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Pancreatic Cancer

PURPLECANCER's picture
PURPLECANCER
Posts: 11
Joined: May 2009

I would like to know if there is a pancreatic cancer discussion board or if anyone knows where I can find one.

PURPLECANCER's picture
PURPLECANCER
Posts: 11
Joined: May 2009

Is there anyone who was to far advanced to have the whipple done? My husband is stage 4, and a year ago they did a non whipple. He suffers from pain everyday of the week. Is this normal?

jcandler
Posts: 7
Joined: Jun 2009

PurpleCancer,

I am not sure what a non whipple is, but I had a whipple done 3/05. To this day, I experience pain in my stomach/colon. I have lost all sensation of hunger and also when I am full. My oncologist believes this is a result of my radiation/chemotherapy treatments. There doesn't seem to be anything that can be done about it. The level of pain varies. Sometimes I am in pain for hours and other times just for a short time. I do have some pain medication for the more severe times, but normally I try not to take anything. I am not sure if this is normal or not since I have never met anyone else who has survived this disease. I will gladly answer any questions I can based on my experiences, since I know it is hard to find out the right information.

krisbe
Posts: 1
Joined: Jun 2009

I had a Whipple done on Nov. 13, 2008. I know it has only been almost 7 months but I have pain a great deal of the time, especially after eating. I don't know of anyone that has had this surgery to know what is normal or not. Did you have a lot of abdominal swelling/ If so, how long did it take to go away? My stomach is still swollen and often as hard as a rock. The pain is usually on the front left an my back.
Thanks!

PURPLECANCER's picture
PURPLECANCER
Posts: 11
Joined: May 2009

I had the non-whippple. Basically it is a replumbing. They removed my gall bladder and ran tubes directly from the pancreas and liver to my duodenum (upper small intestine). Whipple was not possible because my tumor had attached itself to the blod vessles that pass through it. That was done in May '08 and took 20 staples to close up. I still have some pain every day, some days are mild and some are real bears. I take 60 mgs of slow release morphine 2 or 3 times per day and can boost it with liquid morphine or hydrocodone if things get hairy but I haven't done that for months. I didn't have a lot of swelling but it seemed like forever until my guts settled in and untangled so I could have semi-normal bowel movements. That's what I blamed my hard stomach and back pain on, backed up bowels. I still take the generic Mirulax laxative every 3 to 4 days and it helps me alot. I don't know exactly what those surgeons do while we are "under" but I felt like a punching bag. After surgery I had about 17 radiation sessions and some chemo. At that point my CA19-9 counts went from 2000+ down to 78 (cool, huh?). Now, unfortunately, they are going up again. I'm told my only option is whether or not to take more chemo. Chemo makes me feel much worse than the cancer so I don't know what to do. I also take vitamin B-6 every day...several people have told me it's good for the immune system (it can't hurt and it's cheap!)

1chron1611
Posts: 6
Joined: Jun 2009

My husband had the same in March of this year. He just finished his 10th treatment of Chemo(Gemzar) and we are waiting to get another scan, his last scan showed the cancer went into his liver. His tumor grew from 4cm to 7 cm in a matter of two months. Honestly I cry everyday because I'm not sure if chemo is doing any good except making him nauseated. He had 3pints of blood on Tuesday after his 10th rd of chemo. The nurses assured me that he would be perking up but I see none of that. He is still sort of out of it due to his red cell count being so low and again honestly the nurses throw all these numbers at us and we have no idea what they mean. He wanted to do the chemo all though we knew deep down there was a possibility it would do no good. Yet he had to try, now we wait for the new scan to be scheduled, read then the results. Can I ask you how long you have had Pancreatic Cancer? If I sound like a pessimst I don't mean to, just where I am right now. I feel like a horrible caregiver and the guilt is awful. He stays really positive most of the time which helps me
thanks

fergiefive
Posts: 1
Joined: Feb 2010

My husband seems to be following the same road as your husband. If you are still reading here, and you don't mind I would like to know how your husband has progressed. My husband was diagnosed with pancreatic cancer March 09. Initially, borderline resectable Stage III which quickly moved to Stage IV with metastisis (even with chemo). Now liver met has grown to 7 cm, just had to get 3 pints of blood on Tuesday due to weakness and low red blood cell oount. Sound familiar? We have tried 3 different kinds of chemo. Nothing has helped a bit. Did you ever find anything that helped (medically speaking)?

