profession? Do we have articles in the newspapers condemning doctors and hospitals when patients die of cancer? No. Are doctors paid the same whether their patients get well or not? No. Are hospitals that treat cancer patients forced to close and reopen under new management with new physicians and medical staffs when patient death rates do not drop with each succeeding year? No. Why not?

I think there are several good reason why these things don’t happen. First, we understand that the vast majority of doctors are highly trained professionals who have their patients’ best interests at heart, so they conscientiously do their best for their patients. Unfortunately, cancer is a highly complex set of diseases, and our understanding of it is limited despite years of research and clinical developments. We understand that more research and development must be completed before we understand the myriad complicated relationships that cause some cells to become cancerous.

If we call all of medicine’s knowledge of cancer and the available modes of treatment our profound knowledge of cancer, then Becky’s death and those of millions of others must cause us to conclude that our profound knowledge is seriously lacking. The important point is that everyone acknowledges (doctors, patients, and the community in general) that the medical profession is unable to cure all cancer patients. The goal of defeating cancer remains fixed in the headlights, but the medical profession is still an indeterminate distance from reaching it, and people in general seem to know and accept the fact.

Now consider public education where accountability is so popular with politicians, the media, and social critics. Schools are ranked on test scores, and failure to reach achievement goals result in the closing of schools and their reorganization. The situation is very similar to cancer treatment. In both cases you have dedicated individuals working at the limits of their knowledge to achieve clear goals, e.g., cancer survival, improved student learning, and dropout prevention. Both the medical and the educational professions have failed to meet their goals, but in the case of education, there is much public uproar. Why?

I believe the difference lies in the education community’s inability to acknowledge that its profound knowledge is inadequate to the expectations of political leaders. Everyone knows that cancer it tough to beat, but no one seems to acknowledge that “high levels of learning for all” is impossible with our current knowledge. Until educators are willing to say, “We don’t know how to bring the achievement of low-income students to the level of the better-off peers;” until educators are willing to say, “We don’t know how to keep students in school until they graduate;” until educators and the public are willing to acknowledge that the profound knowledge in education is just as inadequate as the profound knowledge in cancer medicine, teachers and principals will continue to be inappropriately bullied and punished in ways that doctors are not.

David

PS: I realize that this post strayed from our cancer treatments, but I never promised to limit myself to that topic alone.  DD