Duodenal cancer: recovery from whipples

Oneshot

cat57 said:

Any recent updates?

These are all fairly old posts....so i am wondering if there are any updates?  I was just diagnosed....have my appt with the surgeon tomorrow to discuss and plan my surgery and pre-op needs. I had read up on the Whipple just in case. I am a chronic pain patient, and have fairly limited mobility, so the need to get up and walk kind of concerns me. I keep reading differing opinions.....that my cancer is agressive....that it is not. My doctor swears i will be cured, then I read about reoccurance.....   I am def guardedly optimistic. 

Sorry so late...

Cat57,

 I had been diagnosed with Stage III pancreatic cancer in "08". That included the duodenum and several other things as well.  So I'm usually only on the pancreatic cancer threads

I saw your post . I know cancer of this sort can be overwelming to say the least. So it is good to see you're optimistic. Even if it is guarded!

Just wanted to touch base and let you know to keep a possitive attitude ( I know it's hard to do sometimes!)

It's been 9 yrs. for me.

Keeping you and yours in prayer

Oneshot

cormeg2

Duodenal cancer

i am new to this as I have been diagnosed with a mass in my duodenum back in June.  I am having lap assisted ecrp egd and eus in two weeks.  I have had gastric bypass making it hard to reach the area. Any words of wisdom. 

Sedabaf

Oneshot said:

Sorry so late...

Cat57,

 I had been diagnosed with Stage III pancreatic cancer in "08". That included the duodenum and several other things as well.  So I'm usually only on the pancreatic cancer threads

I saw your post . I know cancer of this sort can be overwelming to say the least. So it is good to see you're optimistic. Even if it is guarded!

Just wanted to touch base and let you know to keep a possitive attitude ( I know it's hard to do sometimes!)

It's been 9 yrs. for me.

Keeping you and yours in prayer

Oneshot

Father's daughter

Hi dear. I am vedy glad that you defeated your cancer. My de father was diagnosed with duod cancer 2 weeks ago. He has had symptoms  for 1,5 year and we would never imagine it would be cancer. He had heart surgery in 2011 and we could only think about his ichemia. His stage is 3. He had whipple a week ago. his duodenum, gallbladder, part of pancreas, part of stomach were removed. The doctors say he should have chemo. He is doing well with his recovery. I was getting mad after the diognosis and really wanted to see good stories with this type of cancer 

Sedabaf

cormeg2 said:

Duodenal cancer

i am new to this as I have been diagnosed with a mass in my duodenum back in June.  I am having lap assisted ecrp egd and eus in two weeks.  I have had gastric bypass making it hard to reach the area. Any words of wisdom. 

Any news

 I would be very happy to have good news from you

Oneshot

Sedabaf said:

Any news

 I would be very happy to have good news from you

How's your father?

Sedabaf,

           I had posted on the pancreatic cancer thread and saw you had posted here. Thought I'd leave a quick post for you.

Hope all is continuing to improve for your father.

Keeping you and yours in prayer

Oneshot

Sedabaf

Oneshot

Dear, I am thankful for your reply. I have good news. After whipple the analysis results came to be like miracle. None of the 34 lymph nodes were included. Pancreas was not included too. Only duodenum!!! but CT scan had shown that it was stage 4. So the doctor told it is up to us to decide  whether start chemo or not. My father had  a port put on his chest and will start his first round day after tomorrow. Thank you for your support. The worst for us is in the past. I want my 1 year old daughter to play with her grandpa when we go to Armenia in summer.  

Let all people be healthy!!

Oneshot

Sedabaf

 It was good to hear the lymph nodes and pancreas were not included.

I had a port put in when I was battling pancreatic cancer. It made receiving chemo a lot easier than the typical I V  hook up.  My oncologist even gave me something to numb the port area ,that was applied an hour before. This made the infusion a little more comfortable. 

