Pancreatic Cancer -2015

Oneshot
Oneshot Member Posts: 153
edited August 2018 in Pancreatic Cancer #1

Posted this as a new thread for pancreatic cancer for 2015.   I know when I was new on here and trying to navigate the boards to find anything on Pancreatic Cancer , while going through treatments. I had a little trouble finding a post on Pancreatic Cancers . Even after finally figuring it was under Rare and other Cancers.   If nobody posts for a while . The subject falls to the back pages after a bit.

For those that are new to this board and lucky enough to have looked into the Rare and Other Cancers and find this post. You can start here with a post or if you want  you can click on the pages at the bottom and scroll through.   There are some good discusions on older posts . (for those of you who are new.)

Wishing All of You The Best,

Oneshot

«1

Comments

  • Rsquared59
    Rsquared59 Member Posts: 1
    When does your digestive system get back to normal???

    Its been 13 months since my Whipple, 7 months since my last treatment, still clean. Lately, I have become very gassy and for evenlonger, I have 10+ movements a day. Does anyone else have these issues? Most nights I have to get up 3-4 times, which does not make for a solid night's sleep. Can anyone further down the rode than me tell me if this will ever change? I am active playing hockey and volleyball, working full time and generally doing whatever I want. I'm just getting tired of having so many movements. Please advsie.

  • rebelwhg1
    rebelwhg1 Member Posts: 8

    When does your digestive system get back to normal???

    Its been 13 months since my Whipple, 7 months since my last treatment, still clean. Lately, I have become very gassy and for evenlonger, I have 10+ movements a day. Does anyone else have these issues? Most nights I have to get up 3-4 times, which does not make for a solid night's sleep. Can anyone further down the rode than me tell me if this will ever change? I am active playing hockey and volleyball, working full time and generally doing whatever I want. I'm just getting tired of having so many movements. Please advsie.

    Rsquared59 i'm going on 6

    Rsquared59 i'm going on 6 years now and i still get severe cramps alot , mostly within hours after eating and still run to the bathroom sometimes up to 4 or more times a day, are you on the drug creon?  they put me on it and it does help

  • Oneshot
    Oneshot Member Posts: 153
    rebelwhg1 said:

    Rsquared59 i'm going on 6

    Rsquared59 i'm going on 6 years now and i still get severe cramps alot , mostly within hours after eating and still run to the bathroom sometimes up to 4 or more times a day, are you on the drug creon?  they put me on it and it does help

    Creon

    Creon does seem to make it a little more tolerable.

  • cowboy200994
    cowboy200994 Member Posts: 1
    survisors

    Well i just made it a year  after whipple surgery !   Smiling Here  Cancer seem to do you in mentally more so then it does physically. I am still reeling from how the doctor told me i had this cancer,he sd to me while i was complaining about something else He sd well that is the least of your worries you got pancreatic cancer and you only have about ten to a month to live. I still say wow !  Other doctors i have had to deal with seem not to wanna spend the time answering my questions. It angered me so that i just wanted to give up,i wouldn't even do the chemo or anything else. I findly got my head together and figure out i love my boys who are grown so much i would fight this cancer and i need to get my head right first and get back to being my positive self and it has worked ! Everyday i wakeup i just feel like i am lucky and i try to start the day off with positives and continue that way for that day. Still tryin to get knowledge about what i am dealing with is the reason i found this site. Would like to talk to others and maybe we can inspire each other also and maybe getmore understanding about what we are dealing with and maybe some answers  !  

  • Oneshot
    Oneshot Member Posts: 153

    survisors

    Well i just made it a year  after whipple surgery !   Smiling Here  Cancer seem to do you in mentally more so then it does physically. I am still reeling from how the doctor told me i had this cancer,he sd to me while i was complaining about something else He sd well that is the least of your worries you got pancreatic cancer and you only have about ten to a month to live. I still say wow !  Other doctors i have had to deal with seem not to wanna spend the time answering my questions. It angered me so that i just wanted to give up,i wouldn't even do the chemo or anything else. I findly got my head together and figure out i love my boys who are grown so much i would fight this cancer and i need to get my head right first and get back to being my positive self and it has worked ! Everyday i wakeup i just feel like i am lucky and i try to start the day off with positives and continue that way for that day. Still tryin to get knowledge about what i am dealing with is the reason i found this site. Would like to talk to others and maybe we can inspire each other also and maybe getmore understanding about what we are dealing with and maybe some answers  !  

    congrats on 1 yr.

    Congradulations Cowboy200994,

         I feel that almost anyone who is told they have cancer,much less Pancreatic cancer, feels as if they not only had all the wind knocked out of their sails. But had the mast torn down and hit the rocks. All at the same time.  Then after the intial shock has passed a little. Each individual finds a different way to look at and deal with the news.

    This site has some interesting perspectives from a lot of folks. Unfortunately, Pancreatic cancer posts are sort of hidden in RARE and OTHER CANCERS. If none post on the pacreatic threads for a while . It goes down the list . Untill it gets to the back pages.( NOTE: page numbers at bottom of the threads)  I say this  so you can also look back at many posts from the past. ( I didn't notice them for a while when I 1'st logged on to this site. Guess chemo had me a bit foggy?)

