Pancreatic Cancer Survivors

dvodola said:

Pancreatic Cancer Survivor
I hope the longest survivor of PC is too old to remember! I was 42 at the time and like most, was told it could not be PC; I was too young and I was a female. I had my surgery in June of 2000; entire pancreas, gall bladder, spleen, and part of my stomach removed. I am, of course, insulin dependent diabetic and have malabsorption problems. I feel WONDERFUL! This is the first time I have joined a blog or even looked at anything like this. A very dear friend asked for information about my surgeon as she was recently diagnosed with stage IV PC. My doctor has retired and is living in 3rd world countries "giving back", so here I am searching for something to help. Truthfully, I was afraid to look not realizing so very many are survivors. How uplifting!

PURPLECANCER said:

Current Pain
I think My husband had the same surgery as you. He didn't get the whipple either, his surgery time only lasted an hour and a half. This was 5-7-08. He has some sort of pain almost everyday. He takes morphine pills 3 times a day and also hydrocordone (sp) in between. Do you have the same discomfort everyday? He is 51. Thanks and prayers to all.

PURPLECANCER said:

Current Pain
I think My husband had the same surgery as you. He didn't get the whipple either, his surgery time only lasted an hour and a half. This was 5-7-08. He has some sort of pain almost everyday. He takes morphine pills 3 times a day and also hydrocordone (sp) in between. Do you have the same discomfort everyday? He is 51. Thanks and prayers to all.

JamesP said:

Hi, I am sorry to hear your
Hi, I am sorry to hear your husband has been afflicted with this terrible disease.

I am now 33 years old and was diagnosed with this cancer on the 13th January 2009 post an ultrasound, CT scan and ultrasonic endoscopy with biopsy. I also went jaundice and had some minor pain for around 4 weeks prior to this. I have made it beyond 6 months and am hoping to beat the odds which I admit are pretty grim. After diagnosis I was slated for surgery (whipple procedure) almost immediately. However, after my sister reviewed the hospital we found this wasn't really a suitable venue as they were considered a 'low volume' facility (mortality rates hit around 17% for these facilities as oppose to less than 1% in high volume facilities). Using leapfrog (http://www.leapfroggroup.org/cp) she found a more suitable facility and we went for a second opinion. Post a detailed CT scan it transpired I was not eligible for surgery due to interference with the major arteries in the pancreas. The surgeon, who has considerable experience, stated that if the tumor was cut into then this would be disastrous. I was extremely upset as this point as my cancer was localized to the pancreas and small intestine and I knew without surgery the prospects are grim. He suggested chemotherapy with the intent of shrinking the tumor to allow surgery. The same day I had that consultation I had an ECRP and stent placement to clear up the jaundice and allow chemo to start (longest 20 days of my life). After around 6 months on gemcitabine and docetaxel under the care of an exceptional oncologist the tumor had shrunk and enabled surgery. I had no spread of cancer and it was still localized. I am 6 weeks and 1 day post surgery. I had no post surgery complications which I believe are a result of the surgeons considerable experience. I also managed to return to my normal type diet on around 6 days after surgery. I am about to start a rad/chemo follow up cycle to ensure there are no 'floaters' in my system (current CT scans suggest this is the case) and hope to be able to be pronounced in the clear at the end of November.

I guess what I have learnt from all this is ensure you are at an experienced facility, don't look too far down the road (generally the course of action is very daunting) and don't give up HOPE. The chemo drugs have really come a long way and Dr's really have a lot in their arsenal. You just have to hope that your body responds well to them and they act appropriately.

I really hope that the chemo acts to shrink the areas that are causing complications in your husband and he is able to undergo a final surgery. There are a number of places in addition to this website to get a lot of info, counseling and help with this cancer type with one of my favorites being www.pancan.org. I find my feelings about things changed a lot after diagnosis and seem to be cyclic. Support of family, friends and work are important and have really helped me. You can expect some changes in your husband as a result of this ordeal as well as yourself as a caregiver. These can be difficult to understand and some of the available materials help to explain what is going on. I wish you all the best and hope you have some good news to post in the near future.

JamesP said:

How i feel
Post surgery I feel a lot better. Prior to this I had been on the chemo and was getting constant fevers which were a result of infection. From the surgeons description it sounded like this was the result of the stent which after 8 months was starting to become blocked and my gall bladder was in a real mess. I don't think I will feel 100% until all my treatments are finished, my power port is removed and the drugs are totally out of my system. My hope is that I will feel 110% as I assume I wasn't myself before as a result of having PC!

I did loose my hair during my first round of chemo on the 3rd session although it did start to come back on the 6th. It has all come back now and seems somewhat thicker. I must admit I wasn't too concerned about my hair in the scheme of things. One thing I would say is that once it starts to come out shave it off. I think waking every morning with hair on your pillow and having clumps come out in the shower is not good psychologically.

