Stage 4 Metastatic Pancreatic Cancer

I like everyone else am looking for the unspoken answer that no doctor is willing to give and actually, truly, can not give. Only God knows the time and hour. I say all that but still seek answers..... please let me have some input ..... my ex-husband was recently diagnosed with stage 4 metastatic pancreatic cancer that already spread to his liver and surgery is not an option because it is "wide spread'. About 20 to 30 1 cm+ nodules were found in the liver. I do not know size of mass on pancreas but the tumor marker test is extremely high. Like most people he started having pain and discomfort in his abdomen with previous pain in his back and was sent for CT scan of his gallbladder - SURPRISE & SHOCK!!! It has been approx 4 weeks since his diagnosis and he is now extremely jaundiced, his skin is yellow and his eye whites get darker/glowy orange almost daily.He has lost about 15 lbs in the last few months as well. He is having the "port" for chemo inserted this week with hopes of starting treatment next week. My question other than your thoughts on survival/prognosis, is do you think it is worth the struggle financially, etc. NOT THAT he would listen at this point but for my piece of mind.

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Dear Purple Heart,

Contact PANCAN at www.pancan.org and they will send you all kinds of information on Pancreatic Cancer. Our doctors have never given my husband a time frame and we didn't ask. I heard Dr. Oz make a comment there other day regarding giving patients a time frame that I agree with. That comment was, "I don't like to give patients a time frame as patients have a tendency to believe us and follow the orders". In other words, I think patients subconciously aim for that time frame. You are right, only God knows the date and time and that is true for all of us. If you would like to see what my husband has been going through since his Stage IV Pancreatic Cancer diagnosis, please check his CaringBridge site: www.caringbridge.org/visit/mervhanson. If you have questions, please contact me through that site. As for deciding if treatment is worth it, only the patient can really make that call. As for my husband, he is very happy he made the choice to fight.

Your family will be in our prayers.

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Grateful-to-my-doc listed great websites another one is LiveStrong - they send you two binders full of info and places to record info - I didn't end up using them it for my mom, but I'm keeping them for the next person I know that gets a cancer diagnosis - really helpful.

My 82 year old mom's oncologist and gastroenterologists didn't want to give timeframes either, however in order for her to receive hospice care she was supposed to have a life expectancy of six months or less. She had a metal stent put in on 4/27/12, a PET scan and visit with the oncologist in May for a diagnosis and is dying right now. Up until approximately three weeks ago she had very little pain - she took 1 Norco in the am/1 in the pm. Four days after seeing the oncologist who declared her to be in great shape, she went on extended relief morphine w/break-through vicodin and then to oral morphine last week.

I just found out that she didn't even tell her diagnosis to some really good friends - I think she was fearful and just wanted to stay in denial. They called wanting to visit her this past Saturday and I had to tell them she's unconscious - they were shocked to find out that she had Stage IV pancreatic cancer - they thought that she was going to rebound from whatever it was she had!

If your husband is extremely jaundiced I wonder why your husband's doctors haven't inserted a stent to release the bile being built up in his system. Even if they considered him "terminal", inserting a stent is considered palliative care - it's a procedure, not surgery. My mom had two deadly bacterial infections from the bile and luckily the gastroenterologist immediately put her on IV antibiotics to kill the infection and then inserted her stent the next day.

My mom had no pain/discomfort or any weight loss prior to her diagnosis. Her jaundice came on overnight and she went from yellow to orange w/in two days and then had the metal stent inserted with no problems/side effects.

So far I think I'm the ONLY person on this website who's glad their loved one didn't "fight", i.e., have surgery, chemo or radiation. My mom was a fearful person and hated anything medical. I'm glad she was just able to enjoy the time she had left the best she could and she made amends to us kids which was extremely important to her (and for us.) The fact that she couldn't remember that she had Stage IV pancreatic cancer is a good indication of her denial system.

Grateful-to-my-doc is right though...every one has to make their own decision. Based on my mom's journey and reading about what other people have gone through, I wouldn't choose to fight the cancer w/any type of surgery or therapies - I'd live every day to it's fullest until my body wore out and go out w/a smile on my face.

Your family will be in my praryers.

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Hi tryingtolive

My brother who is undergoing chemo right now for stage IV mets PC is finding it very tough, he's on the most aggressive treatment and is only 57. My question to you: did your mom have reasonable quality of life in her rejection of treatment phase, and for how long? And may she soon find peace and release...