    As far as finding out what you are dealing with.  All I can say is.... everyone has many different experiences when dealing with cancer and it's treatments. It can range from good to down right bad.  The good side is you are still here!  No matter what other issues are involved.  In my case I look at it as a trade off. Most anything is better than the alternative!  I've learned to laugh at myself and realize I have been blessed.  Even on the bad days!

    I don't get on here as much as I used to but I do check in to see if the pancreatic posts are on the first page. So they can be found a little bit easier. ( I hope).

    Prayer to you and your family,

    Oneshot.

    stage3 pancreatic cancer survivor . 7 yrears

  • ScottieDigital
    ScottieDigital Member Posts: 1
    2 year survivor here

    Hello all, My name is Scott. I was diagnosed in 2013 with Stage IIb and it was on the verge of III as my lymph nodes got hit and it even caused acute liver failure. I lost my job, my home and while I was healing, my son's mother was killed and i had to send him away because I couldnt even take care of myself. i have never asked for a handout or anything of the sort, but I was told since this was Pancreatic Cancer month that I should start a simple page to ask for donations to help rebuild my life. I am 38, with a degree in technology and 20 years experience, but it was extremely hard to compete and I want to start my own company and pass something on to my son one day.

     

    <Content Removed by CSN Support Team>

     

    i appreciate the support

     

     

  • Evelfarmer
    Evelfarmer Member Posts: 2
    Nueroendrocrine Pancreatic Cancer

    I was recently diagnosed with stage 3 nueroendrocrine pancreatic cancer. 

    May 2014, I went to the hospital with the worse stomach pain I had ever had. It was only after a month of the pain that I finally went and that was due to the fact that I fell because my legs went numb and I couldn't get back up from the floor. I honestly thought my back had locked on me, even though I have never had back trouble.

    I had MRI, scans X-rays bloodwork and ultra sounds done. I went home with a prescription of percosets and a diagnoses of Acute Pancreatitis with lesions. 

    Faat forward to November 2014 and I started losing weight and being really sick all the time. Again hospital visit after hospital visit I was told I had acute pancreatitis sent home with pain killers. By January 2015, I went from 169lbs to 103. I thought maybe I was depressed or stressed because I was going to school, working full time, was a single mother, homeschooled and was just always busy. 

    By July 2015, I had to quit my job because I couldn't stop vomiting after days of being sick. I couldn't stand I was swollen and still losing weight. Again my pancreas was acting up. It wasnt until October that the pain got so terrible I honestly thought I was going to die of a heart attack and drove myself to the hospital with chest pain, vomiting, diaherria, headache and the left side of my body numb. I was admitted and given IV fluids for hydration because I was dehydrated. My blood pressure was 169/126 I must be having a heart attack. No, it was just the pain radiating causing it. 

    I was told that day I had cancer. the doctor literally came in to talk about my chemo and radiation treatments and scheduling them ASAP. I cried and was confused (still do at times but it's from anger) when I told him I didn't know what he was talking about he contacted the ER doctor they admitted me to break the news to me. Too late. I was pretty devastated. I was told they looked at my original MRIs and saw that I had cancer in the back part of my pancreas which has now spread to my lymph nodes and apparently the tumors might have hit a nerve or wrapped around blood vessels, that's what's causing my pain. 

    Since my diagnoses I was transferred to another hospital, dealing with new doctors and they refuse to release me to the other hospital. I'm ok with that to be honest. 

    That's my "hey you got cancer" story. Now? I'm searching for anyone with this type of cancer that can give me a little insight. Until now, I will admit I never heard much about pancreatic cancer. Thought the oncologiat insist on telling me it's the same type of Cancer Stebe Jobs had. I am the horrible patient that constantly reminds them he's dead and that doesn't bring me much comfort. 

    I will not be having a whipple done, I don't know what my procedure is called. All I know is they will be removing half of my pancreas, my spleen, lymph nodes,  probably my bile duct and emptying out the left side of my body. Yeah it doesn't bring me comfort to know that either. My surgery is scheduled for November 19 2015. I'm scared. I've never had a reason for major surgery. Besides the birth of my children, I had never stayed in a hospital before. Now I can't seem to stay out of them.

    the pain is sometimes unbearable. It takes the air right out of me. They have me on infusion treatments 4 times a week for hydration and all my pain medication  I stopped going a few weeks ago because they forgot to mention how I'd be a walking zombie and I wouldn't be able to hsve bowel movements, causing a whole new series of pain and ailments I call unmentionables. I was on a Phentanol patch 25mg, 60mg of Morphine every 4 hours, OxyContin every 6. Did I mention I'm 5'4 and lost 13 pounds while in the hospital for 2 weeks?

    I'm so mad! I'm not mad at anyone just feel like my life is on pause. I can't work go to school and driving is uncomfortable. I'm tired all the time. I have no appetite by I'm told to gain weight so I try to eat at least baby food because it didn't hurt my stomach as much. 

