I heard from the hepatologist/liver transplant specialist's office today - they changed my appointment but it's only a matter of a few days. I spoke with a person yesterday who is a gastroenterologist; this particular medical specialty often takes care of people with HCV from diagnosis to standardized treatment. For example, when I was on Interferon/Ribavirin (2 courses, 1 24-week and 1 48-week) a gastroenterologist managed my care. The need to see a hepatologist arises when treatment fails and there are no further options - which describes me at this point in time.
He (an acquaintance, not really a friend) told me he recently returned from a HCV conference and believes there may be other alternatives for me. New clinical trials are showing great promise, but I've been excluded in the past because I am not treatment naive. "Treatment naive" is a research term used in a double-blind clinical trial where neither the researcher or the patient knows if they are receiving standard treatment or the new medications under experiment. If you have been through treatment, you are not "naive" to treatment; you know the symptoms the medication produce and therefore would be able to detect if you were on standardized vs. experimental treatment. However, when a prolonged study begins to show 100% cure rates in those receiving the experimental drug(s), it become unethical to withhold that option from those who are not treatment naive in order to save their life. He indicated this is indeed the case with a new treatment option consisting of 4 medications - two are the meds I already took and two are new medications.
The hepatologist will be aware of all this news, and the hepatology department at Henry Ford Hospital is world-renowned for their expertise in liver disease. The doctor I'm seeing is most likely a participating researcher in the current study OR she knows all about it and how to get a patient into the experimental group. I am suddenly feeling a ray....no a huge BEAM of hope for myself. I cannot reverse the damage done to my liver, but I know that getting rid of the virus would help me feel much better. I've gathered all necessary items for my appointment: slides from previous liver biopsies, CD-ROM's of CT scans and reports they requested me to bring along. Now I am darn excited to see her! There is HOPE! And darn it all - I am going to fight with all I've got. I want to see my children marry. I want to know my grandchildren. I want to grow old with my wonderful husband. Hope hope hope. I'm hoping like crazy over here!
Hope is beautiful and so are you..cling onto it!!!!!!!! I am!!
ReplyDeletesue!!!!!! one HUGE HUGE HUGE smile over here!
ReplyDeleteclappin' my hands and hoppin' up and down!
HOPING RIGHT ALONG WITH YOU!!!!!!
It's nice to see such a well written informative blog on HCV and you're even in my neck of the woods - Michigan. I run Greenview Hepatitis C Fund (www.hepcfund.org)out of Ann Arbor. We raise money for HCV research at the UM. I would love to have you write on our blog,too. I have been posting interesting studies that I find on Google Alerts, but I need somebody who is in the trenches to give a more personal take on all this. Would you help us?
ReplyDeleteWishing you the best of luck. Debbie Green