I recently had six month after treatment blood test to determine
if I achieved a sustained viral response or SVR. The results came back today
and the Hep C virus is back. My viral load is currently at 1 million IU/ml. This completely
sucks. 18 months of interferon and ribavirin including 5 months of an
experimental polymerase inhibitor RG7168 aka RO5024048 that produced the side effects of weight
loss, depression, inability to concentrate, lack of energy, memory going to
hell, anemia, and I'm sure others, that the memory problems prevent me from
remembering; all of this to achieve nothing. It is getting hit by the million pound shit-hammer all over again.
I knew at the
beginning that the traditional therapy only resulted in a 45% chance of
clearing the virus. So when I had the chance to get into the trial of the RG 7128 aka RO5024048 polymerase inhibitor which, in
early-stage experiments had demonstrated a rate of clearing the virus of up to
75%, I jumped at it. I'd hoped that the experimental drug would clear the
virus. Even after the viral breakthrough that resulted in my expulsion from the test group I
still thought that transitioning to standard therapy after the initial
success of the experimental drug might give me a small leg up on clearing the
virus.
Perhaps the fact that it took 12 weeks for the traditional
interferon/ribavirin therapy to bring my viral load down from only 40,000 IU/ml to clear
should have tipped me off. Maybe it should have shown me that the strain of virus that I have would
be resistant to my own immune system and traditional therapy and I would
perhaps be more likely not to clear the virus then to succeed, but no one wants
to face that possibility. When you have already been in a process for six
months and you've already faced the side effects and found that, to a point,
you can handle them; and you believe you have a chance of clearing the virus;
and you don’t know what your health insurance is going to be like in another
year or two or whenever a new therapy might come online; and the fact that you
have insurance now; and you’re stubborn and you're optimistic; it all puts
you in a mind to say I'm going to see if sticking this out will succeed in
bringing me to a sustained viral response and a cure.
Well it didn't. So in a sense I look at the last two years
of my life, the 18 months on the therapy and the six months beginning to
recover from it until the day of the test, as being wasted. I did not get much
accomplished during those two years. While I was able to do very good things at
work (including expanding the scope of my operation, systematizing and streamlining
all of the processes, integrating a part-time person and training them in
handling the basics of the operation, and increasing sales and average of 25%
per year), that is cold comfort. Just doing that, just functioning on a
day-to-day basis and going to my job eventually took so much energy that it
left little time and little energy for any part of a personal life. My work and
efforts as a sculptor were minimal, my ability to do things with my friends and
family were cut way down by the fact that it was exhausting to do anything for
very much time at all. It all infuriates me even though I knew that it was only
a 50% chance at success. I don't think anyone ever enters a situation like this
thinking that they're going to fail and I certainly didn't. The fact that the
therapy did not work leaves me feeling somehow cheated. It's not rational, but there it is. You feel that if you spent that much time, that much energy (or lack of it) invested that much hope and effort, something better should have happened. It didn't and I feel somehow empty.
All that being said, on the good side all my liver functions are normal. My doctors tell me that the results that they're getting
from the liver tests would indicate that the time that I spent clear of the
virus during the therapy, (which totaled about 12 to 14 months out of the 18),
allowed my liver to begin to heal itself. The swelling is reduced. It is
functioning well and I have bought additional time with a healthy liver. I also
learned that I can handle the therapy. I learned that the side effects I got
with the standard interferon ribavirin
chemotherapy and with the RG7128 are ones that I can manage. I know that
a lot of people have a much more difficult time than I ever did during the
traditional therapy. There are people who are so exhausted they can barely
move; people whose anemia is frighteningly intense; people who have much more severe
depression; people who lose even more weight than I did; people who have even
less energy and people whose cognitive facilities and memory decline even
further than mine. I realize that the ones who have it far worse than I did
must feel even more empty or betrayed or depressed when they find out that it
didn't work. Because as difficult as it was for me, if I had gone through even
12 months of the sort of difficulties that others with this disease undergoing
the same therapy went through, I don't know if I could ever face doing it
again.
I'm sure at some
point I will do it again. I don't like the idea of managing this disease. I
don't like the idea of having something in my body that is gradually destroying
my liver, breaking down my cognitive functions and creating in the long run a
less energetic less mentally sharp individual. I don’t like the possibility of
developing serious liver problems that might include liver cancer, cirrhosis and
result in the need for a transplant. Though
my doctors told me that given my liver results I am the sort of person
who is more likely to die with hepatitis C than from hepatitis C, I don't want
to have it at all. The idea that a lifeless particle of protein wrapped around
some DNA is working its way through my body destroying my liver doesn't fit my
disposition. So I will try again at some point.
I don't know that
I will ever try interferon therapy again. It is extremely devastating and I
don't know if I can face it even though I do suffer it better than many other
people. There is a tremendous amount of research going on and a lot of that is
oriented towards non-interferon drug combinations to attack the virus. There's
a lot to look forward to and I know that I'm in good shape to see where it
leads.
It's still depressing, it still sucks but you buck up
and handle it the best you can. Even though I've been whining for most of this
post, I know that my life is a hell of a lot better than a lot of other people in the world and especially a lot of other people with Hep C. Besides, Spring Training is right around the corner and how can you stay depressed when pitchers and catchers report in only six weeks,
Thanks, Dear
ReplyDeleteThank you for sharing your testimony. It helps those of us going through to be more aware of what to ask and look out for. There is hope on the horizon that doesn't include the nasty interferon. I believe we will be reading a more positive result from you in the future :)
ReplyDeleteHi there, merely wanted to mention, I enjoyed this article. It was pretty inspiring. Carry on submitting! http://www.exoticcarrental305.com
ReplyDeleteI was diagnosed as HEPATITIS B carrier in 2013 with fibrosis of the
ReplyDeleteliver already present. I started on antiviral medications which
reduced the viral load initially. After a couple of years the virus
became resistant. I started on HEPATITIS B Herbal treatment from
ULTIMATE LIFE CLINIC (www.ultimatelifeclinic.com) in March, 2020. Their
treatment totally reversed the virus. I did another blood test after
the 6 months long treatment and tested negative to the virus. Amazing
treatment! This treatment is a breakthrough for all HBV carriers..