Cancer Survivors Network

Yes, Mine was also the AMPULLAR OF VADAR, I am encouraged greatly by your answer, thanks.

Wow. You have got to get a hold of this article, made available by a friend in June, 2003, or 4 moths after Alice's surgery. I'll give you the details of where to find the research. Here is the statement of hope:

"This review focuses on the management of periampullary pancreatic adenocarcinoma that is localized and resectiable. Althought patients with this subset of tumors constitute only 15% to 20% of patients with pancreatic cancer, these are the only pancreatic cancer patients for whom treatment is clearly curative in intent. Wow!

Article is: Therapy for Localized Pancreatic Adenocarcinoma: One, Two, or Three Modalities?
By Peter W.T. Pisters, MD, Vincent J. Picozzi, MD, and Ross Abrams, MD. Address reprint requests to Peter W.T. Pisters, MD, Department of Surgical Oncology, Unit 444, The University of Texas, M.D. Anderson Cancer Center, 1515 Holcombe Blvd, Houston, TX 77030-4009. email: ppisters@mdanderson.org

I am about to undergo the Whipple Procedure. Can you tell me from your experience what I will face? I have a 3 cm muscinuos cyst in the head of my pancreas. PET scan shows potential for caner around the outer rim of this cyst. I am a 56 year type 2 diabetic in outerwise good health.

I hope you are doing well....I am sure you have had your procedure by now. I had mine done almost a year ago....i made it 6 mo with no signs of growth and now i am hoping to make it to one year....I am 31 years old and had a tumor the size of a softball at the head of my pancreas...the whipple was tough and i had complications such as my wound did not heal like it was supposed to and i had to have a wound vac for many months...I developed a blood clot in my lung and was in the hospital for a week and then on blood thinner for 6 months....but all in all i feel so much better now...i will say a prayer for you and i hope you are doing well!!!

thank you for you reply, even though you are having a tough time of things, I wish you well, and hope you are doing better now then back in July. Thanks

I am glad you are well. My mom was just diagnosed. Do you know of any resources for alternative oncologists in the Milwaukee, WI area or just a resource board?
thanks

im in wisconsin i dont know of any alternative however i have a great oncologist and great surgeon i go to the clinical cancer center at froedtert, feel free to contact me if u have any questions, i just finished my chemo jan 5th, im am concidered cancer free

thank you for your reply, and your mom had to be a real trooper. My wife's mother battled cancer for 2 and half years (lung) and I know my wife was in a lot of pain watching mom go through this. Condolences on your mom, and thank you for replying. god bless your future.

I saw your post regarding pancreatic cancer and the anguish your wife went through with her Mother. I want her to know that strides are being made in Lung Cancer research every day. I should know because I am almost a 5 year NSCLC survivor (May 2005 - May 2010) with no evidence of disease. My Mother also passed away 20 years ago from lung cancer.

Have you seen any info anywhere regarding pancreatic cancer clinical trials? I have a friend that is inoperable and we will try almost anything at this point.

God bless you both.

Madelyn

I saw your post regarding pancreatic cancer and the anguish your wife went through with her Mother. I want her to know that strides are being made in Lung Cancer research every day. I should know because I am almost a 5 year NSCLC survivor (May 2005 - May 2010) with no evidence of disease. My Mother also passed away 20 years ago from lung cancer.

Have you seen any info anywhere regarding pancreatic cancer clinical trials? I have a friend that is inoperable and we will try almost anything at this point.

God bless you both.

Madelyn

Surgery done @ MD Anderson, Aug.2006. Report in Feb. 2011 shows still cancer clear. Are there others my age, 84, black male that are survivors?

Dear 2005david, I have a dear friend recently diagnosed with pancreatic cancer who had the Whipple operation. He is now going to MD Anderson and wants me to find a survivor who can talk with him. I promised him a church today to find survivors. He needs encouragement. Can you help?

Hi blackmumbo,
I was recently diagnoses with pancreatic cancer and had the whipple operation 7 weeks ago. I am starting my chemo regimens next week. I will also have radiation in about 3 months. I don't know if I can help, but would like to try..maybe we can help each other. sounds like we are pretty much going through the same thing.

My boy friend was recently diognosed with stage four pacreatic cancer surgery cannot be done they put a stent in his liver he is only fortyseven yrs old now i praying chemo and radiation will shrink the softball size tumer he has .he is realitivly healthy.these stories hav given me hope

Did you mom give up on life at all? My mother was diagnosed last Christmas and they cannot take it out. She was told that it would be "quality over quantity" and that she would be undergoing chemo the rest of her life. Recently though it feels as if she is just giving up on life. I don't know what to do - if anything. I know if she would try to enjoy what time she has left then she would last longer. But to get her in that mindset, I have no clue. What did you do with your mother in the days of illness? In the good days? I can't seem to get her to go outside at all, except to Dr. appts. I can't even seem to get her to shower anymore, or to put on makeup and to feel good about herself. I just want to help, but ultimately I don't know how. If you have any suggestions, it would be greatly appreciated.
Tori

I had a friend that suffered with inoperable lung cancer that did the same thing your Mother is doing. He cried all day long and couldn't get it together sad to say. She lived a whole year past her diagnosis and I just wish she could have "made some happy memories" with her husband and kids instead of retreating into herself.

I know how hard cancer can be because I am close to being a 5 year survivor of lung cancer and I have no evidence of disease in my body. New things are happening every day.

Ask the social worker at your Mother's oncologist office about clinical trials, transportation to a major cancer research hospital (MD Anderson, Sloane-Kettering, etc.)

