Good Wishes

[friscosue13]

Due to a bad case of ignorance, I wasn't aware of the process and so did not start tx Friday as anticipated.  Hope this post is allowed -- just want to say sorry to "Sindog" for breaking our "date" to start together and hope his first shot was uneventful and he's enjoying the beautiful weather (east coast -- a truly glorious November!).  All the best to all.

[friscosue13]

I'll re-search for his post.  I'm scheduled for a sonogram monday a.m. and will see the dr. on friday.  I've seen mention here about all the waiting involved.   Guess this is my initiation!  I'm getting cold feet again, and just hope i didn't mess up my disability by having one dr. sign me back into work and then not returning and asking my hep dr. to keep me out.  (He extended the return date but we forgot to uncheck the "disabled yes" box. )   I'm having high anxiety and will have to try to just stay put until I do what I need to do.  Again, the whole problem is that I don't want to return to work, as much as I hate staying home, only to be outsourced, which is in the works, and have to look for a new job just as I'm starting treatment, not to mention a break in medical benefits.  Not a good situation for a recovering control freak!

So sorry to repeat, but the needle's stuck in my head (remember stereo records?), and I'm just venting.  Thanks.

[friscosue13]

I'll re-search for his post.  I'm scheduled for a sonogram monday a.m. and will see the dr. on friday.  I've seen mention here about all the waiting involved.   Guess this is my initiation!  I'm getting cold feet again, and just hope i didn't mess up my disability by having one dr. sign me back into work and then not returning and asking my hep dr. to keep me out.  (He extended the return date but we forgot to uncheck the "disabled yes" box. )   I'm having high anxiety and will have to try to just stay put until I do what I need to do.  Again, the whole problem is that I don't want to return to work, as much as I hate staying home, only to be outsourced, which is in the works, and have to look for a new job just as I'm starting treatment, not to mention a break in medical benefits.  Not a good situation for a recovering control freak!

So sorry to repeat, but the needle's stuck in my head (remember stereo records?), and I'm just venting.  Thanks.

[cuteus]

aww! when will you start? sindog posted that he started his trip.  you are still in the same graduating class, though!

[mikeymike2]

Apologies for butting in on this thread but I have just discovered a conference report re Vertex 950 as follows:

"In development by Vertex Pharmaceuticals, VX-950 is an orally administered, highly selective peptidomimetic inhibitor of the Hepatitis C virus (HCV) NS3

[NYgirl]

I too had to wait because there were more tests needed to be done that my doc forgot about and had to wait an extra week. It really irked me! (understatement) cause it took a lot to get built up and ready!

I kept wondering why people were like laughing though...now I understand a bit more. The 48 weeks....seems to go on forever and one week starting time is no difference.

Aside from starting with Sindog - don't sweat it.  You'll be on the same track. Just keep your positivity UP and don't chicken out.

Debby (PS Just did week 8/48...seems like MUCH longer already)

[friole]

The anxiety is a killer, isn't it.  I am so sorry you had to postpone.  Believe me, it is better once the shots actually start.  I am sure the disability issue will work out to.
friole

[cuteus]

check the thread by psychdoc! remember the combo geno I told you about? That is she.

[cuteus]

http://hivandhepatitis.org/

the latest news from the conference in San Francisco are already out. Please check it out.

[NYgirl]

Thanks so much!  Going to go read now!

How YOU doin?  ;-)

[Tyree2005]

I am a new member of this web sit and it has been so helpful. I am waiting also and it is killing me I had a sonogram also and got the results. It showed a fatty liver.   I am waiting to have my Liver biopsy. I see my MD on the 16th and the biopsy will be scheduled at that time.  At what point did you have to go on disability?   The other thing is me being overweight.  I have read that keeping your weight down is very important.  I am trying so hard to loose these 50 extra pounds I am carry around and being stressed out does not help.  I am one of those people who will eat when stressed instead of not eating.

[GoofyDad]

Just for a thumbnail - I think you're looking at dosing levels that are being scrapped. They tried 3 levels and two seemed not quite enough to finish the job. I don't think there was a bounce back in the optimally dosed group. More info on the 1 hr webcast available the the Vertex site.

[vegas777]

This is a response I just got from the Chair of the Canadian National Hepatitis C Steering Committee regarding this mornings Vertex and others news:


"I know all would love to be able to post that a cure is available tomorrow, but things take time. The Hepatitis C virus is a pretty smart cookie. I'm warmed to see so much research on this virus in many ways. Not only medications directed at killing or controlling the virus, but also quality of life issues. There is so much emphasis on the word treatment that only deals with stopping or controlling the virus. There are so many other issues affecting those impacted with this disease. It ravages many parts of the body, may enhance other autoimmune disorders etc. These also have a place in the "treatment" envelope, but are usually set aside for current interferon combo treatments. Many of the new drugs in development are picked up by readers who often fail to distinguish between a security and exchange release, which is usually enhanced as to seek funding for more research and thus a profit for investors. One has to be careful when reading these releases as they are directed at the security analysts and investors rather than disease group consumers. Hopefully the NS3 inhibitors will show some promise as we have had only interferon in a few different guises, combined with a nuke for the past 10 years or so. There are many working long and often fruitless hours, to seek a cure for this disease. One day soon I hope it will be on our doorstep."
  

[cuteus]

good post! I have a feeling that couldn't think of a nickname is reading the releases for the investors only, I might be wrong. let's wait and see if he comes in to clarify. I know he owns stock in their market. I think that the reality might be different than the promotional articles.
good one!

