What to do after being diagnosed with Stage IV pancreatic cancer

I've just received the news that I have stage IV pancreatic cancer that has metastasized to the liver. I'd like advice on what are the treatment options that would prolong my life without unduly diminishing its quality. I'd also like to know the practical things I should consider in getting my affairs in order. Thanks in advance for the advice that folks out there who have gone through this experience with a friend or loved one would give.

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John: I am so sorry for your situation. Please do not throw in the towel yet. I don't know a lot about your cancer, only what I hear about a certain movie star who is battling it. Do your doctors suggest any type of treatment? As you know, the best source of information is online. Good Luck, I will be thinking of you, and keep us updated.

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John: See post by pj and the replies. Hope it helps.

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Thanks Chemo2. I still have to see an onco and discuss treatment options. Can you give me pointers on how to break the news to my loved ones? I only received the confirmation last Friday.

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Hi johnenri,
I am into my third year of my battle agains pancreatic cancer. When diagnosed, it had already metastasized into my liver and peritoneum. I was told, due to numerous lesions, surgery was not an option, neither was radiation. Gemzar is the chemo drug of choice for pancreatic cancer. Xeloda, which was originally used in breast cancer patients, is also an option. I am on both of these with good results. The next line of defense, should these quit working, is Tarceva.

A good attitude and a sense of humor as well as a support system go a long way in fighting this battle.

Try not to be frightened by all the decisions and take each day at a time.

My prayers will be with you.

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Hello mzmarcia,
It was truly encouraging to hear that you are into your third year. Often people with this condition only have up to a year to live because this is a particularly aggressive form of cancer. I don't mean to sound pessimistic but for me I know I won't be around forever and I have to be pragmatic enough to set my affairs in order for the sake of my loved ones. If you have any pointers in this regard they would be highly welcomed.
Could you describe the composition of your support group and give me tips on how to form one?
When I see my onco I will bring up the drugs you enumerated.
I'd like to thank you for being an encouragement to me specially in these trying times.
My prayers for your continued improvement go out to you as well.

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Good morning Johnenri,

Some people feel it is morbid to talk about wills, directives, etc. I think that everyone needs to have these things in place whether they have been diagnosed with a life-threatening illness or not.

My husband and I have updated our wills. We have made our directives for end-of-life measures. I have not yet, but do intend to go to the funeral home and pick up the form to complete for my obituary and make tentative arrangements. These things can all be changed at any time if needed and I will not make any arrangements that cannot be changed to suit my family's needs when I am gone. I know my funeral will be for the comfort of those left behind, especially my Dad. He had such a hard time when my brother died of leukemia 20+ years ago and having the very best was a big comfort to him. That said, I do not want a fortune spent on burying me which is why I want to go ahead a pick out my casket, etc.

I realize that I am very fortunate to still be on this earth and feeling as well as I am. I have lost a couple of friends in the past two years to pancreatic cancer, one who was diagnosed after I was and one who lived three years after her diagnosis and surgery, even after having a really bad first year when she was in a coma for several weeks.

My oncology nurse had a pin on last week that read "Having cancer sucks". It does but I have come to realize that there are worst things people face every day.

I figure that as long as my good days at least equal the bad, it is worth the fight.

Hang in there. I'll continue to pray for you. I truly believe the prayers of others has been my salvation during this battle.

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Just be honest. Wait until you speak with your oncologist so you know your options be/c family/friends will want to know. Hold onto it until then and then you can tell them exactly whats going to be happening. As far as affairs.....don't freak out, living will in order? At least. Right now just get with your docs and prepare for treatment. You'll be looking at radiation and chemo, Im sure whilst you'll have downtime to take care of some of that other stuff...but DO NOT MENTALLY GIVE UP! You have a WORLD of life and opportunities ahead of you and a fight but do it and let others help where they can. Ok?

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Hello Rock44, Thanks for your advise and words of encouragement. It's just so difficult to search for a way to communicate such devastating news to your loved ones knowing the impact it will have on their lives.

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Hello mzmarcia,
Yes, having a spiritual source, that you can tap through prayer, for comfort and encouragement is truly a great asset.
I find this specially effective at night when I feel so alone and have difficulty sleeping. Praying for His peace that surpasses all understanding has a potent sedative effect on my soul.
May you have a nice and blessed day!

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John,
3 years ago, after father's day we received the news about my father. My dad had Pancreatic Cancer. It had spread to my dad's liver and the doctor gave him 3 months to a year. When you get that kind of news you pray for the year..you want more but you hope and pray for the year. My dad went through chemo but unfortunately it was so advanced that in less than a month he passed away. In that short time, we (my dad, mom and sister kept the dialogue going) We talked about everything and no one was in the dark. Looking back, I know how important that was! Being there for one another, talking, having a close family and friends, through faith and prayers...that's what got us through it. We found strength!

Don't give up the fight John! My dad kept fighting to the very end!! I will never forget that! Don't give up on hope! You and your family are in my prayers.

