Topic: My dad has this...

...this cholangiocarcinoma.
In December of 07, they gave him 6 months to 2 years. He has been doing chemo since then.
They just told him the tumor on his liver has grown one centimeter. They have now started him on a new drug, erbitrux. His doc says if this doesnt show signs of improvement, they will send him to Seattle to the big cnacer hospital. He is going to Madigan right now, military.

So....is there any chance for him to live longer? Any chance at all? Has anyone been this far gone and come back?

He is different also....making some bad choices, just in life. Like letting other people write out checks in stores, etc cuz he says he cant see.

This has wreaked havoc on my family, mom especially.

Any advice??????
Thanks....
Wendy

Re: My dad has this...

Hi Wendy,  You are having a difficult time with out a doubt.  How large is your Dad's tumor at present and location? Has it spread to any other areas of his body?  I'm not really sure what you are asking in reference to his behavoir and making bad choices?  If you feel he is dibilated to the point that he is unable to take care of himself due to phsycological issues and feel that his actions could create harm to himself or others, then I would be seeking legal assistance or call your local crisis hotline and see what can be done to have him committed for evaluation.  If he can't take care of his finances properly, then again a court order needs to be obtained and a designated representative payee can be appointed.  It sounds as though he was once in the military? How long for? I don't really know what else to say to you because you gave no specifics.  If he is mentally not handling things and has other issues such as abuse to anyone or drinking and driving or whatever, I'm talking in the blind.  That bottom line is get him the help he needs.  If that means involuntary committment to a hospital.  When you say he has wreaked havoc on your family and especially your Mom. That is pretty strong language and someone needs to stand up and take action.  Cancer or not, Social Services /Mental Health Association needs to be brought in to the picture if you feel he is out of control and again , if he has stated or his action are a clear signal that he could do harm to himself or others!  Wendy ,again I'm just talking in the dark, You know what is going on ,you are there.  Dad or not ,cancer or not, He can't be helped unless someone applies some tough love.  If I'm way off base, then please do clarify with some specifics, and maybe I can be a little clearer of what you may be able to do to help.  As far as, could he live longer all depends how far advance his cancer is.  I've been going on for 9 1/2 years which is hard to believe.  Everyone is different and respond different to treatments.  Wish you the best in getting your Dad the right help he needs, especially for your Mom's sake.  For some reason ,I'm feeling like he is not handling things well, and is like a bull in a china shop if things are done his way.  Please correct me if I'm wrong!  In any case he definitely needs help tough or soft.

God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: My dad has this...

The tumor on his liver is 8 centimeters. There are spots on his lungs and kidneys.
They gave him 6 months to 2 years this past December.
He went for his 'new' chemo today and they couldnt do it cuz his blood count was low and they said his kidneys are in failure.

He's not abusing anyone or anything.
His bad decision making is letting other people write his checks when he goes to pay for things.
He is not mental.

The chemo has screwed with his eyes so his driving skills have worsened.

He was in the marines for 7 years. He was honorably discharged when he broke his knee playing football for them.

I dont know what I was looking for when I posted here.
I have no frigging clue...hope maybe......

Re: My dad has this...

Hi Wendy.  When my dad was diagnosed with CC this past January, my whole family went into shock.  Who the heck had ever heard of cc, and why are the doctors so pessimistic?    When I first came across this website, I was desperate to talk with someone, anyone who understood what our family...specifically dad...was facing.   And I found all the things I hoped and wished and prayed for.  Certainly, this site can't provide a cure (yet)...but I will tell you I found the best advice and the greatest cyberhugs one could ever hope for.   I was able to better advocate for Dad because of the wisdom I found here...it may or may not have applied for Dad's case, but I became educated, therefore, empowered to act.  When Dad began to decline, I turned to this site for comfort, and received it.  And when Dad died 3 weeks ago, I felt hugged and loved through it all.  I guess thats why I continue to turn to this website...I feel I have gone through so much with my 'cc family' I can't imagine not checking in at least daily.  This is a frightening time for you and your family.  You do have your hands full, but the people you will get to know here are wonderful, and so very helpful. 
I wish you and your family peace and strength. 
Jolene

"Faith in something greater than ourselves enables us to do what we have said we'll do, to press forward when we are tired or hurt or afraid, to keep going when the challenge seems overwhelming and the course is entirely uncertain."     ~g. b. hinckley

Re: My dad has this...

