Kudos to Resident Forum Experts!

Hi all,

Just wanted to extend kudos to everyone to teaching me everything I ever needed to know about HCV!

I saw my Dr. today (finally) regarding UND at week 17 and I brought him copies of the Berg study and the Drusano study (courtesy of Zazaa - thanks lady.)

I also discussed extending TX for 72 weeks as I'm Genotype 1A, NOT UND at week 12 but UND before week 24.  I cited sections of the Berg study supporting this approach and mentioned those on forum (NYGirl, etc.) who have gotten good results with this SOC.

Thanks to Jim's info, I asked for Labcorp HCV NGI Quantasure <2 test for the next PCR and he agreed.

He said I'd taught him a few things he hadn't known and that when I'm finished TX I may have a job there as a research assistant!  *LOL*

I said I'd learned everything at medhelp.

All in all, it was a good (although brief) appointment.  He was VERY interested in and receptive to everything I presented to him.

If I wasn't facing the prospect of another 48 weeks of SX, I'd be ecstatic.

Thanks!

Wyntre

[zazza]

Wyntre!
I am so happy for you, you did so good at your doctor's appointment. I am so impressed! Research assistent - lol! It is much to be grateful for when your doctor listens to you and what you have learnt about this disease. I am also lucky enough to have a doctor like that.

So UND was at week 17. Your progress was good after week 12, surprisingly good. As a slow responder, I believe the faster you become UND after week 12 the better SVR rate you have.

By the way I have just learnt that it takes between 300 and 500 days for liver cells to regenerate themselves, and guess what 72 weeks equals 504 days. So maybe that is what us slow responders are waiting for: for all the infected liver cells to die and become renewed without the HCV virus. Makes sense to me to treat for 72 weeks then! I am on week 28 now, what week are you on?

[wyntre9]

You've got mail!

Thanks again, Zazzaaa.  I finally read through the entire Berg study and I was so encouraged by some of the findings, including;

"A particular benefit from extended treatment duration was seen in patients with low-level viremia (<6000 iu/ml) at week 12."

I checked my labs and I was around 3,500 at that point.

Also:

"relapse rates were reduced in . . .patients who were HCA-RNA negative (by) at week 24 (64% vs. 40%)"

And one more;

"Sanchez-Tapias. . . .showed SVR was (significantly) higher in the 72 week group as compasred with the 48 week group. . . .and the 72-week treated patients expressed lower relapse rates . . ."

Well, i'm not gonna quote the entire paper . . . but I am encouraged and my Dr. is impressed!

I looked back over my labs and at week 16 I was VL 90; the next test was UN<10) - I wonder how statistically significant 90 is?  I also wonder what the percentage of patients with really bad sx is?

I'm at shot 22 (tomorrow) and the SX are kicking my butt so I needed some encouragement!


"Your progress was good after week 12, surprisingly good. As a slow responder, I believe the faster you become UND after week 12 the better SVR rate you have."

Yes, I dropped  almost 4 logs from week 12 to 18.  (A month and a half).  In the previous 3 months I'd dropped only 2.4.  Wonder why?

"By the way I have just learnt that it takes between 300 and 500 days for liver cells to regenerate themselves, and guess what 72 weeks equals 504 days."

Aha!  Another piece of the puzzle!  :)

I am on week 28 now, what week are you on?

22 tomorrow.

Wyntre

[willows]

I'm always so happy to hear someone who is prepared when they go to the doc and the doc is glad for the info.  Sometimes, they can be so difficult, but you are well on your way.  Good luck and congrats on becoming a resident forum expert!!!

Willow/Jackie

[GrandmaA]

That is wonderful that you were so well informed when you went to your doctor and he was receptive to it also. And that you got all the information right here from posters. That is tremendous. I'm very happy for you. You did your research and benefited from it. Best wishes to you. Take good care.  

[orphanedhawk]

I am so glad to hear you feeling uplifted; receiving and sharing good news.
     I remember you saying you loved your doc, when I was looking to change doctors.  Doctors who can say, 'we don't know' and are open to new ideas are the best. You did your homework and it paid off.  Go girl go.     OH
  

[wyntre9]

Thanks everyone for the good wishes.

The receptionist told me last week that I was UND (after I pleaded with her to look) but I didn't have the actual lab report in my hand until today.  The past week I've been thinking, maybe she was in a hurry, maybe she read some else's report, maybe she's reading from the wrong date - you know how riba makes the brain spin.

SX are grueling for me so I really need a GOOD reason to stay on TX and now I have it.  And I also want to do everything in my power to never do TX again so
I have to try to become informed!

Anyway, my Dr. gave me a hug and I am optiomistic about extension, especially after thoroughly reading the reports Zazza and many others have posted links to.

Grandma,

I didn't even know what hepatits WAS until I got diagnosed (December 2006).  All I knew was it could make you turn yellow!

