Regular readers know that I sometimes will post an e-patient request, and some of those answers go into my list of patient communities on this site. Here’s one I can’t believe I haven’t written up, because I know there are lots of them!  But that’s probably why nobody’s ever asked, here.

Colon cancer

An audience member from overseas writes saying that a relative has been suddenly diagnosed with colon cancer, with poor prognosis.  I went to my Communities page and found nothing. That’s crazy because I know there are lots of communities for colon-related conditions. (My page has several for Crohn’s and colitis, but not colon cancer.)  Who are you, out there??

My memory is notoriously bad so I apologize for not remembering you all. Off the top of my head I remember:

• Colontown (“mayor” Erika Brown is on Facebook)
• Colon Club’s message board
• ____

Who else??  As always, answers will be recorded on the Communities page, for others to find. Thanks!

 

Latest in a series of e-patient requests.

A good friend overseas writes that due to a fracture and other conditions she’s on Xarelto, a drug to prevent blood clots. (Here’s the drug’s page from the EMA, “the European FDA.”) The drug is causing serious issues with her blood and liver enzyme numbers and may be discontinued next week. Meanwhile she seeks e-patient advice in addition to everything she’s already found.

Her questions:

Are there any reports of adverse events from patients on the drug?

Is there anywhere online to discuss the drug with patients who are on it?

Any other suggestions?

Thanks!

(Via e-patient buddy @Stales, here also is the FDA’s info PDF on the drug, and the drug’s page from PubMed Health.)

 

Latest in a series of e-patient requests.

Last year in an airport I bumped into a  long-ago co-worker. In light of the work I do in my travels it was stunning, because he said he’d been diagnosed with diabetes and he’d felt so alone … he’d never met another person with diabetes.

It stunned me because I’ve long said that diabetes patients are the archtypical e-patients – they have to be engaged in their care, and diabetes has long been the disease with the biggest online communities. But his providers had never mentioned connecting with others.

We parted, and he went back and did so. Today we’re Facebook friends, and now he writes this call for assistance. Kerri, Manny, Amy, Ginger, any of you, what say you? Thanks!

(As I read his notes below about all the things he’s done to be proactive, it’s deeply moving. He’s made a lot of progress but with some embarrassment he’s owning up to what’s not working; still committed to his goal, he’s reaching out for more support. Ain’t that engaged, empowered and responsible??)

So please, DOC (diabetes online community), dish up some advice.  I’ll link this discussion on my Patient Communities page for future reference.
______________

Update the next afternoon: already some great information has arrived in the comments (and questions to clarify). Be sure to read the comments. There’s no instant miracle here – it’s just the work of social media in healthcare unfolding.
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This comes tonight from Regina Holliday, creator of the Medical Mural Advocacy Project and the Walking Gallery of Healthcare.

Tonight she visited Ben Merrion, whose Walking Gallery jacket [right] was featured two years ago in her post Steampunk Health. Here’s what I know:

• Ben’s in Georgetown Hospital with abdominal sarcoma*
• Main mass 3m by 8cm [1.2 x 3.2″]
• Tumor growth throughout abdomen from stomach to pelvis.
• Nodules detected in lungs.
• Probable involvement of leg awaiting PET scan to determine extent of Metastatic spread.
• The growth is too large for surgery.

Regina writes: “Know any options that work at stage 4?”

*  From Wikipedia: sarcomas are “malignant tumors made of cancerous  bone, cartilage, fat, muscle, vascular, or hematopoietic tissues … This is in contrast to a malignant tumor originating from epithelial cells, which are termed carcinoma. Human sarcomas are quite rare.”

Also, the American Cancer Society’s consumer-level page seems quite clear, to me, with discussion of the different types of soft tissue sarcomas.

Resources

Of course googling any disease name and “treatment options” will bring up the usual list of websites, but if that’s sufficient, people don’t come here with an e-patient request. So the list below is things that go beyond the usual suspects. Here’s what I found so far:

• The Liddy Shriver Sarcoma Initiative, which among other things says “We recommend Dr. Kevin Jones’ book, What Doctors Cannot Tell You. Dr. Jones is a sarcoma specialist. In this 2012 book, he shares his experiences in order to help patients better communicate with their doctors.”
• Inspire.com’s soft tissue sarcomas group
• Dr. George Demetri is a big advocate for e-patients. He’s in the e-patient white paper (PDF) and is Medical Director of the Center for Sarcoma and Bone Oncology (and director of Experimental Therapeutics) at Dana Farber. See his emailed reply, pasted into a comment below.

Anyone?

From time to time I post an e-patient request from someone who seeks information or a community of patients with a particular condition.  This one is for a patient who had knee surgery in April, and it hasn’t gone well; current status is “Lots of pain, mood low, can’t walk well at all.” The history:

If you have advice, please reply in comments below.

If for some reason you want to reply privately, see my contact page. And thank you, all.

From time to time I post a request from someone who seeks a community of patients for a particular condition.  I’ve been accumulating them on the communities page on this site. Sure wish we had a grant to grow a list and manage it well!  How many people would THAT help??

This one is from a person who’s had mild epilepsy symptoms for years.  It’s been well managed, allowing normal life, but it may be time to look for “what’s next” sorts of treatments. So, in addition to working with their medicos, the family’s wondering about astute patient communities.

I know about the one at PatientsLikeMe. Any others?