October 26, 2007 marks my first anniversary as a survivor of cancer and Michael’s as a surviving caregiver. Back then, the doctors were counting my remaining days in weeks and months, chary of going out on a limb with a prognosis of as much as a year’s survival. The statistic the medical community uses to measure a successful outcome for this illness is the five-year mark without recurrence. I am not yet in remission, and I continue to conduct a vigorous daily campaign to rid myself of this evil companion.
The signs of improvement are solid, particularly in the underlying strength of my health. A recent brief spell of "normalcy" reinforced this perception. While crossing an Amtrak waiting room on our last return trip from Charleston, I suddenly became aware of myself in full stride, fueled by energy and bounce, glowing with health, propelled forward rather than dragging myself along. What a thrill to experience my former energetic self. Instantly my eyes smarted with tears of wonder and gratitude. This is cause to celebrate!
And so we are! We are piggy-backing onto our next trip to Charleston, leaving directly from the Hollings Cancer Center for the warm sun and cool mountain breezes of Puerto Rico. The yoga retreat has minimal amenities: no room telephones or TV, no bathtubs (shower only). A pool and stupendous mountain views soothe the body and spirit. In these inspiring surroundings with few distractions, we hope to reduce stress, divest ourselves of mental baggage, and free up our spirits to continue the campaign to eliminate this illness from dominating our lives.
You have made it possible. Our everlasting thanks for being with us on this journey.
Copyright 2007
Friday, October 12, 2007
Saturday, October 6, 2007
Near Normal
We are intensely grateful to be home for a stretch after the initial flurry of appointments with the staff of the experimental drug clinical study in Charleston. They seem satisfied with the way things are progressing, meaning that we show up in the doctor’s office on time per schedule with their questionnaires about mood, pain levels, and bowel movements duly completed, my veins continue to stand up to the blood draws, and the ECGs reflect continuing good heart health.
I am experiencing some medication side effects cited in the study materials including mild nausea and fatigue plus some that are less common such as sensitivity to sunlight and a rash appearing on forearms, neck and face.
I am tempted to conclude that the presence of these effects means I am getting the drug, not a placebo. The frustration of this situation is that the effects can also be attributed to symptoms of the illness.
And just to be fair, a third possibility exists: that the side effects are merely confirmation of an even more common, ultimately deadly condition called "aging." I cringe to accept the inevitability of succumbing to such a malady. Small comfort to know that my mind is still stuck at age 27!
We met with our oncologist on 10-3, who gave us the most exciting news since the October 2006 diagnosis: every lab value is in the normal range! That means my liver is functioning as normal, my hemoglobin is carrying adequate oxygen to keep me alert and my kidneys are doing their job.
The cancer markers, however, are up: Calcitonin is up 3% and CEA up 75% vs the previous readings on 7-12-07. The oncologist points out that dying cancer cells can also raise the CEA, which is encouraging in that the trial drug may be responsible, not growth of the cancer itself.
In summary, my underlying health is becoming more stable; the strength will serve me well in rallying my immune system to fight this illness.
My apologies for a long absence from the blog. I pledge to do better in the future. Thank you for standing by me so loyally. I’m sure your support and caring concern has produced the good results I’m feeling today.
Copyright 2007
Posted: October 6, 2007
I am experiencing some medication side effects cited in the study materials including mild nausea and fatigue plus some that are less common such as sensitivity to sunlight and a rash appearing on forearms, neck and face.
I am tempted to conclude that the presence of these effects means I am getting the drug, not a placebo. The frustration of this situation is that the effects can also be attributed to symptoms of the illness.
And just to be fair, a third possibility exists: that the side effects are merely confirmation of an even more common, ultimately deadly condition called "aging." I cringe to accept the inevitability of succumbing to such a malady. Small comfort to know that my mind is still stuck at age 27!
We met with our oncologist on 10-3, who gave us the most exciting news since the October 2006 diagnosis: every lab value is in the normal range! That means my liver is functioning as normal, my hemoglobin is carrying adequate oxygen to keep me alert and my kidneys are doing their job.
The cancer markers, however, are up: Calcitonin is up 3% and CEA up 75% vs the previous readings on 7-12-07. The oncologist points out that dying cancer cells can also raise the CEA, which is encouraging in that the trial drug may be responsible, not growth of the cancer itself.
In summary, my underlying health is becoming more stable; the strength will serve me well in rallying my immune system to fight this illness.
My apologies for a long absence from the blog. I pledge to do better in the future. Thank you for standing by me so loyally. I’m sure your support and caring concern has produced the good results I’m feeling today.
Copyright 2007
Posted: October 6, 2007
Sunday, August 26, 2007
Forever Charleston
We can't seem to get out of Charleston!
