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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español. Por favor publique sus preguntas en Español y un intérprete le va responder.
Posts found: 20
Hi. I read your blog and follow you on Instagram. You have a very special gift with your writing. I went back and read every post and sobbed. Everything you are going thru I've been there twice now with CC. Considering my two experiences on dealing with this cancer I should have a lot to offer on how to cope but sadly I don't. My brother was diagnosed in March 2012 with terminal stage 4 CC. The journey was ROUGH!!! He was healthy and only 45!!!!!! He was very very strong. I can only tell you that if I had to do it over again I wouldn't change a thing. We worried, we cried (boy did we cry) we were angry, frustrated and more than anything worried about the future considering he was the rock of the family. And obviously the main financial provider. However one thing we always did was put our faith in God. God didn't let this happen but he will get you thru it. We never stopped believing in a miracle. We didn't receive his healing here in this earth but we have survived. Everything has since fallen into place and although we miss him so much we think back on the wonderful time and we know he knew how much we loved him!!! Feel free to email me at any time if you have questions or just need to vent! We all here know what your feeling!
Much love and prayers. I think of you guys daily!
I arrived at my brothers on Sunday at 9 am. I was able to spend some time with him considering how many family members showed up. I spent the night and got to enjoy him on my own all day Monday. I shared some very precious moments with him. Either way my brother passed at 7:55 that night. His wife and I held his hands when he took his last breath. I really hope he wasn't scared. I know he is in a better place and no longer suffering. He fought for one year and did the best he could.
Thank you to all for your help and prayers!
Love to you all!
To everyone who has posted thank you so much for all of your prayers, support and warm wishes. I truly am overwhelmed by everyone's love and encouragement. I will be leaving Tomorrow morning to my brothers house about two hours away. I will be staying a week to help care for him but most important to spend time with him. I am so nervous because I know it will be really hard to see my big strong brother so weak. I saw him last week and he is no longer the same. He stares off into space a lot and does not speak. I know what the outcome will be but I also know that my brother is going to be free of suffering. I feel guilty to say that I'm looking forward to begin the healing process. Please pray for us while we support my brother thru his final journey. Thanks again and I will keep everyone posted.
It has been some time that I have posted. It has been a roller coaster these past couple of months. Unfortunately they have determined there is nothing left to do for my brother and have sent him on his way. I realize that's a harsh way to put it but that's how it feels. The oncologist will no longer be seeing him and has suggested he be in hospice care. My brother is so sad as well as all of us. They have given us about a month time frame. I'm so sad and I feel so defeated. I can't believe how there isn't hardly any attention to bile duct cancer some people don't even know what it is!!!!! There has to be a way for more awareness. I appreciate everyone's prayers and well wishes. I am so grateful to this site and all the support and comfort it has offered.
Hello... So sorry to hear about your Mom. My Mom passed from it and my brother has it. My brother was also sent to USC which did not end up being his place of treatment. However on the other hand my Mom was treated by Dr Youram Nassir out of Los Angeles. He is absolutely one of the best doctors as far as bile duct and the care and dedication from this doctor is unreal. Again so sorry.
I'm so sorry. Prayers coming to you and Ginger!
I'm so sorry. I lost my Momma to this horrible cancer. She was a single parent and she was my rock, hero and my best friend. I pray that you get comfort knowing she is at peace.
My momma had this horrible cancer in 2007 and now my brother has it. So I know the anger your feeling. I'm so sorry about your mom. I think a second opinion is always wise especially if your Mom has the fight in her
Good luck to you.
Prayers headed your way.
Hi Randi. So sorry you have to be on this sight. My Mom had it and now my brother does. From what a doctor said as USC is that it should be considered a genetic cancer since my Mom had it. Who knows if that is accurate... Sorry wish I could offer more information. Maybe something you can ask a doctor if you have children. I know that's why my brother went to the particular doctor at USC.
Well appointment was successful. They gave him chemo but a lighter dosage of the combo. His tumor markers originally started at 4000 but are at 1000. That's something to be grateful for. Here is the new dilemma. The doctor was still concerned with his blood levels. He ordered a test to look into his antibodies??? I have no idea what that is. Also, if the test comes back with a concern for the doctor he will do a bone marrow biopsy. Since I wasn't at the doctor I don't have the exact name of the disease he thinks it could be. My sister in law said it started with an M and very long. I found something online that could be it but again without knowing for certain it makes it hard. I know many are probably thinking why don't I speak to the doctor or go to appointments?? I absolutely cannot. When my Mom had CC I wasn't as involved because I was a bit younger and my Mom didn't want me to have to deal with it. Well I was with her for two appointments. Each time the news was horrendous and I will never be able to get the look on my Moms face out of my mind. Therefore I am absolutely terrified and I just can't go. Either way after talking to my brother he said Doc told him that there wasn't anything that could be done if the blood is bad.
I wanted to update everyone on the status of the appointment and just throw the new dilemma out there to see if anyone might have some experience with this. This is the only outlet I have. For tonight I will count my blessings and thank God for allowing chemo today. Thanks for all the warm wishes hope everyone has a blessed night!
Happy New Year!!!
Thank you all so much for the advice.
I realize ultimately its up to his oncologist to determine the correct course for my brothers treatment. I just wanted some options that possible my sister in law can ask doctor about.
