Forum Replies Created
Russ, I’m so sorry sir. She was far, far too young! My Father walked that same path with my Mother, until it finally overcame her physically. For what its worth, as a son, my admiration and respect for the two of them grew beyond words watching them fight with such heart and with such love for one another. Still, our lives will never be the same without her, just like yours will never be the same without Peggy. It really is a horrible cancer! Again, my deepest condolences.
So sorry for the passing of your father Mr. Terranova. I too understand the bitterness of painfully watching a parent suffer, with the silver lining of feeling great pride for how hard they fought. We learn so much from watching them bravely carry-on, right up until the battle becomes too much. For me it drew me even closer to my Mother and my admiration for her grew stronger and stronger, right up until her passing. Unfortunately, as you said, the void lingers and changes everything. My deepest condolences to you and your family.
Very nice picture of your father Gavin and you have such a resemblance to him! Its nice to see he was up and about shortly before his passing. Still, I’m very sorry for your loss. Though I obviously never knew him, I think he would be proud of you considering all you give back on this forum. I’m not always very active here, but I feel that anytime I post something, you are one of the most consistent ones to respond. Thank you sir and again, my deepest condolences.
Hello CC family,
I apologize for not posting for a while, my wife was diagnosed with breast cancer about 6 months ago and I’ve been distracted from Mom’s ICC. The past year for Mom has been trying. We had no success with SBRT radiation, immunotherapy (opdivo), capecitabine (xeloda), and two different forms of BRAF/MEK inhibitors. Though the cancer has not metastasized outside of the liver, she now has multiple tumors and they have not slowed in growth. However, its difficult to judge whether the treatments have had any effect because she hasn’t been able to tolerate any of the treatments for a substantial amount of time. The biggest issue right now is her nausea. She has medicinal marijuana and she goes twice a week to get saline and zoloft, but it really isn’t enough. We are meeting with palliative care nurse next week; in the mean time I really could use any advice to curb the nausea. Thanks everyone!
MikeMarch 14, 2018 at 11:38 am in reply to: My Father Aged 57 Diagnosed with Cholangiocarcinoma (Dec, 2017) #96729
I’m so sorry for the news. I, like all of us here, understand how that feels. My mother has been fighting this since Nov. of 2013. Though its been a bumpy road, she’s still here and over that time she’s taken trips to Norway, Aruba, Hawaii, and lots of weekend trips to B&B’s. She’s enjoyed birthdays and holidays. My point is, your father may go through some really hard times, but he can still live his life! You can too! After 4 years my family and I, although still scared, have learned to manage day by day. Of course Mom has missed out on things and had to make sacrifices, but thats just the way it is. Stay positive and try not to get too consumed by research and family discussion about this. Trust me, it’s important not to let your life be taken over by the cancer in a cerebral way. How ever much time my mother and your father have left, we want to remember them as our parents. Not a patient with cancer. I really hope I’m wording that properly and it makes since. So, on to my expertise. Is it intrahepatic or extrahepatic? That can make a difference in being a candidate for a transplant. In my experience (intrahepatic) it’s a waste of energy to think about. Local surgery has always been advised when possible. Though, for my Mom it has come back every time (3 surgeries). We also have tried microwave abelsion. Much less intense procedure than surgery. She experienced some pain, but in was an out-patient procedure. However, our experience with abelsion never really worked. Both times a tumor appeared in the exact same place on her next MRI. The only systemic treatment we tried was chemo (Gemzar & Cisplatin), as a preventative treatment (no tumors present at the time). But several months later, it was back. Recently we tried SBRT beam radiation. Although the initial CT scan showed a significant reduction in both tumors, the follow up MRI showed that only one had reduced (slightly) and that she now had a total of 10 masses… before this she never had more than a single tumor. We are now researching clinical trials and “non-traditional” cancer therapies. But my advise, which I’m sure is what your doctors will advise, is to use local treatment if possible. Don’t look for alternative treatments unnecessarily. Hope this helps.
By the way, best of luck and welcome to the forum and I hope my story is helpful in someway.
I maybe a little late. Johns Hopkins is considered one of the leaders in liver cancer. That’s why we tried it for my mother. Here’s my experience…
We had been using a really great team at Lankenau (it’s just outside Philly). 4 years ago preformed her first resection (nearly 40% of her liver) as well as an ablation. When it came back a 3rd time and Lankenau wanted to do another biopsy, we decided to get another opinion. At Johns Hopkins, we met a Dr. Weiss. He was very confident that the cancer had come back and recommended skipping the biopsy and performing surgery. So we did it. The surgery went really well and it was the cancer. Her recovery in the ICU was as smooth as we’ve ever had (she’s had 3 surgeries to date). HOWEVER… She had a leak. The wound wasn’t healing on the inside. A bile duct could not close up due to how much was leaking out. She changed her bandages daily. We even saw several “clips” come out of her. We were told that these things happen and basically that nature would have to take its course and her body would heal. We live in NJ and took numerous trips down there at the request of Weiss, but nothing was done other than “monitoring” the situation. After my father (and a nurse who came 3 days a week) had to clean the wound daily, we decided to head back to Lankenau. Dr. Carp (our original oncological surgeon) immediately recognized what needed to be done. He also stated that the leak could have carried on “indefinitely”. He sent us to a Dr. Etemad (also at Lankenau) for an ERCP. When we emailed Dr. Weiss about what Dr. Carp recommended, his response was “Thats a good idea, I wish I’d thought of it. But, I a big enough man to admit when I’m wrong and I was wrong”. The leak slowed and eventually stopped shortly after. Needless to say “Dr. Weiss” is a dirty word around my family. However, we have not written off the entire hospital since one doctor doesn’t represent the entire hospital. If surgery is an option and you are in the area, I can’t recommend Lankenau enough. Dr. Carp and Dr. Zeger have been absolutely fantastic! They are still fighting the good fight with my mother!