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Dear Purple heart,
my husband had pancreatic cancer and was very yellow and a stent could not be placed because of the tumor.He has been operated and they took out 14 nodules and had operation(Whipple) he had a chemo (6 months) and now he is 20 months after the OP and he seems to be well.I think the best is to try to fight and to try to find a treatment otherwise the pains should become terrible.The pancreas zone is full with nervous connection specially the spine column...I hope your doctors will quickly find a way for your ex-husband, best regards.

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Thank you everyone.
Will keep you posted.

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Hi OaklandsF,

I'm trying to figure out how to respond to your question! My mom didn't really reject treatment...it wasn't really considered an option. The stent was palliative care and without that she would have died very quickly - the duct opening was almost totally closed due to a tumor pressing on it. (We (kids) were originally told her life expectancy was 3 - 6 months (this was from the gastroenterologist who inserted her stent) and then 6 - 12 months - Mom never asked for a time so the oncologist never gave it to her and we never said anything to her either.

She had slight dementia/confusion and was VERY frustrated by it. I think dying from pancreatic cancer was as a better choice for her than dying from full blown dementia - she saw her father die from dementia 50 years ago and still remembered it (as horrible.) After reading a lot about PC I think the PC contributed to her confusion - enzymes/chemicals screwing up the brain. She also had an issue w/her heart racing two months prior to her diagnosis and the cardiologist poo poo'd it... even stated that maybe she made it up w/her brain issues. I assured him that she didn't dream that she had a racing heart - if anything, she would have denied it if she could have - it had to be bad for her to admit it. She never even admitted that she had PC!

Would she have chosen treatment if she were younger and had a partner? I don't know. She was always terrified of medical procedures even though she was healthy. Her quality of life was dimished the week before she had the stent inserted - she wasn't able to drive anymore and fatigued very easily. After the stent was inserted she still met with friends for lunch, did exercises on the ball and numerous other things until two weeks ago. At her last oncology appointment her doctor mentioned he was glad that she hadn't had chemo because she wouldn't have been able to do those things if she had. (I think the bacterial infections that she had before the stent was inserted did damage to her system.)

If you go to the Caring Bridge website, there's a young woman that's shared her story of pancreatic cancer - her name is Dayna. Her story might help your brother make a decision.

Take care,

C.

P.S. I realize I've written most of this post using the past tense, that's because she's probably dying tonight or tomorrow.

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Purpleheart, your husband has nothing to lose, as I did not when the cancer was in my lung and lymph nodes. You need to stop the metastasis and shut it down. Check out my approach at --- https://www.inspire.com/Chenbaaxal/journal/in-hindsight-i-would-have-handle d-my-chemotherapy-differently/

Though you will have to seize it yourselves, I wish you both "good luck".

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My heart goes out to you and your ex-husband. I recently lost a friend (named Mary) to advanced Stage IV pancreatic cancer. I myself am currently in treatment for advanced breast cancer.

Just to make sure she knew about it, I loaned Mary my copy of the book Anticancer: A New Way of Life. In this book, in chapter six, there's a story of a person who was diagnosed w/ pancreatic cancer, and was only expected to live a few weeks to a few months. The wife of the person diagnosed was desperate for help . . . she contacted a friend--a researcher who later on wrote the book "Foods to Fight Cancer." The researcher combed through literature, and in a few days got back to the wife, and suggested a diet, of sorts, which included very specific foods, for this patient to follow (the wife was good enough to prepare meals for her husband, and followed the dietary guidelines extremely carefully). The patient lived for another three to four years, and (for a while) went back to work during this time.

I'm not trying to suggest any kind of dream hope. But I DO know how important this book is to me, and how I am trying, in many ways, to live an "anticancer" lifestyle. You might want to check the book out, on Amazon.com. Maybe see if you can peruse chapter six, online.

My friend Mary, who didn't like or eat a LOT of different types of foods, had no interest in changing her diet. Of course, it's up to the individual. I just think this is something worth checking out.