...only 3 weeks ago? How long from when he was diagnosed till he passed? I know this is coming for me....

Re: My dad has this...

Wendy,

As for whether or not there is any chance for your Dad to beat this rap, at least for a while, I think that if your Dad is still going to the store alone he is still in pretty good shape and he should definitely look into other options. I don't really know enough about the options because my Mom had other health problems and was not a candidate for a whole lot of treatment besides surgery but I encourage you to look at other people's experiences with different treatments on this board and also the Medical Updates on the website (look under the Cholangiocarcinoma tab). I have posted before that I am sorry I did not find out about photodynamic therapy (PDT) until it was too late for my Mom, see the article here:

http://www.eurekalert.org/pub_releases/ … 041508.php

Also, how old is your father? I think age is a big factor in terms of fighting this beast. Does he have any other health problems?

As for the rest of your post, I do have some advice. When I first found out what type of cancer my Mom had, I started doing research because I am a librarian but I stopped after about 20 minutes because I couldn't handle what I was reading. I eventually went back to researching but there is a large learning curve with this cancer and everything happened so fast (she came home from the hospital after surgery and immediately had complications with her tube) that we had a hard time getting our bearings to know what we were up against.

In the back of my mind I kept thinking about how much time she might have and how to make the most of it. My mom had 7 kids and made a million breakfasts for us over the years and when I moved in with her she still tried to make breakfast but she was too weak and I think that when she realized she couldn't even scramble and cook up an egg, she knew what she was up against. I started making breakfast and made her my famous crepes one day and she loved them and I was really grateful I could do something for her that she could get excited about. I guess my point is, no doctor or person on this board can tell you with accuracy how much time your dad has, one infection can cause a major decline, but you can decide what you do with the time he gets and that little moments and pleasures are just as important as big ones. There happened to be a family picnic planned so my Mom got to see a bunch of cousins she might not have seen otherwise so you might want to plan something like that if there are people he has not seen in a while.

In the end, we lost my mom about 8 months after her diagnosis and feel very lucky to have gotten that much time, since at about 3 months she was doing too poorly for chemo/radiation and seemed to be rapidly declining. We also got a lot of quality time in the last 4 months, as she deteriorated she had more complications but we had become a little more savvy about her condition and what to expect and then with hospice she wasn't having to run to the emergency room when she got a fever.

As for your Dad letting strangers write out his checks, all of your family members need to talk to him about perhaps taking over some responsibilities. My Mom was really weak after surgery and had to stay at a rehabilitation facility for 6 weeks and I took care of her mail, etc., but when she came home she wanted to take care of it again and at first I let her but I could see she wasn't keeping up with it so I asked her if paying bills was how she wanted to be spending her last months and she agreed it was not and I took over those duties again. It is also helpful to take over financial duties now when he is coherent, as you will be able to ask him questions.

Chin up,

Patty

7 (edited by JeffG Tue, 19 Aug 2008 21:18:22)

Re: My dad has this...

