My friend John Schappi posted recently about his participation in a support group for Parkinson’s Disease patients, so I decided I would look again at support resources for melanoma patients. I started with what I knew – an online community that I’ve been relying on for information over the last 10 months. But as I’ve noted in recent posts, our experience with melanoma is in transition – from an active battle against the beast to one in which we get on with our lives. So, it’s time for something else – and my search continues.
The resource I’ve been using, Melanoma Research Foundation’s Melanoma Patients Information Page, is the most active melanoma community I’ve found so far. Patients and their loved ones are online a lot there, and some of them are quite experienced in researching and answering questions. The active community includes some multi-melanoma survivors/families and patients across the spectrum of melanoma types. (Patients with ocular melanoma have a separate board on the MRF site, so we don’t read much about melanoma of the eye on the main board.)
A lot of patients with “no evidence of disease” (NED) and their caregivers “check in” from time to time on the main MPIP board to share their good news about recent test results. However, as one very active member of the community (who goes by the screen name Janner) noted recently, the main board attracts people who are new to melanoma and are seeking information from experienced, active melanoma warriors – the other primary group on the board. By and large, as Janner said, long-term survivors who have been treated and moved on aren’t on the site much, and the bulk of the traffic (posts and comments) comes from newbies and patients who are in active battles against the disease. As she said, you can get a pretty skewed view of life after melanoma treatment if all you look at is posts from people in active war with the disease.
I’m ready to move on from MPIP (at least for now), but I think I need something to replace it. So, I’ve been looking for another resource. Here’s what I’ve found so far.
WebMD also sponsors a Melanoma/Skin Cancer Community, but it is not nearly as active as the one offered by MRF. WebMD’s staff monitor the board and try to offer helpful information, but they are not schooled in melanoma and appear not to be personally involved. That’s only important if you think people who are actually part of the community offer more helpful advice than a website’s employees who are there to help people use the website better. It’s the lack of ongoing discussions that keeps me from thinking this will help me move on.
Patients Like Me aims to create a lot of communities for patients with various diseases. The website has snazzy tools that chart your mood and symptoms if you take time to update, but not much other substance. This site serves patients with many different diseases, and the melanoma community there is pretty small (about 140 members) in comparison with MPIP. You can join forums and follow tags for other conditions, but it doesn’t appear to offer the same kind of active community I’m accustomed to.
My research also found a helpful listing of melanoma support groups on the website of the American Melanoma Foundation. It doesn’t list a live group in D.C. or close-in suburbs (unless you count Fairfax as close-in, which I don’t since it’s in Virginia and more than one county from the District line ...), and it’s possible the website hasn’t been updated since 2006 – so not the most helpful. I looked at the online support groups listed on the AMF page, but neither of them looked promising.
I’ll keep looking, and will ask Dr. Lipson for suggestions about how to find a group when we see him at the end of the month. I also plan to post on the MRF community board to see if anyone else knows of a group or is interested in getting together.
Meanwhile, my stress level seems to be inching down. I’m sleeping better, and I don’t feel anxious when I go to bed anymore. Perhaps I can take care of this on my own (my preferred way). It’s certainly worth a try.