Author Topic: Yeah its time to pay the piper (Read 1221 times)

nsauce · « **on:** December 13, 2011, 11:33:27 PM »

I was diagnosed in 2004, and have never been treated. Long story short, I was having horrible fatigue, brain fog, extreme irritability etc. So after many hours scouring the internet, the only thing I could come up with as the cause of my symptoms was my untreated hep c. I am fortunate to live in Houston, 10 minutes from the Texas Medical Center, which claims to be the largest medical center in the world. Being that I was laid off my job in July, I figured I'd try to get in one of the clinical trials at Baylor College of Medicine. I went through 3 days of testing, bloodwork, paperwork etc. Today I got a phone call that said I have the ONE genotype that qualifies me to take part in Novartis' DEB025 (Alisporivir) random double-blind placebo controlled trial. The trial med will be in addition to the standard Peginterferon and Ribavirin. If I am issued the placebo, according to the nurse practitioner, it would be unethical to keep me on it full term. So if my virus does not respond properly, then at 24 weeks or sooner they will issue me the actual Alisporivir. So I still need a liver biopsy and i dont even know what other testing and I should be ready to start. My biggest concerns are that, within the past 5 years, I was diagnosed with GAD and clinical depression, and I cannot tolerate SSRI's . The nice thing is that my treatment will not cost me a penny, in fact they are going to pay ME to take part in the treatment .
So here I am. Not really knowing what to expect, nervous, scared. . .I have a wonderful fiance, but other than that I have nobody at all to talk to. I have no friends, so looks like I may be annoying you presumably fine folks here at HCVsupport . I guess that's all for now . . .

DougV · « **Reply #1 on:** December 14, 2011, 12:14:22 AM »

It is a great center and a darn good medical school. I am biased, live in Florida but am from that neck of the woods.

How is your GAD and depression now? And are you taking meds for them? Some like MAOs interact with all kind of things. It is really important researchers are aware of drugs you take and conditions. Ifn/Riba can cause anxiety and depression. Please be careful.

Lot us are or have been in the same position you are in not having anyone to talk with this about. If any of us can help you, you can bet we will.

Doug

Viper · « **Reply #2 on:** December 14, 2011, 12:03:25 PM »

Quote from: nsauce on December 13, 2011, 11:33:27 PM

So here I am. Not really knowing what to expect, nervous, scared. . .I have a wonderful fiance, but other than that I have nobody at all to talk to. I have no friends, so looks like I may be annoying you presumably fine folks here at HCVsupport . I guess that's all for now . . .

We have all been were your are and completely understand. As to having nobody to talk to and having no friends thats ABSOLUTELY NOT TRUE!... YOU HAVE US!

We are always here for you to provide you with the knowledge, support and encouragement you need.... after all its our site's main mission and that of each and every member here!

As to "Baylor", you are in great hands. They are outstanding!

Viper

banarep · « **Reply #3 on:** December 14, 2011, 12:03:33 PM »

I did my last clinical trial through Baylor Dallas, and was very impressed with the whole set up. Good luck to you and congratulations for getting into a trial.

greyrocker · « **Reply #4 on:** December 14, 2011, 12:21:07 PM »

Quote from: nsauce on December 13, 2011, 11:33:27 PM

....so looks like I may be annoying you presumably fine folks here at HCVsupport . I guess that's all for now . . .

Annoy banarep all you want, nsauce. He likes it, he really really likes it!

Seriously, ditto to what these guys said. We're here for you, so don't be shy! This forum helped me tremendously back when I started treatment in June '09 and throughout.

Again, welcome!

greyrocker

banarep · « **Reply #5 on:** December 14, 2011, 03:24:40 PM »

Quote

Annoy banarep all you want, nsauce. He likes it, he really really likes it!

maybe I does, maybe I doesn't

sunny2day · « **Reply #6 on:** December 14, 2011, 04:13:11 PM »

