well blogs nytimes.com

1. Oh this one hit home. My mother was diagnosed with pancreatic cancer after several months of suffering with abdominal pain. Unfortunately, by the time she was diagnosed the cancer had metastasized to the omentum and liver and she passed within 3 months. This disease devastated my family and we desperately need to find a means of early detection. I’ve recently read that stem cells may have alot to do with several cancers, including pancreatic. I pray we find a cure for cancer sooner rather than later and that we come to realize stem cell therapy may be the answer. Blessings on all these people and I wish them the best and pray for their survival.

   — Marguerite, NYC

It is a tragedy that pancreatic cancer is such a devastating disease. However, we need to all band together and make Cancer a National Priority. We need to demand more money for research and collaborative research.

Perhaps I should apologize for politicizing this issue, but I think we need a bit of politicization to correct our insanely skewed national priorities. 34,000 will learn they have pancreatic cancer, and our funding allocation for these devastating diseases is shameful compared to our current budgeting.

I lost my mom to pancreatic cancer in April. She fought the disease for over four years. She was always a fighter–a beautiful, brilliant ,and strong woman. Pancreatic cancer was not kind to her, or to the family. Nobody should have to live or die that way.

My best friend was recently diagnosed with the disease. One would think that early detection would be critical, but his, like so many others, was misdiagnosed from the start…the early symptoms are common to many other more common diseases.

Such a tough Cancer….
http://www.143mimi.com

1. My heart goes out to all of you that have lost loved ones to this terrible form of cancer & in fact to any type of cancer & those of you who are fighting cancer now. I agree that we need to have someone in the white house who will give more funding towards cancer research and help us to go forward, not backward, in finding a cure for this horrific disease.

   — Marguerite, NYC

1. This is a terrible, heart breaking disease. The pancreas is buried deep, and often does not present with symptoms until it is too late for cure. One should maintain a good attitude, but understand those who succumb to this and other overwhelming illnesses are not “weak” or that they did not fight hard enough. Sometimes these conditions are like a train comming at you on a train track. All the stregnth and will in the world cannot stop it. In healthcare often the goal is to put the patient in the best position to heal, then if you believe in God it is in his or her hands.

   — J. Ellis, MD

1. I lost my mother to pancreatic cancer 8 years ago…. she died within 6 weeks of diagnosis. However, she had been complaining to her doctor about abdominal pain for almost a year… because she had a history of GI problems, he did not take her seriously enough to order a scan. She finally took herself to the ER where they discovered the mass in her pancreas. After a biopsy, which to my mind, further hastened the metastasis, she took to her bed and never got up.

   My mother , a young 78 years, was a vital, active, energetic woman who would have lived for many years had not this devastating disease taken her life. I still grieve for her and the way the end of her life unfolded.

   — Chris B.

1. My concerns for early diagnosis and treatment of most cancers seem to reach closed ears.
   When I had my first routine colonoscopy I received a bill from the Endoscopy Center that did the procedure. I was told that because the exam was done to screen for any problems, the bill would not be paid by the insurance company ( I had Blue Shield PPO-private pay). Even though the MD found a couple of polyps, removed them and sent them on to pathology, it was still considered a routine screening. Ergo, no payment.
   So, if you don’t have any complaints, but follow the MD orders to have a routine screening, be prepared to pay.
   I even wrote Katie Couric, to no avail, regarding her push for colonoscopy and the fact that screenings are not covered.
   How many of us will continue to have “screenings” because it is suggested by the MD. Most people cannot afford it.
   I believe most if not all all cancers can be found by screenings. I just don’t believe that most people are willing to pay privately for screening and will wait until it is too late.
   Pancreatic cancer is very hard to physically deal with. I know from personal experience. I am sorry for your pain.
   http://www.caringisnotenough.net

   — NurseTerry

1. Thank you, NurseTerry. My father died on pancreatic cancer in 1963, at 49 years old, leaving a wife and 4 young children behind. It doesn’t seem that in the last 45 years much progress has been made. Without this being seen as a slap at our neighbours, I am just so grateful to be a Canadian where making decisions based on the ability to pay for a procedure is never an issue. Our system is far from perfect but families caught in the terrible grip of pancreatic cancer don’t need the additional anxiety of cost being part of that stress.

   — Joe Blow

1. I lost my dad to pancreatic cancer nine years ago. Today is his birthday. My dad was a big man with a big voice, a huge presence in any room. Many friends said that he seemed indestructible. Like other families, we learned that he had pancreatic cancer after it had metastasized. He lived for six more weeks. We had wonderful Hospice care for him so that he could stay at home, and he died at home. Eating was very difficult for him, so I made him hot chocolate, which he loved. The last six weeks were really tough, but my dad made the most of the time he had left and said his goodbyes.

