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Thread: Stage 4 pancreatic cancer, what's the point in chemo?

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    Stage 4 pancreatic cancer, what's the point in chemo?

    Hi all,

    I've posted another thread about my mum not being able to have the whipple procedure... She was suicidal the last couple days and more or less loss hope as she's still recovering from the operation and in a lot of pain.

    We haven't told her about the failed whipple procedure. Don't want her to lose even more hope... we're waiting for her to recover from the operation and tell break it to her slowly.

    What I'm curious about is chem. What's the point if you're gonna die anyway. I know sometimes chemo can extend your life a bit but even then, it's not 100% certain it will... And what kind of quality of life would it be if my mum is hammered by the chemo.. She's the type of person that can get nauseous on the train, cars and boat so I know that chemo will be even worse...

    I've read mix comments on chemo. Some say it was great and it extended there life and they were in less pain. While other say that it was the worst thing ever and they rather die...

    I pray that my mum goes into remission but I know that's probably not gonna happen. God has determined it's time for her. But I'm worried that the pain she's gonna suffer will make her try to commit suicide... I don't want her to do anything that will ruin her chance to be in heaven.

    Can any give some advice? Would you do chemo or would you just accept you fate? What is the most painless option?

    Thanks

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    Super Moderator Top User Hope2012's Avatar
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    Quote Originally Posted by nguyepe View Post
    What I'm curious about is chem. What's the point if you're gonna die anyway. I know sometimes chemo can extend your life a bit but even then, it's not 100% certain it will... And what kind of quality of life would it be if my mum is hammered by the chemo.. She's the type of person that can get nauseous on the train, cars and boat so I know that chemo will be even worse...

    I've read mix comments on chemo. Some say it was great and it extended there life and they were in less pain. While other say that it was the worst thing ever and they rather die...

    Thanks
    Wow...I'm so sorry to read about your mom's latest information here. One thing to ask about the chemo is what is it intended for? Is it for treatment to try and reduce the tumor so that surgery can be performed or is it palliative in nature. My friend who was stage 4 liver cancer was told that further surgery was not possible and that he could choose radiation and or chemo to help lessen pain. Chemo always made him feel horrible, so he declined that, but went ahead with radiation and it seems to have worked for a short while in reducing the unbearable pain he was in all the time. My dad also declined further chemo when his cancer spread as to him, his personal decision was to try to enjoy the time he had left without the side effects of chemo. Everyone is different when it comes to how they react to chemo, so it's a personal decision that everyone will have to accept. What it comes down to is making her as comfortable and pain free as possible for the time she has left.
    This dark night shall end and the sun will rise again...
    Believe

    - Dad diagnosed in 1992 with primary bladder cancer
    - bladder removed and new one made from resected intestine
    - chemotherapy regimen started
    - mets to large intestines discovered in 1993...more chemo...tumors disappearing
    - complained of neck pain Dec 1994. Mets to brainstem confirmed
    - passed away Feb 24, 1995

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    My Husband is also stage 4. He has been on two different chemotherapy regimens in the past 6 months. This weekend (for example) he went fishing with his brother for shad in their kayaks, he taught an eighth grade boy how to shoot sporting clays, attended our kid's school auction, we went out to dinner with another couple last night and had pizza out with our youngest son tonight. He is fast asleep as I write this with no discernible pain, fatigue or nausea. His latest scans show that the lesions on his liver (of which there are 'innumerable' ) have reduced in size by 30% and his CA19-9 is 35 (normal!). Chemo doesn't always look like it does in the movies. I'm not saying this is sustainable, I know it is time limited and we have some scary stuff ahead, but if he had chosen to forgo chemotherapy, there is a pretty good chance that he would either be dead or close to it at this point.
    9/22/11 - Husband of 23 years diagnosed with Stage IV Pancreatic Cancer - asymptomatic
    10/11/11 - clinical trial @ Georgetown Hospital Oxaliplatin, Leucovorin, 5-FU and trial drug ABT-888
    2/1/12 - Gemzar and Xeloda
    3/19/12 - CT shows liver lesions shrunk 30% and CA19-9 down to 35!
    8/1/12 - All tumors have grown by 100%, stopping chemo - we will let it be.
    8/31/12 - A peaceful and pain-free death, we couldn't have asked for anything more

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    Super Moderator Top User DebbieC's Avatar
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    Mom3bys....I couldn't have said it better myself! And I am so happy to hear that your husband is doing so well...tell him to keep up the good work! We are rooting for him!

