12 Week Viral Load 950

[skersj]

Since at 12 weeks I am still detectable, what are my chances of SVR?

[zazza]

Dr Thomas Berg from Germany says 20-30% if you do 48 weeks. You can increase these odds by extending treatment to 72 weeks. Here is a link where you can read about studies on extended tx.

http://www.liverfoundation.org/downloads/alf_download_321.pdf

[zazza]

Also your viral load at week 12 is beneath 6000 IU/ml, which is the cut-off for the group of patients which according to dr Berg benefit the most from extended treatment.

[skersj]

Thank you! I really appreciate the link.  It was exactly what I needed to keep my hopes up! I am really starting to get nervous. I started tx at 2 million ; 4 wk - 297,000, 8wk - 11,0000, 12 wk 950. I go back Dec 19 and all I want for Christmas is UND!!!!!.
I am female, 50, 5'5", 135 lbs. , take 14th shot Sunday, tolerating tx well, still able to play competitive tennis 2-3 times a week. Just get really short of breath! My hemaglobin stays around  9.4 though. White count was hovering around 1.6 but now up to 3.4. I did have a rough spell wk 7 - wk 10. Muscle soreness, headache, fatigue etc. I think (hope) I have learned to pace my self. But I have to admit, I am on the look out for another bad spell like that again. I try to stretch my muscles now so they don't ball up like that again.

[Trinity4]

There's a few us in the 72 wk club.  No big deal.  Each week is one more behind you.  It can be overwhelming to look at it as 72 wks total treatment duration.  I don't think about in those terms anymore, just glad when I get through the next week.  Treatment pitfalls pop up weekly, so those are they hurdles we have to concentrate on.  
Good luck and if you clear the virus at 24 wks, you are considered an official slow responder and a good candidate for extention.
Trinity

[zazza]

Playing tennis with an hgb of 9.4! You are one tough cookie!

Once you get UND as long as it is at least by week 24, you should pay attention to the relapse rates instead of the SVR rates. There is little risk of breakthrough once you get UND, so the risk really is relapse after treatment is stopped.

Best wishes,
Za

[Trinity4]

Just wanted to add that since you are taking your 14th shot this Sunday, perhaps your doctor would be willing to do PCR testing every week to two so that you know exactly when you become UND.  I did not have any additional PCR testing after 12 wks, so when I discussed extending treatment with new hep doctor that will handling my treatment extention I was told that he recommends a minimum of 36 wks addtional treatment after UND.  Some doctors add the the weeks it took to reach UND to the 48 wks.  Example, if you clear at 14 wks, your treatment duration would be a total of 62 wks.  Had we known exactly what week I went UND it could have shortened my treatment course.  I think I probably cleared somewhere around wk 15 but since I only have the 24 week PCR to base my UND status on, I will have to go the full 72 wks.  Treatment protocols vary from doctor to doctor.  I would rather err on the side of caution in my case since I don't know the week I obtained UND.
You may want to talk to your doctor about starting you on epogen (Procrit) for the anemia.  I certainly will make you feel better.
Good Luck
Trinity

[zazza]

I don't agree with Trinity here. I think as a slow responder you should do the full 72, and not try to find some treatment extension plan which is not backed up by studies.

I became UND myself somewhere between week 13 and week 15, and sure enough, it was tempting to do 52, 56, or maybe 60 weeks. This was also suggested to me by one of my doctors. But in the end, I decided to do the full 72, just to be sure I had done everything I could to win the battle against HCV. I am SVR now, and it certainly was worth those 72 weeks on tx.

It is interesting however which week you become UND, as the odds of getting SVR are greater the sooner you become UND.

[skersj]

Although this tx is no picnic, if my blood work stays stable, I am more willing to go 72 weeks in hopes of NOT RELAPSING than to cut it short and start all over again and never know "what if?"  My doctor wants to test every 4 weeks. Hopefully my body will hold out and that will be close enough.  I let them know at my 12 wk check, I am interested in going 48 wks past UND. He suggested at the time before we knew I still was detectable that we might go just a full year but said since we were not on a study, we have option of going 72. . (Hope my insurance feels the same!)  I am being seen at a Liver/Kidney Transplant Center and they tell me the marjority of their patients are HCV+.
Although I felt really bad wk 7 - 10, for some reason, I feel great now even though hgb is low. I pray every day, my that my body is strong enough. I can tell my strength is not what it was before treatment.

