The latest results are in!
The CT scans of Thursday and Friday last week show a decrease in area of the largest lesion in my liver from the first CT taken August 14 to the present taken 11/9 of 41%!
Previous = 6.3 x 7.5 cm
Present = 5.2 x 5 cm
The remainder of liver lesions have not shown change.
There are obstructions of the ureter that have to be dealt with; kidney stones are a family inheritance.
For the meantime I continue on the (presumed) Zactima at least until the next scans which are scheduled for February. By that time we will be happy to head south for a small break in the Virginia winter.
We both thank you all for your positive energy ... look at the results!
Copyright 2007
http://www.lindalater.blogspot.com
Monday, November 12, 2007
Thursday, November 8, 2007
Nuggets
Occasional flashes of wisdom/humor/insight/wonder streak through my mind; I’ve taken to recording them quickly before they evaporate. They are not thoughts substantial enough to support further reflection. I offer them here, however, as evidence of the diverse nature of those phenomena that capture my attention during glimpses of the world as it exists for me now.
Surprising things I’ve unexpectedly come to know/learn:
How to quell a queasy feeling upon seeing a syringe.
Telling loved ones and strangers I have a chronic, often thought to be terminal, disease.
That the timetable to my final destination is typeset and on the printing press.
How to apply a really cold clay pack to a warm belly without flinching (haven’t mastered it yet, but I’m working on it).
How to dine as a vegetarian without soy products (become a soy detective).
A profound understanding of the concept of gratitude.
The rapture of a successful colonic.
Managing healthcare decisions utilizing sources with widely divergent philosophies of treatment.
Every arcane nuance of coffee enemas, from preparation to fulfillment.
Living with a catheter (even temporarily) for IV medications, implanted in my chest like an extra appendage requiring special maintenance.
Utter reliance on caregiver assistance to maintain medical treatments. Togetherness to the extreme.
I’ll not use 95% of the items stored in the kitchen “string drawer.”
Signs of Hope
Thinking about (even planning!) vacation travel excursions.
In January, planning the next Christmas holidays.
Several seasonal clothing exchanges: pack away winter; unpack summer. Repeat as necessary.
The New York Times coverage of the reality of living with cancer in the Sunday, July 29, 2007 issue. Excellent article, insightful especially of the swings between hope and despair through the course of the illness.
Disagreeable side effects indicative of medication efficacy.
Copyright 2007
Posted: October 19, 2007
http://www.lindalater.blogspot.com
Occasional flashes of wisdom/humor/insight/wonder streak through my mind; I’ve taken to recording them quickly before they evaporate. They are not thoughts substantial enough to support further reflection. I offer them here, however, as evidence of the diverse nature of those phenomena that capture my attention during glimpses of the world as it exists for me now.
Surprising things I’ve unexpectedly come to know/learn:
How to quell a queasy feeling upon seeing a syringe.
Telling loved ones and strangers I have a chronic, often thought to be terminal, disease.
That the timetable to my final destination is typeset and on the printing press.
How to apply a really cold clay pack to a warm belly without flinching (haven’t mastered it yet, but I’m working on it).
How to dine as a vegetarian without soy products (become a soy detective).
A profound understanding of the concept of gratitude.
The rapture of a successful colonic.
Managing healthcare decisions utilizing sources with widely divergent philosophies of treatment.
Every arcane nuance of coffee enemas, from preparation to fulfillment.
Living with a catheter (even temporarily) for IV medications, implanted in my chest like an extra appendage requiring special maintenance.
Utter reliance on caregiver assistance to maintain medical treatments. Togetherness to the extreme.
I’ll not use 95% of the items stored in the kitchen “string drawer.”
Signs of Hope
Thinking about (even planning!) vacation travel excursions.
In January, planning the next Christmas holidays.
Several seasonal clothing exchanges: pack away winter; unpack summer. Repeat as necessary.
The New York Times coverage of the reality of living with cancer in the Sunday, July 29, 2007 issue. Excellent article, insightful especially of the swings between hope and despair through the course of the illness.
Disagreeable side effects indicative of medication efficacy.
Copyright 2007
Posted: October 19, 2007
http://www.lindalater.blogspot.com
Thursday, November 1, 2007
Values Plummet!
Lab values have plummeted. Unlike the stock market, for us, the slide in values is good news!
Calcitonin (thyroid cancer marker) is down 24% on Oct 15 vs the prior labwork of September 26. The CEA (carcineoembryonic antigen) is down 37% for the same period. (See more complete description of these tests in blog of April 27, 2007.) Both markers are now four-digit numbers, below the 10,000 mark, whereas previously the Calcitonin was bouncing between 15,000 and 22,000, and the CEA hovering around 10,000. This is an exciting development!
As we wait to see future results, I’m sure you can understand why persons with cancer become numbers-obsessed.
More results as we return from Charleston in about 12 days.
Copyright 2007
http://lindalater.blogspot.com
Posted: November 1, 2007
Calcitonin (thyroid cancer marker) is down 24% on Oct 15 vs the prior labwork of September 26. The CEA (carcineoembryonic antigen) is down 37% for the same period. (See more complete description of these tests in blog of April 27, 2007.) Both markers are now four-digit numbers, below the 10,000 mark, whereas previously the Calcitonin was bouncing between 15,000 and 22,000, and the CEA hovering around 10,000. This is an exciting development!