Hi Wendy , Whew, I'm glad you verified some things.  I'm so sorry to hear how advanced your Dad is.  I have tumor in liver and both lungs and mets to esophgus area adjacent to the heart. Also it appears to be attacking my ribs and I have fluid retention around my right lung.  I have stopped chemo for three months as it was dragging me down, my immune system was worn out.  Now saying all that, It's been 9 1/2 year since I had my liver resection and gallbladder removed.  I've tried pratically all chemo regimens withinthe last three years and a couple bouts of radiation.  Wendy, I always push for hope but I'm not going to sugar coat anything.  It appears your Dad's cancer has advanced fairly aggresively and the fact that his kidneys are involved, the doctors estimate could be fairly accurate.  Also , there is a correlation between the kidneys and trouble seeing.  I might suggest going to walmart and try on a few pairs of those generic different strength eye glasses.  It may just help with his eye sight. Wendy, when these tumors grow they have a tendency to create pressure on other nerves that can interfere with eye sight from dizzy spells to hard to focus.  I'm sure your dad is depressed due to what the doctors has told him and he is trying to be strong and independent as long as he can, but the truth is he needs some support now.  Maybe someone can say, Hey Dad can I go to the store with you or something like that.  Then you can keep an eye on his driving and write the checks for him.  Wendy it is so emotional wtaching someone you love go from strong and vigarous to weak and needing help.  I myself have to start letting go of some things and stop being so stubborn.  I had to visit the ER this weekend because of bad painin chest and side.  I thought my right lung had collasped.  It turned out to be that I over did it by weed wacking and mowing the lawn and the tumors pressing against my nerves created severe muscle spasms, in turn pain.  The doctor said Ineed to give up mowing can you believe that?  He said one wrong jolt could break my ribs.  Wendy , I don't mean to say all this to frighten you, but just confirm your gut feelings.  His attitude and love for life can take him quite the distance, but from my own personal experience, this relentless disease takes a humungous toll on our bodies.  I continue to maintain a positive attitude and have hope.  I'm even trying some old supplements that I had tried previously and also participating in an EFT study to help me deal with the pain and emotional sid eof things.  I'm not in denial of my situation, just believe in hope and prayers, even if I can't go tre full distance, I'm going to keep taking it to the limit as many times as I can.  Please forgive me for overreacting on earlier post, but I use to advocate for women with children who had abusive spouses. I just felt and overwhelming distress in your words, and rightfully so.  Wendy, your not in it alone girl and certainly feel free to vent and ask questions no matter how delicate or strange.  We may be able to provide some suggestions to help you in some way.  Watch out for your own health as well.  Share your feelings with someone if you can.  This is with out a doubt a different kind of tough love and emotional release is definitely a plus.  Wendy, a prayer and many thoughts are flowing your way.  May God give your Dad , You and your family the strenght.  Has your Dad seen any positive effects of chemo yet?  Only the best for you all.

God Bless Your Worried Heart,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: My dad has this...

...yes, the chemo has helped somewhat.  I guess he wouldnt have made it this far if he wasnt getting it.
Tomorrow he gets an ultrasound on his kidneys...my mom told me they were gonna discuss not continuing the chemo.

My dad will be 70 in October of this year.
His mom died of liver cancer.

I've been having trouble elaborating on things here cuz I end up bawling and I cant friggin see to type.

In May, on Mothers Day of 07, my mom informed us she had bladder cancer.
She did the bcg treatments and they didnt work. She went under an intense 10 hour operation to remove her bladder, build her a new one out of intestine and make her a stoma in her side.
During her month long recovery in the hospital is when my dad started having stomach pains.
I just thought it was ulcers.
It was the cancer...and it was already advanced.
The docs out at Madigan told him the same thing the docs at a non-military hospital told him....6 months to 2 years.

So both my parents in the same year...???? Are you kidding me?????

My mom seems to be on the mend. All of her scans have been coming out clean and she just got her port removed.

My dad is just going downhill so fast....he wants a new truck....he wants a new truck to drive around during these last days.
Well, my mom will have no income when he is gone...or not much of one.
So what is she s'posed to do with a big ol' truck payment..???  But how do we tell him no, you cant get one???

There is just so much happening right now.
He's thinking about now and she is thinking of the future.....

I will say their faith in God is strong...

I dunno....I almost just want this to be all over with....but I dont wanna lose my dad...at least not like this......