I think having a good appetite is a good thing and enables you to keep your strength. This seems to be one of the Dr's main monitors. I hope I can maintain this during my next treatments. When I was diagnosed I had dropped around 13lb. I clawed some of this back and then post surgery gained a lot due to fluid retention (like a 23lb weight swing in 2 weeks). I am currently 8lbs below were I was before this started and have been gaining weight.

I did feel my mood starting to change although this was more of a concern about having my affairs in order. As time went on I did start to have negative feelings and focused on things that weren't constructive. To keep my mind occupied I continued working from home (my work has been extremely supportive) and started something totally new to me as a hobby (playing in the stock market). I must admit the new hobby really helped although I think I bored my wife to tiers with my various strategies. I really enjoyed this as I started following biotechs and could relate to clinical trials along with the results obtained. Maybe your husband could find a new hobby which isn't too strenuous?

Fortunate1 said:

Experiences since Whipple 8 months ago. Malabsorption, hernia?
I'm turning 70 this Oct 2009 and had Whipple eight months ago in Oct 2008. Diagnosis after Whipple was neuroendocrine carcinoma with resection and reconstruction Superior Mesenteric Vein, vascular tumor (3 cm) pancreatic head with extrapancreatic extension, perineural involvement, invasion into SMV, 1 of 5 lymph nodes positive. I've had 6 month checkup and all is going well except for digestive problems--gas, diarrhea, constipation, cramps--and continued loss of weight--now over 50 pounds. I'm still 25 pounds over healthy weight, but the doctor said it's dangerous to lose weight quickly. The doctor prescribed enzymes for malabsorption. I'm getting the hang of them but I'm still learning the foods I have problems digesting even with the enzymes-- salads, anything fried, grilled or breaded, spicy or sour foods, nuts, vegetables that are undercooked. And I've just made an appointment with the doctor because a "bulge" has appeared just under the top center part of my incision. My sweetheart took me on a 3-week cruise recently. Hope I didn't overdo and cause a hernia. I'm happy to have found this site. Best wishes to all of you!

JamesP said:

How i feel
Post surgery I feel a lot better. Prior to this I had been on the chemo and was getting constant fevers which were a result of infection. From the surgeons description it sounded like this was the result of the stent which after 8 months was starting to become blocked and my gall bladder was in a real mess. I don't think I will feel 100% until all my treatments are finished, my power port is removed and the drugs are totally out of my system. My hope is that I will feel 110% as I assume I wasn't myself before as a result of having PC!

I did loose my hair during my first round of chemo on the 3rd session although it did start to come back on the 6th. It has all come back now and seems somewhat thicker. I must admit I wasn't too concerned about my hair in the scheme of things. One thing I would say is that once it starts to come out shave it off. I think waking every morning with hair on your pillow and having clumps come out in the shower is not good psychologically.

I think having a good appetite is a good thing and enables you to keep your strength. This seems to be one of the Dr's main monitors. I hope I can maintain this during my next treatments. When I was diagnosed I had dropped around 13lb. I clawed some of this back and then post surgery gained a lot due to fluid retention (like a 23lb weight swing in 2 weeks). I am currently 8lbs below were I was before this started and have been gaining weight.

I did feel my mood starting to change although this was more of a concern about having my affairs in order. As time went on I did start to have negative feelings and focused on things that weren't constructive. To keep my mind occupied I continued working from home (my work has been extremely supportive) and started something totally new to me as a hobby (playing in the stock market). I must admit the new hobby really helped although I think I bored my wife to tiers with my various strategies. I really enjoyed this as I started following biotechs and could relate to clinical trials along with the results obtained. Maybe your husband could find a new hobby which isn't too strenuous?

Bartrip_Devon said:

Pancreatic cancer
I am amazed to read the stories about survival rates for pancreatic cancer.

My husband (47 at time) was diagnosed last year with pancreatic cancer. He was a fit and well man, never had a day off work. He woke up one morning rather yellow, ended up going to the local hospital for a check with on duty doctor who sent him to the main hospital for tests etc. He ended up having about 4 various operations (major one was to re-plumb his insides) - he has a cancerous tumour in his pancreas at the bottom of the bile duct which cannot be operated on as it is too dangerous and near too many major vessels/organs etc.

He was given 6-12 months to live (so bloody unfair as he has a 6 year old daughter). He has (i think) chosen to be bloody minded about it and really got on with his life, he is out every day, even though he cannot work any more, this, i think, is his way of coping with it. He didn't bat an eyelid when Patrick Swayze died of the same thing. He is having chemo and the consultant is absolutely fantastic and so is the specialist nurse, we couldn't wish for anyone better.


Does anybody out there have any stories of survival of more than 6 months?