    A person doesn't know just how long they will go on with chemo...could be months, could be years for some! You don't know what experiences you will have in the meantime, and what memories can be made. My attitude towards this is to fight and keep fighting for as long as you can....you just never know.

    My dad was stage 2...had the whipple, now has mets to the lungs and is restaged at stage IV. We are going to one of the best cancer centers in the country today to fight this because all we have is hope! Where there is life, there is hope!
    March 21, 2011 - Dad diagnosed. Pancreatic Adenocarcinoma on head of pancreas.
    April 2011 - Gemcitabine and radiation for a total of 12 weeks.
    October 14, 2011 - Successful Whipple procedure. Cancer free! Best 5 months of my life!!!
    March 2, 2012 - CT scan and discovery of possible mets to both lungs.
    March 23, 2012 - Biopsy confirmed recurrence.
    May 2, 2012 - Folfiri regimen started. Stopped after 2 treatments due to infection.
    June 2, 2012 - Switched to Xeloda
    Sept. 21, 2012 - No more chemo...treatment not working anymore. Now we wait and pray.
    October 6, 2012 - My dad is now at peace in Heaven, watching over us until we meet again.

    ♥ Forever in my heart! Miss you every day more than words can say! ♥

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    Wow....so sorry your Mum has lost her will to live. Your post upset me, and shook me out of the moody slump I have been in for a few days. I was diagnosed Stage 4 PC last January 2011. I only expected 5 months, but chose to try a rigorous chemo. It is hard, but I live for the days in a row that I feel good. I cook, go for walks, spend time with my children, and even go in to school where I was a teacher and tutor. It sucks having cancer. I know I am going to die sooner rather than later, but I have had more time to do what I enjoy and be with people that I love. I wish I could visit your Mum and make her see that life is worth living if just for one more day. I hope that she starts to feel better after this surgery, and gets back the will to live. Would I do chemo again.....yes. What is the least painful? They call chemo for Stage 4 palliative. In many cases it shrinks the cancer enough to make the patient more comfortable, and again resume for a time, some quality of life.

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    thank you all for your kin words and sharing your stories. I myself have lost hope. Thinking that all my mum has a head of her is pain and suffering before she dies... Thinking chemo is just going to drag on her pain... But knowing she can go about her normal life with less pain brings me hope... You guys are right, this is a chance to make memories... i feel so sorry for my mum. She's spent her entire life working 12 to 14 hours shifts to put food and a roof over our heads. She thought she would live for a long time so no point in retiring and going on holiday... You know, she's never been on holiday all her life! I would offer to take her but she would refuse and say it's a waste of money... I just pray that she has the will to live even if it's just for a while. I think this is God's final test to see how she handles this.

    thanks again everyone... Never thought I would ever be on a cancer forum. God bless you and your family

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    Senior User laurah01's Avatar
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    nguyepe, you are going through a really rough time and there are so many emotions that come with that. Your mom sounds like a wonderful person who has been very selfless through her life, making sure everyone else was taken care of. I think it's hard for a parent when they are used to being the caregiver to suddenly have their children taking care of them. Sometimes it's hard to have hope because the future seems so bleak, but you have to keep pushing along and hoping for another good day. When my dad was sick I never looked too far ahead, just made sure to make the most of every day he was blessed with, and we were blessed with 11 months. When you need to vent or you are feeling down, this is really a great place for support with people who truly understand what you are going through. You and your family are in my prayers.
    Laura
    Dad diagnosed with Stage IV PC with mets to liver March 4, 2011 ~ Died 11 months later, February 4, 2012.