God bless you and your family,

Madelyn

hey,
so im sorry your mom didnt make it, im gonig through my grandpa fighting pancreatic cancer. the doctors gave him weeks to live its now been over a year he was diagnosed christmas eve 2008, its really hard to see him go through it adn the doctors gave him no hope to live they said chemo would give him a couple weeks at the most but he would be sick the whole time. he is still always sick and tired and hurting.

what i am wondering is how did you do it, i go to sleep each night wondering if my grandpa will make it through the night and wake up every morning praying he did adn will make it another day. its not easy and i know he isnt my father but he has acted like it adn has been there for me more then my dad or mom, i just dont know how to keep dealing with it and if there is anyway to help him????

i know this doesnt help anyone wondering who the longest survivor is and i would like to know also but cant figure it out yet.

-audrianna

I had my whipple done on 07-08-08. i was in hospital for 3 weeks. i am at home now recooping. i am sore. where my jp was it still leaks i have a large bandage over it. the doctor thinks it's an infection ????. on meds for it. just went to oncologist yesterday, boy did not know just how much doctors don't know about ampular cancer. my tumor was at the base of my duct. doctor said i caught it early. oncologist said caught early and more then likely all gone, even though it invaded two nodes. however she recommended 5 types of chemo for 6 months 1 day a week. i go in for pet scan next week even though i'v had three mri's and ultras in past three month. i pary for all and all with this cancer...john

hi,
i just want to say that i have the greatest respect for people that go through this.My father in law was diagnosed 3 weeks ago.they told us that it was just a tumor on his pancreas but then when he had surgery we were told that they could not go through with the surgery becuse the tumor spread to the walls of the stomach and a small stamp on his liver.This is concidered stage 4 right?We have been told that right now the best thing to do is to start thermodynamic therapy combined with chemotherapy.Is there a chance that the cancer cells could go away with this therapy?Do you know if there is a possibility that they could operate on a patient with this prognosis?We still cannot beleive that this is happening.He was the most healthy person i know,never had a cold in his life.He is 50 years old and has so much to live for.Seeing your story has given me so much hope.....

I was told before my surgery that if they found cancer on my liver at the beginning of my surery that they would not proceed with the whipple because they could never remove all the cancer and it was best to heal up so I could begin chemo. Fortunately for me that wasn't the case.

There is always a chance the chemo will get rid of the cancer so go for it! My prayers are with your father in law.

My friend (a 51-year old single Mom with a 15 year old son) has inoperable Pancreatic Cancer and we are looking for clinical trials. Have you seen anything promising out there? She cannot have surgery because the tumor is on the duct going toward the kidneys and their is a pleural effusion on top of the tumor. She also does not have insurance because she could not afford COBRA when she lost her job. We're working on that with Medicaid.

Any help would be apprciated.

Madelyn (5 year lung cancer survivor)
My husband Joe is a 7 year prostate cancer survivor!

In answer to your question of why isn't Pancreatic Cancer on the main page, well I hated it too when they changed it. It used to be a main category and when it was changed to be under Rare and other cancers I felt hopeless. Here I am freaking out about Pancreatic Cancer and all of a sudden this cancer which is killing my husband is insignificant. How can they do that to me? But there it is, nothing I can do about it. I don't think you are lucky, I think god has decided to give you his grace, use it in good health. Sherry

I wondered that too when my husband was diagnosed with Stage IV Pancreatic Cancer. I didn't have time to do a full search of the site when there were many more available websites to research. He only survived 23 days. Diagnosed 15 August 2008 - passed 7 September 2008. This desease SUCKS!!!! We need more research on PC.

Hi SueBIE2,
My heart goes out to you. My husband was just recently diagnosed with stage 3 pancreatic cancer. How did he pass away so quickly? Where all had the metastisies spread to? What was his age? I am so sorry that your time was so limited.
LindaNuc

Really happy to note that you have survived 9 years after surgery. I would like to know more about the tratment you had undegone, the present medications an dieatary habits. It would be of grat help and a morale booster to me a I had undergone a whhiple's procedure for neuro endocrine carcinoma on the head of my pancreas in December 2007.

B.Selva Kumar

i too was told the cyst on my pancreas couldn't be anything because it was small. i insisted on having it tested it took 1 year but the doctor then was all appolgies because the cea markers are 8995 considered high and it is suggested i need whipple. i am having a hard time with this, in canada you don't get appt fast is this something i should be concerned about and try to get over to detroit or do i have time to wait? does anyone know how this spreads. is this again early detection better chance at cure?

hi hopeful53, i also have pancreatic cancer and was told that i would b cancer free after whipple op. i had intense chemo and raditaion for 3 mths i then did chemo every 4 weeks i had pet scan and was told i was all clear, then pain started again and more test were done and it was in my liver, doctor gave me 3 mths. i then saw another doc who preformed the probe which
is a big needle inserted into my liver and killed the tumor, that was oct 08 kept up with chemo and now it is in my lungs and back in my liver, but there are 3 tumors in liver one is on the main artery called the vera cava its the size of a tennis ball, the other 2 are 5cm and 2cm. my doc gave me 2 mths if he treated with chemo or i could have radition beads inserted straight into the tumors in which i did, i had that done 8 weeks ago feeling okay now my tumor maker is 53. the tumors in my lungs are laying dormant. i take a drug called tarceva (Erlotinib)100mg 1 each morning in which i have been on since jan09 it stops the oxegione feeding the tumors, i beleive this drug has kept me going for so long, im also 53 and hope to be around a while yet, just beleive in yourself, stay postive even if u get bad news, always talk to family and friends and dont stop living, Good Luck and my prayers r with u Janine

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!

Hi,

My Mom had the Whipple August 6 of this year and also complains of terrible cramps and gas, especially in the evening and at night. I was wondering if you have had any improvement since your post in May.

Hope that you are doing well.

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.

This is Carli, she is also my husbands caregiver. We got her as a pup shortly after his surgery. She is wonderful. Great companion and only weighs 6 lbs. She jumps up on him and it doesn't hurt too bad. She makes us smile and helps distract from the 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?

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.

well, good on you! Lets hope everything goes ok.

