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Connect to Chinese ROS1 Group

I always believe that we are stronger together than we are alone. So when I heard that there is a Chinese ROS1 Group, I tried to put people from both sides together. I stayed on Chinese ROS1 Group for 3 weeks now, and I’m an active member there. I have passed our US ROS1 Group’s information to the Chinese ROS1 Group. They are very enthusiastic, right away there were several of them want to join the US ROS1 Group. I passed the Chinese ROS1 translations from our US website and our US ROS1 Positive Cancer with “Join the group” button. But Facebook does not work in China, don’t know finally how they could join.

I found that Chinese ROS1 Group are very well informed about what’s going on, they have the proceeding of IASLC/WCLC2018 and ASCO2018, etc. They have different doctors to answer their questions in their group chat and give them suggestions. There are doctors/researchers to recruit them for clinical trials. China is very active in research.

I noticed that, like us in North America here, the Chinese ROS1 Group members are facing the same problems like side effects of medications, medications stopped work, different new medications, alternative treatment, etc. This is the part that the Chinese fellows want to communicate with the fellow Americans. I suggested the Chinese fellows that I can translate their selected questions, ROS1 people in US will answer them, then I’ll translate it back, or vise versa. Any other Chinese in US side of ROS1 group, known Chinese writing, are welcome to join and to help.

They don’t sugar-coat anything. They are very honest and straightforward. I’m not too familiar to it anymore after living in Canada for 30 years. There is another thing I’m not used to: fellows of Chinese ROS1 groups use humors to encourage each other. I also noticed that, besides cancer patients in the Chinese ROS1 Group, there is quite large number of caregivers-sons and daughters of the patients. They are 20 to 40 years old and responsible to take their parents to see the doctors, to get the medications, and to comfort the parents, etc. It shows that the Chinese close relationships between 2 generations. It’s also due to that every couple was only allowed to have 1 child until recently. So taking care of parents is the child’s sole responsibility. This is very different from North America. Nevertheless, I’m very impressed that the patients and caregivers of the Chinese ROS1 Group are very knowledgeable.

They have 245 people now in the Chinese ROS1 Group. Like us, the US ROS1 Group here, there are some patients/advocates, very intelligent.

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Comments

  • Christine Qiong Wu moderator author
    3 weeks ago

    ROS1 is a kind of lung cancer.

  • carolhg
    3 weeks ago

    What is ROS 1?

  • Alisa moderator
    3 weeks ago

    Hi Carol, ROS 1 is a genetic mutation. They didn’t know about this back in the day when we were diagnosed …. I found out in 2014 when my doctor had my original tumor tested that I was EGFR +. Here is a link that helps explain mutations:

    https://lungcancer.net/genetic-abnormalities/

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