Hello, April. I am so sorry to learn that continue to have issues since your Whipple. I do hope that you get better and that diet will help that.
Mary Lynn and April, since we are sharing info - I was 62 when I had my Whipple and was in the hospital a week. I was readmitted the following week due to an infection and had a drain inserted. That stay was another four days. The drain was removed about three weeks later.
Since my Whipple, I had a laminectomy in May 2023. A tumor was found to have grown into my spinal chord at T-11/T-12. I reside in Charlotte, NC but had this surgery at Duke University Hospital in Durham, NC.
In November 2022, I began to have the sensation that my right foot was asleep but I still had feeling in the foot. It gradually included my left foot and prior to surgery had crept up my right leg.
By the time of my surgery, I was using a cane as my balance was much affected and had lost much strength in my legs. I was really concerned that I would ultimately be in a wheelchair.
There were several MRIs done to determine if any other tumors had formed in any other part of my back or brain. The concern was that the ampullary carcinoma had metastasized to those areas.
Fortunately there were no other tumors and the one removed was benign. The “asleep” sensation was gone almost immediately after surgery. I just had my one year follow up and I would say that I am 95% back to normal. I still have some minor balance issues as well as loss of strength in my legs. I walk without a cane and can do most anything I could do before except play tennis. My affected balance is a concern for the potential to fall and that would not be good for the back. I’ve resigned myself that I may never play tennis again but that is a minor loss in the scheme of things.
I share all of this to let you know how long it has been since my Whipple and how well I’ve been since. Also so you know there was another major surgery but it was not related to the ampullary carcinoma.
Sorry to hear you had other troubles. But glad it was benign. I’m sure once we have the cancer diagnosis we’ll assume it’s returned with subsequent illnesses. It’s like joining a club of many other cancer victims.
Thanks for sharing.
Mary Lynn
Hi guys. I was just reading about your experiences with ampullary cancer. I am a 51 year old female who was diagnosed in 2020 with ampullary cancer. Mine was also caught very early however, I decided to undergo chemo after my whipple. The actual whipple procedure has changed me for the worst unfortunately. Since the whipple I have severe nausea and diarrhea daily. I'm being aggressively medicated for those symptoms and work with a dieticians. My cancer seems to be gone thank goodness but I just have never recovered from my whipple. Anyone else?
Hello, April. I am so sorry to learn that continue to have issues since your Whipple. I do hope that you get better and that diet will help that.
Mary Lynn and April, since we are sharing info - I was 62 when I had my Whipple and was in the hospital a week. I was readmitted the following week due to an infection and had a drain inserted. That stay was another four days. The drain was removed about three weeks later.
Since my Whipple, I had a laminectomy in May 2023. A tumor was found to have grown into my spinal chord at T-11/T-12. I reside in Charlotte, NC but had this surgery at Duke University Hospital in Durham, NC.
In November 2022, I began to have the sensation that my right foot was asleep but I still had feeling in the foot. It gradually included my left foot and prior to surgery had crept up my right leg.
By the time of my surgery, I was using a cane as my balance was much affected and had lost much strength in my legs. I was really concerned that I would ultimately be in a wheelchair.
There were several MRIs done to determine if any other tumors had formed in any other part of my back or brain. The concern was that the ampullary carcinoma had metastasized to those areas.
Fortunately there were no other tumors and the one removed was benign. The “asleep” sensation was gone almost immediately after surgery. I just had my one year follow up and I would say that I am 95% back to normal. I still have some minor balance issues as well as loss of strength in my legs. I walk without a cane and can do most anything I could do before except play tennis. My affected balance is a concern for the potential to fall and that would not be good for the back. I’ve resigned myself that I may never play tennis again but that is a minor loss in the scheme of things.
I share all of this to let you know how long it has been since my Whipple and how well I’ve been since. Also so you know there was another major surgery but it was not related to the ampullary carcinoma.
