New here and warmed by your stories
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Oh thank you and so sorry for your loss. It’s kind of hard because Daddy and I haven’t had the closest relationship, but he’s still my Dad and over the past 5 years or so our relationship has improved which is such a good thing. He’s had some other health bouts within that time frame but this, this just seemed so … final. And no one’s life ever is forever … no one knows what is truly in the heart of another, but I do know that I love my Dad and the fact of him not being there today feels overwhelming right now. I can only imagine his fears. Earlier Margaret had mentioned a higher power and I’m grateful that I’ve developed a relationship with my own Higher Power over the past 25 or so years. I’m able to pray for acceptance today, not for anything specific except to remain humble (teachable) and watch for the lessons and blessings contained in this life chapter. Thanks again for taking time to write.
Hi Linda and welcome to the board, like the others have said I’m sorry you have had to find us but you will get support by the bucketload on here….
Just to let you know that many people will be thinking of your Dad and your sisters and yourself as he heads back to MD Anderson for more investigations.
Please come back and update us, I didn’t discover this wonderful website until after my Dad passed away nearly 2 years ago but the support, knowledge and advice is second to none.
Wishing your Dad all the best on his journey with cc.
Katie
Margaret…thank you for your encouraging words. So happy Tom is still with you over a year after he was told “don’t bother treating it.” That is unbelievable! We’ll be sure to seek other opinions as we go along or at least I’ll encourage Dad to do so.
We saw Dad this weekend, and were surprised at how bad he was feeling in only a week. We did have a great visit in spite of that. All four daughters were there amongst others. He even sang some old tunes with us that I played on my guitar.
He is returning to MD Anderson this am for preliminary tests before a needle biopsy and scan to be done Tuesday. Outcome of this should determine treatment as he’s got a number of issues to triage, aneurysm, the shoulder’s deterioration from cancer, the colon involved, some things that are operable but won’t do surgery before knowing if chemo must come 1st. You probably know much more about this than I do.
Thanks again for your words of hope when I was feeling pretty, well…hopeless. More as we know, blessings to you, Tom and all else who visit here.
Linda: Don’t let this scare you. My husband Tom was told in Dec. ’09 that radiation and chemo would not help him and to go home and get his affairs in order. This was after he’d had a successful resection some 18 months earlier. He presented with Jaundice and they found a new inoperable tumor in his remaining right biliary tree that also encompassed the hepatic artery (therefore inoperable)
We did not listen to that oncologist, and sought 2nd, 3rd and 4th opinoins. Tom underwent 28 rounds of radiation, had an external drain tube ‘installed’ to relieve the high bilirubin levels and he also did some oral chemo, Xleoda, and about 4 rounds of IV chemo, Gemzar and Cisplatin.
When I helped him shower one day I asked if he’d turn around cause I wanted to ‘check out his butt’ and then I told him “I do not see an expiration date stamped on your butt” and thank heavens for that!
Here it is some 19 months after that onc told him that there was nothing they could do and you know what? Tom is still here with me KICKIN’ THAT cancer!
Tell your Dad to live each day to the fullest, never take ‘no’ for an answer, instead ask “What else can we try”, make sure his doc’s have some experience with Cholangiocarcinoma or can ‘tap’ into doc’s that do. Keep the faith and believe in a higher power.
Go with God and KEEP KICKIN’ THAT cancer.
Hugs,
MargaretLinda – Cholangiocarcinoma is very varied in each patient. We have seen on this website folks who have only lived 3 weeks from diagnosis and those that have lived 7 yearts….and some even cured. There is no straight forward answer to this, and I think that’s probably a good thing. Many other folks will say it, especially when it comes to “cc”, none of us have an expiration date stamped on their feet.
We are all glad to listen and help you as things moved along. I under M.D. Anderson is a wonderful facility. Wishing you and your Dad and family nothing but the best – Nancy
Thank you for the warm welcome from everyone. No matter the situation in life, it is good to know we are not alone. I am not Dad’s main caregiver, on the contrary, I live 6 hours from him. But I am happy to be involved at whatever level he and his immediate family needs me to be and I’m staying in close touch with them. I will continue to return here to see how you are all doing also.
This all began with Dad’s GP noticing his liver was “enlarged” and upon closer inspection (CAT I think) it was noticed there were spots on it and the lungs. Colonoscopy indicated a small mass, then all data and Dad were sent to M.D. Anderson in Houston for a work up. He had a sore rt shoulder and that xray indicated cancer which shocked us all. I understand his liver is 2/3rds involved, there are 2-3 tumors there. It’s already been said that this is incurable and inoperable. After reading some of the “faces of CC” here, I’m freaking out realizing how swiftly this moves when it’s metastisized (sp?). I mean, we’re not talking months and/or years, we’re talking weeks (am I reading that right?), I feel sick at my stomach even saying that. The only “hope” I can muster is that Dad doesn’t suffer and that I am able to be the best daughter I can be in his numbered days. I liked this quote from Abe Lincoln so added it to my signature…it’s all we have. Thanks for listening.
Hi Linda,
Welcome to the site. Sorry that you had to find us all but I’m glad that you have joined us here as you will get a load of support and help from all of us. Please don’t worry about where you post on the site and yes, you have posted in the right place. Please feel free to ask as many questions as you have and all of the members here will do what they can to help answer them. We also have an excellent search forum function at the top of each page and using this will throw up a lot of discussion on all topics by the members here. Looking forward to hearing more from you soon.
My best wishes to you and your dad,
Gavin
Hi Linda,
Would just like to join the others and welcome you to our cc family.
Please come back with any questions our worries you may have, a problem shared is a problem halved,
Best wishes
Andrea
Linda, sorry you had to join us here. Try to get a game plan in place quickly and understand because CC is rare you may need to go somewhere inconvenient for treatment because the success chances are much better at the major big city cancer centers. You want to find people whom have dealt with many cc cases. Time is your enemy here until you have a plan in place. The links under my name point to US doctors/hospitals which you may find useful. I’m assuming you are in the US, which may be a rash assumption.
Good luck in you quest for care for your Dad.
Hello and Welcome—-
Sorry to hear about your dad. I too was dx’d recently. the dr’s will work quickly. We will be here for your family. This site and the people are awesome. They will get us through. Let us know what is planned.Monica
Hello Linda. Yes, you have posted in the right place. Welcome to our site. The diagnoses of CC brings with it confusion and misunderstanding. It is really important to educate yourself about this disease. Our site will offer much information as do other websites. But, support and sharing of information is very unique to the CC discussion board, as we understand, know, have heard of it, and are willing to share our experiences freely. The tips and hints others will share with you are unique to the members of this site. And, everyone is really nice too.
I am a strong believer in multiple expert opinions considering this cancer to be considered rare and many physicians have little contact with a CC patient. Therefore, make sure to have copies of everything pertaining to your Dad’s diagnoses including, blood test, doctorsHi Linda and welcome to our wonderful family but sorry you had to join us. You posted just fine. Yes, CC is difficult but its not hopeless, we must always have hope. Can you tell us a little more about your dad? What did the doctors say and where is he being treated? Honestly, once a game plan is in place you will feel better as you will know something is being done for him. Please keep us posted, we care.
Hi everyone…I probably am not posting this in the right place but wanted to get started somehow. My Dad was recently dxed w/ cc and reading on this site I’ve realized that this will be very difficult, not that I didn’t think it would be, it just sounds like it’s going to go a lot faster than I thought it would. I’m grateful for this source of support and appreciate you all. More soon.
Linda
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