Life expectancy after the Whipple (surviors please respond)

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Life expectancy after the Whipple (surviors please respond)

by Hopefull_prayin on Sat Mar 05, 2011 06:47 PM

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My mother was in and out of the hospital since early summer with actute pancreatitis. Nothing much was done because of horrible doctors and hospitals that would not listen to her. SHe is not a drinker (maybe 1 or 2 a year at a wedding or big party). SHe does not abuse prescriptition medicince or anything else. The only thing she does is smoke. That should have been there first clue as I have read alot of people with pancreatic cancer are smokers. She also was slightly overweight but she did have 5 kids.

In January she had the luck of being able to be transferred to a hospital that specilizes in the pancrease and digestive tract. Her surgeon insisted she have the whipple within no longer than a month timeframe. SHe had cysts removed in september and they were back, with one on the outside this time. Her surgeon had a "hunch" there was a tumor they couldnt see causeing the blockage. He was right.

After an 8 hour whipple surgery the doctor told us they had to take 4 cm more of the pancrease then they wanted to  ( I am not clear if they had wanted to take 70% or 80% to start) and how much is left is unclear 9except that it is the least amount possible to leave without taking the whole organ. The pancrease was so inflammed and the 80% that was dead was hardened and full of scar tissue that it was so hard to cut out.

Her spleen was left in, but her duedonom and gallbladder and a part of the intestines along with the pancrease portion was removed. The surgeon was confident he got everything around the tumor and all the dead parts. He sent it away for pathogy with a sliver of her liver (that was found to be severly fatty).

Pathology came back that the liver is cancer free right now and that the tumor was in fact cancerous. I do not know the stage yet but do know it was unable to be seen so no metter the stage this was the earliest it could have been caught becasue the doctor was going on a feeling rather than any proof of the tumor from any of the scans. He paid attantion t her symptoms and had enough experience with whipples and gastric cancers to  know it needed to be done and done now.

I am my moms little researcher as she says and was there for her through the first days before I had to head back to work. I am conflicted because my mother means more to me than any job or anything else. I want to be there for her and create memories to last a lifetime especially if her outcome is not as great as we hoped.

As I research and read I am so scared. Everything says 2 years or less. Life expectency for 5 years or more is less than 20%. I want my mother to be part of the 20%.

I am hoping to be able to give herthe trip she always wanted this summer as birthday/mothers day gift...but to do that i will have to work another job. What will her life be like as she undergoes chemo? Should i instead give up my jobs and be there for her or can i believe that she will be part of that 20 % and be alright now?

What affects her chances at beating cancer? What makes it come back if they think they got it all and theres no spreadin?

Also please tell me your stories so I can have hope and know what are some signs to look for that it might be back as she heals?

RE: Life expectancy after the Whipple (surviors please respond)

by barb1214 on Sat Mar 05, 2011 08:57 PM

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I'm so sorry to hear about your mom. Pancreatic cancer is a terrible disease. Luckily for your mom, she was able to have surgery and it was caught early. I'm no expert on this but one of my dearest friends is going throught this right now. One thing you might like to find out about your mom, is the type of tumor. Adenocarcinoma is the most common type of pancreatic tumor but there are other types like neuroendocrine tumors. The outcomes for neuroendocrine turmors seems to be somewhat better than for adenocarcinoma.

My friend was diagnosed at the end of last May. She was a youthful, healthy, energetic 54 yr old. Her tumor was in the middle section of the pancreas so she didn't have the whipple. She had a distal pancreatomy and had her spleen removed as well as the middle and tail of the pancreas. Her surgical recovery did not seem as difficult as for those that have had a whipple. There are many difficulties with the whipple and you will find much discussion on this board about it and hopefully answers for you as they arise.

My friend just finished her 6 months of chemo with 6 weeks of radiation during the 3rd and 4th months. She received Gemcitibine once/wk for 3 weeks with one week off. during radiation, she received radiation monday to friday and a half dose of chemo twice per week during that time. When she was just undergoing chemo, she was tired and felt the worst about 2 days after the treatment. But she did quite well overall. Out for walks and doing light housekeeping, cooking. Once radiation started, she was exhausted and spent a lot of time sleeping. Her white cell count was very low and she avoided crowds so as to not catch a virus. she has found the last 6 months very isolating.

