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One of my best friends has pancreatic cancer. God help her. Her friends will be there to help her in any way we can. God bless you Joanie Gribbin from I.S. 204 Long Island N.Y. The best math teacher and friend.
— Ivy Glazer

54 9-27-08 My husband was diagnosed four weeks ago. He had the whipple surgery and is now recovering. He will beging chemotherapy in four weeks (he needs to heal first). He’s diagnosed with a Stage 2B; which means that it was completed resected and had clear surgical areas; however out of 9 lymph nodes one tested positive for cancer. No other visible problems. It is such a scary time for us…and for our two kids; Isabel (6) and Anthony (2). I think “me… I’ll be ok; I am a grown woman; but my two children…just breaks my heart.” We are praying that HE WILL SURVIVE… We have the odds on our side; since they say the surgery is the best chance for a cure. I am so scared and pray to God to give me the strength to hang tight and to give my husband the drive to CONQUER IT!!! I pray at night for each of every one of you; who have been victims of such a horrible disease; so that you find peace within your heart to live life and go on. Please, I ask for you to pray for Jeff’s full recovery.
Thanks — B— Alves

55 November 3, 2008 will be my 8th year as a pancreatic cancer survivor, and I know that I am truly blessed to be alive. When the doctors told me the numbers of 2% chance of making it 3 years and a 4% chance of making it 5 years I just told them to count me in on those numbers. I was stage III…they took out 40% of my pancreas, my entire spleen, a slice of my left kidney, and 5 lymph nodes. The cancer spread only to the first lymph node so I was pretty fortunate. I had chemo 24/7 non-stop for 5 weeks and radiation 5 days a week at the same time. Then they told me that they wanted to do another round of chemo but just once a week for 3 months. I told them no that I had had enough. They told me to go home and rest and that they will call me in 2-3 weeks. When they called me I was ready to do another round. I mean what is the alternative. About 18 months into my battle with this horrible disease I began to ask why me? Not why me did I get cancer, but why me am I the one to survive. Why did I survive? There had to be a reason…and I found it in Gilda’s Club. I am a member and a volunteer. Being a survivor means that you have another day to live, but you must live it with a purpose. Because if you don’t, you have wasted a second chance at life. Don’t waste it!!!! Get out and live each day with a purpose Russ Carlson

I lost my mother this past Father’s Day, literally 3 days after diagnosis. My heart goes out to all of you who lost their loved ones, especially those who were young.
My mother was 78, but still active in her church and community. She woke up the Thursday before her death and told my dad to take her to the emergency room because she felt so bad. (looking back, my sisters and dad saw signs that they had not paid attention to at the time, that Mom was not feeling well) She became unconscious shortly after she was given the bad news, and died two days later. A mercifully short and pain-free end for her, for which we are grateful.

Mom did smoke from her teens onward, and wasn’t a fan of vegetables, so I guess that put her at higher risk. I’m a non smoking vegetable eater, but does that mean I’m NOT at risk? Veh

I am another orphaned by pancreatic cancer. My mom was diagnosed March 2007 and passed away March 26,2008. She was 76 but there was no difference in her and a 30 year old. She was full of life, extra healthy and had more energy than i do at 38. She was loving life to it’s fullest. Enjoying her family and grandchildren, traveling, on top of the world. Then after 2 weekends of being sick with abdominal pains and being sent home from the ER both times believing it was only some kind of infection, an MRI was finally giving and a golf ball sized tumor was detected in her pancreas.
Like many, we had never even heard of PC. The information I found on the internet was like a bullet hitting my stomach. I now knew what PC was and what it could and would do.
My Mom was not familiar with cancer and I never allowed my Mom to know how serious PC was. I didn’t want her to be scared or negative in her treatment. Sometimes I wonder if that is the reason she lived a full year after diagnosis. She was always positive and even up to the last 4 days of her life, thought she was going to go back home and thought she would get better. It wasn’t until the last 2 days that she was given strong doses of morphine, because her organs were shutting down, and moved to a hospice facility that it was obvious she wasn’t ever coming back.

People have asked me if I feel that maybe I should have let her know how serious the cancer was and what the survival rates looked like. My answer is that my Mom was full of life and I never wanted to take that life away from her. I wanted her to have it until her very last breath, and she did.

Now, today, for me, the saddest part (other than the obvious) is that there is not progress in the research being done to prevent this from happening to anyone else.

My prayers go out to everyone who has had PC come into their lives.

