12 week VL results, Close but no cigar

[vik97]

I just received my 12 week VL.  It was 595 UI/ml.  The N/P says we may have to extend treatment by 4 weeks.  Now I'm not sure where I stand.  What are my odds of acheiving SVR?  I am taking Pegasys and Ribavrin 1200mg per day.
Baseline:  7,860,000
4 weeks:     104,603
8 weeks:        6,425
12 weeks:         595

[Upbeat]

Extend by 4 weeks?  Whats that all about?  People do extend for a total of 72 weeks with some sucess.  I would think it would depend on how your handling the treatment.  If its not a real problem then what the hay.  If its a nightmare then risk reward formula comes into play.  Good Luck

                                                                                                                   Ron

[vik97]

You're right, Ron.  It's 72 weeks.  The N/P sent me an e-mail saying it was 4 more weeks of tx, but I talked to him on the phone since posting this and he said 72 weeks.  I will test again at week 16.  Thanks for your comment.

Vik

[Deb_c430]

Don't give up! No fun, but the reward out weighs the pain of it all.
Best of luck!
Deb

[nygirl7]

There is no such thing as extending by four weeks.  I was in the same shoes as you. Two years ago I had a 2 log + drop at week 12 but my 4 week was 411 and my 12 week was 419. 24 was UND.

Taking both the Berg Study and the Sanchez Tapias study into consideration I went for a second opinon from Dr. Ira Jacobson in New York City.  He was the lead investigator on Berg and many of the other important studies.  I asked about just doing 60 weeks. He said there was absolutely no data that doing any 'extra' weeks would be of any benefit. If I wanted to extend the data suggested that extending to 72 weeks would give me about a 1/3 chance better odds. That number is HUGE.  

So I did it.  It wasn't always fun or easy. I came to work looking like hell most days. Lost a third of my hair and suffered a thyroid problem at week 30 (which had nothing to do with the extension). I looked like an ugly grey bald vampire.

But - one year later I have my FINAL test in a week and I am SVR.

It was worth it 1000%.  I don't regret it for a moment.

----
Only you can really decide though what YOU want to do. Factors such as whatever your grade and stage are, what your work situation is, family support - all come into play. My insurance company would NOT pay for the extra meds (they said it was experiemental - yeah my butt - but that they WOULD pay for a transplant later if I needed it, nice huh?) so I did have to contact Committment to Care to pay for the rest of my meds. It was EASY. They are WONDERFUL and sent them on a monthly basis straight to my house for FREE. (Just so you know this is VERY common but VERY easily gotten around, damn insurance companies!).

Take your time and think it out.  Personally, I found that once I got the sides under control (ie: taking the Epogen to get the hemo up etc.) that being on treatment wasn't as bad as STARTING treatment was. So I opted to continue while it was livable and do it only once with the best chances I could get. Be reminded that the first time you treat is the MOST crucial and BEST chance to beat the virus. It gets harder after that if you have to treat again.

Just something to keep in mind.

Deb T
Good luck on whatever you decide.

[vik97]

Thanks for the information.  Congratulations on achieving SVR.  You deserve a lot of credit for sticking with it.  
I have since spoken to my N/P and he confirmed that it was 72 weeks.  I am being treated at the same university hospital in Manhattan where Dr. Jacobson works.
You said that  extending  tx to 72 weeks gave you 1/3 better odds.  Better odds than what?  Since I didn't get UND at 12 weeks, my odds are already under 50%.

Vik

[nygirl7]

Ah you are in the right place.  Dr. J is the MAN!  If I could have afforded to go to him I would have. But he didn't take insurance. As it was he is so wonderful he called my GI up in Westchester where I lived and offered to help him MANAGE me for free (my doc admitted that he had no clue what this 72 weeks was about (but remember this was two years back, the study had just come out).

This is the most unscientific thing you are ever going to read and I'm not sure it's EXACTLY right but bear with me...........I can't speak geek well and seldom remember to save anything verbatim anymore (my computer got so clogged with articles I couldn't even find them anymore anyway LOL).
If we start off with 50/50 odds - but we don't hit our number at week 12 say we go pretty far down the loop as per us gainning SVR.  Everybody knows that. But if we do the 72 weeks it takes us way back up giving us only a THIRD of a chance to RELAPSE.  So I don't know exactly how you'd figure out what less than half of 50 but then a third of that.......is but I do know that the third is MUCH better odds. That's a third chance that we'll fail........

Something like that.  I'm sure somebody will come in and explain it in real worldl superwisdom talk....I'm just not the one capable of doing it.

However I can tell it works.  I just might have the theory skewed in logic...cause I'm honestly not that intellectual (but I was the person who figured out originally from the tests studies that this was our best chance and it DID make sense according to Dr. J so.......i'm not as stupid as a box of rox). ;)

[vik97]

Thanks for explaining it to me.  I think I understand now.  I do have that brain fog thing going on.  

I don´t think that Dr. J takes my insurance either.  My doctor is one of his colleagues who does take my insurance.  

I have been feeling a little down about the tx expanding to 72 weeks but you helped me feel better.

[sfbaygirl]

I know that friojle tried doing less than the 72 weeks and relapsed. I could only make it to 47 weeks (didn't clear at week 12) planned on 72, but had to stop tx and relapsed. Do the 72, you sure don't want to go through the tx again for longer and less of a chance of SVR.  Good luck!