November 2000
<Sponsor Banner Available> Your name here & info in website archive if you sponsor an edition of this newsletter ($150)

Support Group Members Interact (No Guest Speaker) -- November 15
Meeting Agenda:
6:30 p.m. (sharp) - Theme Song: I Will Survive
6:35 - 6:45 announcements
6:45 - 8:00 (or earlier) give and receive support
8:00 - 8:30 (or earlier) questions/answers 'til we adjourn

We will share our concerns, strengths and ideas.
Location: SCC Classrm 3&4 (see "Our Meetings" below right)

Upcoming Agendas:

Dec 20 - SCC Classrm 3&4 give & receive support, election of leaders
Jan 17 - SCC Classrm 3&4, To Be Announced
Personal Messages:
Does anyone have Gastritis, H Pyloria, or Gastroparesis along with Hepatitis B or C? If so, please call Julia @ 916 925-7434 or email "Julia Richardson" <makeupartist@lanset.com>
* Dr. Pimstone spoke Oct. 18 to I Will Survive (following notes not reviewed)

Basics of hepatitis C infection
...New data: Spontaneous recovery from acute HCV infection occurs in about 30% of cases. A liver to be transplanted can be split between a large person (right lobe) and a small person (left lobe), but because of the added logistical and technical difficulties, this is
Our Meetings: 3rd Wednesday of every month at one of the following:
(SGH) Sutter General Hospital, 2801 L St., 28th & L -OR-
(SCC) Sutter Cancer Center, 2800 L St (Across from Sutter hospital)
*(Meeting space provided by Sutter/CHS does not necessarily constitute endorsement or sponsorship)
Parking: 2 story structure across from hospital (28th & L Streets)
Contact Us: Phone number: (916) 491-4942
Our Web Site> www.sacmall.net/transplant/hepc.html
Email: dck@innercite.com (include "I Will Survive" in subject line or your message might be delected before being read).

If you want to be included on our mailing/emailing list and you can afford to include a check, make it to Eve Cragen, Treasurer I Will Survive, P.O. Bx 2180, Loomis, CA 95650, for:
$24 if you want the Newsletter by U.S. mail
$15 if you get the Newsletter from the website (if you wish, each month we'll email a link to you)
$ 0 if, right now, you can't afford to pay dues. In which case "I Will Survive" will mail monthly Newsletters to you. Please contribute to the "Donations" Box at the meetings as you are able.
not typically done. The imbalance between numbers of livers available vs. needed will get worse.
...The success of treating HCV with interferon (INF) has incrementally improved over the last decade accumulating from 6% sustained response in 1990 (3 million units 3 x wk) to 30% sustained response in 2000 (pegylated interferon (peg-INF) with ribavirin (RBV)).
...New data: Early treatment with interferon and ribavirin does NOT result in improved initial nor sustained response.
...Sexual transmission (about 3% of stable relationships) is likely related to some other medical condition (break down of some other aspect of skin or tissue). Exposure of an open sore or even abraded skin to infected blood is likely the reason that chronic HCV is found in 10% of Vietnam veterans and why all of us must be careful to avoid infecting others. Infected health care workers, in Dr. Pimstone's experience have, to his knowledge, transmitted no new cases.
What's coming up in the next several months:
...The measurement of viral load in "copies/ml of blood" will soon be replaced by "International Units" (I.U.) in order to normalize what has been previously referred to as laboratory error.
...The philosophy of treatment in the U.S. is moving toward a model (more widely embraced in Europe) directed toward treating the disease, but, in the event of failure, to treat the effect of the disease (damage to the liver).
...Clinical trials of triple therapy (peg-INF + RBV + amantandine) will begin soon.
...In the next few months, the FDA will approve peg-INF as the standard course of therapy. At the June 2000 international consensus meeting, it was categorically affirmed that peg-INF + RBV is the present preferred course of treatment, but it will be at least 2 years before the FDA finishes its approval.
...Doctors presently have a menu of indicators ranging from genotype (most important indicator) through duration of infection, age and gender of patient, etc. (somewhat less important indicators) by which to tailor the best course of therapy. However, pharmaceutical companies don't provide packages that allow free selection from among those alternatives.
3 years into the future:
The only apparent disadvantage of peg-INFversus standard INF will, in about 3 yrs, be addressed by starting treatment with standard INF for the first several weeks (long enough to test for tolerance) and then changing to peg-INF.
5 to 10 years into the future:
...The life cycle of HCV RNA and the unique protein programmed to make HCV RNA are now known. So, enzyme targets can now be identified and selected. "Ribozyme" is being designed to make 'mirror images' of those targets and to bond with, and therefore destroy HCV RNA one strand at a time.
...The progress in treating hepatitis C is tending to track the progress that was made in treating hepatitis B. When the HCV vaccination becomes available, it will probably work by flooding the body with disabled HCV DNA to provoke a massive immune response and so create HCV antibodies capable of defeating a subsequent infection.
In his responses to questions from the audience, Dr. Pimstone noted that:
...Even though removed from the blood by treatment, HCV may remain in other body tissues. Apparently a sustained response cannot be achieved without the blood being virus free for enough time to allow virus to be purged from other tissues which may explain why treatment must extend to 6 months (genotypes 2 and 3) to 12 months (genotype 1).
...When clinical evaluation and needle biopsy of the liver are in disagreement, a laparoscopy may be used to obtain a better representation of the stage of disease throughout the entire liver.
...After withdrawal of treatment, if there is no detectable HCV RNA at: 6 months, about 97% of patients have achieved a sustained response 1 year, almost 100% of patients have achieved a sustained response.
...Early response to treatment is a predictor of sustained response. Checking viral load at 4 to 6 weeks and then again at 12 weeks after initiation of combination therapy is useful in assessing not only early response, but, in responders, also provides mental reinforcement.
...When muscle aches occur, the patient's Mg, Zn and/or CA levels are likely depressed.
...There is limited (but more than there used to be) help for patients who have been afflicted long term with adverse effects due to interferon treatment.
If you have no money or insurance call:
Sacramento Clinical Trials
Schering's Commitment to Care 1-800-521-7157
Infergen's Safety Net Program 1-888-508-8088
Roche's Patient Assistance 1-800-443-6676
Dr. Gish, et al, call: Leslie Davison, (916) 443-0534
Dr. Pimstone UCD Med Center, (916) 734-1557



Return to Hep C Support Page

Web Page Design and Hosting by
SacMall.Net - Sacramento, CA