As we wait to see future results, I’m sure you can understand why persons with cancer become numbers-obsessed.
More results as we return from Charleston in about 12 days.
Copyright 2007
http://lindalater.blogspot.com
Posted: November 1, 2007
Sunday, October 28, 2007
Chemo "Lite"
One informal, intuitive measurement of the effectiveness of chemotherapy for the treatment of cancer can be defined by the severity of the side effects of medication. Using one of the more common side effects, nausea as an example, one might say that the stronger the feeling of nausea, the more effective the medication is in treating the illness assuming, of course, that dosage of the medication has been accurately calculated.
As the Zactima clinical trial proceeds, we are reviewing the side effects I am experiencing assuming that the appearance of the known side effects indicates the presence of clinically effective Zactima, not the placebo. On a scale of 1 to 10, with 10 the most severe reaction, here is a list of known Zactima side effects plus a few I have added, ranked compared with past experience with the same side effect or a subjective evaluation of what severe might mean:
NAUSEA=4
FATIGUE (need for naps, motivation to "do," stamina, endurance)=3
DIARRHEA=7
RASH (red, patchy, itchy skin condition appearing following exposure to sunlight enduring for several weeks)=5
ANXIETY=3
DEPRESSION=2
EDEMA=3
SKIN SENSITIVITY=5
SIGNATURE (For me, a primary indicator of overall "health:" executed with flourish and verve demonstrating strength vs wavering, indecisive character formations with tremors evident demonstrating weakness)=2
Compared with previous courses of chemotherapy, the present Zactima trial feels relatively tolerable, thus "chemo lite."
We are thankful for the appearance of side effects that reinforce our intuition that we are receiving the real Zactima and we cheer: "Bring them on!"
Copyright 2007
As the Zactima clinical trial proceeds, we are reviewing the side effects I am experiencing assuming that the appearance of the known side effects indicates the presence of clinically effective Zactima, not the placebo. On a scale of 1 to 10, with 10 the most severe reaction, here is a list of known Zactima side effects plus a few I have added, ranked compared with past experience with the same side effect or a subjective evaluation of what severe might mean:
NAUSEA=4
FATIGUE (need for naps, motivation to "do," stamina, endurance)=3
DIARRHEA=7
RASH (red, patchy, itchy skin condition appearing following exposure to sunlight enduring for several weeks)=5
ANXIETY=3
DEPRESSION=2
EDEMA=3
SKIN SENSITIVITY=5
SIGNATURE (For me, a primary indicator of overall "health:" executed with flourish and verve demonstrating strength vs wavering, indecisive character formations with tremors evident demonstrating weakness)=2
Compared with previous courses of chemotherapy, the present Zactima trial feels relatively tolerable, thus "chemo lite."
We are thankful for the appearance of side effects that reinforce our intuition that we are receiving the real Zactima and we cheer: "Bring them on!"
Copyright 2007
Friday, October 12, 2007
First Anniversary
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
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
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
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
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
Saturday, March 10, 2007
Getting There
Inspiration is a fine pole star. Schumann’s Fourth Symphony is mine, elevating the goal, tapping glorified energy to direct my path. What is lacking is the push to handle the daily grind on the way to exultation.
Molly (the unsinkable) Brown is my guiding light for simply plowing through whatever the daily grind throws at me. I first made her acquaintance when Burgess Meredith’s Broadway production came to fruition as I was blooming early on in my New York City phase. Three times I returned to soak up the relentlessly upbeat score, a natural affinity for a former cheerleader. Tammy Grimes, a petite powerhouse, epitomized Molly for me, infusing my imagination with an energy that has survived the decades. Her husky voice conveyed Molly’s grit and determination to make a better life for herself. In the Hollywood version Debbie Reynolds added sparkle to grit: a more polished, less earthy Molly.
Molly’s spirit is very much with me these days, the original cast recording filling my hospital room with energy and life. The very first number says it all: “I Ain’t Down Yet!”. Here she sings: “Sure I’m tuckered and I might give out, but I won’t give in. … There’ll come a time when nothin’ nor nobody wants me down like I wants me up. … Oh I hate that word down, but I love that word up. ‘Cause up means hope and that’s just what I got. Hope!”
Molly Brown’s energy accompanies me- along with all of you- on this journey … “WE AIN’T DOWN YET!!”
Copyright 2007
Molly (the unsinkable) Brown is my guiding light for simply plowing through whatever the daily grind throws at me. I first made her acquaintance when Burgess Meredith’s Broadway production came to fruition as I was blooming early on in my New York City phase. Three times I returned to soak up the relentlessly upbeat score, a natural affinity for a former cheerleader. Tammy Grimes, a petite powerhouse, epitomized Molly for me, infusing my imagination with an energy that has survived the decades. Her husky voice conveyed Molly’s grit and determination to make a better life for herself. In the Hollywood version Debbie Reynolds added sparkle to grit: a more polished, less earthy Molly.
Molly’s spirit is very much with me these days, the original cast recording filling my hospital room with energy and life. The very first number says it all: “I Ain’t Down Yet!”. Here she sings: “Sure I’m tuckered and I might give out, but I won’t give in. … There’ll come a time when nothin’ nor nobody wants me down like I wants me up. … Oh I hate that word down, but I love that word up. ‘Cause up means hope and that’s just what I got. Hope!”
