My mom just diagnosed. overwhelmed

becky0999 · New User Joined: 10 May 2007 Posts: 5

My mother is 62. She has had stomach pains off and on for a year. Her doctor told her it was her acid reflux and h. pylori bacteria. About a month ago the pain got much worse in her back. She thought it was just back pains, nothing unusual for a 62 year old. Then the jaundice and the horrible stomach pains started. She thought the pylori was back again or that she had a stomach bug. She couldn't eat or drink with out vomiting or burbing for hours. After a few days of this she finally agreed to go to the ER because she just knew it was her gallbladder.

Unfortuantely the CT scan and ultrasound showed several tumors on her liver and a rather large tumor on her pancreas. They said it was stage 4 and they couldn't operate. they wanted to put stints in to relive the jaundice and hopefully redirec the bile drainage because the tumors were obstructing drainage. She declined because she said jaundice didn't bother her pain did and unless it would end the pain it was a no go. He coudln't tell her that the pain would end, so she checked out of the hospital and went home.

I guess I just don't know how long she has or how bad it is at this point. I would think that you couldn't live long with jaundice and the horrible pain she is in. Then the fact that she can't even drink water with out upsetting her stomach. Yet, she walks around and semi functions thru the pain. She is incredibly strong and is believing in god. She is putting on a brave face for all of us.

What should I expect in the coming weeks/months? Her oncologist said she could take chemo to try and lessen the pain, she is considering it.

Thanks for any advice you can give me.

Becky

reenie

Hi Becky, I bet you are overwhelmed! A stage IV dx is overwhelming to say the least. I am sorry to hear your news. I guess since you've found this forum you've probably read some pretty dismal posts. I so wish there were more encouraging things we could share. This disease is sneaky so by the time you know it is there, it is often too late. This is the harsh reality of pc.
My husband, Sam, and I were pulling into the oncologist's office for the first time when the cell phone rang and it was the GI office calling to say Sam had H. Pylori. We actually left the oncologists that day thinking that was the cause of the pain. I am glad you mentioned it in your post though- every little connection we can make may bring us closer to some early warning signs.

You will no doubt read a few posts from folks who are beating the odds. As happy as I am for those precious few, they are by far, the exception. How they endure I do not know- they don't know- the doctors don't even know. What I do know is, Sam had a good attitude, Sam had faith, Sam had an absolute will to live- none of these helped. So no matter how your Mother's case unfolds, I am certain she has those attributes too.

The chemo choice with a stage IV dx is a personal one. For us, it may have given Sam some more time, it may have only made us feel that at least we were doing SOMETHING. Who knows? Gemzar gave him what he liked to call "Mack Truck Day" on the 2nd day after an infusion he felt like he had been hit by a truck. Oxyliplatin was too harsh for him by the time we got it. So now it is easy to say I wish we hadn't put him through all that, but how do we know that wasn't the reason we had the few months we did?

If she decides not to pursue any treatment, please consider hospice. I won't go on about it because I fear I start to sound like a comercial, but so many of the hospice nurses have told me the one thing they would wish for was the chance to help sooner, and to develop a relationship with the patient and family. I know it is hard to even consider because it fells as if you are giving up but you can recieve hospice services long before you begin the "active" stage of dying.
Enough for one night, here you were overwhelmed and I fear I have added to your burden. Please knwo I will be keeping you in my thoughts and prayers.
Peace, Reenie

JenniferS · Regular Joined: 14 Jan 2007 Posts: 15

I am so sad to hear about your mom's diagnosis. I lost my 67 year old beloved mom on January 29, 2007 to the same horrific disease. Similar to your story, she was told she had acid reflux after she experienced significant fatigue and some abdominal pain. That was back in October. She was officially diagnosed with Stage 4 metastatic pancreatic cancer that had spread to her liver and lungs over Thanksgiving and passed away just a mere 2 months later. With Mother's Day coming up, I can only imagine how you must feel.

I do not want to take away any of your hope and pray that I am not doing that but the chemo in Stage 4 is not curative, it will only hopefully prolong your mother's life and from what her oncologist told her, it might prolong for months not years. My mom was literally the picture of health - she was in amazing shape (worked out every single day), ate well, never smoked or drank, had more energy than anyone that I knew. We are still in a state of shock, even months later.

