Im sure this has been posted prior but..... I've been thinking(with some help, u know who u are)...
here is my scenerio: 1A begin vl of 26,000. Stage 2 inflammation grade 2-3 fibrosis (I think thats right) UND at week 2 and have continued to stay that way yipee. tx 180 mcg and 1000 mg riba. Doc has decided to let me do 24 weeks tx. Only two more weeks to go. Female, 140ish lbs. good health(cept for this), caucasion, 41 yo. the doc said that with all of these factors, there is a very slim chance that I will relapse.
Bloodwork not too bad; last month WBC 1010, hemo 11.3. Not feeling too bad, did have the throat thing going on not too far back but all in all, not too bad. The doc did decrease shot to 135 when I continued to have the throat thing.
I do go to a hepatologist at John Hopkins University. supposed to be one of the best and not at all doubting that.
Any studies out there that show 24 wks as opposed to 48 with the above factors? I guess Ive been thinking and I realize that the next 6 months I will be terrified that I will relapse. Who in their right mind wouldnt?
Being you're a geno 1, I would definitely do the 48, especially cause you are not feeling bad. Your low VL is a good thing, but as long as you are able to handle the meds, I would go for it.
I am geno 2b 0 damage no weight problem, white - told by leading hepatologists that I was basically a shoe in....did 24 weeks RVR - 4 week post UND - relapsed around 8 week post.
Now I have to do 48 weeks. I don't care what the studies show as far as I am concerned all geno 2's that are NOT having bad sx should go the extra mile first tx - at least to 36 weeks cause IMO, I would rather take the chance with toxic meds than the virus causing malabsorption and everything else.
Btw my VL was high though - 8 million
I wish you the best in whatever you decide. Make sure you have peace with your decision.
I don't have the studies handy, but the 24-week shorter course is offered to some genotype 1's who have a low pre-tx viral load (<600,000 or <400,000) and who are RVR (und by week 4). Assuming you had a sensitive viral load test at week 2, you appear to meet both those requirments. If I were in your shoes, and wasn't a solid
stage 3 (you say you're between 2 and 3) I'd seriously consider the shorter course.
However, first, I'd find those studies -- there are several -- and order the full-text versions. Getting full text is important as abstracts can be lacking. Then carefully go through the studies with pen and highlighter, matching up your stats to the study stats, including what drugs were used (Peg Intron versus Pegasys). Then, bring the studies to your doctor to discuss. That is how I approached my treatment decisions.
Alternatively, if you feel you're in capable hands, you can lean on your liver specialists judgment and let him basically make the decision. I read somewhere that a certain per cent of people feel they must get involved in their medical care and a certain percent are more comfortable turning over the decisions to their doctors. Different strokes for different folks. And I'm sure many of us fall in the middle somewhere. Of course, the key to the "turning over" approach is having a knowledgeable liver specialist you have confidence in.
Lastly, just want to say that those are fantastic numbers -- low pre-tx viral load and UND at week 2. Just a terrific viral response, which the term "super responder" seems to fit.
Thanks for the comment! The first sensitivity stated that I was UND<35 and the second test I had was a bit more sensitive at UND <10 (that was 4 weeks). the rest I have had were all <35.
The fog wont let me remember if it was the inflammation or the fibrosis that was 2-3, but I do remember that neither was a solid 3. results are at home. My vls have never been above 600,000 in the past 7 years.
I do trust my docs but you always have that demon in the back of your mind saying "what if". You know you dont want to go through this **** and then relapse (no offense to anyone that has had it happen). the next 6 months will be pure he@!,waiting and worrying. what if it does? To go through it again? Not sure about that.
Thanks for the super responder comment, hope it stays that way! thanks to everyone for all the support you have given me and everyone else.
No guarantees of SVR with 24 weeks or 48 weeks for that matter.
I know many here subscribe to the "what if" -- I'll kick myself in the rear end forever if it fails-- theory of treatment.
My personal opinion is not to do "all you can" but to do all that is reasonable given your stats. One can just as easily argue that going the full-48 week course can be riskier in some cases than shortening your exposure by half to the treatment drugs. That also doesn't mean you should kick yourself in the behind if you treat for 48 weeks and don't clear, or clear and ask "what if" I only treated 24 weeks -- maybe I wouldn't have all these d*mn post tx side effects.
It's not an easy decision, none of these decisions are. You've still got time. So take your time. Look over the studies and talk to your doctor. If you feel necessary, talk to another doctor as well.
Whatever you decide, I think you should feel optimistic at this point given your stats. Most would envy a week 2 RVR with such a low pre-tx viral load.
