jscott
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Quick update:
Well the CT scan was with contrast. I have contacted Dr. Kato’s office. They now have all of Andrea’s information including the CT and PET scan disks. They said it might take a week or two, but Dr. Kato would review the files. I sure hope that Dr. Kato sees some potenital in her case.
Best,
Jason
Wow. Thank you all for the kind words and encouragement. It has extra meaning coming from people that know first hand what we are going through.
Andrea and I have kind of taken a divide and conquer approach. She is focused on the therapy in front of her, and my job is research. The hope is that I can be knowledgeable about treatment options and tradeoffs so we can move quickly as things develop.
One of my worst fears is making a bad call on what to do. The only way I have found to push back this fear is to do everything I can to learn about this disease and treatment options. I may still choose the wrong approach, but at least I will have done my best.
What is pretty amazing (and just shows the power of this group) is that in the course of 24 hours, so many new options have popped up on this thread!
Sam — Football size and shrunk in half in two cycles? That is amazing. I hope things continue to go well with your wife. Fingers crossed that Andrea has a similar positive response.
Audrey — Thank you for bringing up dr. Kato. He seems like someone I definitely need to try and get to review Andrea’s information.
PCL1029 — Interesting. We only got a “lower abdumen” CT scan, but that was before the cancer diagnosis. I am not sure if it was “with contrast” or not. I should go back and check. Any thoughts on what extra information this type of scan might show? If I understood that better, it would help advocating for that scan with the oncologist.
The current plan is to get a scan after 1 or 2 more gem/cis cycles. It seems like that is a good time to reach out to Dr. Kato for another opinion (as well as circulate the scans with the docs I have seen already to see if their opinion has changed). Any thoughts on this plan? Should I push for a scan ASAP?
Holly! you got a resection even without getting all the cancer?? That may be a good option for Andrea. Lots of things are not possible given the extent of the cancer. Cutting most of it out and dealing with the rest seems like a sensible idea, but no one I talked to seemed to think that was a possibility. Thank you for commenting! It seems high risk but also high reward. My head is spinning.
Was the plan all along to do y-90 after the resection, and was there a reason that was thought to be a good plan?
Lisa — Your situation seems very similar to Andrea’s. It sounds like you are doing well with your treatments. I do hope so. Hearing success stories is very encouraging. Thank you also for the kind offer to talk.
Wow…24 hours…Great info and great people.
Thanks everyone,
Jason
From a new patient perspective (my wife was recently diagnosed with locally advanced Intrahepatic CC), I can see why clinical trials are not too popular.
Here is what I would say are barriers so far in my experience:
1. Trials are not a part of the diagnosis discussion. Our oncologists simply have not mentioned clinical trials as something to consider. I found out about them from my own research. I would think this is a systemic reason across all cancers.
2. The need for a new patient to do something..ANYTHING..to start treating the cancer is very powerful. We changed oncologists and Andrea moved her care to Stanford, and this delayed starting chemo by a week. This felt like a huge delay that was terribly concerning. However, once you start a therapy, that can severely limit your trial options. Given the often bleak information you run across when you first start researching ICC, the need to begin may feel especially powerful for ICC patients.
3. I am not sure exactly why, but trials seem like they are portrayed as what you do after all standard options are exhausted. Maybe this is a problem in the US? So many cancer patients may feel like they have a pretty good shot with standard options that they have not yet reached the “hail Mary” stage of a clinical trial? This is just a hunch on my part, as I don’t have first hand experience.
Jason
