Aa
A
A
A
Close
Hepatitis C Community
13.4k Members
Avatar universal

NY girl/Flguy, I'm here !

How is everyone doing?  Saw Dr Schiff and his team,  Man, what a Dr, have never seen anyone like him before.  He also did the new fiber scan on me instead of a biopsy.  On a scale of 1 to 40, mine was 11.1 which was great and all my #.s are still normal.  So the meds did do something even though I relapsed.

Beagle Bailey
28 Responses
96938 tn?1189799858
Good to see you. What did Schiff have to say about steps that you might take?  I assume that he is familiar with the challenges of treating with riba in the presence of Thal.  Give you any insight?  Hope the family is well. Great weather the last few days, huh? Rains are about to start for us.
179856 tn?1333547362
I just can't believe it!  YAY!

Dr. S is like going to Dr. J...doesn't it make you go WOW this is just AMAZING it's NOTHING like a regular doctor AT ALL!

An 11 is just superb, unbelievable.  You have plenty of time. That's so great to know. When I was reading about the Debio I just didn't see anything about riba (although Susan will be getting a trial that will give it to her (that's the reason she didn't work with the vertex...it killed those buggers like MAD but they didn't have her on any riba so...can you just imagine that, she could have been successful!!!!!!!).

we still love you my friend. I'm just so glad you posted.

What did doc S have to say?  Come on! Spill we're waiting!
(I have to go let merlino know you posted...she's ALWAYS asking about you too!)
Avatar universal
Dr Sciff said not to treat that there was something coming down the pike in 2 to 3 yrs and that I had plenty of time.  When he does the right trial for me, I'm on the list.  

He also gave me his E-Mail address if I want to talk or have any questions.

Your right, just like Dr J.

Flguy/  How did your second round go?  Debbie - Are you still SVR?  Beagle
96938 tn?1189799858
Second round was a success!  The 6 month post pcr was a couple of months ago.  Things have returned to normal after a few strange hcv-oriented years.  Still get to Hutch many weekends, was just there for the long holiday weekend.
Avatar universal
So  Glad to hear your SVR, that is great news.  Glad you get to Hutch, your in my back yard.  We live in Tradition now for a year, it's a great place.  A few weeks ago they had Gary Pucket and before that Lou Christi and the Beach boys.  There's always something going on here.

Glad to hear you are doing well.  I'm going to wait to retreat as Dr Schiff has said.  My AST and ALT are all normal as well as liver scan.  Sciff did say that they are now starting to pay more attention to the geno 2 and 3's because of the relapse #'s and that the newer treatments coming out that he is waiting for will target those groups.

Beagle
Avatar universal
Welcome back. I am glad you're doing well. Mike
Avatar universal
Mike
How are you doing?  It's been a long time, so I'm out of touch as to how you are and what's new.

Beagle

Avatar universal
I am doing well Beagle. There really isn't anything new that's noteworthy. And, that's a good thing. It was so nice to see your name and to hear that you're doing well and have found a doctor that you trust. Stay well, Mike
Avatar universal
I don't know you, but I have heard so many good things about you from NYG, hope you hang around!

Deb
Avatar universal
Hello Mr. Beagle,

Glad to hear you are doing well. Nice to see you post. NYGirl and I always wonder how you have been doing. A lot of new members since I first came here. Take care.  Merlino
179856 tn?1333547362
See BeagleBoy you have fans you don't even know yet!

DebC is just like us...she's an Infergen babe...a real tough azz chick who won't let this virus get her and keep her, no way!  ;)

Me...still SVR as far as I know.  Doc won't let me re-PCR until October and you know what.....I don't care.  I've already been off treatment for 16 months or so so I figure the odds are pretty good!

I'm glad Dr. S gave you such great hope.  Just like Dr. J he really seems in tune to the fact that us geno 1s aren't the only chicks in the henhouse!  J said the same thing "too many relapses" - which makes me always feel so bad when I see new 2s and 3s who think they have some "lucky" geno. As we know...not the truth. It's time for all the doctors to get it so that the trials include EVERYBODY!  I can't imagine how hard it is/was for you guys because me just watching what you went through with that "lucky" geno well that was enough for me.

Good things DO happen to those who wait.............so I know you are taken care of and I have to be patient but you will get there.

THEN we will have SOME party - Merlino and I will get to FL somehow so you guys LOOK OUT!  :)
142526 tn?1397090672
Hi   I'm going to see Schiff on July 3, will also get scanned and ask him to read my path slides as well.  So nice to see you here again and happy things went so well for ya at Schif's visit, way to go.  Been to any pool parties lately , I hear fisheress is having one soon and Tikki dog will be there to keep you company, lol, sorry just some of the old threads kept me so entertained while going through tx, that day will come again, **** the same waiting game as many of us here, of course waiting is also pending what Schiff has to say during my consult.

!a, stage 1-2
Avatar universal
Well look what the cats chased in, glad to see you haven't been hit by any cars. Bet your still squating on them fire hydrants though. See where MagTX brought up fisheress, bet that got your tail a wagging.

Glad to hear all is going well for ya Bob.

cando
142526 tn?1397090672
Hi there, nice to see you are around too, are you joining the "wait list", hope you're doing well.  Fisheress won't be joining me on the wait list, she's doing very well, she's SVR, over one year, YAY!!

