Chemo Update

It is chemo plus two days now. The first day after chemo started at 2:30 am when I woke up and stayed up until 4:30 or 5:00. I think I felt good on the day of the chemo because of the steroids they gave me to help with nausea, and their stimulating effect woke me up. I wasn’t bothered by being awake in the middle of the night because I was fully awake and read the news and played Spider solitaire happily, but about 4:30 I thought I’d better go to sleep, so I took a Benadryl as the nurse had suggested.

I have had absolutely no nausea even though cisplatin is known to be a powerful nausea stimulator. The anti-nausea drugs work wonderfully, so if you ever face chemotherapy know that nausea is a side effect of the past. I do have the hiccups most of my waking hours, however. I went online and found that the steroids seem to cause the hiccups, and the hiccups should abate when I stop taking the steroids on Wednesday, or maybe even when the dosage is reduced tomorrow. One possible factor may be imbalance in my electrolytes, and I need more sodium, so I’m going to eat a bowl of canned soup for lunch which will provide a lot of salt.

I seem to be benefiting from a positive side effect that I did not anticipate. The pain that is probably caused by nerve damage from my surgery is much diminished. It’s good to have a positive side effect.

David

I Feel Good!

I wanted to title this entry as follows, but the title can only be one line long.

I Feel Good!
NaNa Na NaNa NaNa
Didn’t Think That I Would Now!

I had my first round of chemo today—a liter of saline, 500 cc’s of Alimta, a thirty minute rest, a liter of Cisplatin, and another liter of saline. It took about five hours. They also gave me a B12 shot, an anti-nausea drug in my IV, an anti-nausea drug by mouth, and a steroid. I have no side effects of the chemo at this time (6 pm), but may have them later. The B-12 and the steroid may have a lot to do with my feeling good.

It all went smoothly, and my port worked as it should. I just sat in a recliner under a blanket (it’s cold in there plus cool liquids were constantly going into my bloodstream) and read. I took a sandwich and apple for lunch and wheeled my IV stand over to the kitchen area and got some graham crackers later on. The nurses were top notch—knowledgeable, helpful, and had a great attitude.

We learned from the nurse who provided the chemo education that another mesothelioma patient, who flies down from Michigan for his treatment, has a blog. Looking forward to reading it.

David

Meso-man Gets a Port

I went in today to have a venous port installed. That sounds like something that would happen when you take your car to the garage. A venous port is a small bulb-like receptacle that is inserted in a pouch under the skin of the chest. It is connected to a catheter that runs to a major vein so fluids can be injected or blood withdrawn from the vein without having to place an IV in the hand or elbow. The chemotherapeutic agents I will receive are very irritating to the skin or tissue if they come in direct contact with them, so using the port to drip the drugs into the body reduces the risk of complications associated with that contact. It also means that my vein will be spared the damage caused by regular needle punctures.

The port is inserted under a low-level sedation. I can remember at least part of the procedure (near the end), but I’m not sure I was very alert for the whole time. The process began with the usual interview by the nurse in which she asked the usual questions about any allergies to medicines, the presence of a pacemaker, the drugs I am taking, etc. The doctor explained the procedure and obtained consent, then another doctor, who I imagine is a resident, came by to introduce himself.

Then the nurse wheeled me on a gurney into the operating room where a tech was waiting. The room was impressive with seven flat panel displays and other equipment. It took quite some time to get me ready (shaving and sterilizing my chest, putting on a mask and hairnet, putting oxygen nosebuds in place, taking my blood pressure, etc.) and position all of the equipment. I wonder what the two little tubes that go into the nose from an oxygen line are called? We use earbuds to listen to music, so maybe we breathe oxygen through nosebuds.

The insertion of the catheter into the vein was conducted under ultrasound and the finished product was x-rayed. I don’t remember the ultrasound part of the procedure, so I suppose I was at a deeper level of sedation at that time, but I did see the x-ray on one of the displays at the end of the procedure. I was conscious enough during the last part of the procedure to listen to the doctors reposition the catheter and attach it to the port and finish up.

I can’t see the location of the port now because of the dressing that covers it, but that will be removed tomorrow when I get my first chemo. I have only a little discomfort at the port site, and I have not taken any Tylenol yet. I have to minimize lifting with my left hand (the port’s on the left side) for some time, so I get a guilt-free pass on working in the yard for a while.