Hi April. Sorry to hear you have side effects from the surgery. I am 67 yo, currently 7 weeks post Whipple. Still recovering but doing not too bad although it is a slow process. I’m in the process of trying to decide if I take chemo or not. I was caught early with negative margin and nodes.
What are your thoughts on the chemo, how long post op did you start treatment? What chemo drugs did you have? Did you have side effects?
Thanks for your help.
Mary Lynn
I also forgot to mention that the chemo was rough. It's a personal choice I made at the time to feel a better but honestly I would not not choose chemo again unless absolutely necessary. Just saying.
Thanks for the info. My surgery was an open method, it was pretty extensive but I’m recovering. Interesting about the pain you describe, I haven’t had that but good to know about it.
Too bad we don’t have more resources or other people like us but I guess we are the lucky ones, caught early, most aren’t.
Yes, we are so very lucky. I’m thankful for all of the physicians that got me to where I am now. Hoping that you don’t experience the phantom pains. They are so infrequent for me now that I almost never think about them.
Take good care of yourself and don’t feel that you have to rush recovery. Eating several small meals rather than the usual three also helped me.
Hi April. Sorry to hear you have side effects from the surgery. I am 67 yo, currently 7 weeks post Whipple. Still recovering but doing not too bad although it is a slow process. I’m in the process of trying to decide if I take chemo or not. I was caught early with negative margin and nodes.
What are your thoughts on the chemo, how long post op did you start treatment? What chemo drugs did you have? Did you have side effects?
Thanks for your help.
Mary Lynn
It was supposed to be 4 weeks after chemo but I was re admitted to hospital 3 times due to complications from whipple. So about 3 months after my whipple I started chemo. For my chemo treatment I was given folfox and nulasta. I chose to do the chemo because ampullary cancer is very rare and there is just not enough data about what causes it or too much known about the reoccurrence rate so I did it as a "just in case"
Hi guys. I was just reading about your experiences with ampullary cancer. I am a 51 year old female who was diagnosed in 2020 with ampullary cancer. Mine was also caught very early however, I decided to undergo chemo after my whipple. The actual whipple procedure has changed me for the worst unfortunately. Since the whipple I have severe nausea and diarrhea daily. I'm being aggressively medicated for those symptoms and work with a dieticians. My cancer seems to be gone thank goodness but I just have never recovered from my whipple. Anyone else?
Hi April. Sorry to hear you have side effects from the surgery. I am 67 yo, currently 7 weeks post Whipple. Still recovering but doing not too bad although it is a slow process. I’m in the process of trying to decide if I take chemo or not. I was caught early with negative margin and nodes.
What are your thoughts on the chemo, how long post op did you start treatment? What chemo drugs did you have? Did you have side effects?
Thanks for your help.
Mary Lynn
Hi guys. I was just reading about your experiences with ampullary cancer. I am a 51 year old female who was diagnosed in 2020 with ampullary cancer. Mine was also caught very early however, I decided to undergo chemo after my whipple. The actual whipple procedure has changed me for the worst unfortunately. Since the whipple I have severe nausea and diarrhea daily. I'm being aggressively medicated for those symptoms and work with a dieticians. My cancer seems to be gone thank goodness but I just have never recovered from my whipple. Anyone else?
ML, I’m glad to hear that you are starting to eat better but sorry that you have to take enzymes. I don’t know anyone who has been through this same surgery so I just tried to find things on the internet about it.
I can tell you that I continue to have phantom pains in the area of my diaphragm periodically. They were very painful when I initially would have them and luckily they only lasted a couple of minutes. So painful that I would cry. Now I have them infrequently and I can feel when they are coming on. I use the Lamaze breathing technique and they pass in less than a minute. I can go weeks without them and then sometimes I will have three in a day. I’ve read about other people having these and some last much longer but there doesn’t seem to be an answer as to what causes them.
