Rozlytrek and weight gain anyone?

I was on Rozlytrek for four months in 2023, I had a lot of edema along with numerous other side effects. When I switched TKI to Xalkori I lost 15 ponds within 2 weeks and far less nasty side effects. As you probably well know, we all respond to different treatments differently. I've heard reducing your dosage from 600mg to 400mg helps as well; that's a discussion with your oncologist. If you have a ROS1 mutation check out the Ros1ders on Facebook, they are a wealth of information and support.

I experienced Grade 4 hepatotoxicity on Crizotinib( Xalkori) so was switched to Entrectinib(Rozlytrek ). I started with 600 mg but was later reduced to 400 mg for having severe side effects.Now I’m back to 600 mg dose again. My oncology team always checks for edema in legs , arms and hands. I feel like I’m gaining all my weight in my stomach area. We have talked about going back to Xalkori because of all the side effects I’m having but. I feel like I don’t want to keep giving my body shocks from switching back and forth. But if I keep gaining weight along with other side effects it’s making things hard even though I’m trying to keep positive attitude about it.

I don’t know if my hepatotoxicity was due to taking two different antibiotics amoxicillin and doxycycline with Xalkori.

Yes, I have ROS1 mutation. Thanks for letting me know about Ros1ders. Is Xalkori working for you? Rozlytrek is keeping things stable but it hasn’t reduced the size.

Yes, I have had everything reduced while on Xalkori. I had a significant pleural effusion, 2 x 3 cm mass in the left lower lobe, 2 positive mediastinal nodes, lining of the left lung involvement and two brain Mets. After 9 months on Xalkori, I've had 85% reduction in disease.

Thank you! You been extremely helpful. I have requested to join the Ros1ders and hopefully learn a lot more from others.

I am on Tagrisso and I don't know if it's the Tagrisso or the cancer that is making me loose weight. But, I'm losing weight everyday, so more than others. I don't what to eat or do to maintain a constant weight.

@mikee2all- Good morning. I lost weight also. Some treatments cause this. Have you googled Tagrisso to see what the company has to say are normal side effects?

Merry

@velmaforever, Stable is good! Glad the targeted therapy is working for you. Unfortunately, many of these meds come with a long list of side effects. They are keeping us alive, while presenting us with other challenges. I take a different targeted therapy (alectinib for ALK), which also has a documented side effect of weight gain. You do want to make sure the weight that you are gaining isn't water, so be sure to watch for swelling ankles or fingers. Other than that, I'm not sure I have much advice, as I've gained some weight too. I try to eat healthy most of the time and go to the gym which seems to be good for my mental health too. I'm trying to accept the weight, but it's not easy.