    I guess I want to know how normal is all I am feeling? I don't feel like I'm getting much support lately. I went from being independent to depending on people and that's annoying. Though I am grateful because I just don't have the strength to do it all myself. I was told not to read anything about cancer, not to think about it and to eat whatever i felt like it without regrets. I liked that part because who doesn't like chocolate cake at 3am? 

    I consider myself extremely fortunate because that which is killing me is saving me and has literally gotten on my nerves but it doesn't stop me from questioning a lot of things especially what comes next

    originally, I was scheduled to have recitation 5 days a week and chemo 7 days a week. I was cleared by the radiation team but not chemo, at least not yet I guess. my oncologist and surgeon told me I will be given a series of exams 31 days after my surgery and we will know what comes next.

     

    Anyone out there with this type of cancer or surgery? 

    research hasn't left me feeling confident in anything right now. I feel like I see and hear about pancreatic cancer all the time Since my diagnosed and I will admit it's bed a few days since I'd actually dived into finding out about my cancer because I don't want to be ignorant about it and not finding out more just frustrated me. 

    At the moment, I feel a rollercoaster of emotions. It's like I'm being pulled and spread thinner than I'd like. I'd love to know more about it all but I want it first hand. From someone who had been their not a statics report  

    thank you for taking a moment to read this and for all going through this I pray for healing, answers and a cure

    Eve 

     

     

     

     

    Im

     

  • Oneshot
    Oneshot Member Posts: 153

    Nueroendrocrine Pancreatic Cancer

    I was recently diagnosed with stage 3 nueroendrocrine pancreatic cancer. 

    May 2014, I went to the hospital with the worse stomach pain I had ever had. It was only after a month of the pain that I finally went and that was due to the fact that I fell because my legs went numb and I couldn't get back up from the floor. I honestly thought my back had locked on me, even though I have never had back trouble.

    I had MRI, scans X-rays bloodwork and ultra sounds done. I went home with a prescription of percosets and a diagnoses of Acute Pancreatitis with lesions. 

    Faat forward to November 2014 and I started losing weight and being really sick all the time. Again hospital visit after hospital visit I was told I had acute pancreatitis sent home with pain killers. By January 2015, I went from 169lbs to 103. I thought maybe I was depressed or stressed because I was going to school, working full time, was a single mother, homeschooled and was just always busy. 

    By July 2015, I had to quit my job because I couldn't stop vomiting after days of being sick. I couldn't stand I was swollen and still losing weight. Again my pancreas was acting up. It wasnt until October that the pain got so terrible I honestly thought I was going to die of a heart attack and drove myself to the hospital with chest pain, vomiting, diaherria, headache and the left side of my body numb. I was admitted and given IV fluids for hydration because I was dehydrated. My blood pressure was 169/126 I must be having a heart attack. No, it was just the pain radiating causing it. 

    I was told that day I had cancer. the doctor literally came in to talk about my chemo and radiation treatments and scheduling them ASAP. I cried and was confused (still do at times but it's from anger) when I told him I didn't know what he was talking about he contacted the ER doctor they admitted me to break the news to me. Too late. I was pretty devastated. I was told they looked at my original MRIs and saw that I had cancer in the back part of my pancreas which has now spread to my lymph nodes and apparently the tumors might have hit a nerve or wrapped around blood vessels, that's what's causing my pain. 

    Since my diagnoses I was transferred to another hospital, dealing with new doctors and they refuse to release me to the other hospital. I'm ok with that to be honest. 

    That's my "hey you got cancer" story. Now? I'm searching for anyone with this type of cancer that can give me a little insight. Until now, I will admit I never heard much about pancreatic cancer. Thought the oncologiat insist on telling me it's the same type of Cancer Stebe Jobs had. I am the horrible patient that constantly reminds them he's dead and that doesn't bring me much comfort. 

    I will not be having a whipple done, I don't know what my procedure is called. All I know is they will be removing half of my pancreas, my spleen, lymph nodes,  probably my bile duct and emptying out the left side of my body. Yeah it doesn't bring me comfort to know that either. My surgery is scheduled for November 19 2015. I'm scared. I've never had a reason for major surgery. Besides the birth of my children, I had never stayed in a hospital before. Now I can't seem to stay out of them.

    the pain is sometimes unbearable. It takes the air right out of me. They have me on infusion treatments 4 times a week for hydration and all my pain medication  I stopped going a few weeks ago because they forgot to mention how I'd be a walking zombie and I wouldn't be able to hsve bowel movements, causing a whole new series of pain and ailments I call unmentionables. I was on a Phentanol patch 25mg, 60mg of Morphine every 4 hours, OxyContin every 6. Did I mention I'm 5'4 and lost 13 pounds while in the hospital for 2 weeks?

    I'm so mad! I'm not mad at anyone just feel like my life is on pause. I can't work go to school and driving is uncomfortable. I'm tired all the time. I have no appetite by I'm told to gain weight so I try to eat at least baby food because it didn't hurt my stomach as much. 

    I guess I want to know how normal is all I am feeling? I don't feel like I'm getting much support lately. I went from being independent to depending on people and that's annoying. Though I am grateful because I just don't have the strength to do it all myself. I was told not to read anything about cancer, not to think about it and to eat whatever i felt like it without regrets. I liked that part because who doesn't like chocolate cake at 3am? 

