Carrot2018
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Hello. Just wanted to update my HER2+ husband stayed on clinical trial ZW25 for about 12 weeks and another clinical trial A166 for 9 weeks.
He remained stable on ZW25 for 8 weeks and grew 20% in September, exit ZW25 and went for A166 for 9 weeks. A166 doesn’t work on him at all so he exit that trial. ZW25 doesn’t have much side effects but A166 brought vision issues. He will start Gem/Cis, hope to add Abraxane if insurance company approves.
I was wondering if other HER2+ cholangio patients are out there and what other treatments he could benefit from. He had Herceptin, ZW25 and A166, 3 targetting HER2+ therapies already.
Thank you!!
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.
Hi Victoria – To help with Patrick’s discomfort in the belly, you might want to look into acupuncture, an integrative nature approach to help body/spirit while going through chemo. I have seen many cancer patients benefiting from and getting relief a lot in terms of pain management.
I am also exploring clinical trial these days. Have you checked out the Keytruda/immunotherapy lately? With limited clinic trial options, immunotherapy might be something to consider. There is one recruiting now at UCSF: https://clinicaltrials.ucsf.edu/trial/NCT02628067
Hope it helps.
Lili
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.
Hi I am looking for PD-1/PD-L1 options.. Is anyone out there with HER2 amplification having response to this treatment?
Thanks,
Carrot(s)
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: (
Thanks,
Carrot(s)
Hi Brigitte,
You probably need to reconsider proton therapy. I was told that proton has better successful rate with less side effect than radiation, especially for tumor in liver. Proton is type of radiation that starts to release the energy when reach tumor. Regular radiation starts to release when touching the skin, the killing power will be diminished when it reaches tumor, it hurts the skin, and other healthy cells on the way to travel to the tumor and pass through the tumor. Sorry I don’t know the best professional way to explain. This is what I understand. I sincerely hope you get the best treatment regardless.
Best,
Carrot(s)
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).
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!!
Carrot
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)
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?
Thanks,
Carrots
Mary
Thank you for those valuable advice and comfort words. I feel I am not alone and get a lot support from you. I reached out to seek for second opinion. Not many responses but I did hear from Dr Gores, who is widely recommended here by the board. Also Dr Lenz from USC. They agree the approach overall. I also contacted the manufacturer and found out there IS assistant program.Thank you for the clinical trial info, which does provide me the backup plan! Can’t say enough thank you to you guys! I am glad I landed right place!Hello mjheintz
Thank you so much for your timely inputs on my question. I am sorry that you got diagnosed same disease. Herceptin is not covered by insurance as it’s not meant to treat CC. So the treatment cost is skyrocket high. Knowing there is lots of unknowns and risk factors with this add-on, I am not sure if worthy it.Hello everyone.
This is carrot,the caregiver to my dearest husband who got diagnosed with ICC. He had tumor taken out with clean margin, but lymph node is positive. He is doing GEM&Cap chemotherapy as adjuvant treatment now and tolerated it well. We have been treated at MD Anderson. The medical oncologist is Dr Varadhachary. We feel devastating when got to know the diagnosis but also feel fortunate to know the foundation here. There is Her2 amplifier found in the tumor and dr recommends adding Herceptin(targets Her2 positive breast and stomach cancer)to the adjuvant therapy. This is not done before and no scientific proof. I was asking if anyone had similar experience before?
Thanks