In quick succession, a number of unexpected events have extended our stay. After the trip to the Emergency Room (see previous posting of 8-16-07), we learned of a shipping glitch that delayed delivery of the trial medications and materials. This required us to postpone the start of the clinical study four days to 8/21/07. Like cascading dominos, this adjustment affected the timing of the follow-up appointments for the study, making a return home inbetween both uneconomical and stressful ... a 1200 mile round trip just to have 1-1/2 days at home. We extended our stay to the pleasure of our motel management.
It is just as well we stayed because I experienced some frightening spontaneous bleeding Saturday 8/18 that brought us to the Emergency Room again. A sequence of three blood tests over as many days revealed a loss of two full points of hemoglobin to a new low (for me) of 7.5, well under the acceptable "normal" range. In view of this trend and the equivocal status of the Coumadin/Lovenox levels in my blood, the ER attending physician mandated hospitalization and a transfusion of two units of blood which took place during the early hours of Sunday morning. They kept me two more nights, reconfiguring my medication schedules and feeding me surprisingly well-prepared tasty meals.
During this time, an Ultra Sound defined more clearly the clot in my left femoral vein as recently formed, probably within the past two months. We are hoping this means an improved chance of resolving the clot and reducing my risk of further complications.
By now I am well stabilized on the Coumadin upramp, I am fully integrated into the clinical study for Zactima, pain is manageable again, and my arms are clearing of the considerable bruising occasioned by approximately 40 vein sticks during the two weeks plus of our stay in Charleston. As a bonus, our Honda Accord offered us the opportunity to replace a worn out alternator whining for attention before the 600 mile trip home.
Tuesday we turn North for home with thanks to two MUSC medical teams notable for their uplifting spirit as well as their gracious professsional demeanor.
Copyright 2007
In quick succession, a number of unexpected events have extended our stay. After the trip to the Emergency Room (see previous posting of 8-16-07), we learned of a shipping glitch that delayed delivery of the trial medications and materials. This required us to postpone the start of the clinical study four days to 8/21/07. Like cascading dominos, this adjustment affected the timing of the follow-up appointments for the study, making a return home inbetween both uneconomical and stressful ... a 1200 mile round trip just to have 1-1/2 days at home. We extended our stay to the pleasure of our motel management.
It is just as well we stayed because I experienced some frightening spontaneous bleeding Saturday 8/18 that brought us to the Emergency Room again. A sequence of three blood tests over as many days revealed a loss of two full points of hemoglobin to a new low (for me) of 7.5, well under the acceptable "normal" range. In view of this trend and the equivocal status of the Coumadin/Lovenox levels in my blood, the ER attending physician mandated hospitalization and a transfusion of two units of blood which took place during the early hours of Sunday morning. They kept me two more nights, reconfiguring my medication schedules and feeding me surprisingly well-prepared tasty meals.
During this time, an Ultra Sound defined more clearly the clot in my left femoral vein as recently formed, probably within the past two months. We are hoping this means an improved chance of resolving the clot and reducing my risk of further complications.
By now I am well stabilized on the Coumadin upramp, I am fully integrated into the clinical study for Zactima, pain is manageable again, and my arms are clearing of the considerable bruising occasioned by approximately 40 vein sticks during the two weeks plus of our stay in Charleston. As a bonus, our Honda Accord offered us the opportunity to replace a worn out alternator whining for attention before the 600 mile trip home.
Tuesday we turn North for home with thanks to two MUSC medical teams notable for their uplifting spirit as well as their gracious professsional demeanor.
Copyright 2007
Thursday, August 16, 2007
ER Redux
Yesterday, a neck to knee CT scan established the baseline for tumor status in the clinical trial for Zactima. The CT also delivered an unwelcome surprise showing a Deep Vein Thrombosis (DVT) in my left femoral vein. The medical doctor from the study team organized the response to this discovery paving the way through an affiliated ER.
I haven't seen the radiologist's report so I have no details about the clot, although the ER attending physician explained that DVT is not an uncommon occurence as a sidebar to cancer. In lay terms he explained that cancer cells feast on the protein content of blood leaving a thickened fluid prone to forming clots that adhere to vein walls and, untreated, can break loose and lodge, usually in the lungs, creating havoc with life essentials such as breathing.
Coumadin, orally once a day, is the standard treatment for DVT and started immediately. The exact dosage for this medication, however, must be adjusted for each individual over a period of 1 - 2 weeks at the start of treatment. For the first few days I take a companion drug (Lovenox) in addition to the Coumadin to moderate introduction into my system. The Lovenox prescription comes in a funny little pre-loaded syringe with a very fine, ultra sharp stubby needle that I stick into a pinched up roll of fat (what little is left) on my belly.
After a few days, I'll have enough Coumadin on board to put my blood into an acceptable range of fluidity to start making the final adjustments to the dosage. Lovenox stops and blood draws start to monitor Coumadin levels.