My husband has another 2 sessions of chemo, will then see the Consultant, then I think she will be sending him for a scan, he will then see her again after that do discuss whether he will have more chemo or just wait and see. I am not sure whether they would operate or not, I guess, this is something I will have to ask the Consultant.

So, tell me, how do you feel in yourself? I would say that my husband has lost weight (after his op he was only allowed to sip water for 9 days, even thouth the hospital menu looked good), but now he is home, he has a fantastic appetite - I would say he eats a load more than what I do, which can't be bad. He hasn't lost his hair, it has just thinned a little and I suppose a bit straighter! His mood has changed, but I would say that that is more due to the fact that he is not allowed to work which is so unlike him, I have never known him to be off work. He is moody with our daughter, wants things done NOW and not in five minutes time.

I would be interested to hear how you and anyone else gets on in the future. It's a horrible waiting game.

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?

Hi there

You lot really amaze me, you have been battling this awful illness, to which there is no real 'proper' cure and here you are ...... battling on, defeating the odds.

My husband is into shooting, he has 2 trained springers and is out with them twice every day. He is the sort of guy that you cannot keep indoors, it drives him mad having to stay in. The worse time was when he came out of hospital after his big op and he wasn't allowed to drive, luckily, I get full sick pay and took a month off to look after him.

Everything is a waiting game at the moment and I will post some more news when I have some.

Keep strong.

Hi, I said I would report back to you if and when we received any more news on my hushands condition.

Well, we went back to see the Consultant yesterday, expecting her to send him for another CT scan to see how things are progressing and then see her again for a follow up. Well, her Registrar examined him and asked numerous questions (when we could understand him because he was Hungarian). When the Consultant came back into the room she had decided that as he is doing so well, had no side effects from any of the Chemo whatsoever, no real hair loss-just thinning, fantastic appetite and put on some weight that they would leave him alone for three months - we could ring them if we feel we needed to. They decided that if they sent him for the scan, it would add more anxiety and worry for no reason which would not be fair on either of us.

We are going to celebrate our daughters birthday in two weeks time (7 yrs) and have a brilliant Christmas and forget about everything until the new year, so at least we can relax a little until then.

I would be interested in hearing how all of you out there are coping with this illness.

I guess the majority of people on this site are from US (sorry if I am wrong), they seem to do things differently here in UK.

Dear friend, I'm very happy for you and your family about the good news that your husband is feeling and looking better.

Being in the UK gives you an advantage over us here in the States since around 40% of patients in the UK seek for alternative medicine.

Even though the doctor told you not to go back for 3 months. Believe me; Pancreatic Cancer is one of the fastest growing kind. even 1 month of not taking proper care of it could be a big problem. So, just get that Monthly Blood Work and don't lose track of the desease. Just do that, tell your doctor you want that blod work. It would not affect your husband at all and you'll be able sleep better at night. Do not let go. even if the doctor says he doesn't need it. YOUR FAMILY NEEDS IT..! Remember it's not anyone's family or the doctor's family we're talking about it is YOURS and that's what matters the most to you. If she denies you the tests, look for another doctor immediatly.

My best regards to you and blessings to you and your family.

When my father 61 typed 2 diabetic was diagnosed with PC in Costa Rica, he came back to the US to hear bad news from the VA hospital. He was given 2 months to live (the most). No other medical treatment was given to him by the conventional medicine. No surgery no nothing. They gave up on him and sent him home to die.

I took him to a private clinic with lots of success in treating almost all types of cancer.
The Issels Clinic in Santa Barbara. www.issels.com . After his 4 week treatment, my father regain his strengh and most of his blood levels whent back to normal. the cancer maskers imrpoved between 50% and 90% in four weeks.

His doctors (the same that sent him home to die) could no believe it. They ran another blood work on him and they came out even better.

Now, our mission was to get the VA to perform this blood work once a month to keep track on the cancer and the rest of his blood levels. The doctors at the VA did not help us. We lost track and my father died 7 months after his was diagnosed.

So, without the conventional treatments we did acomplished what seemed to be impossible and incredible to anyone. My advise to you is, Don't just rely on orthodox medicine. This doctors at the Issels Clinic are graduated certified and licensed phisycians that know what they are doing.

I am not saying most MD's don't know what they have to do in order to treat a PC patient. But the reality is that there is a huge diference in their approach to deal with such terrible desease. One doctor wants to treat you and the other one plans to help you get cured. HUGE difference.

If my dad had gotten the help from his MD's at the hospital, we would've probably still have him around telling you more about all of this. He fought and died with his boots on...

My best regards to you and best of wishes. Be strong and if you can or have the financial possibility seek to get help from the clinics I mentioned.

Also try looking at www.cancercenters.com Believe me when I say, there is more we all can do to beat Cancer...

Hello,
Do you know of a resource for finding alternative oncologists in our area of Milwaukee, WI?

thanks

Any idea how to find highly recommended oncologists for treatment of PC? Looking for one in the DFW area!

I'll highly recommend mine to you! I'm a stage 3 pancreatic cancer survivor. (26 months)
Oncologist- Andrew D. McCullum. Located at: Texas Oncology (Big Baylor, Dallas)
3535 Worth St.
Dallas, Texas 75246-2006
Phone # 214-370-1000

If surgery is needed (Whipple). I recommend Jeffery Lamont.
If radiation is needed. Dr. Cheek
If endoscope is needed. Dr. Mallat
Sorry I don't the phone #'s to the last three but, Dr. McCullum's office knows them well. I'm sure they would be happy to give them to you if you ask them. I had everything done at that address (Baylor). The whole staff there, from the check in ladies,nurses, lab techs and etc. were GREAT! They all made a very miserable situation as comfortable as humanly possible.

I know you just asked about an oncologist,but,with PC being the issue. I wanted to make sure and cover all the bases!

