Questions for Doctor

[Michigan57]

I've had all the tests (blood, CT scan, liver biopsy) and go see my doctor next week for his suggestions on what treatment I need.  Can anyone recommend what questions I should ask him or anything else I should be doing?  I'm genotype 1a, Stage 2 Fibrosis, Viral Load of 1.65 billion (6.2 log) (and I still don't really under viral load!), platelets are 92,000, ALT 72, AST 86.  Besides feeling overwhelmed and terrified, I'm feeling good!

[Michigan57]

So if I wait for the new treatment you're saying it will be one more medicine along with the interferon and ribv?  That's kind of scary too.  I think I need to learn more.  The side effects I read and hear of just for the interferOn and ribv terrify me already.

And there are a few people I kind of wish I had waited to tell because they've already told their family and who knows just kind of keeps growing -- doesn't really make it easier in that sense.  Oh well not much I can do about it now but wish I'd read these posts and put more thought into it!

Have a good weekend!

[Kathy73]

Glad to hear you have a good support system. While everyone is waiting for the new drugs that will really help with the length of treatment and probability of SVR, they are in addition to rather than instead of current SOC. It is important to have people who are supportive around you when you do treat. At least it was for me.

[Michigan57]

I just recently told my husband,  a few of my closest friends, my sisters and my adult kids -- wanted my kids to get tested in case I somehow had passed it on to them but all are okay.  It took me a few months before I said anything but then I decided that if someone had a problem with it, it was their problem.  Those that know me are ready and willing to help and be my support system.  Can't say I'm broadcasting it or anything like that but I guess we'll see what happens.  I do know what you mean though ... initially a few people seemed like they were afraid to hug me but all's better with them now.  Thanks for your input

[Kathy73]

I agree with Cindy2955. It was not necessary or desirable to tell co-workers, bosses, acquaintenances, etc. In fact I didn't even tell my adult children. I told my other doctor, my dentist, two good lifelong friends and my husband. This gave me the support system I needed to treat without having to deal with possible negative feedback from uneducated or inconsiderate and cruel individuals. It was not necessary to tell my workplace. I treated for 48 weeks and only missed one day of work. Of course its up to you, but this is what I did.
Kathy

[EyesofBlue55]

Go to the right side of the page and find common Hepatitis c acronyms.It will help you to understand what all the abbreviationa are.SOC is Standard of Care.Which is the Treatment now for hepc.
  Be careful of who you tell.They is alot of stigma attatched to this disease.They could look at you as a possible iv drug user-thats what most people think.They are uneducated about the disease and unless you dont want the possible reprocussion-dont tell.My best friend doesnt know-only my family.....cindy
You can always tell after your cured.thats my plan
Keep reading and researching

[Michigan57]

I added the new drugs to my list of questions for my doctor -- thanks for the added info too.  Some days it's just totally overwhelming!

[Michigan57]

Thanks for this link again -- I need to print it out or order some copies. I think I'd like to pass it out to family and friends so they understand more about it all too.

[Michigan57]

I feel lots better just having other people to talk to about all of this!  Thank you for your support and information.  Is the allele test the same as  IL28 B ?

A journey ... I like that ... maybe I can start thinking of this as a journey.  Definitely makes it sound more positive.

Thanks again.

[Michigan57]

I'm adding your comment to my list of questions for the doctor -- thank you!  (what is SOC?) ... I think I need to print out the list of abbreviations until I get familiar with them!

Thanks for your response.

[Michigan57]

Since my ALT/AST numbers were elevated it prompted my primary care doctor to do more tests and that's how the Hep C was diagnosed so I placed a high value on those tests and numbers.  Glad to hear that they don't affect treatment.  I had good ALT/AST numbers in 2005 so something between then and now this disease decided to rear it's ugly head.  I had a blood transfusion about 25 years ago and doctor suspects that is how I got, though I do know how you get it is irrelevant -- it's there now no matter how.

Thank you for giving me more information and responding.  It's good having support ... I'm trying to breathe and relax and hopefully will just know more what to expect after my doctor appointment ... but think I'll probably have lots more questions about treatment then!

Thanks again.

[Cory255]

Welcome to the Forum.
Ask your Dr. if he knows anything about the new TX drugs.  
Telaprevir or Boceprevir (in addition to PegInterferon/Ribavirin)
Guidelines for Geno 1's w/ less severe liver damage, wait for the new drugs.
viral load gauges TX response to see if you respond to TX drugs , as Cindy mentioned.

[Michigan57]

Thank you for the information ... I will get copies of all tests when I see my doctor next week.  I probably heard wrong on the phone and the viral load is million and not billion!  I want to go in to my doctor with a list of questions and I seem to have a zillion of them running through my head and am trying to figure out the things that I actually need to know and what's most important.  

Thanks again for the encouragement!

[EyesofBlue55]

Viral Load is the amount of virus in your blood.Like willbb said it has no bearing on liver damage.It is used to measure how well the drugs are working for you.Viral load can jump around up and down.But when you treat it should continually drop.
Always get copies of your bloodwork and tests.Someone here can help you to interpret them.
I was diagnosed in March of 2010-also overwhelmed and scared.The people on here will help you to overcome this.Get on the hep sites and start reading and get educated about the disease.Then come here and ask your questions-you will get answers!!!!

PS most people do feel good at first and dont even know they have HCV.It needs to be mandatory everyone get tested .

Welcome to the forum !!!!

[Mary4now]

See, dont you feel better?  I understand your terror, but your liver damage is still mild, but shows that it has started and you are starting this journey at a time where there are some choices and better treatments available.  The new drugs are showing better results and possibly shorter treatment time (which from what I gather is a big thing)  
Getting the allele test would also give you more information on treatment, it is a predictor of how well you will do with the SOC ( Riba/interferon) and that is a great thing to know.
(its early) Please dont worry willbb gave you the information straight on and you are going to be OK, its just a new journey you're entering and everyone here is here to support you,
Best of luck,
Mary4now

[willbb]

I believe that your viral load..is  probably 1.65 mill not bill.  and that is a  fairly average number. Nothing to worry about there as the vl fluctuates and really has no bearing on the amount of liver damage.

Being stage 2  means there is still fairly mild fibrosis,and what you might want to discuss with the doctor is the fact that new medication should be avail.sometime this yr.with better chances of success and shorter treatment.time.. would it be better to wait for their release

Don"t worry at all about your  alt/ast numbers..they are really irrelevant at this point and and  also has no bearing on treatment.

Try to stay calm...for the most part this is an extremely slow moving disease and you have lots of time to discuss a treatment plan with your doc.

Good luck

WILL

[pcds]

Before you decide on using todays tx, you should have the new test IL28 B that is a predictor of success with SOC.  No one should start SOC w/o that test.  There are new drugs likely to be approved in late May that will be better then current tx.  Discuss these things with you doctor.  Don't be scared, there is help to beat this virus.
Judy

[EyesofBlue55]

1.65 billion?

[James10500]

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/Newly%20Diagnosed_10.pdf

This might help.

Good luck