Keeping you and yours in prayer,

Oneshot

 

cancersucksballs

Duodenal Cancer

Hey everyone. I am 35 years old and was diagnosed with a tumor in my duodenum in October. I started chemo and immunotherapy around Christmas. I have that every 3 weeks. After 3 rounds I had a CT and found out my tumor shrunk by 40%. I go again in a few weeks for another CT to find out if it has shrunk more. My doctor attempted the whipple procedure to begin with but was unable to remove the tumor. He did reroute my intestines to go around the tumor. It took a couple of months before it healed to the point that I could eat normal. I lost 51 pounds but have gained back 10lbs and my energy since being able to eat again. I was really getting tired of those Ensures! My drugs they're giving me are Folfox and Keytruda. I have very few side effects and kept my hair. They're working great so far. I wanted to share because there's so little known about this type of cancer. 

Oneshot

CSB

CSB, I was posting on another thread a thought I'd check in this thread. I wanted to let you know. I can relate to getting tired of Ensures! With the exception mine was Boost and I could only stomach the chocolate. It did get old really quick!   Glad to hear your getting some weight back as well your energy.  It does take some time!

I might add .  I totally understand you picking the moniker "cancersucksballs" 

Keeping you in prayer

Oneshot

 

Sedabaf

Oneshot said:

CSB

CSB, I was posting on another thread a thought I'd check in this thread. I wanted to let you know. I can relate to getting tired of Ensures! With the exception mine was Boost and I could only stomach the chocolate. It did get old really quick!   Glad to hear your getting some weight back as well your energy.  It does take some time!

I might add .  I totally understand you picking the moniker "cancersucksballs" 

Keeping you in prayer

Oneshot

 

Oneshot

Dear friend, I have followed all the discussion boards of duodenum or pancreatic cancer survivors and you are the only one that are alive because I see many others have not been online for years. I am very happy for you. It means that this cancer is not as bad as statistics show. As I have already told my father did wellafter his whipple. None of 34 lymph nodes were involved. Andhe got 6 rounds of chemo. I think Folfox. We were so hopeful that he would be cured. And the last 7 months we thought so... but after chemo CT scan showed some swollen lymph nodes on his abdomen and there is now fluid there... and his tumour markers CA 125 and CEA if I am not mistaken went from 70 to 200 andfrom 8 to 10 respectively... and this killed me... But l hoped the markers are not very accurate and about fluid I thought it was postoperation complication or lympedeme...but the chemotherapis is sure that it is recurrence... can we be sure just only by ct scan and tumour markers? Have you ever checked them? I can't live without him... how... God gave us a hope a few months ago... is it possible that he will take it away from us? I know that it is by 90% recurrence but i still believe in miracles... has anything like this happened to you? His last chemo was on 3th May? but he is still now feeling good... he is very tired and has also swollen legs... but socks help him a lot with them. 

I would be very thankful if you could share your experienc. Stay healthy!

Oneshot

Sedabaf said:

Oneshot

Dear friend, I have followed all the discussion boards of duodenum or pancreatic cancer survivors and you are the only one that are alive because I see many others have not been online for years. I am very happy for you. It means that this cancer is not as bad as statistics show. As I have already told my father did wellafter his whipple. None of 34 lymph nodes were involved. Andhe got 6 rounds of chemo. I think Folfox. We were so hopeful that he would be cured. And the last 7 months we thought so... but after chemo CT scan showed some swollen lymph nodes on his abdomen and there is now fluid there... and his tumour markers CA 125 and CEA if I am not mistaken went from 70 to 200 andfrom 8 to 10 respectively... and this killed me... But l hoped the markers are not very accurate and about fluid I thought it was postoperation complication or lympedeme...but the chemotherapis is sure that it is recurrence... can we be sure just only by ct scan and tumour markers? Have you ever checked them? I can't live without him... how... God gave us a hope a few months ago... is it possible that he will take it away from us? I know that it is by 90% recurrence but i still believe in miracles... has anything like this happened to you? His last chemo was on 3th May? but he is still now feeling good... he is very tired and has also swollen legs... but socks help him a lot with them. 

I would be very thankful if you could share your experienc. Stay healthy!

Boards and traffic

Sedabaf,

            Sent a reply to your CSN E-mail. That you had sent me.

