Thank you Kris!
My husband passed away July, 2011. I asked for a lot of our records during his illness but now my daughters are considering genetic testing. Is there a way for me to get his complete records from each place- family, oncologist, surgical? Thanks!
Re: Surgery on Stage IV Cholangiocarcinoma with Primary Sclerosing Cholang (18 replies, posted in Introductions!)
You are in excellent hands! Dr. Marsh and Dr. Geller of the UPMC Liver Cancer Center also were involved in my husbands surgery. I will be keeping you both in my prayers!!
I am so glad we fought and fought. Every minute we had that wasn't supposed to be made our lives so much better than I could ever have imagined. I thought I knew how much I loved him but after his diagnosis it took on a whole new meaning. Jeff Was such a good person. He was a great father and the best husband and friend anyone could ask for. I will forever admire his courageousness. I can only hope to be half the person he was.
I feel your loss, I understand how you feel. I miss my husband so very much. I try so hard, for my daughters, to be strong. I hear how I'm doing so well but most people don't know how I cry myself to sleep, wake up missing him, cry on the way to work And then home. The only thing that keeps me from going crazy is that I know we will be together again. I am so very sorry for your loss and will keep you in my prayers. Take care!! Jenny
Thank you all so very much, it is truly such a comfort to be able to speak openly and be understood!
I feel like we shared the exact experience. I am so very sorry to think someone else had to go through this with the same outcome. I don't know what tomorrow holds but I thank God for this website and the kindness of everyone involved. Thank you!
I always seem to come here when I need to open up and just unload. Jeff has been gone now for almost 5 months and I just don't know what I'm supposed to be doing! I miss him so terribly much and I try so hard to be strong for my 2 daughters, but I just can't figure out who I am without him. Saturday my oldest daughter graduates from college, we are having friends and family over afterwards to help celebrate. It just hurts knowing how proud Jeff was of her and how he should be there Saturday! I hate when I think this way, I just don't even want the holidays to come! It's going to be so hard but I want to be able to be there for my girls. Sorry, this sounds as if I'm completely crazy! Thanks for the outlet! ~Jenny
I haven't been on in a while but after reading your post I needed to. My husband lost his battle with cc on July 26th. Everything you wrote is exactly how I feel too. I am so sorry for your loss. For me driving in the car is the worst, i begin to cry and that's it, I just lose it! My two daughters are back in school, my youngest just started OSU in Semtember so, it's pretty quiet at my house now too. I will be keeping you in my prayers. The only thing that keeps me from completely falling apart is knowing that Jeff and I will be together again. Take care. -Jenny
Jen, That is absolutely wonderful news!!
Wishing you the very best!!
Dear Ken and Family, I do not post very often but read almost daily, and was so very saddened to hear about Rick. I am so very sorry for your your loss. You will be in my thoughts and prayers. ~ Jenny
"Crazymaking", what a perfect word to discribe this journey!! Wishing you and your husband the very best! ~Jenny
I will Susan! We do alot of hugging!!!
Lainy, the oncologist and lung surgeon in Pittsburgh both feel it is the cancer causing his shortness of breath. Both lungs have several patches, I guess the cancer doesn't let his lungs fill to full capacity. As soon as he exerts himself at all, his breathing is labored. And I mean, simply walking down the hall to the restroom. Some days he is optimistic, usually very upset that he isn't able to do anything. Thanks! Jenny
Hi everyone, just wanted to say we did not go with Cancer Treatments of America. Not really sure why, just didn't feel like they were the right place to be right now. Jeff is still have difficulty breathing but is also still doing chemo. Last week he had both Gemzar and Oxsaliplatin, which kicks his butt and then yesterday had just Gemzar. I really don't know how he does it! I just wish he could take a break, gain a little weight and get stronger! But he feels the chemo is the only thing keeping the cancer from growing and making his breathing even harder! Thanks for listening...again! ~ Jenny
Just read the posts and just wanted to let you know I will be keeping you and your family in my prayers. Take care of yourself too! My best wishes for a relaxing and enjoyable trip!! Jenny
Thank you Pam and Susan, it is so nice getting on here and feeling all the support and understanding. Sometimes I just feel like this is the only place to go just because everyone here knows first hand what this is all about. Thank you!! ~Jenny
Thanks so much Lainy and Marion. We haven't made the appointment yet but are talking about it. Thanks for the advice, it means alot! Jenny
Hi Lainy, yes, our oncologist said last month that we may want to consider contacting hospice. And believe me, I have read so many peoples stories on their experiences with hospice, I just am so afraid to make the call. I just feel like I am giving up! He is so uncomfortable now though. Maybe your right. Thanks. Jenny
Thanks for your concerns but, unfortunately our doctors say this is due to the cancer in both lungs. He has oxygen that he uses when it gets hard. I am just not sure the Cancer Treatment Center is going to be of any help, I just don't eant ot put him through anything more. Hope that makes sense!
Hi, I haven't had a chance to write lately but have checked the site often. I just had a quick question about the Cancer Treatment of America. We just contacted them today and are waiting for a follow up call tomorrow morning. My husband Jeff has CC, long story short, was diagnosed in Feb. 2009, surgery in May 2009 did chemo then in August 2010 found the cancer had returned to his lungs this time. He had been doing gemzar and oxsaliplatin but the oxsali was too hard on him, he was aspirating. So they discontinued it and only did the gemzar weekly. He is having trouble breathing now. And it seems to be getting worse. So I quess we're just looking for something to help, hope it is this!! Any suggestions would be wonderful!! Thanks so much! Jenny
Hello everyone. My dad was diagnosed with cholangiocarcinoma 2 years ago at the age of 46. He had surgery to remove the cancer but it came back in August of 2010 and metastasized to his lungs. Right now he is having gemcitabine and cisplatin chemotherapy. I read about a clinical trial at Sloan-Kettering Cancer Center that is using gemcitabine and cisplating but also giving the patients a pill called sorafenib.It is suppose to work by stopping a signal made by cancer cells that they need to multiply and grow.
Has anyone heard of this pill before or have any information about it? Or, if anyone knows of any other trials available. My Dad is becoming very discouraged because we are not seeing signs of improvement.
I am so very sorry, you and your family are in my thoughts and prayers.
I am so very sorry Hans. My thoughts and prayers are with you and your family. ~Jenny
I haven't been on lately here either but saw your post and wanted to say Hi. My husband Jeff was diagnosed Feb. 2009, and in August of this year the fluid started in his lungs. But his ended up being a hole in his lymphatic channel that was leaking chyle into the lining of his lungs, I guess this is pretty uncommon. We had them tapped two times and then had plurex catheters put in which we drain once a week. Just wanted to tell you we've been doing this for a couple months and the fluid has just about completely stopped! He was also on an iv antibiotic, which I can't remember the name of right now...sorry. We are to have the drains removed in January. Our latest PET scan showed the cancer had moved into his lungs and abdomen now, so we are back doing chemo also.
I will be praying for you, Dave, and your family.