(5 replies, posted in Introductions!)

Dear Papawadsicle,

Welcome, and congratulations on shrinkage of tumors!!! It sounds like you have done your homework looking into targeted therapies. Please keep us informed as to what therapy you will be using and for what it will target. Hoping there will be surgery in your near future! Take care and please keep in touch.....hugs and prayers.

Dear Susan,

I would also like to welcome you here. Congratulations on 40% reduction! That is so inspiring! Please keep us posted of your results and details of your trial. I too have been in a trial for the past 3 years and always get so excited to hear of others doing well in other trials, because that just means more hope for the future of this disease!

I also hope you get a chance to meet up with the others in your area. There is such strength in numbers, and when you meet face to face it is such a strong connection that I feel it just adds so much power to your fight!

Keep in touch and take care.....hugs and prayers coming your way.


(226 replies, posted in Introductions!)


Hang in there, it is hard, I know, but you got this!! Take your nap, eat your protein and keep winning the war on this cc.....we are all here for you, cheering you on! Hugs, prayers and tons of good thoughts coming your way!


Welcome to the boards, we are so glad you are here. Thank you for posting you information and thank you for your participation in a clinical trial. Looking forward to seeing your progress! Praying for success, and little side effects for you! Positive thoughts, hugs and prayers headed your way!


(54 replies, posted in Clinical Trials)

Dear CC Family,

I have just returned from my 20 month post treatment check up at NIH. Things were great. Still seeing some slight shrinkage and when you compare scans from pretreatment to now, some tumors have even disappeared. I was also told that what is remaining is likely to be scar tissue. I will take that and run with it!!! Again, the best news is that this has all happened without any treatment for the past 20 months....only my immune system doing the work!

The best news this past week was that Lori, a fellow Cholangio patient, who had read my story last year and contacted me about trial information (actually her friend Ellen did) has just finished treatment.....and was also there for her fist checkup and scans. She received amazing news. Her tumors shrank up to 50% in just the first month!!!! This is absolutely HUGE news! I am posting with Lori's permission. I want you all to know that it was NOT an easy process for her. She had a difficult time with treatment and ended up in the ICU for 15 days. I am so happy to say it was not in vain. It was great to get to meet her face to face and share in her good news!

Some bits of important information that I learned back at NIH is that they are trying to speed up the process of being treated for this trial for patients who are currently being treated by "standard of care" chemotherapy and are interested in this clinical trial. Right now the treatment is typically at current 3-4 months past the stopping of current chemotherapy, they would like to start screening ahead of time. They said this would look more like a "consult".....not necessarily taking over patient care but consulting with current physician and preparing for when chemo stops working. Since my second treatment, and the discovery of the mutation reactive t-cells, I believe there have been 6 or 7 patients counting me and Lori, and about 16 patients in the process of being treated. This trial is opened up to many cancers and the link is found here http://www.cancer.gov/about-cancer/trea … d=11220695

This is the information that is requested and needs to be sent for them to evaluate:

- Recent History and Physical Exam  / most recent doctors progress notes and consult note 

- Recent Laboratory Results 

- Recent CT, MRI or PET scan report   
Please indicate if the checked information is included or is being sent separately

-Recent CT, MRI, or PET scan CD (disk)       

-Ten UNSTAINED Pathology slides (or tumor block in paraffin) 
Please send a tumor block or 10 unstained slides with tumor on them.

-Chemotherapy Records                         

-Radiation Therapy Records       

I hope this helps for anyone interested. Attached are some pictures of my scans, Lori, myself, and Charmin (another cholangio patient who just had her tumors removed and her cells are growing, she should get her cells in about 10 weeks) and Lori and I consuming our oral contrast before CT scans! Thanks so much for all your support, all my hugs and prayers to everyone!!





(5 replies, posted in Blogs)

So very awesome! Thanks for sharing your story!


Awesome news!! 25% shrinkage is huge!! I am so happy for you both. Please continue to keep us informed as to his progress, so hoping to see more trials available for others. Thank Mike for his participation in this trial. Looking forward to more good news!


(12 replies, posted in Good News / What's Working)

Awesome news Randi!! Keep up the good work and I agree with Kris .....you are a HERO!

I am so happy for you!!!! I love your beautiful attitude and the gracious way you share your story! Thank you for being a beacon of hope to others!

Awesome, wonderful, amazing news! Happy One Year!!! Live life and enjoy!


(6 replies, posted in Members' Cafe)

I absolutely love it Kris! What a special way to pay tribute, it is beautiful!

Hi Mary,

I am sorry to hear of your husband's struggle with drains, stents, infections, and mostly this diagnosis. I am glad you found this site and I hope you will continue to share your experiences as well as gather as much information as you need from here. Please know that I am sending good thoughts and prayers your way for both you and your husband. Take care.


(2 replies, posted in Introductions!)

Hi Christine,
Sorry, I am slow on my welcome, but I really do want to extend a big welcome to you. I know that you will find lots of good information and great support from this site. Please keep us updated as to how your second opinion turned out. Sending lots of good thoughts and prayers your way.

Thanks Gavin! I have been attending as many immunology sessions as possible! I heard at one session they will be opening more cohorts for the PD1 study in the next couple of months which will include cc patients.


(226 replies, posted in Introductions!)

Hi Matt,

Thanks for documenting your progress so well. Your experiences are so beneficial to so many. Glad you have your wound healing under control, and am even happier that you are making plans for blasting that tumor. Keep us posted with the results of your trip to Mayo....as always  you and your family are in my prayers. Sending hugs.


(19 replies, posted in Introductions!)

Dear Krassi,

I am so very sorry to hear about your sister. I am sending prayers for strength to get through this tough time. We are all here to support and help in anyway we can. Please know that we are here for you always. Hugs to you.


(9 replies, posted in General Discussion)


What amazing news!! I am so happy for you and your husband!! I believe in miracles......Everyday holds a possibility of a miracle.....and you just showed proof of that!!


(11 replies, posted in General Discussion)

Dear Mootnje,

Love to hear that you are kicking some cancer *$#!!!! Sending great thoughts and lots of prayers for great scan results. Keep us posted and thanks for sharing!


(12 replies, posted in Good News / What's Working)


Such wonderful news on your scan! Congratulations on your 4 year milestone!!! So sorry about your miscarriage. I am happy to hear that you have such a positive attitude and continue to look forward to a wonderful future! Hugs to you!

Love it!


(7 replies, posted in In Remembrance)

Dear Aiste,

I am so very sorry for the loss of your father. I want you to know that I am saying prayers for you and your family for strength, peace and comfort. Hugs coming your way.


(91 replies, posted in Introductions!)

Dear Aiste,

Sending prayers your way for peace, comfort and strength. Big hugs to you. I am so sorry.



(5 replies, posted in Introductions!)

I would like to welcome you to this site as well. Glad you are here but sorry you have to be. We are all here to support each other however we can. Please keep us updated on all your progress and let us know if there is anything we can do to help. Sending prayers your way!

Dear Christian,
I too, am sorry to hear of your mother's passing. I am glad that she did not have much pain in the end, and I am happy you were able to spend this time with her. Thanks for the information about dehydration and the knowledge you shared to help others. Sending prayers your way for peace, strength, and  comfort for you and your family.

Awesome news!!! Stable is so good! Thank you so much for contributing to this research and being involved in this trial so we can have more options for our futures! Keep up the good work.

I still have swelling in my feet as well.....I think it is due to the neuropathy from all the chemo. I love my sandals as well but by the end of the day I have sausages for toes!!

Hugs to you,