I'm going to suggest that you ask about CTCA in our Questions section (click on Questions in the blue bar above). More people will see your post and might be able to give you more feedback. Hope this helps!
- Lincoln, NE
- Member Since Jun 2012
Their Diagnoses (1)
- Caregiver: Bile Duct (Cholangiocarcinoma) Cancer
- Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: over 5 years ago, Female, Age: 61
- View this journey (5 Experiences)
jparker21988 posted an update
My Mom, Dianne, age 56 has cholangiocarcinoma. Diagnosed in Dec 2011 and it's been incredibly downhill from there... Unsure about treatment options at this point...nothing seems to be working. Live in Lincoln, Nebraska but heading to Cancer Treatment Center of America in Zion, IL within the next week or so.... Any words of advice for CTCA? Things to ask? Where are you all getting treatment? What made you chose the facility you are going to? I would love to find someone who has gone through treatment at CTCA before to talk with my mom. She's so severely depressed and she keeps quiet and to herself anyways. I think it might really help her hearing that she's not alone, and maybe they could reassure her about CTCA, she was very unwilling to go at first. After a family intervention, she agreed. :)
She has 3 biliary catheters out of her side, and an additional one coming from her gallbladder, has gone 1 week radition in January but wasn't successful, she came down with 4 deadly blood infections at once! ICU for a while, but was released when miraciously healed. They made us go talk to her about moving her to hospice, etc. She wasn't ready to give up. I commend all of you cholangio patients for your strength and determination. Has been doing chemo since late January when released from ICU. No progress....
If anyone can help please email me, it would be so greatly appreciated!
I am treated at Memorial Sloan Kettering in Manhatten. I travel from VT for treatment. I also have an oncologist here in VT that works had in hand with my primary oncologist at MSK.
My tumor is inoperable. I have a Hepatic Artery Infusion pump which pumps chemo directly to my liver -- no side effects. The tumor started to shrink and then metastasized to my lymph nodes. I am now being treated with systemic chemo.
I feel great. I went back to work after surgery. But I am not encouraged. This cancer is an agressive one.
Hope your Mom does well at CTCA.