Was your surgery done laparoscopically? My surgery was done that way. It did take me about 8 months before I felt comfortable and strong enough to try getting back on a tennis court.
I hope you continue to improve and get to where you feel like yourself soon. It does take awhile but you will get there.
One other thing. I did have two infusion sessions to get to where I wasn’t so fatigued. My ferritin was low and the infusions helped a lot.
Take good care of yourself and you may reach out to me any time for whatever.
Thanks for the info. My surgery was an open method, it was pretty extensive but I’m recovering. Interesting about the pain you describe, I haven’t had that but good to know about it.
Too bad we don’t have more resources or other people like us but I guess we are the lucky ones, caught early, most aren’t.
ML, I’m glad to hear that you are starting to eat better but sorry that you have to take enzymes. I don’t know anyone who has been through this same surgery so I just tried to find things on the internet about it.
I can tell you that I continue to have phantom pains in the area of my diaphragm periodically. They were very painful when I initially would have them and luckily they only lasted a couple of minutes. So painful that I would cry. Now I have them infrequently and I can feel when they are coming on. I use the Lamaze breathing technique and they pass in less than a minute. I can go weeks without them and then sometimes I will have three in a day. I’ve read about other people having these and some last much longer but there doesn’t seem to be an answer as to what causes them.
Was your surgery done laparoscopically? My surgery was done that way. It did take me about 8 months before I felt comfortable and strong enough to try getting back on a tennis court.
I hope you continue to improve and get to where you feel like yourself soon. It does take awhile but you will get there.
One other thing. I did have two infusion sessions to get to where I wasn’t so fatigued. My ferritin was low and the infusions helped a lot.
Take good care of yourself and you may reach out to me any time for whatever.
ML, I am doing well. Like you I had clear margins and all lymph nodes were negative. My surgeon and his colleagues conferred about my case and recommended no chemo and/or radiation. I went along with the surgeons’ recommendation. At one year post surgery a new CT scan was done and my surgeon told me that everything still looked very good, that I was cancer free and he did not need to see me anymore.
I was back playing tennis after 8 months. I never had any trouble going back to eating everything that I had eaten prior to surgery.
I hope your recovery continues to go well.
Please feel free to ask for any additional info you may want.
Glad to hear you are doing well. You mentioned you are able to eat everything, that is great. I am starting to eat pretty good but only because I take pancreatic enzymes. I’m starting to feel more normal but not 100% yet, hopefully I’ll improve more in the next few weeks.
Do you know others in our situation?
ML
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Sorry to hear you had other troubles. But glad it was benign. I’m sure once we have the cancer diagnosis we’ll assume it’s returned with subsequent illnesses. It’s like joining a club of many other cancer victims.
Thanks for sharing.
Mary Lynn
Hello, April. I am so sorry to learn that continue to have issues since your Whipple. I do hope that you get better and that diet will help that.
Mary Lynn and April, since we are sharing info - I was 62 when I had my Whipple and was in the hospital a week. I was readmitted the following week due to an infection and had a drain inserted. That stay was another four days. The drain was removed about three weeks later.
Since my Whipple, I had a laminectomy in May 2023. A tumor was found to have grown into my spinal chord at T-11/T-12. I reside in Charlotte, NC but had this surgery at Duke University Hospital in Durham, NC.
In November 2022, I began to have the sensation that my right foot was asleep but I still had feeling in the foot. It gradually included my left foot and prior to surgery had crept up my right leg.
By the time of my surgery, I was using a cane as my balance was much affected and had lost much strength in my legs. I was really concerned that I would ultimately be in a wheelchair.
There were several MRIs done to determine if any other tumors had formed in any other part of my back or brain. The concern was that the ampullary carcinoma had metastasized to those areas.
