What, Me Worry? ROS1 patients find calm by managing stressors specific to ROS1 cancer

This article by Joyce Hoelting first appeared in the Fall 2021 ROS1derings (newsletter of The ROS1ders).  If you’d like to receive future editions of our newsletter by email, please subscribe to our blog by providing your email on our Contact Form.

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The more researchers learn about cancer, the more cancer patients can learn about their specific disease: how it might progress, and what specific challenges they may face that another patient won’t have. That’s both good and bad news, because knowing more about what might go wrong can raise anxiety.

To reduce anxiety, it can help to tease out what patients can and cannot control. ROS1ders work together to stay educated and learn, specifically, what’s tough about ROS1+ cancer. And they share tips about managing those challenges in a social media forum. Below, we’ve outlined some concerns that are specific to ROS1+ cancer, and share tips from patients who are experiencing them.

The worry:  Finding knowledgeable oncologists

Why worry?  ROS1 fusions are rare, occuring in roughly 2 percent of at least 12 different cancers. Few doctors have any experience with ROS1 cancer, and even fewer see more than one ROS1 patient. It is difficult to find oncologists familiar with all available research and current treatment options.

What can patients do to manage?

  • Unless your oncologist has a demonstrated understanding of ROS1 cancer, assume that both of you will have to do some research.
  • Seek an oncologist who is open to keeping a ROS1 specialist on speed dial.
  • Keep your oncologist informed about what you learn from legitimate, research-informed sources and from other ROS1 patients.
  • If your oncologist is not open to learning and seeking information, consider shopping around for a new medical team.

The worry:  Brain metastasis

Why worry?  According to an article in the Journal of Thoracic Oncology on the topic, “Brain metastases are common in Stage IV ROS1-positive NSCLC, though the incidence does not differ from that in other oncogene cohorts. The central nervous system is a common first site of progression in ROS1-positive patients who are taking Crizotinib.” Crizotinib patients may be vulnerable to brain metastasis because the drug does not reach the brain effectively for most patients. So ROS1 patients may feel a persistent stress about whether brain mets will develop or re-emerge.

What patients can do to manage

  • Take heart. Options for successfully managing brain metastasis are expanding. Two new drugs — Loratinib and Entrectib — have been approved in the past five years. (Entrectinib is approved for ROS1+ cancers, while Loratinib is approved for ALK-driven cancers and can be prescribed “off label”  for ROS1ders.) These drugs, as well as stereotactic radiation, can be effective in treating the central nervous system. .
  • Make sure your oncologist is open to conducting brain MRIs regularly. It’s best to catch brain tumors early, because it might be possible to treat them with stereotactic radiation and stay on your current drug. Practices differ, but ROS1 patients treated at major academic cancer centers typically get brain MRIs every 6 or 12 months. ROS1 patients who have had brain mets might get scanned more often. However, some countries only allow brain scans if the patient has neurological symptoms.
  • Pay attention to your body. Be aware of changes that may indicate trouble in the central nervous system such as balance issues, headaches, or vision problems.

The worry:  The threat of blood clots

Why worry?  Research has found that ROS1+ lung cancer patients are more likely than other oncogene-driven cancers to develop blood clots within 90 days of diagnosis .

What patients can do to manage

  • Stay in touch with your body. If you have unusual pain or swelling (especially in just one side of your body) or sudden difficulty breathing (especially upon exertion), contact your doctor or clinic promptly  about getting an ultrasound.
  • If you’ve had a blood clot, blood thinners may be needed to help prevent additional blood clots. Consult a reliable medical source to consider this treatment.

The worry:  A limited number of drugs

Why worry?  ROS1+ cancer drug development is ongoing, but we still do not as many drug options as some other oncogene-driven cancers.

What can patients do to manage?  

  • Pay attention to encouraging developments. The number of drugs available is expanding, with drugs going through clinical trials and approval processes. Moreover, ROS1 specialists are fine-tuning ways to make each drug last longer, using combination therapies, radiation and more.
  • Work with your oncologist and ROS1+ specialists to make the drug you are on last as long as possible.
  • Ask your oncologist to order biomarker testing on your cancer if it grows. A ROS1 specialist can use biomarker test results to help your team choose a new treatment wisely, based on what’s causing your cancer to progress.NOTE:  To accelerate research into ROS1 cancer treatment, The ROS1ders have organized to facilitate donations of fresh ROS1 cancer tissue to researchers. Read more about the ROS1 Cancer Model Project. 

The Worry:  The side effects of ROS-1 treatments

Why worry?  While new, more targeted, cancer treatments can be less harsh than treatments of the past, they still create difficult side effects for some patients. The type and severity of those side effects can vary from patient to patient.

What can patients do to manage?  

  • ROS1 patients and caregivers have come together in the “ROS1 positive (ROS1+) cancer” Facebook group to share information about managing side effects. The  ROS1ders have collected patients’ tips for dealing with common side effects of crizotinib. You can read them here.
  • The most important thing you can do is find ways to cope without giving up. Some patients are tempted to take a “drug vacation” from a TKI if their cancer is controlled. Unless guided by a knowledgeable doctor, this is generally a bad idea, because without the TKI their cancer may begin to grow. When they restart the TKI, it doesn’t always work again.

Your disease is YOUR disease

It might be easier for all of us to manage as patients if ROS1+ cancer were a cookie-cutter disease, but it is not. There is no fool-proof  map to help ROS1 patients manage. Without a map, the best we can do is find companions as we manage our stress. We believe that information and support from other patients will make a difference.

The “ROS1 positive (ROS1+) cancer” Facebook page is a forum where patients support each other. Out of respect for our members, only ROS1 patients and caregivers who have submitted the required information are allowed in. To join:

  1. 1) Fill out this form: tinyurl.com/joinROS1ders
  2. 2) Go to https://facebook.com/groups/ROS1cancer/ and request to join the group.