So glad that I found you!
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Hi Lainy! So glad that I did think to have dad take a list of what what all he is taking ( turmeric, hemp seed etc) to his Dr. appts the other day and all was fine. The hardest part for me is that Dad does not want to know how much time he has. My mom says she is okay too not knowing. I have to admit that it is making me a little crazy. I know that his cancer is aggressive. One question I do have is this….Is inoperable cancer that involves the portal vein, blood vessels and main arteries always considered stage 4 cancer???
I did have mom make an appt with her Dr a few days ago and she is now on an anti-depressant. It of course has not totally kicked in yet, but I am hoping that it will help calm her nerves. My dad really needs her right now!
Dad can not seem to get warm at least a couple times a week. Has anyone experienced this? Even with several layers on and a warm blanket he is still complaining he is cold. Dad has never complained of being cold prior to the cancer.
Thanks so much for all of your responses!
RenaRENA, YES, ONE DAY AT A TIME. Surgery is really the ONLY cure so far for CC. What we hope for while loved ones are on Chemo or etc is for that “other” cure to come through. How does Dad feel about the special diet? Perhaps this makes your brother feel like he is doing something to help although we do recommend that if Dad is taking anything that seems strange to you then you need to ask his ONC if it is OK. We don’t recommend taking anything out of the ordinary that could interfere with what the ONC is doing so we always say, Ask the ONC. Just a suggestion but you might want to have Mom ask the the Doctor for something to just take the edge off. Is Dad in good health otherwise? Did the ONC say anything about to chemo or not or how much time it would buy him? Looking forward to hearing more.
Thanks to everyone who posted! You guys are so great! Dad has gotten a second and third opinion. My parents live in Central Ohio and are traveling to the James Cancer Center in Columbus Ohio for Dad’s care. So far his Dr. Has been great and he is receiving excellent care. They are about an hour and a half from Columbus which is not too bad for travel.
My mom is still struggling with it all and has a really rough week. I am so worried about her. Dad is still contemplating about whether to start chemo or not. I do understand that it is a great deal to process and make that decision. They met again with the oncology Dr this week for a consultation. I will be supportive in whatever decision he makes. My brother on the other hand is completely against chemo and would like him to try the herbal supplement route….which is began three weeks ago. It has for sure been an education!
My heart feels so heavy and my head is spinning. I can not imagine how my mom is feeling right now! I keep telling myself…one day at a time!
Hi Rena,
Welcome to the site. So sorry that you had to find us all and I am sorry to hear what your dad is going through right now. I can so relate to all of what you say as my dads story was most similar to your dad. My dads symptom that first showed was the jaundice. Then loads of tests, told the CC was inoperable as the tumour was also too close to the portal vein.
I know that your head is spinning right now with all of this and having to deal with it all. But please do not give up hope. I was there where you are right now and it is a tough place to be. But please stay strong as your mum and dad will need you to be. I know that it must be so hard living away from your mum and dad right now. But you are not alone in this, we are all here for you. We know how you feel and what you are going through right now. Keep coming back here and know that we care.
Best wishes,
Gavin
Hi Rena,
Your story has really touched my heart. The way you describe your mom & dad reminds me so much of my husband and I. I lost him to CC 4 years ago and believe me, I do know what your mom is feeling and going through. I still miss him so very much.
I have seen so many things change in the past 4 years. There is more known now about CC than there was then and many new treatment options are available. I am hoping your dad will do well with whatever treatment he decides on.
I am in Plymouth, WI about 2 hours from Madison. I am sure it is hard on you too not being nearer to your mom & dad right now.
Please stay in touch and let us know how things are going. My thoughts and prayers are with all of you.
Love & Hugs,
DarlaHi Rena,
Welcome to this site. I am really sorry to hear about your Dad. Your Mom and Dad sound like such a sweet couple. What part of Ohio are they from? Where is your Dad being seen? My daughter is the one with cancer. We are from Ohio and travel to Michigan for her treatment. Your Dad will have to make the decision on chemo. Did his doctor say what he thought about chemo? My daughter chose chemo before it was even offered to her. It is rough, but she is young and strong. I think it would be harder deciding when a person is older. I am just sorry about your whole situation and I am hoping for the best.
Sending hugs and love,
-PamHello Rena,and welcome to our extraordinary family but sorry you had to find us. I am so very sorry about your Dad and my only question is, has he thought about a 2nd opinion? To chemo or not to chemo is a tough one and sometimes takes days to make a decision but it really needs to be his decision. If he has trouble deciding he might ask the ONC what he feels his prognosis would be with and without the chemo. While we don’t really believe in time frames the ONC can give a pretty educated guess. Ours was right on. I know your stress must be great since you are not in the same town and I hope your parents have family where they are. Please keep us updated on Dad and know that you have come to the right place.
Hello big hearted members! Although I am making my first post, a lot of your stories and posts have already helped me a great deal. My dad who I love with all of my heart, was diagnosed with inoperable bile duct cancer about 2 months ago. The first signs of his illness were found during a routine Dr. Exam. A test showed that his gallbladder was functioning at 0% and then his liver enzymes were extremely elevated. While waiting for all of those test results over a weekend …jaundice set in. That’s when the Dr’s began to really understand what was going on and two days later we got the diagnosis of bile duct cancer. It has already been a very scary roller coaster ride for he and my mother. Like so many others, he underwent the procedure to have 2 drain tubes inserted and as a result learned that his cancer is inoperable due to it being wrapped around his portal vein, other arteries and veins. The cancer is also beginning to spread into his liver. He ended up staying in the hospital for 5 days that go around. He is home now and contemplating on whether to try chemo or not. He has been all over the place with this one. He is doing his homework and plans to make up his mind this week. He is weak, loses his voice often, experiencing some pain, having trouble sleeping and scared! I know that he is trying to be strong for my mother….so him!
Dad is 68 years old and he and mom have been together since the 7th grade. They are the cutest couple I know. Until Dad’s recent hospital stay, they had only spent one night apart…amazing I know! Needless to say, my mother is a mess and has already had to get put on an anti-depressant. The hardest part for me is that I live in Wisconsin and they are in Ohio. I have already made a couple trips back home. I truly hate living so far away right now!!! I want to be there for them and spend as much time with dad as I can.
It is amazing how life can change in an instant! I am so grateful that I have found this website. It is a wealth of information, stories and connections. I thank all of you already!
Rena
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