ROS 1 found in Foundation One liquid biopsy but not their solid biopsy. Anyone had findings in liquid but not solid? Exploring next steps.

[Barbara345]

Hi, looking for MaleCare friends; experience/knowledge, plus suggestions of MO specifically for extra consult. Solid sample came from bone met. Discrepancy is causing quandary --- which result to believe and is further testing or a repeat needed.

There is a medication, entrectinib, a tyrosine kinase inhibitor, approved for ROS 1 and apparently well tolerated, that could be considered; possibly other treatments as well. As Barry has already failed docetaxel and enzalutamide and it looks like Cabazitaxel mightn't be working either, this is important as we're looking at other options.

We've gotten varying opinions, I've looked at research, we have a medical consult scheduled Monday. I thought the solid biopsy would show more findings than the liquid one; apparently this didn't happen here. ROS1 was on the list tested for in the solid biopsy...,. they just didn't find it there.

We also are in conference with the Foundation One people on this.

Basics -- Barry has mcrpc, diagnosed last August, Gleason 9, extensive bone mets that have continued to progress. Excellent attitude, he's still exercising etc., trying to do the best in the face of this mess.

Thanks!

[Chugach]

Hi I don’t know if this helps, I was determined to be MSI-H in the liquid biopsy, but not in the solid biopsy (both foundation 1). I don’t know if they were not looking for MSI-H in solid in 2016? I still don’t know how that was missed

[Barbara345 in reply to Chugach]

Thank you. Did they decide to accept the reading in the liquid biopsy even though the solid didn't show it?

[Chugach in reply to Barbara345]

Yes and it allowed me to quality for Keytruda which has been a game changer for me. Sorry for the slow reply

[Barbara345]

Thank you Church and others --- in our consult today (Dana Farber) the oncologist also is "going with" the liquid study result. He wants Barry to have a third round of Cabazitaxel to give it one more chance; also to get started on approvals for entrectinib, so if it's time to stop Cabazitaxel he can immediately try the entrectinib. He said the only way to know for sure if the ROS1 is valid (he seems to think it is) is to try the entrectinib for a month --- if it works, great; if it doesn't, then he'd try something else.

[Loves2golf in reply to Barbara345]

Barbara, could you please tell me who you see at Dana Farber? That's where we go, but we are not given any suggestions for treatment. I'm the one bringing up possible things to try. It's very frustrating.

[Barbara345 in reply to Loves2golf]

We consulted with Dr. Sweeney, via telemedicine because of distance and Covid. He had been well recommended and we also watched his video. We were impressed with him both professionally and personally -- he is a delightful person as well as a very knowledgeable doctor, willing to listen as well as suggest. He also asked if we were comfortable with his recommendations, which I liked.

I'm curious who you are seeing. By the way, I would find your situation frustrating too -- we've been there too many times.

[Loves2golf in reply to Barbara345]

We are seeing Dr. Sonpavde. We are thinking of looking for someone else for a second opinion.

[Barbara345 in reply to Loves2golf]

I really like second opinions, especially at decision points. And feel it's very important to be comfortable with whomever we rely on.... good to hear from you.

[Loves2golf in reply to Barbara345]

Thanks Barbara. I have to get over the fear I have that I am insulting the Dr. by saying I want a second opinion.

[Barbara345 in reply to Loves2golf]

I hear you and relate to and understand our fear of being "impolite." However, you need to be comfortable, whether it's getting a second opinion or changing your Dr. entirely, either within or outside of your hospital.

Nobody has all the answers, and reluctance to support a second (or even third) opinion would seems like a "red flag" to me. It's so important to be comfortable --- it's our husbands' lives at stake, and our emotional well-being matters to their lives too.. For the record, we've needed to get other opinions at critical junctures, and our local MO is very supportive and is okay taking advice when needed. As Barry's cancer has misbehaved, this has been especially critical -- whether we change "main" doctors or keep with second opinions.

I hope this helps, and I hope to stay in touch with you as you keep going.

[Loves2golf in reply to Barbara345]

Thank you so much. I wish you and Barry the best. This journey has been a nightmare with countless sleepless nights. This site has been such a rich source of help and information. Thanks you for all your help.