← Return to treatment options for paratracheal lymph nodes with BRCA2

Discussion
Comment receiving replies
Profile picture for edmond1971 @edmond1971

Thank you for the information and thoughts, now reporting back with an update from my health team.

Radiation --- With the location of the lymph notes in my upper chest/neck area and so close to my heart and lungs, radiation is off the table. Overall, with BRCA2, there is less chance that radiation will ever be a end-all solution.

Scan --- We reviewed my scan and the team wasn't aware of any recent usage of the comparison of SUV uptake to the reading in the blood and liver. That approach might still have validity and be part of a management plan, but the team at my hospital that does 25 scans a day, they don't use this approach.

Start/Stop --- We reviewed the question of whether starting ADT and then stopping it and repeating this cycle can lead to a quick transition from castrate sensitive to castrate resistant and they were not aware of this. We are looking for some clinical trials or related data to support this.

Next steps --- We took a much closer look at the results of the EMBARK trial and explored options of monotherapy with just Enzalutamide, monotherapy with just Relugolix, and dual theory with Enzalutamide and Relugolix. This was a good trial with plenty of people in each arm. We took a look at the ARAMON trial for Darolutamide and while good results, with just 23 patients it would benefit from more data. For what it is worth, my doctor is a little (not much, but some) concerned about Darolutamide drug for the seizure risk. We came to the overall conclusion that some form of treatment is inevitable but not urgent, so I'm going to do more research to make an informed decision about mono versus dual therapy and also see if the team has any new findings from the February conference. However this works out, I'll be on treatment in March.

Onward!

Jump to this post


Replies to "Thank you for the information and thoughts, now reporting back with an update from my health..."

@edmond1971
I’ve already mentioned to you. I have BRCA2 and I’ve had prostate cancer for 16 years. I’ve had surgery followed by salvage radiation. I’ve had four reoccurrences and I’m now on. Orgovyx and Darolutamide. Darolutamide Has been the absolute best. I’ve had no side effects from it and I know at least a dozen other people that are on it that have had no side effects. Some of them are taking it as their only drug. It doesn’t pass the blood brain barrier so it doesn’t cause brain fog. Previously, I was on Zytiga And it gave me 4 afib events, I also was only undetectable for one month in 2 1/2 years of taking Zytiga. The last Afib event landing me in the hospital for four days. I’ve been undetectable for 26 months due to Darolutamide.

I had surgery where they had to cut open part of my stomach, and one drug they didn’t have me get off of was Darolutamide. My oncologist said it would not be a problem and it wasn’t.

I’m not sure exactly what your doctor is talking about A seizure risk, I’ve never heard of anybody having that problem.

Enzalutamide causes a lot of fatigue for many people and has other side effects that are annoying. Much better to get on Darolutamide.