We will be looking for stability over time of several blood factors strongly influenced by diet, including Vitamin K mostly from green leafy vegetables. I'll have to cut back on my beloved spinach and big green salads that, especially in summertime, I dote on.
At the moment I am feeling fine and have no DVT symptoms or side effects from the medication for this condition.
We are proceedinig with the Zactima clinical trial as there are no adverse medication interactions. It is truly amazing what the human body can accommodate!
More details on the clinical trial soon -- first dose to be taken on Friday August 17th. Thank you for your continued support for both of us. We enfold you in our thankful embrace.
Copyright 2007
I haven't seen the radiologist's report so I have no details about the clot, although the ER attending physician explained that DVT is not an uncommon occurence as a sidebar to cancer. In lay terms he explained that cancer cells feast on the protein content of blood leaving a thickened fluid prone to forming clots that adhere to vein walls and, untreated, can break loose and lodge, usually in the lungs, creating havoc with life essentials such as breathing.
Coumadin, orally once a day, is the standard treatment for DVT and started immediately. The exact dosage for this medication, however, must be adjusted for each individual over a period of 1 - 2 weeks at the start of treatment. For the first few days I take a companion drug (Lovenox) in addition to the Coumadin to moderate introduction into my system. The Lovenox prescription comes in a funny little pre-loaded syringe with a very fine, ultra sharp stubby needle that I stick into a pinched up roll of fat (what little is left) on my belly.
After a few days, I'll have enough Coumadin on board to put my blood into an acceptable range of fluidity to start making the final adjustments to the dosage. Lovenox stops and blood draws start to monitor Coumadin levels.
We will be looking for stability over time of several blood factors strongly influenced by diet, including Vitamin K mostly from green leafy vegetables. I'll have to cut back on my beloved spinach and big green salads that, especially in summertime, I dote on.
At the moment I am feeling fine and have no DVT symptoms or side effects from the medication for this condition.
We are proceedinig with the Zactima clinical trial as there are no adverse medication interactions. It is truly amazing what the human body can accommodate!
More details on the clinical trial soon -- first dose to be taken on Friday August 17th. Thank you for your continued support for both of us. We enfold you in our thankful embrace.
Copyright 2007
Sunday, August 5, 2007
Heading South
We found a clinical trial site for vandetanib (Zactima) at the Medical University of South Carolina in Charleston and have an appointment for a physical exam and to meet the medical staff who will determine eligibility. They have reviewed my history and see nothing yet that could exclude me, so most of the hurdles will have been cleared by the time we head South.
We will be just 6 hours from home and find a lot of peace of mind for that in the face of a hurricane season NOAA forecasts as "active."
At this point, I am strong enough to tolerate a more lengthy trip, having finished the last course of chemotherapy on July 2 and the alternative vaccines last week. "Getting away" is a great relief from feeling house-bound during the treatments with so little energy, strength and stamina. So we are learning how to be tourists. I now have a far better understanding of why tourists dress as they do … for comfort! Those long days take their toll trekking from museum to attraction to restaurant in the relentless pursuit of documenting "been there." We find selectivity more suitable for our abilities. Fortunately we are both insatiably curious and find a leisurely pace through historic sights, museums and such very much to our liking.
Charleston’s history and charm await us; we hope they outweigh the gravity of the reason for the visit.
More next week.
Copyright 2007
We will be just 6 hours from home and find a lot of peace of mind for that in the face of a hurricane season NOAA forecasts as "active."
At this point, I am strong enough to tolerate a more lengthy trip, having finished the last course of chemotherapy on July 2 and the alternative vaccines last week. "Getting away" is a great relief from feeling house-bound during the treatments with so little energy, strength and stamina. So we are learning how to be tourists. I now have a far better understanding of why tourists dress as they do … for comfort! Those long days take their toll trekking from museum to attraction to restaurant in the relentless pursuit of documenting "been there." We find selectivity more suitable for our abilities. Fortunately we are both insatiably curious and find a leisurely pace through historic sights, museums and such very much to our liking.
Charleston’s history and charm await us; we hope they outweigh the gravity of the reason for the visit.
More next week.
Copyright 2007
Sunday, July 29, 2007
Optimistic Neutrality
Calcitonin blood level is a measure of thyroid cancer activity: the higher the number, the greater the cancer activity. Most recently, July 12th results vs those of June 6 show calcitonin down 25%. This is very significant and very encouraging.
On the other hand, the CEA (cancer antigens) marker is up 3% for the same period, essentially the same. Taken with the CT results reported in the last blog posting (no visible changes in size, location or number of tumors in the liver), these indicators encourage us to view the current status of this illness with "optimistic neutrality."
