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Author Topic: genyo type 1a  (Read 5185 times)

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Offline figuringitout

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genyo type 1a
« on: May 03, 2017, 01:27:05 am »
So we found out gyno type is 1a. Nurse said that his fibra something was high? But not very high. We have an appointment with specialist. Does anyone know what to expect? How long until we can begin treatment? I feel like with more answers came more questions. How to we know if relapse is likely? Is there any way to know? Thank you all so much

Offline gnatcatcher

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Re: genyo type 1a
« Reply #1 on: May 03, 2017, 08:49:00 am »
Hi, figuringitout. The "fibra something" was probably "fibrosis" (how thickened or scarred the liver has become because of the HCV). It is labeled from F0 (none) through F1, F2, F3 (increasing amounts of fibrosis) to F4 (cirrhosis). Based on what the nurse said, you're probably in the F1 to F3 range. The specialist will tell you precisely and may have you do other tests so that your insurance company will have all the info it requires before deciding whether to approve treatment. The specialist should be able to tell you how long the insurance approval process should take, as well as the medicine being prescribed and how long you'll be on it. These days, the typical medicines for genotye 1a (such as Harvoni) consist of a pill a day for 8 or 12 weeks depending on your fibrosis level and viral load (measurement of how much HCV is in a milliliter of your blood at the time the blood test is taken).

With all of the current medicines, relapses are extremely rare. No one has a crystal ball to determine ahead-of-time who those unlikely few relapsers will be, but having a relapse just means being treated with a different medicine the second time.

Welcome to these forums. Feel free to ask more questions.

Gnatty
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline figuringitout

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Re: genyo type 1a
« Reply #2 on: May 03, 2017, 09:42:34 am »
My husband wants me to ask if anyone knows percentage of kids getting hepc. He is a construction worker. So his hands are always beat up. How biggest fear is them catching it. Our kids are young have bloody noses etc... My thoughts are as long as his cuts aren't ACTIVELY bleeding and then activly bleeding it should be ok.

Offline lporterrn

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Re: genyo type 1a
« Reply #3 on: May 03, 2017, 09:06:32 pm »
We don't know if kids contract hep C this way, although if they were to be at risk, active bleeding would increase the chances. It is what we call a theoretical risk, but we don't have documentation that anyone has contracted hep C in this way. We all worry about passing it on to others via routine casual contact, but in fact, it is probably not worth the worry. Keep toothbrushes and razors away from others, use bandaids when actively bleeding, and the rest should be OK. He'll probably worry until he is cured. It's just what we do.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline Lynn K

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Re: genyo type 1a
« Reply #4 on: May 03, 2017, 10:15:27 pm »
As Lucinda has said there have been no known transmissions in this way. But yes this is something we all have worried about is the risk of infecting others.

Hep c transmission in a household is rare just don't share toothbrushes, fingernail clippers or razors. Hep c infected blood has to enter the blood stream of an uninfected person.

I concerned to put your minds at ease you can be tested for hep c antibodies but t is more likely than not  that no members of your household are infected except your husband.

Best of luck to you.
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline figuringitout

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Re: genyo type 1a
« Reply #5 on: May 03, 2017, 10:58:35 pm »
Did anyone get really sick from treatment?

Offline Lynn K

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Re: genyo type 1a
« Reply #6 on: May 04, 2017, 12:08:15 am »
The majority of patients in the clinical trials reported minimal side effect the most commonly reported were mild headaches and tiredness.

It is suggested to make sure you are drinking the amounts of fluids we all should be drinking anyway the old eight glasses a day as keeping properly hydrated seems to help reduce headaches.

While unfortunately some folks here did report having symptoms beyond what was found in the clinical trials a clear link between treatment and what those people have experienced has not been established. However, the majority of patients found treatment to be easily tolerated.
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline lporterrn

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    • LucindaPorterRN
Re: genyo type 1a
« Reply #7 on: May 04, 2017, 02:49:18 pm »
As Lynn said, most patients do well with treatment. It's impossible to quantify since we assume that those who have an easy time of it aren't using forums or chat rooms. It's also hard to quantify because we don't know who is having a hard time because of cirrhosis or another comorbidity. What I do know is that this treatment usually cures hep C, but usually doesn't cure cirrhosis. It's like someone who has neuropathy or lost eyesight from diabetes. Even if you control diabetes, the neuropathy and loss of eyesight remain. There are exceptions with cirrhosis, but they are exceptions, not rules.
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline gnatcatcher

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Re: genyo type 1a
« Reply #8 on: May 04, 2017, 10:03:50 pm »
While a person with cirrhosis (F4) may not return all the way back to zero fibrosis (F0), liver specialists are finding that there is more improvement than they used to think was possible. According to fibroscans (special ultrasounds that measure fibrosis level), I went from cirrhosis (F4) before treatment to F3 nine months after the end of treatment to borderline F2/F3 six months after that, and my hepatologist thinks I may be at only F2 at my final fibroscan nine months from now. Someone on these forums who goes by Beto had an even more dramatic drop than I did.

