(309 replies, posted in Introductions!)

Awesome news Matt! See you next week!


(10 replies, posted in General Discussion)

Hi Donna!
Welcome to the discussion board and I am so very glad you are here! I have no idea what magazine article you read my story in, but I am so happy you did and it led you here!!

What a road you have already traveled. I already know you are strong, determined and full of courage to have gone through so much. Please keep us updated with your progress, and know we are all here to support and help in any way we can! Hugs and prayers sent to you.


(12 replies, posted in General Discussion)

So happy to hear the great update and that all is well.....this place just isn't the same without you Lainy! Keep up the good work and continue healing! Love and hugs!

Congratulations on your 10th anniversary! How awesome that is. I hope you celebrated this milestone with something special. Thanks so much for the HOPE this brings to so many! Here's to the next 10 ...may they be full of life and happiness.....all my best.


What a great update from mamma Wong! I am beyond happy for her and your family. NED is a great friend to have. Praying this treatment will soon be more available to others with just as good of results.

Tell Rose to continue to enjoy life, and especially those twins!

Love and hugs,

Hi Steven,
Thanks for the update on your mom. Sorry for the conflicting results.....happy for the good news, but darn the pesky spots on the lungs!!

This is definitely not clinical.....but when I had a bad cough from my lung tumors.......orange tic tacs gave me the most relief!!!

Sending prayers and hugs!


(2 replies, posted in Announcements)

I had the pleasure of again working alongside Marion this past week at the GI ASCO conference in San Francisco. There was a lot of behind the scenes work being done to benefit the fight to CURE Cholangiocarcinoma from staff, board members, medical advisory and nursing advisory members. I can't say enough about how fortunate we are to have so many amazing, brilliant and dedicated people working on behalf of patients like you and me and our caregivers.

I am so looking forward to the Annual Conference coming up next week in Salt Lake City! I can't wait to meet fellow patients and caregivers, and to feel the hope that is inspired in a room full of physicians and researchers who are focusing on cholangiocarcinoma!  Hope to see many of you there!

Here is a picture of Donna Mayer our Executive Director, Marion our amazing Chief Advocacy Officer and me!


Dear Ashley,

Thank you and thank Tom for me. I appreciate your willingness to participate in a trial. My attitude was and still is at this point, "I have nothing to lose, and everything to gain!" ......that is just how I felt when I entered into the clinical trial. ....being stage IV, and having gone through so many treatments. Please keep us updated and I look forward to hearing great results!



(309 replies, posted in Introductions!)

Hi Matt,

Didn't you say you threw up during your MRI?? Maybe it is an infection, bug you are fighting??? Looking forward to repeat labs this week with all normal results!!! smile



(4 replies, posted in General Discussion)

Sending huge hugs and many prayers! So looking forward to meeting you in person in a few weeks at the conference!

Please send your husband my best, and tell him to hang in there. Each day should  get better, and I understand how emotional it can be sometimes,we all do. We are here for your support as well! Please keep us posted. Hugs and prayers.

Dear Jacdoll,

OK, this is just my opinion only, but I say go for the trial! One of my biggest gripes is that we have to fail a chemo regimen before we can enter a trial. I feel that if we are wanting to try a trial that we would be stronger going into it if we had not already beaten down our bodies with a chemo regimen.

Now, an exception for me would be to do a chemo regimen in order to shrink tumor to have it surgically removed. If that is a possibility and there are no mets, then I would do it in hopes to gain surgery.

I was diagnosed at age 41, that was 6 years ago. I had liver resection with recurrence 3 months later to my lungs. I was then labeled stage IV terminal.  I wanted to immediately start a trial, but couldn't for insurance reasons at that time. I then did Gem/Cis for 6 months with horrible side effects, did Gem alone with growth of tumors, did Taxotere with horrible side effects. Four years ago, I entered into a clinical trial at NIH. I have had great success, but wish I could have skipped the first 2 years of chemo.

This is my opinion only, but I believe the treatments to come are going to be the game changers in this disease, and we wont't have them until trials are available and patients are participating. I feel strongly about new options for all of us, and have high HOPE for what is to come.

Best wishes for your decisions, and know that whatever route you two go, we are all here to support and cheer you on! Prayers and hugs to you!



(15 replies, posted in Introductions!)