Molly Brown’s energy accompanies me- along with all of you- on this journey … “WE AIN’T DOWN YET!!”
Copyright 2007
Tuesday, March 6, 2007
There
We were hit with a lot all at once; even as we walked in the door treatment began. We are confident we are getting the best possible care available anywhere in the world. The individual treatment protocols constitute a holistic plan tailored for each patient. Twice a week the doctors from all four clinics review the status of every patient in the hospital.
This hospital treats the whole person, a concept not well communicated on the Issels website. First hand experience is the best educator.
For physical well being, interventions are administered one to two times every hour and include juices, probiotics, supplements, vitamins & minerals, IV for delivery of ozone, vitamins, and later in the program some vaccines, IntraMuscular injections and the most delectable yoghurt I have ever tasted. An education component includes training for 6 months of home treatments following discharge, coping methods and sessions for caregivers only.
The schedule for therapies for the emotions includes relaxation guidance, laughter, breathing, art, music and more. The spiritual component of the body-mind-spirit triad is addressed with (optional attendance) morning and evening devotions as well as Sunday services. This is an institution functioning frankly as a non-denominational spiritually-based medical delivery system. I know we have faith-funded medical institutions in our culture, however I am not acquainted with how they operate in this context if at all.
Volunteers from an organization comprised of former cancer patients join us at lunch and dinner. They provide perspective on the focus and purpose of the hospital programs. Their presence provides a needed social context in a rotating hospital population.
After six days of treatment, it is too early to identify trends in the course of this illness, but the spirit of this place and the kindness of the staff has brought us a measure of optimism.
Copyright 2007
Friday, February 23, 2007
New Directions
We have taken a breather and had a chance to absorb unwelcome news. During the three months of uncertainty as to appropriate treatment, we prepared for the next step by exploring options for each likely treatment outcome. We didn’t hope for this, but at least we are prepared to make an informed choice.
We are moving forward with what we believe to be the most sensible, productive and safest plan: to proceed with complementary treatments concurrently. We will initiate the oncologist-recommended chemotherapy as scheduled next week. Starting the same day, I will receive a 4-week program of in-patient care at the Issels Clinic across the border from San Diego in Mexico: www.issels.com .
This treatment program was first offered by an MD in the late 1940s in Europe and continues to be practiced at a clinic there as well as in Mexico. As science advances, new treatments have been added, including the production of an anti-cancer cell vaccine from my own blood, a method now being studied by several government agencies including the National Cancer Institute.
The Tijuana clinic is located in a hospital, a benefit for me since the current chemotherapy plan has harsh side effects at a time when my liver function is becoming increasingly stressed. I will feel very much better having emergency care available within seconds and Michael close by my side.
Meanwhile, I continue my own integrated program: prancing around the living room led by a Richard Simmons video, meditating (really works!!), eating my vegetables, thinking pure thoughts and happy to wake up to your greetings each day.
Copyright 2007
We are moving forward with what we believe to be the most sensible, productive and safest plan: to proceed with complementary treatments concurrently. We will initiate the oncologist-recommended chemotherapy as scheduled next week. Starting the same day, I will receive a 4-week program of in-patient care at the Issels Clinic across the border from San Diego in Mexico: www.issels.com .
This treatment program was first offered by an MD in the late 1940s in Europe and continues to be practiced at a clinic there as well as in Mexico. As science advances, new treatments have been added, including the production of an anti-cancer cell vaccine from my own blood, a method now being studied by several government agencies including the National Cancer Institute.
The Tijuana clinic is located in a hospital, a benefit for me since the current chemotherapy plan has harsh side effects at a time when my liver function is becoming increasingly stressed. I will feel very much better having emergency care available within seconds and Michael close by my side.
Meanwhile, I continue my own integrated program: prancing around the living room led by a Richard Simmons video, meditating (really works!!), eating my vegetables, thinking pure thoughts and happy to wake up to your greetings each day.
Copyright 2007
Wednesday, February 21, 2007
Not Good
The largest liver tumor has grown from 5.7cm to 8.3cm, a 46% increase in size. Therefore we are stopping the current protocol of Cisplatin and Irinotecan.
We will resume chemotherapy on March 1 with Temozolomide (Temodar) and Capecitabine (Xeloda), a self-administered treatment in pill form.
Of 17 patients monitored on this treatment with conditions similar to mine:
1 had a complete remission
9 had a partial response surviving for 9 months
6 had a greater than 50% decline in tumor markers (blood test results)
1 had a less than 50% decline in tumor markers
More later.
Copyright 2007
We will resume chemotherapy on March 1 with Temozolomide (Temodar) and Capecitabine (Xeloda), a self-administered treatment in pill form.
Of 17 patients monitored on this treatment with conditions similar to mine:
1 had a complete remission
9 had a partial response surviving for 9 months
6 had a greater than 50% decline in tumor markers (blood test results)
1 had a less than 50% decline in tumor markers
More later.
Copyright 2007
Tuesday, February 20, 2007
Crossing the Threshold: Independence
As first-born of ten I was expected to be independent.
