Long overdue update!
- This topic has 5 replies, 6 voices, and was last updated 7 years, 3 months ago by
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Hello Kathy,
Thank you for sharing, and it is incredible how you continue to fight this condition. The most important is you are living your life to the fullest. As we have said on this board, CC will be a chronic condition we call live with once we know all the successful treatments and may vary from individual to individual.
I also appreciate the gift of time and cherish every moment with my mom and make sure she gets the proper treatment and what to accept and not from the medical establishment.All the best to you and your family.
Kathy,
Glad that you feel well! Thank you for sharing your experience. I just joined the board because my sister-in-law in China was just diagnosed of ICC.
Sounds that pazopanib targets FGFR2 mutation (or FGFR2 fusion protein?). Is the the FGFR2 thing related to ICC or more NSCLC in your case?
Julian, Bosotn
Kathy…..thanks for checking in on us and sharing the wonderful news. You are stronger than the cancer and kicking and screaming resulted in keeping this cancer at bay. Wish there were not any side effects and hope it will diminish with time.
You are showing your children how to stand up and fight. Indeed, you are supermom.
Hugs
MarionKathy,
Thank you for checking in – stable is always great to hear. However, I am amazed that even without the CC, you have the energy to work full time with 3 young ones. You are a super woman.
Take care,
Catherine
Kathy,
What a fabulous update. So great to hear from you and with such awesome news. This will also give hope to others. Thanks so much for sharing this with all of us. Enjoy those kiddo’s of yours. You are all so blessed. Take care and keep the good news coming. Wishing you and your family many more amazing years to come.
Hugs,
DarlaHi All –
Just wanted to let you know that I’m still alive and kicking! For new folks, I was diagnosed in January 2015 with an enormous (20 pounds!) intrahepatic cholangiocarcinoma. I did pre-op chemo, had a resection in March 2015, followed by post-op chemo, and then was found to have lung mets in September 2015. I went into a clinical trial and failed in December 2015.
On December 31, 2015, I started pazopanib based on my tumor’s genetic profile while showed an FGFR2 mutation. This week, I had another stable scan! I still have “innumerable” small lung mets, but I have been stable on pazopanib for 13 months! The side effects are many and not fun (nausea, vomiting, diarrhea, muscle spasms, dry cough, dry/peely skin, white hair), but as we say in my house, they are better than the alternative!
I continue to work full time. My kids are growing up! My oldest will be 8 next month, and my twins are now 5. The gift of time is amazing! Keep fighting everyone!
Kathy
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