Take Care and GOD BLESS!
Oneshot

I had the Whipple done 9 Oct 09 for a tumor placed just like your husband's. It was supposed to take six hours but due to the fact that my arteries are not arranged like 90% of the population and severly limited access to the pancreas, it took 11 hours. The surgeon said that the only time the artery misplacement would affect a person is if they need the Whipple procedure. He NEVER considered not operating. The tumor was removed and no lymph nodes/organs were affected.

I urge you to find a surgeon that will operate! I wish you the best and will pray for your husband.
Mike

Last Thursday evening (15-Oct-2009) my wife was diagnosed with pancreatic cancer. The tumor is 3.9 x 4cm in diameter located in the head of the pancrease and at this time can not be removed because of a blood supply. Now this all new to me however it is encouraging to read some of these stories on here how people have had treatment and were able to get the tumor removed and have lived longer than probably expected. I do realize we have very tough road ahead but this is at least some encourging new.

Thanks

Don't just rely on Orthodox medicine....

When my father 61 typed 2 diabetic was diagnosed with PC in Costa Rica, he came back to the US to hear bad news from the VA hospital. He was given 2 months to live (the most). No other medical treatment was given to him by the conventional medicine. No surgery no nothing. They gave up on him and sent him home to die.

I took him to a private clinic with lots of success in treating almost all types of cancer.
The Issels Clinic in Santa Barbara. www.issels.com . After his 4 week treatment, my father regain his strengh and most of his blood levels whent back to normal. the cancer maskers imrpoved between 50% and 90% in four weeks.

His doctors (the same that sent him home to die) could no believe it. They ran another blood work on him and they came out even better.

Now, our mission was to get the VA to perform this blood work once a month to keep track on the cancer and the rest of his blood levels. The doctors at the VA did not help us. We lost track and my father died 7 months after his was diagnosed.

So, without the conventional treatments we did acomplished what seemed to be impossible and incredible to anyone. My advise to you is, Don't just rely on orthodox medicine. This doctors at the Issels Clinic are graduated certified and licensed phisycians that know what they are doing.

I am not saying most MD's don't know what they have to do in order to treat a PC patient. But the reality is that there is a huge diference in their approach to deal with such terrible desease. One doctor wants to treat you and the other one plans to help you get cured. HUGE difference.

If my dad had gotten the help from his MD's at the hospital, we would've probably still have him around telling you more about all of this. He fought and died with his boots on...

My best regards to you and best of wishes. Be strong and if you can or have the financial possibility seek to get help from the clinics I mentioned.

Also try looking at www.cancercenters.com Believe me when I say, there is more we all can do to beat Cancer...DO NOT LOSE TRACK OF THE DESEASE FOR AT LEAST A YEAR...every month run a Blood work to determine the remission or regression.

As of Feb 15,2010 I will be a 39 year Pancreatic cancer Survivor. God has Blessed me in the last 39 years and I know every day that I wake up is another gift from Him. I was 21 years old when I had emergency explorirory surgery, due to pain and shadows on two sets of extensive x-rays. I was in surgery for 12 hours and when the doctor finished sent me to ICU and told my parents that I would not make it 24 hours, but God was not finished with me and I made it not just 24 hours but like the energizer bunny I'm still going. I have no signs of diabetis, but do have some problems digesting spicy or gressy foods so I stay away from them.

L. Denton

Joe
What a Blessing. My mom was also diagnosd with pancreatic cancer and is a living walking miricle of God's work. She has been cancer free for 16 years now. I am thankful for everyday that I am able to see her.She have al been blessed to have her in our lives. The doctors told us as well that there was no hope but here she is 16 years later. She ias diabetic and has a few other issues but she got to see both of her daughters grow up and have her grandbabies who she loves more than any thing.

Vickie

hi jill just wondering how you are doing after your ct scan and too let u know i will be thinking of you on the 8th

Hi Jakesman

I would just like to say a BIG thank you for recommending the website above, it is very very interesting. I am not sure if you have read the previous comments from me about my husband, who is suffering from pancreatic cancer? As the article states, stay away from salty foods etc, well my husband does tend to like his salt (the only thing I put salt in is when I am boiling potatoes) but he adds extra to his dinner - YUK!!! He is also partial to bacon, sausages and sometimes ham (which is also stated in the article).

On a more positive note, my husband is really enjoying his life at the moment, everyone is saying how well he looks (doesn't look ill at all) and enjoying his life to the full. Again, thank you for the above site.

Bartrip_Devon (UK)

I hope your husband turns out ok - good to hear he's enjoying his life.

Now, I'm not a doctor or an expert on this stuff. I don't even know someone personally who's going through pancreatic, so take my post with caution. Make sure you check it out with a doctor before deciding to go with the diet.

I am, however, very fascinated by cancer "cures" and hate cancer with a passion. So if I helped one person by making a post, it's worth it a billion times over.

God bless :)

My husband was diagnosed with Pancreatic Cancer last month. We went in with what we thought was food poisoning and came out with this Cancer.
He becaume jaundiced and we flew from St Petersburg, Russia, where we were living at the time for work reasons to Malta.
In Malta, he was hospitalised and on IV. We were operated on, the intentiin was a whipple proceedure. The surgeon could not do it because he said the tumour - was sitting on a artery or vein. He did a double bypass instead to relieve him of the jaundice.

So we cam out, not clear, depressed, very confused and wondering what to do.

Tyhe surgeon and oncologist have told us that the plan is to shrink the tumour a little to make it operable and then to remove it.

We are undergoing a five week course of daily radiotherapy and once per week chemo (Gemzar).

I would like to know if anyone else has gone through this and any tips and advice.

If so, how long before you had the operation before chemo/radio treatment ended? I am asking because I am nervous and want to know if there is a risk of spread after the treament or if we could have an option to carry on with chemo up until the operation?

We are really down and depressed. We jave no support network here and are completely alone.

