What is it like after Whipple surgery plus 1 1/2 years?

Posted by dakotarunner @dakotarunner, Aug 16, 2020

Hello to everyone! I have not posted on this site for some time, but realize there are continually those folks who are facing pancreatic cancer, and wonder what post Whipple surgery is like. I know each of us gets over it in a different way, but will run what my last 1 1/2 years have been. I had surgery at Mayo in Rochester on 2/8/19. Made the mistake of eating too much when I went back on solid food ( I had not had any food by mouth since 1/3/19). Big mistake, but I survived. I started chemo about 9 weeks afterward (Folfirinox). After I got to the sixth treatment I was ready to quit, but my wife (God bless her) talked me into sticking it out. It was not fun.It beat the snot out of me physically, emotionally and mentally , but I finished the 12 sessions. It took me about 6 -7 weeks to get over the effects. I was told that this recover times varies greatly among people in treatment. Went to Vegas in December for the NFR and some concerts and felt great.

The main downside of the Whipple was, and still is in my bowel habits. Sometimes things go well, other times I only get ab out a 5 -10 second warning after the first urge until the movement. There have been some messy pants, and some tears were shed the first few times it happened, but with time, things have gotten better. I have started taking Gas-Ex, and it seems to be making a big difference for me. I also take Creon with my meals. No foods seem to upset me, and I eat like a horse. I had lost around 50 pounds during the illness and post surgery, but have been able to gain about 22 pounds back. Still working on another 10 pounds. I am semi-retired, working 3 days a week, and on my off days, keep as active as I ever did with the homeowner activities of owning an acreage and a number of horses. Only changes are I am not as strong as I was before cancer, and I have been know to take a nap now and then.

What I would like to say to people facing pancreatic cancer is that it will not be easy. I was so sick for the month before surgery that mentally I was a wimp. If I had to go thru it again, I would be in a more ready and positive state of mind. As far as the chemo, if I have to do that again, I will, only this time in a better mindset, and realizing it would knock me on my ass for a while.

When people ask me how I feel, I tell them that I feel really, really good, which is the truth. I have been one of the lucky ones when it comes to pancreatic cancer. 2019 was not the best year I have ever had, but I truly feel it was a blessing. For those facing pancreatic I can only say be as positive as possible. I know this easy to say and hard to do, Readily accept the prayers for you, and also to accept help when offered. It will be a rough road, but stay positive. Like my Doctor at Mayo told me "I was one of the lucky 20%". I thought lucky hell! Then he added that I was one of the lucky ones who could have surgery. It sure changed my mind in a hurry.

Best to all who read this, and prayers to all.

 

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

Hoping things have greatly improved for you since this posting. I am new to this forum. My husband is currently going through the same regime you previously had. He is about to have his 4th round soon and we are looking for any solutions to resolve his extreme lack of desire to eat since starting the Chemo treatments. So much weight loss and mixed emotions as he too was told he is one of the lucky ones able to have the Whipple. This whole thing feels like a train wreck. Thank you for sharing your story for all of us. God Bless you and your family🙏

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@susandc

Thanks Dakota, yes, it's hard to remain positive when you read scientific papers that describe pancreatic cancer as a particularly "deadly" form of cancer. I'm not one of the lucky ones in that I am not a surgical candidate since there is metastasis to the liver. Nor could I tolerate folfirinox, but I had 18 months of chemo with various combinations with good control of tumor growth. I think this experience has taught me to enjoy life moment to moment and not have to have everything planned. I think digestive system cancer is a whole different animal and I've been very disappointed in the nutritionists' information and advice. I'm still doing more digging on that, but I also don't want to spend too much time researching about my disease. I just want to live and enjoy life, knowing my days are numbered. I admire you having horses whom I consider great healers, but I know how labor intensive that is. I'm very fortunate to have a couple friends with horses who are generous to let me come and groom or just hang out with the herd. Standing near a horse is in itself a lesson in mindfulness. Thanks for sharing your journey.

