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I have very good news to share, especially for those who are on treatment
now (DebSue, ScubaGuy, Neil, and others), and for those considering tx.

I am sharing this info so others dealing with tx side effects can see some
light at the end of the tunnel. So they may consider some alternate
methods of dealing with treatment side effects. So that others
considering current treatment may have some hope in its efficacy.

To encourage those who are suffering the side effects of the virus or
treatment to minimize them and possibly fight the virus with exercise.

For the last 6 months I had been taking Pegasys with Copegus 800mg/day,
my last shot was 3 weeks ago, my last Copegus tablets were 2 weeks ago.

The results from the third month PCR (600 IU/ml sensitivity) was negative,
and this was very encouraging.

The PCR (from two labs, 50 IU/ml sensitivity) from 2 weeks ago, end of tx,
was also negative. :bouncing:

I know that I may have 6 months of lingering side effects to deal with,
primarily generalized pruritis/eczema from the dry winter air, occassional
mild nausea and aching, and some anxiety. And that I will be
retested to determine SVR at 6 months then again at 1 year.
SVR is not signed, sealed, delivered.

BUT ...

SVR IS IN MY MIND'S EYE.

During this time I ran 4 to 6 days per week, from 4 to 13 miles
per day usually at 6 am, totalling about 800 km. On my days
off, my anxiety, nausea and aching were worse and I would
sometimes have to take alprazolam for the anxiety or tylenol
for the flu symptoms if alternate exercise or walking or
drinking plenty of water didn't help. Prior to tx I had been
running 3 to 5 miles per day for a year. .... Dragon Runner

I did many things to boost my moral and gain a winning attitude,
much of my time being spent outdoors (THANKS, NEIL, wherever
you are, hope your tx works out), canoeing and camping with
other gung-ho people and young teens, and dragon boating
on a gung-ho mixed competitive team, taking first place in a
number of competitions. I protected myself from the sun as
much as possible (its amplified when you are on water)
and consumed a lot of water. ... Dragon Rider.

I avoided alcohol totally, minimized exposure to toxins, ate
very healthy, limited supplements to 2 x 500 mg EsterC and
2 x 400 mg VitE, drank 1 cup of gatorade on each run, plus
lots of water.

Took a couple tylenol on shot nights, otherwise avoided it.

Drank a liter of water through the night, many trips to the
toilet, but drinking water kept the aching down.

Didn't miss a day of desk/computer work, although I took
a short nap every morning.

I was a nonresponder (partial responder) to previous
Rebotron treatment. 3A, about 200 lbs, 48 years old.
Pre-rebotron viral load was 2 million IU/ml, dropped to
1000 IU/ml at month 3, PCR was positive at 6 months.
Rebotron was injected 3 times/week with 1200 mg of
Ribavirin per day. Side effects were much worse than
from Pegasys, consumed over 500 XS tylenol to deal
with nausea and muscle aching.

Waited 1 year then decided to start trial Pegasys/Copegus.
I had 8 million IU/ml viral load, level 1+, stage 1+, per biopsy.

The running helped me lose 40 lbs over the tx period
to get me within the optimal weight range for tx efficacy
(poorer response if over 85kg). I swear it helped with
the Pegasys/Copegus side effects, but these are much
milder than from Rebotron, for me. Yet, towards the
end of Pegasys treatment, and the last couple weeks,
the aching and anxiety increased, but they are edging
off now. I am glad I don't have to take the drugs another
24 weeks (best wishes to those of you who do), but I
would continue if I had to. I hated having the virus.

I ran 8 km this morning in a few inches of fresh, soggy,
snow, feeling improved energy/oxygen.

Then I got the news at noon (PCR neg, HGB up). :p

I ran and rode those millions of millions of little dragons
out of town and they aren't welcome or coming back.

Thanks to everyone on this board for your support,
advice and camaraderie, especially Neil, wherever
you are!

Happy Holidays to you all and the best in 2004 !!!!

