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.
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.
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.
Two really good resources for Sarcoma patients that I know of are
1) The Life Raft Group http://liferaftgroup.org/
2) Sarcoma Alliance http://sarcoma alliance.org/
Both have Twitter accounts and are helpful/responsive to people
Gilles Frydman says
The LifeRaft Group deal exclusively with GIST (Gastro Intestinal Stromal Tumor). If your friend has any other type of sarcoma, then the Liddy Shriver Foundation, the Sarcoma Alliance and the Sarcoma Foundation of America (http://www.curesarcoma.org/) would be better places for information/support.
If you give me more details, I’ll tell you which online community would be best. For rare cancers like sarcomas, access to a good online community is required, IMO.
e-Patient Dave says
I’ll reinforce what Gilles said about rare cancers: by the nature of things any normal oncologist spends only a tiny bit of time on them, and a good patient community spends ALL its time on that disease.
Spending all one’s time on something doesn’t guarantee being an expert nor even smart, but there’s not a doubt in my mind that if something like this hit my family, I’d seek the best scientists in the world for it AND the best patients in the world.
As I say at the top of my Patient Communities page, one thing I long for is a catalog of every good patient community in the world. When someone creates one, they’ll be wise to start with Gilles for the cancer portion! Until then, on that page I’m cataloging what people share in this e-patient requests blog series.
can’t believe it…
Have tweeted to the two European oncology orgs ECCO-ESMO and RareCare.Net to ask for specialist phsysicians…
asked too my rare cancers network.. hope to get some answers
e-Patient Dave says
George Demetri emailed, asking me to post this. Regina, the first question seems to be which type of sarcoma. I would have guessed that, since there are also many different carcinomas. Then, notice his words about “a truly expert, dedicated-to-sarcoma” diagnostic consult – without a correct diagnosis no treatment can be the right thing:
I am en route from our big sarcoma international research meetings in NYC back to Boston.
The key element here is that there are several hundred differnt types of sarcomas, and they each might have somewhat different treatment approaches and options. This is why a truly expert, dedicated-to-sarcoma pathology diagnostic consultation is so important in these tumors. This could be a very de-differentiated fat sarcoma (liposarcoma) or a malignant nerve sheath tumor, or even a rare presentation of the sarcoma known as GIST. Only a sarcoma pathologist can reliably tell those apart from each other, and there may be other even more rare types, such as DSRCT or synovial sarcoma or rhabdomyosarcoma which could present like this.
Many new research trials or even standard options depend upon a more granular and definitive diagnosis than simply “sarcoma”. Additionally, there may be extra value for choosing options based on molecular testing, depending on what a standard sarcoma pathology review shows.
Our team has all these options available, and our sarcoma-dedicated new patient coordinator is happy to help if you wish. Mr Wheelis is available at 617-632-5122 during the week, and I am cc’ing him on this email as well. We have patient-centered scheduling and Mr. Wheelis can discuss how best to proceed, along with our sarcoma-dedicated nursing team who facilitate such intake and triage matters.
Our team is here to help.
Sara Elizabeth Siegler says
I just ran a preliminary search on clinicaltrials.gov for “sarcoma” and “T cells,” and this is what came back from said search: http://clinicaltrials.gov/ct2/results?term=%22sarcoma%22+and+%22T+cells%22&recr=Open
The second trial on the list that begins next month looks pretty interesting, although I can’t make any determinations regarding eligibility w/o more detailed information about the patient and the protocol.
My advice would be to seek out cellular therapies, even those that are still being studied in clinical trials, for any advanced stage malignancy.
Marina Symcox says
GIST Support International is an excellent leader in education for patients with gastrointestinal stromal tumor. Website http://www.gistsupport.org