Entrectinib and ROS1

[WDebens]

Is there anyone either ROS1 or on the Entrectinib trial - or both. It would be good to compare notes.

[Hidden]

I was diagnosed in January 2019 with ROS1 but am on crizotonib. I had 1.5 lungs filled with tumours, mets to liver, lymph nodes and malignant pleural effusion. I was nearing the end when finally diagnosed. Within 5 days of taking crizotonib I was off oxygen and off morphine a few weeks after. My scans show cancer still there, but either reduced or not growing. More importantly I am feeling good. Back at the gym, at work and taking care of my three kids. I have lots of side effects from critzotonib, but compared to the alternative I am managing quite well. My white cells have been low (~1000) so was worried I would have to stop the drug, but they miraculously improved. Life is lived scan to scan - but am doing great!

Best of luck on your ROS1 journey. Check out the Ros1ders website. Lots of info there.

[Barbara345 in reply to Hidden]

Hello, I know it's been a year. My husband Barry has ROS1, and was just approved to start Entrectinib (a sequel to crizotonib), after the first three "standard" treatments failed and the cancer . He has Metatastic Prostate Cancer (with bone metastases) -- ROS1 is extremely rare in prostate cancer. . Perhaps I can hear more of your journey -- nobody on the advanced prostate site is using this. I hope you are continuing to duo well. Also interested in hearing about crizotonib, as it might be next if he can't tolerate entrectinib. Also I'll check the ROS21ders website. Thanks!!!

[WDebens in reply to Barbara345]

Hi Barbara. I’ve just started my third year on Entrectinib so I continue to do well. There are some side effects but nothing so bad I’d want to stop. The worst was probably the change of taste or possibly the “drunk” legs. I still have some taste issues but the wobbly legs have stopped. I also put on a huge amount of weight, so much that I ended up having both knees replaced. That was done in February so all good now. I think you are the first ROS1 prostrate patient (or your husband is) that I have come across. Mostly we are made up from Stage IV non small cell lung cancer patients. I think we have a mother whose daughter has ROS1 brain tumour and a breast cancer patient. Did you join the group? It really is a very useful group and very knowledgeable. I’m not an expert but I don’t think you can go backwards to crizotinib if Entrectinib doesn’t work. Also crizotinib doesn’t protect the brain but Entrectinib does. But you can ask the question in the group and you’ll most certainly get a considered response. I hope your husband tolerates the Entrectinib; it gave me a new lease of life.

Wendy

[Hidden in reply to Barbara345]

There are lots of options for ROS1. I have been on crizotinib for almost 18 months and have found the drug pretty easy to tolerate. There is a long list of side effects, but it's amazing what the body can adapt to (swelling of feet, dizziness, visual illusions, loss of taste, nausea, diarrhea). Most of these symptoms have either subsided or I have gotten used to them to the point where I forget that I even taking a medication. However, I now have lung progression on crizotinib so will be transitioning this week to lorlatinib - which also protects the brain. If that doesn't work I will then apply for a clinical trial of Repotrectinib. There are lots of options and new drugs being developed. Best of luck to your husband!

[Barbara345]

Hello, I know it's been a year. My husband Barry has ROS1, and was just approved to start Entrectinib after the first three "standard" treatments failed and the cancer . He has Metatastic Prostate Cancer (with bone metastases) -- ROS1 is extremely rare in prostate cancer. . Perhaps I can hear more of your journey -- nobody on the advanced prostate site is using this. I hope you are doing well. Thanks!!!