Hi NuNu123 -

It sounds like you are in a desperate situation. I will do my best to assist.

I just came down with Pancreatic adenocarcinoma. Thatis what my PET scan said. The surgeon did NOT want to operate because it metastasized to my lung. They say that once you remove the primary tumor that the others proliferate. I am NOT sure if I should push the surgeon to operate or just stay in a current clinical trial I hope to get into son. View;
http://clinicaltrials.dfhcc.harvard.edu/trials/1397 Hopefully, I plan to say and do well with this. The surgeon said he'll operate if I see him again in a year. So, follow-up with him to see if things are okay. I just went thru 3 month of chemo and radiation at Brigham and Womens hospital in Boston, MA I stayed at the Aztrazenica ACS Hope Lodge at 125 S. Huntington Ave. In Jamica Plain, MA/ There phone number is 617-396-5500 Try 617-396-5514 to actually speak to a person. I give you this info. to intice you to get to this part of the USA. I think you were in Russia. I do NOT know the medical arena well there but feel your desperateing would best be handled here.

The best of luck and note I tried,

Cary

Just diagnosed with pancreatic cancer. First appointment with oncologist verified the CT scans. Return on Tuesday for PET scan and then followup appointment on Friday. I have every hope of beating this thing, faith in God and just plain old gristle that I've been noted for. I'm determined that I'm not going to give up. At this point, just waiting to see how extensive this stuff is - oncologist said the only way to treat it is with Gemzar but research on the web indicates that many other approaches may be possible - if God's willing, I'm going to try them all until I find what works. I have the love of my wife and family and a few good friends to help me. I will not "go gently into the night."

Gator,
Glad to see you got the right attitude! It's by no way a fair fight. Not to mention the fight against pancreatic cancer is different for each one of us. Sounds like you have done some research. As you may have seen. The odds on survival is not all that great according to the stats. Sounds like you will approach this the same way I did. STATS ARE MADE TO BE BROKEN! I, like you, had my faith,family, and a couple of close friends that helped me get through it all. I might add a good sense of humor helps out greatly! Even if it seems to be dark humor at times! I will keep you and your family in my prayers!

I am a 26 month survivor of stage 3 pancreatic cancer myself. I had both rads and chemo (Gemzar) before my Whipple and chemo after the Whipple. I will say this.. It was one heck of a ride that I would not even wish upon my worst enemy! But the good news is, I got through it! If you would like. Feel free to contact me on the CSN e-mail.

Take Care and GOD BLESS!
Oneshot

Hello Oneshot and others! My husband, 53 yrs, was diagnosed with PC on August 20 of this year and underwent the Whipple on August 31 at UPMC. He is still recovering from surgery--infection set in to incision site and then gastrocutaneous fistula....also came down with CDiff from all the antibiotics! Aghhhh...We are waiting for all to heal to begin 6 months of Gemzar. He was diagnosed with adenocarcinoma. Surgery yielded clean margins, but 4 positive lymph nodes. Since spring he has lost 50 lbs...he is now eating much better, but still has his feeding tube in for supplemental feeding. It is very heartening to see so many that have gone beyond that depressing statistical horizon. We are so scared right now and glad to see that there is hope! God bless you all!

muser22

Hello muser22,

God bless you, your husband, and your family.

My brother was recently diagnosed with CUP, but best guess is bile duct. Our family is also going through the many emotions that, I am sure, everyone experiences. My brother was diagnosed on October 7, and has started his chemo treatment with cisplatin and gemcitibine (tradename Gemzar). He is being treated at UPMC - Hillman. I would be interested to know the name of your husband's oncologist, and your experience at UPMC. Perhaps we can provide each other with useful information and support.

The following is a prayer that I have found to be comforting:

Dear Lord, you bore our sufferings
and carried our sorrows
in order to show us clearly
the value of human weakness and patience.
I now turn to you to ask you to heal
the soul and body of (____).
I know, Lord, that sin tears away
relationships between people and you.
But there is no illness and no wound
that you cannot heal.
Come and touch (____)
where he is most wounded and afflicted.

I believe in your healing power and
I trust and hope that you will hear my request
for my sick brother/sister.

If it is your will, however, that (____)
should carry this cross of illness
then I humbly pray that you give him/her
the strength and perseverance
to bear his/her cross with love.
Grant that he/she and all those
who are now weighed down
with pain and other afflictions
may realize that they are
among the chosen ones
whom you call blessed.
Help them to understand
that they are united with you
in your sufferings
for the salvation of the world.
Amen.

God bless,
Bro2

Hello Bro2--

Always sorry to hear about a new diagnosis! Our UPMC oncology surgeon was Dr. James Moser. He performed my husband's whipple on August 31. Up to this point we have not begun chemo. My husband developed an infection in his incision and then a gastrocutaneous fistula. FINALLY, he seems to be healing well. Chemo can not start until he is healed. OUr oncologist will be Dr. Awan in Johnstown,PA. close to home. He will be on Gemzar~~3wks on one wk off for 6 months. Right now he is feeling well, eating well, and getting some strength and stamina back. Recovering from this surgery has been brutal. The time between diagnosis and surgery was exactly 11 days, so we had very little time to adjust to the devastating news and prepare for this operation we had never heard of before. It has been one heck of a ride, but are hoping the worst is now over. Good luck to you on your journey. Keep the faith!

seen your story and just wanted to say god bless you. im from west virginia but had my whipple done in pittsburgh at UPMC. had my surgery done last year in dec. by dr. zey. to me he is really good. im still on chemo and radiation for another 2 weeks and im done with that. i had many other problems that came along with the cancer. seems one thing clears up and another starts. since the chemo ive had dizziness, low grade fever, blood clot, legs swelling, stomach drained of fluids, but last pet scan showed no signs of the cancer . another appointment at hillman in april. also that was a beautiful prayer. take care and god bless you all. Richard