[skersj]

Have you taken the Procrit? Does it help with shortness of breath? Sometimes when first beginnning an activity, my heart feels like it is going to burst and I can't breathe, but once I get warmed up, it gets better unless I run alot. I played a very competitive match for 3 hours a couple of weeks ago and the last 30 minutes, I could tell I wouldn't be able to go very much longer no matter how hard I pushed myself. I was wondering how much it would help and how many shots before most people see a difference?

[zazza]

Testing every 4 weeks is fine. That is what I decided to do when I was detectable at week 12.

Tx sure is no picnic, but it is doable - one day at a time. I can't believe I am already 8 months post tx. Just do one day at a time and then suddenly you are all done and it is all behind you.

[skersj]

Are you SVR!!!!?

[Trinity4]

I have no experience with Procrit but many have said it certainly helped with the shortness of breath and fatigue caused by anemia.  I'm sure others will speak.  

[jdwithhcv]

Procrit helps with the shortness of breath, to a degree.  You may not see your hgb go back to where it was, but Procrit can raise it enough to let you tolerate treatment and you will adjust somewhat to the lower hgb levels.  It took about 4 weeks before I felt improvement, but as long as I took it I was able to maintain hgb of 10.1.  Without it I needed transfusions.  Best of luck to you.  I hope you go UND soon.

jd

[skersj]

Thanks, I am keeping the faith that I will be UND soon. If not, I will continue the battle! For some reason, I have alot of energy now, but good to know a helpful drug is there should I need it. It is comforting just knowing.

[zazza]

Yes, I am SVR and so are my two "companions in crime" who treated at the same time as I, Wyntre and Proactive. There is hope for us 72-weekers! But not to forget that not everybody gets SVR after extended tx. Nelson is a recent example of a relapser after 72 weeks.

The only way to find out if extended tx will give You an SVR is to try it. Roughly speaking, extension cuts the relapse rate in half, and that is good news for us slow responders.

[skersj]

Congratulations! I am so happy for all of you! I knew if I was not UND by 12 weeks, my chances of SVR were greatly reduced. I just am still just not sure exactly how much. I have heard any where from 6% to 40% chance of still clearing. Even if it is just 1% chance, I am willing to try 72 weeks if my body holds out. After reading Marcia's posts, I started taking Riba with teaspoon of organic coconut oil to help with the uptake and found other digestive benefits. When I asked my doctor how much fat I should eat with it, he said it didn't matter because 1000 mg was plenty for me. But now I wonder if I should have been eating more fat. Now from this forum, I am wondering if I have eaten too much sugar because I ate Halloween candy & ice cream with toppings.  My weight is fine but am I insulin resistant??  My doctor never mentioned it.  I need to stop obsessing!

[Bill1954]

Skersj,

Zazza was kind enough to start a thread that some of us have participated in; this gives a decent snapshot of extended treatment within this forum:

http://www.medhelp.org/posts/show/410633

On my first treatment, I didn’t achieve a 2 log drop at the 12 week juncture; at that point, I substantially increased ribavirin and extended treatment to 56 weeks. I eventually became RNA negative to <50 IU/mL in week 20 of Tx; however I relapsed shortly after completion of treatment. I have since re-treated, and am awaiting the 6 month post results.

Good luck to you with your treatment outcome—

Bill

[meki]

I can only say this:

I think EACH INDIVIDUAL is different.

I am a 3a

And I didn't respond until after week 16 on a 24 week TX - and maintained UND to now for SVR status......

So as far as the world goes - I've been told I'm unique and extremely lucky.

But --- If it can happen to me --- that means it can happen to others.

I'm not advocating changes to the SOC - but I do believe that if we were permitted to get cheaper tests --- People who finally go UND or responders at later points would be able to monitor WEEKLY their stats.

I think that if we could get cheaper tests and monitor weekly - we would be able to determine that folks do not have to stay on TX as long as others.

But that's just my opinion on it --- I say DO NOT GIVE UP HOPE.

If you haven't responded - follow your doctor's orders --- if you have a slow response - follow the SOC --- and HOPE!!!

BELIEVE.

Because soon there WILL be better medicines --- and there will be faster cure rates.

Much love and luck to you.

