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Newly diagnosed with Hep C - With lots of questions.
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Newly diagnosed with Hep C - With lots of questions.

I was diagnosed with Hep C in July 2010.  Needless to say it was a major shock to myself and my husband.  I now have accepted it and plan to do whatever I can to kill this virus.

July 2010 - I saw a Internal Medicine Doctor (actually I saw the nurse practioner) - they explained to me how to keep from spreading the virus to my family.  This was my first and foremost worry.  My mind was put at ease.  I had many, many blood tests done at that time.  I do know that I am genotype 1 - I have no idea about any other numbers.  If someone could help me out, I would appreciate it.  What numbers do I need to be aware of and why?


This past  week I had a liver biopsy - which again I was terrified.  I read and heard so many horrible stories that it scared me.  Thank goodness for a wonderful nurse!!!!  She explained everything to us in detail and stayed with me through the whole procedure.  I do not have results from that yet.  What questions do I need to ask?  And how long does it take until you get your results back?  At this point I was told about the new meds coming out  in 2011 and pending what my biospy shows depends on if we will treat or wait.  At what point do you have to start treatment??  I just feel as though my life is in limbo.  So sorry for all the questions and assistance that  anyone can help me with is greatly appreciated.    
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87972_tn?1322664839
Hi Bab; and welcome to the discussion group.

You’re doing pretty good so far. It will take a couple of days for pathology to read the results of the biopsy and return a report to your doctor. Once these are in, you’ll have a pretty good idea of any urgency for treatment.

When you meet with the doctor to go over biopsy details, ask about the ‘grade’ of inflammation, as well as the ‘stage’ of fibrosis; the fibrosis is actually the critical value.

Most likely pathology will use the Metavir scale; it stages liver disease numerically starting with F0 (no damage) through F4 (cirrhosis). You might also ask him if any steatosis is present, or if iron deposits were stained for and present.

It’s not always critical to undergo treatment, especially with genotype 1 and the assumed arrival of newer, more efficacious drugs nearing approval. In fact, if you have stage 3 or less scarring, it might behoove you to wait and see if the new drugs are released this year; your doctor can help you weigh these decisions.

Another test that might help decide how to treat is called the IL28B human genetic polymorphism test. This is relatively new test, and the results are suggestive as to how readily the patient will respond to interferon-based therapy:

http://people.chgv.lsrc.duke.edu/~dg48//L8464-0710-Service-Announcement-FINAL.pdf

Discuss this as well with the doctor and see if you’d benefit from this test.

Do you have decent medical insurance? HCV therapy is rather pricey, costing as much as $60,000 per patient year, and can readily exceed that.

Have they discussed your odds of success using the current drugs? Roughly 45% odds given the meds used today. The new drugs will be used as adjuncts to the current treatment; interferon/ribavirin will continue to be used, although with increased efficacy.

Avoid alcohol, and be careful sharing personal care items like razors, nail clippers, etc. that might transfer blood to others. These are just a few things to consider; others will likely add to the list. Take care,

--Bill

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Avatar_m_tn


Hi there....you have come to the right place to ask your questions,there are many people on this site who have already treated ,treating currently or are waiting to treat. It sounds like you have  moved past the initial shock of being diagnosed,and that certainly is a stressful time for us all.

It seems like you are taking the appropriate steps  moving forward  ,firstly by making yourself knowledgeable about transmission.As you have probably been told the transmission amongst family members is extremely rare,

You already know you are a Geno type1 and that is the most common type in North America and the success rate of that type with the current drugs available are approx 45 -50%. However new meds are currently being tested in many trials and are speculatively going to be avail sometime this year. The success rates of these meds are looking to have an efficacy closer to 70-75% .

Your biopsy is a very important test.it will determine the amount of damage to your liver and  will act as guide to you and your DR. on when is the best time to treat.

Most people currently with minimal or moderate damage are electing to wait for these new meds to become avail.

Hope that helps some...


WILL
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Sorry Bill..thought maybe you were having a nap  :)
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87972_tn?1322664839
Hahaha!

Zzzzz....

--Bill
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Avatar_f_tn
Thank you for the information.

