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
Sunday, July 29, 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
Sunday, June 17, 2007
Latest Results
The lab results from blood tests are flying in. Summary of the latest flurry:
Cancer markers: June 6th vs May 4th –
Calcitonin down 13%. Lower numbers are desirable as they indicate less cancer activity in the thyroid. There is still a long way to go to "normal, " but the physical exam of the same date as the blood test corroborates the improvement: shrinkage of the thyroid mass continuing a favorable trend from a peak of activity on February 27. Nice to have the corroboration and to see steady improvement over time.
CEA up 23%. This is worrisome because it indicates an increase in production of cancer antigens throughout my body.
Liver function: June 14th vs May 16th –
Remains within normal range. I’ll be sprucing up my diet and nutrition to reinforce and maintain improved health of this vital organ.
Red Blood Cells and Hemoglobin: June 14th vs June 6th –
These numbers reflect the degree to which I feel weak and tired: low numbers=low energy; higher numbers=higher energy as the oxygen-carrying capacity of the RBCs improves. For me, both remain low of the normal range, but not as critically as the May 16th tests that triggered the transfusion. Something to watch.
My subjective perspective: I’m holding my own. Sometimes I feel as I imagine a tightrope walker must during a traverse over the abyss: intensely concentrated on remaining
balanced by making minute adjustments to keep progress on track.
When I reach for support I find Michael by my side, and your energy lightening the load and guiding my balance. I am grateful for your presence with me on this journey.
Copyright 2007
Cancer markers: June 6th vs May 4th –
Calcitonin down 13%. Lower numbers are desirable as they indicate less cancer activity in the thyroid. There is still a long way to go to "normal, " but the physical exam of the same date as the blood test corroborates the improvement: shrinkage of the thyroid mass continuing a favorable trend from a peak of activity on February 27. Nice to have the corroboration and to see steady improvement over time.
CEA up 23%. This is worrisome because it indicates an increase in production of cancer antigens throughout my body.
Liver function: June 14th vs May 16th –
Remains within normal range. I’ll be sprucing up my diet and nutrition to reinforce and maintain improved health of this vital organ.
Red Blood Cells and Hemoglobin: June 14th vs June 6th –
These numbers reflect the degree to which I feel weak and tired: low numbers=low energy; higher numbers=higher energy as the oxygen-carrying capacity of the RBCs improves. For me, both remain low of the normal range, but not as critically as the May 16th tests that triggered the transfusion. Something to watch.
My subjective perspective: I’m holding my own. Sometimes I feel as I imagine a tightrope walker must during a traverse over the abyss: intensely concentrated on remaining
balanced by making minute adjustments to keep progress on track.
When I reach for support I find Michael by my side, and your energy lightening the load and guiding my balance. I am grateful for your presence with me on this journey.
Copyright 2007
Wednesday, June 13, 2007
New Meds
The new medications are taken orally, so we aren’t tied to the Cancer Center’s IV equipment. The regimen is complex and specific, requiring Xeloda be taken at the same time every day, twice each day, with food, on days 1 through 10. Temodar is added on days 10 through 14 taken three hours before or one hour after food once a day. Zofran counteracts nausea and is taken (WITHOUT FAIL!) one hour before the Temodar. I spend a lot of time setting cookie timers, then figuring out what has been timed.
For any given course of chemo, side effects are difficult to anticipate. WITHOUT FAIL is no mere caution. Once I forgot the Zofran and spent the night wrapped around the toilet bowl. That will never happen again. Side effects now are moderate and manageable, though unpleasant. This could change as my body accommodates itself to ongoing treatment. Nevertheless, they are unpleasant. So is the illness.
The results of the transfusion and ProCrit treatment noted in the last blog: RBC up 35%, HGB up 39%, an excellent response that set me up for the subsequent chemotherapy. This rebound speaks well for the status of my immune system: happy news!
The PLEASANT part is waking up each morning, greeting the sunshine of a new day, squeezing Michael’s hand and rejoicing in the gift of time.
Copyright 2007
For any given course of chemo, side effects are difficult to anticipate. WITHOUT FAIL is no mere caution. Once I forgot the Zofran and spent the night wrapped around the toilet bowl. That will never happen again. Side effects now are moderate and manageable, though unpleasant. This could change as my body accommodates itself to ongoing treatment. Nevertheless, they are unpleasant. So is the illness.
