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 28, 2010
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
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:
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.
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:
- Mesothelioma appears to be limited to the right chest cavity.
- I have no symptoms or complaints from the cancer itself at this time.
- 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.
- 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.
- There is no research to suggest that chemotherapy is more effective when there are few cells than when an observable mass is present.
- 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).
- 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.
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:
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
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?
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
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
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