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My test results are in - NM283 study patient
The virus is undetectable again. Neither the doctor nor the nurse have a good explanation. While this is good news, I'm having trouble getting real positive about it. I just know that as soon as I stop taking the medicine, it will be back. They are going to be testing me every four weeks for 6 months after I stop the meds so they will know right away probably. I still have 12 weeks on medication.
I'm so depressed about this entire ordeal. I was doing so well keeping my chin up and now I have lost hope. At least the babies are negative and, if I die an early death, I will have spent a lot of quality time with them.
I'm so depressed about this entire ordeal. I was doing so well keeping my chin up and now I have lost hope. At least the babies are negative and, if I die an early death, I will have spent a lot of quality time with them.
Hey Girl:
Sorry this stuff is hitting you so hard right now. I hope it starts improving for you quickly. Maybe this time it will be forever with no relapse. Hang in there you are in our thoughts. Hug the babies for us:) Dale
Sorry this stuff is hitting you so hard right now. I hope it starts improving for you quickly. Maybe this time it will be forever with no relapse. Hang in there you are in our thoughts. Hug the babies for us:) Dale
I am glad you are UND again, and am thinking too that the positive may have been a misread. WHat concerns me is that you are so fatalistic here (saying your babies will be without a mommy). I am not sure if that is drama or you really think that. I remember a post some weeks ago where you told a new person tht only a biopsy would tell them when they were going to die. I didn't address it at the time - I think Can-do did - but thought it was odd and that maybe you misspoke. Now I am not sure.
Are you Cirrhotic? I don't remember that you are, but I have had a hard time keeping up. Hepatitis C is a chronic disease and in most cases is not a killer. It may affect QOL but probably is not a death sentence. You must be young, with babies. I am 58 and probably had hepatitis C since about 1970 - were you born yet? (not trying to pull the age card here, just point out that you will have a long life).
Here's to your health and happiness, alady. All we can do is what we can do.
frijole
Are you Cirrhotic? I don't remember that you are, but I have had a hard time keeping up. Hepatitis C is a chronic disease and in most cases is not a killer. It may affect QOL but probably is not a death sentence. You must be young, with babies. I am 58 and probably had hepatitis C since about 1970 - were you born yet? (not trying to pull the age card here, just point out that you will have a long life).
Here's to your health and happiness, alady. All we can do is what we can do.
frijole
To help answer your one question about what is NM283. It is a polymerase inhibitor and is a new drug that is going through trials right now. There are basically 2 types of "new drugs" in trials. polymerase inhibitors and protease inhibitors, they both deal with stopping the mechanisms that allow the virus to replicate. Both have been having success, although there is a concern that the virus can mutate and become resistant to the drugs. The trial that alady is on is using it in combination with pegylated interferon and a new trial is coming out that is going to use it in combo with pegylated interferon and ribavarin. They feel this will give it the best chance of not allowing it to mutate and allow people to achieve the holy grail SVR. Keep in mind these are trials. There was an article that interviewed a doctor (Dr. Pockros if I remember correctly) who stated that with all the new drugs coming out, they will need to be used in combo with peg and riba as it gives them the best chance to succeed.
That was a pretty general overview and I hope it answered your question.
That was a pretty general overview and I hope it answered your question.
First and foremost congratulations on clearing again. I am pulling for you big time. I hope you kick this viruses A$$! I can understand you being a little down and confused about your "blip" in test results but I would focus on the positive....your Clear again!!!
Don't give up and lose hope, you are winning this battle, and thank god the babies don't have it.
I really appreciate you sharing your results with all of us. I know I am not he only one interested in you and this treatment. I also say to hell with the drug company, while I can understand them wanting to keep the results under tight wraps and control what goes out there, I also think as patients and potential patients, having a dialog is a good thing.
I for one never put all my trust in drug companies or doctors for that matter. I take a lot from talking to people just like yourself to find out what is going on. The "inside scoop" is always pretty enlightening to me.
Don't give up and lose hope, you are winning this battle, and thank god the babies don't have it.