Please support Pancreatic Cancer research

My aunt, 54, was just diagnosed with (rapid growth) progressive pancreatic cancer that has spread to her liver. She has been in pain for about a year and has just now been diagnosed. We live in Colorado — if anyone reading this has suggestions for doctors or care in the area, please post something. She was diagnosed after a series of tests including a blood test and ultrasound. She’s had stomach pain radiating into her back for about a year… they did a upper GI and treated her for ulcers. She has been told to rest, not walk and take it very easy. Her meeting with the oncologist is on Friday. We’ll know more then.
Thank you

63 I have read all of your stories and my heart is with all of you. I, too, have a story. In March of 1999 my Mother, zl, was diagnosed with pancreatic cancer. In June of 1999 her sister was diagnosed with pancreatic cancer. Her sister died 6 weeks after diagnosis. My Mother died 9 months after diagnosis. Their mother died of pancreatic cancer in 1996. Their cousin died of pancreatic cancer in 2006. My Uncle died of pancreatic cancer in 2007. I am participating in various familial studies. I urge all of you who have a family history of pancreatic cancer in your families to get involved in the research side of this disease. Tissue is needed for the researchers as are blood samples. I also encourage you all to support the Pancreatic Cancer Action Network (PANCAN) http://www.pancan.org. This organization funds research directly, advocates for more funding from our national government and provides support services for patients, caregivers and medical professionals. You are all in my prayers Stephanie R. Davis

64 I was diagnosed with inoperable pancreatic cancer the day after christmas 2005. My symtons were, stomach pain, abnormal bowel movements and being a heavy drinker I could not consume more than a few drinks without feeling very drunk. Having colion polops in the past I went to a family physcian who first told me I had possibly something such as a sunflower seed stuck in my colon and to watch my diet.
Well the problems persisted and got worse. I was loosing weight, turning yellow and decided to see a different Doctor. They ran some tests and said I either had HIv, Mononucleosis or Hepatitis and to stop drinking immediately and ordered a ct scan.
There it was a tumor on my pancreas had blocked the byal duct that would as far as I understand drain byal from my stomach. Thank Dr. Donnely for being so curious. I was pretty numb. Of course I looked up the disease on the internet and saw the stats and was told in February of 2006 I had 6-18 months to live. Bull-sh–t…Here I am 33 months later and typing this comment. I am not a religious man and don’t care or believe in miracles or fairy tales. It is what it is and that’s all….folks James Thomas

August 2006, at age 52, I was diagnosed with non-resectable pancreatic cancer. I am gratefully indebted to Dr. Vincent Picozzi and the incredible team at Virginia Mason Medical Center in Seattle. Dr. Picozzi specializes in the treatment of this disease, following ~ 300 patients.
Because of the treatment protocols at VM, today I am feeling 100% well, and there is no evidence of the tumor in my pancreas, which was originally 2.5mm x 5mm.

You are welcome to read the story of my journey on my blog at http://www.snigletsmom.blogspot.com. The treatment protocols are described, as well as side effects, and anecdotes about my life, including photos during treatment. View at your own risk! :-) (I have been negligent in posting lately, but am doing great.)

It’s important for all of us to support the Pancreatic Cancer Action Network, which is based in El Segundo, California. If your area doesn’t have an Affiliate Chapter, you can make a difference by starting one. After I was diagnosed, my dear friend, Ann Mix, had the idea of putting on a black-tie Gala, to raise funds and celebrate life. We call it “A Celebration of Hope”. We’ll be having our third annual Gala on May 2nd, 2009 at the Seattle Sheraton Hotel. With our 2009 revenues we will top $0.5 million in NET proceeds to PanCAN. Evidence that one person’s idea can make a huge impact. Thanks to my other friend, Marie Gunn, for chairing in ‘08 and again in ‘09.

My little alien chose to pack his bag, and move up into a lymph node, above my clavicle, at this time last year. Again, Dr. Picozzi and Dr. Guobin Song (radiation oncologist at VM) treated it successfully. This was done with a combo of radiation and the 5FU pump for a six week period. Since then my scans have been clear. I imagine the little monster will show up again, but I look at it as my job to fight, and knock him into outer space.
I visited three oncologists, at various Seattle medical centers. In my experience, the MOST important thing for a pancreatic cancer patient is to choose an oncologist who 1) believes in positive outcomes, and 2) has a proven track record of success with pancreatic cancer, and 3) treats you as a person, not a statistic. You don’t want to be going to XYZ oncologist, who has limited experience with this disease. Your oncologist, surgeon (if applicable) and radiation oncologist need to work as a true team. Virginia Mason lives up to its motto of “Team Medicine”. I could not be more pleased with my two years of history with Dr. Picozzi and the rest of the team. (They are not paying me to say this!).
I wish all my fellow patients the best. You must believe, and keep the faith. Don’t let the cancer rule your life. Get out there and make the most of each day.

