1

(7 replies, posted in General Discussion)

Catherine,

I am so sorry to hear of the recurrence for your mother. My recurrence was in my lungs, not my liver, three months after my resection.  I would definitely push for the completer removal of the floating tumor, especially since it is the only one. Please keep us posted. You both will be in my thoughts and prayers.

All my best,
Melinda

Kathy,
Thank you for the information. Please pass on any further information that you feel will be helpful to others. I am so happy it has taken some burden off of you financially. All my best, Melinda

3

(28 replies, posted in Introductions!)

April,

I loved reading your update! Such wonderful news and hope for others. I am so happy for you and your children. Please keep us updated on next scans and I will keep you in my prayers for continued healing!
All my best to you, hugs and prayers!
Melinda

I would love to get some feedback from anybody enrolled in this trial. Please post on this thread your experiences, side effects and results so we can share with other patients and caregivers. Thanks so much!

Melinda

5

(21 replies, posted in Clinical Trials)

Yes, Kim, Great news! So happy for you and Rich! Please keep us posted with results of this trial and any other information you would be willing to share about it. Many thanks!
Melinda

Genevieve,

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

Molly,

Being that I am a very HOPE FILLED Montanan, I love the reference to the book you are reading, I will be getting my copy today!

I will hit my eight year mark of stage IV Intrahepatic Cholangiocarcinoma on December 1st this year. I am so thankful for the clinical trial of Adoptive Cell Therapy with Dr. Rosenberg which has extended my life hopefully for many years to come!

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

Susie,

Congratulations on six years cancer free!! What great news and hope for all!

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/2017/06/2 … -response/

http://journals.sagepub.com/doi/full/10 … 3X17698090

http://www.onclive.com/web-exclusives/f … nt-cancers


https://www.cancer.gov/news-events/canc … uid-biopsy

Just wanted to let you know or remind you to watch the First In Human series on Discovery Channel that airs on Thursday the 10th. Dr. Rosenberg and Dr. Stephanie Goff are two of my doctors out at NIH and will be talking about the TIL treatment or Adoptive Cell Therapy that has made such a huge difference in my survival of cholangiocarcinoma! Amazing people, amazing research!
Melinda
https://ccr.cancer.gov/news/first-in-hu … =eb_govdel

12

(6 replies, posted in Chemotherapy)

Dear Helen,

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

https://clinicaltrials.gov/ct2/show/stu … ocs=Y#locn

Melinda

13

(1 replies, posted in Survivor Stories -->[NEW]<--)

Wonderful survivor story Celia!

14

(14 replies, posted in Introductions!)

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-d … -regarding

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

All my best,
Melinda

15

(5 replies, posted in Introductions!)

Dear Celia,

Congratulations on over 3 years of doing great!! Many more to come......thank you for spreading hope and encouragement to others. I have family in Portland and Salem, I love to visit Oregon. Thanks for joining the discussion board and look forward to hearing more from you.
All my best,
Melinda

16

(16 replies, posted in Survivor Stories -->[NEW]<--)

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

17

(23 replies, posted in In Remembrance)

Dear Nancy,

I am hoping therapy will help ease some of your pain and bring you through such a difficult loss, 8 months is still a short time for grieving, take care of your self, as I know from a mother's stand point that is what I would want for my children.  Love and hugs to you....Melinda

18

(5 replies, posted in General Discussion)

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

19

(11 replies, posted in General Discussion)

Hi Kim,

I did/do have metastasis to the lungs. Prior to immunotherapy treatment the tumors in my liver and lungs responded differently to chemo treatments. I would agree that most likely they are metastasis to the lungs.

Melinda

Dear Hopeseeker,

I am hoping her platelets will rebound with the lapse in chemo. I am more concerned that she is experiencing pain and having a hard time controlling it with meds. If there is a palliative care team available at her clinic, I would suggest they be consulted to help with this issue. If pain continues to get worse, I would also push for an earlier scan to find out exactly why the pain is worsening. Hoping for improvement.

Melinda

21

(38 replies, posted in Introductions!)

Dear Hopeful,

I have asked Karen our moderator to respond on this subject, as I know she has some good resources related to cachexia, nutrition and palliative care. I am sorry this is such a hard time for both of you.  Sending all good thoughts your way......Melinda

Thank you Beatriz for posting the video!

That's my doctor! I adore this man......"patients deserve an optimistic doctor"  and he is that. I can tell you that  after my first initial treatment......they had discovered that one of my t-cells was mutation reactive to my ERBB2IP mutation.....he came to my bedside, and his excitement was so contagious that I couldn't wait to get started on another treatment, and trust me the treatment isn't easy, but was so worth it!!!
This picture was taken in June, when we told my story to nine senators at NIH to show the importance of research funding.   Melinda

https://s4.postimg.org/zeg4lgo3d/20170605_olpa_senators-0213.jpg

I am excited to watch this, I have been hearing about it all year. I look forward to seeing Dr. Rosenberg, Dr. Goff and some of the awesome staff that cared for me the past five years I have been a patient at NIH. It truly is an amazing place! I remember an amazing research scientist told me one day with tears in his eyes that they learn from all the patients, not just the success stories. He was grateful for the patients who chose to participate in clinical trials and advance research.

Melinda

Julie,

I just want you to know you are in my thoughts and prayers. Going to hold on to the good news of No Evidence of CC......all my best.

Melinda