I did get to see my brother yesterday. Overall he looks good. The fluid in his belly has really gone down, he's a little thinner than normal but that's to be expected.
The biggest issue we have is hopelessness and depression. He stayed in his room a majority of the time I was there. He cooked a gigantic meal for New Year's Day so I think he must feel somewhat ok. It's so frustrating that he doesn't take advantage of the time he has now. When reading the post by Percy I see that he maintains a positive attitude. And I believe that is key. Unfortunately I cannot get my brother on the same page. But I realize that has to come from him. I can only support him and be strong for him.
His appointment is today at 815 am California time. I am saying many prayers that his blood count is high enough for chemo.
Thanks again. I keep everyone in my prayers that are dealing with this!!!
Hello everyone! Hope everyone had a very merry Xmas.. My brother will be going to oncologist this Wednesday. His last visit they were not able to give him chemo due to low blood counts. We are praying that he be allowed to go back on his chemo cycles. Considering this being my second go around with this cancer I am trying to be positive but I'm also being realistic. In case Eddies blood levels are low again is there any oral chemo that they could give him?? Maybe something not as strong as the Gem/Cis cocktail?? I will not be attending appointment but I will be driving out to spend New Year's Day with him. I did tell my sister in law I would ask all of you for some other options that she can discuss with doctor. Any advice or suggestions would be great.
Thank you to all. It's been a roller coaster. Can't believe I'm here again. When my momma was sick we had no idea what CC was. Hopefully this will be the last time we deal with it Merry Christmas to you all!!
Hi everyone. First of all Thank you all for responding and supporting me through this difficult time. Happy holidays to all of you!!! My brother went to his oncologist today. He was supposed to get chemo however his blood counts are too low. I'm so confused. He hasn't had chemo since 11-20. It doesn't make any sense. He's so disappointed which in turn breaks my heart.
I'm so nervous cause I know what could happen without chemo. The doctor prescribed some meds frolic acid and B-12. Does anyone know what this mean?? Does this mean that he won't get chemo anymore ever???
Hi. Don't have many answers. I'm dealing with my brothers treatments as we speak. I lost my Mom to this 5 yrs ago and now my brother has stage 4. I know your pain and all the confusion. Praying for you during this difficult time.
Thank you to so many who replied. What a crazy week it has been. My brother did not get chemo they took him off for a couple of weeks. The fluid is due to the cancer. They are trying to control the fluid with his diet and medication. I got to see him this week. To me he didn't look that great. His belly was really swollen. I of course started to freak out. He lives close to Disneyland. So we were able to spend a few hours with him there. He was really tired so he headed home early. I know that made him really sad. Today is his next appt. after speaking with his wife she didn't say a lot but she did say they were not sure when or if chemo would start again. I am praying that they still treat him with some type of chemo. We are battling hopelessness and depression along with this horrible cancer. Does anyone know if its normal to stop all treatment once the fluid is in the belly. It just sounds crazy that considering the cancer hasn't spread, they will stop all treatments??? I know I'm probably repeating myself I'm so anxious I can't stand it... Anyone with any info please respond.. Thank you all so much!!!
Hi Marion!!!! I get my information from my brother and his wife. I also spoke to his nurse while he was hospitalized. She was such a downer. She kept telling me how bad liver cancer is. I kept saying that I knew what we were up against and yes liver cancer is bad, but, my brothers primary cancer is bile duct located in the liver!!! Not sure if there's a difference but I was so frustrated. She was so bleak. I realize I should go speak to the doctor but I'm such a coward, I won't go because I'm scared. I went once with my Mom not even knowing what to expect and the diagnosis was horrible it scarred me for life! Wish I could be stronger. I feel so alone. I'm so glad people are responding to me I'm able to connect with people who know how I feel.
Love and Peace,
He is on chemo. He has been on cisplatin and gemc...
Thank you so much for responding. Yes my Mom had it. He has gotten a second opinion and they think its a genetic cancer at this point. The fluid was in his belly. They tested it and it did not have an infection. He complaine about the pain to his oncologist about two weeks ago and told him due to what he was describing and where the pain is located that it was possible acid reflex.
I am so helpless. My mom had similar symptoms and died so fast once they started to appear. They did a ct scan at the hospital and they said there had been no changes so I am so confused. I feel so alone. I'm so scared my brother is going to die soon. He will not come to terms with what is happening. It is so frustrating cause I live about two hours from him. I don't know if I have the strength to get thru whatever news we get tomorrow. I'm worried his Oncologist has just given up..
Thanks again for responding! My name is Annie and I have read everyone's posts and I'm so excited I finally started to post, looking for some support!
Hi anyone who will listen. I lost my Mom to this horrible disease 5 yrs ago. Now my 46 yr old brother has it! He was diagnosed in March. He has been in treatment since March. This past week he has had some complications. He is having very bad pain I'm his stomach, his oncologist dismissed it. As the week went on the pain got worse. He finally went to the hospital and they diagnosed him with a slight touch of colitis. In addition he had liquid in his stomach. The hospital told him to follow up with his oncologist. He is supposed to have chemo tomorrow. Does anyone think the fluid is a sign of the end, it was in my moms case. I'm also so scared they will take him off treatment tomorrow. Is that possible?? Please please someone help me. I am so scared. I need advice from anyone who will offer.
Posts found: 20
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