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
Sunday, August 26, 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
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