Holiday Update 2017
- This topic has 5 replies, 5 voices, and was last updated 7 years ago by
.
-
Posts
-
Wow, Kathy, your attitude is awe-inspiring. I have to think that kind of positivity will carry you a long way. I hope that you and your family have a wonderful holiday.
debbie
Everyone was very pleased with my Votrient (pazopanib) response. After brain mets, I had a liquid biopsy done of my blood to see if I had developed any new, druggable mutations. Sadly, still just my FGFR2 mutation, so the tumor board here came up with the lenvatinib plan. No one knows if it will work, but there’s nothing else, so away we go.
The brain mets are interesting. They are so rare that I certainly had never had any head imaging until my seizure. Everyone here is radiation oncology is quite certain that they’ve never treated cholangio brain mets before. That being said, we’re moving along.
Everyone here understands that I know I’m going to die, but I’m just trying to get as much quality time as possible with my kids. Whatever it takes. When I can’t read with them, do homework with them, watch TV with them, then we’re done. Until then, keep on, keepin’ on!
Kathy
Kathy,
Thank you for letting us know how you are doing. It is great to hear that despite some bumps in the road, you are moving forward with treatments. Fingers crossed the new FGFR inhibitor will give you another long run of stable health.
Your lengthy response to Votrient (pazopanib) was quite a good result. I don’t recall anyone previously posting that they are being treated with lenvatinib (do I have the generic name correct?). Please let us know how things go with this treatment.
Brain mets are not fun. The medical literature says they are “extremely rare” for cholangiocarcinoma but on this board, patients have reported them. My understanding is they can be more of a risk (still a slight risk) for longer-term survivors. I wonder about the surveillance aspect of this. We get periodically scanned from chest to pelvis but I don’t think doctors systematically look out for brain mets unless there are symptoms.
I hope you and your family enjoyed the Thanksgiving weekend and have great plans for the upcoming holiday season.
Take care, regards, Mary
Hi All –
I just wanted to stop by with an update on my condition. For the newbies, a brief introduction – I was diagnosed in January 2015 at 43 years old with stage IV intrahepatic cholangiocarcinoma. I have three small children; now less small than when we started this journey! I did initial chemo with Gem/Cis before a resection in March 2015 where they removed a 20 pound tumor from my liver! While I had clean margins, I did have positive nodes, so we did post-OR chemo with Xeloda and oxaliplatin. Fall of 2015 brought lung mets and my enrollment in a clinical trial. I failed the clinical trial, and the mets were growing like gangbusters. Based on my Foundation One testing, my oncologist put me on Votrient because I had an FGFR2 mutation. And it worked. I was relatively stable from January 2016 until August 2017. In August 2017, I had a grand mal seizure and was found to have 23 brain mets. I had gamma knife surgery and have been recovering. However, it was clear the Votrient was losing its effectiveness. Late October’s followup scans showed good response to gamma knife but more new brain mets. So, our new plan was whole brain radiation and a switch from Votrient to Lenvamir – another FGFR2 inhibitor with a different mechanism of action.
Well, halfway through my whole brain radiation last week, I became acutely short of breath and had to get admitted. My new CT scan shows extensive lymphatic spread in the lungs which apparently can cause a lot of inflammation in the lungs. So, I am discharged again now on steroids and home oxygen. I complete my radiation today, and I will start the Lenvamir on Wednesday. The hope is to get the inflammation calmed down and slow the spread. My care team isn’t giving up on me yet, and I’m not either. I’ve gotten ever so much more time than I was predicted to have in the beginning. My kids are bigger now (oldest is now 8 and then I have 6 year old twins). I’m still working and productive.
So, everyone go have a great holiday season and kick cholangiocarcinoma in the you know where!
Kathy
- The forum ‘General Discussion’ is closed to new topics and replies.