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    Quote Originally Posted by laurah01 View Post
    nguyepe, you are going through a really rough time and there are so many emotions that come with that. Your mom sounds like a wonderful person who has been very selfless through her life, making sure everyone else was taken care of. I think it's hard for a parent when they are used to being the caregiver to suddenly have their children taking care of them. Sometimes it's hard to have hope because the future seems so bleak, but you have to keep pushing along and hoping for another good day. When my dad was sick I never looked too far ahead, just made sure to make the most of every day he was blessed with, and we were blessed with 11 months. When you need to vent or you are feeling down, this is really a great place for support with people who truly understand what you are going through. You and your family are in my prayers.
    Laura
    Thanks Laura

    Yeah she's the best person in the world... so independent and i think she's finding it hard to rely on others... I'm sorry to hear about your dad. 11 months sounds so short but I suppose you made a lot of memories in that 11 months... our 2nd baby is due in 2 weeks... I want her to still be around and watch them grow up... i want my kids to remember their grandmother...

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    Senior User hiyasofsj's Avatar
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    I too share my heartfelt sympathies to you and your family. It's extremely tough no matter how you look at this but HOPE is the last thing you have to hold firmly on until its her time. Let me say in my case as a caregiver to my wife of 33 years who was diagnosed with Stage 4 PC last July 2011, her prognosis at the time of her diagnosis not good at all and filled with uncertainty. Our oncologist did say one thing that encourgaged my wife and I and that was "it is unfair the majority of people label Stage 4-pc as an immediate death sentence when IT IS NOT!!!" This gave my wife all the encouragement she needed to fight with all her might and she did! Support systems are crucial right now and your Mom needs all the support from you and her family to keep her spirits up and to make her feel like she has all of you to continue living for.

    So getting back to our situation with regard to chemo our consultation with pancreatic specialists at UCSF recommended a few options for my wife. One was Folfirinox and the others were clinical trials. We decided to go with Folfirinox and we went into the therapy understanding it will affect everyone differently and that if she was unable to tolerate it or any other form of chemo, then the end was indeed closer than ever. Fortunately she tolerated it well with remarkable results! It's now almost 9 months since diagnosis and tumor markers are normal at below 30, no pain or pain meds since she started chemo in August of 2011, maintains her weight, eats well, quality of life excellent considering.... so yes, everyone has a different experience.... but you have HOPE! Hold on to it for as long as you can.... i've included you and your family in my prayers!

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    Quote Originally Posted by hiyasofsj View Post
    I too share my heartfelt sympathies to you and your family. It's extremely tough no matter how you look at this but HOPE is the last thing you have to hold firmly on until its her time. Let me say in my case as a caregiver to my wife of 33 years who was diagnosed with Stage 4 PC last July 2011, her prognosis at the time of her diagnosis not good at all and filled with uncertainty. Our oncologist did say one thing that encourgaged my wife and I and that was "it is unfair the majority of people label Stage 4-pc as an immediate death sentence when IT IS NOT!!!" This gave my wife all the encouragement she needed to fight with all her might and she did! Support systems are crucial right now and your Mom needs all the support from you and her family to keep her spirits up and to make her feel like she has all of you to continue living for.

    So getting back to our situation with regard to chemo our consultation with pancreatic specialists at UCSF recommended a few options for my wife. One was Folfirinox and the others were clinical trials. We decided to go with Folfirinox and we went into the therapy understanding it will affect everyone differently and that if she was unable to tolerate it or any other form of chemo, then the end was indeed closer than ever. Fortunately she tolerated it well with remarkable results! It's now almost 9 months since diagnosis and tumor markers are normal at below 30, no pain or pain meds since she started chemo in August of 2011, maintains her weight, eats well, quality of life excellent considering.... so yes, everyone has a different experience.... but you have HOPE! Hold on to it for as long as you can.... i've included you and your family in my prayers!
    Thank you for sharing your story... You have given me even more hope. You are lucky to have a caring doctor. My mother's doctor seems heartless and pretty much said that if they can't operate, she has 8 months... Didn't even try and sugar coat it... I want the truth but where is the compassion. I suppose he's been doing this for a long time and she's probably another statistic to him. I will share your stories with my mum when she recovers from the operation. This will give her the hope she has lost.