I can only wish you the best. This is my second bout with cancer--this last time it had metastasized into my lymph nodes, on the opposite side of my body where I was originally diagnosed. I realize I'm incredibly lucky that the cancer was discovered before it made its way into any other parts of my body. I don't know my future, but I'm trying my best to do right by myself. I truly believe that a lot of dietary (and other) changes I have made in my life, many because of the Anticancer book, have really made a positive difference to my health. If I didn't believe in a LOT of what this book suggests, I would not recommend it to you. The author, an M.D., went through treatment for brain cancer twice. The second time 'round, he really started to look into all kinds of ways to approach his healing, and his life. Eventually, he wrote this book, and I don't think I'm alone in being very appreciative that he did.

Take care,
Det

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Tryingtolive, thank you so much for your long and very honest answer, I really appreciate it, esp during this very difficult time. My brother is not thinking of stopping, but longs for a break and also I think occasionally wonders if it is all worth it... but I do realise one day the chemo might stop working, and am trying to prepare mentally for what to expect. Once again than you so much for your caring reply...

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This is just a small update of what's happening.... Everything is moving so quickly. My husband went to his oncologist on Monday for his pre-lims before his 1st treatment of Folfirinox to begin on Tuesday but regrettably his bilirubin levels are too high and he could not start as planned. He is very frustrated, i think he knows he is running out of time. Tomorrow we go to a surgeon and see if he is a candidate for the stent. He is getting more orange and very weak in his arms and overall body but I think he is aggressively pushing himself to go to work at least. He started to complain today of a likelihood of a blockage and will have to discuss that with doc as well.
Needless to say i am not living with him but desperately think me and the kids have to go back home.
Thank u all again for your encouraging words and stories. I have ordered the anti cancer book and wil continue to post an update.

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Purpleheart,

You (your ex and family) are in my prayers - that he finds out he is a candidate for a stent and that they can perform the procedure immediately. My mom went from yellow to deep orange in two days and within two hours after the stent was inserted her coloring was almost back to normal - incredible!

Please take care of yourself too!

CC

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Will do and thanks again.

It's a concern of my own that this is worst than is being said but I can only take one day at a time.

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Just checking in to see if you found out anything new...thinking of you.

You are smart to take it one day at a time. Sometimes I had to take it hour by hour...remembering to breathe and drink lots of water helped too. (I like diet soda so had to be careful not to get too much caffeine!)

:-)

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:). Killing Coke Zero!!!! Thank you for your concern.

Well, like I mentioned everything seems to be against him/us. I live in the Bahamas and we just suffered a hit from Hurricane Sandy and as a result he was unable to see the new doctor. Hopefully he has better luck next week.

I feel he is getting anxious and thinks he is running out of time as we all know this cancer is extremely aggressive therefore everyday without treatment gives the cancer free reign to roam! He is having new symptoms daily. He is having some strange "nerve" spasms shooting from his abdomen towards his right shoulder which seem to give him alot of discomfort and pain plus he has something swelling in his abdomen that he had me feel and which he says is getting bigger. Liver? Another issue we will have to discuss with the doctor.

Will keep you posted.

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Have you tried calling the Cancer Treatment Center of America? I don't where you live, but here in St. Louis we have Barnes Jewish Hospital Siteman Cancer Center. They are leaders in this area.
I think your ex-husband should try all options available to him. Anything is worth a try. Have faith in God!

Take care

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Good morning everyone:
I have been missing in action for a while but here is an update on my husband's situation......... We recently went to the U.S. to have the stent procedure done, while he was there they also removed 3 1/2 litres of fluid (ascites) from his abdomen. It has been 5 days since the procedures and he is back home in the Bahamas. It was touch and go for a day or so because he passed blood in his vomit and bowel movement which made them think he had some internal bleeding. Thank God that was not the case.
His bilirubin level is holding at 11 which means he still can not have the chemo. He lost more weight and has severe constipation. The fluid built up again and in addition his legs and feet are now swollen. He is barely urinating and is constipated. He is on a prescription diuretic for the fluid but it is not working. He called for his priest to visit and has prepared himself for the inevitable. Do you think he is to the point of actually dying?

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Good morning. Just wanted to let everyone know that my husband died yesterday morning, 12-01-12.

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So sorry Purple Heart....heart goes out to you and your family. He didn't have anywhere near long enough.... Praying they soon find a way of detecting PC much sooner and give more people a chance

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So sorry to hear about your loss. This disease is a nasty one. May God grant you the strength and peace to help you through this. God bless and keep you.

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Thanks everyone. Thank you for the advice and support but the cancer was too aggressuve.

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