I do have medical insurance a PPO Plan, but I have no idea how the meds would be covered or if they would be covered.  Also as part of my medical plan I have some RX coverage.  If it is covered I am still worried about the out of pocket costs.  Is there any type of assistance through the RX Companies?  If so how can I find out about that.  

Were you able to work when you were going through treatment.  I have a full time job and I love it!!  I am not a person to set around, although I have been having extreme fatigue for the past year or so.  As a matter of fact I just did take a little cat nap:)

How did you tell your family?  The only person in my family that knows is my husband.  I have an adult child and an adolescent child.  My family is in another area of the US, but I talk to them often.  Do I share this information with them, or do I wait until I know more.  Why worry them is my thinking.  Although it would be really nice to have someone to talk to.  I just do not know how they will react.    

What are your feelings on letting my co-workers or boss know?  I am thinking of not telling them, but I do not know how to explain the days off for Dr appts.  I do have to travel a few hours to the doc, so it is an all day adventure.  I work Mon-Fri so I will have to take time off to go to the docs.  I know legally I do not have to tell them.  My husbands feelings are they are your co-workers and not your REAL friends.  

Do you know of any books or other type of information that I could read.  I want to educate myself as much as I can.  
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87972_tn?1322664839
Hi there,

Yeah, the manufacturers of both HCV meds do provide patient assistance for uninsured; they used to cover underinsured as well; be sure to call them if you have trouble with costs. They don’t always state up front the scope of their coverage:

Pegassist (Genentech Pegasys system): 888-941-3331
Commitment to Care (Merck PEG-Intron system): 866-363-6379, opt 1

The meds alone are roughly $USD 2200/month for interferon/ribavirin; other drugs such as Procrit, Neupogen, etc can be considerably more expensive, if needed.

I didn’t work during treatment, but I’m guessing about two thirds do; it depends largely on your type of work, etc. Physical outdoor labor type occupations might be tough, especially during the summer months if it gets hot. Some do though; it really varies from patient to patient.

I’d be cautious about disclosing anything yet, to family, friends or work. As you get a little closer to dealing with all this, and a bit better informed, you might change your mind. There’s still considerable stigma attached to the disease, depending on your lifestyle and the folks that are around you. Like toothpaste, once out of the tube, it’s nest to impossible to put back.

Some folks tell their HR department they’re dealing with a blood disease or chemo, intentionally keeping things vague. I’ve heard some pretty sad stories over the years about people getting harassed at work, etc. Personally, I never felt stigmatized by anyone; and I told kids, ex wife, pretty much anyone that listened, hehehe :o).

Talk to the folks in here if you like; most of them understand what you’re going through; folks at work will likely be clueless, and sometimes less than empathetic.

I’m unaware of any comprehensive books on HCV; there are bits and pieces scattered around though. Here’s a link to a site that might be useful:

http://hepatitiscnewdrugs.blogspot.com/

Scroll down a bit, and you’ll see a long list of line items in the right hand margin that discusses topics like biopsy, viral load, genotypes, etc.

Another good resource page can be found on this forum page in the lower right margin in a box titled ‘most viewed health pages’:

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

You might want to print this for future reference; it’ll help with the abbreviations and acronyms used so freely in here.

Take care, and good luck,

--Bill
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Avatar_f_tn
Thanks again Bill!!!!  
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412873_tn?1329178055
Welcome to the forum.  Sounds like you’re following the path that you need to be on right now as far as getting the information you need to know to make an informed treatment decision.   I’m sorry you find yourself in this position, but we have all been where you are now so we understand.

You’ve been given some great advice above, but I would add just a bit.  You mentioned being a Geno 1, ask if you are a 1a or 1b.  Also, they would have gotten a viral load on you when they ran those labs, get that number as well.  Your viral load will fluctuate and is not an indication if damage, but it is still good information to have.  Especially once you start treatment, there are certain points when you will definitely want to check your viral load because it will let you know your response to treatment.  So those guidelines can wait, but I’d go ahead and find out your current VL.  I agree with Bill about getting the IL28B human genetic polymorphism test if possible and financially feasible.

Personally, I told no one except my husband when I was diagnosed.  My daughter was just graduating from high school and moving out to go to college and I didn’t want her to have to deal with my stuff until I had all the facts to tell her.

