I just wanted to thank everyone. After 1 year battling this cancer my dear sweet husband died last night. I wish all of you continued success in fighting and conquering this cancer.
Well it has been since October since I last posted. My husband has completed chemo. Lost 80 plus lbs, numerous blood transfusions, etc. Now that's all the medical interventions! Just had repeat ct scan this week and had "slight" increase size in liver tumor. Not so bad for a man off chemo since Oct. He does have more pain at this point. Other than the pain and being very weak he is doing ok. March 24th will be one year since diagnosis. No further treatment is available for him unless you consider going to Europe where they have the only 7 clinical trials in progress. So with that being said, we are praying for a miracle. If we can't get a miracle then we are praying for peace and comfort. My husband said he doesn't want to hurt. I am asking for suggestions for pain control. He is on Fentanyl patch 25mcg every 72 hours, Oxycontin 5mg every 4-6 hours prn pain. He has been taking more of the Oxycontin lately - about 25 - 30 mg in 24 hour period. Any suggestions or recommendations? What about low dose steroid? His kidney function was damaged as a result of chemo. Stable, producing urine but BUN/CR still elevated. I welcome any recommendions.
Hang in there. This all can be a bit overwhelming but ask questions and keep on researching. My dear sweet husband was diagnosed March 24, 2012. It has been a roller coaster ride from the beginning. He has gone thru Cisplatin/Gemzar treatment and unable to take the last dose due to the kidney problems. It has taken a toll on him 22 units of PRBC, 2 units of Platelets, 3 paracentesis, and on 4 meds for nausea and vomiting. He has lost 65 pounds and all his lab values are out of wack especially Potassium and Magnesium. At this point and time he is not able to take more chemo. Repeat cat scan next week and then we will discuss the next phase of treatment which I strongly feel will be palliative care under hospice. He is only 60 years old and in great health until this. What I have learned from this is how much the disease is similar yet so very different for each person. All I can tell you is stay strong and do what is best for you guys. I find comfort from this site and have learned alot. Yet I know no matter how many 2nd, 3rd opinions you get, you have to do what is best for you. For us, all the tests and hospitalizations, opinions are very exhausting and have taken a toll on my husband. We are at the point that quality of life far exceeds any risk from continued testing, etc. Stay strong, pray often, and continue to reach out. Every situation is different and you have to choose what works best for you. I have found prayer is the best comfort for me at this time. It gives me strength to be here for my husband. God bless you and you are in my prayers.
Just saying hello and I am still here reading all the updates and posts. I am praying for each and everyone of you daily. God bless and keep you in his loving embrace.
Re: Through my husband, i join this very scary world of cholangiocarcinom (29 replies, posted in Introductions!)
I hear and understand your pain. My husband was just diagnosed Mar 24 2012 with few symptoms leading up to the diagnosis. Knocks the breath out of you. This has been a roller coaster ride. The one thing I consistently hear is this disease varies from person to person. All I can say is love him, get all the information you can, use what helps you, and throw all the rest out the window. You have to have a good strong medical team committed to you. We have that and it means alot. You fight all the battles with meds that work, meds that don't, procedures maybe or yes or no, insurance issues with auth for this or no it is too soon for refills on nausea meds, etc, etc, etc. I have been so vocal on this site with lots of anger!! It is ok, this is a safe place to be. What I have been able to come to terms with is the fact that this disease varies from one person to the next and some of us go through the same stuff, but many of us don't. That was hard for me especially seeing positive posts about do this or try this it woks. Like I said, read it all, use what you can, and don't give up hope. I am praying for you and your family. We are stronger than we think.
Prayers and kind thoughts coming your way,
Sorry to hear about your dad. I understand what you are saying. Hospice is wonderful and can lend alot of support to you and your dad. Unfortunately they can not be there all the time. So that is why you will probably need to hire someone to stay with him. I am praying for you. Check with your hospice team as they may be able to recommend someone that you can hire to help you. If you were in the New Orleans area, I could give you someone who is awesome. Keep looking and God bless you and your family.
Dear sweet Pam,
It is all ok. Yes we are here for each other. God has joined our lives for a mutual benefit. We are in this together. To be able to talk about this has and is so helpful and rewarding. I have been praying for your daughter, you, and your family. It seems you have a very special husband! A wise man. I guess we certainly can learn from our male partners especially when our emotions are so fragile and sensitive. God bless you and your family and please let me know how your daughter is doing. I look forward to talking with you more. Thank you so much for taking the time to reach out. I'm here for you.
I would like to thank many of you for your words of acceptance and encouragement. To know that my anger and fears are normal and to be able to express them without being reprimanded or judged is so valuable and precious to me at this point and time. Like many of you I am dealing with emotions I can not explain nor do I know what to do with them. To be able to verbalize my feelings and know you love and accept me is so precious to me. I am still in the early fragile stage with many questons and many thoughts. Still in the fact gathering stage. Thank you for hearing me out when maybe my expression of frustration was nothing more than fear. I do have a strong faith system but my husband's is much stronger. I am praying daily to God for strength, grace, and mercy. To anyone I have offended (Pamela) I apologize. That was never my intent. This is all new to me and being a nurse has not made it easier, actually it is harder. So with that said, I will remain positive and encouraging with any further posts from here on out. Again, thank you to those of you who have been uplifting with your words.
Thank you all for your words of faith, hope, and encouragement. I truly am sorry to sound so cold and angry but I am at a loss as to where to go from here. I do not mean to sound bitter or angry but I am. I don't want to make light of your hopes and words of encouragement but maybe I'm not in the receptive phase yet. I know you all know exactly where I am coming from and maybe that is why this is the only place I can truly vent. My heart is heavy and I can't stop crying when I am writing this. Just know that my strength and courage is present for my husband and our family when I leave here. You would think I had a split personality! I can not let them see my fears or my tears. Thank you for allowing me to vent and say things I wouldn't normally say to anyone. You would never know that I was a hospice nurse.....huh!! Isn't that irony at it's best or worst?
Thank you all for your suggestions and support. My husband is 59 and up until this time was in fairly good shape. This all came about after a ct scan of the abdomen for what we thought was an umbilical hernia showed he had cancer. The initial report was Peritoneal Carcinamatosis with upper section of Liver as well as Gallbladder involvement. The surgeon did a biopsy of the node from the umbilical area (wasn't a hernia after all) and that's when we were given the Dx Cholangiocarcinoma. Surgery isn't indicated. So he is on Gem/Cis Chemo. They did start him on Aldactone for the fluid. The first paracentesis 3 wks ago drained off 8.5 liters. This last one was just 2 liters. So I think that is better. I just know he has lost 51 lbs sice Feb 1 and has no energy or appetite. The nausea is constant. He is on 4 different types of antiemetics which we rotate around the clock. We live in New Orleans, LA and he has an awesome team of doctors. His oncologist is Dr. Marcelo Blaya who is in with Dr. Jayne Gurtler near East Jefferson Hospital. They are associated with MD Anderson in TX and follow some of the clinical trials and protocol. Thank you for your support.
Hello, I am new to the site. My husband was just diagnosed with cc. I have to say it has been a whirlwind of activity since March 23rd! He has been very sick since starting Gem/Cis chemotherapy. He currently is having the 2nd paracentesis for fluid buildup. It has been comforting to read what everyone has to say about this disease. I was not familiar with cc so this site has been informative and helpful. I don't know our prognosis or outcome as I have been scared and hesitant to ask the doctors. It has been difficult to face such a drastic change in my husband in such a short period of time. Thanks for providing helpful information.