Mom had unsuccessful surgery yesterday
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Keep hope Dawna! My mom had a resection last February and spots showed up on the CT scan shortly thereafter. She has been doing the chemo regimen for the last 6 months.
Hello,
Thanks for the referral for Dr. Schwartz at Mt. Sinai. I am dropping off the scans tomorrow and will follow up with the reports from the hospital on LI.
DawnThank you for all of your support. I am certainly able to regroup and and draw stength from all of your prayers and good wishes. We began taking action, made phone calls and will not stop until we get somewhere.
I also have access to Vanderbilt in Nashville. Anyone have experience there?
Love,
DawnI’m not sure how this happened but the post about Sloan and Mt. Sinai was my response but it posted with another member’s address?? Interesting!
Anyway I am just happy a large NY hospital is taking a step forward with this disease. ANY extra coverage given to the treatment of this disease
(transplant related or not) will hopefully increase the likelihood finding a cure for every CC patient.
AshleyPerfect timing. I JUST received an email last night from DR. Myron Schwartz at Mt. Sinai in NYC. He was very helpful when I was researching resection vs. transplant for my mother this past summer. I emailed him again regarding my mother’s sucessful transplant at the Mayo. Here is part of his email response:
“We have decided to establish a transplant protocol here in NY, a collaboration between Memorial Sloan-Kettering and Mount Sinai wherein patients will receive the neoadjuvant treatment at Memorial, and the transplant (usually living donor) at Mount Sinai. “
I don’t know how soon this collaboration is starting, but if you are already at Sloane, it would not hurt to ask them about this joint venture. I was so happy to receive Dr. Schwartz’s news because this opens up options for CC transplants in the Northeast
Hi Dawna,
Welcome to the board. I’m sorry your Mum’s surgery was not successful.
My Dad went through an 11 hour surgery in June, only then to die 9 days later after never regaining consciousnes. His surgeon choose to be too ‘heroic’ in my eyes and carried on when it was obvious things were a lot worse than first suspected…. Initially the tumour was thought to be 1.5cm x 1.7cm, it clearly wasn’t…
So which way forward for you now? My Dad was in Florida but I could not recommend where he had his treatment obviously, I’m sure others may be able to help you.
Wishing you strength as you make your choices, thinking of you.
Katie
Welcome Dawna to our wonderful “family”. I am sorry about your mother’s canceled surgery and I agree about gathering her paperwork for a second opinion. Don’t forget that we have also had many turn around and good things have happened. From what I understand is that Mayo in Rochester MN is the best of the Mayo’s otherwise MD Anderson in Houston is good. I believe you can also call and fax the paperwork to them to see what advise they give you. As time goes by you will not feel helpless at all but will gather strength through knowledge and become a great advocate for your mother. Please keep us posted, we care.
Dawna,
Never give up hope and YES miracles do happen! My CC family has become as dear to me as my own.
One bit of “housekeeping” you might want to consider is getting your Mom’s medical power of attorney and making sure you are designated on any HIPPA forms. It’s simple to do and will guarantee you will be able to access all of her medical reports. In this day of HIPPA regulations this will make your life easier.
You and your family are on a journey and information is key. You will all be in my thoughts and prayers.
Remember NO question is too dumb to ask here and we ALWAYS welcome information and just plain ole venting!
Come often and know that we are always here for you and someone will always know the answer to your questions or where to find them.
Much love and many hugs…
PamDawn,
I am sorry for your mothes cancelled surgery. There is hope as Marion said. There have been a couple of people who were opened up, found out they were not resectable, did some chemo and then were able to have surgery. It doesnt happen often, but it can.Best of luck
KrisThank you for responding and for the advice. I feel as if I know many of the members on the board as everyone is enduring the same pain. Can’t let it slow you down though. Knowledge is power and I have been searching for information since we suspected the diagnosis. It is encouraging that there is hope and it is also encouraging that many members have been able to halt the progression. I am sure I will have many questions and will need help along the way. I am praying I can discover something along the way that can help others on this board. Miracles happen right?
DawnDear Dawna…I am so sorry that you had to find us but, I am so happy that you have joined this board. Unfortunately, the true extent of the disease can only be determined during surgery and if you read back on the previous postings you will see that it happens quite often. Having said that, many of our members have been able to halt the progression of this cancer through various ways including, chemotherapy or, radiation or, both. There is hope and, hope is what drives us. You would want to contact at least one or two different physicians treating Cholangiocarcinoma for second, third, or more opinions. Make sure to gather all medical records pertaining to the diagnoses of this cancer including, blood test, CT scans, doctor’s reports, etc. The information coming at you will be overwhelming therefore, your Mom will need someone advocating on her behalf This site and the members are a great resource something, you might want to use to it’s fullest The search functions (top of page) will lead you to prior discussions regarding virtually everything pertaining to this cancer and of course please, put out your questions to the great members of this site We are here to help in any way we can.
Best wishes coming your way,
MarionI have never posted on a message board in my life, but I am desparate for help. They thought my Mom’s bile duct block was resectable, but during surgery, very tiny spots on the liver were present. They did not present themselves on the CT scan. Doctor said that chemo is the only option at this point. Any successful treatment stories? We are in NY at the moment but she lives in Florida. Thinking the Mayo in Florida.
You are all are so brave for sharing your stories. I feel helpless.
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