Hep C Discussion Forum

Loopy Lisa · Guru

RE: Well....The News is in, and its not good.....

Bills · Guru

The Gilead Topic,

I'm all for telling them where to go. Since last year they have done nothing to answer for their greed. I guess they never will. I gets to me every time I hear it. But we do see that those who do that cure get cured and I will have to take the drug when it's out for us with cirrhosis. I feel like I'm selling out but I'm a 3 time relapse. The scary thing is how much resistance do I have? I'm not doing anything till it's in a package and says 99% cured. I just try to keep it off my mind and one day it will be here.

Best wishes to all who are waiting

Bills

Tig · Admin

Exactly! I'm sadly pleased to have the opportunity to benefit from their research and drug therapies, but they potentially could've saved the lives of hundreds of thousands of individuals globally had they made some ethical decisions years ago. Instead they chose to place profits ahead of patients and the patients suffered, they continue to suffer. If I have a chance to choose their competitors medication, provided everything is equal, I will. People and companies get away with this behavior because we ignore it or have little we can do. If my only option is to show disgust for their actions then that's what I'll do. At least it's something. To do nothing seems improper as well.

Bills · Guru

Hi Ranelle,

Ouch I know how you feel, and I see you realize it's not you it's the drugs that failed. I look forward to the news on the street new drugs in 2014, I'm so tempted to do another trial but I had so much of that poison I don't think another risk is worth it ( for me ) . I wish I could wake up and it would be here. Treatment itself was easier with this support. Having this forum now is a life saver. I wouldn't have made it through this without it. We will have our day and it will be sweeter. Hope you feel better being off TX and good luck

Bills

Loopy Lisa · Guru

Hi Tig,

In the ideal world all drugs would be available across the globe and more would be done for infectious diseases per se. But most of us treatment niave and non-responders are looking at these drugs like they are the holy grail.

I can say I was really annoyed when Gilead stopped their collaboration for profit when the cure rates were 90%. But most likely in the future there will be off label perscriptions with this combo.

I guess we are the lucky ones in some ways. This disease was once considered along the lines of H.I.V, an uncurable chronic disease that may strike or may not. I can say that the people who work hard to find the cures have my utter respect, just the business and share holders suck big time!

We all have hope whether we respond to interferon or not, because science has learnt more about the RNA and how to intercept it. We are very lucky that companies like Gilead exist, without them we would have been told like people in the 90s "Enjoy your life, look after yourself, and that's all you can do!" I guess what I m trying to say is, yep, the profit and greed is awful, but I m grateful to have access to their medication in the future!

x

Tig · Admin

Lisa it's unfortunate that "We" as Hepatitis C patients can't allow ourselves the ability to boycott any corporation (read: Gilead) that chooses to place profits above everything else. Recovery and the eradication of this disease is paramount in our lives right now. That alone removes that option from our list of choices if we choose to be serious about our decision. But it will NEVER remove from my memory, the name Gilead or anyone else, that chooses to follow such irresponsible corporate decision making processes. If and when I can make a decision to utilize another product from any other company that has proven to be medically and ethically responsible for the care of any or all patients needing their help, I will show corporations that prove otherwise the way out the door! I hope you all will consider the same. Thanks for listening.

Loopy Lisa · Guru

Sorry to read that you were pulled off. I think that Gilead is greedy and just wants the honour of curing you! Try not to lose heart, you have not long before the next round of drugs are there to cure you. Hoping you don't feel too blue....x

Dillo · Senior Member

Sorry I'm late to this and sorry the treatment didn't work for you. We had talked about it and it does seem like Malcolm said ...your body doesn't react well to the interferon. Better to know now and not have to go through the other 36 weeks of treatment making you weaker only to see the same result. Like you said yourself you are strong, you have shown everyone here you are with all you have done while on Incivek. Your young and the virus most likely hasn't had time to do a lot of damage to your liver.

Rest up ..read up on the new treatments and you will be here to fight the Dragon another day!

