So, the CCF Registry is for patients and the Mayo Research Study is for researchers? When will the Registry be available for input?
BTW, I just filled out the Mayo forms. Long winded and very general. Written by a researcher and not by a patient. EX: The section on drinking tea was based on conventional tea without ackowledging herbal teas. There was a question on weight change that seemed to assume you weight would either decrease or increase, not both, in six months. No questions on alternative treatments such as chiropractic for back pains and acupuncture. Maybe they will get info from the hospital treatments after the release is processed.
Will try Tuesday to get a blood ample to send to Mayo when I get my next chemo. Have not had an overwhelming positive response of support from the hospital yet.
Fighting with dignity, not desperation.
Live, Laugh, Love