Yesterday
marked the sixth anniversary of my diagnosis of mesothelioma and is less than
two weeks short of Jana's diagnosis of chronic myelogenous leukemia (CML). I thought I'd take the occasion to post a
brief status report.
Readers
will recall that Jana went on the miracle drug Gleevec upon diagnosis and
steadily improved. It has been over a
year now since she stopped taking Gleevec and as of her last blood test this week
her cancer cells are still undetectable.
They have found no evidence of the disease for more than 26 months. Does that say cure to you? I don't think the doctors would ever use the
word, but it seems like a cure to us.
My
mesothelioma will never be cured, but I have lived much longer than I ever
expected. About half of all people with
mesothelioma die of the disease within the first year. Only a small percentage live as long as I
have.
Why
have I lived so long? Late last year, I
thought I might have found part of the answer when I read about a gene (BAP-1)
that predisposes those who carry it to mesothelioma, and those who get the
disease seem to live six times as long as those without the gene. In response, I asked to be tested for the
gene. The results came back about a
month later, and I learned that I do not carry a mutated form of the gene. There went a possible contributor to my
longevity; however, I was glad to learn that my daughters and grandchildren
will not have a chance of getting that gene from me. That puts me back to square one in determining
why I am still alive. I think I've
written about this before, but to summarize:
1. I probably had minimal exposure to asbestos.
2. My mesothelioma was caught at an early stage
because it caused a pleural effusion.
3. The removal of the pleura (lining of the lung
cavity where mesothelioma arises) was done by a very experienced doctor who
performs about 10% of all such surgeries in the country.
4. The thorough removal of the pleura also
removed much or most of the asbestos in that lung making the development of new
tumors less likely. I haven't read
anything to support this hypothesis, but it make sense to me.
5. I started chemotherapy right away even though
that was not the recommendation I received when I got a second opinion at MD
Anderson.
6. I never panicked about the diagnosis but set
a goal of being in the long tail of the survival curve. (See the article by
Stephen Jay Gould at the top page of this blog.) While I have no strong scientific evidence to
back it up, I think my expectation of a long survival helped my body slow down
the development of the disease.
7. My chemo breaks allowed my body to recover
from the effects of chemotherapy somewhat and made a contribution to my ability
to contain the disease. Again, I have no
scientific evidence to back this up, but I have a strong belief that stress
alters the body's defenses, so breaks allow the body to recharge itself.
Since
early March I have completed four rounds on a new chemotherapy drug,
gemcitabine. It's new to me, but not a
new drug. Each three-week round consists
of an infusion on days 1 and 8 with a week off and a new round beginning on day
29. Gemcitabine or Gemzar is perhaps a
little better tolerated than pemetrexed, but causes more days of fatigue than
pemetrexed. I had a CT scan today and
have an appointment to begin the fifth round on Wednesday. At this time, I am not sure whether or not I
will have the infusion.
There
is an open question in my mind about the degree to which my chemotherapy caused
or strongly contributed to my congestive heart failure. I've had 6 rounds of cisplatin and pemetrexed,
35 rounds of pemetrexed alone, and now four rounds of gemcitabine for a total
of 49 times in the chemo chair. It seems
to me that all that poison coursing through my body is bound to have affected
all parts of the body to some degree. I
know for certain that my red blood cell count is low and close to the level of
anemia and is bound to have caused some of my relatively chronic fatigue.
