Newby not treated

Recently diagnosed for Hep C.My doctor says based on your ethnic background he feels putting off tx. My question, is there anybody out there who's Doctor told them the same thing? Is there any special diet I should be on? Etc.....

[Advocate1955]

I wonder what labs he's waiting for to see if your chance of SVR will be good.  Perhaps it is the IL28B test.  You're relatively young, you're not overweight, and as long as you don't have any other risk factors, it seems like you would be a good candidate for treatment.  I'm not aware of any studies that would indicate that your chances for SVR would not be good.  Some questions that I would write down and be prepared to ask would be:
What is my viral load (it doesn't matter in terms of how little or how much liver damage the Hep C virus is doing, but it's good to know as a starting point)?
What is my stage of liver damage (I don't know if you've had a liver biopsy or not)?
What are my treatment options (I am assuming if he treats you, he will recommend one of the new triple therapies with Interferon, Ribavirin, and either Incivek or Victrelis)?
What does your doctor feel your chances for SVR would be?
Would he recommend a baseline eye exam before treatment?
Would he recommend a dental exam and any necessary dental work before treatment?
Would he check your iron levels before treatment?
How often would he recommend lab work and follow up appointments during treatment?
How would he manage anemia, if you became anemic on treatment?
How will he manage any other side effects that might occur (e.g. rash, anxiety/depression, insomnia, nausea)?
Are there any other procedures or tests that you would need to complete before starting treatment?
Once you and your doctor decide to start treatment and on which therapy, how long will it take to get the medications approved and delivered and be trained by the nurse practitioner to do your injections so that you can get started?
I guess I would be interested in finding out how many patients the doctor currently has being treated for Hep C and who would be directly working with you (probably a nurse practitioner) and how many cases that person is currently monitoring?

These are just some basic questions that are good to know the answers to ahead of time.

Advocate1955

[1oftheclub222]

could you tell us a little more info?

What geno type?

have you had a liver biopsy?

What were the results of the iver biopsy?

Do you know what your viral count is?

any estimation on how long you have had this?

[desrt]

Your doctor needs to take Into account your IL28B test resuts rather than your "ethnic background". While different ethnicities have a higher or lower probablity of a good result on this test, the results are what matter - not your race.

[orphanedhawk]

Some ethnic groups have a  harder time statistically speaking, curing the virus.


As mentioned by 1, more information would help.
What is your genotype"
Do you know what condition your liver is in?
How are your labs>

Personally I don't think viral count or how long you've had the virus are relevant.

[suezeeque]

What is your ethnic background?

It most certainly does make a difference, as does your sex, age and weight.  All these things *may* contribute to your success or failure with threatment.

[1oftheclub222]

My thoughts on that were if the viral count is that when it is lower then 800,000 isn't it suppose to be helpful for treating or something like that?  The other thing I was thinking if they knew what shape their liver was in and approx how long they had it, they might have an estimate of how fast things are progressing...I know it isn't always the case, cause things are not predictable with this disease...but kind of what my thought process was anyway....but you are right, the most important thing is probably type and liver biopsy results...

[suezeeque]

I feel the need to clarify:  I'm not sure if there's any data related to race and SVR with the newer drugs...  Even still, you'll have a bunch of factors to consider when deciding on whether or not to treat.  IMO, any *one* wouldn't be a deal breaker for me.

If I was gen. 1, overweight, male, a senior, with liver damage and African American, I may have a hard time with the decision.

[orphanedhawk]

I really can't speak to the new meds, triple therapy or the oral trials but I'd assume that since Black people have a harder time obtaining SVR, with SOC, that it would be true with the triple tx.
Where is Beeblessed when we need her?

1oftheclub:
When I was diagnosed with hep C and decompenasted cirrhosis, my viral load was 750,000, I've know people with much higher viral loads and no damage.
Viral loads are used during tx to see how well we respond. Otherwise I think viral load numbers are not that relevant.
I do agree that the amount of liver damage is a very important factor to determining when to treat.
Liver damage doesn't seem to happen in a logical linear way with hep C.
Its such a sneaky adaptable virus.
But there's no such thing as too much information:)

[1oftheclub222]

yeah, I know that VL has nothing to do with liver damage, but only used to check response to treatment, isn't there something about over 800,000 VL and under 800,000 VL?  Maybe the lower your VL is starting off the better chance of a quick response to treatment or something like that... it seems I saw something about that, but now not sure what it was, hmmmm, may have to go googling, ha....

