The Power of Social Media and Patient Advocacy
I have been advocating #Icingduringoxaliplatin for some time.
We have about 50 COLONTOWN members who have done it, resulting in lack of or much reduced cold-sensitivity while on oxaliplatin-containing chemo regimens. What this means is one less annoyance, one less thing that takes away from your quality of life as a cancer patient. Without cold sensitivity, you can continue to enjoy cold beverages and food throughout chemo and not worry about the pain and pins-and-needles when you accidentally touch something cold with your bare hands.
Every new member on chemo containing oxaliplatin in COLONTOWN is invited to our LiveWire group, where there is a lot of active discussion on icing.
Recently a member posted very upset that her chemo nurse had forbidden her from icing, even though she had brought her own supplies.
I was quite frustrated when I saw this post, especially because I knew that when I approached other oncologists at this particular major cancer center, they had welcomed the idea of trying it. So I saw this as an opportunity to reach out to these doctors to ask if they had tried #Icingduringoxaliplatin and found anything negative about it. And if not, could they could please share their experience on icing with this member’s oncologist, who apparently was unaware of its beneficial effects.
They very graciously agreed.
A few days ago, the patient excitedly posted that her nurse called her and told her that she could ice during her next oxaliplatin infusion because they had apparently got an email informing them about icing.
This maybe a non-news item to most people. But to me, it shows what is possible when doctors and patients work hand-in-hand to make outcomes better.
Behind the scenes, here is what happened:
A COLONTOWN member gave icing a try last summer, and then posted about it in the community. The Live Wire admins & I saw the value in it, and looked up publications that supported such an approach. The admins did a lot of work to popularize icing among COLONTOWN members, while I tried to persuade oncologists — on Twitter and face-to-face at ASCO GI — to give it a try. As a result of all our efforts, there are many oncologists and patients who now use icing and there are two small clinical trials going on to test the efficacy of icing for oxaliplatin induced cold-sensitivity at West Cancer Center and MSKCC.
Sometimes, what adds value and quality to patient care maybe something as trivial as ice chips in a bag, along with curiosity and a willingness to listen to the patient experience.
Update! Manju and her colleagues in COLONTOWN’s Live Wire neighborhood presented this project at the 2020 ASCO Annual Meeting, the world’s largest cancer research meeting. We congratulate these patient leaders on this recognition of their important work!