The results of the transfusion and ProCrit treatment noted in the last blog: RBC up 35%, HGB up 39%, an excellent response that set me up for the subsequent chemotherapy. This rebound speaks well for the status of my immune system: happy news!
The PLEASANT part is waking up each morning, greeting the sunshine of a new day, squeezing Michael’s hand and rejoicing in the gift of time.
Copyright 2007
Friday, May 18, 2007
Mixed Response
Mixed response is medical-eze for "no clear indicators of treatment efficacy." Recent tests returned offsetting results. In sum:
*Cancer markers May 4th vs April 5th – Calcitonin (thyroid) down 27%. This is promising, indicating less cancer activity from the thyroid. CEA up 6%, a marginal movement, indicating increased overall cancer cell activity in my body. Something to watch.
*Liver function May 16th vs May 4th – all three improved to within normal range. This means my liver is doing its job separating the good stuff from the waste and sending the unwanted on to the next stop out.
*Red blood cell and hemoglobin are markedly down. This is a matter for concern and may indicate suppression of the bone marrow’s ability to generate new RBCs.
Treatment recommendations discussed with our oncologist today:
*Blood transfusion to boost my body’s ability to withstand a course of chemotherapy. We have scheduled this for Monday, May 21.
*Resume chemotherapy using different medications: Xeloda for 14 days supplemented with Temodar days 10 through 14 to begin Tuesday, May 22. Rest for 14 days; resume cycle on day 28.
My subjective perspective: I have been losing ground very gradually during the past four weeks, particularly as to strength, endurance, and stamina. This is disappointing. Nevertheless, I am focusing on retaining gains and moving on to the next step.
We will confer with the medical team at the Issels Treatment Center/Oasis of Hope Hospital to discuss the advisability of concurrent treatments: their vaccine therapy plus the Xeloda/Temodar course of chemotherapy both administered here at home.
Maybe now is the time to dig out those best-of-the-best Seinfeld episodes and generate some giggle time here to loosen things up a bit.
Copyright 2007
*Cancer markers May 4th vs April 5th – Calcitonin (thyroid) down 27%. This is promising, indicating less cancer activity from the thyroid. CEA up 6%, a marginal movement, indicating increased overall cancer cell activity in my body. Something to watch.
*Liver function May 16th vs May 4th – all three improved to within normal range. This means my liver is doing its job separating the good stuff from the waste and sending the unwanted on to the next stop out.
*Red blood cell and hemoglobin are markedly down. This is a matter for concern and may indicate suppression of the bone marrow’s ability to generate new RBCs.
Treatment recommendations discussed with our oncologist today:
*Blood transfusion to boost my body’s ability to withstand a course of chemotherapy. We have scheduled this for Monday, May 21.
*Resume chemotherapy using different medications: Xeloda for 14 days supplemented with Temodar days 10 through 14 to begin Tuesday, May 22. Rest for 14 days; resume cycle on day 28.
My subjective perspective: I have been losing ground very gradually during the past four weeks, particularly as to strength, endurance, and stamina. This is disappointing. Nevertheless, I am focusing on retaining gains and moving on to the next step.
We will confer with the medical team at the Issels Treatment Center/Oasis of Hope Hospital to discuss the advisability of concurrent treatments: their vaccine therapy plus the Xeloda/Temodar course of chemotherapy both administered here at home.
Maybe now is the time to dig out those best-of-the-best Seinfeld episodes and generate some giggle time here to loosen things up a bit.
Copyright 2007
Tuesday, May 8, 2007
Happenings
In chronological order: Friday, May 4
Laboratory Bloodwork: Calcitonin (thyroid cancer indicator) and CEA (cancer antigens) plus the periodic complete blood and metabolic scan including liver function indicators. Results due this week.
Needle Biopsy of two nodules in my thyroid. This was done because an earlier test showed activity there plus the until recent continuous rise of Calcitonin. The need to do the biopsy sooner was overshadowed by the urgency of starting an effective treatment to protect my liver from further tumor growth. Results due this week.
That was just the morning!
Emergency Room visit. In late afternoon a surge of pain and pressure unlike anything I have experienced suddenly gripped my lower right abdomen. We are acutely sensitive, despite recent good news, that my liver continues under stress and that we must be alert to symptoms of failure.
