1. < Pancreatic Cancer

Total Pancreatectomy

Posted by Luckyone4321 @luckyone4321, Jan 25, 2020

Hello everyone! I am brand new to this site so please bear with me! I am a 31 year old female and here is my story and questions...in 2010 I had a benign tumor removed off of the tail of my pancreas without any problems, in 2017 I had a malignant tumor on the head of my pancreas and had to have a Whipple Procedure, and not even 6 months later the cancer had spread to the rest of my pancreas and I had Pancreatic Cancer. I didn't have time to do chemo or radiation, a total pancreatectomy was my only option. They removed my entire pancreas, gall bladder, spleen, some of my stomach, and some of my small intestine (Duodenum). Recovery wasn't easy, especially adapting to now being a Type 1 Diabetic and having to take pancreatic enzymes before eating anything just to be able to digest any food. I had several complications following the Whipple and Total Pancreatectomy (as well as removing other organs). I am coming up on two years post op and I feel like I am still struggling! I suffer from severe fatigue, nausea/vomiting (causing me to lose over 20 pounds), diarrhea, stomach pain, and uncontrollable blood sugars. I have been searching the internet for someone "like me!" I have found people who have had the TPAIT procedure or a Distal Pancreatectomy but not a Total Pancreatectomy due to Pancreatic Cancer. I stumbled upon this page and I am hoping someone can give me some insight on what I'm going through. Since my pancreatectomy, every single time I eat I get sick and it has affected all aspects of my life including my relationships and my job. I lost my job due to my current health condition and am fighting hard to get disability, spending most of my days in bed (which is hard having a young child). Anyway, I take Creon with all of my food and am about to have a Gastric Emptying Test done to check for Gastroparesis or Dumping Syndrome. Has anyone had a total pancreatectomy and struggled so bad after the surgery? If so, did you ever really get your life back or did your body eventually get used to digesting food this way and did the constant stomach pain ever stop? My surgeon made it sound like I would absolutely have issues for at least one year after the surgery and that Gastroparesis was very likely but since they removed some of my stomach and a specific valve...I feel like I would have the opposite and have Dumping Syndrome. My apologies for such a long post and for jumping all over the place. If anyone has any recommendations or suggestions to possibly improve my quality of life, that would be much appreciated. I am desperate and looking for answers or wanting to find someone who can at least relate. Thank you for all of your help!

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

isaall888 | @isaall888 | Oct 24, 2022
In reply to @amandajro "Hello @isaall888 and welcome to Mayo Clinic Connect. I am very sorry to read about your..." + (show)
@amandajro

Hello @isaall888 and welcome to Mayo Clinic Connect. I am very sorry to read about your sister's diagnosis. How wonderful you are such a great advocate and support for her to join Connect.

You will notice that I have moved your post into an existing discussion on this same topic, which you can find here:
- Total Pancreatectomy: https://connect.mayoclinic.org/discussion/total-pancreatectomy/

I'd like to bring in members @mariouk @kjrita and @luckyone4321 who have been part of this discussion to see if they can offer you some support for your sister.

What was the anticipated recovery time shared with your sister by her surgeon?

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Thank you so much for responding. The doctors stated"months" since everyone heals differently. I just got a response from@kjrita. It was so reassuring to know there is light at the end of the tunnel. Thank you.

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isaall888 | @isaall888 | Oct 24, 2022
In reply to @kjrita "Hello. Today is my 4-year anniversary of my pancreatectomy, removal of spleen and part of my..." + (show)
@kjrita

Hello. Today is my 4-year anniversary of my pancreatectomy, removal of spleen and part of my stomach, along the first part of my intestine or the duodenum. It does get easier, but it took me a year of recovery to almost be back to normal in my digestion. After this surgery, I was in the hospital for 19 days. I had a feeding tube in my stomach. I was also receiving TPN or Total Parenteral Nutrition through my port during my hospital stay. I wasn't able to eat much, so this was my option for getting nutrition. I had to go home with my feeding tube and the TPN. They wanted me to eat 1200 calories a day before suspending this protocol. It was really difficult to eat because my insides were healing, and digestion hurt. I had a hard time eating. I definitely started losing a lot of weight. I didn't want to eat because it hurt every time I ate. I would recommend doing the best she can with eating, and I recommend medical marijuana which wasn't available when I was going through this. I had a friend that got some local honey that was infused with it, which definitely eased my pain, and I was able to eat more and start feeling normal. Maybe your sister would be willing to try some gummies?
I also would recommend that she makes sure she pays attention to the amount enzymes she is taking. That is a process to figure out. It's different for everyone. Now, I know how many I have to take when I eat, but I had to take the first amount recommended: 2-3 with meals. I now take 5 with meals and 7 if it is fatty food. I take 2-3 with snacks, but again it depends on when I last ate. The cramping and diarrhea are more than likely due to the fact that she is not taking enough enzymes. However, it also takes a while for the organs to heal. She should gradually start feeling better. It is a slow road it seems. On the other hand, I was grateful to be alive and get a second chance on life. Let me know if you have any other questions, I might be able to answer. It is wonderful that you are asking questions to help her through.

