I talked to my dad today.  He is angry...well angry is an understatement.  He doesn't feel well and is on oxaliplatin and 5FU.  He says he goes from bed to the couch and vice versa.  This is his first round of this chemo.  He says if he doesn't feel better he is going to stop.  He says the NP doesn't listen to him, doctors dont do anything, wants to just die....

I am thinking of maybe starting (or suggesting) Hospice to him.  Can they prescribe pain, nausea meds?  Any other ideas?  I think he is not going to last with this.  He is always angry and he has a right.....this cancer is horrible.

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(7 replies, posted in General Discussion)

My family has no history of cancer.  That is why it was such a surprise.  Now my dad smokes...that may play into it somewhat.  He did work at a nuclear power plant...as a guard.  From what I read this is just a mutation that occurrs--not inherited.  I have read that they think that maybe it shows in families because they are exposed to the same thing that caused the cell  mutation but a lot of times it is just a spontaneous occurrence in one person.

How do others deal with maybe getting this cancer?  Are you extremely worried or because the cancer is so rare not really concerned?

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(7 replies, posted in General Discussion)

Does anyone have a mother or father that has had bile duct cancer and then found out that they have bile duct cancer?

If so, how did you find out? 

The Nurse Practitioner for my dad said all I can do is go for a physical and have them check my liver enzymes.

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(5 replies, posted in General Discussion)

Iowagirl-who is your doctor at Mayo?  My father is going to Mayo also.  He does not like the doctors.

Does anyone have any good ideas for the relief of neuopathy (besides stopping oxaliplatin).  My dad is starting this and I want to be able to give him some ideas.

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(4 replies, posted in General Discussion)

Well I talked to the NP.  That was good.  I told her that I was going to take a more active part.  My dad is shy so he would say I feel bloated and not really explain.  I told her ya he is pretty shy and where you or I would be Hey I am so bloated I can't take it....he would say I feel bloated. 

I also told her he is scared and we need to help him.  Overall she said he is doing well with treatment and is doing much better than she thought he would...he was initially diagnosed with Stage IV Bile duct cancer.

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(4 replies, posted in General Discussion)

Ok my dad is in the hospital with recurrent ascites.  I talked to his nurse practitioner at Mayo in Rochester.  She said she was going to visit him today.  She didn't visit!  I am having serious reservations about how good Mayo is at this stuff.  She didn't even call him and she has been on his case from the start.  He never sees his oncologist only this nurse practitioner that works for the oncologist.

I tried to call her.  Being it is 6pm she is gone for the day and the phone just rings!

The Gem/Cis that he was on is no longer working and they are going to switch him to 5 FU.

Please help with some suggestions.

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(1 replies, posted in General Discussion)

My dad is going in to get his port inserted.  He will start Oxaliplatin and 5-FU next week.

He is feeling really tired he says and nothing tastes good anymore.  He says he feels like he has the beginning of the flu every day.  I think he is ready to say no more.

Is there any suggestions for the tiredness or the flu-like feeling?  Any suggestions on food?

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(2 replies, posted in General Discussion)

Well my dad went in for his chemo with a lot of bloating.  They did a CT scan.  They found a spot on his liver and his pancreas and the nodules on his omentum grew.

They now want to do Oxaliplatin and 5 FU as the chemo for a secondary defense.  They said this will work for about 16 wks then there is nothing they can do.

What is the progression signs to look for?  I am quite a distance from my dad and working so I want to be there as much as I can but I need to unfortunately pick and choose.  His cancer is non-operable and he is on pallitive care.  They are concerned because they saw some nodules on his omentum.

It appears he is starting to get bloating.  Is the ascites the first sign of the end?  If so what can I expect...I really want to know how this is going to generally progress.

Ascites...then loss of appetite...then sleeping all of the time....something like that.  This is scary for my dad also as he is living it.  I want to provide as much comfort as I can give.  I was hoping someone could give me a run down of what to expect.

What is the progression signs to look for?  I am quite a distance from my dad and working so I want to be there as much as I can but I need to unfortunately pick and choose.  His cancer is non-operable and he is on pallitive care.  They are concerned because they saw some nodules on his omentum.

It appears he is starting to get bloating.  Is the ascites the first sign of the end?  If so what can I expect...I really want to know how this is going to generally progress.

Ascites...then loss of appetite...then sleeping all of the time....something like that.  This is scary for my dad also as he is living it.  I want to provide as much comfort as I can give.  I was hoping someone could give me a run down of what to expect.

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(2 replies, posted in General Discussion)

My dad is getting some bloating.  I would guess it is fluid build up in his abdomen.  Is this a bad sign?

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(6 replies, posted in General Discussion)

He also has lymph node involvement.  From the start they said he was not a candidate for surgery.  He is going to Mayo so I trust them.

