Im a New Patient of HCV..ANY help needed!!

[countrygirlcansurvive]

I have learned alot on this Forum today about what I have to look forward too.
My Status:Chronic HepC. 5/6 Fibrosis and Early Stage Cirrhosis
I just started my Tx yesterday thru Clinical Trial

[countrygirlcansurvive]

Hope it gets near you soon.My Tx in Florida at UF in Gainsville..Good Luck to You!

[Advocate1955]

Ooops, never mind.  I re-read the entire thread again, and I see that you've already begun the trial with GS 7977.  You are so lucky to be able to participate.  My husband has Cirrhosis too.  He has previously treated and failed three times.  I was hoping we would find an open trial with GS 7977 that would accept a Cirrhotic, but I haven't seen one in any of the states around us, including our state.  So, best wishes with the trial.  I hope it goes well for you!
Advocate1955

[Advocate1955]

If you can get into a trial with GS 7977, and if it meets all of your criteria for being a favorable trial for you, I would strongly recommend that you consider it right away.  Talk with your doctor, of course, to make sure that he/she agrees that it would be beneficial for you.  There are many things to consider.  For example, is it an open or a closed trial, will everyone receive the treatment drug or is there a possibility that some will receive a placebo, would you receive medications to help manage any side effects, what are the risks, etc.  However, all in all, GS 7977 has had very positive results in terms of a high success rate and minimum side effects, and if you have an opportunity to participate, I think it would be wonderful to consider it.  Here is a link to my journal where I posted an article that specda, another forum member, posted awhile back with A LOT of information about clinical trials and things to consider:  http://www.medhelp.org/user_journals/show/332520/Clinical-Trials-and-Medical-Research-in-Hep-C
Advocate1955

[countrygirlcansurvive]

thank you so much...God Bless

[Idyllic]

Here is a somewhat lengthy thread with posts by members who are tkaing the same med you are (GS-7977)

http://www.medhelp.org/posts/Hepatitis-C/Clinical-trial-GS-7977-and-BMS-790052/show/1696575

[Idyllic]

Hey I looked forever for that table the other day. I really like the way you took the time to set it up. Thanks.

[countrygirlcansurvive]

Hi Jenn,
    Im not familar with your Diagnosis,but I dont have the knowledge that alot of others on here have.What I do know is we have alot of good people on here to help us.I look forward to keeping in touch with you on here.

Good Luck to You!

[jennnnz7]

Hi am new here as well and awaiting tx. Actually, been trying to decide to whether or not to wait and received a lot of responses here to help me prioritize. Your story is just another one that encourages me start now while I have  the insurance.

I am so happy to hear you found a way to get tx. Looking to hear more from you in future posts.
Take Care,
Jenn

[countrygirlcansurvive]

The study drug is GS-7977..I dont know much about it..

[Advocate1955]

Maybe I missed this in your post, but I'm wondering what the trial drug is that you're taking along with your Interferon and Ribavirin?
Best wishes.
Advocate1955

[countrygirlcansurvive]

Hi again OH..The weekly blood tests is just for the 1st 2weeks,then every 2wks for the 4th week,up to the 12th week.The Time Schedules are good for me since I have a case of CRS really bad,I have wrote things down for a few yrs now, so I wont forget them..
- I take the meds on time..I have set my own schedule and they are early so thats good you told me..Only thing is my tx meds are every 12hrs,so it makes it easy..thanks again..

About Hector,lmbo! You will find I have alot of Humorous Moments,thats what keeps me going! I try not to show my Irritable Side..I know that is one of the sx in us All..hehe

[countrygirlcansurvive]

Thanks Debbie! I look forward to hearing more from you also..Would like to know why you are not taking tx yet? I see alot of that to on here.
- Is it that this is not their 1st time or other Health issues or Financial reasons or All of the Above?
- I was Diagnosed in April with the Cirrhosis..Hep C was found in 2005,but I didn't have ins to go to Specialists,so I did nothing till this year.
- I had a friend tell me about  Charity Programs that paid my Doctors and Hospital Bills and Meds.I qualified for 100% coverage on all.
- I got to Liver Specialist after awhile and he recommended the Clinical Trial and its all free.