 

While you could be very correct in your statement about why you don't see many replies on the pancreatic cancer threads. Due to the survival rate being only, I think, 6% survival rate to 5 years now days. I have posted back and forth with some who , like myself , beat those odds. While on these threads. I know that sometimes, survivors of this cancer don't get on here much.  I , myself have gone months without posting from time to time. I' ve try to correct that.  But sometimes , as I mentioned in the e-mail,  Things just come up.  But, and I am guessing, in any of the cancer threads on CSN. Those who seem to be "Regulars" on these boards. Are trying to provide helpful insight to folks,by sharing thier experiences in thier battle with cancer. While letting others know they are not alone in thier battle. While there are some who have had or are presently battling cancer. Who don't realy care to discuss it for thier own reasons.  As you well know each person deals with cancer in thier own way.  but, there are those who make it through thier battle and just don't get on the site or might not even know about it. I was a year or so after my Whipple before I even thought to look for any site.

Just remember. no matter how bad the odds are . DON'T EVER GIVE UP! ODDS ARE MADE TO BE BROKEN!

Take Care and GOD BLESS

Oneshot

wferdousee

Mbraindawg said:

Massive nausea
My mom just had the whipple procedure on May 25th to remove a 3cm tumor on the head of her pancreas. She has recovered well from the surgery, except she cannot stop vomiting. She is nausious all the time and cannot keep any food down. She throws up bile. She was released two days ago, but had to be readmitted due to dehydration. She is gettin fed through j tube going into her small intestine. And has a drain gtube coming from her stomach. The dr does not know why her stomach is not moving food through it. They say it is still in paresis. Or paralyzed, but it has almostbeen three weeks. Has anyone else had this happen? I am worried she won't ever be able to eat. Thank you.

Cant stop Vomiting

Hi There,

So sorry to hear about your mom. My dad is having the same case as your mom. He had his partial whipple surgery 7 weeks ago and had an endoscopy with dialation due to obstruction in the suture area. He cant stop vomiting and he did not take the J tube yet. He is having food through IV and mouth as our doctor suggested to forcefully have the food. But he is able to have too little to survive and he almost lost 10 kgs already in a month. I just wanted to know if your mom was able to find a way to get rid of it or how she has been doing since then? Really appreciate your help on this!

Sandieboo

Whipple surgery and about to start chemo

I had my whipple about 9 weeks ago.  The first 4-6 weeks were really painful and difficult.I got my appetite back around week 8 and it was great since I couldn't eat for almost me year.  The surgery found my peri ampulary cancer.  I had 4 Positive lymph nodes out of 24.  Just had my port placed last week.  Please tell me about my chemo treatments.  How long are you down and out?  Levels of nausea,...  I want to be better prepared.  Thank you!

Kaleena

Sandieboo said:

Whipple surgery and about to start chemo

I had my whipple about 9 weeks ago.  The first 4-6 weeks were really painful and difficult.I got my appetite back around week 8 and it was great since I couldn't eat for almost me year.  The surgery found my peri ampulary cancer.  I had 4 Positive lymph nodes out of 24.  Just had my port placed last week.  Please tell me about my chemo treatments.  How long are you down and out?  Levels of nausea,...  I want to be better prepared.  Thank you!

Hi Sandiboo:

Hi Sandiboo:

Sorry you had to go through all of that!   Although I have different cancer and didn't have whipple, my husband had the whipple surgery.   Everyone has a different reaction to chemo so it is hard to say how you individually are going to react.   With regard to the Whipple, something you may experience especially during and after chemo is the fact that you will have no warning about going to the bathroom.   My husband would say he got a 2 minute warning and then he had to make sure to find a bathroom.   He never really missed any days of work during his chemo treatments.  I didn's miss any with mine either.   Make sure they give you anti nausea medicine.   Further, if you lose weight while on chemo, make sure they make the adjustments when you get your next treatment.  I gained weight on my chemo.  My husband lost weight.  

You may get periods of extreme exhaustion.  I got that two days after my treatment.  My husband got his a day or so later but his chemo was more intense as he came home with a pump.   He usually went in on a Friday.  Got some chemo at the center and then came home with a pump for the one chemo.  The nurse would come on Sunday to remove the pump.  He did this every two weeks.   This way he was able to work during the week.

With the Whipple, you may need to take supplements to help with digestion.  I forget what they are called.  Its supposed to help control "dumping".

Like I said, though, everyone experiences it different.   But always remember if something doesn't seem right or you don't feel right always ask the doctor or nurse no matter how small a question is.   

You can do this!

Kathy