As far as what you could expect if she does opt to forgo chemo (as my mom did), she will just sleep more and more everyday. My mom never got jaundiced and said she was never in pain but instead took this intense eastern medicine herbal treatment consisting of soaking her body in herbs to alleviate the water retention and took a ton of vitamins. I truly believe it did help her body fight off the pain...I was not a true believer but am now. In her last week, she could no longer walk on her own and slept almost the entire time and we had hospice there around 15 hours a day.

Please let me know if you have any other questions. My personal email is jrseu71@yahoo.com and know that I am thinking and praying for you.

Jennifer

becky0999 · New User Joined: 10 May 2007 Posts: 5

Thank you both for sharing your stories with me. I know it can't be easy for you, I really appreciate it.

My mom has decided to let them put the stint in, if they can. She will not let them do any type of surgery or bag on the outside, only internal stuff thru the scope. ERCP I think is what they called it. Her pain is better at the moment, but she is horribly jaundice. She is sleeping most of the time or just laying around.

She still think chemo will help her, that maybe things are not as bad as the seem. I'm worried for her because I have read too many stories about how awful this disease truly can be. Also, she smokes, she is so weak, jaundice, not eating ALREADY. Chemo will only make that worse, right? She ate a half of a fruit cup yesterday, all day. She says her stomach hurts from hunger, but if she eats it hurts from the food. It's a no win situation.

I will update everyone on the results of the scope. We are hoping they do it today or tomorrow.

rlee · Site Admin Joined: 15 Jan 2006 Posts: 245

becky0999,
I very sorry to hear about your mom. Chemo is worth considering as some patients do feel better after a few treatments. Probably Gemzar alone is the only one worth considering as the others tend to have more side effects. Otherwise, palliative care is definitely worth pursuing. Best wishes.
_________________
RLee, MD

Any information provided is NOT intended to provide specific medical advice to users but rather to provide users with information to help them better understand their health condition and related care. All readers are strongly encouraged to consult with a qualified physician for answers to their personal medical questions.

doggus · New User Joined: 09 May 2007 Posts: 6 Location: Lincs, UK

Hi becky, I am in almost the same situation as you - mum has secondaries in the lungs, liver and lymph but no jaundice. She has zero appetite and is getting weaker because she can't eat much. Like your mum, she is in bed most of the day sleeping, we take her downstairs on a stairlift for a few hours in the evening. We are debating chemo, she is adamant she won't take anything which makes her vomit but she may look at Gemzar and/or Tarceva (Herceptin).

I just wanted to empathise and say you are not alone, our lives have been turned upside down. I keep trying to make mental plea bargains - eg please make her stay like this for a few years, don't let her get any worse as I can't face the thought of her dying.

My mum is a good person, she was a teacher for 40 years, never smoked, always kept fit and had the diet of an Olympian. It is SO not fair, isn't it?

freeio · Posted: Tue May 15, 2007 4:57 pm Post subject: Surviving through stage IV

Becky,

I am one of those few survivors who continues to live 2-1/2 years after diagnosis. PC is very difficult, and the few chemotherapy agents used to treat it are no fun, I assure you. I am currently on Gemzar and Oxaliplatin by infusion, plus Tarceva taken orally. The best that the oncologist says he can hope for is to slow the spread, and nothing more, even with this three-drug approach. Each chemotherapy drug has its side effects, and these may or may not be worth it in your case. The Oxaliplatin is especially harsh, and affects my speech and my computer work. Your mileage may vary.

If you are interested in my experience, and how we have dealt with pancreatic cancer, please check out my cancer blog at http://www.diehlmartin.com/cancer.html The emotional roller coaster is intense. With a great wife and wonderful friends, it has been possible to do much better than just survive, and to continue to live with it, as much as my limited strength allows.

By the way, the stent is probably a good idea. It is not a long term solution, but it can reduce the ever-increasing itching from the biliruben which is what causes the skin to turn yellow/brown. They can usually do that with an endoscope, which means that no big surgery is required.

Best Regards,

Diehl
_________________
-------------------------------------------------
whipple procedure, Oct. 21, 2004
28 days of radiation
56 days of Chemo using Xeloda
diagnosed as progressive recurrent pancreatic adenocarcinoma (Stage IV) Jun. 20, 2006
was treated with gemcitabine, oxaliplatin, and tarceva, which all failed.
Cancer blog: http://diehlmartin.com/cancer.html

becky0999 · New User Joined: 10 May 2007 Posts: 5

thanks for all of your input.

