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Hi all, Thanks so much for your inputs and well wishes. I learn so much from all of you. I did’t know that a high bilirubin count would produce chills. Perhaps that explains the chills dad is having.
Dad continues to weaken. He sometimes gets up and movs to the recliner or goes to the bathroom but more often he lays in bed and mom brings the hospital urine cup for him so that he doesn’t have to get out of bed.
We find that he wakens several times during the night with the urge to urinate and then only urinates very little. He’s still agitated and doesn’t want anyone talking to him or talking around him. It makes it very difficult for the family. We so much want to talk with him and hold his hand and tell him how much we love him but he just doesn’t want to be bothered.
Mom’s given him a couple of ativans today to help with the anxiety but we’re not sure it’s working. He complained of pain a little today and she gave him Tramadol. Since he won’t talk and doesn’t like to be asked questions we can’t really determine if he is in pain. We’re not quite sure how clear his mind is because he refuses to talk. This saddens us so much. I wish so much that we could spend these last days with him loving him and him imparting his wisdom and advice before he dies. I’m so sad that I can’t talk with him because he just doesn’t want to be bothered. He won’t open his eyes long enough for us to see if his eyes are yellow from jaundice.
Hospice came by today but she had a hard time with him too. Hospice delivered a hospital bed today. We’ll see how he does with it tonight. We have a wonderful oncologist who provides his home and cell number to his patients to call him any time we want. So I called Dr B today and told him of dad’s current symptoms. He says that it sounds like the disease is progressing rapidly, particularly now that we’ve stopped all treatments. Dr believes that the liver/bile duct may be obstructed so the stents much not be working. He said that once that starts happening the liver will stop functioning and that he will go into a coma until he passes.
Mom is so sad. They have their 49th wedding anniversary in November. And they’ve been together close to 60 yrs. She so much wishes to be able to talk with him and let them comfort each other. She doesn’t want to remember him so angry because he especially takes it out on her. She has not left his side since Nov 2007 when this all started. She has slept in hospital waiting rooms, ICU, hospital rooms, lobbies you name it but she could not bear to leave him alone afraid that he could get neglected. Now she’s just afraid that he would pass and she not be there.
Sorry this is so long…I feel like a rambling. I just hope that someone out there can learn something from what we’re going through.
God bless you all. This group is such an inspiration.
Lina, I understand the job you’ve taken on to do the research and help your mom. I’m not sure of your mother’s overall condition and what stage cancer she’s at but my father has received excellent treatment from the McKinney Cancer Research Center in McKinney, Texas. There are people in the office who speak spanish. My dad has stage IV cancer and it’s unfortunate that we didn’t find this oncology group when we first discovered this diagnosis. The center is very aggressive in their treatment and they are very up to date on hepiliary cancer protocols. I would recommend them and if I had cancer this is the center I would want to be treated at.
God BlessJean, I can’t imagine how scared you must feel. I wish I had the right words to help. I will pray for peace, serenity and healing for you tonight
Irene, I pray that your surgeons are successful in removing you cancer and that you recover quickly. I pray that people come into your life that will help you through this difficult time My heart breaks for you. There is a wonderful book I just picked up called “Anti-cancer A new way of Life” I think it’s worth reading.
Jeff, good luck to you. My dad has also been experiencing the jerking and he hand shakes. He’s still having a tough go at it. I’m curious why did you decide not to do the Tarceva? You think radiation works better and takes the pain away? Dad is on Tarceva and had been on oxyplatin up until he got pneumonia a week ago. He’s still fighting the pneumonia, weak and depressed.
So sorry to hear your news. My dad has cc and was diagnosed in Nov 07. He was 67 when he was diagnosed. It’s a rough road with lots of questions and lots of decisions to make. I highly recomment Caring Bridge as Patty suggests above. It’s a great tool. There’s lots of good information on this website so read and ask.
Take deep breaths and allow time for your thoughts.
Suzanne, I hope for the very best for you. My father was not a candidate for surgery either. He was diagnosed in 11/07 and he’s strill trying different protocols. There are a lot of things to try out there. Most important is to find the right oncologist for you. And remember you can get more than one opinion.
Keep coming back and you will learn a lot.
Hello Jenn, Welcome to this site. You are so young to have this awful disease. I pray for strength and guidance for you and your family. Have you had any treatment after surgery? Why are they starting you on an experimental protocol?
God Bless
There are certainly a lot more things to try. Don’t give up hope. Since you didn’t say how your dad is feeling it’s hard to offer suggestions. I can tell you that my dad was dx 11/07 and was not a candidate for surgery. He’s done 5-fu & radiation and gemzar. He’s recently started Tarceva and oxyplatin. Prior to this last protocal he was sent home to die. He was in the hospital and the CT scan showed that the cancer was very aggressive and had met to lungs. We moved my parents closer to family and founda new oncologist. My dad was feeling very bad…couldn’t walk, could barely talk because he would get out of breath and his stomach was very distended. He was also very depressed and did nothing all day but sleep or lay there with his eyes closed. He just had a CT scan after undergoing this new protocol and the cancer had not spread any more. He looks 100% better than when they sent him home to die. He’s not feeling well but he’s so much better. He can walk a little and occasionally watches TV and can carry on a conversation. He’s even gone out to eat.
The current oncologist has been very frank with us. He says the odds are against us but continuing treatment is not going to make him feel any worse than he already feels. The hope is that it will shrink the cancer and stop it from spreading.
So don’t give up hope. My prayers are with you and your family. You came to the right place to get support and advice.
Andy, Check out this article and ask your doctor if this is a potential for your mother. This was just published today. I’m going to show it to my dad’s dr to see what he says.
Radiofrequency Ablation for Unresectable Tumors of the Liver
So sorry for your loss. Thak goodness you have family there to support each other. This is a good place to continue connecting with people who have and are experiencing the same things you have dealt with. God bless
rachLisa, Just know that you are in my prayers. I pray that you get strength to get through this difficult time. God Bless
rachDianne, I just want to echo all the sentiments and love going your way. May God give you strength to get through this trying time.
Rachandyuk,
My dad was diagnosed in Nov 07. Surgery was not an option. He had two stents put in to open up the bile ducts as he was very jaundiced and itching alot. Dad started a treatment of 5FU with radiation…6-7 weeks. There was a little growth with suspicion that it had spread to lungs. He then started 6 wks of Gemzar. The tumors got worse. By this time it was July 08. He was told that he had 4 weeks left to live. Then we found a new oncologist who suggested treatment with Tarceva and oxyplatin. The new oncologist said that had he been involved he would have started dad with this protocol from the very beginning. Dad has been 4 weeks on Tarceva and two rounds of oxyplatin. His last CT scan showed no change which is a good sign. Before the cancer had been quickly spreading. We’re hopeful that this new treatment will help and control or shrink the cancer.We were told that there is no cure for choloangiocarinoma. It’s a terrible disease. You’ve come to the right place to get information. This site has an abundance of information from people with large hearts who are willing to share.
Good luck and God Bless
