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Author Topic: Wait for new treatment?  (Read 684 times)

Offline haveHeptC2

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Wait for new treatment?
« on: November 26, 2011, 02:01:29 PM »
Is there anyone else who is waiting for the new non-interferon treatment that is supposed to be available 2014?  I have had hep C for 33 years and never treated.  The new one is only supposed to be 12 weeks and 90-100% effective.  My doc says it's better to treat with Interferon while my labs are so good.  My viral load is 58,000.  I want to wait it out but I'm afraid I'll wait too long.
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Offline alice

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Re: Wait for new treatment?
« Reply #1 on: November 26, 2011, 02:37:56 PM »
that depends on many factors... what stage of liver damage you have is one big consideration. Also, these new drugs sure look good but until they hit the market, they are not available (except in clinical trials) and there is no guarantee they will make it to market in the time frame you desire, if ever. Waiting for new drugs is a bit of a gamble but if you have minimal damage it might be OK.

Any chance you might be able to get into a clinical trial?

good luck
alice
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Offline greyrocker

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Re: Wait for new treatment?
« Reply #2 on: November 26, 2011, 03:16:50 PM »
I agree with Alice, especially about the state of your liver. Plus, a couple more things to consider; your VL is very low, which increases the likelihood of tx success, and being genotype 3 means only 24 weeks instead of 48 like some of us. Given that, ask your doc and I would bet they would be telling you 80+% success rate.

good luck, keep us posted

greyrocker
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And as we let our own light shine, we unconsciously give other people permission to do the same. Nelson Mandela
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Offline ScaredyCat

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Re: Wait for new treatment?
« Reply #3 on: November 27, 2011, 03:14:34 PM »
Hi.
After an unsuccessful clinical trial my docs suggested I wait for treatment too.  I am not at all comfortable with this as I keep reading that my liver damage can increase quickly as I age -I have 1-0 liver damage right now. "They" said "At least you don't drink. You can live a normal life." Oh sure - the other day I handed some clients some papers and didn't realize I had a paper cut.  There was blood all over the back.  I ripped those papers out of their hands and reprinted them -they must of thought that I was giving them some info I didn't want them to know about.  Anyway - I am not living a normal life. I would love a glass of wine or some Absinthe  :cool: :tongue:
The cat scratched me and then Mr ScaredyCat. I am around children sometimes and it worries me sick.
I will either wait or try to get into a clinical trial -but I want to do something. Let us know what direction you go in.
Good luck-
ScaredyCat
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Yikes! Did 24 wk clinical trial with Lambda Interferon. UND at week 12 & 24. Relapsed after one month. No VL test at weeks 4 & 8. I would get myself tested at week 4 and 8 next time I treat if the doc doesn't order it.

Offline MidKnight

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Re: Wait for new treatment?
« Reply #4 on: November 27, 2011, 04:38:54 PM »
It's normal to freak out a little. Not so bad when you realize how hard it is to transfer. Normal due care, keep it covered .
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Offline DougV

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Re: Wait for new treatment?
« Reply #5 on: November 28, 2011, 12:22:05 AM »
I did phase 2b trial for maintence drug.  Looked good, normalized liver function and kept it there.  They were getting ready for phase 3 trials when they made the lovely discovery that it increased risk of hepatic cancer and it was pulled.

Other drugs have made it to phase 4 before finding out it didn't help.  Others like Vioxx were pulled from the market after being released.

Had a biopsy?  Know where you stand now?  If not how bad do you want to gamble on what might happen?  Especially when the bet you are making is your life?

Doug
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Offline Feb4

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Re: Wait for new treatment?
« Reply #6 on: November 29, 2011, 05:37:36 AM »
Hi HHC2.
With your genotype and your low VL I would side with your MD. It is a gamble to wait for a new drug that works to come along. I waited and watched as VX-950 grew up in the pipeline for 5 years and finally came into being as Incivek. As I got older waiting for a new drug to hit the market, the one thought that kept coming back to me was, "what if something else happens to me while I wait?" Then I'll have that and Hep C to deal with too. I think that is what really helped me make my decision to treat when I did. I am healthy, blood work is good and I have no other medical issues to compound the problem. You don't want to gamble with your life and take the chance that you acquire another medical issue while your waiting to treat. Strike now, and good luck. We're here if you need the support or want to bounce thoughts off of. Take care.
F4
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Offline haveHeptC2

