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  • in reply to: Hello from Oregon #101024

    Hi Hannah,

    Thank you so much for taking the time to provide all this awesome info!!

    Mom’s oncologist at OHSU is Dr. Emerson Chen, he works on the same team as Dr. Lopez,  although I have always wondered if working directly with Dr. Lopez would be different.

    Starting next week, mom will be receiving her chemo at an OHSU center closer to home, about 10 min away. I’m eager to see how the new doctor will help mom.

    Mom was not due for a CT scan yet but she got one earlier this month for restaging reasons and it showed that her lymph nodes had decreased in size (about 1 cm each) but the tumor in her liver was growing a little on a different side now. He said he would consider her condition “overall stable.”

    I have mixed feelings about these recent news and worry about the new mass that’s growing. He stated it as it was the same tumor growing on a different side but the little I understood on the my chart results sounded like another tumor was growing in her liver. However, I accept that he’s the doctor and I am not.

    Anyways, thank you for all the diet and treatment suggestions. I’m sorry that we met through this situation but I’m so thankful that I found you and this community! It’s soo nice that you have all this knowledge on ICC and also live in the same state.

    Thank you so much!!



    in reply to: Spanish speaking members #101002

    This is great! Thank you!! I speak Spanish too and can be of help whenever possible 😊

    in reply to: Hello from Oregon #101001

    Thank you Hannah and Billy for your responses. Mom did get genetic testing and although hard to understand all the medical terminology, the terms “IDHI p.R132L” and “BRAF p.D594N” come up on the copy we received.

    She is being treated at OHSU in Portland, about 30 min from where we live. Her symptoms began as a dull ache in her stomach and some nausea. The pain/ache remains but that’s really the only symptom she has, and weight loss ( she’s always had a healthy body weight) but now she is down to 100 lbs.

    Apart from biopsies, and other diagnostic tests, she has not had much treatment other than the chemo and recently she’s been given Neuplasta. I’ve asked her doctor several times about getting her other treatments and I think I’ve annoyed him by now because he keeps saying that starting her on gem/cis is standard and if that doesn’t work they can consider other treatments.

    On another note, cancer seems to run in my fathers side of the family, however, as for my mom’s, she is the only person in her family who has had cancer. I strongly believe my parents and brother’s cancer comes from a different source, environmental perhaps? Mom was pregnant with my brother during the time she and dad worked in the farming industry-pesticides? However, no way to prove this suspicion.

    Anyways, I would be interested in getting her a second opinion. Can you please suggest how that works? Anything helps!!

    Thank you kindly,


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