Mother loved telling the story of how I learned to walk at the age of 8 months. One day she peeked into the nursery to see if I was still napping. She saw baby Linda, balanced upright, intensely concentrated, stepping hands-free from one side of the crib to the other. I had mastered this adult activity while no one was looking, assisting or encouraging. Fiercely and aggressively independent from the beginning!
Being a burden or bother to others has always been anathema to me, to ask for help, a sign of my incompetence and poor planning. Fortunately, those who don’t learn life’s lessons until later can learn them quickly! On Diagnosis Day, October 2006, I was alone and baldly inadequate to confront a stealth opponent that commanded the very resources essential for life.
I was back in that crib making the alternate choice. For help, I turned first to my stalwart companion of 26 years, my loving husband. He urged me to take the next step: to reach out for support and encouragement from others. The clincher was to take a step yet farther: to accept the aid of family, friends and an army of unknowns volunteering their caring and prayers for the strength to separate myself from the greedy appetite of this illness.
As we approach the first treatment benchmark, I take great comfort in feeling your presence at my side. You have been patient teachers of a most recalcitrant student who thanks you with unbounded gratitude.
Copyright 2007
Mother loved telling the story of how I learned to walk at the age of 8 months. One day she peeked into the nursery to see if I was still napping. She saw baby Linda, balanced upright, intensely concentrated, stepping hands-free from one side of the crib to the other. I had mastered this adult activity while no one was looking, assisting or encouraging. Fiercely and aggressively independent from the beginning!
Being a burden or bother to others has always been anathema to me, to ask for help, a sign of my incompetence and poor planning. Fortunately, those who don’t learn life’s lessons until later can learn them quickly! On Diagnosis Day, October 2006, I was alone and baldly inadequate to confront a stealth opponent that commanded the very resources essential for life.
I was back in that crib making the alternate choice. For help, I turned first to my stalwart companion of 26 years, my loving husband. He urged me to take the next step: to reach out for support and encouragement from others. The clincher was to take a step yet farther: to accept the aid of family, friends and an army of unknowns volunteering their caring and prayers for the strength to separate myself from the greedy appetite of this illness.
As we approach the first treatment benchmark, I take great comfort in feeling your presence at my side. You have been patient teachers of a most recalcitrant student who thanks you with unbounded gratitude.
Copyright 2007
Friday, February 16, 2007
from MICHAEL
A note from me to everyone who has written, phoned, messaged, or faxed to Lynn:
Words cannot suffice to express my thanks to you all. Your messages of hope, support, humor, warmth and- yes, Love- are invaluable. Lynn is enormously buoyed up by the surety that out there in the great world beyond pain and anxiety there are so many folks who hold her in their thoughts with such great affection. Please keep the good feelings flowing to this valiant lady!
Michael
Composed 02 14 07
Copyright 2007
Words cannot suffice to express my thanks to you all. Your messages of hope, support, humor, warmth and- yes, Love- are invaluable. Lynn is enormously buoyed up by the surety that out there in the great world beyond pain and anxiety there are so many folks who hold her in their thoughts with such great affection. Please keep the good feelings flowing to this valiant lady!
Michael
Composed 02 14 07
Copyright 2007
Sunday, February 4, 2007
Anthem
With treatment underway, the new waiting game is checkpoint test results. While waiting, my busy little mind searches for ways to improve this situation: perhaps add a component that will contribute to a positive outcome. So far, the search has been for substances to put into my body to improve the physical condition, and into my mind to improve the mental state in which the physical operates.
For straight to-the-heart sustenance, however, music has fed my soul in a deep and complete way leaving me more whole than other artistic media. As I reflect on inspiring music, Schumann’s Symphony #4 in D Minor springs to mind. Right from the start, it is triumphant! I favor the version by Paul Paray conducting the Detroit Symphony Orchestra for its vibrant intensity and architectural robustness, qualities that add a supportive dimension to my healing effort.
This choice represents a special legacy for me. Long ago, my sister bought it for her record collection and left me the original LP when she moved out as my roommate and married. A few years later she died, and the record became mine. I played that LP until the ridges and valleys in each groove wore down to a white hiss. Then I bought a tape cassette and played that to a howling whine. Now this music is on a CD, ready to serve as anthem for this journey, almost as if sent ahead by my sister’s spirit to help me through this time.
As the angst of waiting builds, I’ll keep cool with Schumann. So pass the ipod, and play on, Paray!
Copyright 2007
For straight to-the-heart sustenance, however, music has fed my soul in a deep and complete way leaving me more whole than other artistic media. As I reflect on inspiring music, Schumann’s Symphony #4 in D Minor springs to mind. Right from the start, it is triumphant! I favor the version by Paul Paray conducting the Detroit Symphony Orchestra for its vibrant intensity and architectural robustness, qualities that add a supportive dimension to my healing effort.
This choice represents a special legacy for me. Long ago, my sister bought it for her record collection and left me the original LP when she moved out as my roommate and married. A few years later she died, and the record became mine. I played that LP until the ridges and valleys in each groove wore down to a white hiss. Then I bought a tape cassette and played that to a howling whine. Now this music is on a CD, ready to serve as anthem for this journey, almost as if sent ahead by my sister’s spirit to help me through this time.