So glad to read that you are almost done with your treatments and things are going well. My husband is waiting to start Gemzar. He has had a number of complications from his surgery; C-diff, infection, and gastrocutaneous fistula. None have become serious complications, but have resulted in an extended healing time and a delay in Chemo. He is feeling really well at this time. Eating good, getting his strength back---for a while there we were wondering if we had made the right decision going with the Whipple, but, really, what choice do you have? Dr. Zey and Dr. Moser are both wonderful. Thank God for them and their efforts. I hope your appointment in April continues to provide good news! Take care of yourself!

thanks for the reply, im glad hes doing ok. besides some side affects as i mentioned, the gemzar for me wasnt to bad. i started gemzar in feb. 2010 but they had to extend it because of either my white blood count was to low or my platelets to low. i also was wondering if i made the right decision. it took me 4 months to decide. they told me in july of 09 that i had cancer. i was really scared and didnt know what to do. i am glad i got ahold of dr. zeh in pittsburgh, oh ya, i spelled his name wrong last time. by that time my cancer was in stage 3 and i figured as you did, what choice do you have. also if they happen to mention cyber knife radiation, please make sure you get all the information you can on that. ive heard bad news on that but also heard others say its ok. me myself, im doing a 5 and a half week of regular radiation. well again im happy to hear that hes eating good and getting his strength back. take care and god bless

Hi Richard,

I hope you are feeling well, and getting better each day. My brother started his 2nd cycle of chemo at Hillman yesterday. Each cycle is 3 weeks. After the 1st cycle, his pain has been reduced significantly, and he has gained 4 pounds. Hopefully, this is as sign that his tumor is shrinking. He will have a CATscan after this 2nd cycle to see if it is working. His attitude is amazing, and he has been doing all of the right things needed for recovery.

I will pray for you, as I do all those that are going through the emotional and physical effects of cancer.

Take care and God Bless,
Bro2

Hi everyone. I am replying to this post since it was relatively recent. I am trying to find out about long term complications of the whipple. My mom had hers in 2000 and is doing good, considering. She became diabetic but manages to control that. In the last year she has been having problems with her stomach emptying the food out. She has gastroparesis and was on Reglin for a while, but it caused her to have severe tremors, so they stopped that. She is now on Domperidone which is a non-FDA approved drug from Canada. The anastomotic site where they reconnected her jejunum to her stomach was narrowing and she has had 3 procedures to stretch it. She now has edema around the area and so the food still isn't moving like it should and the doctors are scratching their heads. Shwe has a lot of pain and what she describes as "twisting" in the top of her stomach that the doctors have said is a combination of her stomach not pushing the food out like it should and the narrowing not allowing the food to pass like it shouold. I am trying to figure out if there are any 10 year plus survivors out there and if they have any of these or similar complications. I just don't know where else to turn bc this cancer is so bad that there aren't alot of blessed and fortunate survivors like my mom and you all. Any advice, help, words of wisdom would be much appreciated. thanks, Julie

Thank goodness I found this site. I needed hope that all is not lost. I just underwent the whipple on Nov 29. Survived a12 hour surgery and managed to be in the hospital for only 9 days. The pathlogy report came back indicating stage 2 with a tumor greater the 2cm in distance in the head with it invading the ampullar of vadar and the duodenum. 11 lymph nodes were taken out with 7 showing andenocarcinoma in them. They are now planning on chemo and radiation in the new year. They gave me a prognosis of 1 to 2 years, but i will show them all. I am stubborn and wont take this laying down. I have a 3 1/2 year old daughter that needs me. The only thing that is bothering me 4 weeks post surgery is the lack of energy i have.Will it ever get better? The doc said the surgery went beautifully. Still i am scared of whats to come but you all give me hope. If anyone can provide me with encouragment please email me at : leskosky@sasktel.net

My husband had his whipple surgery in August and still does not have the energy he had before. I have read it may take a year or more to return...for some it just never does. He was VERY weak after surgery and had some complications~~infection, c-diff, fistula~~ but is now eating well and feels much better than he did. Take it slow..it all takes time. There is another site you may want to check out..It is the John Hopkins site. There are wonderful people there also who are willing to share their experiences and answer questions. The link is: http://pathology.jhu.edu/n.web?EP=N&FL=PANCREAS_CHAT

Good luck to you!

Muser22,

I'm glad to hear your husband is eating and feeling better! Hope his other complications have cleared up also.

Here's wishing you and your family and everyone else on this site a HAPPY NEW YEAR!

Take Care and GOD BLESS!

Oneshot

Hi saskgirl2

I've had the Whipple's only 1 week after you had it. Stage 2 (R0, M0, N0)...felling good generally but I do get tired throughout the day. Lots of resting and good diet seems to be working fine. The adjuvant therapy will be gemcitabine+pawpaw (6 months)...Will keep a record of the progress on this site. Good luck!

Hi. I had Whipple surgery a little over eight years ago. Life now is mostly good, and as close to normal as it can be after this diagnosis and surgery. Although I am not having the problem your Mom is having, I wanted to post to let you know there are a few of us out here. I became diabetic after surgery also, and have been able to handle it with diet and exercise. I take pancreatic enzymes (Creon) with meals and snacks.

About three years after surgery, I noticed I often would feel uncomfortably full after eating dinner, and that it seemed the food "stuck around" much longer than it should. Dinner is our largest meal of the day, although I eat what is considered a normal, healthy low fat meal. For example, I stick with meat/fish portions for 3-4 oz. max. I found that having a small glass of wine with dinner helped. Somewhere there is an explanation for this, it relaxes something in your stomach and allows food to pass through more easily. Sometimes this is not a good thing especially if a person has trouble with dumping syndrome. I don't, so it actually helps me. I don't have wine every day. I notice the difference in my stomach emptying when I don't. I know some people have other problems with alcohol or avoid it for reasons of faith. I also don't know that it would be helpful for your mom if her problem is related to scar tissue. I am very hesitant to offer anything close to advice because we are all so different. Thought I would share my experience and I hope it is not offensive to you. (I got my doctor's approval before adding wine to my diet.)