My mom supose to have the stint put in tomorrow. Her blood levels are low and her blood is thin. She is getting plasma and some blood medicine. They said that if her blood is better, they will do the test tomorrow. They are not sure if they can get the stint in, but they are going to try. She has not been able to eat or drink anything since yesterday. they said the toxins in her was at very high levels.

Her cancer marker came back over 400. Is that really high?

freeio · Posted: Wed May 16, 2007 12:05 pm Post subject: Cancer marker

400 is high, but not super high. I have corresponded with people who reported CA19-9 marker levels of over 25,000. Last Monday, mine was measured at 160, which is the highest mine has ever been. The lowest background level they ever measured on me was 7, and that was post-Whipple. several months after it looked like they had removed all of the cancer.

Best Regards,

Diehl
_________________
-------------------------------------------------
whipple procedure, Oct. 21, 2004
28 days of radiation
56 days of Chemo using Xeloda
diagnosed as progressive recurrent pancreatic adenocarcinoma (Stage IV) Jun. 20, 2006
was treated with gemcitabine, oxaliplatin, and tarceva, which all failed.
Cancer blog: http://diehlmartin.com/cancer.html

Big Sister · Experienced user Joined: 02 Nov 2006 Posts: 69

Hello, Freeio -- So good to hear from you again. I have thought of you and your struggle against pancreatic cancer quite often since my brother died in December. Your survival gives us all hope. Be well, enjoy your days, and know that strangers are rooting for you.

Pat
(Big Sister No More)

freeio · Posted: Wed May 16, 2007 8:12 pm Post subject: Simply a matter of time

Pat,

It is good to hear from you again. Yes, I am still alive, and still posting here, but not so much since the energy level is vanishingly close to none at all. So far, I have been able to work 32 hours per week as an electrical engineer (telecommuting, since the commuting is too much for me now), help Monica in our photography business, and do my church activities. How much longer this can go on I do not know. I know that my time is short, but do not know when it will be up. So I continue to smile my way through life, since I have no real reason to complain. After all, this is merely a total body failure - it is not as if it were a moral or spiritual failure of some kind.

Keep helping people out, Pat. You can let them know what is probably ahead, and at least relieve the uncertainly of not knowing.

Best Regards,

Diehl (freeio)
_________________
-------------------------------------------------
whipple procedure, Oct. 21, 2004
28 days of radiation
56 days of Chemo using Xeloda
diagnosed as progressive recurrent pancreatic adenocarcinoma (Stage IV) Jun. 20, 2006
was treated with gemcitabine, oxaliplatin, and tarceva, which all failed.
Cancer blog: http://diehlmartin.com/cancer.html

kmeshelper

Dear Becky,

Please know many of us share your pain while watching a loved one suffer. Our Kathleen has been put in the Hospice Unit for pain management this week. PC can cause unbelievable pain. She was at an 8 for hours Wednesday into Thursday.

The lesson in our tale is that you should request a consult with a pain specialist! Since your Mom doesn't want anything invasive, there ARE procedures that can block the pain. A Celiac Block is just one. Kathleen is probably going to have an epidural catheter put in tomorrow. They say the procedure is identical to having an epidural during childbirth - just different stuff in it and a different placement on the spinal column.

Pain specialists also know how to mix drugs we don't always associate with IV pain relief to good effect. Also, depending on a patient's tolerance, a pain specialist can order higher doses of pain relief that most other specialists are not comfortable ordering.

With this kind of expertise Kathleen finally got good rest night after 2 weeks of not more than an hour here or there. We will learn tomorrow if this kind of protocol can be continued at home or whether we'll have to stay in the Hospice hospital unit til the end. We're hoping for home. I'll post to let everyone know how it went.

PS: Kathleen's CN19-9 was 657,000 when first diagnosed on 3/23/06. With Gemzar/Tarceva only she was down to 2200 last June. Her counts only really started to rise again last month, when her body finally started to completely reject the chemo.

So everyone should at least approach "palliative" chemo care with hope.