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Dear @kjrita, congratulations on your 4th year anniversary. I am so happy for you. This just proves one more time that it's all possible and that you are not a statistic. You did beat your cancer. The information you gave me was extremely helpful. We are going to start working on dosing the creon. Increasing food intake as tolerated and slowly heal. I dont know why We were expecting a quick and easy recovery but I know better now. It's going to be long and painful but totally worth it. There is light at the end of this long and difficult road. I will continue to update the group and share what is working for her. Hopefully I can help someone else like you just did for me. Thanks

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Mario | @mariouk | Oct 24, 2022

First of all I hope you are all well and heathy !

Thank God I never had to escalate my condition any further and I am on annual scans (my results are coming tomorrow) . I am glad you are doing better @kjrita .

@isaall888 I wish you all the best with your sister and I have heard that it will take time for your body to learn how to operate again. Unfortunately it won’t be an easy ride and your sister needs to stay strong and positive.

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mamarina | @mamarina | Oct 25, 2022
In reply to @luckyone4321 "I went to my doctor appointment today with a full list of questions and concerns and..." + (show)
@luckyone4321

I went to my doctor appointment today with a full list of questions and concerns and I get there and they tell me he had to do a operation and that they tried to call me to reschedule it but I never had a missed call! And now that doctor can’t get me in until March. I’m wondering if I should look into a different doctor? I was looking forward to maybe getting some answers today but until then I will increase my Creon and see if that helps!

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Any decent dr would arrange a virtual call or take an inquiry via email.

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abrownca | @abrownca | Oct 26, 2022
In reply to @kjrita "Hello. Today is my 4-year anniversary of my pancreatectomy, removal of spleen and part of my..." + (show)
@kjrita

Hello. Today is my 4-year anniversary of my pancreatectomy, removal of spleen and part of my stomach, along the first part of my intestine or the duodenum. It does get easier, but it took me a year of recovery to almost be back to normal in my digestion. After this surgery, I was in the hospital for 19 days. I had a feeding tube in my stomach. I was also receiving TPN or Total Parenteral Nutrition through my port during my hospital stay. I wasn't able to eat much, so this was my option for getting nutrition. I had to go home with my feeding tube and the TPN. They wanted me to eat 1200 calories a day before suspending this protocol. It was really difficult to eat because my insides were healing, and digestion hurt. I had a hard time eating. I definitely started losing a lot of weight. I didn't want to eat because it hurt every time I ate. I would recommend doing the best she can with eating, and I recommend medical marijuana which wasn't available when I was going through this. I had a friend that got some local honey that was infused with it, which definitely eased my pain, and I was able to eat more and start feeling normal. Maybe your sister would be willing to try some gummies?
I also would recommend that she makes sure she pays attention to the amount enzymes she is taking. That is a process to figure out. It's different for everyone. Now, I know how many I have to take when I eat, but I had to take the first amount recommended: 2-3 with meals. I now take 5 with meals and 7 if it is fatty food. I take 2-3 with snacks, but again it depends on when I last ate. The cramping and diarrhea are more than likely due to the fact that she is not taking enough enzymes. However, it also takes a while for the organs to heal. She should gradually start feeling better. It is a slow road it seems. On the other hand, I was grateful to be alive and get a second chance on life. Let me know if you have any other questions, I might be able to answer. It is wonderful that you are asking questions to help her through.

Jump to this post

Thank you for sharing your progress. I was diagnosed the first of the year and have been going through chemo and radiation. The surgeons have recommended a total pancreatectomy due to the location and involvement with arteries/veins. Although I know it's going to be a long and rougher road ahead, hearing how you have managed the last four years is very encouraging.

REPLY
kjrita | @kjrita | Oct 26, 2022

I am doing quite well. It took time to heal and to be patient with myself in my body, mind, will and emotions. I had to slowly surrender to wearing devices to successfully manage my blood sugar so that it was stable and not fluctuating so much. I wear a Dexcom G6 and use the older version of the Omnipod as my insulin pump. It's made it easier for me to manage, but it took time to adapt. I started with the G6 and about a year later adopted the insulin pump, but I have heard some people that jump right in. I am very methodical due to my analyst background, and I find it easier to not introduce too many things at one time. Here is a photo of me from a friend's summer party in August. If you look at my story on Mayo, you can see while I was doing well....I needed to get physically stronger again. You can do this! Your future is not written yet. Those are words that I live by. 🙂
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2 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 26, 2022
In reply to @kjrita "I am doing quite well. It took time to heal and to be patient with myself..." + (show)
@kjrita

I am doing quite well. It took time to heal and to be patient with myself in my body, mind, will and emotions. I had to slowly surrender to wearing devices to successfully manage my blood sugar so that it was stable and not fluctuating so much. I wear a Dexcom G6 and use the older version of the Omnipod as my insulin pump. It's made it easier for me to manage, but it took time to adapt. I started with the G6 and about a year later adopted the insulin pump, but I have heard some people that jump right in. I am very methodical due to my analyst background, and I find it easier to not introduce too many things at one time. Here is a photo of me from a friend's summer party in August. If you look at my story on Mayo, you can see while I was doing well....I needed to get physically stronger again. You can do this! Your future is not written yet. Those are words that I live by. 🙂

Jump to this post

Beautiful picture on you @kjrita. I hope you'll upload it to your profile. It is a snapshot of hope for fellow pancreatic cancer members.