    I consider myself extremely fortunate because that which is killing me is saving me and has literally gotten on my nerves but it doesn't stop me from questioning a lot of things especially what comes next

    originally, I was scheduled to have recitation 5 days a week and chemo 7 days a week. I was cleared by the radiation team but not chemo, at least not yet I guess. my oncologist and surgeon told me I will be given a series of exams 31 days after my surgery and we will know what comes next.

     

    Anyone out there with this type of cancer or surgery? 

    research hasn't left me feeling confident in anything right now. I feel like I see and hear about pancreatic cancer all the time Since my diagnosed and I will admit it's bed a few days since I'd actually dived into finding out about my cancer because I don't want to be ignorant about it and not finding out more just frustrated me. 

    At the moment, I feel a rollercoaster of emotions. It's like I'm being pulled and spread thinner than I'd like. I'd love to know more about it all but I want it first hand. From someone who had been their not a statics report  

    thank you for taking a moment to read this and for all going through this I pray for healing, answers and a cure

    Eve 

     

     

     

     

    Im

     

    Hopefully surgery went well.

    Eve,

    I read your post well after your schedualed surgery date and hoping this finds you on the road to recovery.

     

     You said you were not going to have the Whipple done. So I am not familiar with the surgery you have just had.

    As far as your emotions, weight loss and physical pains you experience. I can totally relate!   Your emotions are pretty much the norm at this point. Not unless you happen to be someone who is in complete denial. " ROLLER COASTER" of emotions is a pretty good discription. To say the least.  For the person who has pancreatic cancer and those around them.   I might add it's very normal to be scared!   To get over being scared senseless. I had to give it a different twist. As weird as it may sound I looked at my pancreatic cancer as a school yard bully who wanted to take my lunch away.   "You might get my lunch ,but I'm going to get the piece of cake!"  And so the "fight" was on!  Through the surgeries before the Whipple, loss of weight 175lb. to 110lb. in 1 month, chemo and rads before the Whipple, a backpack with a J-tube for food ( i couldn't eat and keep it down.), then the Whipple it's self, and chemo afterwards and several endiscopes<sp> aftewards for ulcers.  Due to rads and chemo. And Yes I do know what you mean by feeling like a zombie! As well as looking like one I might add!  I learned to use humor to deal with a lot of issues from all that.  Sometimes the humor was sort of dark even. But humor was one of the few things this monster was not going to take from me!  I realize each person has to do what works for them though.

    As far as what you are able to eat...Anything you can keep down!  I had to keep trying for months to eat. Even though I had a feeding(J) tube. Just to make sure my muscles for swallowing would work later on. While I had the feeding tube I did find I could drink BOOST.  but that was the only thing I could patially keep down for several months.  Later on, I oddly enough, I found out I could eat a few thin mint girls scout cookies and drink a little grape juice. This was the only thing I could stomach at that time. Couldn't tell you how many boxes my wife bought!   But what ever food works for you until you get an appetite <sp> back go for it!   In my case it took some time to be able to eat regular foods as well as finding out what I can no longer eat. But, remember each person can have a totally different experience when dealing with pancreatic cancer and it's treatment(s).

    As far ask you asking dr.'s lots of questions. NOTHING WRONG with that! in fact keep a notebook handy for questions you might have for them while at home. Because there will be so much going on emotionally and physically you might forget to ask them when you see them later on.

    Hopefully this helps you some. I will try to get on this site a little more often to see how things are going.

    Keeping you and your family in my prayers

    Oneshot

  • northa914
    northa914 Member Posts: 100

    Nueroendrocrine Pancreatic Cancer

    I was recently diagnosed with stage 3 nueroendrocrine pancreatic cancer. 

    May 2014, I went to the hospital with the worse stomach pain I had ever had. It was only after a month of the pain that I finally went and that was due to the fact that I fell because my legs went numb and I couldn't get back up from the floor. I honestly thought my back had locked on me, even though I have never had back trouble.

    I had MRI, scans X-rays bloodwork and ultra sounds done. I went home with a prescription of percosets and a diagnoses of Acute Pancreatitis with lesions. 

    Faat forward to November 2014 and I started losing weight and being really sick all the time. Again hospital visit after hospital visit I was told I had acute pancreatitis sent home with pain killers. By January 2015, I went from 169lbs to 103. I thought maybe I was depressed or stressed because I was going to school, working full time, was a single mother, homeschooled and was just always busy. 

    By July 2015, I had to quit my job because I couldn't stop vomiting after days of being sick. I couldn't stand I was swollen and still losing weight. Again my pancreas was acting up. It wasnt until October that the pain got so terrible I honestly thought I was going to die of a heart attack and drove myself to the hospital with chest pain, vomiting, diaherria, headache and the left side of my body numb. I was admitted and given IV fluids for hydration because I was dehydrated. My blood pressure was 169/126 I must be having a heart attack. No, it was just the pain radiating causing it. 

