More comments on Pancreatic Cancer - NY Times Blog Sept 08

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

39 prior comments on pancreatic cancer

My sister Jean died one month ago on August 20.2008 at 9:25.am. She only lived 4 months and l week after diagnosis. She was given the standard treatment Gemzar and Tarceva. Halfway through the chemo she suffered a stroke do to blood clots from the cancer. She thought the pain and flu like symptoms she had was from the drugs. Her doctor never mentioned anything about blood clots. After about 8 weeks of treatment which was interrupted with hospital stays her CAT scan showed no improvement what so ever and was told there was really nothing more they could do. I packed my bags and with my 92 year old mother flew to Virginia to bring her home from the hospital. The doctor said she had 3 months. She died 4 days after being brought home. I am just so thankful that I was able to get there and be with her in her final days and try to make her as comfortable as possible under these horrific circumstances. Once hospice started the dilaudin infusion she fell into a relatively peaceful sleep and never really woke up. Jean is greatly missed by her husband, her two daughters, her four grandchildren, her two sisters, her mother and friends and family alike. We need to find a cure for this disease and an early diagnostic test as a prevention. Stand Up To Cancer and Pan Can are two great organizations that are trying to make a difference. Valerie Lopez
— Valerie Lopez

Many thanks to those of you who have shared your personal stories, and to those who have taken the time to read them. I am less than seven months away from my medical school graduation and wish that my father was here to see it. After several months of vague abdominal/back pain and persistent weight loss, my dad was diagnosed with pancreatic carcinoma after it had metastasized to his spine. He was initially given 3 weeks-months to live, and survived 3 years beyond those expectations, though they were extremely difficult years with complications mixed with periods of stability that we interpreted as triumphs. My family was fortunate to have had great support from family, friends, and our church, as it is with the help of good company that gets people through the worst times. These experiences strengthened my pursuit for a career in medicine and the many challenges that accompany it. I appreciate the effort to increase awareness and support for pancreatic carcinoma through this health blog.
— Betty Huo

My brother died this past year, of a rare form of pancreatic cancer: non-functioning islet cell carcinoma. By the time he was diagnosed, the cancer had spread to his liver and bones, ruling out any faint hope of survival. He got good, aggressive care, which avoided surgery and allowed him a year and a half to finish two books and see his son off to college. The paucity of scientific research on pancreatic cancers of all types was shocking to me, given the well-oiled machinery that publicizes cancer research, and the relatively high incidence of these cancers.
— Rita Casey

My father, Dave, passed away at 64 from PC this spring, about 5 months post-diagnosis. His ordeal was terrible for everyone involved - family, the doctors, and most importantly, him.
In my experience, the most humbling aspect of this disease is the amount of help- and hope-lessness involved, it’s alot like watching a slow-motion car wreck destroy someone you love bit-by-bit: everyone is aware of each painful moment, and no one can do a damn thing that definitively stops the progress. Slow it down, yes, but stop it, no.
I can’t help but wonder, why does this disease not get more research funding worldwide?
— greg canavera

My friend had horrible headaches after FLU symptoms in mid Sept … doctors were trying to pinpoint the anemia and then finally found pancreatic and liver cancers
She died less than 6 months later, and although cancer will be written down as the cause of death, I firmly believe it was the idiopathic anemia that took her life: ‘the chills’ rapid heart beat, shortness of breath. I suspect it was Autoimmune Hemolytic anemia that took her life.

FIND ‘the hard to find ANEMIA’ - That is part of CFIDS
http://www.valdezlink.com/re/helps2.htm

This is what I tried to share with Dr. Ron Davis
http://www.valdezlink.com/re/myletertoama.htm

We should reconsider that cancer starts one place and spreads from there to somewhere else. We should suspect exposure to monobutyl ether as cause of these and many other cancers. Where it shows up first is irrelevant.