As the angst of waiting builds, I’ll keep cool with Schumann. So pass the ipod, and play on, Paray!
Copyright 2007
Tuesday, January 30, 2007
Treatment Protocols
For those interested, following are the various protocols in their accurate and final forms during the treatment phase of this situation. Some of you have asked for this information.
Chemotherapy single session, 4-1/2 – 5 hours (from nursing discharge notes) in sequence delivered (cycle=Treatment Day 1, Treatment Day 8, Rest Day 22; repeat):
Saline w/electrolytes:
Potassium 20mg IV
Magnesium 1 gram IV
Kytril 2mg orally )30 minutes before
Decadron 20mg IV )Cisplatin (for nausea)
Cisplatin 42mg IV
Irinotecan 70mg IV
Post therapy for side effects:
Zofran 8mg orally 2x/day for 3 days following treatment (for nausea)
Compazine 10 mg 1ea/6 hours if needed (for nausea)
Ongoing:
Potassium 20mg 1 ea 2x/day orally ongoing for low potassium levels
Pain medication: propoxyphene HCl 65mg, 2ea every 5 hours while awake
Supplementary Protocols:
Systemic Formulas OXCC Cleanser Cell #482 (combines the characteristics of healthy cells as it normalizes, maintains and cleanses), 1 ea 2x/day
Systemic Formulas OXOX Activator Cell #483 (supports healthy cell structure in deep tissues), 1 ea 2x/day
Systemic Formulas P #78 (nutritionally supports normal function of the pancreas), 1 ea 2x/day
Acupuncture: points for boosting immune and liver functions day following chemotherapy
Coffee enemas, 2x/day (facilitate elimination of toxins)
Renew Life, Digest More Ultra: Plant Enzyme ProprietaryFormula (digestive enzyme blend)
Renew Life, Essential Flora 50 blend Proprietary Formula (acidophilus blend)
Complementary Therapies:
Meditation: 20 min/day
Visualizations: Daily
Exercise: ~30 minutes/day, 6x/week, Rotating: Cardiovascular, resistance, QiGong
Yoga Class: 1-1/2 hr, 1x/week
Diet/Nutrition Counseling, as needed
Stress Management Counseling, as needed
Cancer Support Group, 2x/month
Vitamins & Minerals:
Vitamin E, 400 iu, (as di-Alpha Tocopheryl Acetate), 1 ea / day
Vitamin D, 800 iu, (as Cholecalciferol), 1 ea / day
Includes: calcium 119mg as dicalcium phosphate)
Selenium, 200 mg (as Selenium Yeast)
Includes: Vitamin C, 60mg (ascorbic acid)
Bioflavanoid 386mg
Brewers Yeast Debittered
Selenium Yeast
Citrus Bioflavanoids (orange peel extract=citrus sinensis)
Folic Acid, 400mcg
Includes: Calcium 75mg
"Other" = dicalcium phosphate
Vitamin C, 1000mg (as ascorbic acid), 1 ea 2x/day
Omega 3 Fish Oil, 1000mg softgels, 1 ea 3x/day
Saturated Fat 0.5g
Polyunsaturated Fat less than 0.5g
Monounsaturated Fat 0g
Cholesterol 5 mg
EPA 180mg
DHA 120mg
Each treatment team has this information. If anyone sees worrisome interactions, please notify us so that we can review for suitability.
Thank you with gratitude for your participation in my care.
Copyright 2007
Chemotherapy single session, 4-1/2 – 5 hours (from nursing discharge notes) in sequence delivered (cycle=Treatment Day 1, Treatment Day 8, Rest Day 22; repeat):
Saline w/electrolytes:
Potassium 20mg IV
Magnesium 1 gram IV
Kytril 2mg orally )30 minutes before
Decadron 20mg IV )Cisplatin (for nausea)
Cisplatin 42mg IV
Irinotecan 70mg IV
Post therapy for side effects:
Zofran 8mg orally 2x/day for 3 days following treatment (for nausea)
Compazine 10 mg 1ea/6 hours if needed (for nausea)
Ongoing:
Potassium 20mg 1 ea 2x/day orally ongoing for low potassium levels
Pain medication: propoxyphene HCl 65mg, 2ea every 5 hours while awake
Supplementary Protocols:
Systemic Formulas OXCC Cleanser Cell #482 (combines the characteristics of healthy cells as it normalizes, maintains and cleanses), 1 ea 2x/day
Systemic Formulas OXOX Activator Cell #483 (supports healthy cell structure in deep tissues), 1 ea 2x/day
Systemic Formulas P #78 (nutritionally supports normal function of the pancreas), 1 ea 2x/day
Acupuncture: points for boosting immune and liver functions day following chemotherapy
Coffee enemas, 2x/day (facilitate elimination of toxins)
Renew Life, Digest More Ultra: Plant Enzyme ProprietaryFormula (digestive enzyme blend)
Renew Life, Essential Flora 50 blend Proprietary Formula (acidophilus blend)
Complementary Therapies:
Meditation: 20 min/day
Visualizations: Daily
Exercise: ~30 minutes/day, 6x/week, Rotating: Cardiovascular, resistance, QiGong
Yoga Class: 1-1/2 hr, 1x/week
Diet/Nutrition Counseling, as needed
Stress Management Counseling, as needed
Cancer Support Group, 2x/month
Vitamins & Minerals:
Vitamin E, 400 iu, (as di-Alpha Tocopheryl Acetate), 1 ea / day
Vitamin D, 800 iu, (as Cholecalciferol), 1 ea / day
Includes: calcium 119mg as dicalcium phosphate)
Selenium, 200 mg (as Selenium Yeast)
Includes: Vitamin C, 60mg (ascorbic acid)
Bioflavanoid 386mg
Brewers Yeast Debittered
Selenium Yeast
Citrus Bioflavanoids (orange peel extract=citrus sinensis)
Folic Acid, 400mcg
Includes: Calcium 75mg
"Other" = dicalcium phosphate
Vitamin C, 1000mg (as ascorbic acid), 1 ea 2x/day
Omega 3 Fish Oil, 1000mg softgels, 1 ea 3x/day
Saturated Fat 0.5g
Polyunsaturated Fat less than 0.5g
Monounsaturated Fat 0g
Cholesterol 5 mg
EPA 180mg
DHA 120mg
Each treatment team has this information. If anyone sees worrisome interactions, please notify us so that we can review for suitability.
