Bighorn67
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Hi Laurie,
I didn’t see your reply to my post until now. I am doing very and in remission for now. I took my radiation treatments at City of Hope in West Hills with Dr. Yampolsky. The targeted beam technology is amazing. The last 2 weeks took a lot out of me. Heavy fatigue. I consulted with Dr. El-Khouhiery about the treatment prescribed by my oncologist and ended up using a hybrid of the two. It turned out to be very effective. Keep me posted with your progress. I’m cheering for you.
I’ve reached the 1 yearversary of my diagnosis. Had my PET/CT scan last month which showed no recurrence of cholangiocarcinoma local, or distant. Completely clear. CA 19-9 is 10. My oncologist says I’m officially in remission. I’m really grateful for this forum and for the encouragement, stories and informational support provided. For those of you still in treatment, please know that I’m praying for you. You are my heroes.
I’m sorry to hear about your diagnosis. Mine wasn’t as big of a shock to me since my family has a deep history with cancer. I’ve been fortunate that my oncologist referred me to one of the best surgeons out there who was able to get all of the tumor out. I had a different surgeon say that he wouldn’t attempt the surgery. It was really scary to hear that. Let your oncologist know that you want to see the absolute best surgeon he can get you to. Preferably at a major cancer center. Surgeons at that level can do amazing things. Keep the faith and stay strong.
I had resection surgery in June. Still have quite a bit of tightness and discomfort around the incision area. Even some numbness. I assume they had to cut through a nerve, or 2. I do have some off and on pain just below my right rib cage. Still have fluid buildup in my abdominal area. I’ve been on Xeloda since September. It caused abdominal bloating and discomfort. Hang in there, it sounds like your husband is a strong guy, so he should handle the chemo pretty well. Keep us posted and best wishes.
I don’t hate cancer. It takes energy to hate and I need all I’ve got to fight it. It has taken several family members in the last 40 years. Most recently, my Dad and his older brother. The treatments are no fun, but they are almost over. I’m not looking forward to constant blood work and scans, but they are needed. I’m tired of being poked on a weekly basis. I don’t like thinking about how long I will survive. It is the elephant in my mind. I’m stuck at home to avoid COVID and miss hanging with my friends and playing golf.
I had resection surgery in June. 10 days in the hospital and 8 weeks recovery afterward. Followed up with Xeloda and 6 weeks of radiation. I don’t know how this will extend my survival chances, but I figure it was worth the risk if it means a few, or several more years. Good luck with your treatment. I wish you the best.
