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Hep C Discussion Forum -> Clinical Trial Participants -> The journey begins
Post Info TOPIC: The journey begins
Cinnamon Girl


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The journey begins
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Mel48 wrote:

Jill it looks like the one I am on but not the 12 weeks.  6 months is what I understand but I will clarify.  I am also military in San Antonio Texas, This study does not indicate it is taking applicants from Ft. Sam in Texas.  I will find out exactly which one it is so I can clarify for you.  I do know there are 180 people from the US if that helps :) I stay confused

 

Ok, thanks Mel.  This is the only one I could find listed that fitted your description, but maybe the one you`ll be doing hasn`t appeared on the website yet.  Although if you`re only doing 12 weeks of peginterferon then I should imagine that would be the length of the trial you`re doing.  Anyway, you should have a much better idea of the details after your next visit.  smile  ~ Jill



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Tig


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Peg-Int. is a once weekly injection.



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Tig

67yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

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Mel48


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YES 12 weeks for the Peginterferon.  Is it daily?  My paperwork doesn't say?



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Mel48


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Jill it looks like the one I am on but not the 12 weeks.  6 months is what I understand but I will clarify.  I am also military in San Antonio Texas, This study does not indicate it is taking applicants from Ft. Sam in Texas.  I will find out exactly which one it is so I can clarify for you.  I do know there are 180 people from the US if that helps :) I stay confused

 



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Cinnamon Girl


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Hi Mel, this looks like the trial you`ll be on, which is only for genotype 1, so you`re probably right about having gen 1a.

http://www.clinicaltrials.gov/ct2/show/NCT01598090?term=hepatitis+c+bms&rank=54

Yes, I`ve read that Peginterferon lambda comes with easier side effects and is better tolerated.  It looks like you`ll only be doing 12 weeks which isn`t too bad anyway.

Hep C certainly can cause various symptoms including aches and pains, although not everyone has them, but it would be very difficult to say whether the pain in your left leg is definitely related to having Hep C.  I should think it`s worth seeing the pain specialist anyway.

Let us know how you get on, and best of luck!  ~ Jill



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Mel48


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Thank you I will get the information when I go next week.  I believe I am a 1a vl 700,000 I think but not sure.  I will be taking ;

Telaprevir

Peginterferon lambda -1a or Peginterferon alfa-2a (this will be a blind study)

Ribavirin 

 

I am praying I get the new drug, as the side effects are supposed to be much lighter - 

 

I have been shipped over to a pain specialist for pain in my left leg and next week.  Any suggestions of what might help them to understand this is hep c related?  Every doctor so far has looked at me confused and said there are side effects to Hep C and most people don't even know they have it?  It makes it really hard to explain that I am in pain on top of everything else.



-- Edited by Mel48 on Tuesday 16th of July 2013 07:21:28 PM

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Mel48


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I was approved for treatment YEA!!!!! We start on the 24th, Bristol Myers. I have an appointment with a pain specialist next week. Not sure what to expect form them but onward and upward. I see all the stats posted on the bottom of everyone's post but I am not sure what they mean so could someone clarify for me so I can ask when I go in to start my treatment. I am anxious of course but excited to have a solution. I look forward to meeting everyone and settling in to make some new relationships.

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Cinnamon Girl


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Hi again, Mel, that`s excellent news!  The stats we have written at the bottom of our posts (in our `signature`) refer to details like our genotype, viral load, the type and duration of our treatment, our results through treatment.  Some people also like to include brief details of their previous treatment history.  It`s very helpful when we reply to someone`s posts to have some basic information written there, so that we don`t have to keep asking the same questions! 

Common abbreviations used are -`tx` for `treatment`, `vl` for `viral load`, `UND` for `(virus) undetected`, `EOT` for `end of treatment`, `SVR` for `sustained virological response`.   We have a full list of abbreviations on this thread here...

http://hepcfriends.activeboard.com/t51085702/forum-abbreviations/

If you`d like to write anything in your signature, just click on `Signature` in the `Profile` box of your `User Details`.  Hope that helps!

All the best of luck, keep us posted!  smile

 



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Dillo


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Good luck on your journey Mel

I have a friend with Hep C who has similar complaints with his spleen and another that says his CPPD was caused by it. They really don't know just how much is caused by it but the whole body is a system. When one part gets out of whack different things can happen.

Hang in there buddy. Hopefully things will get better when you get the dragon out of your system.



