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Author Topic: I am soo confused. Do I start treatment or wait?  (Read 14193 times)

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Offline sugarplmfairy6

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  • Posts: 2
I am soo confused. Do I start treatment or wait?
« on: June 10, 2013, 07:00:16 pm »
I am posting to this old thread. I was told i had hepatitis C ..viral load was 800,000.. which is low from what I have read. I had a biopsy and  gastro dr said a little scarring and inflammation and he is sending me on to a nurse <?> who handles hcv in this one area? I am supposdly waiting on the process now of starting treatment. Interferon scares me silly and I have seen posts about these trials. Would I be better off talking to someone about trials ? I feel like I am left hanging after receiving this news and i am in shock. I defianlty want treatment if it is going to help.But gastro dr said I dont have to start treatment.. I am soo confused and the more i read the more confused I get.. Any suggetions appreciated ..:)

Offline jberlin

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  • Posts: 319
  • Contracted Hep C in 76, treated 2004 & 2012, cured
Re: I am soo confused. Do I start treatment or wait?
« Reply #1 on: June 11, 2013, 01:25:51 am »
Hi, this would have been better as a new thread just for clarity sake, but one thing to point out about this post from 2011 versus now is two things.  1.  The two triple therapies had just been OK'd by the FDA in May 2011, and they doubled the cure rate for geno 1 from the old dual therapy, and usually in half the treatment time.  2.  We are two years closer to even better drugs, depending on your genotype, available in approximately 9 to 18 months from now.  What is your genotype?  As has been stated here many times, if a MD says you can wait because your liver is in decent shape, it may be worth waiting for the newer drugs we all anticipate are coming.  If there is some concern that waiting is a risk to your health, then don't wait.

Offline iana5252

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Re: I am soo confused. Do I start treatment or wait?
« Reply #2 on: June 11, 2013, 10:02:27 am »
This thread was originally started on "My doctor tells me I have Hep C and not to worry about it!"

http://forums.hepmag.com/index.php?topic=961

Offline iana5252

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Re: I am soo confused. Do I start treatment or wait?
« Reply #3 on: June 11, 2013, 10:06:47 am »
You are not alone in your confusion on whether to start treatment immediately or wait for the newer drugs. We just posted a news piece where three out of five doctors now recommend waiting.

Most Docs Tell Their Hep C Patients: Wait for New Drugs
http://www.hepmag.com/articles/warehousing_wait_2501_24002.shtml


There are numerous clinical trials taking place around the country. If you would like more information, a good place to start is "Joining a Hepatitis Clinical Trial: An Introduction"

http://www.hepmag.com/articles/hepatitis_clinical_trial_21799.shtml


Offline frankfromatlanta

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  • Posts: 25
Re: I am soo confused. Do I start treatment or wait?
« Reply #4 on: June 11, 2013, 10:19:47 am »
What's your genotype? I'd try to at least wait until the new interferon free options are available. Should be at some point next year for genotype 1 from everything I've read. There are also ribavirin free options in the pipeline but i'm unclear when those will be available.

Offline lporterrn

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  • LucindaPorterRN
    • LucindaPorterRN
Re: I am soo confused. Do I start treatment or wait?
« Reply #5 on: June 12, 2013, 12:14:32 am »
I think the decision process starts with knowing what stage you are. The answer is different if you are in an early stage versus cirrhosis. Has your doctor suggested a liver biopsy or noninvasive liver test? The decision doesn't have to be made today - breathe, get good info and medical advice, and you will know eventually what is best for you. 
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

Offline sugarplmfairy6

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  • Posts: 2
Re: I am soo confused. Do I start treatment or wait?
« Reply #6 on: July 05, 2013, 05:16:37 pm »
Hi I'm sorry..I have not been thinking straight since. My genotype is 1a. My virus load <?> is 800,000. I had a biopsy and I scored a 1 and 2 which I am told is not bad. I am having to get a bunch of blood work done, pysch evalutation etc before I can start the 3 drug treatment. But that interferon scares me. My primary dr keeps telling me I am going to die without treatment. My gastro is assuming i wil start. I have thought about a trial but then think at least the interferon has been out for a while and the worst side effects have shown.. or is there something that is going to pop up later in life. I am 49. I am just real confused right now about this whole thing. Thanks 

Offline lporterrn

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  • LucindaPorterRN
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Re: I am soo confused. Do I start treatment or wait?
« Reply #7 on: July 07, 2013, 11:54:01 pm »
Confusion is normal, but that will get better as you learn more about this. It is especially hard since you will hear different things. Your biopsy stage is between 1 and 2 which is early stage, meaning you can take your time with this decision. I have talked to many of the top experts in the hep C field, and they generally advise patients under stage 3 to wait. Although the treatments that will likely be approved in Jan 2014 will use interferon for your genotype, they are shorter, with better odds, so if you were to try interferon, you wouldn't have to endure it as long. Interferon-free is not far off.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

 


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