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
Friday, May 18, 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
Wednesday, April 4, 2007
Treatment Review
We met with our oncologist today to review treatment status following a month of alternative/complementary treatment at Oasis of Hope Hospital in Tijuana, Mexico which followed six weeks of chemotherapy here in Virginia.
He confirmed the radiologist’s report of no change in tumor size between the 3 January and 23 March CT scans. I saw the images myself. In a review conducted last Friday (March 30) of the 20 February CT, the radiologist now reports no change from 3 January. A stable condition has been achieved. Whether this occurred because of the initial course of chemotherapy (Jan 18 – Feb 20) or from the alternative/complementary treatment (March 1 – March 28), each conducted independently without other concurrent treatment, it is now difficult to determine.
Other factors taken into account in choosing the next treatment step:
My reports of how I feel: greater stamina, greater strength (less fatigue), improved digestion, improved pain management (no longer require narcotic pain medication), clearer thinking.
Physical examination: liver is softer when palpated and size is unchanged.
Of concern is that two measures of cancer activity related to the thyroid continue to increase. We are taking an UltraSound of my thyroid to see if it can be biopsied and identified or eliminated as the primary site. This may give us a different selection of treatment options in the future.
For the meantime, we will carry on, with our oncologist’s blessing, what we have been doing: administering vaccines made from my own blood, the at-home continuation of the alternative treatment begun in Mexico. This technique is under study by US governmental health agencies and is thoroughly familiar to our oncologist.
We are learning to live with uncertainty and ambiguity. But doesn’t that define life?
Copyright 2007
He confirmed the radiologist’s report of no change in tumor size between the 3 January and 23 March CT scans. I saw the images myself. In a review conducted last Friday (March 30) of the 20 February CT, the radiologist now reports no change from 3 January. A stable condition has been achieved. Whether this occurred because of the initial course of chemotherapy (Jan 18 – Feb 20) or from the alternative/complementary treatment (March 1 – March 28), each conducted independently without other concurrent treatment, it is now difficult to determine.
Other factors taken into account in choosing the next treatment step:
My reports of how I feel: greater stamina, greater strength (less fatigue), improved digestion, improved pain management (no longer require narcotic pain medication), clearer thinking.
Physical examination: liver is softer when palpated and size is unchanged.
Of concern is that two measures of cancer activity related to the thyroid continue to increase. We are taking an UltraSound of my thyroid to see if it can be biopsied and identified or eliminated as the primary site. This may give us a different selection of treatment options in the future.
For the meantime, we will carry on, with our oncologist’s blessing, what we have been doing: administering vaccines made from my own blood, the at-home continuation of the alternative treatment begun in Mexico. This technique is under study by US governmental health agencies and is thoroughly familiar to our oncologist.
We are learning to live with uncertainty and ambiguity. But doesn’t that define life?
Copyright 2007
Tuesday, April 3, 2007
Treatment Results
The radiologist’s report of the 23 March 2007 CT scan from Oasis of Hope Hospital has been translated from Spanish to English now. The results were compared with the CT scan taken 3 January 2007 and show no change in the liver tumor size. This is an improvement because the midpoint CT scan of 20 February 2007 showed a growth in tumor size as noted in a previous blog posting.
The most recent blood tests of 22 March 2007 also show liver enzyme levels have returned to normal range for the first time since last Fall. These levels were the very first indication that something was wrong and led to further testing revealing the existence of cancer.
We meet with the oncologist this week. He will review the results from Oasis of Hope Hospital and we will discuss with him what he recommends as a next step in treatment.
Copyright 2007
The most recent blood tests of 22 March 2007 also show liver enzyme levels have returned to normal range for the first time since last Fall. These levels were the very first indication that something was wrong and led to further testing revealing the existence of cancer.
This CT confirmed again no tumors on my pancreas.
We meet with the oncologist this week. He will review the results from Oasis of Hope Hospital and we will discuss with him what he recommends as a next step in treatment.
More later.
Copyright 2007
Friday, March 23, 2007
Time Management
Tijuana’s sunshine and balmy breezes aside, the Issels doctors set a tough regimen. Here’s how my hours are filled.
DAILY:
(Duration for each task includes preparation and clean-up time)
½ hr - vital signs 2x/day plus weight every morning
¾ hr consume nine juice doses spaced throughout the day (some require mixing with other compounds)
1 ¼ hr two coffee enemas
½ hr one juice enema
2 ¼ hr three meals in dining room; info exchange with other patients and companions, socialization, check daily schedule, eat
¾ hr walk or other exercise/physical therapy
½ hr IV Vitamin B17
3 hr IV Vitamin C
1 ½ hr castor oil poultice with heat for liver
1 hr clay poultice for liver
½ hr schmoozing with the nurses
½ hr doctor exam/consult
¾ hr admin, email, Internet, appointments, phone calls
1 ½ hr personal toilette, body maintenance
½ hr misc medical: blood draw, imaging
1 hr lecture (breathing exercises, relaxation techniques, home follow-up)
Oh, yes, and sleep, blessed sleep whenever possible (I am awakened at midnight for one scheduled medication.)