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Re: Wait for new treatment?
« Reply #7 on: November 29, 2011, 02:33:24 PM »
Thank you everyone for all of your input.  I am on track to start treatment October 2012 with Interferon, sooner if my labs go haywire.  I had a biopsy 10 years ago and it showed no damage.  I love being able to hear from all of you that have this crummy disease because other people don't get it.  I have been clean & sober for 22 years and I think that has a lot to do with why I have been able to wait as long as I have to treat.  The clock is ticking though.
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Offline greyrocker

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Re: Wait for new treatment?
« Reply #8 on: November 29, 2011, 02:43:04 PM »
Quote from: haveHeptC2 on November 29, 2011, 02:33:24 PM
I have been clean & sober for 22 years and I think that has a lot to do with why I have been able to wait as long as I have to treat.  The clock is ticking though.

I agree, HHC2, I was 15+years clean when I first found out, 16 1/2 when I started tx. My liver was in pretty good shape & I had a low viral load. I can't even imagine what kind of mess it would have been, provided I lived that is... :confused:

greyrocker
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And as we let our own light shine, we unconsciously give other people permission to do the same. Nelson Mandela
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Offline banarep

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Re: Wait for new treatment?
« Reply #9 on: November 29, 2011, 03:59:14 PM »
10 years is a long time for a biopsy.  if it were me, I would get another one.  not sure how old you are (and Texas manners dictate that I can not ask) but as we age, our immune systems weaken and the virus does more damage more quickly. 

just saying.
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I hate to advocate drugs, alcohol, or insanity to anyone, but they've always worked for me.    Hunter S. Thompson

Offline hepcatts

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Re: Wait for new treatment?
« Reply #10 on: November 29, 2011, 05:01:16 PM »
I wonder why your Doc wants to wait until next fall to start. My doc scheduled me as soon as they had an appointment, once Incivek was released. She told me she had a patient go from stage 2 to stage 4 in 2 years, but I didn't quiz about life style. I also had another doc tell me they only start treatments in the spring because of the depression. They feel it is easier to handle when the weather is nice and the sun is high. Right now is my least favorite time of year, but the depression meds are working fine.   Kirk
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Offline Steph

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Re: Wait for new treatment?
« Reply #11 on: November 29, 2011, 09:01:24 PM »
The opinions and advice here seem sensible to me also, HHC2. I bet you could knock this thing out in 24 weeks.

RE: time of year to treat. . . I don't know for sure that everyone gets terrible depression with treatment. There are side effects to one degree or another for most, which are irritating, but there's no predicting how a person's going to react. I'm beginning week 7 of Incivek, interferon, riba and am able to function pretty much normally. Did have my doc prescribe an SSRI before I started treatment. It being winter I find to my advantage because there's so much less going on at my particular job, and with the decreased light people are staying in more (which means I'll be napping : )

The new drugs approved this year are a sure thing. New treatments may or may not materialize.

Glad you're here. ~ Steph
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Offline haveHeptC2

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Re: Wait for new treatment?
« Reply #12 on: November 29, 2011, 09:36:10 PM »
What is SSRI?  I am waiting until next fall, that isn't the doctor's decision.  My work slows down through the winter and also my boyfriend just got through with 24 weeks of Interferon and we kind of need a break.
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Offline greyrocker

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Re: Wait for new treatment?
« Reply #13 on: November 29, 2011, 09:55:01 PM »
SSRI's are a type of antidepressant, like celexa, zoloft, paxil...

GR
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And as we let our own light shine, we unconsciously give other people permission to do the same. Nelson Mandela
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Offline hepcatts

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Re: Wait for new treatment?
« Reply #14 on: December 02, 2011, 01:51:34 PM »
SSRI Selective Seratonin Reuptake Inhibitor. Basically modern psychiatrists are meds managers since they now attribute most depression to chemical imbalances in the brain. Seritonin I believe is one of the main chemicals involved in current flow between neurons in the brain. I had the advantage ( if you can call it that ) of being a year into depression treatment before tx. I had a scary time with some SSRI's and my doctor would tell me over and over that it can be a long process to find the right med combo that works for an individual. Bupropion with Lexapro works great for me. I cycle between low dose trazodone, ambien, and hydroxyzine for sleep aid. 5 mg (very low dose) Ambien works well, and doesn't leave me too groggy in the AM.  Kirk
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