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Posted 4/24/2011 4:35 PM (GMT 0)
TY very much Pink!

Connie - I did just that Friday, and asked about the antidepressant regime to start prior to the Bo, and was told that we should wait until it becomes a real problem. That with the drug being so new that they want to keep it from any interference so as to allow the best chance of cure rate the first time along.
I guess he's betting on the fact that I won't come across the parking lot with a shotgun. I told my PA that I won't be asking for the AD's after treatment starts, because if at all possible I only want to have to go through this once, and I know that the Dr. I have will shut down treatments for it. I have hired a caregiver to help me for the next year, and to monitor my changes in behavior. If she in fact see's that I am becoming manic - she will report it to the Dr.
I have never taken pain well as just a "sit and endure" type of person, and I have a very high tolerance for it - but I have gotten aggressively violent in the past from it, and I am going to ask the Dr. to reconsider the AD path based on past history.
Posted 4/24/2011 5:01 PM (GMT 0)
Our forum site is so excellent, as we get the collective knowledge of many folks who are battling the same disease process...thanks to all who participate! And who listen to the ranting and raving we need to do from time to time! Carol
Posted 4/24/2011 6:11 PM (GMT 0)

David sent me an excellent writeup about Vertex's Talaprevir today.  It states that the FDA panel will review Boceprevir on Wed. and Telaprevir on Thurs. of this coming week.  It has taken a very long time to get to this point, but it certainly looks very promising:

http://www.boston.com/business/healthcare/articles/2011/04/24/cambridge_firm_spent_decades_and_billions_on_a_pill_to_treat_hepatitis_c/

Jim, you seem like a very smart guy who knows what's best for you.  I'm happy to hear that you are "on the case" regarding possible problems.

Hugs,

Connie


Posted 4/24/2011 7:14 PM (GMT 0)
Thank You both. That article amazes me - seems that I am where I am supposed to be. The doors are opening, as I asked in prayer, now to walk through them.
I will get on other threads when I think that I can offer something of value, and not misinformation. I wouldn't want to hurt anybody here with bad info., besides the fact that I am just above worm on it anyway.
I tend to make light of things that scare me - always have, please don't think that should I make a joke that I am being disrespectful. I joke with the ones I like, the others know quickly when I don't. This is natural for me - not practiced...LOL!
I like Rick (timeless) and his website. That's a real good idea - and leaving the bucket list empty I thought was a good touch. I was impressed that he could have an understanding of self that he has. I will strive to be as timeless myself. Great outlook!
Jim
Posted 4/24/2011 7:23 PM (GMT 0)

Jim, without humor we wouldn't be able to handle this horrible disease.  That's why we allow (encourage?) the Hepatitis thread to get as wild and wooly as it does.  That trio of Rick, David, and Mick keeps us all laughing.  Perhaps with you, it will become a quad?

Seriously, we would love to hear about your experience with the new treatment and wish you the very best with it!

Hugs,

Connie

Posted 4/24/2011 7:56 PM (GMT 0)
Well - that's good to know - I know I'll have to find another outlet than my girlfriend or I will drive her crazy with it all the time.
I'm an old southern country boy, with a "strange to most" point of view. I have spent most of my life laughing at people, and the things that we do. Most of us should've been required to wear a helmet from puberty to protect what little active grey brain matter that were born with. I didn't figure that there was any cause for me to wear one, that it was indeed too late. Although I never did jump a moving car from end to end...always wanted to try that one. My legs are too long, and the inevitable belly flop behind the car just seemed a little more than I was willing to experience.
BUCKET LIST!
Posted 4/24/2011 8:18 PM (GMT 0)

PH, maybe you and Timeless (Rick) are distant cousins!

Hugs,

Connie

Posted 4/24/2011 8:39 PM (GMT 0)
Maybe - grand dad did get around....
Posted 4/25/2011 4:54 AM (GMT 0)
Jim,

Hello, and welcome to the forum! I see you have definitely met "the gang"!! I am also a caregiver. My husband has HepC and cirrhosis. He is 1a as well and was doing the interferon and ribavarin treatments, but had to quit because it caused some pretty nasty psychosis side effects with him. So, he's being monitored carefully with blood work every few months, scans, etc. He is on the transplant list, although his MELD score is really low.

As Connie said, it's very important that you stay away from "heavy" proteins as much as you can because the liver does not break down protein as well as when it's a healthy liver. Low sodium, all that jazz, too!

