Cholangio carcinoma, any one out there that can share

Hi thank you for replying to my post. I didn't think I'd get too many replies since it is a rare cancer. Unfortunately, I do know a lot about it from so much research on it in my desperate search for something out there for my husband. The only symptom he had from the list was being tired. All blood work came back normal. Kept thinking it was Lyme's disease which he had three times.

I was hoping I would hear from Michaela who had posted about her husband who had the same cancer but not sure how old the post was.

Your right though, there is a lot out there for new treatments for many different types of cancer. My husband's type of cancer has no cure & there is not much out there. I have found a couple of treatments that we have discussed w/ his doctor.

It's scary, it's more about , how much time he has left which is very heartbreaking. My husband spent his whole life saving others. He worked the ambulance, police, rescue, & fire dept.

Thank you again. I do appreciate the time & thoughtfulness in helping me & getting back to me.

Hi Lynne82918 don't give up please.

I had carcinosarcoma with spread and given 11 months in 2012 . I will never be cured. I had the most awfull treatment schedule and have the most awful side effect which affects my quality of life, but I have survive. Has your husband been given any treatment options if not, he can approach to do clinical trials. That's if he wants treatment, some people opt not to have treatment. Always remember there is a wide spectrum of individuals and if you are fit and healthy at the start then you will have a better outcome than the elderly with pre exsisting conditions.

Have you sought a second opinion yet. Its common with cancers with a bad prognosis to get a second opinion, no offence is taken by Drs. Mine confirmed I was getting the correct treatment. When you are fighting for your life you will try nearly anything.

Try messanging Michaela there are a few you could try to contact on that thread that may help. They do mention trials and having survived 4 years and second opinions etc.

Please try the Cholangiosarcoma Foundation Discussion board I will put the web site in a seperate repy in case it is moderated. Here you will find survivors of this type of cancer and perhaps you can communicate with them as you don't seem to be getting much response here. I think the longest survivor on that site is 11 years.

Please do not give up. Life is too short and precious.

Sending you both warm hugs.

Sorry I forgot to ask what country are you in ? I'm UK.

Sorry I have just read the rest of your reply to Michaela about your meltdowns. I had a lovely partner who looked after me 24/7 then 18 months ago he died suddenly, post mortem showed no cause for death, it was sudden death syndrome. Life is strange and very lonely now. I have a young son and have to keep going.

Life does not alway turn out as we anticipate so make the most of what you have. Live for the, here and now, and try to enjoy what you have.

Meltdowns are allowed, but it's better just to try to keep positive and keep going as long as you can. Be honest with each other.

I will never forget the devotion and love shown to me by my partner I could not ask for more.

Hi! I am so sorry to hear you have it also! You have my prayers ! My heart goes out to you knowing what you are going through from what I see , hear & feel that my husband goes through. I have not lost my faith and try to keep my husband stay positive. I am his advocate & always looking for something. I never push any thing on him but he knows I'm not giving up. We are in the US. My husband's only option is chemo treatments. I have been in touch w/a doctor in New York who has been very helpful. Her institute cannot take his case. Many places I've called & research have the same treatment that he's getting now. He was supposed to participate in a clinical trial which we felt fell in our laps , it was last minute & only one spot open but due to all that was going on with his lungs he could not. There is an option that maybe coming up, which if you can , try & ask about it. It's a gene FGFR 2 which they have found in many patients that have this cancer & the treatment is FGFR inhibitors. It is in a clinical trial right now in Massachusetts, Mass general hospital. I can also if you are interested can give you information on the clinical trial my husband can't do right now. Let me know. It has shown good results.

Thank you for the info on the cholangio carcinoma foundation. I have been on it & found it was very helpful in many ways.

You are an inspiration, & congratulations on your survival against all odds. Please keep it up & you have our prayers now.

Again let me know if you want any information I have found. The trial is out of the national cancer institute.

Thank you for reaching out & sharing. I cannot thank you enough.

Hi. Thank you. I am sorry to hear about your partner. It must have been devastating. You are right about living in the moment. I lost my mom & brother 9 weeks apart from each other from lung cancer.

They both had a terrible time & it was awful & very sad to witness.

Thank you again & I truly am so sorry to learn about your partner. Prayers & big hugs!