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
Thursday, January 4, 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
Thursday, December 28, 2006
Reality
Reality changes.
Looking back at the 12/15/06 posting, I see that optimism rained, no, poured from a wide-open spigot. The reality in the catch basin was meager. The idea of a holiday trip to Texas was born of optimism, but faltered in a new reality.
The "don’t plan, do" model doesn’t work any more. Approaching the trip more reflectively, I now see a long preparatory "To Do" list dwarfing my measure of stamina available to apply to it.
Updated reality: "don’t do, plan." Grab inspiration once, think twice about what it will take to make it happen: energy expended, time consumed, other "To Do’s" postponed. My rosy holiday plans for travel were based on an outdated understanding of my current abilities.
Does this mean the joy of spontaneity will be wrung from my life? I don’t think so. Perhaps I will cultivate a keener awareness of the opportunity for spontaneity, a quick assessment of options, and a lightning fast opening to the pleasure at hand.
New reality, new perspective, meeting and learning to know another aspect of "me."
Written 12/22/2006.
Copyright 2006
Looking back at the 12/15/06 posting, I see that optimism rained, no, poured from a wide-open spigot. The reality in the catch basin was meager. The idea of a holiday trip to Texas was born of optimism, but faltered in a new reality.
The "don’t plan, do" model doesn’t work any more. Approaching the trip more reflectively, I now see a long preparatory "To Do" list dwarfing my measure of stamina available to apply to it.
Updated reality: "don’t do, plan." Grab inspiration once, think twice about what it will take to make it happen: energy expended, time consumed, other "To Do’s" postponed. My rosy holiday plans for travel were based on an outdated understanding of my current abilities.
Does this mean the joy of spontaneity will be wrung from my life? I don’t think so. Perhaps I will cultivate a keener awareness of the opportunity for spontaneity, a quick assessment of options, and a lightning fast opening to the pleasure at hand.
New reality, new perspective, meeting and learning to know another aspect of "me."
Written 12/22/2006.
Copyright 2006
No Progress
The results of two additional diagnostic tests are in, and we are no closer to a firm diagnosis.
One exotic test screened for a gene mutation that would, along with other factors, support a diagnosis of medullary carcinoma of the thyroid. This proved negative.
On the other test, all indicators were within normal limits.
We are still in territory labeled "mixed results." Each round of tests eliminates one or another possibility for the primary site of the cancer. That one nugget of information will help shape a treatment plan. More tests are likely in Houston; none are scheduled for the interim.
In the meantime, we wait until our appointed time in Houston and quietly celebrate the holiday at home. The sun in shining here; we welcome the warmth of the season, the day and the moment and open our arms to share it with you in the spirit of the holiday season.
Written 12/22/2006
Copyright 2006
One exotic test screened for a gene mutation that would, along with other factors, support a diagnosis of medullary carcinoma of the thyroid. This proved negative.
On the other test, all indicators were within normal limits.
We are still in territory labeled "mixed results." Each round of tests eliminates one or another possibility for the primary site of the cancer. That one nugget of information will help shape a treatment plan. More tests are likely in Houston; none are scheduled for the interim.
In the meantime, we wait until our appointed time in Houston and quietly celebrate the holiday at home. The sun in shining here; we welcome the warmth of the season, the day and the moment and open our arms to share it with you in the spirit of the holiday season.
Written 12/22/2006
Copyright 2006
Friday, December 15, 2006
Progress
MD Anderson Cancer Center has reviewed all the diagnostic materials collected to date, has agreed to see me and to provide a second opinion.
The diagnostic label, for the meantime, is Carcinoma of Unknown Origin, Stage IV.
Treatment: Next week we will head west for a Texas holiday with family, and report to Houston on January 2nd for 5-7 business days of interviews and, most likely, further testing. The result should be a recommended treatment plan from the MD Anderson doctors.
Our preference is for a treatment that can be administered close to home. Not only is it more convenient and less costly, but, I suspect, is more effective in familiar surroundings with the support of family and friends nearby.
We have investigated and continue to evaluate complementary and alternative treatments for cancer. We believe an integrated approach makes fullest use of the body’s natural desire to nourish the life force while bringing to bear the latest technological and curative tools and methods available from medicine and science. Our final decision regarding treatment will take this into account.
Prognosis: Without a firm diagnosis, difficult to say. None of the likely outcomes are particularly sunny. The characteristic slow growth of carcinoid tumors (if that is confirmed) gives us a bit of time to formulate a plan and treat. On the other hand, the spread of tumors is extensive and continues while I remain untreated. Now we are moving again!
Every day is a gift. Every morning I unwrap that gift and give thanks.
More news as available. Happy holidays everyone!
Copyright 2006
The diagnostic label, for the meantime, is Carcinoma of Unknown Origin, Stage IV.
Treatment: Next week we will head west for a Texas holiday with family, and report to Houston on January 2nd for 5-7 business days of interviews and, most likely, further testing. The result should be a recommended treatment plan from the MD Anderson doctors.
Our preference is for a treatment that can be administered close to home. Not only is it more convenient and less costly, but, I suspect, is more effective in familiar surroundings with the support of family and friends nearby.
We have investigated and continue to evaluate complementary and alternative treatments for cancer. We believe an integrated approach makes fullest use of the body’s natural desire to nourish the life force while bringing to bear the latest technological and curative tools and methods available from medicine and science. Our final decision regarding treatment will take this into account.