    Thanks again and may God bless all of you.

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    Senior User laurah01's Avatar
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    Remember, it is never too late to get a second opinion either, especially if you are not comfortable with your oncologist. My dad was very fortunate in this, his oncologist actually listened to him...never interrrupted him once when he would talk...took my dad's concerns and considerations into account when planning out his treatment. Quality was much more important to my dad than quantity and he lived out the majority of the 11 months with very good quality...I think that's what made it so hard when things turned around the last month, because he had been doing so well. Find someone to fight the fight with you, to be a bright light to your mom. My dad's doctor was honest, we knew where things were going, but he was willing to get in the fight and battle it out as long as they could. They are not statistics, they are human beings with families and friends and dogs and hobbies who were dealt a crappy hand for no logical reason.

    Laura
    Dad diagnosed with Stage IV PC with mets to liver March 4, 2011 ~ Died 11 months later, February 4, 2012.

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    Nicely said Laurah.

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    Again bravo for your well spoken words.

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    Regular User daddysgirl32's Avatar
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    Quote Originally Posted by laurah01 View Post
    Remember, it is never too late to get a second opinion either, especially if you are not comfortable with your oncologist. My dad was very fortunate in this, his oncologist actually listened to him...never interrrupted him once when he would talk...took my dad's concerns and considerations into account when planning out his treatment. Quality was much more important to my dad than quantity and he lived out the majority of the 11 months with very good quality...I think that's what made it so hard when things turned around the last month, because he had been doing so well. Find someone to fight the fight with you, to be a bright light to your mom. My dad's doctor was honest, we knew where things were going, but he was willing to get in the fight and battle it out as long as they could. They are not statistics, they are human beings with families and friends and dogs and hobbies who were dealt a crappy hand for no logical reason.

    Laura
    That was So well said Laura and this is a GREAT Support Forum.

    nguyepe we are here and we will listen as this Journey is Very Rough as I too lost My Poppy (Dad) as Laura. My Poppy was Diagnosed with Stage 3 Pancreatic Cancer March 24,2011 (mets on Liver by Step. and now Stage 4) Died Feb.3,2012.

    Will hold Your Dad and his Family in My PRAYERS and THOUGHTS!!!
    daddysgirl32

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    Thank you all... very lucky to have you guys here for support... The surgeon will refer my mum to an Oncologist after she recovers... I'm hoping that we get someone that's patient and caring.

    Thanks again for the support and God bless you all. Hopefully God can hear my prayer

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    Dear Nguyepe,
    When the doctors told my husband that his cancer had metastasized and is placed in such a way that they can't do surgery, I was so afraid for him to do the folfirinox chemo. I had read such terrible things about it-I wondered what kind of life he would have. But, he is doing well. I don't know if it is working at all, but it is palliative. We are leaving for Japan on April 9 for a special vacation. Take your Mum somewhere when she feels better-don't ask, surprise her! Every day is a gift and maybe the treatment will help-even if it isn't a cure. I am sending you all the best wishes, prayers, and hope. I know how hard it is. You are not alone here. Lise
    "May you be held in compassion; May your pain and suffering be eased; May you be at Peace"

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    Hello, and I feel for your situation. I would have hoped, that her doctor would have given her the chemo first. In order to isolate the cancer cells, before attempting the whipple procedure. My wife went through the operation 11 m onths ago. She is getting better everyday; but not without a struggle. I know she would tell you to forget the chemo. She was terribly terribly sick for 2 aggressive years,before her surgery. SHe would never go through the treatment again. If there appesrs to be no hope. I would strongly advise against the treatment. THat is just my opinion. Why have your loved one get sicker. I would say to keep her comfortable, and pain free, and love her every moment. I'll keep her in my prayers. Nick

 
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