Maija Eerkes in Bellevue, Washington

68 I knew very little about pancreatic cancer until January, 2007 when I learned that my college roommate, Dianna, had been diagnosed with PC. The 11 months that followed was a series of ups and downs for Dianna and her family. Her treatment included the Whipple surgery, chemotherapy, interviews for clinical trials, lots of prayer, and support from her community. All the while Dianna believed that she would be healed of this devastating and painful disease. I have recently learned that Dianna’s sister, Debbie was diagnosed with PC in July, and passed away a few weeks ago.
Throughout the year of Dianna’s struggle her hometown of Madison, Indiana had several fund raisers for PC, including the sale of purple bracelets that represented PC, and brought awareness to the disease. At her funeral last December the bracelets were placed on a Christmas tree at the funeral home, in her memory.
Raising awareness on the need for PC research funding is so important so that prevention, early detection, and treatment can be effectively addressed JoAnn Hairston-Jones

72 November is pancreatic cancer awareness month! Learn how you can help by visiting http://pancan.org/raiseyourvoice/ on how you can support the cause by contacting elected officials for specific pancreatic cancer funding. Did you know pancreatic cancer research is where breast cancer research was in the 1930’s? Yet pancreatic cancer only receives 2% of the National Cancer Institute budget. We need help to change these statistics and pancreatic cancer’s 95% mortality rate. Thank you for your support

My mother passed away six months after her diagnosis. Our story is depressingly similar to the ones I have read here- the initial misdiagnosis, confusion, bureaucratic delays… A year and a half later I have come to terms with her death, but not the suffering she endured or the uncaring attitude and appalling lack of communication skills displayed by the various physicians (there’s no way you could call them a “team”) at the Lombardi cancer center at Georgetown University. I should add that the home nurses - not associated with Lombardi- were wonderful.
A positive mental attitude helps, of course, but my mother was the strongest person I have ever known and she could not beat it. This came as a surprise to us all. Still surprises me every day. I miss her very much - Aida

I can so understand the gamut of feelings expressed here by so many. Even though I’ve been an LVN for years, when my brother, age 57, began having GI issues, vague problems, I didn’t have a clue. He saw the doctor less than 3 months before he jaundiced, went to the ER, & upon tests, the good doctor in Rockford, IL told him in Sept. 2000, he believed he had pancreatic cancer, not to go to just anyone… since he was from TX, to get to MD Anderson. When I got on the internet to find out what I could, as I read about it, without realizing it, I pushed away from the computer. But of course, it’s human nature to have hope. I contacted MDA, was able to get my brother there a week later. Prior to his appointment, he read in an ACS pamphlet the same number of people diagnosed in a year was the same as the number who died in a year. He said this looked pretty serious.
At MDA, they confirmed the diagnosis, & laid out a treatment plan, which at that time was to have chemo & radiation prior to surgery, hoping to shrink the tumor for easier, complete removal. Of course, the doctor told us, they would scope him first, to be sure he was a candidate for the Whipple; he was, having the surgery in Jan. ‘01. He recovered, & went back to work before May.
Meanwhile, during his recovery from surgery, we received word our oldest brother’s daughter, our 43 yr old niece, was diagnosed with pancreatic cancer precisely as my brother. It was so unbelievable, only 6 months apart. She followed the same protocol, with the same doctor treating her. I’m the youngest of 8 siblings, & we learned of the Johns Hopkins National Familial Pancreatic Tumor Registry study, so all of us participated in filling out the forms, with my brother sending blood specimens

