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
Tuesday, January 30, 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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