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marvinjsturing
@marvinjsturing

Posts: 36
Joined: Jun 27, 2018

Pancreatic enzyme replacement

Posted by @marvinjsturing, Fri, Jul 13 11:10am

I am a 4 year survivor of pancreatic cancer. I have been on creon since my Whipple. It is very expensive. I talked to someone who was using Pure Encapsulation instead of creon. The formula doesn't match my creon, but it is about 1/4 the cost of the co-play on creon. What are other survivors doing about pancreatic enzymes replacement?

REPLY

Hello @marvinjsturing

I see that you are a relatively new member to Connect. Congratulations on being a four year survivor of pancreatic cancer! If you care to share more, would you mind sharing at what stage your cancer was when diagnosed and what symptoms led to the diagnosis?

I hope that other members who have used Creon or Pure Encapsulation will respond to your request for more information. I would like to invite a fellow Mentor, Gary @gman007 to join in this conversation. As he has had pancreatitis and might be able to offer some more ideas and also invite others to join.

I look forward to hearing from you again, Marvin.

Teresa

I don't understand the whipple procedure, can anyone please explain in non medical terms

@patti1952

I don't understand the whipple procedure, can anyone please explain in non medical terms

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Hello @patti1952

I see that this is just your second post on Mayo Connect – welcome!

Unfortunately, there is no non-medical way to explain a Whipple Procedure as it is a surgical procedure that removes part of the pancreas, duodenum and other parts of the intestinal tract. Mayo Clinic offers a fairly easy to understand description on their website. Here is the link, https://www.mayoclinic.org/tests-procedures/whipple-procedure/about/pac-20385054

As you can see from the description, it is used to treat tumors in the pancreas, duodenal and other parts of the digestive tract and it is a difficult and demanding surgery.

What is your specific interest in the Whipple Procedure? Do you know of someone who will be having this type of surgery?

I look forward to hearing from you again.

Teresa

@hopeful33250

Hello @marvinjsturing

I see that you are a relatively new member to Connect. Congratulations on being a four year survivor of pancreatic cancer! If you care to share more, would you mind sharing at what stage your cancer was when diagnosed and what symptoms led to the diagnosis?

I hope that other members who have used Creon or Pure Encapsulation will respond to your request for more information. I would like to invite a fellow Mentor, Gary @gman007 to join in this conversation. As he has had pancreatitis and might be able to offer some more ideas and also invite others to join.

I look forward to hearing from you again, Marvin.

Teresa

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I was diagnosed as IIb. Symptoms were nausea, diarrhea, and I was unable to control my blood sugar (I was Type II diabetic.) The mass on my pancreas was the size of a small grapefruit. The surgeon removed my duodenum, 1/3 of my stomach and most of my pancreas. What was left of my pancreas after surgery was so bad that the surgeon did not re-attach it to the digestive system. Cancer was found in one lymph node, thus the IIb diagnoses. After surgery, i had 6 months of chemo. I had a very rare reaction to the chemo and developed a disease that damaged my kidneys. I now have stage 5 chronic kidney disease.

I had a Whipple at Mayo Clinic nearly 12 years ago and have been on a number of different pancreatic enzymes over the years. I currently taking Creon, but it’s so incredibly expensive. I’d love to hear more about the Pure Encapsulation.

Hello @tracyweis

I appreciate your addition to this conversation! @patti1952 asked for some help understanding what a Whipple procedure is. Since you have had one yourself, could you provide a little information to let her know the reason for the procedure and how it worked for you?

I look forward to hearing from you again.

Teresa

@hopeful33250

Hello @marvinjsturing

I see that you are a relatively new member to Connect. Congratulations on being a four year survivor of pancreatic cancer! If you care to share more, would you mind sharing at what stage your cancer was when diagnosed and what symptoms led to the diagnosis?

I hope that other members who have used Creon or Pure Encapsulation will respond to your request for more information. I would like to invite a fellow Mentor, Gary @gman007 to join in this conversation. As he has had pancreatitis and might be able to offer some more ideas and also invite others to join.

I look forward to hearing from you again, Marvin.

Teresa

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Hello @marvinjsturing

You mentioned you were diagnosed "LLB" what does that mean exactly? How long ago was your surgery? How are you feeling now? Is your blood sugar under better control?

Marvin, I wish you well and I hope to hear from you again.

Teresa

@hopeful33250

Hello @marvinjsturing

I see that you are a relatively new member to Connect. Congratulations on being a four year survivor of pancreatic cancer! If you care to share more, would you mind sharing at what stage your cancer was when diagnosed and what symptoms led to the diagnosis?

I hope that other members who have used Creon or Pure Encapsulation will respond to your request for more information. I would like to invite a fellow Mentor, Gary @gman007 to join in this conversation. As he has had pancreatitis and might be able to offer some more ideas and also invite others to join.

I look forward to hearing from you again, Marvin.

Teresa

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Hello @hopeful33250

I was using Roman numerals. I was diagnosed as stage 2b. I had my surgery just over 4 years ago. I am feeling great. I just get tired very quickly. Since they removed most of my pancreas during surgery, I am now a Type I diabetic and control my blood sugar with insulin.

Marvin

@patti1952

I don't understand the whipple procedure, can anyone please explain in non medical terms

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Hello @patti1952

The Whipple procedure was developed by a Dr. Whipple back in the 1930's. It is a surgery for early stage pancreatic cancer patients.. (Although doctors at Mayo are developing procedures that are allowing them to successfully do surgery on patients with more advanced stages now.) In a typical Whipple, the surgeon removes the cancerous tumor from the pancreas, the duodenum, the gall bladder and part of the stomach. The surgeon then attaches the stomach and the pancreas to the small intestine.

In my case, I had already had gall bladder surgery, so the surgeon removed my duodenum, 1/3 of my stomach and most of my pancreas. What was left of my pancreas was so bad that the surgeon did not attach it to the digestive system. The pancreas makes insulin and digestive enzymes. I am now a Type I diabetic and I have to get the digestive enzymes in capsules every time I eat.

If you have any other questions, let me know and I will try to answer them.

Marv

@patti1952

I don't understand the whipple procedure, can anyone please explain in non medical terms

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Thank you so much but my partner has stage 4 pancreatic cancer that has metastasized to his hip bone. No one had suggested surgery just the radiation to the hip and chemo which he had to stop it caused a heart attack and had left him weaker then the start. They don't understand anything about him or why he is still alive for that matter.

@patti1952

I don't understand the whipple procedure, can anyone please explain in non medical terms

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Hello @pattie1952

When was your partner diagnosed?

Here is a link to the article I was talking about: https://advancingthescience.mayo.edu/2018/07/02/a-revolution-in-pancreatic-cancer-treatment/

@patti1952

I don't understand the whipple procedure, can anyone please explain in non medical terms

Jump to this post

Hello @patti1952

I am so sorry to hear of your partner's diagnosis. That is so unfortunate.

Teresa

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