I hope your Mom can find something to help.

I was diagnosed in 2003 with tumor in the tail section of my pancreas. Luckily they were able to perform surgery short of an entire Whipple. They got the tail, spleen and lymph nodes and after a few short months I was back to raising my family and chasing more dreams, feeling like the luckiest person in the world.

Fast forward to the past month, now 50, I saw the doctor for what I thought were menopausal symptoms (serious night sweats). He found blood in urine and elevated MCV's, then sends me on what felt like a medical pyramid scheme from one specialist to another. I kept thinking........after all this time, it can't possibly be happening again.

Last Tuesday, I learned that there is a 3cm solid mass in my right kidney. Now I am waiting to determine if the next step will be cryo or total removal of the kidney. In any case.....it's another early catch.

Once again, I will stand and fight. I raised a US Marine. His strength was inherited from his mother.

In May of 2010 I had surgery (whipple) for stage two pancreatic cancer a tumor had been discovered on the neck of my pancreas along with a large mass on my liver.When I went back to see the doctor that performed the surgery to have the staples removed from my abdomine he told me to seek an onocologist and to continue further follow ups with CT scans every three months because he said that there was a 30% chance that the cancer was going to come back.
Since then, I retired from my job under medical disability after working nearly 30 years and moved back to my home state to be close with family.One year has gone by but I live in that stage of fear and depression, I still get symtoms at times like sharp pains inside my abdomine some night sweats and alot of fatique just like those that I would get prior to the discovery of my pancreatic cancer and surgery, I get tired pretty fast and sleepy.
I have tried to go for walks and do a little excersize but that only tires me more and I go to sleep.
My onocologist says that my cancer is in remission and that those symtoms I get are probably due in part of the surgery, I have only had one CT scan in early Febuary so God only knows whats going on.I am also fighting Social Security for disability benefits because it is the only way I can continue to have my insurance cover me since I was a federal employee. I worry alot because I had a freind who was diagnose with a tumor wraped around his kidneys exactly they same time as my tumor was discovered only his cancer was more advanced he also applied for social security disability benefits and recieved his first check 18 days before he died.So I have this death sentence hanging over my head along with judgement pending from social security, all this leads me to is more depression and it makes me paranoid.
It's nice to see that there are actually some survivors, very very few rare survivors of pancreatic cancer for most people with pancreatic cancer dont discover they have it till it's to late and thats why they call it the silent killer.
As oppose to all the other cancers out there where people are getting treatment and cured and in some cases their survival rates are increasing, pancreatic cancer is treated more like the disease of doom and hardly there is not much research funding being provided, the incidence and death rates are on the rise.I feel that people with this dreaded disease should be treated with respect and that the Social Security Administration along with their doctors and their rules should come before a congressional investigation.I really doubt that pancreatic cancer patients rarely ever go to social security for disability claims because most are dead within the first year of their diagnoses.

I was diagnosed with a rare form of pancreatic cancer in September 2011. I had a neuroendocrine tumor, which only occurs in about 5% of pancreatic cancer patients. I had a Whipple procedure in November, done by a top-notch oncologic surgeon. I did have complications, including a twisted bowel that wasn't letting anything through. It caused me to throw up liters of stomach fluids and bile for five days, until I was given a nasogastral tube. My surgeon did a second operation to correct the complications two weeks after the original surgery, which took care of the problem. I was in the hospital for three weeks. Because the tumor was Stage 1 I didn't have to have chemo or radiation, but will be followed by an oncologist. The outlook for this type of tumor if it is found early is very good, so I'm not worried except for that little nagging feeling in the back of my mind, which causes me to be vigilant. I've lost a lot of weight in the six weeks following surgery, and it is not very easy to eat yet. I'm glad to meet a fellow Whipple patient and I will continue to keep in touch.

Barbara,

I hope they have hooked you up with a dietitian. Mine actually gave me a free cookbook. It had numerous ideas on food for people who have had or have pancreatic,stomach or intestinal type of cancers. I found this cookbook and my dietitian to be a great help.

I had lost from 170lbs. down to 110 in a month. I had stage 3 PC. Had the Whipple done in 2008. I was unable to eat and had a feeding tube (J-tube) put in for sometime before surgery. I know how maddening it can be. Wanting to eat and not being able to! Now days I can eat most anything I like.

These are some of the things I tried and had luck with before surgery in order to keep some sort of intake by mouth. Muscle Milk, Boost ( There is another brand. I just cant recall right at this moment,but, it didn't work for me.) and watered down Liquid Jell-o.
After the Whipple I was told to eat as much guacamole as possible. It adds weight pretty fast. Everything was in small portions as often as I felt like and could tolerate. I had chemo after the Whipple so eating and keeping it down was an ordeal for some time. Once I finished chemo though...I started eating most anything that didn't try to eat me first! I am one of the fortunate ones who only have to take a few enzymes with each meal. Some folks have to take several. Whatever you do just don't eat to much at one time when you do get your appetite back. It can, in my case, hurt like just waking up after the Whipple. I hope you are luckier! But trial and error will sort out what you can and cannot eat also how much. Each person I have met who has had PC seems to go through this process.

GOD'S SPEED in your recovery,

Oneshot

Hi Spookman-

After many scans and blood work, I was diagnosed with metastatic carcinoids in the tail of my pancreas, 3 in my liver, and several large lymph nodes. The surgery will take place at UV of Madison Wisconsin hospital. My surgeon stated that she will remove the tail of my pancreas, my spleen and surrounding invaded lymph nodes. The surgeon will then resection part of my liver where one of the 3 carinoids where found, the remaining carcinoids are located in the middle of my liver where she will either determine to burn or freeze them. I am currently giving myself 3 injections a day of octreocide. Please keep us posted on her progress, and my thoughts and prayers to all who are afflicted with this rare disease.