2oldman · Member

I sure hope a new treatment is on the way.. I've been waiting for 13 years and my feet are about ready to fall off.

tomyboy · Senior Member

Hi Randelle,

Such inspiration from so many people and you are beginning to be more positive. Lots of us have experienced set backs but have "bounced back" and you are on that road. New treatments right around corner. I am pulling for all of you. Wishing you the best. Keep your head up!!!1 biggrin

Terry · Senior Member

Hi Ranelle Hang in there Girl and know we are all pulling for you ! Every day I get an email from google alert talking about the big push on new drugs and treatments on the way. Some of us are on trials right now using what we hope will be the start of something great for all of us.

Caryn · Senior Member

Hi Ranelle,

The same thing happened to me. I have been off of treatment since March. I am going to my doctor in December to discuss treatment options for early next year. From what I understand he plans on treating me with interferon and sofosbuvir. That is all that I know at this point, but clearly there will soon be options coming for those of us who failed treatment with incivek. Hang in there....It's right around the corner!!

britlitkaren · Senior Member

I was sad to hear this. I know we put so much energy into getting ready and doing everything just right. I think we have all lived with the dread of that phone call.
Stay strong as you can. You know what to do.. you're a nurse. But I lurk a lot and just wanted you to know that my heart is with you. The odds are good with the new drugs.
I had a friend on her 3rd round of tx and just got the all clear this week with the new drugs in clinical trial. It's possible.
hugs, Karen:)

Cinnamon Girl · Guru

You`ve got a great attitude and a strong spirit, Ranelle, and it`s good to hear you`re thinking so positively. You`re young and you`ve already shown how fit and determined you are when you ran that race not so long ago...you succeeded then and you`ll succeed again on the next round of tx. In the meantime, take good care of yourself..and keep in touch!

nurschic · Senior Member

Thank you all!!! Yesterday I had a mini melt down, but lifted myself right back up.....crying doesnt fix anything. I was not the one that failed, it was the meds that did. I perpared myself for this, as I refused to believe that I was UND. I started talking to my Dr at week 8 about trials and if he would help me get into them. Guess it pays off to always be thinging and preparing for the worse, but wishing for the the best.

New meds are right aroud the corner.....that gives me plenty of time to heal from this treatment and get myself mentally ready for the next. Im going to be everyones cheerleader on here as you all continue your journey to UND and SVR.

ucbgal · Senior Member

ranelle,

i'm at a loss for words. please take a deep breathe,have a good crying session,but keep on believing! the new drugs are to be approved in the near future and have less sx.

while getting to know you through this forum i was so inspired by your stamina,courage and survival ability. i know your family and friends must be so proud of you!

sandy,ucb gal

p.s. dustbear recommended the book "the monk who sold his ferrari" by robin s. sharma.it's quite uplifting and is inspirational

mallani · Guru

Hi Ranelle,

Very sorry to hear the news. I know how you feel, having that happen 3 times before. It really wasn't surprising, considering your 4 week VL and the fact that your Hb barely dropped by 8 weeks. You obviously are not interferon sensitive. I would want to know how my liver is, by a biopsy or Fibroscan. However, on a brighter note, you won't have long to wait. Being in the USA, you are extremely lucky and will be able to get on the new meds in a couple of years. As you can't have an antiprotease, the Sofosbuvir/ daclatasvir or Ledispavir would be the one I'd choose. Your turn will come. Get yourself fit and healthy and stay off the booze! It's just a temporary setback. Cheers.

Biggyb · Guru

Very very sorry Ranelle, it just wasn't in the cards. We are all gambling with this treatment. Some win, some lose. But one day everyone will beat this thing. ~Bob

JIme · Guru

Rest up, recover, and stay as healthy as you can and be ready for the next round.

There are better drugs out there and you will end up cleared sooner than you think.

After taking a much needed break read up on all the new stuff that's out there. There are a lot of new drugs. You will be fine. God bless you.

If you could do Incivek you can do anything.

edmed · Veteran Member

Hi Ranelle, Im so sorry also. Its been almost two week since i got the bad new and Yes i also felt the same way and was ready to throw in the towel. now, get a lot of hope from reading what other forum member posting . That some day we dream of [UND] is just around the corner and just as I'm ready now I'll be just as ready on that day. Good luck and keep your spirit up.

HR · Senior Member

Hi Ranelle,

I am very sorry to hear this news. I could only imagine what it would be like to go through this treatment to find out it didn't work. My heart goes out to you.

