As Juno’s setback demonstrated this summer, CAR-T treatments pose a safety risk. The engineered cells, put back into the patient’s body, can work so furiously that the patient has a serious immune reaction, called cytokine release syndrome. Kite reported today that two patients died in the midst of cytokine release syndrome, one from a rare immune malfunction, the other from cardiac arrest. Kite and others administering CAR-T cells treat the syndrome with steroids or with the immunosuppressive drug tocilizumab (Actemra). Chang called the ratio of risk to benefit “favorable.”
Prior to my cancer diagnosis, I led a very active lifestyle. Now I am nervous that my former activities could cause lymphedema to emerge. What do you advise?
My earnest advice is that once you are a cancer survivor, you must enjoy the gift of life. This means not placing boundaries on what your definition of being alive. It is true that there is a small, finite risk of lymphedema appearing for the first time in somebody at risk, or becoming worse in someone who already has it. However, with the appropriate precautions, those risks are quite small. It is very important, activity by activity, to weigh the risk-to-benefit ratio. There is some finite risk of lymphedema with activities like surfing rock climbing, to choose two random examples. But you have to weigh the importance to your life of those continuing experiences. With or without ‘risky’ activities appropriate treatment for lymphedema is essential when the lymphedema appears. It is very important to faithfully use the garment that is provided to you, particularly during the activity poses theoretical risk. It is very important to maintain surveillance for changes in the limb-at-risk. Take precautions against infection when there are breaks in the skin and seek medical attention early if any changes are observed. When you go outside, put on a sun block, because sunburn can aggravate lymphedema. When you are working in the kitchen, be careful. When you’re in the garden, be careful, and wear gloves if there is the possibility of skin trauma. But what you want to lift, lift. What you want to do, do. And where you want to go, go. Just be careful.
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