I am a very positive person and I will fight this with smiley faces painted on the nails of my big toes. With your mum's positive attitude and a son like you to help her, she will make it another 20 years. I will keep you posted on my progress.

I will never give up ...

Nancy

Thanks Nancy,

My mum has now had four weekly sessions of chemo. So far so good I guess. She has another four before they give her a break - I'm not sure how long the break will be. The chemo really knocked her around the first couple of weeks and it still does but she's coping with it better. Last week she said she felt the best (most energy, greatest appetite) she had since diagnosis so that's got to be good. She has put back on a bit of the weight she'd lost and we're continuing to try to fatten her up.

I have looked up all I can re: alternative therapies and supplements, which caused 'consternation' when Dad presented the trial leader with a list! They don't want you to take anything that boosts the immune system while on chemo but I will be loading her up on them as soon as we get the ok.

All the best with your treatment.

Spookman.

hi

my dad was diagnosed with pancreatic cancer 2 months back...on july 11 th to be precise...it is stage 4...the tumour is in the body and tail of the pancreas (7*5cm)....so he never showed jaundiced..the only symptom was slight pain and discomfort in the abdomen...at the time of prognosis the cancer had metastatised to the liver..there were multiple target lesions on the liver...we were told that nothing could be done...the doctor gave us max six months..

we nevertheless started with the treatment...he was being given gemcitabine and cisplatin...my dad was in good health at the tym of the diagnosis..

we sought for other alternative treatments..we found an ayurvedic medicine centre in ahmedabad...we started with both the treatments simultaneously..

after 3 cycles of chemotherapy the doc asked my dad to undergo a scan...the scan revealed that the lesions from my dad's liver are almost gone and the tumour in the pancreas has shrunk to(5*2.5cm)...thats more than 50%...the doctors were very surprised...my dad continues to be in good health owing to following a good diet and all those herbal medicines...his haemoglobin has never gone below 11....we are hopeful that he will make a full recovery...

indiagirl

U are so very lucky. I just lost my dad who was my best friend to this one month ago yesterday. Please treasure what u have been given as a second chance. u are so very blessed, i would give my life to have dad back again. xx

U are so very lucky. I just lost my dad who was my best friend to this one month ago yesterday. Please treasure what u have been given as a second chance. u are so very blessed, i would give my life to have dad back again. xx

There is hope. I was diagnosed with a Pancreatic adenocarcinoma in Jan 2007 (yes, 5 years in another month). My tumor is located in the head of the pancreas and is inoperative as it surrounds the superior mesenteric artery. Hense, Whipple surgery was not an option. I also live in Australia and aged 63. I continue to have chemo but the good news is I enjoy very good health. As I do not know any detail of your mother's circumstances, I am reluctant to offer any advice at this stage however I am willing to share my experiences with you should you be interested. I don't need to remind you of the dire prognosis of this disease but there are some success stories even among those that cannot have surgery. In the initial stages of treatment I suggest you resist the temptation of alternative medicines or herbal "boosts" to the immune system - you should first see how the body naturally reacts to the Gemcitabine without artificial interference.

Regards,

Peter

Awesome, Peter! So happy to read you are surviving. My husband, diagnosed 6/11 with non-resectable because tumor wrapped around artery, going for 10th round of Fulfirinox treatment tomorrow. Overall, pretty good health except being VERY tired. Did you do radiation? And what type of chemo did you get?

Hi cbirger. My treatment started with 6 chemo (Gemcitabine as single agent) sessions over 2 month period (Mar - Apr '07). This was followed with 25 radiotherapy sessions concurrent with continuous Fluorouracil infusion over 5 weeks (May - June '07). Since then I have had 4 further chemo (Gemcitabine) treatments of either 4 or 5 cycles. My quality of life is very good. I understand that Fulfirinox is usually only used as a first-line option for patients with metastatic pancreatic cancer. If this is the case, Fulfirinox has a proven survival advantage over Gemcitabine but has greater toxicity.

Hi Peter
Thanks for sharing all this information. My dad has just been diagnosed and you give me some hope.

Pancreatic Cancer Survivors - Sure would be nice if they had us separated into a Pancreatic Group so that we could focus on our issues.

I was diagnosed in Nov. 2011 with Stage 4 and would like to hear from any of you out there in the same boat.

Lizzy

I will be 46 and 120 months in May (56). I was diagnosed in January 2009, had radiation and chemo to shrink the tumor and exploratory surgery to see if I was a candidate for the whipple, which I was not. 6 months chemo followed with a rest for 4 months until a cat scan in early 2010 revealed more than 8 spots on the liver. 6 months of chemo followed by another cat scan revealed my liver to be clean. I was feeling fine until April 2011 when I again had pains in the side. A subsequent cat scan revealed a shadow on the liver which was treated with Radio frequency obletion and another 6 months chemo. I have recently had a biopsy (2012) on a spot on the liver followed by a pet scan which i am pleased to report came back clear.

My mother had lung cancer, my dad bladder cancer and my two sisters breast cancer. One sister has just been being diagnosed with breast cancer in the bone. While I have lost my mum and dad, my sisters and I remain strong and positive throughout and that really is the message I would like to pass on to members of this exclusive club. Stay positive - keep strong - Do not isolate yourself. Make the cancer a small part of life not have your life revolve around cancer.Try to lead a normal life with the routine as it was before your diagnosis. It is an emotional rollercoaster so have your down days but make sure you enjoy your good days and reward yourself with something special every few months for being strong, standing up straight despite the weight on your shoulders and getting on with life.

I would add, I know I am living with a potential time bomb but at the moment am thoroughly enjoying life despite on occassions looking like the last turkey in the shop when i lose my hair. Ron Rhode Island