Liver Cancer Support Group Meeting

My name is John and I live in Houston. A year ago I was diagnosed with Cholangiocarcinoma and placed on chemotherapy, starting with Paclitaxel and Carboplatin. I tolerated these well with the usual side effects. After a few treatments my oncologist placed me on Cisplatin and Gemcitabine. The Cisplatin caused problems with my kidneys so I finished the chemo cycle of 6 treatments with Gemcitabine only while obtaining approval for the immunotherapy drug Imfinzi. I was infused today with my third Imfinzi treatment. After my most recent PET scan, my diagnosis has been updated to Intrahepatic Bile Duct Carcinoma. The liver cancer is too scattered for surgery and only the largest lesion shows any growth. The rest of the liver cancer has shrunk and some lesions have disappeared. The most recent blood work shows good bile duct and liver function. I that's my journey to this forum. I look forward to participating in this forum and welcome feedback. John

It is indeed a journey, John. It is important to reach out for feedback, and to remain positive. I was recently diagnosed with Stage 4 liver disease, with extensive scarring, confirmed by a second opinion. I have not had a liver biopsy, but it is on my "to do" list. Question: Have you or anyone else read about the possible connection between liver disease and a-fib, caused by a decrease in blood flow?
Sarah.

Sarah, thanks for your post. Once I started chemo my blood pressure went to the 190's and everyone on my treatment team went nuts. My oncologist stopped chemo and my primary care physician put me on blood pressure meds. I requested a Heart Ecogram and EKG. Both showed good heart functions. My primary care physician was not satisfied with my blood pressure being in the 140's while having chemo also and she added another blood pressure med. I'm now in the 120's/60's blood pressure, off chemo cis+gem treatment and on immunotherapy drug Imfinzi. My Stage 1 cancer started in the Bile Ducts and spread to my liver. My latest PET Scan showed the cancers have not spread except the largest liver lesion has grown a little. I feel good and my oncologist is pleased. After my latest blood work my liver biomarkers showed good liver function. I did have a liver biopsy which confirmed the liver cancer in the beginning. It is certainly possible for liver scarring to damage the blood flow to, from and in the liver. My daughter is having heart a-fib after having covid twice and thyroid cancer surgery. Please stay in touch on this forum and feel free to contact me. I'm John, live in Houston and receive treatment at the Genesis Cancer Clinic.

Hi @jalewallen74 and @sarah82, I've just been informed that the monthly support group for Liver Cancer will not be running in 2023. Please join the discussions in the online forum here:
- Cancer Support Group: https://connect.mayoclinic.org/group/cancer/

Here are a few Liver Cancer discussions that will interest you:
- Living with Stage 4 Liver Cancer https://connect.mayoclinic.org/discussion/living-with-stage-4-liver-cancer/
- Y-90 liver cancer treatment https://connect.mayoclinic.org/discussion/y-90-liver-cancer-treatment/
- Anyone with Hepatocellular Carcinoma (Liver Cancer) want to share? https://connect.mayoclinic.org/discussion/hepatocellular-carcinoma-liver-cancer/

Good morning, Colleen. I have not been diagnosed with liver cancer, but have liver disease. I hope to find a support group, but not necessarily for liver cancer (although my diagnosis may change with more tests).
Sarah.

Hi!!!
I also have stage 4 liver disease with 1.8 cancer tumor. Before diagnosis I had inconsistent A-fib. Concerned, I visited my Cardiologist and a series of tests were run. Other than new onset high blood pressure, the MD reported everything was good with my heart. However, after asking questions with my liver MD she confirmed the extensively high BP (stroke numbers) and sporadic A-fib was kidney related. Which plays a big part with liver disease. Now, I do intend to get a second opinion. Hope this helps. Lynda

Good morning, Lynda, Thank you for sharing your experience w/ liver disease, a-fib and kidney disease. My husband has stage 4 kidney disease and will soon start dialysis, so I was familiar with those symptoms, but I had not put that piece of the puzzle into my diagnosis. I feel exhausted from tests I have taken during the past two months, as well as securing a second opinion for the liver disease. I have had symptoms for the past two years, and only learned my liver diagnosis six months ago. It has been a frustrating experience, going from one doctor to the next doctor; my cardiologists shook their heads and prescribed antacids; my friends do not want to hear my talk about my symptoms, and tell me to stop Googling. Please keep me posted on your findings and your progress. Sarah