Traveller
Posts: 1
Joined: Apr 2010

My husband is also similar. We are in Australia and on a USA based trial with Gemzar and Abrazane.

Diagnosed Stage IV in Nov 09 following Septic Shock, we have followed the same path ~ transfusions, infections, enzymes, vitamins and .....

Fortunately the chemo combo seems to be working well as makers are well down and tumour has reduced by half.

We know this is only pallaitive, but he is in no pain and has no real side effects except very tired for a couple of days after chemo. He will receive the 2nd dose of the 4th cycle on Friday. He has three weeks on, one week off and after 14 weeks of travelling 400+km a week to the chemo centre, he is heartily sick of the whole thing.

I think he is suffering more emotionally than physically at the moment although he is still very weak from the Septic Shock.

cheers

kiki1
Posts: 1
Joined: Mar 2010

Hi! My one and only sister was diagnosed w/ tumor of the pancreasin Nov.'09 and supposedly has to undergo whipple surgery but they opted of going home first to find herbal remedies.now in Feb.2010,she had a bypass surgery in Canada since the surgeon was available only that day.She is in a lot of pain,has loss of appetite,constantly moving her bowel or vomiting after eating.Her surgeon advised her to get herself stronger first prior to getting a chemo as a palliative treatment.Did your hubby has to wait first before getting a chemo?Is this the only treatment,any radiation therapy?Is this daily tx for 3 weeks?Pls advised.I don't want to lose my sister that soon.Thank you

gus111z
Posts: 11
Joined: Jan 2011

Hi

I suggest you take a look at this

http://www.pawpawresearch.com/stories.htm

stage 2a PC - successful Whipple's/ gemcitabine+pawpaw

All going well at this stage.

jcandler
Posts: 7
Joined: Jun 2009

I also have pain after eating at times. My problem stems from not having any sensation of hunger. Due to this, I have no ideal of when I am full. What I try to do is limit how much I eat at one time. There have been times that I knew I was eating too much and was going to pay for it, but the food was so good, I said what the heck. The only food item I know that will cause me problems is chocolate. I can only eat about 1 1/2 of the snack bars at a time. As for all other types of food, some times I have no problem and other times the same food will make me sick. The doctors believe this is because of the radiation treatment, chemtherapy and surgery. They have bascially told me there isn't anything they can really do. I was fortunate not to have any swelling. My surgery was 4 years ago and I still have problems from it.

gwen66
Posts: 3
Joined: Jun 2009

I am so glad to hear from someone else who has had the same experience as I have. I had a Whipple in Nov. of 2008 with follow up chemo and radiation ( I am still getting Gemzar) The pain in my belly is explained by the surgeon as being due to chemo-by the oncologist as being due to surgery- and the radiation oncologist as being unrelated to radiation. But I still have it, especially after eating. You are so correct, sometimes I don't have feelings of hunger and at other times I don't want to stop eating. If I give in a eat more that a small portion, I will have pain.
Thanks for posting it really helps.
gwen66

JTMueller
Posts: 1
Joined: Jun 2009

Hello there,

First off, to all out there that are fighting Pancreatic Cancer, my heart goes out to you. My father has Stage 4 Pancreatic cancer, and is undergoing chemotherapy right now. He's been doing that for about six months. We'll find out soon where the tumor is. About six week ago they had done a scan, and things had at least been neutralized.

The biggest problem is we can't get him to eat much of anything. I know the loss of appetite is one of the side effects, and he has tremendous stomach pain sometimes. But some days he will eat NOTHING for a large chunk of hours. We have a hard time getting him to eat, and that only zaps his strength. Does anyone out there have suggestions how to motivate him here? We're at our wits end.

nancyj_pa
Posts: 20
Joined: May 2009

JT,
Will your father try Ensure or Boost? Maybe drinking would be easier on him. After his Whipple, my husband only wanted Carnation instant breakfast, pudding cups (the refrigerated kind in a 6-pack), fruit cups, etc. His taste buds weren't working well for a while and he felt full very quickly.

You can leave small snack items that he used to enjoy close to him and see if he'll pick at them. Forcing or coaxing just doesn't work. He needs to be in control.

This is such a difficult disease both for the patient and the caregiver. Just being there for him is all you can do right now. You can look for more suggestions on the Johns Hopkins Pancreatic Cancer website. It is very active and has lots of good ideas and info.

