Saturday, August 05, 2006
Catching up - my disease status
The last six months since my second surgery certainly have not been sedentary months. Between February 2006 and May 9, 2006 my CA 125 rose from 28 to 290. My gyn-oncologist recommended that I move to second line therapy with Doxil. After two rounds of Doxil my CA 125 was still hovering in the 300 range.
During that time, I began to receive once to twice-weekly high-dose vitamin C infusions. Each time I received the Doxil my CA 125 would climb 100 points or so and then with the vitamin C, it would fall about 120 points.
Also, during that time, I was researching my options through the Wellness Community web site, which links cancer patients with public and private clinical research trials. The Wellness Community resource provided me with a large number of clinical trials for which I qualified. One of them was at the Hollings Cancer center at MUSC, in Charleston South Carolina. The study was using the combination of Celebrex and Velcade for solid tumors, including ovarian cancer.
After meeting with the study physician, and discussing it with my local physician, I decided to participate. I am now finished with my first treatment cycle, which consists of treatment two days per week, two weeks in a row out of three. MUSC is approximately 500 miles round-trip from my hometown. For my first treatment, I elected to travel by car. However, Angel Flights has qualified me to be flown to Charleston and back on the same day for future treatments.
This will significantly decrease the amount of time I spend away from home and prevent my medical costs from rising significantly higher than they already are. Along with this travel resource, which is funded by donations from individuals and pilots with planes, I have been able to learn about discount hotel rates which the hospitals have negotiated for cancer patients, as well as volunteers to provide ground transportation from the airport to the hospital for treatment. As a cancer patient, life is more difficult than one can ever imagine, if previously healthy. It is an unbelievable boost to have the resources provided by these caring people, that can help reduce some of the emotional, physical and financial burden for cancer patients.
I learned about Angel Flights from a fellow cancer patient who had benefited from a similar service called Corporate Angel Networks. The Angel Flights are provided by private pilots with small planes who will fly individuals up to 300 miles. The Corporate Angel Network, on the other hand, will transport individuals who have a distance of more than 900 milesto travel to treatment. There is an income qualification, which most individuals will meet if their work and financial status are impacted by cancer treatment.
At this early stage, I have not had a noticeable response to the new treatment. I have had an increase in abdominal distention due to both fluid accumulation and growth of tumor implants in my upper abdomen. There are times when I feel uncomfortable, because of the stretching of my stomach muscle wall, and also because my digestive tract is not functioning optimally. This limits the amount that I can eat at any meal, and sometimes affects my appetite. However, I find that I can still remain active and in fact, that walking and Pilates seems to help ease some of the discomfort.
During my week off from treatment at MUSC, I plan to receive several high-dose vitamin C IV infusions, which seemed to also help reduce some of the distention. It is not clear to me yet the contribution of the high-dose vitamin C to alleviation of disease progression. However, I did note that during the Doxil treatments, my CA125 fell significantly, 120 points, with each round of four to six vitamin C IVs. I will again have an opportunity to assess the effects of vitamin C IV's with several CA 125 levels at the beginning and end of the new round.
So, the saga continues. At times it seems, these days, my life consists primarily of medical treatments or dealing with side effects of medical treatments. While it may not be realistic to hope for a cure - perhaps I should banish that word from my vocabulary - I do hope to reach a stage of stability or remission that would give me a more significant break from treatment. Perhaps my perspective is not objective in this regard, since I hear from people all the time that it is amazing the way in which I continue to go and do. Perhaps it is more that the struggle takes its toll, and more time is spent in convincing myself that I feel well enough to go and do.
The most important self-care tool that I possess is awareness of each moment, and enjoyment and gratitude to God for my life and for that moment - the best use of my time, no matter how long. That awareness is the thing I strive for each day, multiple times throughout the day. It is what Eckhart Tolle describes as "The Power of Now", and when I am able to use that technique, I find it not only eases tension and stress, but also seems to help with physical symptoms and enjoyment of life.
During that time, I began to receive once to twice-weekly high-dose vitamin C infusions. Each time I received the Doxil my CA 125 would climb 100 points or so and then with the vitamin C, it would fall about 120 points.
Also, during that time, I was researching my options through the Wellness Community web site, which links cancer patients with public and private clinical research trials. The Wellness Community resource provided me with a large number of clinical trials for which I qualified. One of them was at the Hollings Cancer center at MUSC, in Charleston South Carolina. The study was using the combination of Celebrex and Velcade for solid tumors, including ovarian cancer.
After meeting with the study physician, and discussing it with my local physician, I decided to participate. I am now finished with my first treatment cycle, which consists of treatment two days per week, two weeks in a row out of three. MUSC is approximately 500 miles round-trip from my hometown. For my first treatment, I elected to travel by car. However, Angel Flights has qualified me to be flown to Charleston and back on the same day for future treatments.
This will significantly decrease the amount of time I spend away from home and prevent my medical costs from rising significantly higher than they already are. Along with this travel resource, which is funded by donations from individuals and pilots with planes, I have been able to learn about discount hotel rates which the hospitals have negotiated for cancer patients, as well as volunteers to provide ground transportation from the airport to the hospital for treatment. As a cancer patient, life is more difficult than one can ever imagine, if previously healthy. It is an unbelievable boost to have the resources provided by these caring people, that can help reduce some of the emotional, physical and financial burden for cancer patients.
I learned about Angel Flights from a fellow cancer patient who had benefited from a similar service called Corporate Angel Networks. The Angel Flights are provided by private pilots with small planes who will fly individuals up to 300 miles. The Corporate Angel Network, on the other hand, will transport individuals who have a distance of more than 900 milesto travel to treatment. There is an income qualification, which most individuals will meet if their work and financial status are impacted by cancer treatment.
At this early stage, I have not had a noticeable response to the new treatment. I have had an increase in abdominal distention due to both fluid accumulation and growth of tumor implants in my upper abdomen. There are times when I feel uncomfortable, because of the stretching of my stomach muscle wall, and also because my digestive tract is not functioning optimally. This limits the amount that I can eat at any meal, and sometimes affects my appetite. However, I find that I can still remain active and in fact, that walking and Pilates seems to help ease some of the discomfort.
During my week off from treatment at MUSC, I plan to receive several high-dose vitamin C IV infusions, which seemed to also help reduce some of the distention. It is not clear to me yet the contribution of the high-dose vitamin C to alleviation of disease progression. However, I did note that during the Doxil treatments, my CA125 fell significantly, 120 points, with each round of four to six vitamin C IVs. I will again have an opportunity to assess the effects of vitamin C IV's with several CA 125 levels at the beginning and end of the new round.
So, the saga continues. At times it seems, these days, my life consists primarily of medical treatments or dealing with side effects of medical treatments. While it may not be realistic to hope for a cure - perhaps I should banish that word from my vocabulary - I do hope to reach a stage of stability or remission that would give me a more significant break from treatment. Perhaps my perspective is not objective in this regard, since I hear from people all the time that it is amazing the way in which I continue to go and do. Perhaps it is more that the struggle takes its toll, and more time is spent in convincing myself that I feel well enough to go and do.
The most important self-care tool that I possess is awareness of each moment, and enjoyment and gratitude to God for my life and for that moment - the best use of my time, no matter how long. That awareness is the thing I strive for each day, multiple times throughout the day. It is what Eckhart Tolle describes as "The Power of Now", and when I am able to use that technique, I find it not only eases tension and stress, but also seems to help with physical symptoms and enjoyment of life.