[couldn't think of a nickname]

I would differ with the author of that statement in this respect: Yes, news releases are for investors and analysts, but these companies are very well aware of the fact that those with HCV are reading them, and that includes SEC filings. SEC filings are not really an opportunity to ask for cash, per se, they are about telling investors about their current business AND THEIR RISKS. Not disclosing those risks subjects publicly traded companies to lawsuits, and Dewey Cheatam and Howe have offices set up around the world.
Yes, PR firms do try to spin things, but some things can't be spun. For example, 4.4 logs in 2 weeks (VRTX), 2.06 logs in 2 weeks (SGP), 1.4 logs in 2 weeks (VPHM). Looking at stock reactions to these numbers contained in releases, VRTX has tripled since April, SGP is going sideways, and VPHM fell on the news. We know what VRTX is doing, SGP has said little, and VPHM is advancing it to the next stage, based on what they consider to be data good enough to do so. I don't know that I agree, and maybe the market didn't either.
I think that many with this virus do much research, and are aware of things that the average investor is not. If that is the case, as it is with me, then press releases are more useful to me than an average investor who doesn't understand the significance of a 4.4 log drop in 2 weeks. Putting out a PR is a good way of making it easier for us to learn more, and do more research.

[jmjm530]

If my memory serves me (and it's not doing a very good job these days :) ) wasn't this the same person who projected 7-10 years for protease inhibitors to hit the ground running while most doctors here -- not investors -- are projecting half that time?

I think with new drugs that show great promise like Vertex, it's important not to overract either way. On one hand, there are no guarantees the drug will pan out. But on the other hand, not to factor in the current trials in today's treatment decisions also doesn't make sense. We'll all know more by the 2nd quarter of 2006 when SVR data starts rolling in.

-- Jim

[couldn't think of a nickname]

I have taken offense to some of your comments to me before, and I take great offense to this one. You have no idea how much research I have done, and how many I have talked to.
I have read abstracts. I have PAID MONEY to buy research reports that I guarantee no one in here has read, written by hepatologists. I have read all PR's and even SEC filings, I have listened to conference calls, where questions are quite detailed. I have asked them to company's myself, and talked to doctors. I have followed this area for 5 years, especially VRTX and VX-950.

When you like to throw cold water on my posts, I don't come back at you, realizing that you have not had any need to research as much as I have as you are clear. You doubt me, fine, but verify things for yourself. I don't need to come in here and defend myself.

Oh, yeah, I own the stock, and it based on research I have done, not press releases. I believe in full disclosure, not realizing it would open me up to criticism.

[couldn't think of a nickname]

I am done here.
I wish those who are suffering well, and that a cure may soon be at hand. I thank everyone for support that has been given to me as well.

[GoofyDad]

If you choose to leave the board, it will be a huge loss for many here. Your posts are always well researched, balanced, looked forward to and appreciated by nearly all, even if there is a chronic dissenter or two with alternate agendas. Having said that, should you choose to discontinue posting, that's obviously your priviledge.

There are some here who's behavior is unexplainable. When I realized that simple truth, it made some issues much easier for me to deal with. Maybe you'll find that helpful as well - or maybe it's just not worth it.

In any event, I hope we will continue to see you around here - today and in the future. If not, I want to thank you for the effort you have put in to educating and sharing with us. It has really been helpful and a pleasure to have made your acquaintance. Thanks!

[vegas777]

hey you goof you!

how the b'jeez are you?  haven't seen ya much lately...

*diipers*

[GoofyDad]

I guess you just haven't been looking under the right bridges!

[vegas777]

yeah I forgot that you like to "lay low"...I'll go check out the bottom feeders and see if your footsteps are there *smile*

*dip's going snooping*

[dammitjanet]

I have to chime in with others here in saying that I truly hope you will continue to post here.  Your information and viewpoint are valuable to many of us presently considering tx options.  We deserve to have every available option put on the table to investigate.  I have researched much of the information you have provided.  I am willing to read and listen, but much of it is over my head.  You have the ability to parse this technical jargon into information that is readable and understandable.  Once I get the gist of it, I can go back and read again with better understanding.  You have helped me to find hope in the future of HCV tx, and to begin to develop a plan that will fit ME.  (Of course, I am not relying solely on information you have provided, and am consulting with my doctors.)  I just want to say thank you.  I hope that you will not be discouraged by naysayers or the short sightedness of people unwilling to believe that better options are possible.  If you decide to leave here and to post elsewhere, please let us know where we can find you.           DJ

[cuteus]

THis forum used to have members post dissenting opinions and comments, and there used to be correction of misinformation without people feeling attacked.  This is not a uniform forum and hep c data is not "uniformly" agreed upon in the community. Having to walk on eggshells with every post makes for an unhealthy atmosphere.  

I do wish people did not feel like they are being attacked every time someone dissagrees with them.  Members that have amassed a wealth of knowledge through years of research are great assets to support forums.
All some folks did, was voiced their opinions that it is too soon to judge the new meds, if that can't be done anymore without it being considered an attack...

to whom it might concern:
there ARE some behaviors that are unexplainable or maybe easily explained as immature and distasteful. making snide comments at every turn definetely qualifies.

[mikesimon]

I will sound so much like an old jerk that I really hesitate to write it but I will anyway. I have been here for 3+ years and I really wish some of you could see what things were like way back. There was rampant profanity aimed at members by members whose only complaint was a disagreement about TX related stuff. It got heated and ugly and I certainly don't yearn for a return to those days. But we were thick skinned back then, maybe because there were few alternatives, and even back then this board was the best source of info and support. Like today, there were very smart people posting and helping the less informed get up to speed. I really hope that we can disagree, maybe vehemently, and rub each other the wrong way and yet still stay around and contribute. It's really important to so many that I think each of us has a duty to hang tough and continue to help out. After all this disease is a killer and we ought to be tough enough to handle a little animosity here and there. Mike