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Cancer: Pancreatic & Liver Message Board
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Old 03-23-2011, 08:57 AM   #1
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New and needing support and advice

Greetings,

I'm new to the boards after having a whirlwind couple of months. It all started on Sunday, January 16th of this year. Got a call from my mom saying that she had stomach and back pain and would we (husband and I) come and take her to the ER to get checked out. My mom is 82 and lives independently in an apartment about an hour away....but we flew down there to take her to the doctor that day.

After a battery of tests, the doctor told us that there was a mass on her lung and they didn't want to perform a CT scan with contrast because she had low liver and kidney function, instead recommending an immediate biopsy. We asked for a referral to our clinic/hospital and took her home with us.

Fast forward to today, March 23, 2011. My mother is now living with me, her only child and caregiver, and my husband. After many tests and biopsies, she has been diagnosed with both primary lung and primary pancreatic cancer. Both cancers are inoperable and she has chosen quality versus quantity of life, opting out of any treatment.

I am anticipating that she doesn't have long. Her doctor says that the pancreatic cancer will take her before the lung. She may have six months, she may have up to a year. I don't understand the timetable and sure wish I knew how fast this will progress. To clarify she has good days where we can get out and about together but more frequently she looks to have jaundice (although dr hasn't said that), she's had more frequent episodes of nausea, abdominal tenderness, has certain episodes of vomiting with back pain (seems to come in cycles) and complains of chronic right shoulder pain. The doctor told her the more she can eat the longer she'll live......she is eating but it goes right through her. She's lost about 25 pounds since September. She's taking immodium for bloating & diarrhea and has a prescription for vicodin, which she's only taken twice.

It amazes me that in looking back at her medical records, she went to the doctor twice last summer complaining of diarrhea and stomach issues and was diagnosed in October with sudden onset diabetes....all symptoms of pancreatic cancer

Did I mention that my husband and I just got off the caregiver express? We lost my mother in law a mere year and a half ago to bronchial cancer. We took care of her the entire time as well.

So I guess I'm looking for support and stories from the rest of you here.....what can I expect to encounter in caring for my mom with her pancreatic cancer and tips on what to expect next? How can I be most helpful? I'm scared of how bad it will be because I understand it's so painful. Her sister is coming in late May to visit her but I'm worried that may be to late for them to enjoy each others company.

Thanks for your support

 
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Old 03-23-2011, 10:07 AM   #2
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Re: New and needing support and advice

I'm new to the boards as well. I can tell you that my dad has pancreatic cancer. He has had two stents placed...first a small plastic one and then a larger metal one in January. This relieved his jaundice and nausea. He also started hospice in January and they put him on Decadron (steroid) which improved his energy and appetite significantly. He spent all his time telling us how much he loved us, reliving past memories etc. He didn't complain of pain until just three weeks ago when he had his first big pain episode. He was taking 15 of morphine every 4 hours for a few days and that seemed to manage it. He went off the morphine, perked back up, was getting out and about, driving himself, but a week later was showing significant weakness. Then, we had a more significant pain episode a week ago and it took 30 of morphine every hour for 8 hours before we got it under control. My dad is a fighter and rarely complains of anything so we're never sure if he's telling the truth about his pain - he has a thing about caring for us and not having things the other way around. He refuses assistance even when he needs it. He finally agreed to a walker and a hospital bed which was moved in last week. He's refusing to use his walker now and he has moments of confusion, anger, memory lapses and a little bit of paranoia. He is not happy with his car keys being taken away. It seems like the mental changes are fairly recent and related to his last pain episode. He still eats....maybe a half a can of soup for dinner, and a snickers bar for lunch with a side of prune juice for the constipation. He drinks a little still...a bottle of water per day or so. He hasn't had any pain meds for a few days again....convinced that he should be able to drive if he's not on them. His feet and ankles are swollen, he's weak and he's lost weight.

It is really tough. The mental changes make it particularly so. I'm trying to keep it together as primary caregiver since my father has been my mother's caregiver and she cannot live independently due to complications of diabetes, hypertension, thyroid and kidney problems. So...I have my hands full with two parents who need help at the same time and live independently, though neither are capable of that at this point.

I hope at least knowing you're not alone helps. I've been lurking and reading messages here for awhile and it helps me.

 
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Old 03-23-2011, 10:27 AM   #3
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Re: New and needing support and advice

Wow, both parents ill....I'm so sorry to hear that, one being ill at a time is more than enough. Here's a hug and thanks for responding to me.

So how long has it been since your dad was diagnosed and how long before a stint was placed? I'm having a hard time judging progression with my mom and her doctor doesn't say much about progression.

I think it's really hard for our parents to be dependent on us. My mom has lived alone for so long and done just fine....now she's been living with us for a couple of months now and is bound and determined that she'll drive herself down to her hometown (about an hour away) to celebrate her birthday with friends. I worry but don't want to stop her...she's made a few side comments hinting that I may be too controlling. I don't want to be, I just worry about her driving and having some sort of pain attack (not to mention her hearing has gotten worse since she's been ill and/or her focus). She's been a little snappy or over anxious of late too. I am trying not to take it personally because I know all of this has got to be too much for her. I'm sure getting diagnosed with two cancers, having all sorts of tests, giving up her residence, and moving in with her kid has had an effect on her mental state for sure.

 
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Old 03-23-2011, 10:45 AM   #4
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Re: New and needing support and advice

Dad was actually diagnosed almost two years ago in July. He had kidney stones and when they did a CT, they found a mass in the pancreas which they biopsied endoscopically through his stomach. He's has a-fib and has been on digoxin for decades, and that influenced his decision not to do chemo or surgery and just try to get as much quality time as he could before he became symptomatic.

He became symptomatic in mid-December when he developed jaundice for the first time. Just after Christmas we had a scare with a bp of 60/40, so he stoppped taking his bp meds. They placed his first stent that week...the second two weeks later.

No one likes to comment on time. Doctors and hospice always tell you that the disease is progressing, but will tell you that every patient is different. I'm sure they have an opinion, but they just don't share it because they can, so often, be wrong and I think they try to give you as much hope as they can. It makes it tough when you try to keep siblings out of state informed so they know when to come back. My brother came out from WI over the weekend and flew back this am.

Watch the driving thing. We had the exact same concerns with dad and I didn't fully realize the extent of his mental status change until he was talking to the hospice counselor yesterday. I think his mental status changes may be due to changes in his blood chemistry as a result of the cancer. Loss of independence is huge, parental safety is very important, but public safety has to be a concern too!

It's not easy at all and it's a tough thing for parents to transition to being cared for. There are times when I feel like the lightening rod! But, truly, they do the very best they can at any given time and I know dad struggles with fear of what's coming too. Your mom sounds like she's fighting to hang on just like my dad. They actually sound like they are in very similar places in the disease.

 
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