Thank you with gratitude for your participation in my care.
Copyright 2007
Wednesday, January 24, 2007
Treatment
At last! Chemotherapy has such a bad reputation, I never thought I’d be looking forward to it! This transition marks the end of a long period of intense anxiety and suspense between the first diagnosis of cancer and the final treatment plan. During that time, the cancer was presumably progressing at an unknown rate, the tumors in my liver further curtailing functions essential to life.
The low point came between Thanksgiving and Christmas, skating on thin ice without treatment and a feeling of slipping away. Unanticipated setbacks (death of our oncologist) and holiday downtime prevented developing the diagnosis while adding to uncertainty and tension. We consulted qualified professionals to learn what could be done to bolster liver function and my immune system while waiting. Herbal supplements, vitamins and a rigorous nutrition/diet plan to reduce toxins as much as possible apparently worked. Just before Christmas, I began to gain a bit of strength with less fatigue, improving my spirits. A rekindled clarity appeared in my eye along with a sense of purpose.
Now we’re back in unknown territory. Each person responds to chemotherapy individually, just as they manifest the symptoms of the illness uniquely.
The mechanics are simple: a 6-hour IV drip delivering in order: hydration, Cisplatin, anti-nausea medication, and Irinotecan. The cycle: two consecutive Thursdays, skip one; repeat. Blood tests provide weekly glimpses of my response to the treatments. Monitor progress at the 6-week mark with a CT scan.
These benchmarks are engraved into our calendar; we eagerly await results.
Copyright 2007
The low point came between Thanksgiving and Christmas, skating on thin ice without treatment and a feeling of slipping away. Unanticipated setbacks (death of our oncologist) and holiday downtime prevented developing the diagnosis while adding to uncertainty and tension. We consulted qualified professionals to learn what could be done to bolster liver function and my immune system while waiting. Herbal supplements, vitamins and a rigorous nutrition/diet plan to reduce toxins as much as possible apparently worked. Just before Christmas, I began to gain a bit of strength with less fatigue, improving my spirits. A rekindled clarity appeared in my eye along with a sense of purpose.
Now we’re back in unknown territory. Each person responds to chemotherapy individually, just as they manifest the symptoms of the illness uniquely.
The mechanics are simple: a 6-hour IV drip delivering in order: hydration, Cisplatin, anti-nausea medication, and Irinotecan. The cycle: two consecutive Thursdays, skip one; repeat. Blood tests provide weekly glimpses of my response to the treatments. Monitor progress at the 6-week mark with a CT scan.
These benchmarks are engraved into our calendar; we eagerly await results.
Copyright 2007
Wednesday, January 17, 2007
Leavening
Optimism is infectious, spread by cheerleaders, fitness consultants, inspirational speakers and myself, a perfect Typhoid Mary of optimistic viruses. I do, however, harbor a reserve of realism used to identify obstacles, hurdles, and roadblocks before staking out benchmarks toward a goal. Here is my adjusted assessment of this situation after meeting with our new oncologist, a reasonable, level-headed and practical man. At the top of the To Do list he prepared for me: "Don’t panic any more than necessary."
The facts have been previously posted. To summarize:
Goal of treatment: shrink liver tumors; control symptoms
Chemotherapy starts tomorrow: two weeks on, one week off; repeat; check progress with CT
Prognosis: Not curable; IF treatment works, "you could last weeks to years". Here are the numbers for those with the type of cancer I have who have been treated with the chemotherapy I will receive:
43% have tumor shrinkage of greater than 50% of the pre-treatment size
29% have stabilization of tumor size (no growth during treatment)
28% experience growth of the tumors
We have a 72% likelihood of improving on a precarious, but not irretrievable, situation. This deserves optimism, especially considering the positive factors:
My overall sturdy health, especially recent recession of symptoms
My intrepid husband
My unfailing family
Help and encouragement from an army of friends and supporters
A standard protocol for chemotherapy
A green light for continuing herbal supplements during chemotherapy
This is the biggest challenge of my life and a formidable task for those who join me on this journey. Embrace and spread the virus of rational optimism!