REPLY
isaall888 | @isaall888 | Dec 13, 2022
In reply to @kjrita "Hello. Today is my 4-year anniversary of my pancreatectomy, removal of spleen and part of my..." + (show)
@kjrita

Hello. Today is my 4-year anniversary of my pancreatectomy, removal of spleen and part of my stomach, along the first part of my intestine or the duodenum. It does get easier, but it took me a year of recovery to almost be back to normal in my digestion. After this surgery, I was in the hospital for 19 days. I had a feeding tube in my stomach. I was also receiving TPN or Total Parenteral Nutrition through my port during my hospital stay. I wasn't able to eat much, so this was my option for getting nutrition. I had to go home with my feeding tube and the TPN. They wanted me to eat 1200 calories a day before suspending this protocol. It was really difficult to eat because my insides were healing, and digestion hurt. I had a hard time eating. I definitely started losing a lot of weight. I didn't want to eat because it hurt every time I ate. I would recommend doing the best she can with eating, and I recommend medical marijuana which wasn't available when I was going through this. I had a friend that got some local honey that was infused with it, which definitely eased my pain, and I was able to eat more and start feeling normal. Maybe your sister would be willing to try some gummies?
I also would recommend that she makes sure she pays attention to the amount enzymes she is taking. That is a process to figure out. It's different for everyone. Now, I know how many I have to take when I eat, but I had to take the first amount recommended: 2-3 with meals. I now take 5 with meals and 7 if it is fatty food. I take 2-3 with snacks, but again it depends on when I last ate. The cramping and diarrhea are more than likely due to the fact that she is not taking enough enzymes. However, it also takes a while for the organs to heal. She should gradually start feeling better. It is a slow road it seems. On the other hand, I was grateful to be alive and get a second chance on life. Let me know if you have any other questions, I might be able to answer. It is wonderful that you are asking questions to help her through.

Jump to this post

Thank you. Thank you again for sharing your journey. As you mentioned it is a slow healing process. My sister had so so good days and quite a few bad days. She eats a little better. Diarrhea is still a problem. She is still losing weight. One of my concern is her spirit. Her energy level is really low and her spirit is really low. I keep reminding her how lucky she is to have a second chance. That she even feel better after just two and a half months since the surgery is a miracle. The diabetes part is also difficult to handle the multiple shots throughout the day. The high glucose alarm the low glucose alarms all day all night. I can't wait for her to get the pump. All we can do is support her. Having this support group has given me a lot of strength and a lot of hope. Thank you again

REPLY
lucyh44 | @lucyh44 | Mar 31, 2023
In reply to @kjrita "I am doing quite well. It took time to heal and to be patient with myself..." + (show)
@kjrita

I am doing quite well. It took time to heal and to be patient with myself in my body, mind, will and emotions. I had to slowly surrender to wearing devices to successfully manage my blood sugar so that it was stable and not fluctuating so much. I wear a Dexcom G6 and use the older version of the Omnipod as my insulin pump. It's made it easier for me to manage, but it took time to adapt. I started with the G6 and about a year later adopted the insulin pump, but I have heard some people that jump right in. I am very methodical due to my analyst background, and I find it easier to not introduce too many things at one time. Here is a photo of me from a friend's summer party in August. If you look at my story on Mayo, you can see while I was doing well....I needed to get physically stronger again. You can do this! Your future is not written yet. Those are words that I live by. 🙂

Jump to this post

Hello @kjrita
Have you had an operation on 23/10/2018 at Mayo clinic by surgical oncologist Dr Mark Truty?
Did Mr Joel Streed publish your story "Aggressive Approach to Pancreatic Cancer Yields Outstanding Outcome" on 05/02/2020?
Would you mind to reply my question? Because I would like to make sure -you are the right person I am looking for.
I am living in Australia, I have the very similar problem on my pancreas like you had before, but I am 30 years older than you, I am looking for the right treatment.

REPLY
1 reply
kjrita | @kjrita | Apr 1, 2023
In reply to @lucyh44 "Hello @kjrita Have you had an operation on 23/10/2018 at Mayo clinic by surgical oncologist Dr..." + (show)
@lucyh44

Hello @kjrita
Have you had an operation on 23/10/2018 at Mayo clinic by surgical oncologist Dr Mark Truty?
Did Mr Joel Streed publish your story "Aggressive Approach to Pancreatic Cancer Yields Outstanding Outcome" on 05/02/2020?
Would you mind to reply my question? Because I would like to make sure -you are the right person I am looking for.
I am living in Australia, I have the very similar problem on my pancreas like you had before, but I am 30 years older than you, I am looking for the right treatment.

Jump to this post

Yes. That's my story. https://newsnetwork.mayoclinic.org/discussion/aggressive-approach-to-pancreatic-cancer-yields-outstanding-outcome/

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