One thing to keep in mind is that shorter treatments are on the way. I'm thinking late 2014. These treatments are very,very user friendly and will be for 8-12 weeks depending on how quick you go UND.

Take care

Tig · Admin

Sorry you got that information Ranelle. But the words of so many others hold true. There are sone excellent treatment programs on the near horizon and you will get on one when your time is right. Get your strength back, enjoy not having to hear all those alarms and prepare for the future treatments!

hepCFREEwanab · Veteran Member

Hi Renelle,

When my husband Angelo, was told by his Dr. that the treatment needed to be stopped because of the Anemia, Edema, HE, he was so disappointed! He was fine before starting the TX, just a little tired and now he can't even get out of bed because his Hemoglobins went from 15 pre Tx to 8.5 ! He never took a pill in his life, now even after stopping the TX he takes 10 pills a day!

He had struggled through 7 weeks of those awaful meds, achieved UND and yet it just came to a halt! Now back to square ONE!!!!

He was also told that he should wait a while before considering another TX!

It seems that it is very easy for a Doctor to first to tell someone that the TX is a must, that there is no other alternative otherwise it is bad news, then ...sorry but you need to stop because your body can't take it. Hello, based on the preliminary extensive test results, could he NOt see that maybe the TX would be too much for someone in my husband's condition?

Sorry to vent, but I just wanted to tell you that you are not alone, that other people have been told to WAIT.....

The real problem I see, is that some people can and some can't wait!

I hope everything works out for you and that you will be HEP C FREE!

Matt Chris · Guru

Hello Ranelle

Sorry to read about your latest lab results, I felt your disappoint and loneliness as when it happened to me.

It's ok to feel disappointment, this is the time to cry. So let out your anguish and un-repress those emotions that we all feel at these times . Once released and dealt with you can recover and move on. The black hole of depression is not a place to stay a long time at.

At your age and health of your Liver you will live to fight another day and win the battle. You have the will and support of your family and many happy years to yet to come in your future.

The future for all HepC patients have never been better or brighter, let's be there together.

Matt

hrsetrdr · Guru

Ranelle,

So sorry to hear, your disappointment is understood and felt here. You will defeat the hep C eventually, with one of the very promising treatments out there on the horizon. Best of luck, keep looking at life one-day(or one minute) at a time, whatever it takes.

ios9 · Senior Member

Hi Nurschic smile

So sorry about this sad news, but please remember good short treatments are coming soon, so keep hope and try to afford a better time to your liver (and yourself) by keeping a good mental, and far from alcool, just prepare yourself for the next good Treatment you will have next year or so.

You'r not alone, we are all on the same boat :)

Warmest hugs,

Do

Cinnamon Girl · Guru

Ranelle, I`m so very sorry to hear this, I really feel for you, girl. This must be a huge shock for you, so give yourself some time to adjust and recover.

You`ve been a real trooper and have done the best you could possibly do, and you`re right, you are strong and you will win in the end! Your day will come, keep believing in that!

Take care and nurture yourself, and remember we`re here for you. Sending big hugs, Jill x

Kellie · Senior Member

Hi Ranelle, I'm sorry the meds didn't work as planned. I understand when you say your heart is breaking...please don't lose heart. There are wonderful easy treatments right around the block. 2 years or less.

Good that you won't have to be on the interferon and riba anymore. Don't get me wrong, I'm grateful but this treatment sx sucks. The new treatments will work quickly and won't be yucky. Take this time to build your body and mind back up. Everything is ok and working out just the way it should. I'm sorry it didn't work out the way you and us wanted though.

k

nurschic · Senior Member

Just got a call from my GI Dr and my viral load came in. It is actully higher then my 4 week VL, it is currently 805,000. So, I failed treatment, go figure, its just my luck. So, I have been told to stop all my meds. My Liver enzymes are also the highest that it has ever been. My Dr wants to check it again in a month and see if it comes down since I will be off all the meds.

My heart is broken and I feel so lost right now. I want to cry! My Dr doesnt want me to go into a trial just yet cause I just got off the Incivek treatment. He wants to give it awhile.....if not a year before he wants to try anything else.

I am strong and can get thru this.....with each failure, success is that much sweeter!

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~Bob~

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