What Happens Next

My father was diagnosed with PC on Jan 2 2008.  He has mets to the liver and just had a ERCP with stenting done 2 days ago.  He has had worse pain ever since.  They said they had a heck of a time getting it in, so I expect the pain he is having is normal.  He is jaundice.  He has a horrible rash from the Tarceva that he is taking.  We are supposed to leave in 5 days for a trip that he planned for our family (a cruise).  I am very nervous and anxious about the trip, since he isn't feeling well.  He really wants to go, knowing that this very well may be the last chance to do it.  No one has explained to us how this horrible thing works.  Can anyone tell me what to expect as far as deterioration of his health?  How do we know when it is near the end?  I am so incredibly close with my father, and this is breaking my heart beyond any explanation. I don't know how to ask some of the questions that I want to ask.  Any advice/support someone could give me would greatly be appreciated. 

I think the first thing I need to say is every situation is different and there is no clear cut answer on how long.  My family is in the same boat.  My father was diagnosed one year ago stage 4 with mets to liver.  In the last couple of weeks he has just become jaundice and a CT scan revealed mets to lymph nodes and the back too. They have not found a blockage and he will have no stent right now.  We too are in a panic wondering if this is the end and feel like the onc (who is very good) but is a poor comunicator in terms of what to expect.  My father is in a lot of pain and we are getting him a celiac pain block this Monday.  It is an awful disease and is hard to say if someone is close to the end of this.  I had one person tell me his grandmother died 3 days after becoming jaundice, and another told me her mother lived two years jaundice.   My feeling now is make the most with the time you do have no matter how long it may be.  None of us are promised tomorrow whether we have cancer or not.  Live life now to the fullest!   I hope this helps in a small way, if you need any other information, I will try my best to give it.  My prayers are with your family. 

I'll agree - everyone is different.  My mom went home to heaven on 2/16/08 after being told 5/1/07 that she had less than 30 days and then in November 2007 that she had "six months to a year" as of 5/1/07.  I feel it's the doctor's 'best guess-timate' sometimes.
My advice as a daughter?  Embrace the time that you have.  Take plenty of photographs, video as well if you can, and do what your dad wants to do.  He'll know his limits.  Make him as comfortable as possible - work with his doctor to get Hospice involved.  We did and they made a WORLD of difference as they are oncall 24/7 and have a direct line to your dad's doctors that your dad and/or you don't.  They helped mom with pain management and kept her comfortable and as pain free as they could. 
Many blessings to you all....and if you need to vent or have someone listen - just message me.
Jo's daughter,
Janice

My mother died 12/23/07 after an 8 month battle of pc.  she had an unsuccessful whipple. I took her to Vegas in August after she was hospitalized from may to end of july (in and out about 55 days).  She was only 63.  Taking her on the trip was the best thing we could have done for her.  As she had a great time, She had drainage bags and some other things that we had to be attentive to, medically speaking.  She was herself, she tried to eat and did and the trip rejuvinated her.  It was so wonderful to see her laugh again.  Then she slowly started to go down hill  She had lost a lot of weight and then the pain became worse and worse.  Hospice increased her meds and she was pretty much bed ridden as she slept almost all day.  She said she had had enough and quit eating at the end of November/beginning of December.  She did not eat anything for 21 days and passed on 12/23/07.

If you dad says he feels up to it.  TAKE HIM.  Make sure you have plenty of meds, let the doctor on the ship know and have a good time.  Because this is an awful disease with no hope.  My mother weighed 150 lbs and when she died she was about 65 lbs.  She has been gone for 80 days today.  I miss her sooo much.  Its hard to believe i have not seen her in 80 days, spoke with her, touched her, and have not laughed with her in 80 days.  Good luck to you and your family and i will keep your dad in my prayers 

 

I was glad to see your message regarding a trip. My daughters doctor said that she wouldn't have any more treatments and that she would have a cat-scan in a couple of months. He suggested that my daughter and her husband go on a trip but I've been worried about her as she is so weak and is on supplemental food because she will not eat ANYTHING! But, maybe it would be good for her to go even if she has to take the supplemental food along. What do you think? Any suggestions.

Yes everyone is different.  My beautiful Mother passed away March 7th, 2008.  We buried her yesterday!

She was diagnosed in Sept. with mets to the liver.  There were two spots (nickel size) on her liver in Sept.  Seven days before she died she had a stent put in and the doctor showed me her liver on the computer and it was just enormous.  The stent worked for one day.  That evening her bladder would not drain so hospice put a catheter in and drained her bladder.  They left it in and it never drained again so her kidneys stopped producing.  Her bladder drained Sunday morning and she died on Friday morning.  7 wks ago her only symptom was pain.  She was going to go to Texas for a month but didn't get to go.  She didn't eat much at all the last 6 wks.  Lots of meds and slept alot.  She had quite abit of confusion also and started having panic attacks which she had never ever had before in her life.  When she laid on her right side you could feel and see her liver sticking out..you could feel the outline of it.  She could walk around until the last 2 or 3 days.  She started having trouble swallowing food the last 6 wks...I think because the meds made her mouth so dry.  The last several days she couldn't swallow pills so we gave her liquid meds. 

 I know this is detailed...I asked the same question you did weeks ago and did not get much info...I wanted to know just like you do.  But keep in mind everyone cancer grows differently so symptoms can be different.  This beast grows quickly so enjoy every second.  Don't put nothing off.  Mom was basically fine one day on the phone and I drove 30 min. to her house and when I got there she wasn't fine ever again and went down hill from there.  I still can't believe it.

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In response to your question about whether or not to take your dad on vacation, if he is at all well enough to do it, you must go. My husband was diagnosed with stage 3 ampullary cancer (I know this is the pancreatic board, but there's not much activity on the ampullary one!) on December 13, 2007. When I mentioned to the surgeon that we had tickets to visit our son and grandchildren (two adorable baby girls) in Rapid City over Christmas, he looked me straight in the eye and said, "I think you should go." So we did. And, in spite of him being tired, we had a wonderful time and those babies sure do love their grandpa! He had the Whipple on January 15th and chemo started March 14. We got a grandson on February 21 and luckily he lives only four hours away so we have been able to see him and his parents. Now we pray that my husband lives long enough to see all his grandbabies again. Please do whatever activities, trip, etc, your dad can handle. Make all the memories you can right now.

The Pancreatic Cancer Action Network website, www.pancan.org is a helpful site.  My Mother passed away in Nov. 07 after a 4 month battle with PC.  I have since become involved in the local affiliate and at my Mother's request have become involved in raising funds for research and awareness of  PC.  Spend as much time as you can with your Dad.  I am so glad that I was with my Mom her last few days.  Hospice was wonderful, not only for my Mom but for the emotional support for the whole family.