   — Robin R.

1. I lost my father to pancreatic cancer two years ago. After returning from a business trip, he experienced stomach pains and went to a doctor. He was diagnosed with pancreatic cancer and the diasese progressed at an alarming rate. He passed away 17 days later. My father, who worked out five times a week and religiously went to the doctor, never showed any outward symptoms until the stomach pains that sent him to the doctor just prior to his diagnosis. Its been two years now but my mother, brother and I all desperately miss him. At his death, we all reeled at how fact all of this happened - since then, we have sadly learned that with pancreatic cancer this often happens to patients. It is critical to lobby Congress to provide more funding for cancer research and more funds for pancreatic cancer research. Not to long ago, colon cancer was a death sentence. My hope is that pancreatic cancer will follow in its footsteps.

   — Emily Atwood

1. In memory of my friend Rosemary Andrukaitis who fought with her intellligence, humor, incredible determination and her physical being to beat her pancreatic cancer. She believed research is the answer and was willing to participate in any study to further a cure.

   — Evelyn Scheller

1. This is such a dreadful disease and my heart goes out to those who have lost a loved one to pancreatic cancer.
   The Pancreatic Cancer Action Network (www.pancan.org) is a great resource. The stories told here are very hopeful and I give my best to all of them.

   — Kim

1. My wonderful husband was diagnosed with this dread disease six weeks ago. Although the tumor was in the head of pancreas it had metastasized in his liver ruling out surgery as an option. We are fighting back with chemo and PRAYER, hoping for the best but planning for the worst. So far so good. Last weekend we danced at our son’s wedding!

   — Dian West

1. This summer I worked as a chaplain intern at a large hospital, where I was called on twice to spend time with patients later in the day after they had each received diagnoses of pancreatic cancer. The two patients reacted in quite different ways, which required me to be “present” for them in different ways. These two instances were only a week and a half apart for me, but I consider the time I got to spend with these two women among the greatest honors I’ve had in my life. This post brought it all back to me, and these individuals and their families, along with the other posters and their families, will most definitely be in my prayers.

   — John C.

1. Thank you for these strong and brave voices giving me hope to keep fighting. I too was diagnosed with pancreatic cancer in February, had the whipple, and having been undergoing chemo and radiation. In addition, I have been participating in a clinical trial to test a vaccine against pancreatic cancer cells. My brother died not two years ago from this terrible cancer so this disease is just too close to our family. Each day I have with my partner and my children is a blessing.

   — Lucia Nunez

1. In fond memory of George Wanamaker, who died of this scourge, far too young, in January 1981, age 52, Remembered and still missed by his many friends at the US Department of Agriculture.

   — Judy G from Fairfax VA

1. We lost our father to this cancer 23 years ago, and it still pains us. He was only 53 years old. The last few months of his life was awful - full of pain. As my mother later said, “we wouldn’t let a dog die that way.”

   Although I appreciate the attitude of the survivors, I don’t think the attitude makes a significant difference in surviving. This kind of thinking is a disservice to those who died.

   A 5% remission rate is a lot better than it used to be but is still fairly deadly.

   — Catherine Beach

1. This is a tragic and painful disease. The most reprehensible fact within this issue is that there are cures for all cancers that are not being shared. Hospitals and Insurance Companies can make millions “trying to find a cure”. Such a stupendous and disgusting lie….There are cures and selfish money hungry business people do not care about pain and suffering.

   — Nicci Benson

1. I lost my mother earlier this year to pancreatic/gall bladder cancer. This deadly disease has devastated our family. In a few short weeks my mother went from being a strong out going healthy woman to spending her final days in a hospital bed. Luckily she was not alone when she passed, our entire family was with her when the time came for her to leave our world. What struck me about this disease was the speed and lack of treatment to cure or at least prolong her life. It was difficult to understand that further treatment would have been useless and most likely caused her more harm than good. My mother loved her family more than anything in this world, she would not have wished anymore pain and suffering than necessary. I am glad I read this column today, it has given me the strength to do something proactive to help other families avoid the same fate. I love you Mom!!

   — Luis

1. I lost my father to pancreatic cancer Sept. 16 2007. His birthday was Aug.9th and he turned 53. On Aug.16th he was diagnosed with the cancer. I can’t believe what a whirl wind it all was, but I’m thankful that it was short because of how he suffered. My dad was a strong, amazing man, who was capable of anything. It just doesn’t compute sometimes and he is greatly missed. I do hope for a cure, however if you haven’t been directly affected by this or any other cancer, a cure is not priority(not until it’s you or someone you love deeply) Unfortunately, that’s the reality for most.

