April 17, 2019 at 9:11 pm #98465
Thanks for sharing. It’s hard to explain why there is mixed response. There is one way used by some doctor, which is combined Chemo and Immunotherapy. It has good response on some patients.
Our doctor, however, recommends target therapy clinical trial, A166 or NCT02892123, he said there are 5 patients have good response from NCT02892123. You might want to check it out.
Otherwise, follow Gem/Cis/Abraxane as standard chemo treatment this time.April 17, 2019 at 8:40 pm #98464Pfdlsd83Participant
My husband has the amplification of the pathway and was in the trial that used herceptin and perjeta. He was in the trial 8 months. The 2 lesions on the liver remained stable but the one on the abdominal wall grew 20% and forced him from the trial. He was another trial after that ,immunotherapy, which shrunk the tumor on the wall but the liver lesions grew. Currently on chemo gemcitabin and abraxane.April 16, 2019 at 12:07 pm #98457
Thanks Mary for always support there.
I was checking that out too Perjeta. One friend shared the same treatment in the past combined with Perjeta and Herceptin and they don’t work either.. That’s why I am looking for a different path – immunotherapy …One iCCA patient got complete response for almost 3 years by Keytruda. It’s really promising. She didn’t get PD-L1 tested before getting Keytruda.April 16, 2019 at 11:58 am #98456bglassModerator
I am sorry you are not finding others on the board dealing with the HER-2 mutation. With a rare defect combined with a rare cancer, the size of the community is very small, just one of many frustrations with this cancer.
Re the HER-2, I was looking around in the medical articles and there is another treatment, similar to and sometimes used together with Herceptin, which is Perjeta (pertuzumab). This is something you could ask about if you have not encountered it already. Not being a doctor, I do not know if this would be considered for cholangiocarcinoma or not.
Re PD-L1 targeted treatment options for patients with HER-2, I have not found any information for you but will keep looking.
Regards, MaryApril 16, 2019 at 9:12 am #98455
Hi I am looking for PD-1/PD-L1 options.. Is anyone out there with HER2 amplification having response to this treatment?
Carrot(s)April 8, 2019 at 10:32 am #98419
It seems Herceptin can’t control. In the recent CT scan 4/4/2019, there is 1 lymph node enlarged and 1 new lymph node found in Liver and 1 nodule enlarged in the lung. The GemCap protocol only works for 6 months and it’s back after 4 months once the treatment stopped. We feel so heartbroken to see the result as my husband is such a fighter. Exercise, change diet to all natural/organic with most veggie.. It’s hard on him as he is a meat-lover lacking of exercises. He is feeling very well, healthier than me, I am so happy for him, but we got huge impact by the result and very much lost now, don’t know what else we can do…
I have started NCI screening this time but the successful rate I heard is not so optimism. Other than that, does anyone have recommendation for treatment option on his case? He is having ERBB2/HER2 amplification, PD-L1 negative with MSS: (
February 15, 2019 at 8:28 am #98160
- This reply was modified 6 months, 2 weeks ago by Carrot2018.
Just to update all, my husband is not eligible for this trial as he has no metastatic lesion, plus the trial needs tumor to grow cell, and they don’t accept the tumor resected in the past (even it’s saved in the lab).February 14, 2019 at 10:53 am #98157
Hello Melinda –
Thank you for the prompt response! You are one of many hopes and role models out there for this type of disease. I wanted to reach out but didn’t know your nickname on this forum so very much happy to hear from you!!
Thank you for sharing experience and updates. It’s glad to hear that the scientists keep working on to make improvement! I have wrote them email and briefly list the information. Hope to hear back from them soon. It seems that they are the only lab conducting this type of trial worldwide and glad it works on you!!
February 14, 2019 at 10:30 am #98156mbachiniModerator
- This reply was modified 8 months, 1 week ago by Carrot2018. Reason: typo
NCI is still accepting patients for adoptive cell treatment, but unfortunately, there still have only been about 5 successful treatments, and not any of the others were cholangiocarcinoma patients. You have to remember that for this treatment it is not about the type of cancer you have but more about your immune system and if you have mutation reactive t-cells that can successfully target tumors. They have amended this trial several times since I was the firs to have a response in this trial. For some reason, my mutation reactive t-cells live in my circulation longer than other people. The last I have heard is that they are now taking these mutation reactive t-cell receptors (about 90% of people have at least one reactivity) and engineering them in the lab by placing that receptor on younger, healthier t-cells in hopes that they survive longer in circulation to find and kill the tumors. It is always worth a call out to NCI and start the screening process, as it is a long treatment process. You first have to have enough tumor to remove surgically to harvest the t-cells and test against mutations, and then it is about a 3 month waiting period before you actually receive the cells. They try and work with your doc to continue some kind of treatment during that time frame. I hope this helps. Please don’t hesitate to reach out if you have more questions. All my best!
MelindaFebruary 13, 2019 at 8:34 am #98152gavinModerator
Will keep my fingers crossed for you Carrot! Good luck with everything and let us know how it all goes.
GavinFebruary 13, 2019 at 5:49 am #98148
Thanks Gavin and vtkb! That’s quick! I was able to check it out and will reach out to them soon. Hope to have some positive news: )
Carrot(s)February 12, 2019 at 7:48 pm #98147vtkbParticipant
Try this website: https://ccr.cancer.gov/Surgery-Branch
I believe the trial is still open, if you fit their criteria. Kathy was rejected (because she has UC) but we had originally reached out via email with her story and they got back to us in a timely manner. There should be a link on the website above with the clinical trials at NIHFebruary 12, 2019 at 3:41 pm #98145gavinModerator
I will try and find out about this for you and get back to you on this. Will get in touch with Melinda as well.
GavinFebruary 12, 2019 at 2:21 pm #98140
Just noticed the feedback from you that I didn’t response. Sorry and thank you for sharing. I was reading pathway clinical trial IIa result and found all old info (PR and SD most time in iCCA). Thanks for the update.
My husband is just done with GemCap and continue to take herceptin for a year. I am exploring more options, it seems Melinda Bachini was successfully treated by NCI adoptive cell therapy. I was wondering if anyone considers and tries that. Is that trial still accepting patient?
CarrotsSeptember 16, 2018 at 3:28 pm #97509Pfdlsd83Participant
Hello My husband was diagnosed in May 2017 with recurrent cholangiocarcinoma. He was in a clinical trial that used herceptin and perjeta. He has am amplification of a pathway. He began in Nov. 2017. During the trial 2 tumors on the liver remained stable or slightly decreased however the one on the abdominal wall remained stable until a few months ago. By end July it had increased 20%. That excluded him from the trial. He tolerated the side effect fairly well. Fatigue and pain were the biggest side effect and lack of appetite . He is currently in a new trial, phase 1, using a brand new immunotherapy drug. It is a Bispecific DART Protein Binding PD-1 and LAG3. He is being treated at Johns Hopkins.
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