    I was told that day I had cancer. the doctor literally came in to talk about my chemo and radiation treatments and scheduling them ASAP. I cried and was confused (still do at times but it's from anger) when I told him I didn't know what he was talking about he contacted the ER doctor they admitted me to break the news to me. Too late. I was pretty devastated. I was told they looked at my original MRIs and saw that I had cancer in the back part of my pancreas which has now spread to my lymph nodes and apparently the tumors might have hit a nerve or wrapped around blood vessels, that's what's causing my pain. 

    Since my diagnoses I was transferred to another hospital, dealing with new doctors and they refuse to release me to the other hospital. I'm ok with that to be honest. 

    That's my "hey you got cancer" story. Now? I'm searching for anyone with this type of cancer that can give me a little insight. Until now, I will admit I never heard much about pancreatic cancer. Thought the oncologiat insist on telling me it's the same type of Cancer Stebe Jobs had. I am the horrible patient that constantly reminds them he's dead and that doesn't bring me much comfort. 

    I will not be having a whipple done, I don't know what my procedure is called. All I know is they will be removing half of my pancreas, my spleen, lymph nodes,  probably my bile duct and emptying out the left side of my body. Yeah it doesn't bring me comfort to know that either. My surgery is scheduled for November 19 2015. I'm scared. I've never had a reason for major surgery. Besides the birth of my children, I had never stayed in a hospital before. Now I can't seem to stay out of them.

    the pain is sometimes unbearable. It takes the air right out of me. They have me on infusion treatments 4 times a week for hydration and all my pain medication  I stopped going a few weeks ago because they forgot to mention how I'd be a walking zombie and I wouldn't be able to hsve bowel movements, causing a whole new series of pain and ailments I call unmentionables. I was on a Phentanol patch 25mg, 60mg of Morphine every 4 hours, OxyContin every 6. Did I mention I'm 5'4 and lost 13 pounds while in the hospital for 2 weeks?

    I'm so mad! I'm not mad at anyone just feel like my life is on pause. I can't work go to school and driving is uncomfortable. I'm tired all the time. I have no appetite by I'm told to gain weight so I try to eat at least baby food because it didn't hurt my stomach as much. 

    I guess I want to know how normal is all I am feeling? I don't feel like I'm getting much support lately. I went from being independent to depending on people and that's annoying. Though I am grateful because I just don't have the strength to do it all myself. I was told not to read anything about cancer, not to think about it and to eat whatever i felt like it without regrets. I liked that part because who doesn't like chocolate cake at 3am? 

    I consider myself extremely fortunate because that which is killing me is saving me and has literally gotten on my nerves but it doesn't stop me from questioning a lot of things especially what comes next

    originally, I was scheduled to have recitation 5 days a week and chemo 7 days a week. I was cleared by the radiation team but not chemo, at least not yet I guess. my oncologist and surgeon told me I will be given a series of exams 31 days after my surgery and we will know what comes next.

     

    Anyone out there with this type of cancer or surgery? 

    research hasn't left me feeling confident in anything right now. I feel like I see and hear about pancreatic cancer all the time Since my diagnosed and I will admit it's bed a few days since I'd actually dived into finding out about my cancer because I don't want to be ignorant about it and not finding out more just frustrated me. 

    At the moment, I feel a rollercoaster of emotions. It's like I'm being pulled and spread thinner than I'd like. I'd love to know more about it all but I want it first hand. From someone who had been their not a statics report  

    thank you for taking a moment to read this and for all going through this I pray for healing, answers and a cure

    Eve 

     

     

     

     

    Im

     

    PNET

    I sent you a private message. I too have that "Steve Jobs Cancer", and am currently on the only treatment that has been successful for me.  This type of cancer is unlike pancreatic cancer, and depending on the type you have (well differentiated or poorly differentiated, slow or moderately growing) you could potentially live with it instead of dying from it.  

  • Oneshot
    Oneshot Member Posts: 153
    bump

    Just bumped to get back up the list to be found if needed

  • sayuri2016
    sayuri2016 Member Posts: 2
    PanCan husband Stage4 mets to liver

    My husband diag 10-2015. Unresectable so no whip surgery. At first cancer was everywhere in his GI area. Head tail pancreas, 5 spots on liver, ascites, hepatic valve. 2Nd PET was better. Reduced to half and ascites gone. 3Rd PET just a wks ago and it looks like all spots n liver has cleared yet only the blood vessels enlarged n liver. He feels better as we went on a trip n he had more energy than I. Praise God!!!!!

    What's the most bothersome thing tween us is for myself n our kids, blended, (he has 3 n so do I and about all the same age), is the moodiness. He can be very wretched with us all. B4 cancer he was a loving n caring n compassionate person. Now it's trying to figure when the jekyl/Hyde will show up n how long. I have many moments when I need him for simple 2 minute need (and only when he is feeling better will I ever ask if him anything for myself). But I did, and unfortunately a sports game was on and it wasn't pretty. I hat gotten sick n had an accident n asked him to help me change sheets n I was told that the game was on n wanted to watch it. I was floored n hurt n I regret it now, n I released my anger n hurt all in about 60 seconds.... I told him I have been here for him through it all n wiped his butt n bathed him n loved it with no complaints.... I have never felt so all alone. I told him I should have added to the viws, in sickness n health except sports... I made him leave n go back watching tv. I told him I can't believe my ears! That night I cried n cried. Begged God to heal him. 