It may be helpful if you have your significant other go with you to doctor's appointments as much as possible, because there is alot of information thrown at you, and even when you are not having issues with mental confusion, it's alot to keep up with. Make a notebook, and put copies of all of your labwork, etc in it.

If your hep doc is wanting to wait for the new treatment, that probably is a good thing! But, if you are not comfortable with this doc, always good to ask for 2nd opinion.

I am so sorry you are having to deal with this, but am glad you found us!

Hang in there!
Mer
Posted 4/25/2011 6:08 AM (GMT 0)
Thanks Mer,
I am glad to be able to talk with others that don't look at me as bad meat.
Posted 4/25/2011 6:16 AM (GMT 0)
Mer wouldn't be short for Merryn would it?
Posted 4/26/2011 2:25 AM (GMT 0)
Nah, I am not original when it came up with using a screen name, just a southern girl with a southern name, so I just used my initials. LOL

Mer
Posted 4/26/2011 3:18 AM (GMT 0)
Rick,

My grandfather had an old billy goat one time that would eat a tin can, so not surprised at all about the nails!

Mer

 

Posted 4/26/2011 5:55 AM (GMT 0)
Rick - you know my ex-wife??
Posted 4/26/2011 6:01 AM (GMT 0)
yeah yeah yeah - I know - Everybody knew your ex-wife.

Mer, I have a friend in Taz that I talk with on a couple other forums named Merryn, that has migranes, and other symptoms. Was just wondering - but it's always nice to meet another southern girl.
Posted 4/26/2011 9:54 AM (GMT 0)
Now u guys went and done it.....goats are cool people...I owned 51...at the time I got divorced ten years ago....milked them...ate the. Meat...much like deer meat...made cheese and sold cheese and meat...those goats made a nice living for us...they ate much of the food leftpvers from the house but we didn't let them eat paper etc....everything else went into the compost pile.....however billy goats are very nasty creatures and well...can make a girl blush with their antics...our billy goat thought I was his girl...he would spit like a camel and then curl his lips.....goats also....billy goats...are just naughty .....anyways I loved my goats ....
Posted 4/26/2011 9:27 PM (GMT 0)
Hello Jim

My bf was on the trial meds that you are waiting to be released in june. He started taking them for two months and then went back on regular treatment which he is still doing now. He had 1a just like you and in that two months he was clear and is still clear from the hepc. I can tell that the meds made him mean as a rattle snake. He had no will to do any thing take showers any thing that envolved energy was out of the question. He is still doing treatment and will not be done for another nine months but right now every thing is looking good. Be prepared the meds are nothing nice for you or for your loved ones. Good luck and I hope you have the same success.

Posted 4/26/2011 9:36 PM (GMT 0)
Thank You Steph66,
That is what I wanted to know - problem is I am mean as a snake now. I can't imagine no shower though. Got to wash that butt.
Good luck to you and your bf, I hope he makes it.
Sue took my car keys - I'll hide her pistol. :-)
Posted 10/19/2011 10:09 PM (GMT 0)
Hello again all,
I was deemed not able to take the June releases due to my already having skin conditions. I have been transferred (my case) to VA. Mason in Seattle.

There is a new treatment that is being released for study called Quantum that I am being considered for starting next month. This is designed for 1a's that cannot take the old treatments / and cannot expect more than a 32% chance of recovery.

I have taken all the prelim testing, and the only thing out of norm is my viral load being high - so I am very high on the list. I will keep you posted as I go along, everyone keep your fingers crossed. I hope nothing falls off.
Posted 10/19/2011 10:16 PM (GMT 0)
PinHead,


Glad to hear from Seattle again! And glad to hear that you are going to be treated for the Hep C.

My partner, Mike, has had Hep C since 1970s. He failed the Interferon/Ribavarin treatment in 2003. Now he has had a transplant and his viral load it high again. He will likely be offered treatment again, though he is not a good candidate for Interferon based treatments.

We will be very anxious to hear how your treatment progresses, once they decide if you will be in the Quantum Study...how it works, how you are feeling, etc etc.

Hopefully you will be a sustained responder...someone has to be in the 32%!!!!

Carol
Posted 10/20/2011 12:02 AM (GMT 0)

Pinhead, good to see you posting!  Please do keep us updated as to treatment and how you are doing.

Hugs,

Connie

Posted 10/20/2011 12:32 AM (GMT 0)
I see that you are in a good spot too Connie!
I will, and I saw not being treated was only going to lead to my World Conspiracy Theories. I have been rather depressed about the YEAR without treatment for this. VA. Mason is like the Mayo of the west coast.
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