mbachini

Genevieve,

That is wonderful news! I am so happy for you both! So hopeful to so many! Thank you!
Melinda

What a beautiful tribute to your sister, I am so sorry for your loss. I wish you didn’t have to understand some of the things she went through, but helping your sister I am sure has made a difference in your journey with cc. Thanks for sharing.
Melinda

Molly,

Thanks for sharing your story, and I LOVE the attitude! I am so glad that you have had no progression this past year. As for genetic profiling I would recommend getting it done as soon as possible, especially if they can obtain a tissue biopsy without difficulty. Otherwise, there is always the blood biopsy option…..some of the reasons why would be to find out if you possibly are in the 5-10% that are MSI-HIGH or mismatch repair deficient and could benefit from the use of immunotherapy. As Catherine stated, it is always best to be thinking of plan B for down the road. Fortunately, we are starting to see more clinical trials with a targeted therapy geared towards some of the more common cholangiocarcinoma mutations. Below are some links that I thought might be of help. All my best.

Melinda

https://directorsblog.nih.gov/2017/06/20/precision-oncology-gene-changes-predict-immunotherapy-response/

http://journals.sagepub.com/doi/full/10.1177/1756283X17698090

http://www.onclive.com/web-exclusives/fda-approves-pembrolizumab-for-microsatellite-instabilityhigh-and-mismatch-repair-deficient-cancers

https://www.cancer.gov/news-events/cancer-currents-blog/2016/asco-liquid-biopsy

Dear Helen,

Here is a link to a clinical trial for Keytruda with a location in the Netherlands.

https://clinicaltrials.gov/ct2/show/study/NCT02628067?term=bile+duct+cancer&show_locs=Y#locn

Melinda

Dear Jack,

Welcome to this incredible family of amazing patients and caregivers from all over the world. I am sorry you had to join us, but please know you are NOT alone.

Second opinions are always warranted with this disease, and at times sometimes three or more. I don’t know if you had genetic profiling done on tumor samples yet, but that is imperative to get done asap. If they were done, the treatment with the PI3k inhibitor may be chosen because of those results. I found the following article from this year’s ASCO conference discussing the PI3k pathways, I hope it helps.
https://am.asco.org/exploring-pathway-despite-lukewarm-clinical-benefit-pi3k-inhibitors-optimism-remains-regarding

Please keep us posted and don’t hesitate to ask questions.

All my best,
Melinda

Dear Patti,

What a wonderful report on the PET scan!! NO metabolic reactivity! NO mets!! Now, to me that is a reason to celebrate! I propose that you and your husband make it to the annual Cholangiocarcinoma Foundation Conference in February 2018, and we will celebrate that the docs got it all wrong!!! All my best to you both! Love and hugs……Melinda

Very happy to hear no spread and one responded to TACE. I understand the disappointment, that is normal….but the GOOD new far outweighs the bad. Hang in there and know we are cheering for you.
Melinda