My 73 Year Old Dad, Diagnosed 2 days ago with Advanced CholangioCarcin
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Barb,
Thanks for all your replys and posts regarding my Dad. He is much older than you and doesn’t quite have the fight anymore. We are just taking things one day at a time.
You however have all the reason in the world to go after treatments, after all you have a precious 10 year old little boy who needs his Mommy. I try to put myself in your place, and I admire you for your courage and great attitude towards this disease. I am pulling for you and hope and pray you have great success with the chemo etc.
As for Hospice being a good place to start for my Dad, the hardest part will be explaining it to him. He is a very PROUD Man, and does not want anyone fussing over him etc. We are hoping when the resuts of the liver biopsy come back this week, that we can move on to the next step. The priority being to control his symptoms so we can all enjoy one another.
Will continue to follow your posts and keep up with how things are going for you.
Keep up the Fight and never Give in.
Luv Lisa
Hi again Lisa,
Just wanted to say you’re a woman after my own heart – an animal person like me!! Though I’m in the city so I don’t have horses or anything, and on top of all that I’m allergic to every mammal in the world, I do have one cat now because I was fostering abandoned pets and then couldn’t give them up so I found homes for all of them but my elegant kitty is so skittish that I just couldn’t relocate him again. He won the Whiskas Cat of the Year photo contest in 2001 and I always brag about him and his dashing good looks. My mother and I had a dog together – poodle mix for our allergies – and he just died 4 years ago after 16 wonderful years. We were practically planning a family suicide party when he had to be put down – but I swear he was reincarnated in the form of my 4 year old daughter – smart, bossy, tyrannical. I still miss him so much.
Anyway, I looked at your animal pics and I love them. Good luck with the macaw – that’s a very big responsibility for someone to take on, so I would think it would be difficult to find a suitable person. We had all kinds of birds growing up since we were allergic to everything else, but then my sister and I developed allergies to birds, too. It’s just not fair!
Back to reality for one minute: I’m so sorry to hear that your mother is going through medical issues, too. This must be so tough on both your parents and on you, you must be so stressed out. Keep hoping – things could still look up! Here’s to good results-
JoyceHello Joyce,
Once again I thank you for all your thoughts and kindness. It means more to me than I can say. I guess I too am alot like you, because part of me is still living in denial, because I do not want to lose him. My Dad was always special to me, and I love him more than I could ever tell him. I feel so compelled to tell him everything I am feeling, but I hesitate because I don’t want him to give up or see how upset I am. I try to go on as you said, one day at a time, and just do the normal everyday things.
Hopefully today I will get to spend some time with him outside on the deck since the weather is so nice here, and listen to his stories that I have heard a million and one times. I will treasure those stories always, and they will always bring a smile to my face.
Today’s agenda consists of scrubbing and cleaning a very large bird cage as my Parents are giving up thier Blue and Gold Macaw to a rescue to find a forever home.
They are unable to spend enough time with him now, and he requires that attention daily. I know I have not mentioned before, but my Mom has more health problems than I could list here without it taking up pages and pages, so therefore things are a little more complicated, She is actually recovering herself from surgery that she had right before Dad’s diagnosis. She has had several surgeries over the past year, and none without major complications. Currently a visiting nurse comes out daily to tend to her wounds. I feel so bad for her, because this bird is so special to her, but she made the decision even before Dad’s illness to give him up.We are animal people, however I cannot keep him as I have one of my own along with another talking parrot. I also have 4 horses, 4 goats and 3 dogs, 2 of which are Great Danes (Small Horses). They all keep me busy, and take my mind off of things, which at times is a good thing. My parents also have a yellow lab, so really there are 4 dogs in the house. Some day, I will e-mail you some pics of the clan. You can see some of them on my Myspace page at myspace.com/mantlegirl. There is also a slide show of my Dad building our barn just a couple years ago.
Again, thanks so much for all your support, your Mom was lucky to have had such a caring Daughter.
