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Hep C Discussion Forum -> General Discussion -> First Liver Specialist Appt - what do I ask?
Post Info TOPIC: First Liver Specialist Appt - what do I ask?
Matt Chris


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RE: First Liver Specialist Appt - what do I ask?
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Hello Envigo

Welcome to the forum , sounds like you have a great Doc. waiting because of your present good health is a wise choice. You must be living a clean healthy life, keep it up and before you know it there will be many better choices of treatment or perhaps a clinical trials which can save you thousands of dollars. Of course you should never sacrifice your health for free health care.

Matt



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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
Zlikster


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Hi Envigo

Genotype 2 is the easiest to treat indeed! your chances with old riba+int therapy are over 90%! I ain't doctor to give you medical advice, but if i were in your situation i would wait for new meds to be available without interferon. All points to double DAA + ribavirin therapy for 3months and considering your genotype, you again got over 90% chance of SVR. So don't fear, stats are on your side and if you can get into clinical trial with DAA+riba meds go for it!




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GT 3 dg. 08-2012 / FibroScan: 5 kPa F1 / FibroTest: F0-1 A1 / SoC TX: PegInt 120mcg+Riba 1000mg UND from w8 relapse EOT+4w
01-2016 Sof+Dac+Riba UND from w8, SVR24!
Enavigo3891


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My doctor called me yesterday morning with the results of the additional blood work he did as well as my genotype. He said that as he suspected, all my blood work is perfect. Aside from "the big C" i'm perfectly healthy and everything in the ole' gut is working just fine!  He said I am genotype 2 and explained the pros and cons. He explained that while it's shown to be the easiest to treat, since it only accounts for 10-15% of the HepC infection in the US that the treatment is pretty much still limited to ribavrin and interferon. He said there are some new ones in the works for 2 and they will most likely be doing some clinical trials at the transplant center where I go to see him. So for now, my plan remains as it was a few weeks ago... sit tight for now, continue reading things and check back with the doc in September!



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Born HepC + in 1983 ... diagnosed @ age 13 ... GT2 ... 12 wks of Sovaldi/Riba from 2/11/14 to 5/5/14  #ribazombie

1/30/14 - Starting VL 1,922,967 * 3/11/14 - UND @ 4 wks * 7/29/14 - SVR12 * 11/6/14 - SVR24 * May 2015 - SVR52 * MAY 2016 - STILL UND * FEB 2018 - STILL UND

 
britlitkaren


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It sounds like you got some good news! I'm glad your blood work is all within a "normal" range and you are in good hands. Having a Dr you can trust is half the battle...
@ enavigo You've landed in a good place. Keep on reading and post any question you don't find answers to. There is so much to learn. You're young and if your liver is not in bad shape according to blood work, maybe a biopsy can wait.
Find a doc you can talk all this out with. One who listens. Let us know how it goes! Karen:)

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Diag 8-10. 1st VL 600,000. Gen 1a. Grade 4 Stage 4 cirrhosis w/ Esophogeal varices level 2. Viral load 1,750,000 7/12/10. Triple Therapy w/ Telaprevir began 7-15-11
tomyboy


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Sounds like you received some positive news.  New treatment with less side effects is right around the corner. From what I hear the, the clinical trials are wonderful.   Please keep posting your results and best of luck to you!!!!

biggrin



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Geno type 1,��after 20 YEARS Harvoni finally arrived....after six prior treatments...�Began harvoni for 24 weeks.....30 days viral count....STILL 0.......Tom now HEP C and Cancer FREE

Enavigo3891


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Thank you for the replies.  I just got back from my appointment. The doctor seems very cool and knowledgeable.  Doc said that my liver function test results were "perfect" which is good to see considering having the virus for 30 years. Since I've never in the past had an abnormal liver function test he said he likes what he sees. He confirmed that my VL is low comparatively (although I know that doesn't always mean much).  At this time he sees no reason to jump into a liver biopsy. He said it was up to me, I told him that he is the specialist and asked what he recommends; he said that if it were him he would wait. I did get some more blood taken as they are going to genotype me as well as check two other liver enzymes that were not included in the liver panel a few weeks ago but based on the other results he has no reason to believe these new tests will be an issue. He also scheduled me for an RUQ Ultrasound to check size and shape of liver and stuff to establish baseline. If for some reason the results of these additional blood tests or the ultrasound reveal any abnormalities, then he said he will re-discuss the biopsy situation. As far as treatment, he said that he would recommend I hold off for now considering how good my other test results are. He said that there are several new drugs that are expected to get FDA approval this year and wants to look into those. He is also running a clinical trial (I didn't get the names of the meds though) and he does need 1 more 1b candidate for that trial so if I come back 1b he is going to give me a call to discuss that trial further and his thoughts. But for now, things are looking good, I have no other health issues that may comprimise my current status.  Follow up appointment scheduled for September to discuss what drugs receive approval between now and then as well as what is expected for early 2014! 