OTHER SCHEDULED:
1 hr intermittent treatments 2x/week, (photoluminescence, vaccines, etc) 1 ¼ hr colonic (weekly)
OTHER:
1 hr with psychologist, stress management (weekly)
2 hr evening video and popcorn (weekly)
Visualization
Meditation
A few of these can be multi-tasked, but require change of clothing because they are messy. This is just what occupies MY time; Michael takes care of everything else (and there is plenty of that).
FROM MICHAEL:
I haven’t added up all those time segments- maybe Linda has more than 24 hours in each of her days… something I have long suspected! She is a meticulous record keeper- as a look at her jump log will show. Anyway, Linda is just fine, in high spirits and completely engaged with life on its own terms with no preconditions- a great attitude. We have been here together in this room for nearly a month now- and it has been a good and constructive time for us both. We are closer now than ever before.
DAILY:
(Duration for each task includes preparation and clean-up time)
½ hr - vital signs 2x/day plus weight every morning
¾ hr consume nine juice doses spaced throughout the day (some require mixing with other compounds)
1 ¼ hr two coffee enemas
½ hr one juice enema
2 ¼ hr three meals in dining room; info exchange with other patients and companions, socialization, check daily schedule, eat
¾ hr walk or other exercise/physical therapy
½ hr IV Vitamin B17
3 hr IV Vitamin C
1 ½ hr castor oil poultice with heat for liver
1 hr clay poultice for liver
½ hr schmoozing with the nurses
½ hr doctor exam/consult
¾ hr admin, email, Internet, appointments, phone calls
1 ½ hr personal toilette, body maintenance
½ hr misc medical: blood draw, imaging
1 hr lecture (breathing exercises, relaxation techniques, home follow-up)
Oh, yes, and sleep, blessed sleep whenever possible (I am awakened at midnight for one scheduled medication.)
OTHER SCHEDULED:
1 hr intermittent treatments 2x/week, (photoluminescence, vaccines, etc) 1 ¼ hr colonic (weekly)
OTHER:
1 hr with psychologist, stress management (weekly)
2 hr evening video and popcorn (weekly)
Visualization
Meditation
A few of these can be multi-tasked, but require change of clothing because they are messy. This is just what occupies MY time; Michael takes care of everything else (and there is plenty of that).
FROM MICHAEL:
I haven’t added up all those time segments- maybe Linda has more than 24 hours in each of her days… something I have long suspected! She is a meticulous record keeper- as a look at her jump log will show. Anyway, Linda is just fine, in high spirits and completely engaged with life on its own terms with no preconditions- a great attitude. We have been here together in this room for nearly a month now- and it has been a good and constructive time for us both. We are closer now than ever before.
Sunday, March 11, 2007
Newer Directions
We will have the next blood test results of treatment effectiveness perhaps by March 15. These tests are only indicators. A CT scan is the surest way to see what is happening to the tumors in my liver. The next one is scheduled for March 27, a 5 week interval after the previous one, probably the earliest that will show definitive changes in tumor size.
When we left home, we expected to continue the revised chemotherapy treatment recommended by our oncologist scheduled to begin March 1 concurrently with the Issels program. We reconsidered. We wanted to hear what the medical team here at the Issels Clinic had to say after reviewing all that had already been done plus the results of their incoming examinations and testing.
We have done that now. The doctors in the Issels program were willing to accommodate a concurrent chemotherapy treatment, but recommended the Issels program on its own. Our best assessment of the situation is that we gave chemotherapy alone a try with negative results (while delaying start of the Issels program). Now we feel that to continue chemotherapy with a new set of medications concurrently with an entirely different alternative regimen would only present mixed results and the inability to attribute success or failure to one of three treatment plans.
So we are going with the Issels program alone. At the end of the 4 week program, the most we will have lost is a month of treatment by whatever method we choose to proceed with at that point. We had already lost 6 weeks to unsuccessful chemotherapy treatment. We feel we have nothing to lose by full participation in the Issels program and quite possibly a lot to gain.
Copyright 2007
When we left home, we expected to continue the revised chemotherapy treatment recommended by our oncologist scheduled to begin March 1 concurrently with the Issels program. We reconsidered. We wanted to hear what the medical team here at the Issels Clinic had to say after reviewing all that had already been done plus the results of their incoming examinations and testing.
We have done that now. The doctors in the Issels program were willing to accommodate a concurrent chemotherapy treatment, but recommended the Issels program on its own. Our best assessment of the situation is that we gave chemotherapy alone a try with negative results (while delaying start of the Issels program). Now we feel that to continue chemotherapy with a new set of medications concurrently with an entirely different alternative regimen would only present mixed results and the inability to attribute success or failure to one of three treatment plans.
So we are going with the Issels program alone. At the end of the 4 week program, the most we will have lost is a month of treatment by whatever method we choose to proceed with at that point. We had already lost 6 weeks to unsuccessful chemotherapy treatment. We feel we have nothing to lose by full participation in the Issels program and quite possibly a lot to gain.
Copyright 2007
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