Ktoram
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Scott,
Thanks for sharing your story. I was diagnosed one year ago and eight months since OLT. Recovering well. Life is not the same but i am very happy to be on the other side of the fence now. All the best. Keep us updated as your journey progresses.
Fighting is fun. Giving up is not.
Hi,
Welcome to our group and sorry to hear about your dad. I used Sarna lotion with Camphor last year. It feels like burning at first but it will fade away. You can also try Sarna lotion just plain. Its available in Target.
I tried showers with Epsum salt. But its a hassle. I used ice cubes in zip lock bag and just rub over my body. I also used coconut oil To keep my skin moist. None of them are perfect but they will help soothe the itchy feeling.
It will take some time for for the bilirubin to drop if they placed stents correctly.Hope this helps. Fighting is fun giving up is not.
KT
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Good for you and GOD bless you. You are extremely blessed and very fortunate to have this disease diagnosed early. I was diagnosed around the same time and now recovering Liver Transplant surgery. Thank you for sharing your story.
Hi,
I had two biopsies one at TGH and second one at Mayo Clinic. Only fist one came +ve. Liquid biopsy didn’t give much information in my case. Mayo had to use TGH report for UNOS Liver Transplant waiting list. Hope this helps. Prayers for yours mother health?.
KT
Hi Touchdown,
Thank you for posting. I got LT 3 months ago. Underlying disease was CCA. Would you be kind enough to post your experiences and treatment more in detail for documenting on this discussion board. I know lot of people who were like me. It will be very useful info for us in future.
Kindly,
Ktoram
Hi,
I was on waiting list for 55 days before LT at Mayo Jax. I accepted liver with Hep C and started treatment. All is well and recovering slowly. You are in good hands at Mayo. The zombie side effects from Chemoradiation will go away with time. All the best.
ktoram
Hi Findacure,
Placing stent through ERCP is a simple process. I had 5 of them this year before going for LT. The most difficult part was fever and infection. I ended up in ER several times with high fever. But I did it any way because it relieved me from symptoms. Know that it’s not going to fix the underlying tumor growth. The plastic stent needs to be replaced frequently.
All the best. My motto – “fighting is fun, giving up is not”
Hi,
I recently used Xeloda and my Oncologist at Mayo Clinic ordered DPYD gene sequencing test before starting chemo. I had typical side effects but tolerated well.
Hope this helps.
Update:
I got liver transplant at Mayo Clinic Jacksonville, FL on Oct 16, 2019. I am recovering well. My family, friends and team of doctors helped me a lot and fought hard for me.
I accepted liver with Hep C. Will start treatment soon for Hep C. My surgeon at Mayo was Dr.Dana Perry. She is my guardian angel.
My suggestion to newly diagnosed: Please do your homework for cc. I consulted four different hospitals/doctors before heading to Mayo. Two of them, suggested and referred me to Mayo. Third talked about surgery (not possible as it was on both sides of liver) and fourth mentioned combination of radiation and chemo. So, please please do research and consult more doctors before starting any treatment. Thank you ccfoundation for excellent information. Without this information, I would have chosen different treatment.
Feel free to send me messages for any questions you may have to – ktoram at gmail.com
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