    Out marriage was Rocky b4 n I feel its not going to survive. I try to talk to him but he is so hateful n right about everything. 

    When we didn't know about his last PET, he was going to buy his child a car who won't be driving about 2-3 yrs. And he promised $ to my child who is driving. He told her against my will. Things happen n good intentions hardly get done n I don't want my child have another person n her life to disappoint her. Now the extra $ is all gone for neither of the intended wishes. And he is persistent to go on n buy for his son when we can't afford the extra expense.

    We needed a van n we got that. Used. But he still insists getting his child a smart car which we will drive. We can't afford. His wishes is breaking us. And when he gets $ he wants to spend it. I handle the $ the finances. I know his meds. I go to every Dr. apptment. I started doing all chemo til his family felt left out and I stopped going to chemo and let his siblings take turns.

    I go to school partime and work at school part time through federal work study. I'm almost finished with school. December this yr I'll be doing my externship. He n his family support me to finish school. I feel guilty being away from him but his family stays with him. I feel left out but then I try not to be personal. I do the cooking and the kids help with chores. His family help with groceries, finances before he got on disability. Now we face that disability gives a paycheck but we had to get charitable fund for free to help wipe the chemo bills out and we have Medicaid insurance for us , the kids. But we don't have prescription insurance. And that's a killer. He needs his morphine n Compazine for nausea. He ordered something off tv that hasn't came thru the bank acct and he won't cancel it so we can afford his meds. I'm frustrated. Please help me. He is doing much better with cancer meaning the cancer is going away. Am I being selfish staying in school til things turn for the worst? B4 He got disability my fws check was all we had steady coming in. If I pause school then there goes my check too. I'm not close with his family. I feel they r trying to replace me and really it's bc I'm not there cause of school. And he listens to them instead of me with decisions. When I found out from people who know what they r talking about. Not just believing hearsay from family. That's why we r n problems with disability. He won't listen. I tell him when his apptmnt are. I had to let him miss one apptmnt cause he was adamant about when it was. I go to all his followups from TESTS and followups from how chemo is going. His family takes him to get the pump removed.

    We have no life insurance. So if things turn for the worse, I don't know what to do. I'm trying to stay n the moment n prepare for the worst. What can I do. What should I do? How do I communicate with my husband when it's hard to relate what either of us is feeling. He is dying and I'm left behind. His life is shortening and itt is robbing me of my husband. I want to scream! Help!

    Oh we have been together for 4 yrs and almost married for 2 yrs. 

  • Oneshot
    Oneshot Member Posts: 153

    PanCan husband Stage4 mets to liver

    My husband diag 10-2015. Unresectable so no whip surgery. At first cancer was everywhere in his GI area. Head tail pancreas, 5 spots on liver, ascites, hepatic valve. 2Nd PET was better. Reduced to half and ascites gone. 3Rd PET just a wks ago and it looks like all spots n liver has cleared yet only the blood vessels enlarged n liver. He feels better as we went on a trip n he had more energy than I. Praise God!!!!!

    What's the most bothersome thing tween us is for myself n our kids, blended, (he has 3 n so do I and about all the same age), is the moodiness. He can be very wretched with us all. B4 cancer he was a loving n caring n compassionate person. Now it's trying to figure when the jekyl/Hyde will show up n how long. I have many moments when I need him for simple 2 minute need (and only when he is feeling better will I ever ask if him anything for myself). But I did, and unfortunately a sports game was on and it wasn't pretty. I hat gotten sick n had an accident n asked him to help me change sheets n I was told that the game was on n wanted to watch it. I was floored n hurt n I regret it now, n I released my anger n hurt all in about 60 seconds.... I told him I have been here for him through it all n wiped his butt n bathed him n loved it with no complaints.... I have never felt so all alone. I told him I should have added to the viws, in sickness n health except sports... I made him leave n go back watching tv. I told him I can't believe my ears! That night I cried n cried. Begged God to heal him. 

    Out marriage was Rocky b4 n I feel its not going to survive. I try to talk to him but he is so hateful n right about everything. 

    When we didn't know about his last PET, he was going to buy his child a car who won't be driving about 2-3 yrs. And he promised $ to my child who is driving. He told her against my will. Things happen n good intentions hardly get done n I don't want my child have another person n her life to disappoint her. Now the extra $ is all gone for neither of the intended wishes. And he is persistent to go on n buy for his son when we can't afford the extra expense.

    We needed a van n we got that. Used. But he still insists getting his child a smart car which we will drive. We can't afford. His wishes is breaking us. And when he gets $ he wants to spend it. I handle the $ the finances. I know his meds. I go to every Dr. apptment. I started doing all chemo til his family felt left out and I stopped going to chemo and let his siblings take turns.

