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US physicians, so far:
Dr. Patricia Jones – Hepatologist
Dr. Lynn Feun – hematologist-oncologist
Both at the Sylvester Cancer Research Center of the University of Miami.
We also got a possible referral for Dr. Yakoub (surgeon) and I am aware that there is a Dr. Merchan (heme-onc) on the tumor board as well, but we have not seen them.
Hope this helps.
Admittedly, I didn’t do a lot of homework in finding more specialists. Our hepatologist put in the referral for the heme-onc who happens to specialize in hepatocellular and cholangiocarcinoma. He is a professor and very involved in research (Dr. Feun) and my Dad was comfortable with him.
I should’ve asked him how many cases he sees per year and other questions of the sort, but in all honesty we have all been exhausted and sometimes things fall through the cracks. He did mention that he had a recent patient of his who had one course of chemoembolization for BTC and has had a remarkable reduction in primary tumor size.
We’re still trying to figure out the way we’d be able to afford any of the treatments. That’s been a huge component of sorting out the options. He’s self-pay and despite a discount, everything has been extremely expensive. Right now, we’ve been able to pay the things they’ve asked, but we’re afraid that we’ll soon hit a wall financially. Their financial office is putting together the cost of the options so that we can make a decision. is there a list here of procedure costs when paid out of pocket?
I am tired and overwhelmed and we’re just getting started…
Thank you for your welcome. His tumor is metastatic. He’s got multiple lymph nodes affected. Whatever we end up choosing, it seems we’d still have to try a systemic approach.
My main issue is which combination would be best?
Thanks to Marion, I now see that there are YouTube videos that I can watch and educate myself about what the current options are.
Y90 seems promising and I know that Moffit is doing trials with it (at least that’s what I was told), so I am keeping it on the table.
You and Marion are both right in that we need to have a team. We have an Infectious Disease specialist (we found Hep B in this process) and we have the oncologist, a hepatologist and the availability of a surgical consult (consensus says inoperable at this point) to revisit the option for excision if we get the primary tumor to reduce its size. Honestly, radiation is only a far-off thought because both his Japanese team and the Miami oncologist seem to think that it’s not first-line for him.
Right now, we’re doing everything we can in Miami. He wants to be close to his family and I agree.
I am glad your mom did well. Stories like that give me hope that my dad will be able to reach milestones like that.
He was diagnosed in Japan and evaluated by their tumor board. All specialties were on deck for his case there. Unresectable as per surgery. 5-FU has been his treatment until he secured a second opinion Stateside. He has completed 2 cycles and has done well (no new scans, though), but CA 19-9 has risen.
Second opinion here at Sylvester-UMH (Tumor board agrees with Japanese findings). As you mentioned Gem/Cis chemoembolization was one of the recommendations. We requested that they look into immunotherapy options, if available (to get the ball rolling). I know that they will start a trial for solid metastatic unresectable tumors using a new agent called LY3039478, but we don’t know if he’d qualify for it. I sought this center because they’re doing research and it’s close to home.
Histopathology was done in Japan and I’ve never seen the results, but I know that all immunohistochemical analyses were likely performed. UMH requested the results and slides be sent to them for evaluation.
We tried to get a third opinion from a surgical oncologist who was recommended by a colleague and when I described the first few things he said “nothing I can do” and shut me out.
That’s the point where we are now. Sort of in limbo. We have done some, but we have yet to feel like we’re on some kind of road. I came here to see if there were good, uplifting stories and found some. I am grateful for the site and hope that we can all find a way to health.