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(6 replies, posted in General Discussion)

This is what I found online:

Periampullary tumours are those that arise within 2 cm of the ampulla of Vater in the duodenum

Tumours that fall under this group includes four main types of tumours 1,4
• pancreatic head / uncinate process tumours - includes pancreatic ductal adenocarcinoma involving head and uncinate process of the pancreas
•lower common bile duct tumours - includes types of cholangiocarcinoma involving the intra-pancreatic distal bile duct
• ampullary tumours - those originating from the ampulla of Vater itself
•periampullary duodenal carcinoma

Although patients with periampullary tumors have similar symptoms at presentation, they exhibit different clinical outcomes according to the origin of these tumours.

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(6 replies, posted in General Discussion)

No I don't know how they made the decision.  My dad is in MN and I am in TX.  I thought my dad said they think it came from the gallbladder or something.  He has lymph node involvement but no other masses.  They said they can't do surgery....he is on palliative care.  Gem/Cis every other week and replacing his stent every 3 months.  He is tolerating it well and after his first 2 months the tumor shrank from 2.5 to 1.7 cm.  Now it is stable at that size for about 5 months.

In reality...the cancer could be pancreatic and invaded the bile duct?  I am just trying to wrap my head around this.

So my dad sent me his results.  It is stating that a periampullary mass decreased from 2.7 cm to 1.8cm.

Is Periampullary Mass considered pancreatic cancer or bile duct cancer?

My dad had a ct scan.  They said it looked stable however they are replacing the stent every 3 months.

They are changing his chemo to 2 weeks on one week off to chemo every other week.  I guess because his veins are getting harder to find.  He is about 7 months out from his diagnosis and is tolerating chemo well.

My question is...do some just stay stable on chemo for years?

My dad is going gem cis and has not had any side effects.  He actually says he feels better after chemo (because they give him steroids).  He has been on this regimen since May 2013 with no side effects.

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(3 replies, posted in General Discussion)

My dad said they will stop chemo for a while to see what the cancer does.  Has anyone done this?

He is having to replace his stent every 3 months and after the stent placement last time, he was in pain and bloated for 3 weeks.

Is having to have the stents replaced so often a bad sign?

My dad is doing 2/1 regimen with Gem/Cis.  He is not able to have surgery.

My advice is to write a list of questions you have and give it to the doctor for him to WRITE the answers along with telling you.  That way you can re-read them. 

Remember...the doctor is working for you.  You can ask him questions whenever you have them and if you have a problem or don't understand ask again.

I have no idea.  My dad smokes and he got it...

He has always had good blood work and never has been sick.  It is so strange.  My dad is 66 and just retired then got the diagnosis.  Life is not fair.

So my dad had to skip chemo due to low blood count.  I guess he missed a week maybe 2...well the stent was blocked.  I heard from another source that my dad talked to the doctor and he feels the stent was encapsulated by the cancer due to the lack of chemo.   Huh?  It can grow that fast and block the stent?  I don't believe it.  It seemed my dads urine turned rust colored...he made an apt they decided to go in and add another stent...the day of surgery his urine was normal.

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(17 replies, posted in General Discussion)

My dad is on gem/cis.  They said he will continue it until it doesn't work anymore.

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(3 replies, posted in General Discussion)

I just found out my dad's metal stent got clogged.  His urine changed color then he began to itch.  They made an apt to replace the stent then it seemed to unclog.  They still put a plastic stent inside the metal one.

Can they just clog and unclog like that?  Is this bad that it is clogging...meaning progression of disease?

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(3 replies, posted in General Discussion)

My dad was diagnosed in April of this year.  His cancer involved lymph nodes so no surgery.

His first CT scan showed shrinkage of the tumors...Yeah.
His second CT (3 weeks ago) showed no change....Yeah.  The doctors assistant said there was a spot on his bladder that they think is not significant.

Well yesterday my dad got a letter saying they scheduled a cystoscopy to look at the spot.  My dad is upset.  He called me.  He wants to talk to the doctor before doing any of this.  I agree.  Evidently the spot was there on his first CT scan also.  My dad is saying if the bile duct cancer is the thing that is going to do him in he would rather not treat the bladder cancer (if that is what it is).  Personally I agree.  He is mad that the doctor hasn't met with him.  I also agree.  I told him to call the doc and tell them he isn't going to do anything until he talks to a doc.  I told him that he can also tell them he wants to wait for his next CT scan to see if it gets bigger or stays the same...his next CT scan is in 3 months.

Has anyone ever had this happen where they just schedule something without a consultation?  I told him he is doing so well when they thought he had a few months they are now looking at everything!  Another thing...since he has lymph node involvement I would think that looking at this other stuff is a mute point.