    I go to school partime and work at school part time through federal work study. I'm almost finished with school. December this yr I'll be doing my externship. He n his family support me to finish school. I feel guilty being away from him but his family stays with him. I feel left out but then I try not to be personal. I do the cooking and the kids help with chores. His family help with groceries, finances before he got on disability. Now we face that disability gives a paycheck but we had to get charitable fund for free to help wipe the chemo bills out and we have Medicaid insurance for us , the kids. But we don't have prescription insurance. And that's a killer. He needs his morphine n Compazine for nausea. He ordered something off tv that hasn't came thru the bank acct and he won't cancel it so we can afford his meds. I'm frustrated. Please help me. He is doing much better with cancer meaning the cancer is going away. Am I being selfish staying in school til things turn for the worst? B4 He got disability my fws check was all we had steady coming in. If I pause school then there goes my check too. I'm not close with his family. I feel they r trying to replace me and really it's bc I'm not there cause of school. And he listens to them instead of me with decisions. When I found out from people who know what they r talking about. Not just believing hearsay from family. That's why we r n problems with disability. He won't listen. I tell him when his apptmnt are. I had to let him miss one apptmnt cause he was adamant about when it was. I go to all his followups from TESTS and followups from how chemo is going. His family takes him to get the pump removed.

    We have no life insurance. So if things turn for the worse, I don't know what to do. I'm trying to stay n the moment n prepare for the worst. What can I do. What should I do? How do I communicate with my husband when it's hard to relate what either of us is feeling. He is dying and I'm left behind. His life is shortening and itt is robbing me of my husband. I want to scream! Help!

    Oh we have been together for 4 yrs and almost married for 2 yrs. 

    A site to check out .

    Sayuri2016,

     I 'm giving you this PanCan site to check out.  It has lots of info about pancreatic cancer and support people  to help those that are care givers as well as pancreatic cancer patients .  While CSN is a great site and has lots of info ( look at the side bar to the left) 

    This site www.pancan.org  is just for pancreatic cancer.  I hope it can help you and your family in some way. 

    Keeping you and your family in prayers,

    Oneshot

  • kmcarrera
    kmcarrera Member Posts: 1
    Oneshot said:

    A site to check out .

    Sayuri2016,

     I 'm giving you this PanCan site to check out.  It has lots of info about pancreatic cancer and support people  to help those that are care givers as well as pancreatic cancer patients .  While CSN is a great site and has lots of info ( look at the side bar to the left) 

    This site www.pancan.org  is just for pancreatic cancer.  I hope it can help you and your family in some way. 

    Keeping you and your family in prayers,

    Oneshot

    Pancreatic Cancer and now a liver lesion

    HI, My dad, who is now 73, had distal pancreatectomy in Nov. 2014... he went in to remission until Aug. 2015, the cancer returned in the lining of the pancreas, he is back on chemo, he just had a scan which showed a small liver lesion 1.2cm, that is suggestive of metastatic, which means its cancer.... Does anyone have any unfortunate experience with this, or any insight?  AS of now, all his organs, and lungs are free of cancer, and it is contained.  Wondering what options he will have to kill the lesion in the liver.  I read about the Y-90 and RFA = Radio Frequency Ablation... Any info would be greatly appreciated.  Thanks. 

  • Oneshot
    Oneshot Member Posts: 153

    When does your digestive system get back to normal???

    Its been 13 months since my Whipple, 7 months since my last treatment, still clean. Lately, I have become very gassy and for evenlonger, I have 10+ movements a day. Does anyone else have these issues? Most nights I have to get up 3-4 times, which does not make for a solid night's sleep. Can anyone further down the rode than me tell me if this will ever change? I am active playing hockey and volleyball, working full time and generally doing whatever I want. I'm just getting tired of having so many movements. Please advsie.

    Gas and such

     

    Rsquared,

      1'st congratulations on your remission.

    There are a number of factors that differ for each of us ,who have  undergone the Whipple surgery and  survived pancreatic cancer.   I'm not sure what all was operated on or removed during your Whipple.  I had a lot of things removed or partially removed.  As well as 18 inches of small intestine.   In my case  gas is a physically painful issue most of the time , to this day!   Not as often as it was during the first couple of years after the surgery but, it is just an issue I have learned to live with.  Sometimes, it is so painful and causes muscle cramps.  I have to lay across my bed to put pressure on my abdomen until the gas decides which direction to exit.  Hopefully, you are not experiencing gas pains quite as bad. If you drink through a straw or chew gum. You can cause yourself to have more gas!  So my dr. and dietitian told me right after my surgery. Also, keep in mind. You had a major jostling of a lot of sensitive internal organs. If everything goes well during and after the Whipple. It still will take months for everything inside you to get back to something  considered  somewhat normal.

    Diet can have a lot bearing on gas and bowel movements.   I understand your comment about going 10+ times a day.   In my case they are pretty much back to normal.  I wish I could give you a time line. But, as I mentioned before.  Everyone's  experience can be so different.  I had chemo after the Whipple also. So, in my case it might have had a lot of bearing on how long before my movements were back to normal. Not to mention what meds or enzymes might be different. It took me close to 1-1/2 yrs. I had to get my body used to certain foods again and realize, even though I felt way better (considering everything).  I had to eat in smaller amounts and learn to stop eating well before I felt I was getting to that "close to being full" point.   It is sort of a trial and error type experiment. I now can eat anything that, doesn't bite me first and stomach it all pretty well!   I just make sure I stop before I even think I'm getting close to being full.  I figure I can always eat a little more a while later!

