A Little Encouragement

[kconn14]

Just thougt I'd post that after 18 weeks of Tx I am SVR! I'm 65 with geno type 1b and started with a vl of over 10,000,000. Stage 3 bridging cirrhosis.
I think it's important that those of us who are successful share so everyone doesn't get totally overwhelmed with all the bad things that can happen, like I was when I first started looking. Yes, bad things can happen, but so can good things and being a glass 1/2 full kinda gal I wanted to add this post for some balance.
I hope you can find this helpful on your journey.

Karen

[Rockerforlife]

Sounds like the red spots may the the so called RIBA rash,i never did get the rash.

[kconn14]

I'll definitely continue for the entire 72 weeks if that's what it takes. I'm at week 22 now and still going forward. I'm definitely blessed to have found such good support out there in cyberland and I'm thankful for each of you.
I have noticed in the past week that I'm getting little red spots on my chest and abdomen and thighs and even on the back of my hand. Does anyone know whether this is a symptom of the meds or is it evidence of the disease (stage 3 with bridging cirrhosis)? I'd appreciate any feedback.

Thanks,
Karen

[Marcia2202]

I'm sorry you cleared so late and have to extend to 72 weeks. It seems that you have a knowledgeable doctor.

I wish you all the best with it! I believe I can say that everyone here is rooting for you!

Bon courage!!!

Marcia

[jusjames]

yes 72 in total , well done do the extra time dont be tempted to stop at 48

[mikesimon]

Good luck.
Mike

[Proactive]

"I have tried to show some of the study info to my doc but he's a resident and wants to stay with what he knows. He has extended treatment to 72 weeks - that is total isn't it? Not an additional 72?"
It sounds like your doc is right on top of matters..And yes, It is 72 weeks total. Best of luck in your journey,one week at a time.
Pro

[kconn14]

Thank all of you for your helpful information - I never take offense to knowledge. I have tried to show some of the study info to my doc but he's a resident and wants to stay with what he knows. He has extended treatment to 72 weeks - that is total isn't it? Not an additional 72?
UND at 18 weeks - I'm still jazzed!
Even tho I'm tired all the time, I'm very fortunate in that I'm still working full time and I also prepare income taxes so I'm really busy right now. It's taking a lot to stay on top of it this year but I'm almost to the 15th.
Life is good and it's good to know there are others out there with valuable information to share.

Karen

[Marcia2202]

Hi,

Again, I would like to congratulate you on still being clear after 18 weeks of tx.

I have been reading through this thread and can see that there is quite a lot of confusion. I would like to help clear it up, so please do not take any offense. I know that all the terminology and milestones of treatment can be confusing in the beginning, but we are all here to help.

I will take a quote of what you posted and explain it.

'I also read that there have been studies that show people who have cleared the virus by the 24th week have about a 99% chance of being SVR the rest of their lives.'

I believe that you have misunderstood this concept. The 24 weeks is meant for AFTER treatment. If you are still UND (undetected) 24 weeks post treatment (also called SVR) You are cured, meaning that you probably have even a bit more that 99% guarantee to be SVR for the rest of your life = cured It is very rare that people relapse after achieving SVR 24... Thats what they call it in studies


If you clear by 4 weeks of treatment (this is while one is on treatment), you have a 90% chance to achieve SVR once you finish treating. The later you clear, the more the % goes down.

Now I would like to ask you when did you become undetected the first time during treatment? It is very important for you to know this, as it determines how long you should treat.

Could you let us know when the doctor had you tested and what the results were?

Rooting for you,

Marcia

[mj6000]

Many people have to extend their treatment and since you went UND later than some it is something to consider and ask questions about.This forum is a wealth of knowledge and you are lucky to have found it. You will be pleasantly surprised that some people in here know more than many Doctors.So post questions and you'll see.

[nygirl7]

Whatever they called it, perhaps UND, there is no evidence of the virus at 18 weeks of Tx. I will continue the Tx for the prescribed amount of time just to be sure.

Oh no KConn Trinity is right.  I did not get to UND until about the same point of time as you and I had to do 72 weeks of treatment.  You see it's not just that we get to undetectible but that we train our immune system to kill any of the virus that just might not be showing up as "detectible".  This is why the rates for a geno1 are about 50%.  the other 50% doesn't truly get to UND but believe that they are and then when they do off the meds - BAM relapse.

The encouragement here is that you DID get to UND albeit a bit late to the party (like me so I understand too).  But now you seriously have to consider extension.  There are major major studies out there that show the closer you get to UND at week 4 the better your chances are. Then another says if you are not UND by 12 but before 24 extending is the best thing you can do to bring back up your chances.