I would never advise anybody to stop treatment early who is almost a stage 3. That's a lot to think about.
The first time you do treatment is the time you have the BEST chance at beating it. If you relapse it will be harder next time to achieve the same thing.
Nobody knows why someone relapses or has a breakthrough after being UND but it happens all of the time. You aren't having that hard a time with treatment...why is it worth the chance of only doing half the course? Even going by the old HALTC ideals...UND plus 36 weeks........You are not there at all?
I think your crazy but I hope it works for you and you remain clear.
My base Vl was 899 and was an RVR. 1a female with little to no liver damage. i did 36 weeks of tx and as of October 2007, iam SVR... I will look for the studies when I get off work to give you some info to read up on. Bottom line is that there are not a whole lot of studies out there to support 1a's stopping treatment early. But the ones that are out are very convincing and were enough to give me peace of mind. I wanted to stop at week 24 but chickened out. However, once i started having sides from He** I stopped.. Had no choice... Why dont you consider doing a little more than 24 weeks just to be sure. From what I ahve read, and people I have talked to, 24 weeks was enough.... and 48 weeks would of been too much... For myself, the sides and riba rage were unbearable. I could not even imagine going 48....
7 months post, I am feeling great and loving life. Back to my old self again and LOVING it!!
Here's another option. There is some evidence that six months of interferon after the combo therapy is helpful in RVR. So if you wanted to toss the riba at this point, doing interferon for the remainder of the time might be helpful. 1a is not as resistant as 1b, but still - it's in genotype 1 and the standard of care for genotype 1 is 48 weeks.
You DID start out at a low viral load though and go UND quickly, all good prognosticators for success. I would discuss this further with your doctor. Pull the studies and go in and talk to your docs with the studies. Get a second opinion too. Toss around the different options with the specialists which as I see it are as follows:
1) Continue the current combo therapy to 48 weeks
2) Continue the current interferon level but reduce the ribavirin for the remaining time until 48 weeks
3) Continue the current interferon level but stop the ribavirin for the remaining time until 48 weeks
4) Reduce both the interferon and the riba for the remaining time until 48 weeks
5) Reduce the interferon and stop the riba for the remaining time until 48 weeks
6) Stop treatment after 24 weeks and go to Tahiti for two weeks
Not sure about some of those options without study data to back them up.
Option 1 and 6 do have study data (not sure about the Tahiti part).
Not sure the point of option 2, unless you're having problems with anemia.
Option 3 I've never seen documented but that doesn't mean it isn't.
Option 4 I don't like at all because reducing the Peg has been associated with lower odds of SVR.
Sam with option 5. No reason to lower the Peg unless your blood tests and/or medical treatment warrant.
Going back to the Tahiti part -- that makes the most sense to me, whether you take the shorter 24 week course or the standard 48 week course. You're certainly a candidate for the shorter course given your week 2 UND and very low pre-tx viral load.
How sensitive is the test they used at week 2? Ideally you should be UND using as sensitive a test as possible. You say your doc is at J. H. and is one of the best -- maybe that's why he agrees with me.on the shorter course. But seriously, search your heart and do what you feel is right.
This doesn't perfectly fit your situation either but it is still something I thought you should probably see - Before you look up the research, keep in mind that this study was conducted on genotype 4's:
Overall, SVR rates were significantly higher in patients receiving treatment for 36 or 48 weeks than in those treated for 24 weeks (66 and 69% vs. 29%; p = 0.001 for each comparison) (Fig. 2). Relapse appeared to be a major factor in determining treatment outcomes: virologic relapse during follow-up was highest among patients treated for 24 weeks (20 of 45, 44%) but relatively rare among the longer treatment arms.
There was no significant difference between the 36-week and 48-week treatment regimens for the overall cohort.
You need two prerequisties for the shorter course. Low pre-tx viral load and week 4 RVR. (See the two studies posted by "GoldenRule above). I believe your exerpt is just a straight comparision of tx lenghts for geno 4's, regardless of pre-tx viral load and RVR. Geno 1's also do better with 48 weeks if they don't have an RVR.
Just to be clear, I'm not trying to make up Chev's mind, one way or another, and in my first post of this thread I pretty much outlined the approach I would take in making a decision. In the end, it comes down to a personal decision, as two people can look at the sam data and reasonably come to different conclusions. Personally, I happen to like the shorter course for folks with certain stats -- but everyone should really order up the full-text articles, discuss with their docs, and then make a decision they are comfortable with.
