Pancreatic Cancer -2015

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.

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

Evelfarmer said:

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

 

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.  

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 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

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. 

hopeful in tally said:

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.

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.

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

 

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..