Quote from: nsauce on December 13, 2011, 11:33:27 PM

I was diagnosed in 2004, and have never been treated. Long story short, I was having horrible fatigue, brain fog, extreme irritability etc. So after many hours scouring the internet, the only thing I could come up with as the cause of my symptoms was my untreated hep c. I am fortunate to live in Houston, 10 minutes from the Texas Medical Center, which claims to be the largest medical center in the world. Being that I was laid off my job in July, I figured I'd try to get in one of the clinical trials at Baylor College of Medicine. I went through 3 days of testing, bloodwork, paperwork etc. Today I got a phone call that said I have the ONE genotype that qualifies me to take part in Novartis' DEB025 (Alisporivir) random double-blind placebo controlled trial. The trial med will be in addition to the standard Peginterferon and Ribavirin. If I am issued the placebo, according to the nurse practitioner, it would be unethical to keep me on it full term. So if my virus does not respond properly, then at 24 weeks or sooner they will issue me the actual Alisporivir. So I still need a liver biopsy and i dont even know what other testing and I should be ready to start. My biggest concerns are that, within the past 5 years, I was diagnosed with GAD and clinical depression, and I cannot tolerate SSRI's . The nice thing is that my treatment will not cost me a penny, in fact they are going to pay ME to take part in the treatment .
So here I am. Not really knowing what to expect, nervous, scared. . .I have a wonderful fiance, but other than that I have nobody at all to talk to. I have no friends, so looks like I may be annoying you presumably fine folks here at HCVsupport . I guess that's all for now . . .

Hello and welcome nsauce! I'm glad you found this site, you're no longer alone!!

For what it's worth, I too have anxiety issues (PTSD) and can't tolerate SSRIs. So far I find that the anxiety med I take at bedtime for sleep is getting me through this just fine. I'm no more depressed than I ever was (am mourning several deaths) so just want to put it out there that while depression may get worse for some it doesn't get worse for all. Any and all coping strategies you currently use may see you through treatment just fine. Doctors I spoke with prior to treatment tried to throw a scare into me about the side effects, got me stressed and upset for nothing.

The clinical trial at Baylor sounds well designed ~ sounds like you'll be in good hands! Good luck and try not to worry too much. Whatever comes up, you'll deal with it. Everything is gonna be alright!

nsauce · « **Reply #7 on:** December 16, 2011, 04:52:57 PM »

No I am not currently taking prescribed medications for my GAD or depression. I do take xanax from time to time and it works beautifully. Unfortunately I can't get them consistently because I am gloriously unemployed. Hopefully the Baylor clinic will prescribe me some comfort meds .

ProfStudent · « **Reply #8 on:** December 19, 2011, 02:19:40 PM »

Hi Nsauce

I'm VERY proud of you for doing this...posting/reading on this site. And all these people are here to offer their wisdom, share their experiences, etc with you.
I love you so I will always be concerned about you (comes with the ovaries, I think) but my heart is lifted a bit in hopes that you will continue to post here (and I will go to "my section") and read others accounts.

Thank you all for the support you give.

nsauce · « **Reply #9 on:** December 19, 2011, 02:54:10 PM »

nsauce · « **Reply #10 on:** December 27, 2011, 04:34:18 PM »

Yay, ProfStudent is the love of my life. She came down to Houston from the Dallas area to be with me during my biopsy this morning. All went well with that, it kinda hurts where they brutally stabbed me lol . BUT this is the last step in my intake testing. i should be starting my triple therapy next week. And yes I'm nervous about it, but it needs to be done . Will keep y'all updated.

greyrocker · « **Reply #11 on:** December 27, 2011, 04:50:47 PM »

Quote from: nsauce on December 27, 2011, 04:34:18 PM

it kinda hurts where they brutally stabbed me lol .

Nsauce, good sense of humor, that will serve you well. Nice to see you have such great support too!

Fight to win!

greyrocker

banarep · « **Reply #12 on:** December 27, 2011, 05:43:13 PM »

nsauce,

the pain goes away quickly. let us know how it all goes. and you are quite lucky to have such a sidekick at profstudent. many of us can tell you how important it is to have someone be there for you.

looking forward to reading your posts.

BR

cryermama · « **Reply #13 on:** December 28, 2011, 11:31:17 AM »

nsauce, I am originally from Texas (Lufkin) and I can tell you that Baylor is an awesome hospital! Congratulations on getting this going. I too am starting tx. (Jan2) and there are many others here that have just started or are starting in the near future. We will travel this road together and kick that

butt! Good luck and if you need anything, this is the site to come to. The people are wonderful here!

Cheryl/Cryermama

nsauce · « **Reply #14 on:** December 28, 2011, 12:21:26 PM »

Awesome . I will most certainly be posting updates here. I am trying to get a job right now, as I think it would be better for me to be working, even if I'm feeling like a** at least I wont be sitting around the house stewing in misery. It is just hard for me to get a job because I have 4 felony convictions but I must try .

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