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GT 1a Started triple tx with Incivek, Pegasys, and Riba 2-6-2013. UND at 4,6,12,23,& 24 wks EOT 7-26-2013. Probably had Hep C for 20-30 years. Don't really know when I got it.

Mel48


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me too with the old age blankstare.  They found it by accident when I cut my hand and it wouldn't stop bleeding.  I had been going back and forth for awhile  trying to find why I felt so bad, army medicine can be really unhelpful, full of suckit up and quit whining so I went about a year being tired and so much random paiin and aches, I could have kissed him when he finally found the HepC



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Mel48


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Thank you Jill.  I am still learning to navigate the forum but I am excited I found ya'll again.  I lost the site and went on a hunt last night to get re-established.  I should know by today or first of next week.  If I don't make the study we will start treatment the old school way but I am hopeful the treatment will be the option we take.



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Mel48


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Thank you Alan I am learning to navigate the forum.  It seems the doctors try and minimize the symptoms which is so unhelpful to me.  I don't necessarily want them to do anything about the symptoms but I have spent so long having these symptoms with no explination that just acknowledging that they are in fact due to the hepc gives me relief.



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news


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Aches, pains, limited movement, joint pain and stiffness, bloated abdomen, swollen ankles and feet, I had it all. And no idea about Hep C until the doctor accidentally discovered it in a thorough physical. Glad to hear you are nearly in the trial. Hope that works out. Looking forward to hearing from you.

Alan



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Geno 1A  Started Pegasys/Ribavirin/Incivek Nov. 20, 2011 .  Completed July 28, 2012 (36 weeks). For a treatment history, see:  https://jshare.johnshopkins.edu/xythoswfs/webview/_xy-9921874_1

SVR on January 14, 2013!!
Cinnamon Girl


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Hi again Mel, welcome back!  Good to hear you`re applying to get into a trial and I hope you`ll be accepted.

As the others have said, Hep C can cause various symptoms in some people, whereas others have none at all and their diagnosis comes as a complete surprise.  It`s difficult for us to be able to tell you exactly what is making you feel this poorly, but I`m sure you`re doing the right thing for your health by moving forward with treatment for the Hep C.  Quite often people say that they feel a lot better in general once the virus is cleared from their systems.

Since I did my treatment I definitely have more energy and have lost most of the muscle and joint pains that I had been experiencing for years.

It`s natural to be feeling nervous and anxious, we all understand what it`s like.  Stay in touch, and best of luck with getting into the trial!  Let us know what happens. smile  ~ Jill



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
Biggyb


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Welcome Mel, my aches i thought were just age (probably was), only symtoms i ever had was the tiredness and flu-like feeling. Just went through 48 weeks hoping to be feelin better in the next few months. Keep us posted, Good Luck !!  ~Bob~

 



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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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Hey Mel,
Some people feel fine only to discover
They have liver cancer.
Some people feel achy and tired.
Hep C is a virus. Viruses react differently
With different people. Just like the flu,
Some get mildly sick-others get gravely ill.
I have joint pain but I am 54, always been active
And work standing on my feet.
Keep us posted on your results.
This forum has been an invaluable asset to me.

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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!
mallani


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Hi Mel,

Relax, you are not alone.  HepC can cause a variety of symptoms, although many people have none.  Everyone is tense and excited about starting treatment.  The success rate from treatment has never been higher, so you have every chance of eradicating the virus.  Keep us posted and we're here to answer any questions you may have.  All the best.  Cheers.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
Mel48


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I am waiting for the final ok to be part of a study through BAMC Ft. Sam Houston.  I am so new to everything and still learning so much about this illness.  I was diagnosed last Christmas, had a biopsy done in February and the final round of blood tests should be in in the next few days to verify that I am accepted in the study.  I am scared, excited and soooo tired :( - I have tried to find the symptoms of Hep C but all I can find is mild, not very noticeable effects but I am SICK!  I hurt all over especially my tummy area, my spleen, it is random and sometimes my joints and muscles hurt so much I want to cry.  Is this normal or am I experiencing something else besides the Hep C?  I have been so sick for the last year.  It took forever for them to find what was wrong and then when they did they acted as if it didn't really create any symptoms.  Am I the only one this is happening to or are they trying to minimize my issues so I don't get completely freaked out?  I would appreciate any feedback I can get, I am feeling pretty alone lately :(.

Thx Mel



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