Asbestos Facts

Last Friday was Mesothelioma Awareness Day, and I have been asked by the Mesothelioma Cancer Alliance ( www.mesothelioma.com) to share some facts about asbestos, the cause of mesothelioma.  I can's say that I support a complete ban of asbestos, but its use should be limited to those that are safe and for which there is no better product. Interestingly, my oncologist says that because there is no heavy industry in Denver that uses asbestos, teachers are the occupational group with the highest incidence of mesothelioma here. 

September CT Results and Actions

I have been on a chemo break for four months now.  Yesterday I had a CT scan, and today we saw my oncologist.  The scan showed essentially no growth in one area and a small amount in another.  Dr. Camidge recommended not returning to chemo now, and I readily agreed.  We’ll wait three months between CT scans this time instead of the usual two.

That’s the good news for today, but we had a good discussion of the course of my disease, and what follows is a summary for any who might be interested.  No one was expecting mesothelioma in May, 2010 when the surgeon went in to do a thoracoscopic procedure to end the pleural infusion in my right lung.  When they found cancer, I went through a battery of tests to determine if I was a candidate for an extrapleural pneumonectomy—the removal of my lung—which had the potential of providing a cure.  I qualified, and when they went in, they found cancer in the sack around the heart and decided not to remove the lung.  Instead, they removed the lining of the chest cavity, the pleura, and removed as much of the cancer as they could.  One of my surgeons was very experienced with mesothelioma and must have done a very good job of getting out as much of the cancer as possible because I am still alive three years later.

It seems that my tumors are slow growing, not what I had expected from what I had read about the aggressive nature of mesothelioma.  It also appears that the chemo I’ve had has been effective in keeping it in check, but the researcher in me wonders how quickly it would have grown without the chemo given the slow growth during my chemo breaks.  In summary, it appears that relatively early detection, my generally good health, the skill of the surgeons, and the chemotherapy have combined to keep my cancer from growing too rapidly.  When I was diagnosed it was my goal to be in the long tail of the mortality curve (see the article by Stephen Jay Gould to the right), and so far, so good.

I also think psychological stress has played a roll in my cancers.  As far as I can tell there is no clear relationship between stress and cancer, but both of my cancers were detected in times when I was under greater-than-average stress.  My life now is virtually stress free, and our interactions with our daughters and their families and our friends are positive factors in our lives, so I think my body is better able to deal with the cancer and keep the spread low, especially since there has been no evidence on metastasis.  Thanks to all of you who read this blog for your support as well.

Good Cancer News

Jana and I both had visits with our oncologists today.  I have been on a two-month chemo break and had a CT yesterday to see what changes have occurred.  My scan was essentially unchanged from two months ago, so my doctor is happy with letting me extend my chemo break for another two months.

Jana has had periodic (usually every three months) blood tests for cells with the BRC-ABL mutation, the mutation that causes chronic myelogenous leukemia.  The number of cancerous cells dropped rapidly after she started on Gleevec three years ago and has remained at a low level since then.  Recently the concentration has been about 0.001% range.  This time, however, no cells were detected at all.  It doesn't mean that she's cured, but it does raise the possibility of going off of Gleevec if the cells are still undetectable in three months.  Research has shown that patients can go off of Gleevec for some time with out a problem.  If the cells return, then resuming Gleevec is generally effective in reducing the number again, and if it fails there are two other (apparently more effective) drugs that can be used.

All around, we were very happy with today's appointments.

100 Laser Shots to the Eye

I have just about all of the degenerative conditions of the pre-elderly, including glaucoma.  Yesterday I underwent a laser treatment for glaucoma that some of you may find interesting.

First a little background.  Glaucoma is a condition in which the internal pressure of the eye is too high.   Normally, the aqueous humor that fills the spaces in front of and behind the iris drains from the eye through a mesh-like structure called the trabecular network at the same rate it is produced.  With glaucoma, however, the exchange of fluid is out of balance and the internal pressure rises which damages the optic nerve if untreated.  My glaucoma is controlled by the use of two kinds of eye drops, but a relatively new laser treatment has been developed that has the potential to reduce or eliminate the need for drops.

The procedure is called Selective Laser Trabeculoplasty (SLT).  An earlier procedure used an argon laser to blast holes in the trabecular network to allow the fluid to drain, but the destruction it caused limited it to a single use.  The new technique is called “selective” because it only affects some cells in the network.  This laser is tuned so that only cells containing granules of melanin, the pigment that makes skin brown, absorb its energy.  As I understand it, the laser heats the granules and either kills the cells directly or injures them enough that they initiate programmed cell death and self-destruct.  With cell death, substances are released that activate aspects of the immune system that remodel the trabecular network and increase the outflow of aqueous humor.  The procedure can be repeated if necessary.