[can-do-man]

In SPRINT-2 the majority of patients was male with a mean age of 50 years and a body mass index between 27 and 31, which reflects the common comorbidity of obesity in addition to the hepatitis C epidemic. Most of the patients were infected with genotype 1a HCV, with nearly 75% of blacks infected with this subtype. Most patients had high HCV RNA (> 400,000 IU/mL) and 2% to 15% had METAVIR F3/F4 disease.
The SVR rates were significantly higher in the boceprevir-containing arms vs the pegIFN/RBV control arm; indeed, SVR rates were 63%, 66%, and 38% for patients in the BOC + PR-RGT, BOC + PR48, and PR48 arms, respectively. Relapse rates were lower in both boceprevir-containing arms at 9% vs 22% for the pegIFN/RBV control arm (Figure 3). Thus, once a patient achieves an end-of-treatment response on treatment with boceprevir combination therapy, they are more likely to retain that response after stopping therapy than patients treated with pegIFN/RBV.

Boceprevir-treated patients who achieved undetectable HCV RNA at treatment Week 8 had a high probability of achieving SVR; indeed, these SVR rates were 89% to 91% for nonblack patients and 78% to 82% for black patients. For slow responders (HCV RNA detectable at Week 8 but undetectable by Week 24), SVR rates were lower than those in early responders and appeared to be slightly better in the BOC + PR48 arm vs the BOC + PR-RGT arm: 43% vs 37% for nonblack patients, respectively, and 32% vs 28% for black patients, respectively. The lower response rate found for slow responders prompted the label to include extending the boceprevir therapy to Week 36 in this group.

http://www.clinicaloptions.com/Hepatitis/Annual%20Updates/2011%20Annual%20Update/Modules/DAA%20Naive/Pages/Page%206.aspx  

[can-do-man]

According to the label, some treatment-naive patients should not be considered for RGT but should receive a 4-week pegIFN/RBV lead-in plus a fixed duration of 44 weeks of triple therapy. This includes patients who are poor responders to interferon, defined as those who do not achieve a ≥ 1 log drop in their HCV RNA during the lead-in phase, and all patients with cirrhosis. Therefore, it is important to know if the patient has cirrhosis before beginning therapy.
--------------------------------------------------------
As you can see being black, male age 47 and geno type 1 would not stop you from gaining SVR but doing nothing sure will...... Knowing what stage your liver is in and your geno type would be the first step. Unless there is much more then what you have told us maybe finding a new doctor should be your first step. Good luck, hang in there and welcome to the zoo.

[can-do-man]

Telaprevir SVR & African-Americans, Latinos & Advanced Fibrosis


  
  Reported by Jules Levin

62% of African Americans/Blacks achieved SVR with telaprevir compared to 25% of African Americans/Blacks who were treated with pegylated-interferon and ribavirin alone. Additionally, 62% of people with advanced liver fibrosis or cirrhosis (scarring of the liver) achieved SVR with telaprevir compared to 33% who were treated with pegylated-interferon and ribavirin alone. Old studies of peg/rbv in African-Americans yielded SVR rates of 5-26%.

African-Americans treatment-naïve: 61% had undetectable viral load at week 4 (RVR) and 46% at weeks 4 and 12 (eRVR)- 72% with RVR achieved SVR & 85% with eRVR achieved SVR. Similar for Latinos.



http://natap.org/2011/HIV/050411_01.htm

[Revalation]

My doctors have mentioned that Hispanic and African Americans are more difficult to treat, but we don't your ethnic backround.

I visit a large, urban, teaching hospital and I know they are treating many African American, and Hispanic people. The PA there says so far they've only had to end treatment for one person. I haven't asked her a lot about the patient.  

She definitely said the manufactures of Incivik were really interested in their
work because of the population treated in the area. I would assume that means African Americans and Hispanics. One of the Indian doctors said he thinks there are also more problems treating his ethnic group.

The last time I visited the office I saw a diverse group (mostly white and black) whom I would assume were treating. They were carrying those little books that come with the treatment package. Evidently, the doctor didn't tell any of these people not to treat because of their various ethnic groups.

Also, I saw a video with aHep C Specialist talking about the new treatments.
It also featured an interview with an African American  woman who had treated.

http://www.newschannel5.com/story/14972548/wiping-out-hepatitis-c

I don't know all the factors that relate to race. Maybe if Beeblessed is feeling better she could answer as she is very current on treatment of African Americans.

But, first we need to know what ethnic group you belong to  before we begin to speak this issue.  

Reva

[Advocate1955]

According to the prescribing information for Incivek (telaprevir):  in the Illuminate trial, Blacks/African Americans comprised 14% of the study subjects.  47% achieved eRVR and were randomized into various arms of the trial.  SVR rates among these patients were 88% and 94% in the respective arms, compared to 93% SVR rate in Caucasians.  In the Advance trial, 26 subjects were Blacks/African Americans.  The overall SVR rate was 62%.  31% of these achieved eRVR, and 89% of these achieved SVR.  In the Realize trial, 4% of subjects were Black/African American and 63% of these patients achieved SVR as compared to a 65% SVR rate for Caucasians.

http://pi.vrtx.com/files/uspi_telaprevir.pdf

With regard to SOC, there was also a lower SVR rate for Blacks/African Americans as well as Hispanics.  