Copyright 2007
Wednesday, January 10, 2007
From MICHAEL
Lynn remains remarkable in her every aspect. Faced with an almost unrelievedly dismal stream of diagnoses and delays that would paralyze and cast down most people, she remains buoyant.
Each morning she communes with her inner self- with meditation and visualization. Daily she puts on her workout outfit and leg warmers and bounces around the living room to her funky old Richard Simmons VCR exercises. She takes weekly yoga classes at the Y, controls her diet, takes natural supplements. She remains beautiful and full of life energy.
She thinks constantly about all her friends and family. She is concerned for them, stays in close touch, gifts them with her love and reassurance. I thought I really knew Lynn after 26 years together but now I find that she astonishes me every day. I adore her; I am inspired to be the best companion I can possibly be. I am totally confident that she will triumph!
Copyright 2007
Posted 011007
Each morning she communes with her inner self- with meditation and visualization. Daily she puts on her workout outfit and leg warmers and bounces around the living room to her funky old Richard Simmons VCR exercises. She takes weekly yoga classes at the Y, controls her diet, takes natural supplements. She remains beautiful and full of life energy.
She thinks constantly about all her friends and family. She is concerned for them, stays in close touch, gifts them with her love and reassurance. I thought I really knew Lynn after 26 years together but now I find that she astonishes me every day. I adore her; I am inspired to be the best companion I can possibly be. I am totally confident that she will triumph!
Copyright 2007
Posted 011007
Monday, January 8, 2007
Gratitude
The diagnosis is still cancer, a word weighted in the imagination with scary prospects. The emphasis, however, has shifted from extreme responses aimed at a diagnosis of pancreatic cancer to confrontation with practical, proven treatment methods for specific outcomes with a reasonable expectation of improvement. Specifically, reducing the number and size of the tumors now in my liver will improve liver function allowing me to gain strength and restore a measure of resilience to meet future challenges.
Already I feel strength returning, with minimal changes in diet and exercise, and with supplements to improve liver and pancreas function. Although symptoms haven't disappeared, I am more comfortable and have a greater number of days with less fatigue and more cheer. Collectively, these gains put me in a better position to fully utilize the upcoming chemotherapy, incorporating it into my body with as little disturbance and as great benefit as possible.
Your support is paving the way for improvement. Individuals and faith groups focused on prayer have lifted me. Positive energy flows in from dear friends and family. Affirmations and visualizations liberate my spirit, separating me from harm. Professionals generously offer their best opinions, often in the face of relentless questioning from a partially informed patient-caregiver team.
My gratitude to all of you is boundless, my thanks immeasurable. I still need your help with the next task at hand: reducing the number and size of tumors in my liver and supporting regeneration of fresh healthy liver cells. I take all of you and your support into my embrace and heart.
Copyright 2007
Already I feel strength returning, with minimal changes in diet and exercise, and with supplements to improve liver and pancreas function. Although symptoms haven't disappeared, I am more comfortable and have a greater number of days with less fatigue and more cheer. Collectively, these gains put me in a better position to fully utilize the upcoming chemotherapy, incorporating it into my body with as little disturbance and as great benefit as possible.
Your support is paving the way for improvement. Individuals and faith groups focused on prayer have lifted me. Positive energy flows in from dear friends and family. Affirmations and visualizations liberate my spirit, separating me from harm. Professionals generously offer their best opinions, often in the face of relentless questioning from a partially informed patient-caregiver team.
My gratitude to all of you is boundless, my thanks immeasurable. I still need your help with the next task at hand: reducing the number and size of tumors in my liver and supporting regeneration of fresh healthy liver cells. I take all of you and your support into my embrace and heart.
Copyright 2007
Thursday, January 4, 2007
Moving on to Treatment
BEST NEWS:
Per yesterday’s very fine-slice CT scans: there is no tumor on my pancreas! No pancreatic cancer!
OTHER NEWS:
We need to move on to treatment without delay to relieve my liver of the burden of the many neuro-endocrine tumors already there growing at an unknown rate.
There are cancerous growths in my thyroid that may or may not be related to the existing cancer. That can be determined by a biopsy which can be done here in Houston or in Virginia.
TREATMENT PLAN:
Chemotherapy to start within the next couple of weeks. Two successive Mondays followed by one Monday off; repeat for 12 weeks total. Take another CT scan to observe any changes. Adjust the treatment plan accordingly. Hopefully, the tumors will have shrunk or at least stopped multiplying and growing.
DETAILS:
Working diagnosis: High grade Poorly Differentiated Neuro-Endocrine Carcinoma, primary site unknown; metastasized to liver with heavy load of tumor growth; no pancreatic tumors observed; thyroid anomalies present. Interpretation: This is the worst case situation for this type of cancer that does not show its symptoms until the very latest stages of the disease. Thus the need to move on the treatment as soon as possible.
Further diagnostic tests: 1) examination of liver biopsy tissue for confirmation of “high grade poorly differentiated” status of liver tumors, and 2) ultra-sound guided biopsy of thyroid right lobe to determine if this is a separate cancer site or is a metastasis of the neuro-endocrine cancer.