   — Molly young

1. My mother learned my father had PC, and was told he’d have 3-6 mo. I coached her I had a friend gone two weeks from diagnosis. My father made it two more months. It was tumultuous and traumatic going through all the gyrations with doctors, nurses, in-home care (shut down and changed to hospice), family trying to adjust and prepare while we watched my father drift off into a morphine daze.

   My heart goes out to all who are caught unaware, both the patients and their families.

   It is most likely my father’s mother died from PC back in ‘76 (she was 76, and it was written off as a heart attack), and by the time my father had it 25 years later, med science had made no significant improvements in survivor rates. I look ahead and wonder where things will be 20 years from now, when I may be facing that devil (hoping it waits at least that long). Based on results, I have to prepare for the possibility that treatment then may be no different than treatment today……..and hope for something better.

   — Gene Lambird

1. I was diagnosed with pancreatic cancer six weeks ago and will start treatment next week, the delay being caused by an overseas move and an attempt to be in a clinical trial. I wish only that the people in the Voices had said more about their diagnoses. As I understand it there are two kinds of pancreatic cancer and one is much more treatable than the other. The location of the cancer also makes a difference. It would have helped me to know more details but I took heart at the notion of being above the 90 percentile and the great value of a supportive caregiver.

   — Sandra Price

1. I feel the pain of each and everyone who has lost a dear one to pancreatic cancer, the most corrosive of all cancers.
   I lost my beloved in March 8, 2002 and a small part of me has been dying every year.

   He was hansome, kind and generous, the consummate sporstman….full of life and a credit to the human race,
   I could go on telling how my beloved was and how so many people came to pay their respect at his funeral.
   He was indeed a man of God.

   This is what I deal with, but I try my very best to go on with life. If there is something I can do to raise more awareness about pancreatic cancer education, please reply and let me know.

   the following poem has been of inspiration to me and I like to share it with all of you…..

   “God looked around the garden, and found an empty space. He looked down upon the earth, and saw a tired face.
   He put his arms around your loved one and lifted him to rest. God’s garden must be beautiful for he only takes the best.
   He knew that your loved one was weary, and he knew they were in pain. He knew that they would never be well on earth again.
   He saw the roads were getting rough, and the hills were hard to climb.
   So he closed their weary eyelids, and whispered peace be thine”.

   To John Kuehne: I feel your pain, I experienced the same treatment by the”un”- medical care givers.

   Sincerely,

   Trinity.

   — Trinity

1. I lost my mother-in-law a week ago, on September 9th 2008, to this horrific disease.
   She was a kind, compassionate and loving woman whose generosity knew no limits.
   The pain of witnessing how her life was taken away from her, little by little every day, cannot be described. Her cancer had no mercy and the battle was over in a little bit less than a year. I will always admire the courage and dignity with which she faced her tragic fate. Rosita, you are dearly missed.
   My thoughts are with the patients and the families that have to live through this. Fight together and cherish every single moment you have with each other.

   — Nina

1. My mom lasted a year after her diagnosis, and died just after 9/11. She was being treated for gall bladder for months before getting the correct diagnosis of PC. This goes back to Dr. Chen’s point today that sometimes a diagnosis can be a death sentence. I don’t feel as angry as I used to, though, because in reading these columns, I am seeing a bigger picture of the limits of medicine.

   — bk

1. I wanted to write and say thank you for sharing the voices of these individuals affected by this awful disease. As you can see from the responses on this feedback section, most people (patients and families) affected by this disease have not received a lot of hope. One of these reasons for this is that most people have never heard of pancreatic cancer until they or a loved one are diagnosed. Thank you, NY Times, for providing an opportunity for everyone to learn about the disease. This is one valuable way that the media can play a big role in seeing the tide turn in this destructive disease.
   I lost my grandmother to PC in 1989 and her story sounded very much like many of those who have written before me. A few years ago I become involved with the Pancreatic Cancer Action Network and it has been a wonderful outlet to make a difference in the future of this disease and to support those currently going through it. If you are frustrated about the lack of progress on this disease and want a way to make a difference, consider checking out your local Pancreatic Cancer Action Network affiliate (www.pancan.org). It has been a blessing to me, I hope it can be for you as well.

   — Christina, Ann Arbor, MI

1. I lost my father to pancreatic cancer in 2001. I was told by his oncologists at The Moffit Center in Tampa, I was not at risk for this cancer. I am a non smoker, female, non drinker, physically fit, normal BMI in my early 50’s. In May of 2005, I was diagnosed with stage 3B pancreatic cancer. I underwent the Whipple surgery at Yale New Haven Hospital, CT and had 6 months of chemo. I am cancer free and feel great! My only problem is a 20 pound weight gain that I can not loose!

   FROM TPP — Thanks for sharing your story and great to hear about your continued good health. Wear those 20 pounds proudly as a badge of honor for the survivor you are!!