Prognosis: Without a firm diagnosis, difficult to say. None of the likely outcomes are particularly sunny. The characteristic slow growth of carcinoid tumors (if that is confirmed) gives us a bit of time to formulate a plan and treat. On the other hand, the spread of tumors is extensive and continues while I remain untreated. Now we are moving again!
Every day is a gift. Every morning I unwrap that gift and give thanks.
More news as available. Happy holidays everyone!
Copyright 2006
Tuesday, December 12, 2006
Oncologist Dies in Plane Crash
Oncologist Christopher Desch, MD was killed Sunday December 10, 2006 when the single-engine airplane he was piloting lost power and crashed into trees near the Charlottesville-Albemarle airport, Virginia. He was flying a 30-year old Piper Lance owned by the Wingnuts Flying Club of which he was a three year member. He held a pilot’s license with instrument rating.
Dr Desch was highly regarded in the cancer care community both locally and nationally. "He was an absolutely wonderful physician … very compassionate and skilled … very concerned about the effective delivery of cancer care," said Dr Gordon D Ginder, director of Massey Cancer Center. (Richmond Times Dispatch).
His leadership and guidance gave heart to the Rappahannock General Hospital Cancer Clinic. His national reputation brought notice to our petition to MD Anderson to review the diagnosis and consider my case for treatment there. In the short time we worked with him we came to appreciate his attentive, caring manner and the respect with which he listened to what we had to say.
We mourn his loss for the sake of all whose lives he touched.
Copyright 2006
Dr Desch was highly regarded in the cancer care community both locally and nationally. "He was an absolutely wonderful physician … very compassionate and skilled … very concerned about the effective delivery of cancer care," said Dr Gordon D Ginder, director of Massey Cancer Center. (Richmond Times Dispatch).
His leadership and guidance gave heart to the Rappahannock General Hospital Cancer Clinic. His national reputation brought notice to our petition to MD Anderson to review the diagnosis and consider my case for treatment there. In the short time we worked with him we came to appreciate his attentive, caring manner and the respect with which he listened to what we had to say.
We mourn his loss for the sake of all whose lives he touched.
Copyright 2006
Monday, December 4, 2006
"An Interesting Case"
No definitive answers yet.
Our oncologist reviewed the results of the tests done last week. The octreotide scan came up normal all around. The urine analysis was negative for the tested component. The blood work came up elevated for colon/gastrointestinal and thyroid cancer; normal all other. The thyroid ultrasound shows cystic areas. Put together, an inconclusive picture.
At this point, we will do additional bloodwork to investigate two possibilities: 1) Medullary carcinoma of the thyroid (a slow growing tumor), and 2) Neuro endocrine tumor of the pancreas.
The bloodwork results will determine whether to do a biopsy of my thyroid. Our Oncologist will submit these and all prior findings to the MD Anderson specialists who have the techniques, technology and experience to sort through these mixed results and call for further diagnostic work-ups and/or determine a final diagnosis as a foundation for a treatment plan. He is pressing for an early review, not only to get an answer for us as soon as possible, but also because MD Anderson is beginning a research program in January for a new medicine (serafamib) that could apply to my situation if in fact the thyroid diagnosis is confirmed. At present there is no standard treatment plan for this type of thyroid cancer. The good news is that this is a slow growing type of cancer.
More blood drawn today for the follow up tests. We await word about progress in being seen at MD Anderson. Our oncologist feels this is the best place for an accurate diagnosis and quick entrée to a treatment program as they see people from all over the world with weird forms of cancer and have the latest information and programs available to deal with such rare situations. There is a good chance that at least some of the treatment can be arranged locally so that the stress of travelling and being away from home can be reduced.
The plot thickens. I've always loved a good mystery ... now I AM one! Next chapter as soon as we have information or results.
Thank you all for your positive energy, your prayers and affirmations.
Copyright 2006
Our oncologist reviewed the results of the tests done last week. The octreotide scan came up normal all around. The urine analysis was negative for the tested component. The blood work came up elevated for colon/gastrointestinal and thyroid cancer; normal all other. The thyroid ultrasound shows cystic areas. Put together, an inconclusive picture.
At this point, we will do additional bloodwork to investigate two possibilities: 1) Medullary carcinoma of the thyroid (a slow growing tumor), and 2) Neuro endocrine tumor of the pancreas.
The bloodwork results will determine whether to do a biopsy of my thyroid. Our Oncologist will submit these and all prior findings to the MD Anderson specialists who have the techniques, technology and experience to sort through these mixed results and call for further diagnostic work-ups and/or determine a final diagnosis as a foundation for a treatment plan. He is pressing for an early review, not only to get an answer for us as soon as possible, but also because MD Anderson is beginning a research program in January for a new medicine (serafamib) that could apply to my situation if in fact the thyroid diagnosis is confirmed. At present there is no standard treatment plan for this type of thyroid cancer. The good news is that this is a slow growing type of cancer.
More blood drawn today for the follow up tests. We await word about progress in being seen at MD Anderson. Our oncologist feels this is the best place for an accurate diagnosis and quick entrée to a treatment program as they see people from all over the world with weird forms of cancer and have the latest information and programs available to deal with such rare situations. There is a good chance that at least some of the treatment can be arranged locally so that the stress of travelling and being away from home can be reduced.
The plot thickens. I've always loved a good mystery ... now I AM one! Next chapter as soon as we have information or results.
Thank you all for your positive energy, your prayers and affirmations.
Copyright 2006
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