Michelle

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Hi Michelle,
Thank you for your advice on the importance of developing stronger family ties at a time like this. I can't agree with you more. I started with a full disclosure of my medical condition not only with my immediate family (wife and five kids) but also with my brother and sister as well.
I also hold a family meeting on Sunday, after lunch, to discuss and lift up in prayer our mutual concerns. My kids were timid at first but they're coming around to seeing the value of what we're doing.
On another matter, were you able to check out alternative cures for pancreatic CA for your father, before he went to be with the Lord?
I'm currently undergoing Gemzar treatment but I'm looking also for alternative cures.
Thanks for your reply. I appreciate it.
Sorry about your dad, I'm sure you miss him dearly.
Johnny

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Although by trial-and-error, mzmarcia gives an example of Xeloda, which was originally used in breast cancer patients, is an option for pancreatic cancer. Researchers have tested how well a pancreatic cancer patient can be treated successfully with a combination of drugs commonly used to fight lung, pancreatic, breast and colorectal cancer. They have been able to report prospectively to a physician specifically which chemotherapy agent would benefit a cancer patient. Drug sensitivity profiles differ significantly among cancer patients even when diagnosed with the same cancer. One-size-does-not-fit-all.

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Johnny,
Everything happenned sooo fast (3 weeks) that we didn't have the chance to explore alternative treatments. My dad did chemo (can't remember the name), but it was very difficult for him and the cancer had taken over. The last week he was on an oxygen tank because of difficulty breathing. Fluid was in his lungs. Even in the last week, I thought we had more time...I was looking up the best hospitals, talking to Medical Directors for advise, considering clinical trials.. time wasn't on our side.
Stay strong as you start your treatment! Ask a lot of questions to your doctor (I am sure you are) ...your doctor can offer options. I wish I could provide more but know that you and your family are in my thoughts and prayers!
Take it one day at a time. Deep Breathe. Laugh.

Michelle.

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To Mzmarcia,
Your optimism and inner strength is a true inspiration to us. May you continue to have the strength to maintain this healthy attitude. My dad was just diagnosed with Stage 4 PC that metastasized to the liver. We met with various oncologists, but are at a loss with which regiment to begin. Any advice? Thank you!

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John, I don't know anything about pancreatic cancer other than it is serious but my oncologist just told me last week that she has a patient that was dx 7 years ago and is still coming in for her check ups. Never give up.
Comforting (((HUGS)))
Kneesaa

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The Long-term Survival of a Patient With Pancreatic Cancer With Metastases to the Liver After Treatment With the Intravenous -Lipoic Acid/Low-Dose Naltrexone Protocol
Burton M. Berkson

http://ict.sagepub.com/cgi/content/abstract/5/1/83

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My husband had the whipple procedure in December 08. He was told he had stage II pancreatic cancer with no metastasis and no lymph node involvement. The cancer was actually in the ampular vater area. By the end of March, he had finished the chemo and radiation. His CA19.9 went from over 600 before surgery, to 400 after surgery, to 13 after treatment. We were told anything under 30 is normal. He had been feeling okay, eating well, and maintaining his weight. Then the day before Thanksgiving 09, we were told his CA19.9 was over 400. The doctor ordered a CT scan which came back clear. Blood work was repeated and 4 weeks later the CA19.9 was over 800. He then had a PET scan which also came back clear. We were then sent to Vanderbilt for a second opinion. That doctor told us the same thing the doctor here told us. "It isn't wise to treat based on numbers alone." More blood work was done and showed the CA19.9 to now be over 2000. Another CT was done with 5 mm sections instead of 10 mm sections. My husband's only new symptom is fatique. But he's working 4 days a week for 10 hours a day which would make lots of us tired. His regular doctor is sending him to have a scope with an ultrasound and the ability to biopsy if needed. My question is, "Has anyone had their CA19.9 raise like this and the doctor NOT be able to find the cause?? It's like waiting for the other shoe to drop. Any info would be greatly appreciated.

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Johnenn

I too was diagnosed Stage IV. Sounds like Mzmarcia and I are treated with the same chemo. I will soon began my 2nd year. No, it's not curable but some have many, many months ahead.

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Hello John,
I too....was diagnosed with stage IV PC that has metastasized to the liver. Had 2 rounds of chemo and 2 operations. It's going to be 2 years the end of the month that I cerebrate "No evidence of disease"

You just hang in there and keep fighting.
Never give up!!
I'll keep you in my prayer....

Myty....

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Hi, John,

I am not a pancreatic cancer survivor, but Iost my father to this disease last month. We planned on two innovative treatments, but he was in the very late stages of the disease when he started the treatment. There is a drug known as metenkephalin (also known as opiod growth factor) which had good results at extending life and even causing remission in the pancreas in one out of 16 patients and in the liver in two out of sixteen patients. It is in the U. S. clinical trial database. It was performed at Penn State, and even though the drug is not FDA approved, we found out through one of the researchers that it is available as an import. The hospice doctor was surprised that my father had no jaundice a week or two before he died, but the oncologist was not sure that this was significant. The other treatment we looked at (but ran out of time to try) was Neoplas. See info at www.neoplas.org. I think that this is for real, and so did an oncologist that had previously treated my father for prostate cancer. It is a combination of alpha interferon and Lovastatin. Make sure that you ask about side effects - the alpha interferon is known to cause severe depression, even thought it does not have the side effects more traditionally associated with chemotherapy drugs.

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