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Pancreatic Cancer Survivors

jimnsherry's picture
jimnsherry
Posts: 23
Joined: Jun 2005

Hello, I am wondering if there is a place to find out the longest surviving Pancreatic Cancer survivor. I am doing great myself since 1/2005 Whipple. I thank God for my blessing. I am looking forward to getting through five years, only 3 1/2 years to go, so I was wondering if anyone has contact or knows any Pancreatic Cancer survivors of 5 years or more, it would be nice. THANKS

dvodola
Posts: 1
Joined: Apr 2009

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!

B Selvakumar
Posts: 4
Joined: Jan 2009

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

hopeful53
Posts: 2
Joined: Apr 2011

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?

janinekay
Posts: 1
Joined: Oct 2011

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

LindaColon
Posts: 3
Joined: Apr 2009

Hi, while in DC this past week I discovered that a man I had read about at the beginning of my journey is still alive and doing well; 41yrs later! Hello! I'm also about 18mths out myself and look forward to another 40 or so years! If you've yet to do so check out pancan.org; lots of neat stuff.
Linda in VA

B Selvakumar
Posts: 4
Joined: Jan 2009

Really happy to note that you have survived 9 years after surgery. I would like to know more about your treatment, medication and dietary habits as I have also undergone a whipple's procedure in December 2007

B Selva Kumar

Fortunate1
Posts: 1
Joined: May 2009

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!

ElyseR
Posts: 1
Joined: Oct 2009

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.

jb2012
Posts: 1
Joined: Jun 2012

Hello, my dad is about to undergo the same surgery. Wipple and removal of the mass that is surrounding the SMA and touching the SMV. We are scared to death and very worried about the risks and recovery. Glad to see you were doing pretty well 8 months after. How are you doing now?

robinson34821
Posts: 1
Joined: May 2009

In Sept 2008 I had a modified whipple @ the Hershey Medical Center to remove the head & neck of the pancreas. A cyst with a extremely high marker, after the fluid was tested, was discovered during a workup for my blood preassure. There was no cancer but it would develop in the near furture. I really no choice but to have the surgery. Multiple complications followed the surgery. Followup CT scans indicate no cancer. My prayers to all that have had their lives changed to pancreatic cancer.

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

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's picture
PURPLECANCER
Posts: 11
Joined: May 2009

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.

Bartrip_Devon
Posts: 10
Joined: Oct 2009

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?

JamesP
Posts: 6
Joined: Oct 2009

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.

Bartrip_Devon
Posts: 10
Joined: Oct 2009

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.

JamesP
Posts: 6
Joined: Oct 2009

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
Posts: 10
Joined: Oct 2009

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.

Bartrip_Devon
Posts: 10
Joined: Oct 2009

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.

mauricioherrera
Posts: 3
Joined: Nov 2009

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.

mauricioherrera
Posts: 3
Joined: Nov 2009

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...

alternativeonco...
Posts: 3
Joined: Dec 2009

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

thanks

hcuppett
Posts: 1
Joined: Nov 2010

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

Oneshot
Posts: 60
Joined: Jul 2009

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

mmacmonagle
Posts: 5
Joined: Dec 2009

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

posey's picture
posey
Posts: 1
Joined: Mar 2013

look up cancer care of america,and pancan they have some survivors there,peggy is one i read alot because her doctor only gave her 3 months and she is 10 plus yrs surivor.

lwg76
Posts: 1
Joined: Sep 2009

thought you would like to know that my father had the whipple in july 1991, and at 88, is still going strong.

B Selvakumar
Posts: 4
Joined: Jan 2009

Really happy to know that your father has survived 18 years post whipple. I would like to know mor about his treatment as this will act as a morale booster to me wha has survived 21 months after whipple without much complications.

B.Selva Kumar

creeves
Posts: 1
Joined: Oct 2009

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

mauricioherrera
Posts: 3
Joined: Nov 2009

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.

jimnsherry's picture
jimnsherry
Posts: 23
Joined: Jun 2005

I thought I would write and be informative. My dear sweet husband passed away on 5/14/09. He was diagnosed in 12/04 and had a whipple on 1/21/05. He decided agaisnt chemo until November 2008 when he entered a clinical trial. He did great and had hardly any problems until after November 2008. On April 29, 2009 we drove 100 miles to see Jesus Christ Superstar live on stage at Ball State University, it was great. My husband was 61 when he passed. We had the happiest 4 years of both of our lives, and tons of pictures. Live as hard as you can. Jim didn't even act like he knew he had cancer, and those last two weeks before he died were mostly the only time he seemed sick. He was only on Hospice 4 days. God rests' his soul now.

hmpcwks
Posts: 1
Joined: Nov 2009

My dad is a 21 year Pancreatic survivor. His doctor operated on him for 18 and a half hours, and was able to remove it all. He is now diabetic, and needs insulin, but that is a small price to pay. He was told he would only have a year and a half if the operation was sucessful, so we are very lucky and we are thankful for every day. His doctor always told him that he wasn’t supposed to still be around, but my dad fooled them all. My family now truly believes that it just wasn’t his time, and we will always be grateful for Dr. Fry, and the work he did for my dad. For those of you who have heard those words that there is no hope, please don’t believe them, for there is always hope.