By mid-summer of ’01, my brother began having pain in his back, & when he went back in August, we learned there was metastasis. He began different treatments, none of which were effective. By late fall, the oncologist told us there was no other treatment for him. He came to stay in our home. Before long, we learned our niece had metastasis also, & began various treatments, none of which were being effective. I heard about the Pancreatic Cancer Action Network from women standing outside the Today Show talking to Al, & called immediately! It was so good to know someone was doing something about this terrible disease. My brother told me, although I couldn’t change anything for him or our niece, to please do all I could to change the future for others. My sister & I, with our husband’s support, cared for him, obtaining hospice in Dec., to help make things easier. He died with my sister & I at his side at 3AM, Jan. 9, ’02, just shy of his 60th birthday.
I became involved with the Pancreatic Cancer Action Network, & with their support, began planning our first benefit for Nov. 16, ’02 in Fort Worth, with my sister & some friend’s help. Modest start, but a start. Two weeks later, the day before Thanksgiving, our niece died at age 45. Sadly, her dad died of heart problems 3 days before her.
Fast forward… through the past 6 years, I’ve met folks all across the country, as well as many local folks who have dealt or were faced with pc. I’ve heard so many stories, unfortunately too similar. Yet as our affiliate has grown, we now have a 13 year survivor who volunteers as our Education & Outreach coordinator. Trying to reach the media has been difficult; I still don’t understand why they don’t cover pc more, even with the loss of Pavarotti, Dr. Pausch, Dr. Ron Davis, former AMA president just Nov. 7th, not to mention Patrick Swayze’s diagnosis. But I will continue to spread the word, wherever I have the opportunity, wearing my ribbon, & oh yes, driving my car, which is totally wrapped in purple & white, with the organization’s website & phone number, & awareness ribbons all around it! I will also continue going to Wash, DC each year for Pancreatic Cancer Lobby Day, to lobby for increased funding for pc, the 4th leading cancer killer in the US, as we must find an early diagnostic test & more effective treatment!
I urge all who are faced with this disease to contact them at http://www.pancan.org or 877-272-6226, ask to speak to a PALS (Patient & Liaison Services) associate to obtain more information on pc. And joining the efforts of the Pancreatic Cancer Action Network is very helpful in healing the pain of losing loved ones, knowing we are changing the future for others by increasing awareness, supporting the patients, & advancing research. NO ONE should feel ALONE with this disease! I apologize for this being so long, but I feel it’s important for us to be able to share our experiences, so others will know they are not alone. - Virginia Griffin 11-10-08

77 I already posted #44. I wanted to ask the researchers to look into BUTYL or 2-butoxyethanol as a cause, per research it does cause endocrine tumors and a whole lot more tumor cancers and autoimmune issues.

http://www.valdezlink.com/re/butylcauses.htm

It is more probable that we have multiple generations of chemically poisoned ... more than it being a genetic issue (However, this chemical is a teratogen chemical and it does cause damage to the genes and birth defects)

You will find that it is the hard workers who are most at risk, but if you travel a lot, you can be exposed second hand and have no clue that you were sitting next to a professional painter or cleaning person. This chemical is too strong in many household cleaning products.

Research says it causes hemolytic anemia. And it would be autoimmune Hemolytic Anemia. Suspect it for the cause of Chronic Fatigue Immune Dysfunction Syndrome, CFS, FM, ME ... for the primary cause of harm to the Vietnam Vets ... for the syndrome of gulf war vets ... for much harm to WWII vets

I suspect the cancers that showed up in Barack Obama Jr's family on his mother's side would be exposure to this chemical. I think Congress should ban it. Exposure looks like the flu (What is blamed on a virus is this particular chemical exposure.)

http://www.valdezlink.com/re/anndunhamobama.htm

Doctors who see too many patients with exposure to this chemical are themselves at risk for 'second hand exposure' and one of its cancers.

I write web pages to share what I'm learning, and there are many inaccurate views in medical science because they don't understand this chemical. Diabetes is one of its side effects (Not always but many times - later too low blood sugar, too low Blood Pressure, too low body temp)

My son at 18 was harmed by 2-butoxyethanol when he worked as a bioremediation worker of the Exxon Valdez Oil spill. Compare these workers to the 'gulf war syndrome' vets and you will see that they look alike

http://www.valdezlink.com/pages/crackthecase.htm#these

http://www.valdezlink.com/re/thecfidsview.htm

FIND THE ANEMIA

Take note of what exactly is going on differently when flatulence, diarrhea, sniffles, to full fledged flu symptoms start up.

http://well.blogs.nytimes.com/2008/09/18/voices-of-pancreatic-cancer/?apage=4#comments

Another voice from a caregiver –Sadly, this disease is misunderstood, misdiagnosed, little researched and it has no successful treatment. My husband, age 55, died in 2006, 6 months after diagnosis. At first, his gastroenterologist told him he had acid reflux. He insisted that they keep testing him for something else due to his sharp pain in his lower back.. The tumor did not show up on a multiple ct scans until it was 2 cm and had metastasized to his liver. Once this cancer spread, he had no chance for surgery. We experienced insensitive physicians and nurses during his multiple chemo treatments. It’s a horrible debilitating disease with symptoms that differ from patient to patient. Our goal was to have a good quality of life to the end. (pain meds, PT, anti depressants, etc) Better markers, earlier detection (petscan), and specialized services that deal with the emotional and physical toll on the patient are badly needed. Basically, MORE MONEY IS NEEDED FOR PANCREATIC CANCER DETECTION, TREATMENTS AND RESEARCH.
— Gin