As far as getting really sick from treatment, with any medicine for any condition, a particular person may have some sort of allergy. Millions of people take the common medicine Zantac without incident, but I had brain swelling whenever I took it. Harvoni was easy for me, as it is for the vast majority of people who take it.
9/29/71 transfusions
HCV genotype 1a
7/09/15-9/30/15 Harvoni

Before treatment:
Viral Load 9,490,582
FibroScan 19.5 kPa [F4]
ALT 262
AST 217
ALP 183

Most recent:
VL still UNDETECTED (SVR 102)
FibroScan 7.6 kPa [F1-2]
ALT 15
AST 20
ALP 85

Offline Lynn K

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  • Get tested, get treated, get cured, fight Hep c!
Re: genyo type 1a
« Reply #9 on: May 04, 2017, 10:39:22 pm »
Just to add I was diagnosed with cirrhosis in Jan 2008. My experience has not been quite as optimistic.

My pretreatment Fibroscan score 27 one year after I completed treatment my Fibroscan score had increased to 33 so not really a good sign. I chalk up the difference to different technician different day so I figure the 6 point increase does not mean much.

But it does probably mean that if I am able to improve it is going to take a long time. But with cure at least the damage to my liver from hep c has stopped.

Oh yeah almost forgot. Today is my 2 year anniversary of ending treatment.

May the forth be with you!
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline figuringitout

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Re: genyo type 1a
« Reply #10 on: May 04, 2017, 11:25:29 pm »
Congrats on2 years!!! That's wonderful. He is just worried about possibly taking time off work for treatment. Steven Tyler has said hi a treatment was so intense compairing it I cemo.

Offline Lynn K

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  • Posts: 4,241
  • Get tested, get treated, get cured, fight Hep c!
Re: genyo type 1a
« Reply #11 on: May 05, 2017, 12:31:17 am »
When did Steven treat?

Ok I just looked it up he treated for 11 months back in 2006 so that would have been one shot a week of interferon along with other medicines probably ribavirin. The new generation meds were approved starting in late 2013 and Harvoni was approved in October 2014.

The old treatment with interferon and ribavirin were miserable I can attest to that as I treated with interferon based treatment on 3 separate attempts to be cured. These new meds for most of us old time treaters have been called a walk in the park in comparison with the old ones.

I started treatment with Harvoni in November 2014 less than one month after it was released by the FDA. Because of my treatment history of multiple treatment failures and having cirrhosis I treated with Harvoni for twice as long as normal. I took Harvoni for 24 weeks and just to make sure my  treatment was successful my doctor and I decided to add ribavirin to my treatment after I started so I ended up taking ribavirin for 15 of my 24 weeks of harvoni. The ribavirin made me anemic as it did on previous treatments with that med so I felt a little tired from that but for the 9 weeks it was just Harvoni I felt fine.

Good luck
« Last Edit: May 05, 2017, 12:33:42 am by Lynn K »
Genotype 1a
1978 contracted, 1990 Dx
1995 Intron A failed
2001 Interferon Riba null response
2003 Pegintron Riba trial med null response
2008 F4 Cirrhosis Bx
2014 12 week Sov/Oly relapse
10/14 fibroscan 27 PLT 96
2014 24 weeks Harvoni 15 weeks Riba
5/4/15 EOT not detected, ALT 21, AST 20
4 week post not detected, ALT 26, AST 28
12 week post NOT DETECTED (07/27/15)
ALT 29, AST 27 PLT 92
24 week post NOT DETECTED! (10/19/15)
44 weeks (3/11/16)  fibroscan 33, PLT 111, HCV NOT DETECTED!
I AM FREE!

Offline Mugwump

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  • My number of posts means nothing, piscor ergo sum!
Re: genyo type 1a
« Reply #12 on: May 05, 2017, 02:43:07 am »
My husband wants me to ask if anyone knows percentage of kids getting hepc. He is a construction worker. So his hands are always beat up. How biggest fear is them catching it. Our kids are young have bloody noses etc... My thoughts are as long as his cuts aren't ACTIVELY bleeding and then activly bleeding it should be ok.
I am a father and during my infection there were many times that I changed diapers, dealt with things like putting band-aids on my children, wife and relatives. Before 1993 when I found out that I had HCV,  I worked at jobs that frequently made my hands bleed. Then I would come home, cook supper, wipe the tears from my childs eyes, change their diapers and embrace them, in general live as a human must if they wish to have a good life.

I fully understand his concerns and when I was diagnosed in 1993 the fear that it put in me almost led to despair. However I have not to my knowledge passed this disease on as all who I have been in contact with have been informed and tested. None have the disease.

Take great heart in the fact that spreading this disease other than by some form of direct injection of viable virus particles into someone else blood stream is highly unlikely. I am not saying that it cannot happen but if reasonable precautions are taken it will never occur. He does not have to go to extremes or worry, I assure we all go through this at first until we get a handle on the disease. Most of all encourage each other to not let HCV rule your lives, do not let HCV also become a disease of the spirit.

All my best to both of you!
Eric
Caution shameless self promotion below :-)
https://www.hepmag.com/article/eric-reesor-27742-782589663
DING DONG MY DRAGON (HCV) IS FINALLY DEAD!

 


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