Running Dragon Rider

Diana :wave:
[QUOTE=dianasaska]I have very good news to share, especially for those who are on treatment
now (DebSue, ScubaGuy, Neil, and others), and for those considering tx.

I am sharing this info so others dealing with tx side effects can see some
light at the end of the tunnel. So they may consider some alternate
methods of dealing with treatment side effects. So that others
considering current treatment may have some hope in its efficacy.

To encourage those who are suffering the side effects of the virus or
treatment to minimize them and possibly fight the virus with exercise.

For the last 6 months I had been taking Pegasys with Copegus 800mg/day,
my last shot was 3 weeks ago, my last Copegus tablets were 2 weeks ago.

The results from the third month PCR (600 IU/ml sensitivity) was negative,
and this was very encouraging.

The PCR (from two labs, 50 IU/ml sensitivity) from 2 weeks ago, end of tx,
was also negative. :bouncing:

I know that I may have 6 months of lingering side effects to deal with,
primarily generalized pruritis/eczema from the dry winter air, occassional
mild nausea and aching, and some anxiety. And that I will be
retested to determine SVR at 6 months then again at 1 year.
SVR is not signed, sealed, delivered.

BUT ...

SVR IS IN MY MIND'S EYE.

During this time I ran 4 to 6 days per week, from 4 to 13 miles
per day usually at 6 am, totalling about 800 km. On my days
off, my anxiety, nausea and aching were worse and I would
sometimes have to take alprazolam for the anxiety or tylenol
for the flu symptoms if alternate exercise or walking or
drinking plenty of water didn't help. Prior to tx I had been
running 3 to 5 miles per day for a year. .... Dragon Runner

I did many things to boost my moral and gain a winning attitude,
much of my time being spent outdoors (THANKS, NEIL, wherever
you are, hope your tx works out), canoeing and camping with
other gung-ho people and young teens, and dragon boating
on a gung-ho mixed competitive team, taking first place in a
number of competitions. I protected myself from the sun as
much as possible (its amplified when you are on water)
and consumed a lot of water. ... Dragon Rider.

I avoided alcohol totally, minimized exposure to toxins, ate
very healthy, limited supplements to 2 x 500 mg EsterC and
2 x 400 mg VitE, drank 1 cup of gatorade on each run, plus
lots of water.

Took a couple tylenol on shot nights, otherwise avoided it.

Drank a liter of water through the night, many trips to the
toilet, but drinking water kept the aching down.

Didn't miss a day of desk/computer work, although I took
a short nap every morning.

I was a nonresponder (partial responder) to previous
Rebotron treatment. 3A, about 200 lbs, 48 years old.
Pre-rebotron viral load was 2 million IU/ml, dropped to
1000 IU/ml at month 3, PCR was positive at 6 months.
Rebotron was injected 3 times/week with 1200 mg of
Ribavirin per day. Side effects were much worse than
from Pegasys, consumed over 500 XS tylenol to deal
with nausea and muscle aching.

Waited 1 year then decided to start trial Pegasys/Copegus.
I had 8 million IU/ml viral load, level 1+, stage 1+, per biopsy.

The running helped me lose 40 lbs over the tx period
to get me within the optimal weight range for tx efficacy
(poorer response if over 85kg). I swear it helped with
the Pegasys/Copegus side effects, but these are much
milder than from Rebotron, for me. Yet, towards the
end of Pegasys treatment, and the last couple weeks,
the aching and anxiety increased, but they are edging
off now. I am glad I don't have to take the drugs another
24 weeks (best wishes to those of you who do), but I
would continue if I had to. I hated having the virus.

I ran 8 km this morning in a few inches of fresh, soggy,
snow, feeling improved energy/oxygen.

Then I got the news at noon (PCR neg, HGB up). :p

I ran and rode those millions of millions of little dragons
out of town and they aren't welcome or coming back.

Thanks to everyone on this board for your support,
advice and camaraderie, especially Neil, wherever
you are!