Joe Padilla

ldenton
Posts: 1
Joined: Nov 2009

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

vricord
Posts: 2
Joined: Jun 2011

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

Jill W
Posts: 1
Joined: Dec 2009

I was diagnosed with Pancreatic Cancer on August 22, 2008 at the age of 33 years old. Up to this point, I had been a healthy, active, young mother with a great career. My symptoms were back pain, stomach pain and frequent bathroom trips, extreme fatigue, and the final symptom was the jaundice. I hadn't seen a regular doctor in nearly 10 years as my yearly OB visit and Dr would handle any concerns or prescriptions I needed. There was no history of cancer in my family. I had a stent put in the following Monday. The juadice remained, as did the extreme itching. 2 weeks later after the whites of my eyes had turned green, I returned to have another stent put in, this time draining the bile from inside of me. The tumor at the head of my pancreas was the size of a golf ball. The whipple wasn't an option due to the size of the tumor and due to it's location, wrapped around the main arteries. So I began 6 weeks of radiation, 5 days a week, and 1 day a week of Gemzar. The Gemzar made me hyper, the radiation made me extremely sick to my stomach. By Novemver, when this set of treatment was completed, the tumor had shrunk very little and was still unoperable. I then began a cycle of 3 weeks of receiving gemzar 1x/week, and then I would have the 4th week off to recover the cells. After 4 of these cycles, another Cat scan. This time, the tumor had shrunk in 1/2. Again, the same process for anouther 4 rounds. This CAT scan showed the tumor was undetectable. My cancer cell count, which had began at nearly 3,400 cells was down to a mere 11. I saw the surgeon again, who stated he wasn't comfortable doing the whipple, b/c as he said, the recovery is terrible, I could be in the hospital for a number of weeks, and that my quality of life following the surgery may not be what it was now. I was having no problems, I looked healthy, had returned to work full time. So we decided on 1 more round, which brought me into September. A full year of chemo. Again, this CAT scan showed the tumor as undetectable. I ended up with a gallstone attack in late September, which caused the blockage of a stent, thus causing a virus. I was hospitalized for 11 days, but again, the CAT scan showed no tumor. I am scheduled for a 3 month check up on 1/8 with the CAT scan scheduled for 12/29. I haven't been feeling the best; low energy, constant bathroom visits, and horrible mid-back pain, but I'm praying the evil tumor has not returned. I'm going on 17 months now and just celebrated my 35th birthday. Hang in there everyone. The biggest adjustment for me was learning to rest, as I was always on the go, always working on something in the yard, etc, etc. Positive attitudes make all the difference in the world. I've said from the moment I was diagnosed that I didn't have time for cancer... :)

pinoangel96
Posts: 3
Joined: Jan 2010

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

davier23
Posts: 1
Joined: Dec 2009

I am reading through all of these posts and am inspired by the faith and optimism that I am reading. I was diagnosed with pancreatic cancer at the age of 32 on October 31, 2005, due to a high fever of 105, that made my body shiver, even though I was so hot. While checking my kidneys, the doctors found the cancer on the head of my pancreas. Almost two weeks later on November 14, 2005, I had a 7 1/2 hour Whipple procedure. I stayed in ICU for 3 days and in the hospital for 2 weeks. I was determined to be released as soon as possible. I know for sure that my positive mind, my faith and optimism is what helped me to recover. Now, four years later, I am still here and looking forward to my 5 year mark! I pray to God everyday for the blessing that I have of life and I encourage everyone around me to appreciate life everyday. Blessings to you all!

jakesman
Posts: 33
Joined: Sep 2009

Those who are currently diagnosed w/ PanCan should read this article:

http://www.savvynaturalhealer.com/2008/03/alternative-pancreatic-cancer.html

Bartrip_Devon
Posts: 10
Joined: Oct 2009

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)

jakesman
Posts: 33
Joined: Sep 2009

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 :)

Nunu123
Posts: 11
Joined: Jan 2010

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.

CaryRenault
Posts: 11
Joined: Jan 2010

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

glacierman
Posts: 1
Joined: Oct 2010

Hi, I stumbled on this while doing some research. My father was found to have advanced pancreatic cancer in 1995. He had half his pancreas, his gall bladder, most of his stomach, intestines and duodenum removed and it had spread to his lymph nodes. He was put on radiation and chemotherapy and told he had at the very most 2 years to live. As I said, that was in '95 and this year he went bow hunting for elk (at 80 years!) in the High Cascades of Oregon, as he has for the last 12 years. None of the doctors have a clue as to how he has survived with virtually no trace of the cancer remaining.
It is extremely rare but dad is proof that one can, in his words, "Beat that d___n cancer!". Here is a link from a newspaper article about him from 7 or 8 years ago
http://www.thefreelibrary.com/Man+carves+reputation+along+with+oars.%28Business%29%28A+Creswell...-a0115779341

TheGator
Posts: 2
Joined: Nov 2010

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."

Oneshot
Posts: 60
Joined: Jul 2009

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

muser22
Posts: 4
Joined: Nov 2010

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

Bro2
Posts: 3
Joined: Nov 2010

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

muser22
Posts: 4
Joined: Nov 2010

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!

richardo
Posts: 4
Joined: Feb 2010

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

muser22
Posts: 4
Joined: Nov 2010

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!

richardo
Posts: 4
Joined: Feb 2010

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

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