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My horse Tucker definitely got me through my chemo and radiation and subsequent whipple surgery. My goal after each chemo was to get to the barn to just hug on him and brush him and eventually ride him. We were jumping fences between treatments in no time because they are healers. I truly believe that too! He knew something was wrong with me and would just stand there and let me hug him. My barn family was also so supportive encouraging me to get out to the barn. I have lost 20 pounds mostly all muscle. I was in good shape before surgery and now am working to figure out my new digestion and gain back at least 15 pounds. I am down to 100 pounds. Working on how much Imodium AD and how many enzymes. I get tons of gas with broccoli so no broccoli. I stay away from all soda. It’s only been 7 months since surgery and am so blessed to have clean scans. It’s been 15 months since diagnosis.
Going to ride my horse tomorrow! Love to all!
My mother died from pancreatic cancer in her 70s. I should have done more to protect myself although I did catch it early but only after going through three Drs who wanted to give me anxiety drugs, physical therapy and well just eat more fiber! I didn’t give up and found a Dr who did blood showed high liver enzymes which got me an ultra sound (they thought it was my gallbladder) I finally got an MRCP revealing pancreatic cancer adenocarcinoma on the head of my pancreas. If I hadn’t advocated for myself I wouldn’t be here today. Never give up!

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@nvan22

My horse Tucker definitely got me through my chemo and radiation and subsequent whipple surgery. My goal after each chemo was to get to the barn to just hug on him and brush him and eventually ride him. We were jumping fences between treatments in no time because they are healers. I truly believe that too! He knew something was wrong with me and would just stand there and let me hug him. My barn family was also so supportive encouraging me to get out to the barn. I have lost 20 pounds mostly all muscle. I was in good shape before surgery and now am working to figure out my new digestion and gain back at least 15 pounds. I am down to 100 pounds. Working on how much Imodium AD and how many enzymes. I get tons of gas with broccoli so no broccoli. I stay away from all soda. It’s only been 7 months since surgery and am so blessed to have clean scans. It’s been 15 months since diagnosis.
Going to ride my horse tomorrow! Love to all!
My mother died from pancreatic cancer in her 70s. I should have done more to protect myself although I did catch it early but only after going through three Drs who wanted to give me anxiety drugs, physical therapy and well just eat more fiber! I didn’t give up and found a Dr who did blood showed high liver enzymes which got me an ultra sound (they thought it was my gallbladder) I finally got an MRCP revealing pancreatic cancer adenocarcinoma on the head of my pancreas. If I hadn’t advocated for myself I wouldn’t be here today. Never give up!

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Your story is an inspiration. Thanks for sharing it!!!

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You are welcome! It’s been quite the journey.
I am very curious about the vaccine. Wonder if it will be the catalyst to get more focus on PC research.

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@nvan22

You are welcome! It’s been quite the journey.
I am very curious about the vaccine. Wonder if it will be the catalyst to get more focus on PC research.

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Hello
Thank you for your story.
I am one of the lucky ones that have the option of a Whipple surgery.
I was diagnosed on February 20,2023.
I’ve had 5 rounds of Folfirinox and feeling good so far.
I may have 3 to 8 more rounds before a Whipple surgery.

