Aa
Update on Amanda
Well looks like another round of treatment has come to a halt..After 16 weeks of Pegasys, Gamma IFN, Riba and Zadaxin, Amanda's viral load increased again.. We have stopped treatment and will look into a new option..again... We are emotionally drained and Amanda has experienced depression for the first time in her many treatment attempts. She will be turning 17 next week and is really scared that nothing is working for her...She is stage 4/cirrhosis so we really need a cure asap! we will be doing her 5th biopsy on March 10th...so we will see if maybe she has achieved some sort of healing through all of these attempts at killing the virus.
Your prayers have been a great inspiration to her...And we wish you all success in eradicaing the virus as well.
Love to all,
Jodi
Your prayers have been a great inspiration to her...And we wish you all success in eradicaing the virus as well.
Love to all,
Jodi
my prayers and and love are with you too...Amanda try to stay strong it's better for your immune system...fight against depression and don't let your thinking go there...keep your head high...i haven't had svr yet either and i know that feeling...just try not to let it drag you down...have as much fun as possible to get your mind off it...i believe it won't be too much longer before there is a much better medicine choice...the scientists are working very hard on alot of new ideas...and we always have that option of liver transplant too...
my faith is very strong in the Lord and i believe you and i are in his loving care...this is what is keeping me from depression...i know the Lord loves me and will take care of me no matter what happens...we will never leave his gentle loving arms and care...never. he's in control and will always do all out of love for us...he promises and he can not tell a lie...give him your tears and fear and let Him comfort you sweety,
love, sandi
my faith is very strong in the Lord and i believe you and i are in his loving care...this is what is keeping me from depression...i know the Lord loves me and will take care of me no matter what happens...we will never leave his gentle loving arms and care...never. he's in control and will always do all out of love for us...he promises and he can not tell a lie...give him your tears and fear and let Him comfort you sweety,
love, sandi
I am so very sorry to hear your news.
Amanda - You are such a brave and beautiful young woman. I truely hope you find a way to beat this disease. You have been an inspiration to me throught my 120 weeks total of tx.
I can only imagine the struggle that you are going through. Please don't give up the fight. You are a very courageous and strong family. Keep the faith. My prayers are with you.
Kim
Amanda - You are such a brave and beautiful young woman. I truely hope you find a way to beat this disease. You have been an inspiration to me throught my 120 weeks total of tx.
I can only imagine the struggle that you are going through. Please don't give up the fight. You are a very courageous and strong family. Keep the faith. My prayers are with you.
Kim
Thank you all again for your ongoing support and comfort..It really means a lot to us.
Eddye/Abby,
Just sent you email... Please know you are definitely not alone...and congrats on the recent engagement!!
Cuteus,
Yes, Great Adventure sounds great! Pick a day and time and we will be there! Thats a promise.
Mike,
What can I say? You have been one of Amandas biggest supporters through this mess and we truly love u for it.
Laurie, Kim, Susan, Chev and everyone else...thank you for your support.. it really does help.
We will keep everyone updated...
Email address is : ***@****
Love and prayers to all!
Eddye/Abby,
Just sent you email... Please know you are definitely not alone...and congrats on the recent engagement!!
Cuteus,
Yes, Great Adventure sounds great! Pick a day and time and we will be there! Thats a promise.
Mike,
What can I say? You have been one of Amandas biggest supporters through this mess and we truly love u for it.
Laurie, Kim, Susan, Chev and everyone else...thank you for your support.. it really does help.
We will keep everyone updated...
Email address is : ***@****
Love and prayers to all!
we can still make it to Great Adventure this summer, can't we? I read they ar e opening the fastest and tallest coaster ride....
I wish someone would take this hard to erradicate viral RNA and research its entrails to see what it is that is making it so resistant to ALL medications. It is so amazing to read so many attempting so many times with different meds and doses and the damn thing still remains intact! what are they made of?
I am praying that some scientific genius will finally come up with good answers and I am praying it will come soon for you, Amanda.
I wish someone would take this hard to erradicate viral RNA and research its entrails to see what it is that is making it so resistant to ALL medications. It is so amazing to read so many attempting so many times with different meds and doses and the damn thing still remains intact! what are they made of?
I am praying that some scientific genius will finally come up with good answers and I am praying it will come soon for you, Amanda.
I think it's time to rest and recuperate for a few months, and then look closely at upcoming trials with your doctor. The hope would be that several of the newer inhibitors being tested, along with Peg- Interferon will show a much greater effectiveness in getting non-responders, and slow responders to undetected levels. There is much promise out there right now with the newer inhibitor class of drugs, and it appears that Amanda will need something along these lines to get the desired result. I know that neither of you will lose any hope, and that setbacks like you are experiencing right now are only temporary. It takes a few weeks, or months, to regain strength, motivation, and the will to succeed, but it does return rather quickly.
