hep talk

I just joined the group yesterday. Trying to understand the talk. All the abbreviations and numbers are confusing to me!  I found out..... in the Dr's words " I have advanced liver disease, stage 3, geotype 3, alt 80, ast 60 he also said i have had low platlets since 2006 advises treatment to start in 3 months, and the disease can slow down and even improve with time. I need help understanding all the jargon.

[desrt]

http://www.medhelp.org/health_pages/Hepatitis/Common-Hepatitis-C-Acronyms/show/3?cid=65

[mj6000]

Genotype 3 is usually one of the easier types to cure so you have that going for you. Treatment is usually 24 weeks instead of 48 weeks too...but sometimes treatment has to be extended depending on how you respond to the treatment.The disease can actually be cured,as well as slowed down.  Keep asking questions here,you can learn a lot.

[wendyanne51]

thanks for the response. Yes the  doctor said my treatment will probably be 24 weeks,he also said I have to be mentally prepared so I go to see a shrink on Tuesday. I guess I need to smile alot to get treatment.  It is scary because Iam hearing about all the side effects, I need to keep working so I can keep my medical. So many things are going through my head right now.

[mj6000]

Here is another web site you may like.  http://janis7hepc.com/  It has lots of good information.

[stg088]

I know how scary it is to contemplate starting treatment.  Once I made the decision to treat, it seemed the more I read the worse it all seemed.  
I've read the following - not totally sure of it's accuracy.  Approx 10% of people cannot tolerate treatment and have to stop.  About 10% of people on treatment have very minimal side effects.  The other 80% run the gamut between pretty bad side effects to not so bad side effects.  
Most people seem to be able to continue working.  I have, although my job is fairly sedentary - If my job was more physically taxing, I'm not sure I would be able to continue.  If you know that you have to keep working to keep your medical benefits, you'll be plenty motivated to make it to work even if you don't always feel like it. Plan to do what's absolutely necessary in your life, and if you feel pretty good and can do more, then that's great.  If you are unable to continue working (possible, but unlikely) then you'll just have to cross that bridge when you come to it.
Good luck!

[nygirl7]

I worked for all 72 weeks of treatment - somedays it was hell some days it was almost ok...at least getting up and dressed and out of the house kept my mind occupied instead of laying in bed feeling bad for myself.

Many docs advise an antidepressent before you start, mine did and I think it helped me alot.

There are lots of different sides and some have cures but mostly the worst thing we all have in common is the extreme lethargy.

You have to remember that there IS a cure and there IS an end date to treatment.  AT stage 3 it's time to do something to stop it (i was stage 3 too when diagnosed) before you get to cirrhosis.  Just keep in mind why you are doing it and that it will end.........it helps.

And when you get a bad day come in and talk to some folks in here.  Everyone understands.  Plus remember the people who dn't have any problems during treatment aren't really in here online posting - cause they are doing alright.  Also make sure your doc will prescribe procrit or neupogen if you should need it - hopefully with your treatment so short you won't anyway.

Good luck.

[wendyanne51]

procrit, neupogen ??????????  what are they for.... iam already on paxil and serquil

[Bill1954]

Both Procrit and Neupogen can be used during interferon/ribavirin treatment if the need arises; they are prescribed to increase red and white blood cell counts if the HCV drugs lower them. Procrit is the brand name of the generic drug epoetin alpha; it’s known in Canada as Eprex, I believe.

These aren’t anything you need take yet; only if needed during antiviral therapy.

Bill

[wendyanne51]

svr??

[Bill1954]

Mmm… SVR = Sustained Viral Response = cure.

Basically, if you complete your assigned treatment with an undetectable viral load; then go six months without the interferon/ribavirin combo and continue to remain undetectable for virus, you are then considered SVR. At this point, the virus will not return, unless re-exposure occurs, and you develop a new infection.

We use a veritable alphabet soup of abbreviations and acronyms in here; I’ll link you to a page that explains most of these:

http://www.medhelp.org/health_pages/Hepatitis/Common-Hepatitis-C-Acronyms/show/3?cid=64

This is also available on this page in the right-hand column listed in the box ‘most viewed health pages’.

Bill

[IAmTheWalrus]

Welcome to this site! There is a lot of jargon and abreviations. See Dsrt's andBill's links. Another good source of information is:

http://www.hcvadvocate.org/hepatitis/hepatitis_C.asp

Handy pocket referenc on HCV facts:

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/pocket%20guide%20WEB.pdf

On the brighter side, you have genotype 3 which is usually easier to treat and success rate is much better than the more common genotype 1.

Best wishes to you!

[IAmTheWalrus]

Oh yeah, the psych evaluation is pretty standard pre-treatment. Interferon has been known to cause depression and worsen existing cases of depression. I think they want to evaluate you to determine the risk of that since it is one of the main reasons that cause people to quit treatment prematurely. Most of the time treatment with an antidepressant drug is successful. It was in my case.

[Trish77]

Hello fellow Canuck - first thing to do IS to read the link desrt and Bill sent you so that you catch on to the jargon - we'll help but that way you can help yourself too.  A bit of a start - tx is treatment and SVR is what you're hoping for - Sustained Virological Response - this is when you test UND - undetectable - for the virus six months after EOT - End Of Treatment.   Everything has acronyms .. I'm in IT and we have tons and my girlfriend in the military is stupid with them.  You'll catch on with a little bit of effort.

"Yes the  doctor said my treatment will probably be 24 weeks,he also said I have to be mentally prepared so I go to see a shrink on Tuesday. I guess I need to smile alot to get treatment.  "

This statement of yours gives me alot of hope for you - you have a doctor who is hooking you up with mental supports before you even start treatment AND you have a sense of humour about it even after being given some pretty sobering news.  

I worked through treatment also - doable.  I just made sure that everything else was extra and work got my main energy.  I used weekends (and evenings as needed) for resting up and made no weekend committments on much.  

This is a good source for information and support and you've landed well.  Welcome to the forum.

Trish