If your mom hasn't started chemo yet, it's unlikely she will be done with it by the summer. Personally, I think that rather than working another job to take your mom on a trip, you should spend your free time with your mom now if you can. Maybe there are other ways that you can make some lifetime memories together.

I wish you all the best on this difficult journey.

Barb

RE: Life expectancy after the Whipple (surviors please respond)

by barmoor on Sat Mar 05, 2011 09:12 PM

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Hi

Let me firstly tell you my position so you know where i am coming from

i had Bladder cancer that was the most aggressive, i had my bladder removed together with my prostrate and lymph nodes

i then had chemo because although they had removed all of the cancer there is still a chance that one or more cancer cells could have floated  off during surgery

later i  had a bile duct blockage which after having 2 stents put in and several CT scans and ultra sound scans they could not find any evidence of cancer but decided i needed a Whipple op which i had 7 months ago where they removed the head of the pancreas , gall bladder and ducts, the blockage is still a mystery

you quote percentages for pancreatic cancer which are correct as i have seen them before but the low survival rate is in my opinion low because this cancer is too often found at a very late stage because the pancreas is hidden by the liver and does not show on CT scans until it is a very large tumor and protruding past the liver

so in my opinion if your mum has had all the cancer removed she has every hope of a long life, i know i am expecting many more years yet

i had my Bladder removed in 2007 and now i am playing golf 3 times a week and feeling very strong

all the best

Brian

RE: Life expectancy after the Whipple (surviors please respond)

by Hopefull_prayin on Sat Mar 05, 2011 10:01 PM

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Thank you Brian for sharing. I am very hopefull butg at the same time the more I read I am scared. My mother is a strong woman but has lived with so much stress that i worry if her body is as strong as her mind.

I have to believe in her surgeon because he noticed what no one else did. I also have to believe since she didnt have any of the signs of pancreas cancer that it is the earlyt stage.

We have to wait to Wednesday to find out what type of tunor and what stage it was that they took out.

SHe also had stints put in for blockages. She had 4 hospital stays in the 4 months for pancretitis and had some rude doctors, even the last stay when she finally met this surgeon. His attending told her nothing was wrong with her why was she even there. But luckily her surgeon is so experienced with cancer and a smart enough caring guy to recommend the whipple to her. ANy longer and she would not have been able to have it cut out because the pancretitis epsisodes had killed off 80 percfent of her pancreas and it was inflammed and hart to cut out.

I still am not sure about what parts of her pancreas are left and how much exactly. I know its a small amount and they had 2 take basically the whole middle out but that doesnt sound technically right.

It really stinks because i love 10 hours away and have car trouble. So I can just hope in my car and go see her or attend all her post op visits with her.

Luckily we have an amzing extended family that is taking care of her in their home which is conviently close to the doctors (NY city). For me and my siblings its just hard cause we are all so far away (and my younger siblings who are not as far just don't have the means to commute back and forth to where she is staying).

I wish I could hop on a plane every weekend but I can not afford that because its like 400 dollars a trip. I want to do it but I think i would rather give my mom the one experience she has always wanted (a trip to ireland). I will get to spend the summer with her as I am a teacher and spring break.  Whether she lives another 30 40 years or not I still want to give her some joy in life because from what i read recovery sucks.

I just keep hoping I find more and more survior stories to help me feel more comfortable with her odds.

RE: Life expectancy after the Whipple (surviors please respond)

by AliveInOldeTown on Sat Mar 05, 2011 10:35 PM

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Reading statistics for PC can be a dreadful experience.

So much depends on the stage the cancer is found.  If it is found early and you have Whipple surgery without complications, the stats for five year survival are decent.  If your Mom was relatively healthy before the surgery, and the tumour was caught early stage, she has a good chance for long term survival.

I had surgery in Nov. 2002.  The tumour was caught very early stage.  I had no other health complications at time of surgery.  I was an active fifty years old, never smoked, normal weight, etc. This surgery is complex and recovery takes time, but it is doable.  The surgeons were able to save much of my pancreas (more than half) because of the size/location of the tumour.  I became diabetic after the surgery although thankfully, I am able to handle it without medication through diet and exercise.

Life after Whipple is not without challenge, but I feel fortunate to be alive today and I have good quality of life. I hope your Mom's jouney works out the same.

RE: Life expectancy after the Whipple (surviors please respond)

by squand on Sun Mar 06, 2011 02:55 AM

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I had whipple july and still feel pretty spry.I read all the stats and articles.I am on folfirinox and seemto be doing well.Take each day as another treasure we have and forget about the stats.