It took me a total of 33 months of treatment , over two long, high dose tx regimes to finally get the SVR. Granted, Amanda's case is proving more difficult, but there still is great hope on the horizon. My idea of a potentially successful tx would involve high dosing of Peg-Intron (the more powerful of the pegs), very high dose ribavirin (see recent research article on Hiv and hepatitis website))combined with one of the new inhibitors currently in phase II testing. Several inhibitors are showing a 2 Log. or greater effect on viral load reduction alone, and combining them with the above may prove highly potent.
You will just need a doctor who is 'connected enough' to get you into the right protocol, and then who could allow you to customize the inf/riba portion to maximize odds of success.
Maybe they could do this due to Amanda's special circumstances.
I wish the both of you the very best in this quest. We all are here to provide whatever support you may need. Please keep us informed of Amanda's ongoing challenge.
It took me a total of 33 months of treatment , over two long, high dose tx regimes to finally get the SVR. Granted, Amanda's case is proving more difficult, but there still is great hope on the horizon. My idea of a potentially successful tx would involve high dosing of Peg-Intron (the more powerful of the pegs), very high dose ribavirin (see recent research article on Hiv and hepatitis website))combined with one of the new inhibitors currently in phase II testing. Several inhibitors are showing a 2 Log. or greater effect on viral load reduction alone, and combining them with the above may prove highly potent.
You will just need a doctor who is 'connected enough' to get you into the right protocol, and then who could allow you to customize the inf/riba portion to maximize odds of success.
Maybe they could do this due to Amanda's special circumstances.
I wish the both of you the very best in this quest. We all are here to provide whatever support you may need. Please keep us informed of Amanda's ongoing challenge.
I'm sorry to see that you and your daughter are having to go through this also. Has Abby had a biopsy to see what kind of liver damage if any? That would be the answer to maybe give her more time to wait for something better. If she is more advanced,,,,alot of 1's are clearing now with extended tx. I know that is not what she wants to hear because the initial 48 is tough but if it would finally get it if using extended,,,that would be worth it. For the fatigue she is experiencing,,,has she tried the sam e....Alot of people are using that for hep c symptoms and seems to help. I think the hardest part of this disease,,,,would be to watch our daughter/son going through it. My prayers are with you!
I continue to follow you and your daughters journey. You and she have remained in my thoughts and prayers. Amanda is truly blessed to have a Mom like you. Stay strong and keep the faith. A breakthrough will happen soon.
Regards,
Barry
Regards,
Barry
Just want to say again how sorry I am about Amanda's struggle. Please don't lose hope my friend. Mike
Jodi--Hope you don't mind if I tag onto your message..we need some advice.
Abby is 25. She was diagnosed @17 and went through 48 weeks of Pegasys/Ribaviron last year. She cleared early on, struggled and barely made it to the end, and then relapsed @ 3 months post-treatment. Her GI, a very well-respected specialist in Texas said to step back, forget about the HepC and come back in a year (see what the medical community had to say about re-treating). She's very tired again. Says she doesn't want to go through treatment again, unless there's something new. She's 1b...had low enzymes, but high viral load a year ago. New labwork pending.
We've distanced ourselves from current events in HepC. [Put blinders on?!?\] Any links on the subject of re-treating would be much appreciated! --E--
Abby is 25. She was diagnosed @17 and went through 48 weeks of Pegasys/Ribaviron last year. She cleared early on, struggled and barely made it to the end, and then relapsed @ 3 months post-treatment. Her GI, a very well-respected specialist in Texas said to step back, forget about the HepC and come back in a year (see what the medical community had to say about re-treating). She's very tired again. Says she doesn't want to go through treatment again, unless there's something new. She's 1b...had low enzymes, but high viral load a year ago. New labwork pending.
We've distanced ourselves from current events in HepC. [Put blinders on?!?\] Any links on the subject of re-treating would be much appreciated! --E--
Jodi--It's Abby's mom. We left this forum for a year or so. We left everything related to HepC. Abby's 48/48 didn't work. Very hard. You know. The last year she's been OK. Worked hard to get her post-treatment strength back. Did great with healthy living. She got engaged! She told me today that her fatigue was bad, like before she decided to do treatment. Her GI advised her (a year ago) to go "live"...come back in a year and see what the future of HepC treatment holds. Her hair is growing back...but her strength is going downhill. She won't do treatment again, unless there is something new...or unless he has changed his mind. She barely made it through the 48.
We haven't kept up with Amanda's story, but our heart and soul is with y'all. I'm not sure how to contact you directly anymore. We never really left...just decided to put blinders on for a bit! Our prayers are with you, Amanda and all of loved ones! ---E---
We haven't kept up with Amanda's story, but our heart and soul is with y'all. I'm not sure how to contact you directly anymore. We never really left...just decided to put blinders on for a bit! Our prayers are with you, Amanda and all of loved ones! ---E---
I am somewhat new here, and don't know your whole story, but my heart also breaks when I read this string.... I can't imagine the suffering you have gone through. I pray for your healing and strength in your journey - I will keep you in my prayers as well..