Lisa
Oh Lisa,
It’s so heartbreaking to hear your story – your dad is a lucky man to have you, as I’m sure he knows – and you’re lucky to have him, too. It’s so hard to prepare for the worst when there is still hope, so maybe you can just live in denial for a few days until the report comes back with results. That’s what I did when my mother had her biopsy – now I remember how horrible it was that they made us wait so long for results – it’s really inhuman! My mother was a nervous wreck, but I just kept thinking, “I don’t know for sure that this is cc yet, so I refuse to think about it or worry.” It was my own defense mechanism, I guess, and dealt with my life one day at a time. Everyone has their own methods that work for them, but that was mine.I’m so sorry his nausea and vomiting can’t be controlled – is he able to get a different nausea med? My mother had several – Kytril, Zofran and another one – and she alternated taking them. She never vomited, just felt queasy. And I had to buy her new clothes too – but BIGGER ones because her stomach was so swollen. I bought her maternity clothes and we got a big laugh out of that – she said she felt like she was having triplets. I hope you and your father get to have some laughter and good times together – I’m not telling you to give up hope! There is always hope, but like you said, you have to be prepared. Keep treasuring every minute with your father – I’m sure I don’t even have to say that – and just hope for the best until you hear what the docs have to say. Big hugs and best wishes go out to you and your dad-
Joyce
Hi Joyce,
Thanks so much for all your follow up posts and concerns for my Dad. The procedure went well, and there were no complications. We unfortunatley did not get a preliminary report and we have to wait 5 days for the results. We were at the hospital from 9:30AM till 4PM when they released him. The look on the technician that spoke to us afterwards, did not look promising. I think his liver is pretty involved, and the size of the lymph nodes is not a good indicator either.
Today he felt up to going to the Flea Market as he usually enjoys doing this on Saturday mornings. I have been going, because its time I can spend with him and I enjy every minute. We stopped and got breakfast, and he actually wanted pancakes.
I thought, Great…….He ate 2 pancakes and a cup of coffee. He was doing good for about an hour afterwards and then Up came the breakfast. So frustrating, we get a little in, and out it comes. The weight lose is incredible and as I said before, I am seeing changes daily.There is hope in my heart, as I can’t believe we are going to lose him. However, my mind keeps telling me to prepare, as it is going to get worse. I Love him so much and there is nothing I can do. My heart breaks more everyday, as I watch this strong man’s health just deteriorating before our eyes.
I just ordered him some pants and shirts as his cloths are falling off of him, even his watch doesn’t stay in place anymore. I just wish we could get the sypmtoms under control, so that he is not in pain and not sick to his stomach all the time.
So once again we wait until sometime next week for a confirmation on the CC diagnosis. However, if it were not that, it is still something not good.
Thanks So Much Joyce for being here for me.
Lisa
Lisa Ann,
I hope you had some positive news or at least some answers to your questions at the biopsy.
We’re all pulling for your dad, we’re here if you need us!
-Joyce
Hi! I am not on here too much- but I just want to say-liver tumors can be fought. I was diagnosed 02/07 with advanced cholangiocarcinoma with a large inoperable tumor on the liver. Well, thanks to Sir-sheres, The tumor is almost completley dead. My last pet scan showed only 2 little dots of activity. I feel great, I have not had any chemo yet, this has been my first line of defense. If you ahve questions, you can vist the yittrium y90 site and see for yourselves.
beckyoh Lisa, I pray that everything goes ok for you and your dad. Yes, I know exactly what you mean about feeling helpless, and the physical changes as well. I just got some pictures from my sister in law and what struck me was that I had that “sick” look, can’t really explain it, but I bet you know. Do whatever you can for your dad’s pain, Hospice is a good place to start.
Lisa Ann wrote:Hi All,Well I finally got some more information on Dad’s condition. He has a 5.5cm tumor in his liver along with numerous others. He also has 5 lymph nodes surrounding his stomach that are 3cm (way to large). He continues to be in pain, some days worse than others, and still will not hardly eat anything.
His biopsy is scheduled for tomorrow morning to confirm it is CC. After we get the results, they want to recheck his lungs and also his brain for any mets. None of this sounds very promising to me, and I am very worried. We will also talk tomorrow about trying something else to control his pain and discomfort, and we were told to possibly contact Hospice and get that started.
I am seeing changes in his physical appearance almost daily now, and it is breaking my heart. I feel so helpless………………I will let everyone no the outcome of tomorrows biopsy, as they hope to at least give us some answers.
You are All in My thoughts as I continue to read and re-read all the posts….
LisaHi All,
Well I finally got some more information on Dad’s condition. He has a 5.5cm tumor in his liver along with numerous others. He also has 5 lymph nodes surrounding his stomach that are 3cm (way to large). He continues to be in pain, some days worse than others, and still will not hardly eat anything.
His biopsy is scheduled for tomorrow morning to confirm it is CC. After we get the results, they want to recheck his lungs and also his brain for any mets. None of this sounds very promising to me, and I am very worried. We will also talk tomorrow about trying something else to control his pain and discomfort, and we were told to possibly contact Hospice and get that started.
I am seeing changes in his physical appearance almost daily now, and it is breaking my heart. I feel so helpless………………I will let everyone no the outcome of tomorrows biopsy, as they hope to at least give us some answers.
You are All in My thoughts as I continue to read and re-read all the posts….
