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I am so happy to hear you sounding so good. You are definitely on the right track. Keep up the good work and please keep us posted.
Thanks to all of you for your support. I think I now have the train back on the track. I have decided that I have handpicked my passengers and the driver. I also have put some at the back of the bus in case I need to bump them off
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We are being treated at Mass General. When all is said and done, I think I have my team and a treatment plan too. My husband’s bili went down today (thank God) and hopefully continues to do so. Had consult with pallative care and pain is much better controlled and he seems better. The plan at this point is to continue to have bili decline and then put in stent and then start the fight with chemo. I am just hoping to get him at baseline which was 3 weeks ago.
I do have a 2nd appt set up with Dana Faber. Not sure I will leave Mass after that. I am feeling more confident now with our team. With 3 kids going to college in the fall (fairly local) I need to keep my husband close by.
Thanks for the thoughts, support, and prayers.
Its a new day, and I have come to realize it is truly “One day at a time”.Hi Devastated,
Welcome to the site. I am sorry to hear about your husbands diagnosis, but I am glad that you have joined us all here. You are right about the support that can be gained from discussion boards and you will get a ton of it here. I came here back in 2008 when my dad was diagnosed with inoperable CC and I got so much support from everyone and I know that you will get the same as well.
I am sorry to hear that you have had to fight every step of the way so far, that is not right. Where abouts was your husband diagnosed and what hospital is he in right now? Lainy mentions the option of seeking a second or third opinion and I agree with that. How do you feel about that and what do you think your husband will feel about that also?
There is nothing wrong at all with having a ramble, we all have done that! So please, keep coming back here and vent away and feel free to ask any questions that you will have and we will al do what we can to help. We know how you feel right now.
My best wishes to you and your husband,
Gavin
Dear Devastated – I wish we could have competent doctors and they would have the proper follow up and bedside manner, but then I remember we are this side of Heaven and those things are not frequently the case. So thankful that you are a cancer survivor and a great advocate for hubby. This is such a difficult disease and roller coaster ride that is no fun at all. Hugs to you as you fight the fight. May you find joy and peace along the way. Blessings, Susan
devastated,
What terrible patient care! You know how it should be. Thank God your husband has an excellent advocate, you. Keep fighting for him.
Dear Devastated, You picked the right word. Devastated. But, welcome to our wonderful family and so sorry you had to join us. I am not undertanding you having to fight all the way. May I ask where he is being treated. We are huge believers in 2nd and 3rd opinions. I am sure you already know to keep copies of all his test results. My husband had a Pancreatic problem also after his ERCP. Evidently the dye leaked on the pancreas and destroyed it. While that was “repairing itself” he developed a double e coli infection. He then had an aborted Whipple then 3 weeks later the real Whipple. It was a long recovery but he did it. I am not so sure your husband is deteriorating from the Cancer as much as he is fighting the acute Pancretitis . What is the Doctors prognosis/diagnosis? Make sure this doctor has dealt with CC before.
Congratulations on your being a survivor of Breast Cancer. I too am a survivor (almost 2 years now) of another rare cancer called a GIST, Gastro Intestinal Stromal Tumor. You have come to the right place and ramble all you want. Please keep us updated on your husband, we truly care.I’m sorry to hear about your husband and understand your frustration with the medical system. I’m a nurse also and went to the ER one day with epigastric pain. They thought it was my gallbladder but that was ruled out on US. They told me I had either food poisoning or a stomach flu and have some unrelated spots on my liver that need worked up as an outpatient. So, long story short, those spots turned out to be a mass the size of a credit card, which turned out to be cholangiocarcinoma. I spent a lot of time fighting with my PCP’s office to order me a CT scan and then an MRI and then to call me with the results. The MRI was inconclusive and the radiologist recommended a biopsy. My doctor never even called me to tell me. The receptionist is the one who told me to come in for an appointment because my imaging was inconclusive. One would think if you have a newly discovered liver mass, you would get a phone call from your Dr, but I guess not.
Your husband is lucky to have you to advocate for him. It’s hard navigating around the medical system. Do they have a treatment plan for him yet?Hi all,
I have been following this website since I learned what “cholangiocarcinoma” was on father’s day. My story is a little unusual, but same diagnoses. My husband, love of my life, father or three, had an allergic reaction to a sulfa antibiotic that started as a rash. This was day 8 of antibiotic and he became jaundice. I am a nurse, so I am well aware of juandice. Anyways, went to ER and then the workup began. They initially thought a gall stone in the bile duct, did ERCP and found stricture (cancer). They did a brushing and was diagnosed with cancer. CT scan completed, Liver biopsy and node biopsy. My husband was released and 2 days later admitted with acute pancreatitis possibly due to ERCP. He was admitted to hospital once again for 5 days and given diagnoses during that time of cholangiocarcinoma with mets. Absolute shock as you all now. Now for the third time he is back in hospital with elevated bilirubin and abd/back pain. Two days ago he had biliary drain put in and as of yet bili has not come down.
To make a long story short, I have had to fight every step of the way! I am embaressed to be part of the medical industry.
I have seen my husband deteriate in 2 short weeks. He is a avid mountain climber, runner, kept up to date with yearly physicals etc.
O.K. I am rambling. This just sucks. I know being a 7 year Breast cancer surviror these discussion boards are great support.
Just reaching out.
Thanks for listening.
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