Nancy

jepperlein
Posts: 1
Joined: Apr 2010

You are so right, Nancy! Your husband sounds just like me. I could not stomach even a slice of toast while recovering at home after having the Whipple performed at Johns Hopkins May 6, 2009. My wife couldn't get a thing down me, but Carnation istant breakfast and Ensure is the very best way to get nutrients and vitamins. Dr. Michael Choti was my surgeon and he was absolutely fabulous! I thank God each day for life! Jim

lorir1104
Posts: 2
Joined: Jul 2010

Hi there,
My dad was recently diagnosed with Pancreatic Cancer as well (in April). Luckily, it hasn't spread anywhere but due to the location of the tumor and the fact that it's wrapped itself around the main blood supply, it's inoperable at this time.

He signed up for a clinical trial, which was basically more agressive radiation treatment along with chemo. He did really well through the treatment (5 weeks of radiation every day, plus weekly chemo), but about a week after he finished, he got pretty sick. He drank a lot of Ensure to keep his strength up. He had NO appetite at all. He also said that when he eats, sometimes the pain is worse - which makes him not want to eat.

First off, I think your dad needs to get his pain under control. Mine takes an extended release morphine tablet (12 hour), then has fast acting morphine pills to take for breakthrough pain. They can also give your dad meds to help stimulate his appetite as well as enzymes to help with processing the food. My dad was recently put on these because of the horrible gas (burping), and they think it's because the pancreas isn't producing enough enzymes.

Make the call to the doctor and see what they have to say. Best wishes to you and your family as you go through this. It's so hard to watch the ones you love suffer. My heart goes out to you.

mommamouse
Posts: 1
Joined: Feb 2011

I was just recently diagnosed with pancreatic cancer 3 weeks ago, it seems that your dad has a similiar case like mine, my tumor is 2.5 cm but is encased around the blood vessels and i have a blood clot in the portal vein which makes it inoperable at this time, I started xeloda orally on tuesday and have to take it for 14 days and i start the infusion for the first time tomorrow. I am taking oxycodone for the pain but sometimes the pain is too much. I hardly have an appetite, But I have to eat to keep up my strength, Good luck to your family

colon no more's picture
colon no more
Posts: 12
Joined: Jan 2011

I have a friend who has pancreatic cancer. She took chemo to shrink it before they could operate. They took out her pancreas and spleen. now she is taking more chemo. I wish you the best and hope your pain eases. I cannot begin to relate to your illness, but I did have colon cancer 3 years ago, so I can relate alittle to the CANCER word. Again good luck with your treatment.

PURPLECANCER's picture
PURPLECANCER
Posts: 11
Joined: May 2009

I had the non-whippple. Basically it is a replumbing. They removed my gall bladder and ran tubes directly from the pancreas and liver to my duodenum (upper small intestine). Whipple was not possible because my tumor had attached itself to the blod vessles that pass through it. That was done in May '08 and took 20 staples to close up. I still have some pain every day, some days are mild and some are real bears. I take 60 mgs of slow release morphine 2 or 3 times per day and can boost it with liquid morphine or hydrocodone if things get hairy but I haven't done that for months. I didn't have a lot of swelling but it seemed like forever until my guts settled in and untangled so I could have semi-normal bowel movements. That's what I blamed my hard stomach and back pain on, backed up bowels. I still take the generic Mirulax laxative every 3 to 4 days and it helps me alot. I don't know exactly what those surgeons do while we are "under" but I felt like a punching bag. After surgery I had about 17 radiation sessions and some chemo. At that point my CA19-9 counts went from 2000+ down to 78 (cool, huh?). Now, unfortunately, they are going up again. I'm told my only option is whether or not to take more chemo. Chemo makes me feel much worse than the cancer so I don't know what to do. I also take vitamin B-6 every day...several people have told me it's good for the immune system (it can't hurt and it's cheap!)

lostlove89
Posts: 1
Joined: Jun 2009

Hello,
Please look into the Lustgarten Foundation, they are wonderful. My husband died about seven years ago, and I can not seem to feel any better about it. I noticed your papilion, I have one too. God bless you and your loved one, this is a terrible cancer, I wish you the best.

dara
Posts: 2
Joined: Apr 2010

Kim, I just wrote to complain about some pain--but I want you to know that it has been totally manageable, and that I got through the Whipple just fine. Of course it's scary to encounter something new, but with a good doctor and support, I know you'll be just fine.

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