I would also like to thank you for posting your story and welcome you to the discussion board. There is such strength in numbers. I am so happy for you and your progress. I also admire your strong faith. That is my source of strength as well! Sending prayers for your continued good health.



(70 replies, posted in Clinical Trials)


Technically by RECIST criteria measurement, criteria of the trial, I have not yet shown progression of disease.  In fact, with the way the measurements are....there was no change.

My husband asked that question to one of the team members, why not just start the pembrolizumab right now,  and he said he thought that would be a good idea, but I don't think it was brought up again with the rest of the team. I will definitely shoot off an email in the morning to find out why.



(23 replies, posted in General Discussion)

Dearest Lainy,

You are one tough cookie! I just know you will come through this operation with flying colors. I will miss your posts while you are healing, and look forward to updates from your daughter. Sending prayers now and will continue to pray for you and your surgeons. Take care, love and hugs sent your way.


I did Gem/Cis for 6 months with stable results, but horrible neuropathy developed as well as hearing loss after that time frame.  Each of us handle it differently, take it one treatment at a time and let your doc know of any troubles right away. Take care, and keep us posted. You got this!


(45 replies, posted in Members' Cafe)

Dear Catherine,

I just want you to know that I am saying prayers for you, your hubby, your mom and your dad. I pray that all works out for your father and his treatment is tolerable and effective. I pray that he will have many more years with you and your family.

I also want to say how much I admire you. I love your strength, courage and determination. I also admire your dedication to this discussion board. With all you have gone through you are always here to encourage and help others. Thank you so much.



Sending prayers for you and your mom that scan results are more than positive! Hugs to you both!


(70 replies, posted in Clinical Trials)

Dear CC Family,

I just returned from NIH, where I had a PET scan, CT scans and MRI, along with blood work. It has been 27 months since my treatment. I have had NO other treatments in that time frame. My tumors have shrunk incredibly in that time.

While I was hoping that this month's scans would show more shrinkage or proof of just scar tissue remaining, that was not the case. My results by criteria of the trial were STABLE, which is GREAT! Unfortunately, the PET scan showed increased uptake in a handful of tumors in my lungs, except one, which showed no uptake at all! By eye they also felt that a few lung tumors were a bit plumper in my lungs. These results leave us wondering if this monster could be on the rise again. I will return in 3 months and depending on scans then, we will form a plan of action. It is also important for me to note that the spots on my liver had no uptake of glucose as well on the PET, which is also GREAT.

So all in all, these are great results. I can't deny that my heart sank a bit at first but I know that what has been accomplished in 27 months is amazing , wonderful and miraculous!!!

They have added to the treatment the drug pembrolizumab. They feel that this could increase the response to the mutation reactive t-cells. So if worse comes to worse, I will most likely do the treatment again with this addition, but for now it is a wait and see.

I still hold so much hope for the future treatments coming our way. Hang in there, good things happening.

All my best,


(6 replies, posted in In Remembrance)

I wish to express my deepest sympathy for the loss of your wife. Praying for peace, strength and comfort for you and your family. Hugs to you.


(4 replies, posted in General Discussion)

Hi Frank,

I also have mets to my lungs and did gem/cis for about 6 months with stable disease. I continued on the gem/cis regimen until the toxicity was too much to handle. I have severe neuropathy in my feet, lower legs and hands. I also have some hearing damage.  That was five years ago. Thanks to a clinical trial and a new immunotherapy approach , I am doing great today. I agree with Marion that I am sure they will want to stick to this treatment for as long as it is working. Keep your eye open for the targeted therapies for any results of the molecular testing for a plan B. Hang in there and give your wife a hug for me!



I am so sorry to hear this news, but agree with you about this being a success. Two and a half years is nothing to scoff at. You keep those big girl panties pulled up and stay positive, there is more to come for treatment and new breakthroughs everyday!! Thinking of you and sending lots of hugs your way!

Thank you, thank you, thank you!!!!!! I am so happy and proud of the great work you have done and continue to do!!! From the bottom of my heart.....thank you.


(8 replies, posted in Grief Management)

Dear Surfer,

I am so deeply sorry for the loss of your husband. Sending prayers for peace, comfort and strength for you and your family.



(37 replies, posted in General Discussion)


So happy everything went well, Merry Christmas to you, best present EVER!!
Hugs and prayers,