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Born HepC + in 1983 ... diagnosed @ age 13 ... GT2 ... 12 wks of Sovaldi/Riba from 2/11/14 to 5/5/14  #ribazombie

1/30/14 - Starting VL 1,922,967 * 3/11/14 - UND @ 4 wks * 7/29/14 - SVR12 * 11/6/14 - SVR24 * May 2015 - SVR52 * MAY 2016 - STILL UND * FEB 2018 - STILL UND

 
tomyboy


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Yes biopsy first...Geno type will determine the most effective treatment for you. Good luck, it sounds like you are stepping the right direction. 



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Geno type 1,��after 20 YEARS Harvoni finally arrived....after six prior treatments...�Began harvoni for 24 weeks.....30 days viral count....STILL 0.......Tom now HEP C and Cancer FREE

Biggyb


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Biopsy the first thing doc did for me, back in 99.  They say it tells the tale of what condition liver is in..Good luck...



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58 yo..Relapsed in 99 and again in 2004. Started triple therapy with Victrelis July 22,2012.  genotype 1a. week 8,12,16,24 VL Undetectable..E.O.T -- 6-22-2013,,,EOT + 24., UND. 

SVR !!!

 

~Bob~
JoAnneh


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Welcome to the forum!
Yes, you need genotype.
Biospy is best way to get most accurate
Reading of the liver. My functions were normal
Had to have my gallbladder removed and
When they took biospy found out I have chirrosis.
You are A LOT younger than I, My wish is you
beat this disease while
Your liver is still healthy and you are still
Young. Get it over with!
Excited you are getting to see a specialist!
You are well read!
Doc will need to have all facts before deciding
Treatment plan and some people choose to
Wait for easier treatment.
The biospy will tell you facts!
Best wishes and God bless you:)
Keep us posted


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JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!
Enavigo3891


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Hello Everyone...

<---- NEW HERE so please bare with me!  biggrin

I am a 29 year old female (will be 30 in less than 2 weeks).  I first tested positive for HepC at age 13. My sister (16 at the time) was undergoing standard pre-op for a surgery when she tested positive. They thought it was a false + so they retested her and me and we both came up positive. Since we both have it, they assume we were born with it although our biological mother died when we were 1 and 4 so there's no way to know for certain and my father refused to be tested. Both parents had injury related blood transfusions long before they tested for HepC and they were IV drug users together so considering my sister and I were so young at the time of diagnosis, that's the only thing we can attribute it to. 

I faintly recall seeing a liver specialist back then who if I remember correctly basically told us that we would just need to be monitored for life and that treatment wasn't an option. Maybe because it was so long ago and we were so young, I don't really recall the specifics.  Occassionally my PCP would do blood work and run viral loads and liver function tests. All appeared okay I guess as we were never directed back to a specialist. I moved out of state about 1.5 years ago and just got a PCP here last month. She ran same blood work, called and told me that my viral load was "high" and that I should see a specialist immediately. When I got the test results I was a bit surprised at her urgency as my liver functions were all totally normal, every single test they ran was normal except I was low on Vitamin D. My viral load is 305,756 Iu/mL. I rummaged through old paperwork and found a lab result from 2002 where my viral load was 448,000.  So comparatively, it's not "HIGH" in my opinion but I guess what I'm reading online says that the viral load itself doesn't indicate how "sick" you may be. Either way, I've been assigned to one of the top liver specialists in my area and have an appointment on Friday morning with his PA.  I bought a notebook... did some research... but I'd like to know what questions I should ask.

I know that I will need more blood work as I have no idea what genotype I have. I have read numerous different things about biopsies; like that they shouldn't be rushed into as first it's important to know what genotype you are and that sometimes ultrasounds or other non-invasive options are available to see if sticking a giant needle in my liver is even necessary right away. I just want to go in there friday as educated as possible as I want to be sure they are not just running up a tab from the get-go and rushing things.  I'd like any and all feedback/suggestions you all may be willing to share with me.  

Thank you!!! 

 

 



__________________

Born HepC + in 1983 ... diagnosed @ age 13 ... GT2 ... 12 wks of Sovaldi/Riba from 2/11/14 to 5/5/14  #ribazombie

1/30/14 - Starting VL 1,922,967 * 3/11/14 - UND @ 4 wks * 7/29/14 - SVR12 * 11/6/14 - SVR24 * May 2015 - SVR52 * MAY 2016 - STILL UND * FEB 2018 - STILL UND

 
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