knfarrow
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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
Hi SpokaneMom –
My oncologist had them do the Foundation One genetic profile on my tumor after my surgical resection. So glad she did!
Kathy
Not sure if this is the right place to post an update, but I’ll start here. I had my repeat scan and CA19-9 done last week, and I got the results today. They are not good sadly. When I was diagnosed in January, I had several small lung nodules (2 mm) – too small to biopsy. However, they stayed stable over my scans in March (pre-op) and May (post-op), so we were hoping that they were not mets. However, last week’s scan shows several have grown, and there are several new ones. The largest is now 9 mm. There are multiple nodules in both lungs, so surgery is not an option. Radiation is not an option because it would damage the surrounding healthy lung tissue.
SO, if there can be any good news, there’s no recurrence in my remaining liver or anywhere in the abdomen, and my CA 19-9 remains low at 40 (pre-op was >1000). My tumor had an FGFR2 mutation, so my oncologist is trying to get me into a stage II trial of ponatinib, an FGFR inhibitor. Apparently, they are a site for the trial. I should know if I can get into the trial in the next few days. If not, then they are going to treat me with another FGFR2 inhibitor off trial – pazopanib. I’m going to go over to the other boards and see what folks are saying about the side effects. I’m desperate to buy time for my kids, but I also don’t want to feel so awful that we can’t enjoy our time.
I hate this disease. Given the size of my tumor at presentation and everything I’ve read, I knew this was coming, but I really wanted a different answer. I desperately wanted more time for my kids. All I can do at this point is try to make the most of the time I have and make sure that everything is in order for them for after.
Thanks for listening,
Kathy
Thanks so much for posting! I was diagnosed with a very large tumor in January 2015. I’m about to get results from my scan 6 months post-op tomorrow morning. I know that my chances of truly beating this are almost zero, but I’m hoping to get as much time as possible as my kids are very young (oldest is 6, and I have 4 year old twins). SO, hearing stories like your mom’s give me hope that maybe I can get my kids bigger before this awful disease takes me. Thank you, thank you for giving me this hope tonight. I needed it.
Just finished cycle four of chemo. I’m now on a break. My oncologist wants me to have a break for a few weeks since we’ve been at it hard since January – chemo, surgery, post-op complications, and more chemo. I will get scanned and tumor markers drawn on September 29, and then I’ll see my oncologist for results on October 5. I’ll just try not to go crazy in the meantime. I’m glad to have made it this far and to be feeling so much better. I’m just scared of the elephant in the room.
Just an update since people asked. I’m in cycle three of oxaliplatin and xeloda. One more cycle before my repeat scan. I’ve had a fair bit of cold sensitivity and neuropathy but much less nausea than with the gem/cis. I’m working full days and physical therapy continues to go well. Work is good for me because it lets me “forget” about things for awhile. I struggle the most emotionally when I’m with my kids. I love that I can do so much more with them again – almost back to normal really. But I tend to get really emotional once they’ve gone to bed at night because I get stuck thinking about all things I’ll miss if this tumor wins. My kids are little (6 years old and 4 year old twins). So, that’s where I’m at these days. Better go do my PT for the night!
I’m on my third cycle of xeloda and oxaliplatin. With my cold sensitivity, I get numbness and tingling in my mouth with the air conditioning. We just keep the house at about 75 on those days, and I work from home. It goes away day 5-6 for me. I also get muscle spasms and some hand and feet tingling for the first week. MUCH less nausea than I had with gem/cis, so that’s good. Good luck with it!
Patty – thank you for this encouraging news. I also have an FGFR2 mutation in my tumor, so my oncologist made me aware of this trial. Right now, post-surgery, on my last scan in May, I had no tumor left. So, I’m not eligible for the trial currently. However, as she put it, it’s good to know that this is an option if we need it. Good luck to you, and I hope that the drug continues to work so well for you!
Kathy
Jessica-
My oncologist recently told me that I’m “off the books”. I’m young. I managed to have a successful resection even though my tumor was quite large. SO, she is quite literally making up a plan for me and hoping for a win! That’s the best we can do.
Try to stay positive and focus on those adorable little people!
Kathy
Just finished my first cycle of post-op chemo with oxaliplatin and Xeloda. It went much better than my Gem/Cis chemo when I was first diagnosed, but I suspect that’s because I’m in much better shape physically this time now that the tumor is out. Otherwise, physical therapy is going well, and I’m back to work. My oncologist wants to do three more cycles before re-scanning and repeating a CA 19-9 (mid-September). My last scans in May were clear and my CA 19-9 was normal then. Here’s hoping they stay that way!
Kathy
I’m sorry that you have CC, but glad for you that they found it when it was small and got it out! I also have little children – a 6 year old and 4 year old twins. I am fighting this battle for them. At least for me, it’s better when I focus on them and being the best mommy I can be! Good luck with your recovery.
Kathy
Hi Diane-
I wish you luck with the trial. I’m in my 40s with little kids. I had clean margins at surgery but three positive lymph nodes (rest were negative), so I’m currently doing chemo with oxaliplatin and xeloda. I hope your new drug has minimal side effects and knocks your tumor out! We do all we can do and hope for the best!
Kathy
Congratulations on your good surgery! I had my surgery at the end of March and am about to start post-surgery chemo. My tumor also did not respond to cisplatin and gemcitibine initially. My oncologist has chosen oxaliplatin and xeloda for my post-surgical regimen. Give me a couple of weeks, and I’ll tell you how it’s going!
Kathy
Sorry I didn’t answer your questions. I started with chemo first (Cisplatin/Gemzar) because my tumor was so big, and I was so sick they thought I wouldn’t survive surgery. I actually got clinically better on chemo, and we forged forward with surgery. Radiation has been mentioned in passing, but it has never been at the forefront of our discussions.
Good luck!
Kathy
Hi Jenny –
I am so sorry to hear about your mom. I see you are waiting to be seen at Northwestern in Chicago. That’s where I have gotten my care for cholangiocarcinoma. I was diagnosed in January, had surgery in March, and am about to start my post-op chemo (had clean margins on the tumor but three positive nodes).
Anyway, I have a couple of amazing doctors at Northwestern – Dr. Mary Mulcahy is my oncologist and Dr. Talia Baker was my surgeon. They have worked miracles with me.
Good luck!
Kathy