Happy Holidays to you all and the best in 2004 !!!!

Running Dragon Rider

Diana :wave:[/QUOTE]

I just had to say Congratulations to you Diana! I cannot imagine the elation you must be feeling after such a hard won battle. Just the thought of achieving an SVR seems like a miracle to me let alone actually doing it. You worked very hard on doing all the right things to make it work for you. Way To GO!!!! I am so very happy for you...

Happy, Happy Holiday's,

Diann
Dolly

Thanks for the implied SVR, it is my goal,
and I am thinking only positive about reaching it.

I have been feeling very tired the past few days, everything
has taken a lot of energy. I can eat endlessly and without
guilt, I have an enormous appetite.

I really want to celebrate and have a drink, it is the
season to be jolly, but I always keep in mind that I am
chalk full of drugs, and that I am jolly even without
the booze. Besides, alcohol would be hard on my
liver and I have to give it a few years to recover from
the fibrosis it has suffered. I am even careful about
fruit cake which is often laced with rum, not to mention
those liqueur filled chocolates.

A doctor once told me not to worry, that I will live a
very long life. I expect he is right, despite the ravages
I have suffered.

I haven't relied on many people during treatment on
Pegasys, live alone and did all the injections myself,
never missed a pill. My parents and a couple friends
were the only ones who knew and gave support and
encouragement, in addition to excellent support and
encouragement from the medical staff.

On the day I got the news about the third month results
I had wished on a falling star in the morning, while
watching the aurora borealis, it was beautiful. Later
that evening, after getting the negative PCR test result,
while walking and looking up at a clear starlit sky, I
swung my right hand down and around, up to the left,
exclaiming "yes" and the circular motion of my hand
was completed with a long trailing shooting star moving
from left to right. WOW!!! Who would believe this????

So I made another wish and it came true for XMAS,
and, I expect, overall SVR.

What a gift!!!

I only hope that others have as good fortune as myself
and that a more tolerable cure may soon help those
who do not tolerate or respond to current treatments.

Diana
Diane,

Congradulations!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
You are an insperation to all of us on tx. Your good news is our good news. I know your SVR is a done deal. Just like I know mine is. Just waiting for confermation.

thanks for the encouragement :wave:

Randy
Whoooo!!!! Hoooooo!!!
I'm am so happy for you. What a wonderful feeling you are having. I can't wait to complete TX. Jesus has been very busy this year during his birthday. He has been watching all of heppers and I am so happy he has given us all this chance to enjoy our lives again. Keep up with the new lifestyle. Don't give in to temptation. :wave:
Love,Peace and Happiness to you
Thanks for the encouragement.

Temptation comes in strange disguises.

The other night at a party I ordered a soda and tonic. I sipped the drink as soon as the waitress brought it and I asked her if it was just soda and tonic and she realized she instead brought gin and tonic !!!! She apologized profusely and brought me a soda and tonic and two large glasses of water I added to the order which I first consumed immediately to dilute the bit of gin I ingested. I have NO problems with striking alcohol from my diet, it is unnecessary calories and damages the liver, negates tx.

I used to enjoy gin and tonic now and then and I now drink soda and tonic on such occassions because it is less calories than straight tonic and it tastes sort of like g&t. But in retrospect, it is not a good drink to order because it could be difficult to taste any misappropriated alcohol in the tonic.

I hope you manage all the side effects of treatment, they can be challenging, but they can be overcome.

Merry XMAS and the BEST in 2004

Diana
Diana :wave:[/QUOTE]

Diana,

Thanks, so much, for sharing this! Congratulations!!!! Being oat the beginning of the spectrum, and you at the end, I can't even imagine how excitedly happy you must now be feeling! True holiday blessing! YAHOOOOOOOOOOOOOOOO!!!!

Your message brings much hope to the, like me, newly initiated club members ;) . I'm sure that those in current Tx will find it encouraging, too!