Take care

Rick

RE: Life expectancy after the Whipple (surviors please respond)

by chuck1943 on Sun Mar 06, 2011 02:32 PM

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Im 15 months out from whipple. Ray is right, each day is a good thing. i had six months of chemo wrapped around 28 days of radiation with oral chemo. There were some bad days, nothing earth shakeing, every bad one was better then what it could be. I have a few things going on now, always something new, always wondering what that new pain is. You will see that your mom will look at things diferently now, you stay posative and it will help her do so too. Always look forward, the next day will be better, and if it isent than the next one will. As far as odds, she is already ahead of the game.

RE: Life expectancy after the Whipple (surviors please respond)

by ebradfield on Mon Mar 07, 2011 11:22 PM

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My mom had a modified whipple December 14, 2007 and was back home and at the hospital to hold my new baby daughter a few moments after she was born mid-morning on January 7, 2008. Mom's are strong so don't count her out just yet. Mine went through 6 months of Gemzar, 5-FU and radiation for safety and seemed to do very well. She had a little tiredness and some slight nausea but nothing too bad she said. Hair thinned but didn't fall out. She recovered from it all really nicely. It's different from person to person. But nothing like the doom and gloom predicted by everyone she talked to in the medical world. In fact, she has always said that the worst part of this hasn't been the cancer but the medical world telling her there is no way she will survive longer than 6 months. That has been truly depressing. I've come to believe that so many in the medical world have a God complex. And they may be correct on prognosis but to what end? Make sure everything is in order and you know her wishes in worst case - medical power of attorney, will, etc. We should all do that anyway. And then get on celebrating life as best you can. It's hard. Its a scary time. But don't waste the time you have being stopped by fear. My mom takes several trips with and without us kids and my dad each year. She went to Alaska and rode a helicopter to the top of a glacier, she summered in Colorado to avoid the Texas heat. She's lived life without slowing down. And you should too. Her philosophy has always been that none of us are getting out of here alive and if it's not this terrible cancer it'll be something else. So we all try to make sure there is nothing left unsaid or undone. Been a good lesson for all of us in my family. 

Keep hope. It doesn't cost anything and it doesn't hurt anything. Since she has had cancer they will likely continue scanning and checking her CA19-9. That's really the best they can do for right now.

My mother's cancer has come back in her bones as of January 2011 - only her bones. Very unusual. She just started Folfirinox treatments two weeks ago. Very scared of that regime but she has had only a little nausea and some loose stools. They told her to expect terrible things off that one too but she has been ok. And now they think she will continue to do well on it. So you never know.

Another thing that I think is helpful - prior to starting chemo they should give her prescriptions for anti-nausea, anti-diarreal, and stuff like that. Get them filled and have them at the house in case she needs them. Last thing you want to do is have to get prescriptions filled when you are feeling lousy. Also, make sure she drinks lots of water and eats to keep weight on. My mom really liked baked potatoes and boiled carrots and broiled chicken. Really bland but chemo changes tastes. But make sure she eats something to keep the weight on.

Try not to read the horror stories on the Internet. It all seems to be bad news. This is a good site for info though.

Good luck to your mom and to you.

RE: Life expectancy after the Whipple (surviors please respond)

by emilys on Tue Mar 08, 2011 02:40 AM

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I had a whipple in 1999, and while I am in chronic pain, developed pancreatitis, and have a not so good quality of life from the other side effects of this unbelievable surgery, I am still here 11 years later.  Keep hope alive, take her to Ireland, and love life!  None of us know when our time is, so smile, and find comfort and strength in the Lord.  Praying for you and your mom!

RE: Life expectancy after the Whipple (surviors please respond)

by sledd on Thu Mar 10, 2011 01:46 AM

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On Mar 06, 2011 2:55 AM squand wrote:

I had whipple july and still feel pretty spry.I read all the stats and articles.I am on folfirinox and seemto be doing well.Take "" target="_blank" rel="nofollow">http://well.Take " target="_blank" rel="nofollow">well.Take each day as another treasure we have and forget about the stats.

Take care

Rick

I agree with you. I take one day at a time. I really appreciate the good ones.

I had Whipple last April and am doing OK.

I take creon with meals and Welchol for clestrol

Sledd

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