Seeking input on best oncology center/Oncologist to consult on or manage treatment of liver mets from cutaneous melanoma. Rose just completed TIL and it worked miracles on her skin head neck lesions, but her liver mets spread badly during TIL. Very strange, TIL team was stumped. Now find us needing to address extensive liver mets. More BrafMek probably as interim step next, but she will need something else
- November 30, 2020 at 4:06 pm
In the PNW, but will relocate as needed.
Thanks in advance.
I don’t know of any melanoma specialists who are specifically known for their work on liver mets.. However, when looking for particulars like this, I’ve found the best way to find the “expert” is to see who the authors are on the topic. I have published articles addressing liver mets in melanoma with the lead docs/writers/researchers being Hamid, Daud and Di Silva. That is most certainly not the end-all, be-all list. But, you might have some success with that approach. Look for articles on the topic and see who wrote them. That’s what my husband did when I was diagnosed with ex-goblet cell adenocarcinoma – which is very rare. He emailed authors across the globe and most were incredibly kind – return emailing responses to his questions.
- December 1, 2020 at 3:10 pm
I don’t know that you will find this post helpful, but I put it together for those looking for a melanoma expert (again, not absolute or complete – but a start) – https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/10/internationally-renowned-melanoma.html
Hope that helps. Celeste
- December 1, 2020 at 3:31 pm
Other thoughts –
Melanoma mets to the liver are most common and problematic in ocular melanoma. While I know that is not the history of your wife, looking at those experts and treatments might be of value.
Can they biopsy (easily) the tumor in her liver? Heterogeneity in tumor mutation – tumors with different genetic make-up within one poor rattie – is often the cause of obstinate resistance to treatment. If they could biopsy that tumor and have it genetically analyzed – a better treatment plan may be developed. I always use Maureen’s husband (on this board) as an example here. Having failed one traditional melanoma treatment after another, he responded to a treatment typically used in HER2 breast cancer – discovered by analyzing his tumor type. Another way to look at that is to analyze circulating tumor cell DNA (I have a million reports on this on the blog). This is done with a simple blood draw. Further, are they certain the tumor in her liver IS melanoma? I know the most likely and obvious answer is, “Of course it is!” However, Julie and I are examples of the fairly rare, but significantly enough of us to be noted in studies, group who have melanoma initially and go on to develop ANOTHER effing cancer. Non small cell lung cancer in her case.
Don’t know if this is helpful. Just the thoughts that roll around in my strange head. c
Thank you all, very helpful.
- December 3, 2020 at 1:55 am
A biopsy has been ordered but with all the Covid stuff scheduling quickly is hard. They want the biopsy before putting her back on an interim regimen of BRAF/MEK.
We have been lucky enough to work in a consult for her with Antoni Ribas at UCLA next week. She has to fly down to see him in person but worth the risk given her situation, and he comes well recommended from her oncologist and folks at Fred Hutch.
We remain very hopeful, she feels and look great, but everything seems to take too long given the rapid progression in the liver…..patience is not necessarily a virtue in this case :).
Rose had her meeting with Dr. Ribas today….I’d characterize it as direct, and unfortunately not optimistic. He did not see any current clinical options other than BRAF/MEK, and was concerned that with her aggressive melanoma the BRAF/MEK window could be short. He did not feel any of the current trials he was aware of were relevant to her condition. She left deflated and very scared.
- December 10, 2020 at 4:12 am
We are collectively devastated, and not sure where to turn next.
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