Anything that I should be concerned about?
Yes, be concerned about panic and anxiety for the next 6 months! I would never tell anyone to stop early....I would never tell anyone to extend, either.
The stats are always going to be on the side of 48 weeks tx minimum for geno 1, and 24 minimum for geno 2. My biopsy showed stage 1 grade 2.
I had a starting viral load of 11 million and am a geno 2. I was und to <50 at week three, and und to < 5 at weeks 4, 12 and 15. I made the decision to stop at week 16 when I got the heptimax back for week 15.
I was still clear last month at 7 months post.
Did I regret my decision?
I had many doubts for the first three months, hearing about relapses is difficult. I will always think I'm not worthy of this gift since I didn't fight as hard......
but I'm thankful that I was given the choice, and the idea by someone who posted the stats......
(you know who you are)
As you so wisely suggest, telling people to treat shorter is no different from telling people to treat longer. None of us here are doctors, so all we can do is offer opinions, but more important our experiences and whatever "stats"/studies are out there for us to study and then go over with our medical team. I'm sure that's how you approached things and so happy it worked out for you.
As to "I will always think I'm not worthy of this gift since I didn't fight as hard", that's poppycock!!! You're not only worthy but you made a difficult decision weighing your symptons (and the possiblity of lingering sfx) against a longer treatment. Cutting treatment shorter can often be a more difficult decision than going longer, so hold your SVR head up high and none of this not worthy sh*t :)
As to "I will always think I'm not worthy of this gift since I didn't fight as hard", that's poppycock!!!
Agree with that one completely. Man, this disease seems to generate such moral high ground all over the place. This is a virus. A medical issue. Like the flu. People don't "deserve" to get and they definitely don't deserve to keep it. I am always over the moon when anyone clears the damn thing, PARTICULARLY if they have less illness and fewer side effects in the process. I would love to see a note on here some day about somebody having cleared it naturally in the first two months. Haven't seen that one yet. But I'd be overjoyed. I may be afraid for people if they stop tx'ing "early" but if it works there is nothing that makes me happier.
My tx "hero" here was a guy here named "Rifleman". He was a geno 2, who decided he'd try the short 12-week course, if he was UND at week 4. He was UND at week 4, only did 12 weeks, and is now SVR. Don't think he missed a day of work. God bless Rifleman and anyone else who is lucky enough to kill this virus the "easy" way. Most of us are not.
Thanks for all the comments! Sorry but I have "dial up" internet at home and it it SLOW (yes, in the boonies here) and was off for Vet day Monday and took off work yesterday( fiancee's dad came home from nursing home to live alone after stroke, NO STRESS HERE!!!)
Anyway, I truly appreciate everyones comments. I go back to the doc on the 19th. Last shot is this Friday!! WOOHOO! I will discuss with them again 24 vs. 48. I do truly trust my docs and am looking more towards stopping at 24 as suggested by them.
Yes, if I do not decide to keep treating the next 6 months will be very very scary. Anxiety will set in worse that what it is. But have had that all along. I mean, who doesn't have it? I would venture to believe that all of us who are currently treating or deciding to or have stopped treatment have anxiety. Just part of life...
I do have a hard decision in front of me..... will look in my heart and make the decision and just hope for the best! That is all I can do at this point. Want to feel normal again! Well almost, was never completely normal LOL!!!
Good luck with your decision. I'm really not a fun of the stopping early scenario because it's so risky, especially with your stage 3, but I admire your courage. It's a very huge gamble with your life and I would be way too chicken to ever have contemplated it in a million billion years. Shoot I did 72 weeks and was afraid to get my PCR done. Then I did my 6 month at 9 months. I was just too afraid to hear any bad news.
That's why the world goes around though - different strokes for different folks. People think I am a warrior but I'm a big giant crybaby. :)
Guess I am just tired of being tired. single parenthood, work, wanting to get on with life, feel like I am a bit#* at work(heck I know I am), being depressed, weak (LOL! tried kicking my 12 year old son some balls for practice who was goalie in county championship soccer game, still hurting). Just want to feel good again and the docs think I will be fine and not relapse.
Yeah, if I relapse I will kick myself in the A@#!! But your right, thats what makes the world go round, different strokes. I just hope for the best and will be doing alot of praying! Hope everyone does the same for me.
If I were in your shoes, I wouldn't cut the tx protocol to 24. I h ad a VERY low viral load of 90,000 did the 48 weeks and relapsed 6 mos. post. Now I'm getting ready to go for 72. I wish I had done 72 to begin with I may not be in this boat right now.
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