Thanks again, and HAPPY HEALING!!!!
Thanks, Copper

The tx is still in me and it still causes a bit of anxiety, but there have been periods of time when I feel full of energy and with no side effects, when I feel quite elated over the results, they are everything I hoped for and worked towards.

It is 3 weeks since I stopped Pegasys. My energy levels are rebounding (not tired in the day anymore). I am able to run stronger and faster. The eczema flareups are receding. My anxiety is lessening. Night sweats are almost gone as well as muscle aches. These sides would take longer to dissipate if I weren't exercising. Despite all the sweets and treats, I am eating reasonably well. I will rebound well without the virus and the tx in me. Am interested in seeing what kind of energy level I have in a few months, because I did pretty good on treatment and when I had the virus. Will be bouncing off the walls (might join spidey).

Hope all heppers, pre-tx, on-tx or post-tx treatment have a
Happy Holiday, success in your prognosis, and the best in 2004!!!

Diana
Congratulations, Diana!


This is the best, most encouraging treatment story I have heard in a long time. What a pleasure to see someone get through it all with such a positive approach and postive outcome.

And the best news of all, I think, is that the symptoms are receding, and you feel yourself improving, getting stronger. The future will only bring more good news, I bet.

Best of everything to you. Thanks a million for sharing all this good news with us.


Happiest New year to you.


sean
Sean

Thanks for your encouragement. I thought you would enjoy seeing a positive outcome. I did not get as yahoo about the 6 month results as I did when I got the 3 month PCR results, I was having a lot of fun and getting a lot of time outdoors in the sun with a whole lot of people. Its winter now, a lot colder, fewer team events, and much more time indoors.

The side effects from treatment are dissipating slowly, some days I feel absolutely supurb (ran 15km two days ago when it was snowing and -7C, the first 7km with a 75 lb black lab, rested 1 day and again 7km outside at -16C and 4km tonight). Some days I feel some nausea and aching, usually on days I don't exercise. I am surprised I can go run in those cold temperatures and not collapse, the drugs can have negative effects on lungs, heart, cardio system, but I suppose all the fitness over the years has paid off, despite having been overweight. Put a few pounds on the past couple weeks, hope its just all the season's sweets and that my exercising burns it off again.

The running helps me keep a positive outlook, because when I finish a long run, or make major achievements, I am not only high from the adrenaline and endorphins, but I am high from the psychological effect of "winning". I figure this is a good diversion for my overactive brain, to keep it occupied/focussed on an activity, and it helps it to build a positive outlook, even after treatment, because I still have the SVR results to look forward to.

I need to get away, and am looking forward to a month long overseas trip in a few months to visit siblings and their kids and to do some sight seeing. I deferred a long trip because I would have been travelling for extensive time with the treatment drugs and wanted to minimize stress on my system and keep a consistent, winning diet and exercise program going throughout treatment. It helped pay off.

Hope you had a good holiday/trip whereever you went the past couple weeks.

The best to you in 2004!!!!

Diana
You are an inspiration, Diana!

Enjoy your trip and be sure to check back in when you get back.

I'll be looking for your report when you return.

I am glad you are feeling so good and that the outcome was a good one.

thanbey
Thanks Thanbey

I can only hope to inspire as others on this board have done for me, like yourself, Sean, Neil, Terry and many others.

My trip won't be until April or May, I plan to keep in touch at least until then.

I intend to share my experiences with some of the local community as time permits. Previous volunteer work got to be a bit too much, I get too involved and end up not having time for myself. A local outdoor organization is going to honor me in a few weeks for a ton of volunteer work I had done for many years up until my DX, worsening symptoms and TX started a couple years ago. Another much needed moral booster. And I try to help a friend out who is recovering from cancer and is so negative, tends to drag me down, but I have a lot of positive energy to share so, what the heck, go for it and maybe I will help my friend and improve myself.

It is easier to say than to do. Actions count more than words. Thanbey, you are helping a lot of people out.
Thank YOU.

Diana





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