When this disease process began, I found the testing and surgery interesting, and I looked forward to what I would learn. Now, however, it is not so interesting. I have grown tired of being poked and cut on. I still like learning about the procedures, but just not as much. As we were sitting in the prep area waiting for me to be wheeled into the operating room, Jana said that she was more anxious than she expected to be, so I guess we are becoming more sensitized than desensitized to medical procedures. Chemo begins tomorrow, and I’ll write a description of that experience when I feel up to it.

David

PS A picture of my port can  be found on page 12 of this link http://bardaccess.com/assets/pdfs/brochures/bro-port-family.pdf

Two Doctor Visits

Jana and I each had appointments with our oncologists this week. Her visit yesterday went very well, and her white blood count is still normal. We would have been shocked if it had been otherwise because she feels so good, but it was reassuring to get positive results. The doctor ordered the blood test that determines what percentage of her white blood cells have the translocation that causes her leukemia, and we’ll get the results next week. The goal is to get the percentage to essentially zero.

Jana’s doctor has a sort of ebullient personality, and he told us how he likes to read Louis L’Amour and Daniel Quinn to relax. Then he loaned us two Louis L’Amour books to take our minds off of cancer. He also told his nurse that we were spies who had worked overseas for many years. I explained to her briefly what we really did. He closed the appointment by giving us each a hug (plus giving Jana a peck on the cheek).

His personality is not what I would have expected from a doctor who is the director of the Cancer Center, the Division of Hematology/Oncology, and the Cancer Research Institute and who has his BA, MA, and MD from Harvard, did his internship at Yale, and his residency and a fellowship at Stanford. A new drug that he has developed is being tried at M D Anderson. I was impressed by his mental energy and playfulness. I wonder if his playfulness is related to his success as a researcher?

I saw my oncologist today, and we decided to go forward with chemotherapy. His argument was that because we know that I have cancer in the pericardium (the sack around the heart) it would be better to begin treatment before the cancer can cause an effusion or other problem that would complicate my treatment. From what I can tell, only about half of mesothelioma patients respond to the chemotherapy, but since I hope to be in the “long tail” of the survival curve, I am ready to proceed. I’ll have a port installed as soon as it can be scheduled next week, and then I’ll have Chemo School and begin the chemotherapy the next day. I’ve got to get some pictures made of my head with hair in case I lose it. I’m curious about how my hair might be different when it grows back.

Watch this spot for a description of my chemo next week or the week after depending on when I can begin.

David

Surgery Plus Ten Weeks

It’s been 10 weeks since my big operation. I thought I’d be feeling better than I am at this point. Yesterday, I was more physically active than I have been since the surgery. I walked about two miles first thing in the morning. Then I mowed the front and side yards. Self-propelled lawnmowers are great. Then after lunch and a rest, I edged the back yard with a weed eater and used electric clippers to trim a bed of Carolina jasmine that has taken over a flower bed around one of the pecan trees.

Walking does not bother me particularly, and I have been doing it pretty regularly, but after mowing I had to lie down before and after lunch. Using my upper body, especially my right arm, tires out my back pretty quickly, and I get some dull pain (in addition to the pain of fatigue) up high in my back about where I think they removed the rib. Sitting up in bed, leaning back on a stack of pillows feels really good then. I noticed in the afternoon that stooping and extending the trimmer in front of me as I cut the jasmine not only made my back tired, but made me short of breath sooner than I would have expected.

I have another kind of pain that is pretty much chronic. It is in the front where I have a bulge that is centered on the bottom of my right rib cage. The bulge is a continuation of the bulge that follows the line of incision from high on my back down and around to my side. The pain there gets “crampy” at times and is interspersed with an occasional sharp pain. It seems worse after sitting at the table and eating, so maybe it has to do with my full stomach pushing up on my nonfunctional diaphragm on the right side and stimulating the area damaged by the surgery. This pain in the front is the more troublesome of the two. The back pain can be relieved by resting my back, but the front pain can only be relieved by taking Tylenol, and then not completely. Fortunately, it is rarely very discomforting, even if it is chronic.

Our daughter, Laura, and her husband, Hunter, will arrive tomorrow night to help us prepare for and hold our garage/yard sale on Sunday and Monday. We are so grateful for the help, especially since I’ll probably have to come in and rest my back periodically.

I’ve had a call in to Scott & White this week asking for an appointment with my oncologist; however, I have not heard anything. I’ll have to call them in the morning to see what happened. Jana has a blood test on Tuesday, and she will see her doctor on Wednesday for the results. From how she’s been feeling, we expect the result to be very good.

David

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

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 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.

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

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