LisaHi Carolann,
I am so sorry to hear that you lost your Mum to this terrible disease at such a young age. I feel selfish, as I have at least had my Dad with me for 20years longer than you had with your Mum. Dad has not had a good weekend as far as not feeling well. He complains about being dizzy all the time, and I have not heard anyone mention this as a symptom here. I sometimes wonder if there is something else going on, or maybe its his blood sugar being low since he is not taking in much nourishment. I am still very frustrated. I am always here to talk if you need a kind ear to listen. I am sure I will need much support as time goes on.
I will let you know how things are going and don’t hesitate to e-mail me if you need to vent.
My Heart Goes Out to You and All Who Have Lost Loved Ones to this Disease.
Love Lisa
hi lisa, just read ur story and it was so touching brought bk memories for me, i lost my mum 52 april this yr after just 8 wks of diagnosis with this awful disease, she too had same symptons the thing is with the disease in most cases its 2 advanced to be treated my mum was stage 4 wen diagnosed. the ppl on here are absolutely fantastic dunt no wot i wud av done without them. i sincerely hope they can control ur dads pain as i watched my mum suffer its terrible and u feel useless, my thoughts r with u n ur family at this time x
Hi Joyce,
A consult with the Radiologist performing the CT guided Liver Biopsy is scheduled for this coming Monday and they are promising to get him scheduled for the biopsy next week also. They also wanted to do a colonoscopy first, but we managed to get the biopsy first.
Thought today was going to be a better day for Dad, he woke up early, and we headed for the Flea Market, which he enjoys. He was feeling okay and in good spirits until we got there and you could just see in his face something was wrong, He wasn’t feeling good. We only walked for an hour or so and headed home. On the ride home the vomiting started, and it was heartbreaking to watch. So needless to say, I got very upset. Dad was up until now, a healthy man, so it is really difficult to watch some disease just take over his life.
I pray every night to just keep him comfortable, and pain free. Today he took his first dose of ZoFron, but no relief as yet. I sure do hope that it gets into his system, and begins to work soon. I think if we could get some of these symptoms under control, things would be a little better.
I thank you for your support and hope, and will let you know the outome of the biopsy.
LisaDear Lisa Ann,
My fingers are crossed that you’ll have promising results from the tests on your father. I think it’s the best thing to wait for the biopsy results — that’s what I insisted they do for my mother, as they also weren’t sure what she had and they made her go through a colonoscopy and other tests before they did a liver biopsy. At least a liver biopsy usually gives a definite diagnosis — so you won’t feel like you’re stumbling in the dark and you’ll finallly know exactly what you’re dealing with. Until then, much hope and support going your way!
-JoyceWell Here it Goes…………The Endoscopy revealed that there is no stomach mass as seen on the Cat Scan and there is also no Esophageal Cancer either. He does have a large Hiatal Hernia and some inflamation in his stomach. The Gastroenterologist also does not beleive that he would have needed a stent placed now, because his bilirubin is only 1.8. His CEA is normal and the CA-19-9 is 62, which he says is not high at all.
So here we go again………He now has a liver biopsy scheduled for next week sometime and we go from there. Only good thing that came out of today, is that they will finally give him something to control the nausea. He prescribed ZoFron and Prilosec which he had already taken in the past.
I still beleive that the Radiologist was correct in his diagnosis of Cholangiocarcinoma. All of his symptoms fit, and he is in pain all the time. No Appetite, vomiting bile and the weight loss. His Family Doctor stated that the results of the CA-19-9 are indicative of a malignancy.So we wait again till next week. His spirits were better today, and he is home and sleeping now. He ate 2 pieces of toast today, a half of a hamburger, coffee, juice and iced tea, which is more than he has eaten in days.
So off to letting the dogs out and the horses out to pasture as we just got home. I will write again later with other things I am sure I will remember from the conversation.
Barb H., Dont worry, I am taking care of myself it is just depressing not knowing things and what is going to happen next. I am just more concerned about my Parents well being right now. We just want to know what is wrong, and we do not want him suffering and in pain.
Take Care,
Lisaoh Lisa,
as much as you need to support your dad, especially when it’s not clear cut as to how to do that, you need support for your own emotions. i don’t know how you will find time, energy, etc. to do that, but i do hope that you will find a way. otherwise, the tremendous stress you are going through will tax your immune system.
your father most likely doesn’t know how to express his fears. perhaps he’s afraid to face the reality of his disease. it took me months and months for the reality to hit me and i’m pretty much an open book when it comes to emotions. you are doing your best to take care of everyone else, please take care of yourself. barb h (since there is another barb on this site, i will start signing as barb h)
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