Advocate1955

[pooh55811]

I have several factors against me (overweight, 66 yrs old, high viral load of 14.4 mil., Genotype 1). I was/am not happy about those factors possibly affecting SVR, but that did not stop me from starting treatment (2.5 months after being diagnosed).

I am 66 with Grade 2, Stage 2 per biopsy. I have had the virus for 30-35 years. I am not getting any younger and my liver won't get better without treatment. My liver damage could progress rapidly as it seems to do as one gets older. I could develope more diseases down the road that would make it more difficult to treat or even prohibit me from treating. In addition, at Grade 2, Stage 2, depending on how fast the fibrosis progesses, I may not have time to wait for the new drugs that will come out in 4-5 years. It is easier to treat Stage 2 than it is to treat Stage 3 or Stage 4.

I was still detectable at week 4 (less than 43) so I have to treat for 48 weeks and my SVR chances dropped some, but they are still very good.

Personally, if I had it to do over again, I would make the same decision and start treatment just as I did. Those negative factors may be against me and may affect my SVR, but not treating will definitely affect my SVR (or lack thereof).

I also think that when one is actually faced with making a decision about treating even though one has several factors against him/her, the will to live a healthy life and a long life probably becomes the most important factor to that person, trumping those negative factors.  It sure did for me. Being a health care professional (and losing 2 friends to fulminating Hep B), I know exactly what will possibly be in store for me if I don't clear this virus and it is not a pretty picture. I surely will do everything I can to become SVR. Even if I get lucky and don't get cirrhosis or Hepatic cancer, there is still the quality of life (or lack thereof) and potential Hep C related health problems to be considered. So for me, it was a no brainer. I decided to treat as soon as possible and I am happy I did. I still have a very good chance at SVR.

I think each person has to make up his/her mind about if and when to treat based on all factors. Hopefully it will be an informed decision.

[Revalation]

You are absolutley correct. The first step in treatment should be finding the right doctor. Unless there are some other factors we don't know I think your advice is right on!!

About 4 years ago I had a reallly bad experience with a doctor who really did not
have the experience to treat Hep C, but decided to make if part of his practice without understanding how fast things can go bad. When I got in trouble he didn't even know what or how to prescribe neupogen. My ANC all but bottomed out then he got some neupogen and told me to inject it everyday. Need I say more!!!
My treatment lasted less than a week.

Fortunately, a friend who is a doctor had told me if things started going bad
who I should call. The second doctor bailed the first one out and even wrote a
letter indicating the first has referred me to him. As I was reading through my record I found the letter. The second doctor was definitely a real sharp guy.  He is said to be one of the best in the country. However, when I realized he would lie
I thought better of using him. We still communicate by email, but I have another
doctor who's suppose to be at the top of his game and he does not cover for his
colleagues. He calls situations as they are.

[willbb]

Sorry to her about your recent diagnosis. Treatment today is approx. 70 -80% successful for previously untreated patients(tx. naive).This depends on many factors of which yes, race can factor somewhat into the equation .
However there are so many variables(as some were mentioned above)  that a doctor to defer treatment based "only " on race may be cause to seek a second opinion .
Is your doctor a gastroenterologist  or a hepatologist,experienced treating HCV .with the new modalities available?
If not either of these would be recommended to ascertain your viability to treat after running all the appropriate tests.

Good luck and welcome...
Will

[Advocate1955]

According to the 2009 practice guidelines from the aasld, HCV occurs at a 3% higher rate among African Americans and at a 1.5% higher rate among Hispanics.  Various studies cited in these guidelines demonstrated 19-37% SVR rate for African Americans and Hispanics using SOC.

http://www.aasld.org/practiceguidelines/Documents/Bookmarked%20Practice%20Guidelines/Diagnosis_of_HEP_C_Update.Aug%20_09pdf.pdf

These guidelines were updated in 2011 to reflect the new triple therapies.

Advocate1955

[Advocate1955]

I agree with the statements above.  Although my husband is Hispanic and has other factors not in his favor (Cirrhosis, age 59, male), he has chosen to treat three times thus far.
Advocate1955

[pooh55811]

I am sorry to hear about your diagnosis. I just want to welcome you and let you know that this is a great forum for obtaining information and answers to questions as well as for support. There are many extrmely knowledgeable people on this forum who are more than willing to answer your questions and offer their experience, opinions, and support.