Every day is a new adventure!
kmeshelper - Sandy
_________________
stage 4 unresectible pancreatic diagnosed
2/23/06 at age 44
Gemzar/Tarceva til 4/24/07

rlee · Site Admin Joined: 15 Jan 2006 Posts: 245

400 is high, but it's really the trend of the numbers with treatment which will be most hopeful.
_________________
RLee, MD

Any information provided is NOT intended to provide specific medical advice to users but rather to provide users with information to help them better understand their health condition and related care. All readers are strongly encouraged to consult with a qualified physician for answers to their personal medical questions.

becky0999 · New User Joined: 10 May 2007 Posts: 5

thanks for the clairfication on the C19 numbers. I suppose we were hoping that maybe it wasn't cancer or maybe it wasn't PC. Her liver biopsy confirmed that it is indeed pancratic cancer. they did get the stint in, her jaundice is getting better by the day. Unforunately her energy has not returned, she hasn't really gotten out of bed since she came home. She is blaming it on a fever that will not go away.

thanks so much for the info/support. I will update you all on her oncologist appt later in the week.

Big Sister · Experienced user Joined: 02 Nov 2006 Posts: 69

Becky -- We are all with you during this difficult time. This forum is populated with people who have lost loved ones to Stage 4 pancreatic cancer. Rare is the patient who participates here except those who have had the Whipple surgery. Even the Whipple patients have little energy to write and so their loved one are the communicators. The exception is Freeio who gives hope to us all and who wrote you last week.

The disease is horrible -- horrible to have and horrible to watch. It is a relentless killer, a sapper of life, a murderer of hope. Having said all this, please allow me to give you some information which may be helpful although hard to hear:

1. Why a stent? Because of her pancreatic cancer, the tumors have blocked your mother's bile duct and so the bile, once needed to digest her food, finds its way into the blood stream. The stent will help drain the bile from her system and make her less yellow and more comfortable, but draining is not related to a cure. In my brother's case, blood filled with bile turned him orange, made him itch and hiccup. A stent helped but not for long.

2. Why doesn't she eat? Lack of bile and other enzymes produced by a healthy pancreas make digesting food difficult. You can try to help her eat but she really isn't interested and can't. If she does eat it will be small amounts. If she is able to keep it down, the food isn't processed well and she will weaken and lose weight anyway.

3. What's next? If your mom has been diagnosed with Stage 4 pancreatic cancer, there is not much hope that she will recover whether or not she has always been strong. If chemo is an option, it may prolong her life for a time but not for long. The downside of chemo is that it's rough for the patient; most on this forum say they would never recommend it for their loved ones, unless a Whipple came first. Stage 4 patients usually do not have a Whipple option.

May I suggest some practical things during her decline, things that helped all of my family cope:

Turn off your emotions if you can. Grieve later when your mom is at peace. For now, make sure that the practical things have been done and that you know her wishes for her final placement.

If you haven't already done so, you or your father should get a power of attorney and be sure the will is current. If she owns a house, the power of attorney will enable you to make sure the title is in the proper name. If she has insurance, know where the policies are. If there are retirement monies coming to her, contact the plan administrator for what-to-do. The power of attorney is nullified once she passes.

Make sure you have at least 25 copies of the death certificate done at the time of her death. I am not callous with this advice -- you don't want your life unraveling later when you're in no condition to perform these tasks. That's all you can do now.

Emotionally, tell her over and over that she's been a wonderful mom, a role model to you and your siblings (if there are more than you). It's important that she feel your touch and hear your words whether she's conscious or not. Read to her, sing to her, share happy memories with her, brush her hair, do her nails. Later, you will remember that you kept the connection with her until the last breath. That alone will give you comfort to go on despite your grief.

I trust you are not upset with this advice. Please know it's sent from the heart. As I said earlier, we all know what you're going through as we've all been there. I buried my beloved brother 4 days before Christmas after just 8 weeks to the day from diagnosis. He turned 61 during his final weeks. Eight weeks is about average.

YOU will have to be the strong one. My brother's last days were horrible for him and the family who watched. We had hoped he would go peacefully but the ravages of the disease, so sudden, so relentless, made that wish impossible. The disease came on suddenly. It never was operable, never affected by chemo, never responded to anything yet the pain grew worse and he grew weaker until those final three days that everyone wishes could be erased from memory.

Neither his wife, nor his kids, nor I have ever spent a more miserable Christmas. Perhaps next year things will be brighter. For now, though, the days are still cloudy although we know he is at peace.

Keep writing. Your words help yourself and others who follow. Until there's a cure, or at least some kind of test that can provide options, we are all in the same boat.

Sending strength to you, I am no longer

Big Sister

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