I am always ready to nudge momentum in a positive direction with a reasonable dose of optimism, just in case it is possible for mere humans to influence outcomes.
This "lull" comes at an opportune time as we search for a nearby clinical trial site for Zactima (vandetanib) (see last blog posting). The manufacturer designates research facilities scattered across the country as sites for human tests and requires a flurry of in-person appointments to launch participation. Early feedback from the Burlington, VT site is promising for my qualification. Trouble is distance – a two day drive – and the alternative of air travel – stressful and costly. For various reasons three sites originally designated that are closest to us are no longer participating in the trial.
Friday we cast a net of telephone messages to pin down more information. No responses: seems everyone was already bound for the beach. We’ll see what we fish up Monday to move treatment along a path we can characterize in terms more robust than "optimistic neutrality." How about "swell of hope?" "Positive surge?" "Affirmative momentum?"
Thank you for staying the course with us.
Copyright 2007
On the other hand, the CEA (cancer antigens) marker is up 3% for the same period, essentially the same. Taken with the CT results reported in the last blog posting (no visible changes in size, location or number of tumors in the liver), these indicators encourage us to view the current status of this illness with "optimistic neutrality."
I am always ready to nudge momentum in a positive direction with a reasonable dose of optimism, just in case it is possible for mere humans to influence outcomes.
This "lull" comes at an opportune time as we search for a nearby clinical trial site for Zactima (vandetanib) (see last blog posting). The manufacturer designates research facilities scattered across the country as sites for human tests and requires a flurry of in-person appointments to launch participation. Early feedback from the Burlington, VT site is promising for my qualification. Trouble is distance – a two day drive – and the alternative of air travel – stressful and costly. For various reasons three sites originally designated that are closest to us are no longer participating in the trial.
Friday we cast a net of telephone messages to pin down more information. No responses: seems everyone was already bound for the beach. We’ll see what we fish up Monday to move treatment along a path we can characterize in terms more robust than "optimistic neutrality." How about "swell of hope?" "Positive surge?" "Affirmative momentum?"
Thank you for staying the course with us.
Copyright 2007
Saturday, July 14, 2007
Change No Change
We met with our oncologist yesterday to review the CT scan taken Wednesday July 11th. Compared with the previous scan of 5/14 there are no changes. We appear to be at a stalemate in this confrontation.
But life and research march on. A new drug now being tested on humans is still accepting participants for the "Phase 2" part of its clinical trial and shows promise for persons with the type of cancer the doctors now think I have: metastatic medullary thyroid cancer. The generic name is vandetanib, trademarked ZACTIMA.
This drug is designed to inhibit growth of cancer cells and the capillaries that supply them with blood. So far 20% of study participants with this type of cancer have experienced significant reductions in calcitonin (tumor markers that measure activity of cancer cells in this particular form of cancer). This excites the research doctors very much and is so promising that the FDA has designated vandetanib "Orphan Drug" status. I’m checking into what this actually means to us.
If it excites the doctors, then I’d like to have more of this type of excitement in my life!
Vandetanib is a one per day pill taken so once I’m signed up and registered, I’m sent home with a bottle of pills and a report card. We have no details at this time. The research unit is at Washington (D.C.) Hospital Center which is associated with Georgetown University School of Medicine.
So we stand at another crossroads. We’ll see what vistas open to us as we learn more.
The best news is that here it is July 2007, 9 months since the diagnosis, and I’m still here! Thank you for staying with us through a difficult time. We look forward to your company as the journey unfolds.
Copyright 2007
Posted: July 14, 2007
But life and research march on. A new drug now being tested on humans is still accepting participants for the "Phase 2" part of its clinical trial and shows promise for persons with the type of cancer the doctors now think I have: metastatic medullary thyroid cancer. The generic name is vandetanib, trademarked ZACTIMA.
This drug is designed to inhibit growth of cancer cells and the capillaries that supply them with blood. So far 20% of study participants with this type of cancer have experienced significant reductions in calcitonin (tumor markers that measure activity of cancer cells in this particular form of cancer). This excites the research doctors very much and is so promising that the FDA has designated vandetanib "Orphan Drug" status. I’m checking into what this actually means to us.
If it excites the doctors, then I’d like to have more of this type of excitement in my life!
Vandetanib is a one per day pill taken so once I’m signed up and registered, I’m sent home with a bottle of pills and a report card. We have no details at this time. The research unit is at Washington (D.C.) Hospital Center which is associated with Georgetown University School of Medicine.
So we stand at another crossroads. We’ll see what vistas open to us as we learn more.
The best news is that here it is July 2007, 9 months since the diagnosis, and I’m still here! Thank you for staying with us through a difficult time. We look forward to your company as the journey unfolds.
Copyright 2007
Posted: July 14, 2007
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