[willbb]

Sorry .You also asked about diet. For the most part unless you are chirrotic there are really no diet resrtictions ,other than abstaining from alcohol and trying to eat a well balanced diet and  keeping weight as close to optimum as possible.

Will.

[Revalation]

You Go Girl

Thank, I have some of the same factors as you and I
plan to treat. You Go Girl.

Keep in touch...

[beeblessed]

Rumor has it someone was looking for me :0)

Welcome.  Sorry to hear this news.  As we are all assuming you are geno 1, I hope my story will help.  I found out I had Hep C in 2009.  A total shock and very confusing and heartbreaking.  I did not find this forum until 2011, when my doc suggested I wait for FDA approval of the new drugs.  My race DOES play a factor in this, as we do have significantly lower results on just the SOC's.  Now with the addition of the newer drugs, they are seeing better results for African Americans.  Problem is......up until now, the percentages of African Americans being treated at all (for several reasons), was also lower, so the data by comparison, doesn't exist to tell the full story.  However, you have some great info listed above, that you can share with your doc.

On triple, I have been somewhat of a guinea pig because of side effects and dose reductions.  BUT, my doc says I am still doing much better than they expected.  If I were you......I would get a second opinion.  I think maybe your doc hasn't given you enough information.  I wonder if he/she feels you will have a better chance with future drugs or what?  Also, you may not want to be his/her first ethnic patient, since they have already expressed doubt.  Wishing you all the best.  Here is a link to one of my threads:

http://www.medhelp.org/posts/Hepatitis-C/UND-African-American/show/1619165

And, feel free to look at my journal too.
Bee
Ouchy.  Gotta stop typing for now.

[nygirl7]

I am (was) young, tall, skinny and Caucasian (no Italian jokes here you guys). I had a low VL of 568,000. I was geni 1a and b ( doesn't matter).

I pretty much double dosed my meds. Still at week 4excellent response until it flat lined and stayed the same. We a had no PIs...but we did what we had to do. Some of us got the extra benefit from extending tx, some didi not.

What I am trying to say is, it's a craps shoot. You have better drugs than we did - and still some of us had a hard time winning. Just listen to what your biopsy says and if you need to treat - do it hard and win.

You CAN.

[nygirl7]

Ps Bee is going to win, is inevitable :)

[rkt0211]

Thanks so much for all of you input. My doctor is the Head Doc in the Organ Transplant Department. He is both a Gastro and Hepatic doctor. My Geno type 1b with an ethnic background 1/2 Chinese 1/2 White. I was diagnosed beginning of January. Age 47 , hgt 5.11" wgt 160 slim build. Thanks again for everyones input.

[Advocate1955]

I would suggest making an appt and talking with your doc again. Unless I'm missing something, your chances for SVR should be quite good with treatment. I would ask him why he said that and review your options again with him.
Advocate1955

[rkt0211]

My doctor suggested I wait if my labs show good results then my chance of SVR is good. I seey Doc in a week I will keep you posted. Thanks for the advice. Any question I should ask him?

[Advocate1955]

I wonder what labs he's waiting for to see if your chance of SVR will be good.  Perhaps it is the IL28B test.  You're relatively young, you're not overweight, and as long as you don't have any other risk factors, it seems like you would be a good candidate for treatment.  I'm not aware of any studies that would indicate that your chances for SVR would not be good.  Some questions that I would write down and be prepared to ask would be:
What is my viral load (it doesn't matter in terms of how little or how much liver damage the Hep C virus is doing, but it's good to know as a starting point)?
What is my stage of liver damage (I don't know if you've had a liver biopsy or not)?
What are my treatment options (I am assuming if he treats you, he will recommend one of the new triple therapies with Interferon, Ribavirin, and either Incivek or Victrelis)?
What does your doctor feel your chances for SVR would be?
Would he recommend a baseline eye exam before treatment?
Would he recommend a dental exam and any necessary dental work before treatment?
Would he check your iron levels before treatment?
How often would he recommend lab work and follow up appointments during treatment?
How would he manage anemia, if you became anemic on treatment?
How will he manage any other side effects that might occur (e.g. rash, anxiety/depression, insomnia, nausea)?
Are there any other procedures or tests that you would need to complete before starting treatment?
Once you and your doctor decide to start treatment and on which therapy, how long will it take to get the medications approved and delivered and be trained by the nurse practitioner to do your injections so that you can get started?
I guess I would be interested in finding out how many patients the doctor currently has being treated for Hep C and who would be directly working with you (probably a nurse practitioner) and how many cases that person is currently monitoring?

These are just some basic questions that are good to know the answers to ahead of time.

Advocate1955

[Advocate1955]

http://www.medhelp.org/user_journals/show/332526/Incivek-or-Victrelis