Targeted therapy is now standard of care for patients who have metastatic (stage IV) ROS1+ non-small cell lung cancer (NSCLC) in many countries. If you are newly diagnosed with ROS1+ Cancer, or if you have already been through other cancer treatments such as chemotherapy or radiation, starting a targeted therapy can be both a positive and nerve-wracking experience. You probably have questions, many of which you can ask your physician. Although every experience with treatment is unique, it can help to understand what others in your situation have gone through.
The following provides some ROS1ders’ experiences with starting a new targeted therapy in their own words. If you are a ROS1+ cancer patient and want to learn more or connect with The ROS1ders, please join our Private Facebook Group.
Crizotinib was approved by the FDA in 2016. It does not treat the brain effectively. The following are only a few experiences with starting this targeted therapy:
“I started Xalkori, November 1, 2018. By the end of the first week, the swelling in my neck was gone. 1 month later, my Cat Scan showed no signs of tumors in my lymph nodes.” - Renee Louie Brose
“I am taking oral treatment Xalkori 250mg twice a day [. . .]. The treatment has some side effects: double vision, feet and hands swollen, depression, anxiety and I also lost some of my weight. Cancer has shown me something that if I don't take care of myself it will take me out of this world and I am not ready to go yet. I keep myself positive at all times.” - Maria Quezada Rivera
“I was then officially diagnosed with ROS1 at the 3rd week of biopsy procedure, after which I was prescribed Crizotinib, which I started taking a month after the “doomsday”. Luckily, the scheduled PET scan (3 months after the diagnosis) has shown a complete response to the therapy of the prescribed medication. [. . .] Unfortunately, Crizotinib has been helpful and efficient for just 1.5 years, after which several metastases has appeared in my brain.” - Natalie Monaeva
“I started crizotinib in early December 2020, 250 mg 2x a day. Unfortunately, after 9 days I had a severe reaction that resulted in 4 days in the hospital to get my high fever and horrible rash under control, they ran every test imaginable but no cause was identified. They ended up saying it was probably due to the immunotherapy drug that could last up to a year in my system, not really a tested combo I guess. But after a two week break from crizotinib it was reduced to 1x a day which seems to be working. It’s been a little over a year with tolerable side effects and the 3 month CTs and MRIs show no progression.” - Amy Micou
Rozlytrek (entrectinib) was approved by the FDA in 2020 for ROS1+ cancer. It does treat the brain, and is often prescribed if the patient has metastases in the brain. Many patients have experienced a variety of side effects, both short term and long term on entrectenib. The following are only a few experiences with starting this targeted therapy:
“After being on the entrectinib and having side effects that seemed minor compared to the side effects I had from the melanoma drugs, we learned from my scans that the drug was working. My cancer was again shrinking and I was responding well. I was feeling very very fortunate once again.” - Karen Weiss
“Wes started on entrectinib 600mg. Since that time, he has had many connective tissue, muscle and tendon issues. They led to some unintended surgeries: bilateral knee replacement, 3 back surgeries and a bicep tendon rupture repair. He has reduced his entrectinib dose to 200mg for almost 2 years with stable CT and PET scans. Numbness and tingling has been a side effect, as well as a loss of taste which has resolved with the dose reduction.” - Wes Graves
Lorlatinib is not approved by the FDA for ROS1+ cancer, but is recommended by the US National Comprehensive Cancer Network (NCCN) for 2nd or 3rd line treatment of ROS1+ NSCLC. It is sometimes used as a first line if the patient has many brain metastases or leptomeningeal disease (cancer in the meninges of the central nervous system) because it is particularly effective in treating the brain. The following are only a few experiences with starting this targeted therapy:
“After a year [on crizotinib], I progressed in the brain and had Gamma Knife again to blast the metastasis away. A couple of months after that, I developed more brain mets. Evidently, my brain is fertile ground for this cancer. I then decided it was time to change treatment to Lorlatinib. I experienced lots of side effects on the full dose. I was reduced to the lowest dose, yet again, and I have been truly blessed to remain stable for over 2 years.” - Stephanie Cole
“When I began the drug, I was cautiously hopeful, keeping a few things in mind. 1) The drug is a treatment, not a cure. 2) It works for some people, and not for others. 3) If it works, there is no guarantee how well it will work, or for how long. My mantra at the time was ‘Each person’s cancer is different. Each person responds differently to treatment.’ Over the years, thankfully, lorlatinib has worked pretty well for me.” - Leslie LaChance
Whether you are newly diagnosed or moving onto another targeted therapy due to progression, The ROS1ders can share experiences and research about many of the available targeted therapies. Connect with us today to learn more about how we can help.