Confronting Pancreatic Cancer

Milo's Corner
Whipple Survivor Research
on the special medical problems of long-term survivors *

This section is intended for the contribution by and the benefit of Whipple Survivors of pancreatic cancer who may contribute to the information here and hopefully benefit from others' experience. Also this section is an experiment - as survivors we have to provide our own research. It will be interesting to see if it works and how it might work. My name is Milo Wolff.

As survivors, we are a group so small that there is relatively little known about our medical problems. Thus, there is little data available to our medical teams about the unique consequences of the after-effects of the Whipple operation.

You have lost your auto pilot! Every survivor of the Whipple operation should realize they have lost most of the body’s natural food regulation system. You yourself are now the pilot. You have to make decisions yourself on how much to eat, to absorb and to digest food. Why is this so? Because the valve of your stomach (pylorus) may have been removed, and; The valve action of your liver bile duct (for digestive enzymes) has been in-activated, and; The valve of the pancreas (digestive enzymes) has been removed. Suppose all the valves in your house were cut out? You would have to find a way to regulate flows &SHY; quickly.

Most survivors regulate their food intake by eating many small meals to make use of the continual gastric and bile fluid flow. They add pancreatic enzymes to their food, like ‘Pan-0-Cap’ and other brands. When not having meals at night, you can drink liquid foods like ‘Ensure’ and other brands. Some survivors cannot absorb iron or vitamin B12 and need IV supplements. Gas production in the colon needs to be controlled; sometimes yogurt helps. A middle route between constipation and diarrhea has to be found.

Each survivor has to find out what works best with the advice of his medical team and develop new habits. But you are now the pilot and there is no flight map! Unfortunately there is very little research on digestion for Whipple survivors because there are so few of us.

My hope is that we can help to provide our own research here. We will try to benefit in this by trying to learn how to survive longer. So, I am asking every survivor to contribute what they can from their own experience, surgery, hospital and physician. If you will submit your experiences - I will try to add them as we go. This procedure might proceed as follows.

Data on this page will be added as survivors learn about their own Whipple medical problems. Old and new survivors are asked to send information about their problems to Milo.wolff@QuantumMatter.com.

I will summarize and add it to this section. If you have more data or disagree with data, please do inform me. Eventually, it is my aim that this section may become its own free-standing website - one that everyone in the world can refer to. Please provide the data to me in the format shown below and note if it is new data. Does anyone know/have data on Whipple cases that did not survive? If so, please send it on.

Data is not always complete from each survivor. Errors may occur, but we will try our best to be precise and accurate. The data are divided into two categories:
Repeated problems: Those problems that occur to two or more survivors. And, Possible problems: Those that have occurred in only one survivor (thus far, to our count).

Numbers inside the parentheses brackets represent the number of survivors who have reported these problems to me.

The remedies given are not meant to be medical advice. They are just my non-professional thoughts on the subjects (including yours). Any and all ideas expressed here need to be run past your own physicians and medical team.

One-to-Three Year Survivors (13)

A. Repeated problems:

Loss of weight (8). probable cause: Loss of enzymes from pancreas, loss of necessary bio-chemicals from the stomach, and loss of absorption sites in the missing duodenum and small intestine. Remedy: Food supplements like 'Ensure'.

Gas generation, diarrhea, constipation. (7). probable cause: Incomplete digestion, especially fat, due to above. Remedy: Eat smaller and 4-5 meals per day. Eat psyllium seed and other bulk food. Take pancreatic enzyme pills (7) like 'Pano-cap, CrecarbMS-16, Pancrease. Eat steak and beer (1). Check that there is no overgrowth of methane bacteria population in colon (1).

Uncontrolled stomach acid (9) Use Prilosec, Nexium, Prevacid, Zantac.

Infections: (3) Cholangitis of bile duct. Gut. Bacteria unstated. Multiple locations: Staphlococcus Aurius (1).

Pancreatic cancer detected before Whipple began: (2). After: (10).

B. Possible problems:

Loss of motility of food flow (2): Peristalsis in stomach and ileum has decreased as shown by x-rays. Enlarged stomach resulting in regurgitation of food retained in stomach.

Weight loss (2). No weight loss (1): 200 lb steady.

CAT19-9: less than 40 (4). Increased to 200, 500, 1000 at 2, 5 months but scans showed nothing (1).

Radiation + Chemo after Whipple (8)

Radiation + Chemo before Whipple (4)

Anemia from iron loss (1)

Diabetes (1)

Three-to-Five Year Survivors (5)

A. Repeated problems:

Iron loss anemia (2) probable cause: Depletion of stored iron in body (about 3-4 years) iron. remedy: iron supplementation.

Loss of motility of food flow (2): probable cause: Peristalsis in stomach and ileum has decreased as shown by x-rays. This results in regurgitation of food retained in stomach. remedy: Eat smaller, softer and 4-5 meals per day, lots of soup, chew fully.

Bleeding at: Whipple connection joints. (2) probable cause: Colon (1) replaced with piece of ileum.

Low fat absorption (1)

Bacterial over-growth (1) "Superbug": treated with antibiotic Xifaxin.

Hernia (1)

B. Possible problems:

Peripheral nerve illness(1): tingling in hands/fingers/toes, swelling of hands and ankles, aching muscles. probable cause: ? remedy: Prednisone + colchicine ?

Six-to-Ten Year Survivors (3)

A. Repeated problems:

B. Possible problems:

Continued bile system infection (1) Cholangitis of bile duct

Tumor elsewhere: Kidney (1)

Appetite OK (1)

Milo Wolff is a long-term pancreatic cancer survivor and a principal contributor to and the architect of Milo's Corner. He is not affiliated with the Lorenzen Cancer Foundation. Milo is the author of the book Exploring the Physics of the Unknown Universe.