    You might bring this up with your oncologist and ask for a dietitian also. That is in case you don't have a dietitian already.  My dietitian was a great help to me!

    Hope that helps  or gives you some insight .

    Glad to hear you are so active that quickly after your Whipple.   

     

    Oneshot 6+yr. survivior

  • Oneshot
    Oneshot Member Posts: 153
    rebelwhg1 said:

    Rsquared59 i'm going on 6

    Rsquared59 i'm going on 6 years now and i still get severe cramps alot , mostly within hours after eating and still run to the bathroom sometimes up to 4 or more times a day, are you on the drug creon?  they put me on it and it does help

    just a note

    Rebelwhg1,

    Wanted to see how you are doing and if you check the board much anymore. 

    Not to mention bumping a thread on pancreatic cancer up to the front page for new folks.

    Hope this finds you doing well in 2017

    Take Care and GOD BLESS,

    Oneshot

     

  • hopeful in tally
    hopeful in tally Member Posts: 56

    My brother was recently diagnosed with pancreatic cancer.  Thankfully, location of cyst/tumor created symptoms to assure early detection.  Stint unblocked bile duct and now waiting for biopsy report.  Someone ... please help.  I had breast cancer in 2010 and found such support in this Discussion Board.  My brother needs that advice and support now.  Please ... any advice?  Hope to be candidate for whipple and will go to Shands in Gainsville to find out.  Where did you have surgery?  Any advice andor information you can provide to help my brother on this journey he is beginning?  Thank you in advance.

  • Captainr
    Captainr Member Posts: 1

    My brother was recently diagnosed with pancreatic cancer.  Thankfully, location of cyst/tumor created symptoms to assure early detection.  Stint unblocked bile duct and now waiting for biopsy report.  Someone ... please help.  I had breast cancer in 2010 and found such support in this Discussion Board.  My brother needs that advice and support now.  Please ... any advice?  Hope to be candidate for whipple and will go to Shands in Gainsville to find out.  Where did you have surgery?  Any advice andor information you can provide to help my brother on this journey he is beginning?  Thank you in advance.

    Pancreatic

    I am sure Shands has good surgeons. I go there for radiation treatments.  You may want to check out Moffitt Cancer Center in east Tampa. They are a nationally designated Cancer Center and are rated number six in the nation. These nationally designated centers are usually on the cutting edge of research And experience.  A second opinion never hurts. Also there is Mayo Clinic in Jacksonville. I think they are rated number three in nation.

  • rebelwhg1
    rebelwhg1 Member Posts: 8

    When does your digestive system get back to normal???

    Its been 13 months since my Whipple, 7 months since my last treatment, still clean. Lately, I have become very gassy and for evenlonger, I have 10+ movements a day. Does anyone else have these issues? Most nights I have to get up 3-4 times, which does not make for a solid night's sleep. Can anyone further down the rode than me tell me if this will ever change? I am active playing hockey and volleyball, working full time and generally doing whatever I want. I'm just getting tired of having so many movements. Please advsie.

    Rsquared59

    as far as i know the digestive system never goes back to normal, i had my whipple in 2009 and my dr. put me on creon for my digestive system, he told me i will have to be on the creon the rest of my life, it does work. i use to go many times a day but now i take 3 creon with every meal and i'm down to 1 or 2 times a day.. hope this helps..

  • rebelwhg1
    rebelwhg1 Member Posts: 8
    edited April 2017 #20
    Oneshot said:

    just a note

    Rebelwhg1,

    Wanted to see how you are doing and if you check the board much anymore. 

    Not to mention bumping a thread on pancreatic cancer up to the front page for new folks.

    Hope this finds you doing well in 2017

    Take Care and GOD BLESS,

    Oneshot

     

    oneshot

    yes i'm doing very good considering, i myself dont get on here very much, going on 8 years now and pretty much back to my old self.. still worry when its time for my next scan as i;m sure most all do... hope all is going good with you...god bless..

  • elpaso_dude
    elpaso_dude Member Posts: 1
    Thank you

    I am glad I found this site tonight. I am mostly alone, trying not to be, and this pancreatic cancer site is helping already. I was diagnosed about 2 months ago, but the Doctor that did the Endoscopy Ultrasound says it probably started more than 7 months ago, and I still have not found out what stage I am. My GI doctor told me that they found a spot on my spine as well but he highly doubts it is cancer since it is very rare that pancreatic cancer spreads to bone tissue. We shall see. I started my chemo yesterday and am doing exactly what all the doctors say for me to do. Right now I am trying to take care of everything for my family, and none of my daughters know yet until I know exactly what stage and a good idea of how much time I have left. Reading some of the posts on here I can say has brought me hope, and a good window into this terrible disease. I just have to say that all my doctors, the nurses, the techs, the RN's the receptionists are the nicest people in the medical field. They make me feel very comfortable and are the most informative. I will visit from time to time to update my information of where I am at, but just want to leave a little something for you, I understand what you are going through and hope only the best. I am completely open to suggestions and will always keep an open mind to all of you. I consider you my brothers and sisters. And I will "Never Give Up" until it is my time. Thank You!