Fortunately there were no other tumors and the one removed was benign. The “asleep” sensation was gone almost immediately after surgery. I just had my one year follow up and I would say that I am 95% back to normal. I still have some minor balance issues as well as loss of strength in my legs. I walk without a cane and can do most anything I could do before except play tennis. My affected balance is a concern for the potential to fall and that would not be good for the back. I’ve resigned myself that I may never play tennis again but that is a minor loss in the scheme of things.
I share all of this to let you know how long it has been since my Whipple and how well I’ve been since. Also so you know there was another major surgery but it was not related to the ampullary carcinoma.
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Helpful -
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2 ReactionsI also forgot to mention that the chemo was rough. It's a personal choice I made at the time to feel a better but honestly I would not not choose chemo again unless absolutely necessary. Just saying.
Yes, we are so very lucky. I’m thankful for all of the physicians that got me to where I am now. Hoping that you don’t experience the phantom pains. They are so infrequent for me now that I almost never think about them.
Take good care of yourself and don’t feel that you have to rush recovery. Eating several small meals rather than the usual three also helped me.
Keep in touch and let me know how you are doing.
It was supposed to be 4 weeks after chemo but I was re admitted to hospital 3 times due to complications from whipple. So about 3 months after my whipple I started chemo. For my chemo treatment I was given folfox and nulasta. I chose to do the chemo because ampullary cancer is very rare and there is just not enough data about what causes it or too much known about the reoccurrence rate so I did it as a "just in case"
Hi April. Sorry to hear you have side effects from the surgery. I am 67 yo, currently 7 weeks post Whipple. Still recovering but doing not too bad although it is a slow process. I’m in the process of trying to decide if I take chemo or not. I was caught early with negative margin and nodes.
What are your thoughts on the chemo, how long post op did you start treatment? What chemo drugs did you have? Did you have side effects?
Thanks for your help.
Mary Lynn
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Helpful -
Hug
1 ReactionHi guys. I was just reading about your experiences with ampullary cancer. I am a 51 year old female who was diagnosed in 2020 with ampullary cancer. Mine was also caught very early however, I decided to undergo chemo after my whipple. The actual whipple procedure has changed me for the worst unfortunately. Since the whipple I have severe nausea and diarrhea daily. I'm being aggressively medicated for those symptoms and work with a dieticians. My cancer seems to be gone thank goodness but I just have never recovered from my whipple. Anyone else?
-
Like -
Helpful -
Hug
1 ReactionThanks for the info. My surgery was an open method, it was pretty extensive but I’m recovering. Interesting about the pain you describe, I haven’t had that but good to know about it.
Too bad we don’t have more resources or other people like us but I guess we are the lucky ones, caught early, most aren’t.
-
Like -
Helpful -
Hug
1 ReactionML, I’m glad to hear that you are starting to eat better but sorry that you have to take enzymes. I don’t know anyone who has been through this same surgery so I just tried to find things on the internet about it.
I can tell you that I continue to have phantom pains in the area of my diaphragm periodically. They were very painful when I initially would have them and luckily they only lasted a couple of minutes. So painful that I would cry. Now I have them infrequently and I can feel when they are coming on. I use the Lamaze breathing technique and they pass in less than a minute. I can go weeks without them and then sometimes I will have three in a day. I’ve read about other people having these and some last much longer but there doesn’t seem to be an answer as to what causes them.
Was your surgery done laparoscopically? My surgery was done that way. It did take me about 8 months before I felt comfortable and strong enough to try getting back on a tennis court.
I hope you continue to improve and get to where you feel like yourself soon. It does take awhile but you will get there.
One other thing. I did have two infusion sessions to get to where I wasn’t so fatigued. My ferritin was low and the infusions helped a lot.
Take good care of yourself and you may reach out to me any time for whatever.
Glad to hear you are doing well. You mentioned you are able to eat everything, that is great. I am starting to eat pretty good but only because I take pancreatic enzymes. I’m starting to feel more normal but not 100% yet, hopefully I’ll improve more in the next few weeks.
Do you know others in our situation?
ML