middlesister1

Hi,

Below is a link for a thread discussing “hints’ for chemo:

http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=13069

My mother was diagnosed in Oct 2013 and had 3 cycles of Gem/Cis, and then after it was over, she had the radioactive sphere treatment (Y-90/ SIRT). Although we were still stable 9 months after the Y-90, we opted to do it again but this time they gave her chemo for 2 weeks before and two weeks after the treatment (this time xeloda- a pill form of chemo). We were told that the chemo makes the tumor more receptive to the radiation.

That was in Nov. 2014. Since then, all CT and PET scans have shown No Evidence of Disease (dead tumor). We go back in March for another scan, and hope that nothing has started to grow again. We are so lucky to have all this treatment-free time. I hope your wife’s treatment combo is as successful. What type of radiation is she having?

Best wishes,
Catherine

David,

Very sorry to hear to results and what you went through, but hoping the next path is successful. With the IV troubles, have they offered a port? If your next line of treatment is chemo, it’s something you might want to consider. Even with Mom in remission, there’s still blood and scans every 3 months, so the port is still a big relief for her to have. Unfortunately the chemo damages veins, so in hind sight we wish Mom had her port put in much sooner.

best wishes,
Catherine

Dear Lise,
I am so sorry for the loss of your daughter. So many here are patients , siblings or spouses. My heart especially breaks whenever I hear of someone losing a child.

I hope that in time some of the grief can be lessened a bit with happy memories. Until then, please know that my thoughts, prayers, and heartfelt condolences are with you.

we are here for you.

Catherine

Cindy,

Thank you for sharing your participation with the trial. I wish you the best that the side effects subside but the healing keeps working.

And, I also appreciate you sharing that you are a patient who wasn’t able to have surgery but still here to give others hope years later. My mother is also more than 2 years since diagnosis and doing well; when people join our board, a bit of hope is often what they need to see.

Take care,
Catherine

Thanks Lainy-

We meet with ONC today. So far Dad has had 6 brain radiation rounds with 4 more to go. Hoping that they don’t say today that it’s too far spread to bother with chemo. He started having a cough, so we are concerned with waiting for another week or two to start (primary is small cell lung).

Take care,
Catherine

Ashley,
Thank you for sharing the information. There are so many who benefit from this information even if they never join in the discussion. When Mom was in chemo, it was heartbreaking to see young people getting treatments.

I hope to hear that Tom is one of our future success stories- best wishes to you both-

Catherine

Hi Bridgitte,

When Mom did chemo, the steroids were wonderful for keeping the side effects in control. However, Dad was just on steroids after brain surgery, and the reflux he had kept him in constant pain for days. Even prescription meds combined with OTC couldn’t relieve it until he was off the steroids. I’m starting to look into coated steroids- I heard they do exist, so will be bring this up to his ONC for when he starts chemo.

I’m happy to hear chemo is going pretty well so far- we’re all hoping to hear of great success.

Best wishes,
Catherine

Ashely-

I’m very excited for you and Tom. Best wished for huge success with the trial. Looking forward to hearing encouraging results!!!!!

Take care,
Catherine