Spend your research dollars on finding ways to stop an autoimmune system

(check into glycobiology)

& in finding the anemia that evades medical science. What we call ‘flu’ has nothing to do with a virus. It is exposure to BUTYL. Congress needs to ban this chemical that is too strong in many cleaning products, paint, etc
— Margaret Diann Hursh http://www.valdezlink.com/re/medhelp/whatithinkthefatigueis.htm

I just wanted to add to Sangeetha Kolluri’s post above. In my work at the National Pancreas Foundation I have been struck mightily by the courage and persistence of the health care professionals and researchers who seek to unlock the mysteries of pancreatitis and pancreatic cancer. Pancreatic science is difficult to do, and NIH funding (which supports the lion’s share of research) is appallingly low considering the mortality of these diseases. And yet these medical professionals soldier on. They need our help.
One way to help is via advocacy. Each year, organizations such as NPF join with the Digestive Disease National Coalition on a weekend (usually in early March) in Washington, DC to educate Congress about the need to increase funding for research. Patients and caregivers are highly encouraged to join in this effort.

Also, the NPF receives inquiries from patients around the world looking for referrals for good medical care. We would love to hear from anyone who has had a positive experience that they would like share with us. We can be reached at info-at-pancreasfoundation-dot-org.
— Sue DeMarco

I am a 5-year survivor of a related (and rarer) cancer with an equally grim prognosis– bile duct cancer. In my opinion, the funding of cancer research has more to do with politics and pressure groups than anything else.
The survival rate for early-stage breast cancer is now 98%– but how many marathons, fund-raising walks, pink-ribbon campaigns, etc. are there? I always joke that I’m going to start a bile duct cancer marathon, and I’ll win the race because I’ll be the only runner in it.

Tomorrow I go to see my new oncologist, to see if I need to start chemotherapy again…

FROM TPP — Good luck to you. you are right that our focus and funding priorities are often skewed when it comes to cancer. Lung cancer — and the lack of funding and awareness and compassion for that disease — is a prime example.
— Kristin Johannsen

My Dad was stolen from us in 1976, at the tender age of 54, due to pancreatic cancer. From the time he started to have stomach pain in September until the time he passed in November, it was barely eight weeks. My wife’s friend, 52, died from pancreatic cancer two years ago. She managed to live almost three years after being diagnosed, although it was very difficult at the end. I guess the time that medical science can stave off the disease might by some stretch be considered progress. Tragically, the disease is ruthless, a killer. My thoughts and hope go to all those, and their families, fighting the fight. Keep on.
— Robert Traub

My heart goes out to all of you who have written in about the losses of loved ones.
It is very bitter to think of how much progress we could make with this and other diseases if our government were to devote the $700 billion to research and health care that they are instead using to bail out financial corporations who made bad real estate gambles.

As a nation our priorities are badly skewed.
— SKV

My friend Ida from the San Francisco Gem & Mineral society passed this year from this disease. She was older, but only this could have brought her down. She was bright & beautiful and I wish I’d had more time with her. Thank-you, Ida, you are missed.
— suzanne

In response to Sangeetha’s comment: I don’t think any of us affected by pancreatic cancer can say we don’t understand the complexities of diagnosis. But is there a way to earlier diagnosis? I believe firmly there is. While a full body scan every year is impractical, perhaps, just like colonoscopies and mammograms, a full body scan every three to five years after the age of 50 can increase the chances that rare cancers are caught and treated early? The major reason why we don’t do this now is cost- another reason why rising health care costs seriously need to be contained. They are most expensive in that they cost LIVES.
— Padmini Jagadish Rajan

Unfortunately, the 5-year survival rate for people with advanced pancreatic cancer, like Dr. Davis, probably IS close to 0%.
My mother died of the disease last spring. We need to join the fight for more pancreatic cancer research ( go to pancan.org and lustengarten.org) and join the larger cancer community for more research dollars for cancer overall.

Anyone who wants to read an op-ed I wrote on Stand Up to Cancer, and a piece about my mother and the need for more pancreatic cancer funding, can visit my website (www.martinkimel.com) or Google my name (if the Times doesn’t allow my website link).
— Martin Kimel

Lustgarten.org. (Sorry.)