It’s been a long year
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I’m back to report that I am home now from my transplant at Mayo Phoenix. I was on the list for 45 days and then got called in on January 2nd for a procedure early on the 3rd. Things went very well and I was discharged with no complications. I’m feeling a moderate amount of pain, but it’s not too different from the transplant staging surgery that was done earlier in November — just a much larger scar.
I refused to ring the bell when I finished radiation and the first round of chemo back in November since I knew I had a lot more to go through, but I have an appointment with radiation oncology tomorrow and I plan on ringing that thing loudly!
Now it’s onto a very long road of recovery at home, medication management, and vigilance to surroundings and food. I’m thankful for the support group here!
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 Scooterhanson,
Thank you for posting your story. As you mention, not many cholangiocarcinoma patients qualify for a liver transplant, so your story is both inspiring and also helpful for newly diagnosed colleagues looking for treatment options. Now that you are on the waiting list, I hope you get your call soon – that would be a great holiday blessing for you and your family.
Your experience with Mayo illustrates how important it is for our patients to seek care from medical providers that are highly experienced with our rare cancer. For readers new to our site, this is a good opening for me to alert you to the specialist map available on the Cholangiocarcinoma Foundation website which can help you identify doctors in your area who see a lot of cholangiocarcinoma patients.
Best wishes that your transplant happens soon and brings positive results. Please keep us posted.
Regards, Mary
Diagnosed with PSC in January (had UC for about 20 years), and at my 2nd ERCP of the year the surgeon noted signs of abnormal cell growth. The third ERCP (for stent replacement) confirmed CC. I’ve been going to Mayo since May (maybe the best decision of my life) just to have all of my doctors talking to each other, so they pushed hard to get me approved for the Mayo protocol. I spent the month of October on Capecitabine and proton therapy (yes, my insurance approved it), followed by 3 weeks respite, and then back on maintenance doses of Capecitabine (2 weeks on, 1 week off, and it’s actually a larger dose than the therapeutic cycle).
I was approved by Mayo’s transplant team in early November and I was listed with UNOS a couple weeks later, following a staging laparotomy to verify the lymph nodes showed no metastasis. So, now I’m waiting for the call and everyone in the family has bets on when it will happen (mostly around the holidays).
My next ERCP and stent replacement is scheduled for mid January and I’m hoping a new liver comes before then — I’m getting really tired of ERCPs and chemo.
I wanted to post this mainly as a hat-tip to Mayo for fighting so hard for me. I know there aren’t a lot of us that meet the LT requirements and I wish that were different. I just got lucky that they caught it so early.
I’m always open to questions about the process so far. I’ll be sure to provide an update after the transplant actually happens.
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