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Wow, I can't believe it has taken me this long to look online about pancreatic cancer and the Whipple. I had my Whipple 02/06/2014. Over 9 years post whipple, I am considered cured. Cured is not a word used by any of the doctors you will meet during this journey and mine even told me that I would NEVER be cured, the best we could hope for was remission. Well, who said you can't do anything if you set your mind to it and trust in God. OK, so my story is that my husband and I had just moved into a new home October 2013. I was expecting my first grandchildren, twins, on 1/9/2014. My focus was the holidays and the babies! I was not feeling well. I was itching all over my whole body, my eyes, inbetween my toes, you name it. Unbearable, but I pushed on. I emptied all the moving boxes, I got through Thanksgiving and then Christmas and then I just felt so horrible I started to feel like nothing would change. I met my new babies and immediately went to my Primary Care Physcian and he said, this doesnt sound right. He didnt just throw Benedryl at me and say deal with it...no he ordered blood tests and a CT Scan. He called me after the CT and told me that there was a mass on my pancreas and that it was blocking my bile duct. This is why I had such intense itching. Thank the Lord for the itching, which saved my life. Most have no symptoms. He scheduled a biopsy and a process to put a stent in to release the bile and stop the itching. I was literally ripping my skin off all day and night. It was horrible. I went in to have the procedure on 1/21/2014 and on 1/27/2014 I met with a man who to this day I have never spoken to again. He was I believe an oncologist type, but I will never forget what he said to me. My husband and I were sitting in front of him, like in the movies, and he said, "Well you know you have Cancer right? It is stage 3 and you have about 4 months to live. I recommend surgery immediately" I was in shock. What is happening, but mainly I got mad! We left and I called my doctor and he advised me to meet with a surgeon who turned out to be one of the most important people in my life. I was 54 years old and she said, Mrs. XXXXX, you will live a long life and see those babies grow. I didn't know any better than to believe her, because honestly, I didn't look online at ANYTHING. My husband did, but didn't share at my request. I didn't look online because she asked me not to. I was scheduled for 2/6/2014 for my Whipple. My process was very very fast. The weekend before surgery, I wrote letters to my 4 adult children and my husband. I put my affairs in order and I had surgery. As anyone knows after this surgery, you can't remember everything, but I was in the ICU for 12 days. On day 7, my surgeon came in and told me that the cancer had spread to my lymph nodes. She had removed 23 and 3 had shown cancer, so I would need 6 months of chemo. I had nothing by mouth for 9 days and I was told it would be months before I could return to work. I got through the surgery and when I went home, I had the tubes coming out of my stomach and pancreas. I was a size 00 when I left. I had nothing through the surgical implanted feeding tube while in the hospital. Many may not want to hear this, but my faith and my constant connection with Christ during this process was my saving grace. I was smiling and optimistic. I returned to work post whipple after 7 weeks. I started chemo 3 days later on 4/1/14. I am not trying to talk myself up at all, I just want to give strength and encouragement to those who are facing this horrible diagnosis. I now have 5 grandchildren. The twins are 9, I also have two 8 year old and one 5 year old grandson. My husband committed suicide 1/15/22, 1 day before out 40th wedding anniversary, so I guess I am here for a reason. Not sure exactly what that is yet. I have talked to many with cancer about being positive and not giving up, but when I lost my husband, I wasn't sure what to think anymore. Anyway, I am so thankful to be alive and pray for anyone going through this very intense life journey.

REPLY
@lynette21460

Wow, I can't believe it has taken me this long to look online about pancreatic cancer and the Whipple. I had my Whipple 02/06/2014. Over 9 years post whipple, I am considered cured. Cured is not a word used by any of the doctors you will meet during this journey and mine even told me that I would NEVER be cured, the best we could hope for was remission. Well, who said you can't do anything if you set your mind to it and trust in God. OK, so my story is that my husband and I had just moved into a new home October 2013. I was expecting my first grandchildren, twins, on 1/9/2014. My focus was the holidays and the babies! I was not feeling well. I was itching all over my whole body, my eyes, inbetween my toes, you name it. Unbearable, but I pushed on. I emptied all the moving boxes, I got through Thanksgiving and then Christmas and then I just felt so horrible I started to feel like nothing would change. I met my new babies and immediately went to my Primary Care Physcian and he said, this doesnt sound right. He didnt just throw Benedryl at me and say deal with it...no he ordered blood tests and a CT Scan. He called me after the CT and told me that there was a mass on my pancreas and that it was blocking my bile duct. This is why I had such intense itching. Thank the Lord for the itching, which saved my life. Most have no symptoms. He scheduled a biopsy and a process to put a stent in to release the bile and stop the itching. I was literally ripping my skin off all day and night. It was horrible. I went in to have the procedure on 1/21/2014 and on 1/27/2014 I met with a man who to this day I have never spoken to again. He was I believe an oncologist type, but I will never forget what he said to me. My husband and I were sitting in front of him, like in the movies, and he said, "Well you know you have Cancer right? It is stage 3 and you have about 4 months to live. I recommend surgery immediately" I was in shock. What is happening, but mainly I got mad! We left and I called my doctor and he advised me to meet with a surgeon who turned out to be one of the most important people in my life. I was 54 years old and she said, Mrs. XXXXX, you will live a long life and see those babies grow. I didn't know any better than to believe her, because honestly, I didn't look online at ANYTHING. My husband did, but didn't share at my request. I didn't look online because she asked me not to. I was scheduled for 2/6/2014 for my Whipple. My process was very very fast. The weekend before surgery, I wrote letters to my 4 adult children and my husband. I put my affairs in order and I had surgery. As anyone knows after this surgery, you can't remember everything, but I was in the ICU for 12 days. On day 7, my surgeon came in and told me that the cancer had spread to my lymph nodes. She had removed 23 and 3 had shown cancer, so I would need 6 months of chemo. I had nothing by mouth for 9 days and I was told it would be months before I could return to work. I got through the surgery and when I went home, I had the tubes coming out of my stomach and pancreas. I was a size 00 when I left. I had nothing through the surgical implanted feeding tube while in the hospital. Many may not want to hear this, but my faith and my constant connection with Christ during this process was my saving grace. I was smiling and optimistic. I returned to work post whipple after 7 weeks. I started chemo 3 days later on 4/1/14. I am not trying to talk myself up at all, I just want to give strength and encouragement to those who are facing this horrible diagnosis. I now have 5 grandchildren. The twins are 9, I also have two 8 year old and one 5 year old grandson. My husband committed suicide 1/15/22, 1 day before out 40th wedding anniversary, so I guess I am here for a reason. Not sure exactly what that is yet. I have talked to many with cancer about being positive and not giving up, but when I lost my husband, I wasn't sure what to think anymore. Anyway, I am so thankful to be alive and pray for anyone going through this very intense life journey.