What is it like to undergo SLT?  First drops are used to constrict the pupil in the eye to be treated.  The drops can cause a headache, but that is generally the only pain associated with the procedure.  When the eye is ready, the patient sits in a chair opposite a chin and forehead rest similar to the ones used for a slit-lamp eye examination.  The doctor shines a low-power red targeting laser into the eye and aims it at the edge of the cornea.  When the beam is in the right position, the doctor fires the laser, and the patient sees a flash of green light.  The doctor moves the targeting beam to another location and fires again for a total of about 100 short that cover the circumference of the cornea.  I found the treatment to be completely painless, and it took perhaps five minutes to make the 100 shots.  I have to use anti-inflammatory eye drops four times a day for four days and go back in two weeks to see if the treatment was a success.   If so, then the other eye will be treated.

I was attracted to SLT because it has the potential to make structural changes to the trabecular network that provide at least a temporary “cure” for the disease.

School's Out For the Summer! -- Reprise

Today I got the results of my latest CT scan from my oncologist today.  My tumors remain stable.  In fact, they have not changed meaningfully since I started my latest round of pemetrexed chemotherapy last August.  Now, 12 infusions later, I got down on my knees and begged my doctor to let me take a chemo break.  Pulling out his whip, he yelled, “No and get back in that chair.”

Not really.  He thought it would be fine to take a break and come back for a CT in mid-July to see how things stand.  He is an outstanding doctor and an outstanding person.  It is a great pleasure to have him as my oncologist, and I’m especially pleased that he tolerates my questions and responds in ways that respect my intelligence.

Once again, as Alice Cooper sang,  “School’s out for the summer!”

Checking In

A couple of people have noted that I haven’t added a new post for a while, and they correctly assume it means that all is well.  Jana’s CML continues to respond to Gleevec, and my tumors have remained stable or perhaps even shrunk a little.

As of yesterday, I’ve had 12 pemetrexed infusions, one every three weeks, since late August.  I’ve had it so many times that I can almost predict my side effects to the hour they begin.  As I’ve noted before, the treatment is nothing like the cisplatin and pemetrexed regimen I had in Temple, but it’s getting old.  I feel the need for a break to let my body recover some strength, so I’m going to discuss it with my oncologist in three weeks.  I had a four month break last summer with no apparent problems, so I hope it works out a well this year.

I really didn’t have anything to say in this post, but I thought I ought to add a note.  Thanks for checking Cancer Couple from time to time.

Latest CT Scan Results

I generally get a CT scan after the third in a series of infusions. After receiving seven infusions beginning in December 2011, I had a four month break over the summer, and my last infusion (before the one I got today) was the sixth since I restarted chemotherapy in late August, so I had a CT scan last Friday.

I haven't seen a copy of the radiologist's report yet, but my oncologist said that the trend toward smaller tumor size continued. Given my background in educational assessment, I am leery of the reliability of small changes from CT to CT given the many sources of error inherent in the CT process, but I am encouraged by two successive CTs showing positive results. At the very worst, my mesothelioma is stable.

Consequently, I had another infusion this afternoon. This will be an interesting one to experience because my last infusion produced almost no sense of unwellness, and almost no fatigue which was very unusual. I'm not sure what happened last time, but it may be the result of my taking my anti-nausea medicine for only two days instead of my typical habit of taking it for three or four days. The prescription says to take the medicine as needed. How do you interpret that? Having a great dislike of vomiting, I had decided long ago to take it regularly until I was sure I was not going to become nauseated. However, last round I went online and looked up information on the drug, ondansetron, and found that it was only given for a short duration in the studies that demonstrated its effectiveness. I also learned that it slows down the movement of food through the body and promotes constipation, so I decided to take it only on the day of the infusion and on the next day. The result was that I had no nausea, and I believe I have been taking it for too many days in the past. Whether stopping the drug contributed to the relief of my sense of abdominal unwellness and chemo fatigue, is uncertain, but I'm not going to take it after tomorrow and see how I feel this time.

As I'm sure I've reported before, my chemo drug, pemetrexed, is reasonably well tolerated, and I want to continue taking it (with perhaps another summer break) as long as my cancer remains indolent.

Thanksgiving 2012

Thanksgiving Day is the day set aside to attend to the things we appreciate in our lives; however, normally for me it is just a day to get together with family and/or friends, to visit, and to share a special meal. This Thanksgiving meal was different, however, and made me really appreciate the time with family and friends.

We were joined at our table this year by a woman and her daughter and son-in-law who lost their husband/dad to malignant melanoma last April. When I was first diagnosed with mesothelioma in 2010, I reviewed the survival data and thought I had no more than a year to live. Subsequently, I believed that I probably had a rolling six-month life expectancy because the doctors would not give an estimate of how long I might live. Over the intervening two and a half years I have come to expect a longer life span and have begun to take it for granted; however, having these guests at our table made especially appreciative of the meal because their husband/father was unable to be with his family for the day, and he will never know his grandson who will be born next May.