Milo.wolff@QuantumMatter.com

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	Milo's Corner Whipple Survivor Research on the special medical problems of long-term survivors * This section is intended for the contribution by and the benefit of Whipple Survivors of pancreatic cancer who may contribute to the information here and hopefully benefit from others' experience. Also this section is an experiment - as survivors we have to provide our own research. It will be interesting to see if it works and how it might work. My name is Milo Wolff. As survivors, we are a group so small that there is relatively little known about our medical problems. Thus, there is little data available to our medical teams about the unique consequences of the after-effects of the Whipple operation. You have lost your auto pilot! Every survivor of the Whipple operation should realize they have lost most of the body’s natural food regulation system. You yourself are now the pilot. You have to make decisions yourself on how much to eat, to absorb and to digest food. Why is this so? Because the valve of your stomach (pylorus) may have been removed, and; The valve action of your liver bile duct (for digestive enzymes) has been in-activated, and; The valve of the pancreas (digestive enzymes) has been removed. Suppose all the valves in your house were cut out? You would have to find a way to regulate flows &SHY; quickly. Most survivors regulate their food intake by eating many small meals to make use of the continual gastric and bile fluid flow. They add pancreatic enzymes to their food, like ‘Pan-0-Cap’ and other brands. When not having meals at night, you can drink liquid foods like ‘Ensure’ and other brands. Some survivors cannot absorb iron or vitamin B12 and need IV supplements. Gas production in the colon needs to be controlled; sometimes yogurt helps. A middle route between constipation and diarrhea has to be found. Each survivor has to find out what works best with the advice of his medical team and develop new habits. But you are now the pilot and there is no flight map! Unfortunately there is very little research on digestion for Whipple survivors because there are so few of us. My hope is that we can help to provide our own research here. We will try to benefit in this by trying to learn how to survive longer. So, I am asking every survivor to contribute what they can from their own experience, surgery, hospital and physician. If you will submit your experiences - I will try to add them as we go. This procedure might proceed as follows. Data on this page will be added as survivors learn about their own Whipple medical problems. Old and new survivors are asked to send information about their problems to Milo.wolff@QuantumMatter.com. I will summarize and add it to this section. If you have more data or disagree with data, please do inform me. Eventually, it is my aim that this section may become its own free-standing website - one that everyone in the world can refer to. Please provide the data to me in the format shown below and note if it is new data. Does anyone know/have data on Whipple cases that did not survive? If so, please send it on. Data is not always complete from each survivor. Errors may occur, but we will try our best to be precise and accurate. The data are divided into two categories: Repeated problems: Those problems that occur to two or more survivors. And, Possible problems: Those that have occurred in only one survivor (thus far, to our count). Numbers inside the parentheses brackets represent the number of survivors who have reported these problems to me. The remedies given are not meant to be medical advice. They are just my non-professional thoughts on the subjects (including yours). Any and all ideas expressed here need to be run past your own physicians and medical team. One-to-Three Year Survivors (13) A. Repeated problems: Loss of weight (8). probable cause: Loss of enzymes from pancreas, loss of necessary bio-chemicals from the stomach, and loss of absorption sites in the missing duodenum and small intestine. Remedy: Food supplements like 'Ensure'. Gas generation, diarrhea, constipation. (7). probable cause: Incomplete digestion, especially fat, due to above. Remedy: Eat smaller and 4-5 meals per day. Eat psyllium seed and other bulk food. Take pancreatic enzyme pills (7) like 'Pano-cap, CrecarbMS-16, Pancrease. Eat steak and beer (1). Check that there is no overgrowth of methane bacteria population in colon (1). Uncontrolled stomach acid (9) Use Prilosec, Nexium, Prevacid, Zantac. Infections: (3) Cholangitis of bile duct. Gut. Bacteria unstated. Multiple locations: Staphlococcus Aurius (1). Pancreatic cancer detected before Whipple began: (2). After: (10). B. Possible problems: Loss of motility of food flow (2): Peristalsis in stomach and ileum has decreased as shown by x-rays. Enlarged stomach resulting in regurgitation of food retained in stomach. Weight loss (2). No weight loss (1): 200 lb steady. CAT19-9: less than 40 (4). Increased to 200, 500, 1000 at 2, 5 months but scans showed nothing (1). Radiation + Chemo after Whipple (8) Radiation + Chemo before Whipple (4) Anemia from iron loss (1) Diabetes (1) Three-to-Five Year Survivors (5) A. Repeated problems: Iron loss anemia (2) probable cause: Depletion of stored iron in body (about 3-4 years) iron. remedy: iron supplementation. Loss of motility of food flow (2): probable cause: Peristalsis in stomach and ileum has decreased as shown by x-rays. This results in regurgitation of food retained in stomach. remedy: Eat smaller, softer and 4-5 meals per day, lots of soup, chew fully. Bleeding at: Whipple connection joints. (2) probable cause: Colon (1) replaced with piece of ileum. Low fat absorption (1) Bacterial over-growth (1) "Superbug": treated with antibiotic Xifaxin. Hernia (1) B. Possible problems: Peripheral nerve illness(1): tingling in hands/fingers/toes, swelling of hands and ankles, aching muscles. probable cause: ? remedy: Prednisone + colchicine ? Six-to-Ten Year Survivors (3) A. Repeated problems: B. Possible problems: Continued bile system infection (1) Cholangitis of bile duct Tumor elsewhere: Kidney (1) Appetite OK (1) Milo Wolff is a long-term pancreatic cancer survivor and a principal contributor to and the architect of Milo's Corner. He is not affiliated with the Lorenzen Cancer Foundation. Milo is the author of the book Exploring the Physics of the Unknown Universe. Milo.wolff@QuantumMatter.com


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