I know that this sounds totally bummer but it's the truth.  Nothing matters more than knowing these things when you are on treatment so you can REALLLY get to SVR which means cured for good :)  Does it totally suck to have to extend?  Yup. Is it worth it? Yes I've been cured now for over three years and thank God for that every day.

Please see if you can google up the Berg Study and the Sanchez Tapias study excepts.  You can print them out (they are pretty easy to understand) and bring them to your doctor. Believe it or not some doctors know LESS about the new studies than the folks in here (but the folks in here care more because they've been in the same shoes that you are and know how it feels!)

Please.

Debby

[Trinity4]

Don't mean to be a buzz kill here but the sooner you clear the virus as in before or at 12 wks, the higher the odds of attaining SVR.  If you clear between 12 - 24 wks you are considered a slow responder (that would be me) and extending treatment to 72 wks is usually recommended.  A rapid virological responder (RVR) which is UND by 4 wks has the best chance of SVR.  Those who clear by 12 wks have around a 45% chance of SVR and those who clear by 24 wks and continue with treatment to 48 wks have around a 15% or less chance of SVR.  (not sure about that percentage, may be a little higher but I don't think so)

The earlier you become UND, the better the chance of achieving SVR.

I am keeping my fingers crossed for you.

Trinity

[Bill1954]

Wow, I only just now saw the good news; thanks for posting this, and good luck as you go along. This is good news for others considering treatment; these meds are more than smoke and mirrors, they really are effective :o)! My biggest complaint was fatigue as well; I never really became ill per se… could have slept for several years, though, had I let myself!

Good luck, and keep in touch—

Bill

[kconn14]

Whatever they called it, perhaps UND, there is no evidence of the virus at 18 weeks of Tx. I will continue the Tx for the prescribed amount of time just to be sure.
I really wanted to do this naturally, but because I was stage 3 bridging cirrhosis and 65, didn't feel I could affortd to wait and see.
I'm now glad I am doing the Tx because to get good news is so important when you've been diagnosed with the HepC. I'm also very lucky, I don't seem to have any severe side effects, mostly fatigue, but I work full time and have my own seasonal business that I run and manage to get everything done.
I also read that there have been studies that show people who have cleared the virus by the 24th week have about a 99% chance of being SVR the rest of their lives. More good news!
Thank you all for your responses and I'm only too happy to help in any way I can.

kconn14

[jdwithhcv]

Wonderful news!  I hope you continue to have great success with your treatment.  I was so pleased to read your post - its nice to hear good news.

Lately there has been a lot of discussion on this forum about reasons NOT to treat.  I think sometimes people lose sight of the fact that many of us have had great success on SOC and as a result we have a new lease on life.

Congratulations!

[Marcia2202]

I'm rooting for you. Congrats on still being undetected!!!

[Trinity4]

Time frame puts kconn14 at or around 18 wks of tx.  She was told by her hepatologist she was a rapid responder so let's hope 30 more weeks of tx left and big SVR after that.

I'm pulling for you!!

Trinity

[justme53]

I'm 'reading" UND at 18 weeks, not SVR or RVR. Is this correct? If so, are you thinking of extending tx? It's always good to get that UND especially those of us in the harder to treat category. Best wishes to you and an SVR in the future.

Pam

[tashka]

If you are RVR, this is a great predictor of successful treatment and SVR in the future. Best of luck to you.

[mj6000]

I read your previous posts and it looks like you started treatment about November 2009 so you couldn't be 6 months post treatment yet. Did you mean Undetectable? Are so you still treating? If you are UND congratulations!!! That's fantastic too!

[WriteItDown]

Congrats, that is TERRIFIC news! Goes to show age doesn't necessarily mean anything, and it's great that you didn't let anyone discourage you from treating.

Is it possible you mean RVR and not SVR?  Aren't you still treating?

[tashka]

You started treatment in October 2009. How can you be SVR? SVR is declared if you are UND 6 months post treatment.

Are you still on treatment?

[nygirl7]

I am so happy for you I wish everyone would have your courage and determination.  Another friend of mine died Saturday night from HCC (she had hep for many years but didn't want to "lose her hair") and believe me...............your encouraging words might someday be responsible for literally saving someones life.

Congratulations - nothing tastes quite as good as saying SVR does it?  :)

[Missy114]

Thank you for posting. I'm new to all of this, so I really did need some encouragement! I'm not sure what genotype I have yet, even though I am pretty sure I got all the bloodwork done. I'm going to a heptologist next week (I wasn't too fond of the gastroenterologist I saw) so I will keep an open mind!

-Melissa

[mj6000]

Was that your 6 month post treatment test when the Dr declared you to be SVR?