Reflecting on these sad facts made me appreciate my doctors at Scott and White and the University of Colorado hospital—Doctors Smythe and Reznik who did a tremendous job of removing my original tumors, Dr. Gowan who got me started on chemotherapy, and Doctors Camidge and Weickhardt who have stayed on top of my case for the past year and a half in Denver. I also greatly appreciate the many highly professional, compassionate, upbeat, and kind nurses at both hospitals who have given me tremendous respect for these often undervalued caregivers. In fact, everyone I’ve met at these two hospitals deserves praise for their competence and professionalism.

Obviously, I am extremely thankful for he support of Jana, our daughters and their families, and my mother-in-law. But I’m perhaps most thankful for the fact that the girls have given us grandchildren. Here’s why. There is no real difference between the mind and the body, but it is a useful fiction to think as if there is. I believe the mental stress of my latter years in DoDDS and my retirement played a role in the development of my mesothelioma. It might have eventually developed, but I believe stress probably facilitated the transformation of those asbestos-tainted cells into mesothelioma.

Jana’s and my diagnoses and my subsequent treatment have certainly been stressful and might have hastened the further development of my disease, but the stresses may not be as great as one might expect. I have never viewed my disease as a tragedy, a great disappointment, yes, but not a tragedy. The reason is that by that point in my life I had accomplished what I saw as the major responsibilities of a husband and father—our daughters were grown and had a good education, they were married to outstanding young men, and Jana and I had sufficient financial resources to expect to live a reasonably comfortable life for many years. So while it is a tragedy when a child or young adult has an incurable cancer, it is not so stressful when ones life is in good order and nearing an end anyway.

So while our cancers have been stressful, the conditions of our lives have offset that stress at least so some degree and, I believe, contributed to a longer life span than I had expected. However, there is one other factor that I believe has contributed even more to my life span, and that is grandchildren. The stress-reducing peace and joy my grandchildren bring to my life must be therapeutic. They provide an enhanced motivation to live, so whatever good the doctors and nurses have done for my body, I believe Jamie and Madeline have done equally as much or more good for my health. At some time in the indeterminate future, I will slip away, but until that time, I believe my love for them and the joy I have in seeing them will work to prolong my life. For that I am extremely grateful and at the same time saddened that our guests’ husband/father did not get to know his future grandchildren and benefit from the support they unwittingly provide.

Out with the Old and in with the New

It’s been some time since I last wrote an entry because things have become rather routine and predictable.  Today, however, that changed a little.  Before I had my first round of chemo two years ago this month, I had a port installed on the left side of my chest.  The port is a small device with a tube that runs to a major vein.  It has a rubber top, and a special needle is used to penetrate the overlying skin and penetrate the top of the port.  Then blood can be withdrawn and other fluids such a chemo drugs can be injected into the vein through the port.  Two infusions ago, my old port did not work properly.  Flushes and/or chemo drugs would flow into the vein, but blood could not be drawn.  The most likely reason was that a fibrin sheath had formed over the tip of the tubing inside the vein.  The sheath acted like a one-way valve that opened when fluid was injected, but closed under suction.  Then during the last infusion two weeks ago, there was significant resistance to the injection of fluids, so they had to infuse my chemo through an IV in my arm.

 
Consequently, I had to go in today and have my old port removed and a new one installed.  It all went very smoothly, and it was interesting because I was awake but sedated and very relaxed while the nurse practitioner performed the procedures.  I’m glad to have my new port because it is a power port, which allows contrast medium to be injected when I have a CT scan.  My old port was small and had not been approved for the injection of the CT contrast.  Given that I have a CT scan every eight or nine weeks, the new port will save me from having future IVs.  I’m a little sore at the two incision sites, but Tylenol helps.  My new port will get its first test on Monday when I go in for my next CT.  Wednesday I’ll learn if my tumors are behaving themselves or not.  If not we’ll have to come up with a new game plan; otherwise, I’ll go into another three-round cycle of pemetrexed, which will take me into the new year.

David

Back in the Saddle Again

Well, I’m back in the saddle again,
A new round of chemo begins.

Had a CT on Monday and saw the oncologists today. Enough growth has occurred in a couple of areas that a new series of chemo with pemetrexed is needed. The previous series of infusions lasted for about four months, and then I had the four month break. I’ll go through three rounds of chemo which last three week each, and then I’ll have a scan, and we’ll see where things stand. They said the typical pattern is to continue with the pemetrexed indefinitely, but there is no good clinical research to show that that approach is better than my pattern of getting chemo, having a break, and starting again. If growth is stabilized after a few months, then maybe I’ll have another break; we’ll just have to wait and see. As I’ve noted before, pemetrexed is not very debilitating. Basically, I feel a little unwell for about a week, so I’ll be able to continue as long as it is needed.

David