Treatment: Chemotherapy recommended by MD Anderson to start at earliest opportunity. We have decided to have that happen in Virginia where we can be comfortably at home in our own house with our local cancer center team. The standard treatment of this is Irinotecan (Camptosar) and Cisplatin (CDDP, DDPPlatinol, or Platinol-AQ), both administered IV requiring about 6 hours on two successive Mondays, skip a Monday and repeat the cycle for 12 weeks before measuring status of tumor growth.
Typical side effects for a full dosage include loss of hair (eek!!) as well as other things less obvious but potentially much more serious. This was a very tough decision. We do not love chemo. It is scary. But we are now convinced of the need to slow and hopefully stop any further liver deterioration because you cannot live without your liver! The dosage recommended for me is 50% or less than the full dosage, so perhaps the symptoms won’t be as severe as the worst-case reports.
After this treatment course is completed we will have a total re-evaluation of my overall condition. Then we will plan the next phase of treatment. Several possibilities have been evaluated by us already, but we need to stabilize my liver before we move on.
Copyright 2007
Per yesterday’s very fine-slice CT scans: there is no tumor on my pancreas! No pancreatic cancer!
OTHER NEWS:
We need to move on to treatment without delay to relieve my liver of the burden of the many neuro-endocrine tumors already there growing at an unknown rate.
There are cancerous growths in my thyroid that may or may not be related to the existing cancer. That can be determined by a biopsy which can be done here in Houston or in Virginia.
TREATMENT PLAN:
Chemotherapy to start within the next couple of weeks. Two successive Mondays followed by one Monday off; repeat for 12 weeks total. Take another CT scan to observe any changes. Adjust the treatment plan accordingly. Hopefully, the tumors will have shrunk or at least stopped multiplying and growing.
DETAILS:
Working diagnosis: High grade Poorly Differentiated Neuro-Endocrine Carcinoma, primary site unknown; metastasized to liver with heavy load of tumor growth; no pancreatic tumors observed; thyroid anomalies present. Interpretation: This is the worst case situation for this type of cancer that does not show its symptoms until the very latest stages of the disease. Thus the need to move on the treatment as soon as possible.
Further diagnostic tests: 1) examination of liver biopsy tissue for confirmation of “high grade poorly differentiated” status of liver tumors, and 2) ultra-sound guided biopsy of thyroid right lobe to determine if this is a separate cancer site or is a metastasis of the neuro-endocrine cancer.
Treatment: Chemotherapy recommended by MD Anderson to start at earliest opportunity. We have decided to have that happen in Virginia where we can be comfortably at home in our own house with our local cancer center team. The standard treatment of this is Irinotecan (Camptosar) and Cisplatin (CDDP, DDPPlatinol, or Platinol-AQ), both administered IV requiring about 6 hours on two successive Mondays, skip a Monday and repeat the cycle for 12 weeks before measuring status of tumor growth.
Typical side effects for a full dosage include loss of hair (eek!!) as well as other things less obvious but potentially much more serious. This was a very tough decision. We do not love chemo. It is scary. But we are now convinced of the need to slow and hopefully stop any further liver deterioration because you cannot live without your liver! The dosage recommended for me is 50% or less than the full dosage, so perhaps the symptoms won’t be as severe as the worst-case reports.
After this treatment course is completed we will have a total re-evaluation of my overall condition. Then we will plan the next phase of treatment. Several possibilities have been evaluated by us already, but we need to stabilize my liver before we move on.
Copyright 2007
Tuesday, January 2, 2007
A Well-Oiled Machine
The MD Anderson Cancer Center is a near flawless machine bringing all its resources to focus on the individual in the spotlight. Today it was me!
When the newcomer arrives at the main entrance reception desk, a printout is prepared with the individualized appointment schedule for the day, including location and description of events that will occur at each stop.
The miracle is that when you arrive at your destination, they expect you, know who you are and what needs to be done before they pack you off to your next appointment. The professional staff appears with your case history on the computer monitor located in each exam room, and enters the data you provide verbally on the spot. Your films and written reports have already been scanned into your data record ready for viewing. All this has been reviewed by each professional. So when you see them, their medical questions are minimal and focused, leaving time for a glimpse of bedside manner, even wry humor.
All done in two languages and no language. Every area is identified by an organic design such as a fish or a flower. Before you know it, you won’t even have to travel to Houston, just speak into your communicator: “Beam me up, Scotty!”
They continue to find me a “rara avis.” Diagnosis promised for Thursday’s appointment. More at that time.
Copyright 2007
When the newcomer arrives at the main entrance reception desk, a printout is prepared with the individualized appointment schedule for the day, including location and description of events that will occur at each stop.
The miracle is that when you arrive at your destination, they expect you, know who you are and what needs to be done before they pack you off to your next appointment. The professional staff appears with your case history on the computer monitor located in each exam room, and enters the data you provide verbally on the spot. Your films and written reports have already been scanned into your data record ready for viewing. All this has been reviewed by each professional. So when you see them, their medical questions are minimal and focused, leaving time for a glimpse of bedside manner, even wry humor.
All done in two languages and no language. Every area is identified by an organic design such as a fish or a flower. Before you know it, you won’t even have to travel to Houston, just speak into your communicator: “Beam me up, Scotty!”
They continue to find me a “rara avis.” Diagnosis promised for Thursday’s appointment. More at that time.
Copyright 2007
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