Re: My dad has this...

Hey Wendy...  My dad (71 years young yet still full of life) was getting the crud knocked out of him because of the chemo.  He was miserable and very vulnerable.  He wasn't on hospice...he didn't feel he needed it yet.  And, bless his heart, tried to do his normal day to day routine of all the things he enjoyed.  Dad lived in my home for the last 3 months while he was receiving treatment.  My mom (diagnosed with Parkinson's and not doing well herself) was not in a position to help dad.  We brought him to the hospital the week before he died because his fever spiked and he was acting really strange.  Came to find out he had an infection that his body couldn't beat, but the doctors got it under control.  Unfortunately, his kidneys began to fail, and they couldn't 'jumpstart' them to work properly.  He died before I could bring him home.  We had him for 6 months...he was given 4-6mo by the oncologist, but dad felt he could last longer through sheer will.  And I really think he could've, too, he was such an optimist.  It was the infection, I believe, that sideswiped us.  And even though we knew the outcome...it really happened so quickly.  I'm still in shock. 
On a different note:  my dad's older brother died today from prostate cancer.  My dad would call out for his brother when he woke up anxious.  When I asked him why he called for his bro, dad just shrugged and said when they were kids, they did lots together.  Nice to know the brothers are together again...3 weeks apart.
Try to enjoy this time with your family, even through all the hardtimes.  My dad began to get his affairs in order, because my mom isn't really able to make the best decisions...just the opposite of what you are going through.  Dad was the levelheaded one...mom, not so much, God love her.  But she would listen to dad.  Because of dad, I have their power of attorneys, and am their health care agent for the health care directive.  Dad also made sure I became my mentally/physically disabled brother's guardian and his rep/payee.  Unfortunately, we didn't have enough time to get the house, property etc in my name...but hopefully being my mom's POA I can get the stuff done the way dad wanted...but I digress.  Does your dad listen to your mom?  Perhaps you and your mom can convince your dad to get the legalities set up.  Also, driving...would his doctor be able to suggest to your dad that driving may not be an option at this time?  I was fortunate...dad gave up driving on his own...not his license, mind you...he still liked to think he could if he wanted to, but he knew better and it was one worry I didn't have to manage on my own.  Income:  dad and I stopped by social security with a what-if scenario and we learned what my mom and disabled brother would have available to them if something were to happen to dad.  So we had a sort-of idea what we could count on.   Final experiences/expenses:  you may want to, if you are able to, keep a mental note on what to expect when the inevitable happens.  I contacted the funeral home, insurances etc for a dry run...mostly because I had to, my mom is not able to do these independently, even though for her dignity I try to let her do most everything on her own-I just watch over her-but I had an idea what to expect...I didn't want to manage all of this on top of losing my beloved dad.  The old Girl Scout 'be prepared' thing going on.  We are no-way near finished with the finalities, but I think we are ok.
You are so right...there is so much going on, and it sounds like you are the strong one for your family.  By the way, is your dad on hospice?  They have assistance for the family:  homecare, volunteers, counseling etc.  They may be a source/resource for help for your family.
Be brave, be strong, be positive; I'm sending you all of my good thoughts and wishes.
Jolene

"Faith in something greater than ourselves enables us to do what we have said we'll do, to press forward when we are tired or hurt or afraid, to keep going when the challenge seems overwhelming and the course is entirely uncertain."     ~g. b. hinckley

Re: My dad has this...

Hi Wendy,  I just wanyed to send you a great big hug this morning.  You hav e had your share of caregiving for sure.  Bless your big heart girl and if you every need a shoulder to cry on, just hit the e-mail below my name on the side bar.  Sorry I wanted a new truck as well, but not.  I decided my wife needed a new vehicle after and If I go.  So she has it  and I 'm going to hang around until it is payed for, hopefully. Talk soon , have to run my son to the bus depot.
God Bless.
Jeff G.

Take it to the Limit,One More Time! (Eagles)