Sammy
Sammy
My dad always used to say to me, "Never lose hope." He was a real tough guy, had polio when he was fifteen and was told he'd never walk again. Yeah, right! Fast forward to my pop climbing Mt. Whitney, the highest mountain in the continental U.S., at the ripe old age of 65, looking like the spitting image of Ernest Hemingway. He used to do cross-country cycling before spandex was even invented.
I know your struggle is uphill, Amanda, and you are experiencing things no one ever should have to, especially at your age. I'm praying you're going to make it before too long. Keep on pushing, kiddo, and know that you have the love and support of an entire community that understands what you're going through.
I know your struggle is uphill, Amanda, and you are experiencing things no one ever should have to, especially at your age. I'm praying you're going to make it before too long. Keep on pushing, kiddo, and know that you have the love and support of an entire community that understands what you're going through.
I am so sorry to hear of your news. Amanda, you are so brave.
I'm praying for you.
Susan
I'm praying for you.
Susan
I'm truely sorry. I know that going through just the diagnosis in my early 20s was immeasurably hard. I don't think liver disease & repeated treatment is something that any 17 year old should have to face, ever. Amanda & Travelmo, you're in my thoughts.
I'm so sorry to hear about your daughter's situation. God bless you both, I will keep you in my prayers. Stay strong.
I hate to read this and so sorry. Both of you are in thoughts and prayers. I hope on the 5th you see much reversal and that indeed the meds were working in another way!
Jodi & Amanda:
Always checking to see if you've posted, especially since in your last post Amanda's viral load had dropped so significantly. There doesn't seem to be any rhyme or reason, which I'm sure is very frustrating.
I don't know what else to say, but good luck and keep pushing forward like you've been doing. Amanda, you have more strength than I could ever imagine having. It's hard to not get depressed sometimes, but don't let it overwhelm you. Keep thinking positive like you have been; it's much healthier for you.
Take care and thanks again for taking the time to update all of us here.
Laurie
Always checking to see if you've posted, especially since in your last post Amanda's viral load had dropped so significantly. There doesn't seem to be any rhyme or reason, which I'm sure is very frustrating.
I don't know what else to say, but good luck and keep pushing forward like you've been doing. Amanda, you have more strength than I could ever imagine having. It's hard to not get depressed sometimes, but don't let it overwhelm you. Keep thinking positive like you have been; it's much healthier for you.
Take care and thanks again for taking the time to update all of us here.
Laurie
Hi Jodi, Hello Amanda,
I go see my Gastro next week! Several tries at Tx without success and the liver gets worse as well. I may be getting to the point of looking at lists myself.
So I keep on looking! Amanda, I understand how easy it is to get depressed when it seems like you keep trying and things go in reverse. All I can say is hang tough and from what we;ve seen of you over the time we've shared here I can't see you staying down for too long at a time. Every so often I look and see myself feeling all sorry for poor old me and instead of going Oh Yeah, I can't help giggling at myself. Never been able to stay that seriopus for any length of time! Things are rough and things are scary but you've shown us strength beyond your years! We're here for ya!
Kim
I go see my Gastro next week! Several tries at Tx without success and the liver gets worse as well. I may be getting to the point of looking at lists myself.
So I keep on looking! Amanda, I understand how easy it is to get depressed when it seems like you keep trying and things go in reverse. All I can say is hang tough and from what we;ve seen of you over the time we've shared here I can't see you staying down for too long at a time. Every so often I look and see myself feeling all sorry for poor old me and instead of going Oh Yeah, I can't help giggling at myself. Never been able to stay that seriopus for any length of time! Things are rough and things are scary but you've shown us strength beyond your years! We're here for ya!
Kim
As deep as my faith is, I admit that I struggle when I read about the suffering of someone like Amanda. It seems so unfair and I know it must bring you immense pain and worry. Yet faith is all we have sometimes, so we have to place our trust in Him. I know that there are many people on this board who will remember you, Amanda and the rest of your family in their prayers tonight. I will, too.
Sending all of you a (((BIG HUG))).
Susan
Sending all of you a (((BIG HUG))).
Susan
Thanks so much for the update. I know you don't actually "know" me as I've never wrote directly to you, but I have followed your story. You two have been a major source of encouragement to me on my bad days. I've thought of you guys a lot. Sorry to hear your progress has another detour. Please know that my prayers for both you and Amanda continue. Please tell Amanda to hang in there. I know she is tired! I KNOW!! But God does have a plan if she only makes herself available. By the way ... I broke to the depression finally and tried Paxil. It really did do wonders for me. God bless! Pattie
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