Welcome to the delphiforums sister-site to Shane's MySpace main site, found HERE
If you are a patient or a caregiver to someone with Synovial Sarcoma, you may have already found that the information is either confusing/conflicting or downright missing... you may have already found that it is difficult to find others with the same diagnosis, and this is because of the rarity of our kind of cancer. Maybe you have tried contacting others via other general sarcoma groups or maybe you are reaching us first. Either way, you have come to the right place for lots of information (organized in Delphi's 'easy to find' folder format), and for support. Remember, when reading statistical information, and that 'The Median Isn't the Message' . YOU ARE MORE THAN YOUR PROGNOSIS!!
If you have found us here in Delphi first, you may also want to go say a hello over at our MySpace group, or in the 'All Discussion/conversation' folder here. If you are a member of our MySpace group, and are visiting our files here in Delphi, the below information will be very helpful to you:
We have JUST A NOTE TO LET EVERYONE KNOW:
In our space (here in Delphi), is a folder called 'ALL DISCUSSION/CONVERSATION' at the top for questions, comments, hellos and general talk, but for the most part we use this forum to RE-post our info... that way we don't lose anything. I know that a lot of you are curious about some of these issues and it is a little hard trying to sift through all of the posts in the myspace format... and Delphi folders make it easier.
We have archived, and are continuing to archive, ALL (EVERY LAST ONE) of our information posts in Delphi. Here we are able to archive all our posts in folders with topics like:
Sarcoma Itself (this spot is just about the science and facts that ARE sarcoma)
Gen Cancer Science/ Terminology (from reading pathology reports to med. terms)
Gov. Info. / Insurance Issues (Beurocracy stuff to Insurance complexities)
Mainstream Therapies (The things usually tried first, before clinical trials & alternatives)
Alternative Treatments/technology (also see diet/exercise/lifestyles for food choices)
Studies / Clinical Trials (When the usual treatments fall short)
Caregiver Information (caregivers have needs too.)
Intellectual/ Emotional Issues (Coping, understanding, handling, bearing with: hardships)
Side Effects/Side Effect Meds (Side effects of cancer, treatment: biological/medical)
Diet / Exercise / Lifestyles (you will find alt. stuff here, too, but in food form.)
Other Support Sources (Other places you can turn to for help and support)
Search/Research Sources (resources for carrying out your own searches, trials etc.)
Miscellaneous Information (anything else)
In delphi, the things you HAVEN'T seen-- show a star next to the title.
All of our info. is in the 'MESSAGES' tab at the top of the page, and the chat room is available under the 'CHAT' tab at the top as well.
We think you'll find this all very user friendly and info easy to find. If you have any suggestions, feel free to post it in the 'ALL DISCUSSION/CONVERSATION' folder.