Meki

[Trinity4]

Would of -  should of - could of.  You're right, need to stop obsessing.  I eat sugar all the time, not insulin resistant and currently UND.  As long as you are eating and taking riba with food, you'll be fine. I'm quite sure the food nazis would argue that point but I haven't heard any testimony directly relating UND to food (as of yet) but quite sure one will surface soon though.  
Eat to live, that's the most important thing.  If you think you are IR, get tested.
Trinity  

[skersj]

Bill1954 - Thanks for the thread. It gives me hope and reminds me I am not alone in this fight.

Meki- Thanks for the encouraging words. You are right! Anything is possible even if the odds are not in our favor. You are truly blessed. And if only the tests were improved and less costly. I was one of the unlucky few that had a painful biopsy with intense right shoulder pain for 5 days. And I am still battling the insurance company to pay for all my tests.  

Trinity4 -  Thanks, I will try to stop obsessing about the food. I have no reason to believe I am IR (except that I didn't RVR), just heard about it on this forum and it caused me to wonder.  I am physically fit and my bx according to my doctor, was stage 1 Fibrosis. Since I am pretty sure I have had this since the 70's and moderately drank off and on for about the last 10 years, I am not sure I believe the bx is correct. Or maybe Hep C became active after I started drinking more?? Because I rarely drank alcohol when raising the kids but after they grew up it became a habit to have a few beers after work many days of the week.  OH NO! I just realized I am doing it again! Obsessing! I am stoppng now. Thanks for listening to me rant! It is just that I have been holding it all in for so long! I am quitting now! :)

[zazza]

Look at the relapse rates for slow responders. Reverse them (ie subtract them from 100%) and you have the SVR rates for slow responders who remained UND throughout treatment.

[Trinity4]

You're fortunate to have such little liver damage.  I figure I've had hepc for 38 years and biopsy showed stage 3 last October.  Never had any symptoms of hepc and yes I drank socially for years and became a weekend warrior for a year after a divorce 10 years ago so I'm quite sure that contributed to the progression of my liver damage even though I haven't consumed alcohol in over 3 years.  Hindsight right?  
Rant all you want -  we sure do.  Don't hold it in, that's more unhealthy for you than sugar!!  Somethings we can change, other things we can't.  During tx it's so hard to maintain good nutrition with the nausea, fatigue, aches etc. If a particular food makes you feel better, eat it.  Of course, too much of anything is bad but I'd rather deal with an elevated cholesterol level after completing tx. To date, my cholesterol is normal but until tx, I was very active and that certainly helped with my cardiovascular and blood levels. Since you are still so physically active, that is helping to maintain a healthy heart and good cholesterol level too.   It don't eat an abundance of sugar, but a I like my pastries and an occasional candy bar for energy.  
Glad you found this forum and hoping you become UND soon.  Please keep us posted of your progress.  If 72 wks is the course of action, I'll ride the waves right along with you and I fully expect to wipe out a number of times before it's all over!!
Trinity

[Facta_non_verba]

Thanks for that link. If you're up on the lingo you learn around here, I think it's the best summary of current treatment of Hep C and whether to extend treatment.

I think testing VL once a month is adequate. If you have a doctor who will extend treatment to 72 weeks if you're a partial early viral responder (pEVR) then the big question is whether you become UND by 24 weeks. Current info says that if you're not UND by 24 then quit. If you do become UND by week 24 as a pEVR then 72 weeks is probably the best. Weekly testing might be important in a clinical study to find out the true cutoff for considering 72 weeks treatment, but it's just more blood draws and expense unless you believe in the theoretical 36 weeks beyond UND thing.

Same for EOT testing. It doesn't matter if you have an ultrasensitive test or not because the test is just to know that you didn't have a breakthrough at EOT which might be helpful to know if you have to re-treat. It doesn't help with clinical decision making at that point.

I have gotten tested periodically since becoming UND only to know if I had a breakthrough which would make it useless to continue treatment. Why put myself through more of this if I'm wasting my time?

I have 13 more days of treatment to finish 72 weeks then it's recover my health and get tested at 6 months. I could probably get tested at 3 months and know whether I'm SVR or not, but since 6 months is the gold standard for SVR and because I won't be considering re-treating anytime soon, I'll just enjoy life until then.

Jeff
Facta non Verba

[zazza]

So good to hear that you are almost done treating! You have done 491 out of your 504 days then. What a marvelous feeling!

Wishing you SVR,
Za