The Mesothelioma Symposium

Until this past weekend, I had never met another person with mesothelioma (in person rather than just on Zoom). But now, having attended the International Symposium on Malignant Mesothelioma held in Philadelphia last weekend, I have met lots of them. It was really good to hang out with people I have such an important thing in common with, as well as to learn from them and from the various presentations. 

Attending the Meso Symposium

Here are some things I learned or was reminded about:

1. I am doing really well. My response to treatment has been very strong, and that is not always the case. A lot of people mentioned that they would not have guessed that I was a patient.
2. I have a great medical team. Various attendees mentioned being frustrated with their doctors and finding it hard to get good care. My heart goes out to them.
3. I can't count on staying well. This disease is infamous for coming back after apparently successful treatment. Even radical surgery is not considered curative.
4. There are other treatments, some already available and some coming, that I'll be able to try when the time comes.
5. Now is the time to think about what I still want to do with my life and to set about doing it. Between (1) and (3), it looks like I will have some relatively healthy time, but it's completely unclear how long that will be. One patient panelist recommended having a five-year plan, and that sounds about right. Life may throw the plan way off, but it's important to have one.
6. On a more practical note, we learned that the gut microbiome is important to getting good results from immunotherapy and that eating fiber helps people get those benefits. So I'll be eating my fruits and vegetables!
7. We also learned that yoga, acupuncture, and various other complementary practices can help with symptoms and side effects. There's starting to be real scientific evidence in this regard. I'll be doing my yoga more diligently and considering acupuncture.