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So sorry to hear about your loss. Wonderful to hear your survival story. Please pray for me - I have been praying for remission. I had chemo then Whipple; infection and slow recovery. No chemo post Whipple due to infection even though I had positive lymph nodes. Pray for continued healing please - I am. All second opinions aligned with it’s too late past surgery for more chemo.

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@lynette21460

Wow, I can't believe it has taken me this long to look online about pancreatic cancer and the Whipple. I had my Whipple 02/06/2014. Over 9 years post whipple, I am considered cured. Cured is not a word used by any of the doctors you will meet during this journey and mine even told me that I would NEVER be cured, the best we could hope for was remission. Well, who said you can't do anything if you set your mind to it and trust in God. OK, so my story is that my husband and I had just moved into a new home October 2013. I was expecting my first grandchildren, twins, on 1/9/2014. My focus was the holidays and the babies! I was not feeling well. I was itching all over my whole body, my eyes, inbetween my toes, you name it. Unbearable, but I pushed on. I emptied all the moving boxes, I got through Thanksgiving and then Christmas and then I just felt so horrible I started to feel like nothing would change. I met my new babies and immediately went to my Primary Care Physcian and he said, this doesnt sound right. He didnt just throw Benedryl at me and say deal with it...no he ordered blood tests and a CT Scan. He called me after the CT and told me that there was a mass on my pancreas and that it was blocking my bile duct. This is why I had such intense itching. Thank the Lord for the itching, which saved my life. Most have no symptoms. He scheduled a biopsy and a process to put a stent in to release the bile and stop the itching. I was literally ripping my skin off all day and night. It was horrible. I went in to have the procedure on 1/21/2014 and on 1/27/2014 I met with a man who to this day I have never spoken to again. He was I believe an oncologist type, but I will never forget what he said to me. My husband and I were sitting in front of him, like in the movies, and he said, "Well you know you have Cancer right? It is stage 3 and you have about 4 months to live. I recommend surgery immediately" I was in shock. What is happening, but mainly I got mad! We left and I called my doctor and he advised me to meet with a surgeon who turned out to be one of the most important people in my life. I was 54 years old and she said, Mrs. XXXXX, you will live a long life and see those babies grow. I didn't know any better than to believe her, because honestly, I didn't look online at ANYTHING. My husband did, but didn't share at my request. I didn't look online because she asked me not to. I was scheduled for 2/6/2014 for my Whipple. My process was very very fast. The weekend before surgery, I wrote letters to my 4 adult children and my husband. I put my affairs in order and I had surgery. As anyone knows after this surgery, you can't remember everything, but I was in the ICU for 12 days. On day 7, my surgeon came in and told me that the cancer had spread to my lymph nodes. She had removed 23 and 3 had shown cancer, so I would need 6 months of chemo. I had nothing by mouth for 9 days and I was told it would be months before I could return to work. I got through the surgery and when I went home, I had the tubes coming out of my stomach and pancreas. I was a size 00 when I left. I had nothing through the surgical implanted feeding tube while in the hospital. Many may not want to hear this, but my faith and my constant connection with Christ during this process was my saving grace. I was smiling and optimistic. I returned to work post whipple after 7 weeks. I started chemo 3 days later on 4/1/14. I am not trying to talk myself up at all, I just want to give strength and encouragement to those who are facing this horrible diagnosis. I now have 5 grandchildren. The twins are 9, I also have two 8 year old and one 5 year old grandson. My husband committed suicide 1/15/22, 1 day before out 40th wedding anniversary, so I guess I am here for a reason. Not sure exactly what that is yet. I have talked to many with cancer about being positive and not giving up, but when I lost my husband, I wasn't sure what to think anymore. Anyway, I am so thankful to be alive and pray for anyone going through this very intense life journey.