Mag
Avatar universal
Hi,

Well, it would appear we haven't forgotten our wild, imagined pool parties.  LOL

Those pool parties got me through some tough days on TX, humor is always good food for the mind and soul.

Glad to see that many of my old friends here are SVR and for those like me that was not so lucky, our day will come.

MagTx- Let me know how you make out with Schiff.  I was so impressed with him and his team.

Beagle
108191 tn?1199599905
Hey, great to hear from you.  It's been a long time.  Glad to hear you going to Dr. Schiff.

There's that Can-do-Man, you still lurk around here don't you :)
142526 tn?1397090672
Will do, I'm hoping that Schiff gives me the same or close to same feedback as my Houston hep doc, stage 1-2 and not stage 3 as previously read by my treating hep doc whom I no longer am dealing with these days.  I'm bringingi my pathology slides from pre tx to Schiff and will get scanned on July 3.  Wonder what he'll have to say about re tx in my case, can't wait to be impressed by him and his team as well:)   .

Mag
Avatar universal
You will also find that Dr Schiff will give you his E-mail address and cell ph#.  Let me know how you make out.

Beagle Bailey
179856 tn?1333547362
Hey CANDO!!!!!  Nice to see you are in here with us too!  the pool is getting awfully crowded once again :)

Isn't it just amazing how important it is to have a REALLY good doctor when you do this treatment.  Just having an experience with a Schiff or a Dr. J changes EVERYTHING. They just let you see how very much they do care about you and your chances for SVR. you don't feel like a number anymore at all.

Magnum - God I hope you are a stage 1/2!  Any chance that you had a fibrosis reversal with all the treating and maybe you WERE a 3 but now ARE a 1/2?  That alone would make you feel extremely succesful!  i can't wait to hear what he has to say about your case!
96938 tn?1189799858
When I went to see the gang at UM I informed them that I might be interested in clinical trials that fit my hcv profile.  Although I went on to standard tx (designed by one of the UM docs - not Schiff) I had a couple of calls from the UM trial coordinator asking my interest. So, if you express interest, they will keep track of you.
Avatar universal
Great to see you post.  Glad all is going well for you.  Hope all is well with the family.  And, how is your new location, doesn't seem like a year ago when you moved. Did my 1 1/2 year post pcr last week, still waiting for results.  Earlier pcr's were UND, hoping this is UND too. My husband is still fighting Hodgkins and it does not look good.  His hodgkins is chemo resistant, so all they can do is slow the progression until his body cannot take it anymore.  Not an easy thing to watch but somehow I find the strength. Once my oldest graduates high school 2009 I will probably move to Louisiana, near my family.

How's the weather this year so far.  Hope there are few to none on hurricanes this year.

Have a GREAT DAY!!!
Cajun
179856 tn?1333547362
Oh Lady I am so sorry to hear that news from you.  i got so excited when I saw your post and that quickly was dampened by the news of your husband.  God you've just had such a damn tough road that that PCR is going to be negative just to make up for it all a little bit. It is.

I can't believe how much time has gone by...it has gone by so fast...does treatment do something to our sense of time or what?

ALL of my best thoughts and prayers are going out to you!

Debby
Avatar universal
How the heck are ya.  Hope all is well with you.  Have you seen POP and his Cadillac.  Sure do miss Don.  I am waiting for the results of my 1 1/2 yr pcr.  Others were UND, hoping the same for this round.  Don't get in and post much lately.  Lots on my plate and two teenage boys. YIKES  Will probably be moving back to Louisiana after my oldest graduates high school in 2009.  Need to get closer to my family.

Have a GREAT DAY
CAJUN
Avatar universal
good to see you, and with such a positive outlook! I'd be curious to know what stage the esteemed Dr. S though that FS 11.1 indicated as mine also came in in that range and am currently recovering from a lap bx I got in  an attempt to find cells that match that stiffness.

BTW, I definitely do not recommend the lap bx route - it's nothing like   an ordinary endo/colon-scopy. Instead of using the convenient, existing  openings and plumbing they have to make new holes and then kinda move stuff out of the way to get where they want to go; I'm not at all sure they put everything back where it belongs. It's now 3 days later and I still feel like I've been worked over pretty thoroughly..
Have an Answer?
Top Hepatitis Answerers
317787 tn?1473358451
DC
683231 tn?1467323017
Auburn, WA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Answer a few simple questions about your Hep C treatment journey.

Those who qualify may receive up to $100 for their time.
Explore More In Our Hep C Learning Center
image description
Learn about this treatable virus.
image description
Getting tested for this viral infection.
image description
3 key steps to getting on treatment.
image description
4 steps to getting on therapy.
image description
What you need to know about Hep C drugs.
image description
How the drugs might affect you.
image description
These tips may up your chances of a cure.
Popular Resources
For people with Obsessive-Compulsive Disorder (OCD), the COVID-19 pandemic can be particularly challenging.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Here’s how your baby’s growing in your body each week.
These common ADD/ADHD myths could already be hurting your child
This article will tell you more about strength training at home, giving you some options that require little to no equipment.
In You Can Prevent a Stroke, Dr. Joshua Yamamoto and Dr. Kristin Thomas help us understand what we can do to prevent a stroke.