Hawke,

Yeah, this was a much-needed boost.  You must be almost at 24 weeks now, right?

How are you feeling?

Wyntre







!

[BThompson4]

I think you are making the right decision to go 72, given your genotype and slow response.

You look at this board and there are many geno 1 svr posters here that only got svr after more than one try at tx.  Doing the full 72 with the knowledge of so many people treating multiple times at atleast 48 weeks seems less harmful than doing at least 48 weeks more than once.  

Even if you do 72 and don't get to svr, you will learn a lot about how your hep c responds to SOC type drugs, something that could help you make further treatment decisions, including whether to wait for better drugs.

I cleared between weeks 20 and 22 and am in week 47 with my hepatologist having approved a 72 week treatment.  It's a horrible process, but I could not imagine going through it more than once, and the 72 really decreases the odds of that happening.

[wyntre9]

Hey!

I'm gonna read that link tomorrow!

Thanks for the info.

Wyntre

[BThompson4]

Zazza said:  "By the way I have just learnt that it takes between 300 and 500 days for liver cells to regenerate themselves, and guess what 72 weeks equals 504 days. So maybe that is what us slow responders are waiting for: for all the infected liver cells to die and become renewed without the HCV virus.."


Berg has apparently expressed the same type of idea about cells regenerating.

This abstract summarized Berg's idea that liver cells infected with geno 1 may have a longer life cycle than liver cells not infected with geno 1, and that extending treatment gives those cells a better chance to die and regenerate during treatment.

"The reasons for the relatively high virological relapse rates after antiviral combination therapy in patients with HCV genotype 1 are unknown. Slower turnover of hepatocytes infected with HCV type 1 could be a reason. A prolongation of the duration of the therapy could represent a strategy for reducing relapse rates in this difficult-to-treat patient group."

http://www.natap.org/2004/AASLD/aasld_25.htm

[mkeela]

You are so fortunate to have a Dr. "receptive" to your "advice" LOL. When I presented the information verbally to my infectious disease physician he seemed angry sort of and "scoffed" at me. He told me he would have to see the info on paper and that he'd never heard of my info. (sensitive PCR's etc.) He was so packed full of pride and SOOOO "backwoods" that I didn't even present the info. I only had one more visit with him anyway. Thank heavens my GP is receptive, but after the way my IDP acted I just haven't brought it up. I feel that if I'm gonna relapse my numbers will automatically soar above 615. So anyhow, I just wanted to tell you I'm so very happy to hear what a wonderful Dr. you have. Good luck with the research job!     ;)


                                                                    -Mequila

[wyntre9]

Thanks, Mkeela.

Bthompson,

good article.

Wyntre

[nygirl7]

Doesn't it make you laugh - its SO confusing at first and you just can't fathom how these people are so SMART and then after a while you go to the doctors and HE looks at YOU and can't figure out how YOU are so smart!  :)

My doctor did the same thing as yours.

Now he is current on reading all the updated studies, he reads the journals AND he has spoken to Dr. Jacobson (of whom he is a BIG fan) and gotten on some mailing lists for the docs to stay up to date on new and upcoming treatments.

You see I really believe that OUR initiative can be invaluable to OTHER heppers many of whom aren't even at a doctors yet!

You done good kiddo and I am very proud of you.

THAT is how you go into the doctors, make sure you get tests you want AND make sure he's learning how important it is to be up to date on this disease.

Now you'll get the test you want AND you don't have to scream yell and pull your hair out like a psycho!  You'll be stress free (well.....) AND getting the best care you can.


GREAT GREAT GREAT JOB WELL DONE!

(PS 72 was worth it, I was pretty sure I was out of luck but it looks like whatever else my liver had great time to recover and I'm virtually guaranteed not to get liver cancer plus it IS the best chance for us at SVR - don't let it freak you out or make you afraid or depressed. It goes by SO FAST I still can't believe I did it and have been done almost 4 months)

Debby

[wyntre9]

Thanks, Deb.

I'm hoping for the same reults as you a year or so down the line.

Unfortunately, the sx is just getting worse for me.  I know you are a very energetic person and were able to work the entire 72 weeks but it's impossible for me to do much more than get up in the morning.  It's really rough now coz of the moving.  I hope things will get better after that (if i survive it).

But after reading Berg, Drusano, Tapias-Sanchez, hearing yours and others anecdotes, I also think the extended tx is worth a shot.  If I hadn't reached UND by now it would, obviously, be a different story.  But after having done almost 6 months I agree with bthompson when she said that at the very least us slow-responders get a chance to see how we respond to the meds in the event of retreatment, later, and that so many 1A genotypes relapse after 48 week TX that trying for one extended tx may be better than doing a couple of shorter bouts.

You sound really good and I hope you're gonna stick around to shout some encouragement to the 72-week club.

Wyntre