   — Jean Meisenheimer

1. Thank you for bringing attention to this devastating cancer that often tends to be under-reported . As the daughter of an incredible man who passed away 4 years ago from this disease, I can assure you that though pancreatic cancer may not affect as many people as breast or colon cancer, it is just as important- because so few pancreatic cancer victims survive. When my father was initially diagnosed with Stage IV cancer in December of 2003, our family somehow clung to the hope that he might be one of the 5% that made it. But he passed away just three months later.

   My father never smoked or drank a day in his life. He was a lifelong vegetarian, exercised regularly and was in good health for his 62 years of age. I say this because common ‘risk factors’ of pancreatic cancer are smoking, drinking, red meat consumption, and obesity. While I’ve gotten to the stage where I no longer ask “why him” everyday- the question of “why” is still important in the research sense. We need more funding and attention to the cause of this type of cancer, and all cancer, so it can be eventually prevented, or at least caught early and treated to give the patient and their families a fighting chance.

   — Padmini Jagadish Rajan

1. Three years ago, my wonderful sister lost her life way too soon to this horrible cancer. Pancreatic cancer receives only a tiny share of the National Cancer Institute’s research budget although it’s the 4th leading cancer killer.

   Those of us who have found the Pancreatic Cancer Action Network (www.pancan.org) are working hard to change that, to substantially increase federal funding for pancreatic cancer research and to provide hope and help to patients and families. There are affiliates (chapters) of our organization across the country–please join one near you. If you’re in the greater Philadelphia area, more than 600 of us will be gathering for our 2nd annual fundraising walk on Nov. 1st in Tyler State Park, Newtown, Bucks County. Please join us. To register, or for more information, please visit http://www.pancan.org/purplestridephiladelphia

   — Robin Warshaw

1. My husband died of pancreatic cancer on November 4, 2005. Everyone here who has lost someone to this disease knows how we’re feeling and what we all went through. Our children were 9 and 14 when he died; he’d been diagnosed five years earlier, almost to the day. This disease still seems as devastating to me as HIV was when it first hit the scene, with no meaningful treatment and no statistically significant survival rate. And yet, such progress has been made in the treatment of HIV, and in the treatment of other cancers and I wonder, how long before there is hope for people who are given this terrible news? I still get a pang every time I hear about someone new who’s been diagnosed. This one still feels like a death sentence to me, even as I am aware that some people manage to survive.

   — Anne Markel

1. About 23 years ago, a family friend died of pancreatic cancer at the age of 33. She had a three-year-old son and a one-year-old daughter. To watch this brave woman fight to survive–and then succumb–was one of the most heart-wrenching experiences of my life. Eight years ago I was diagnosed with a rather rare form of bone cancer. My thoughts immediately went back to “Janet” and her struggles. Bone cancer is also a terrible disease, but it is not necessarily the “death sentence” that pancreatic cancer often is. I had hope and I have survived. Janet’s experience was much darker. We have to do something to give pancreatic cancer patients more hope. Thank you New York Times for letting us share our experiences. All of us reading these comments need to do what we can to fight this scourge.

   — Tom G

1. Last year, my father died from PC. I was diagnosed in June and died before they could even properly stage him. Just a quick look on the Internet (I’m not claiming this is reliable) shows that about 12,000 deaths occurred in the US last year from HIV; but about 34,000 deaths occurred from Pancreatuc Cancer. Maybe it’s time the families of those afflicted put more pressure on to at least find a reliable test.

   — Muezza W.

1. My father at this moment is in what appears to be the last hours of his life. He was diagnosed with pancreatic cancer 17 months ago. My beautiful strong father - successful, kind, and brilliant…this has not been pretty. Rounds of chemo - radiation - and then all the other procedures for the side effects. An aggressive protocol/Virginia Mason - gave us all this time. The end is brutal. We need early diagnosis - I still to this day remember my father wondering out loud.”you mean if I had spent the money for a full body CT scan we would have found it early enough?” Early diagnoses and something that isolates the cancer and doesn’t also kill the rest of the body…and in the end - Compassion - not starvation.
   We can do better than this.

   — Kim

1. I was 42 when I was diagnosed and my first thought was of my little son who was not yet two—he still needed his mommy. I had the Whipple surgery at Johns Hopkins and was given a very poor prognosis as I had a positive margin and it was in my nearby lymph nodes. Still I’m stubborn and had so much to fight for–I went through the standard chemo/radiation treatment only to be told six months later that the cancer had spread to my lungs and nodes in my neck–I was stage IV. Off protocol treatment began, and I’m please to say that it shrunk the growths and I’ve been off treatment for over two years now and living a high quality life with my now 6 year old son and husband. This is a terrible disease that needs much more attention, but for those of you fighting, please know that it is possible to beat the odds.

   — Lori M.