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Your story is inspiring. Thank you for sharing your story. Recovering from my Whipple's seems like such a slow process. I am in my 7th week but I guess 6-8 weeks is not a hard and fast rule. So sorry for the loss of your husband.

REPLY
@lynette21460

Wow, I can't believe it has taken me this long to look online about pancreatic cancer and the Whipple. I had my Whipple 02/06/2014. Over 9 years post whipple, I am considered cured. Cured is not a word used by any of the doctors you will meet during this journey and mine even told me that I would NEVER be cured, the best we could hope for was remission. Well, who said you can't do anything if you set your mind to it and trust in God. OK, so my story is that my husband and I had just moved into a new home October 2013. I was expecting my first grandchildren, twins, on 1/9/2014. My focus was the holidays and the babies! I was not feeling well. I was itching all over my whole body, my eyes, inbetween my toes, you name it. Unbearable, but I pushed on. I emptied all the moving boxes, I got through Thanksgiving and then Christmas and then I just felt so horrible I started to feel like nothing would change. I met my new babies and immediately went to my Primary Care Physcian and he said, this doesnt sound right. He didnt just throw Benedryl at me and say deal with it...no he ordered blood tests and a CT Scan. He called me after the CT and told me that there was a mass on my pancreas and that it was blocking my bile duct. This is why I had such intense itching. Thank the Lord for the itching, which saved my life. Most have no symptoms. He scheduled a biopsy and a process to put a stent in to release the bile and stop the itching. I was literally ripping my skin off all day and night. It was horrible. I went in to have the procedure on 1/21/2014 and on 1/27/2014 I met with a man who to this day I have never spoken to again. He was I believe an oncologist type, but I will never forget what he said to me. My husband and I were sitting in front of him, like in the movies, and he said, "Well you know you have Cancer right? It is stage 3 and you have about 4 months to live. I recommend surgery immediately" I was in shock. What is happening, but mainly I got mad! We left and I called my doctor and he advised me to meet with a surgeon who turned out to be one of the most important people in my life. I was 54 years old and she said, Mrs. XXXXX, you will live a long life and see those babies grow. I didn't know any better than to believe her, because honestly, I didn't look online at ANYTHING. My husband did, but didn't share at my request. I didn't look online because she asked me not to. I was scheduled for 2/6/2014 for my Whipple. My process was very very fast. The weekend before surgery, I wrote letters to my 4 adult children and my husband. I put my affairs in order and I had surgery. As anyone knows after this surgery, you can't remember everything, but I was in the ICU for 12 days. On day 7, my surgeon came in and told me that the cancer had spread to my lymph nodes. She had removed 23 and 3 had shown cancer, so I would need 6 months of chemo. I had nothing by mouth for 9 days and I was told it would be months before I could return to work. I got through the surgery and when I went home, I had the tubes coming out of my stomach and pancreas. I was a size 00 when I left. I had nothing through the surgical implanted feeding tube while in the hospital. Many may not want to hear this, but my faith and my constant connection with Christ during this process was my saving grace. I was smiling and optimistic. I returned to work post whipple after 7 weeks. I started chemo 3 days later on 4/1/14. I am not trying to talk myself up at all, I just want to give strength and encouragement to those who are facing this horrible diagnosis. I now have 5 grandchildren. The twins are 9, I also have two 8 year old and one 5 year old grandson. My husband committed suicide 1/15/22, 1 day before out 40th wedding anniversary, so I guess I am here for a reason. Not sure exactly what that is yet. I have talked to many with cancer about being positive and not giving up, but when I lost my husband, I wasn't sure what to think anymore. Anyway, I am so thankful to be alive and pray for anyone going through this very intense life journey.

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Thank you so much for your story. I have a pancreatic neuroendocrine tumor. I had a endoscopy EUS ultrasound done recently. The biopsy came back positive for a stage 1 cancer. I am going for a PET scan on 11 Aug. I have been reading on line a lot. I am very scared that since the tumor is malignant that I might have to have a Whipple. Your story gave me hope. Thank you so much for sharing. I am so sorry to hear about the loss of your husband. I am praying for you.

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