To my good fortune and great comfort we found my own internist on duty in the ER. Over the course of the next four hours, one CT scan and the second complete blood work-up of the day he suggested possible causes: gallstones, kidney stones, gall bladder enlargement of unknown cause or simple gas. Now we "wait and see" and track the symptoms, mainly pain. Hard on the nerves, but each episode yields more nuggets of diagnostic usefulness. As a precaution, I stayed overnight at the hospital.
The GOOD NEWS: the CT scan from the ER noted that the liver tumors are still the same size they were on the January 3 CT!
We have much to be thankful for as we await results in your supportive company.
Copyright 2007
Laboratory Bloodwork: Calcitonin (thyroid cancer indicator) and CEA (cancer antigens) plus the periodic complete blood and metabolic scan including liver function indicators. Results due this week.
Needle Biopsy of two nodules in my thyroid. This was done because an earlier test showed activity there plus the until recent continuous rise of Calcitonin. The need to do the biopsy sooner was overshadowed by the urgency of starting an effective treatment to protect my liver from further tumor growth. Results due this week.
That was just the morning!
Emergency Room visit. In late afternoon a surge of pain and pressure unlike anything I have experienced suddenly gripped my lower right abdomen. We are acutely sensitive, despite recent good news, that my liver continues under stress and that we must be alert to symptoms of failure.
To my good fortune and great comfort we found my own internist on duty in the ER. Over the course of the next four hours, one CT scan and the second complete blood work-up of the day he suggested possible causes: gallstones, kidney stones, gall bladder enlargement of unknown cause or simple gas. Now we "wait and see" and track the symptoms, mainly pain. Hard on the nerves, but each episode yields more nuggets of diagnostic usefulness. As a precaution, I stayed overnight at the hospital.
The GOOD NEWS: the CT scan from the ER noted that the liver tumors are still the same size they were on the January 3 CT!
We have much to be thankful for as we await results in your supportive company.
Copyright 2007
Thursday, April 26, 2007
Still Here
Come April and I’m still here! That would have seemed a miracle last Fall with the escalating lab results and the tough news from the doctors. Now the latest results:
Calcitonin marks cancer activity in the thyroid specifically. Its high point for testing to date was recorded on 2-27-07; the next comparable test on 4-05-07 (results were extremely delayed) showed a decline of 9%, the first decline recorded for this test since the diagnosis.
CarcineoEmbryonic Antigen (CEA). This is a non-specific tumor marker indicating my body’s response to level of cancer cell activity. Numbers rise, more cancer cells are being created; numbers decline, fewer cancer cells are being created. Comparing the 2-27-07 test with the 4-05-07 test shows a decline of 20%, again the first decline.
These numbers together with the CT scan comparisons and most recent bloodwork results showing liver function back to normal range are very encouraging. We are guarding against complacency and holding our focus on improving or at least maintaining the present situation.
Thanks beyond measure to Michael for unswerving diligence and skill surfing and analyzing Internet information and resources and spearheading the effort necessary to get us to this point. Many of you have sent caring e-mails and loving messages of encouragement. It has been difficult to respond in a timely manner; you WILL hear from me personally as soon as I am able. With gratitude and blessings for the support, encouragement and positive energy, prayers, thoughts, and confidence from all of you.
Copyright 2007
Calcitonin marks cancer activity in the thyroid specifically. Its high point for testing to date was recorded on 2-27-07; the next comparable test on 4-05-07 (results were extremely delayed) showed a decline of 9%, the first decline recorded for this test since the diagnosis.
CarcineoEmbryonic Antigen (CEA). This is a non-specific tumor marker indicating my body’s response to level of cancer cell activity. Numbers rise, more cancer cells are being created; numbers decline, fewer cancer cells are being created. Comparing the 2-27-07 test with the 4-05-07 test shows a decline of 20%, again the first decline.
These numbers together with the CT scan comparisons and most recent bloodwork results showing liver function back to normal range are very encouraging. We are guarding against complacency and holding our focus on improving or at least maintaining the present situation.
Thanks beyond measure to Michael for unswerving diligence and skill surfing and analyzing Internet information and resources and spearheading the effort necessary to get us to this point. Many of you have sent caring e-mails and loving messages of encouragement. It has been difficult to respond in a timely manner; you WILL hear from me personally as soon as I am able. With gratitude and blessings for the support, encouragement and positive energy, prayers, thoughts, and confidence from all of you.
Copyright 2007
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