I agree with you, why worry them until you know what you are going to do.  Once I had all the information I needed to answer any questions for myself and had made my decision to treat, I did share with my immediate family and my husband’s cousin (only because I work for him).  Everyone else that noticed I was sick during treatment, I told them I was having an issue with anemia and if I had to expand to some nosey friends, I told them I was in a drug trial for my anemia.  I was actually in a drug trial and I was anemic, so my lie wasn’t too far off.   That strategy worked for me.  

I worked part time and went to school part time through my 48 weeks with relatively light sx, so it can be done.  I was on triple therapy-riba, interferon and Telaprevir-for 12 weeks ,and then an additional 36 weeks of just riba and interferon.  I have been free of the virus since my 3rd week on treatment (going on 3 years now, I believe-funny how it can get away from you when you’re  thinking it never will)

As a mother, having been in your position, I have to add that as some point, depending on when you were infected, you should consider having your children tested.  If they are older, they can make that decision themselves, but they need to know of possible exposure.

I had no clue when I was infected.  I had direct blood exposure when I was very young as well as possible exposure in college.  The hardest thing I ever did was have my daughter tested.  I was assured that the possibility of transmission was minute, and it really is…something like 6%.  Sounds like a small percentage, unless you’re in that 6% like us.  Bottom line, she’ll be treating once Telaprevir comes on the market. LIke me she had no liver damage, she is tx'ing only because she wants to be free of the virus before she gets married and has her own children.  And before she treats, I will have her tested for IL28B.  I am hopeful for her because my response to tx was successful.

I hate having to add that dimension, but the risk is there.

I wish you the best as you navigate these waters.  We’re all here for you,

Isobella
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190885_tn?1333029491
i know bill already mentioned this but don't drink..at all..and at 48 years old i would consider tx as soon as the new drugs come out this summer..get it over with while your young...i have 7 kids..none tested positive for hep..my wife got hep in 1970 well before the kids..not sure when i got it i think in the 80s...anyway..i think it's 1 in 20 that the kids will have it.not sure about that number though...20 percent get rid of it on their own.....better test them....good luck...billy
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Avatar_f_tn
Thank you again to all!!!  

I have another question, don't know if it is a silly question or not.  Hand sanatizer can that be harmful to my liver??  

I am so happy to have found you all and this forum.  The wealth of information is wonderful!!
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Avatar_f_tn
Like you I was recently diagnosed with HCV.  All of the above advice is wonderful.  Be sure to get copies of every test you have and start a medical file of your own.  You'll learn lots as you go along.

So far I have read "Living with Hepatitis C, Fifth Edition: A Survivors Guide" by Gregory T. Everson and found it to be helpful.  I am in the process of reading of "The First Year: Hepatitis C: An Essential Guide for the Newly Diagnosed" by Cara Bruce and Lisa Montanarelli, and am starting to think I should have read this one first.

You can also go the the hcvadvocate.org website and order free copies of "First Steps with HCV for the Newly Diagnosed" (or you can read and/or print it out online).  I found this booklet to be very helpful.

I'm hoping to start treatment when the new drugs come out this summer.  I'm wondering if I have to wait until my treatment medicines are prescribed so I know what I'll be taking, before contacting anyone to get some financial assistance?

Good luck!

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Avatar_f_tn
I just finished my treatment 2 weeks ago. I would like to say that my insurance paid all but $80 a month for the medication. My doctor's office worked with a pharmacy directly and it was already done and I didn't even have to lift a finger. The meds were delivered to my house every month.

I will offer a word of caution...there are some long term effects to this medication. (I am already dealing with thyroid issues). Read the drug info sheet VERY carefully!!!! Make your decision with as much knowledge behind you as possible. And remember, just because a side effect is rare doesn't mean it will not happen. Decide what is more important. (I can live without a thyroid gland...I can't live without a liver)

The best advice is to be as proactive in your treatment as possible.

This is a very rough treatment. I took a leave of absence from work to protect my job. I usually had to take 1 extra day off a week. Talk to your boss...explain what is going on. Communication is the best thing when you really want to protect your job.  
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