Good Luck with yours...

[orphanedhawk]

It sounds like they're doing weekly blood tests which is really good. Although we don't like getting stuck over and over, believe me its' better than a problem not getting caught because they weren't watching closely enough.

Time schedules are good, they help us keep on track. Be aware that if you have sleeping problems while on tx, it could be from taking the ribavirin too late in the day. This happened to me and I switched from taking it with breakfast and dinner to taking it with breakfast and lunch. Taking it with a substantial meal is important too, or it can cause nausea.

Don't worry about Hector. He doesn't have a bad side, just bad moods sometimes, like all of us :)

[debbiemac40]

Welcome Countrygirl..  You will find this site awesome and full of information and wonderful people.  I have only been on here a short time and have yet been able to start treatment but I know when I do I will have the support on here and I will be better informed.  Good luck to you and hope to hear more from you.

Debbie

[countrygirlcansurvive]

thanks for all the info OH..
  I am sure it is the Ishak it says the findings was 5th stage out of 6 of fibrosis which means alot of scaring they told me and I do have Cirrhosis.Believe me I ask every Question that I write down every time I go.
  Today is Day 3 of tx meds and so far its been ok.Small headache and drinking way to much Water than I am use to..Ofcourse they give you time sheets to keep up with taking the meds and they take way to much blood every time you go in.just my opinion dont want to scare anyone.thanks Hector any info is greatly appreciated and it seems like you are very knowlegable in this area.I have been reading alot on here and I know I dont want to get on your bad side either,lol. Thanks man

[HectorSF]

While Metavir is the most commonly score for hepatitis C induced liver disease sometimes other scoring systems will be used instead. Here is a conversation table between Ishak and Metavir. Most people on this forum receive their biopsy reports using the Metavir score.

Look on your biospy report to see which score they were using.

Ishak                              METAVIR Score
Fibrosis:  0-6                   Fibrosis: F 0-4
0                                                  F 0 - no scarring
1-2                                               F 1 - minimal scarring
3                                                  F 2 - few septa
4-5                                               F 3 - Bridging fibrosis, numerous septa  
6                                                  F 4 - Cirrhosis

Cheers!

Hector

[Nighthawk61]

Thanks to both of you, i've printed of the acronyms and now i've got a name for a biopsy too , very helpful
Liz

[orphanedhawk]

Welcome to the forum.
If you already have cirrhosis you might also want to check out the cirrhosis forum
:http://www.medhelp.org/forums/Cirrhosis-of-the-Liver/show/1390%C2%A0%C2%A0

Also it will help you understand some of the posts if you know the acronyms.
Here's a link:
http://www.medhelp.org/health_pages/Hepatitis/Hepatitis-C-Acronyms-Abbreviations/show/3?cid=64

Good luck~

[countrygirlcansurvive]

If you are getting your 1st liver biopsy and its the transjugular biopsy,it was a breeze ,nothing to be worried about.Good Luck and God Bless You two.

[Nighthawk61]

I love your handle too, my husband and I are awaiting our biopsy, and will be following your thread. Feel Well. Thanks for posting. God Bless you too!!!
Liz & Gerry

[countrygirlcansurvive]

Thank you Bella!

[countrygirlcansurvive]

I have Chronic Hep C...Genotype 1a...Stage 5 of 6 Fibrosis...Early Stage Cirrhosis... if that helps to let you know. I would like to know all their is to know about it..I have the Brain Fog everyone has talked about that started about a year ago and tired alot...Thanks ahead for any info that you can give me..God Bless

[belle19]

it means sustained viral response.  if the virus were undetected (UND) 6 months after the end of treatment (EOT), you would be SVR.  good luck with your tx.  remember to drink LOTS of water.  it helps with sx.  best wishes.  belle

[countrygirlcansurvive]

yes this is my 1st time for treatment..My meds I am taking are RBV,Peginterferon and the study drug..the 5/6 is the stage of fibrosis or cirhosis..I apparently have had this Hep C since 1987 from BT.I have had the Transjuglar Biopsy which was not as bad as I thought it would be...Thanks for your response..Im a very positive person and HOPE to remain that way through tx.
Do you have this too?what is SVR?