I really appreciate you sharing your results with all of us. I know I am not he only one interested in you and this treatment. I also say to hell with the drug company, while I can understand them wanting to keep the results under tight wraps and control what goes out there, I also think as patients and potential patients, having a dialog is a good thing.
I for one never put all my trust in drug companies or doctors for that matter. I take a lot from talking to people just like yourself to find out what is going on. The "inside scoop" is always pretty enlightening to me.
Ok, I just emailed Phil Lesh. I feel a bit better. Maybe he will send me a serenade. LOL
I agree with Can Do Man, youre not dying an early death...every once in awhile, not often (but then of course I'm not on these drugs like you are, but it even happens to us civilians) I get on a tangent that I'm not going to be around for very long, I think it happens to all of us that are suffering diseases (the SVR's are so lucky!) but it's just a tangent, it has no meaning really...none of us really know when our times are up, I've seen it often enough, where people I knew were really SUPPOSED, to go, but then they didn't either...sending you healing vibes, be well, you'll feel better soon...
Cut, I haven't kicked anybody YET and I'm all cried out. I'll be ok tomorrow. Y'all know how this stuff goes. Part of it is probably the meds too.
Ma, NM283 is a study drug. It is not available to the general public yet. There isn't a lot known about it right now but more information will be coming soon bc people are finishing up their 48 weeks of treatment on it.
On a side note, my nurse mentioned something to another study patient about the drug maker not wanting us to post information on the internet about our treatment. If she says something to me, I'm going to tell her that is not possible. I need you guys for support and I can post information about myself if I want. I don't recall a nondisclosure agreement in the document I signed. I guess I need to check again.
Ma, NM283 is a study drug. It is not available to the general public yet. There isn't a lot known about it right now but more information will be coming soon bc people are finishing up their 48 weeks of treatment on it.
On a side note, my nurse mentioned something to another study patient about the drug maker not wanting us to post information on the internet about our treatment. If she says something to me, I'm going to tell her that is not possible. I need you guys for support and I can post information about myself if I want. I don't recall a nondisclosure agreement in the document I signed. I guess I need to check again.
Please don't give up hope. By keeping on pushing on, we encourage other people on these boards! I've treated many, many times and haven't cleared, but I keep on pushing forth, even when I feel like giving up. God gives me strength. These drugs will make you depressed, it's a side effect of them. Try to tell yourself that it's the MEDICATION, that's doing this to you. Take a marker and mark off the days you have left on a calendar and put a big smiley face on your last day. Even if for some reason your worst fear happens and you don't clear, this doesn't mean that you're terminal, you will have some time to work with, DON'T GIVE UP! Those babies need you. We here on the HEP C boards need you. I know it's hard, BELIEVE ME, I know. But, we're here for a purpose. We got this disease for a reason, even though we don't always understand that reason, or don't understand why we don't clear when others have. Besides, that recent test could be a fluke, maybe your next test will show clearance again and the test after that, the same thing and so on and so forth! Stay hopeful. Susan
said........Cut, I haven't kicked anybody YET.........
Well here i am if you want someone. Cute has kicked the cr*p out of me so many times. Heck why should she have all the fun?
Well here i am if you want someone. Cute has kicked the cr*p out of me so many times. Heck why should she have all the fun?
I don't have the heart to kick anybody here but I do frequent another political message board that is "no holds barr" where I may insert my foot into somebody's bum if they start up on me tonight. LOL
maybe it was a false positive??
about the same thing happened to Ina and Sandi(lvdbygd) and since neither was abl to get another PCR right away to determine if it was a lab error or not, they took it as a breakthrough and treated for two yrs total or more. can they tell for sure if it was not an error?
as for the double thread...who cares? You know the drill
oh!....please stop pulling your hair or banging your head on the wall!
I know you have to be so frustrated!!
I hope you don't feel like kicking anyone in the clinic you go for the trial!
try to relax a bit, but if crying helps, do it!
about the same thing happened to Ina and Sandi(lvdbygd) and since neither was abl to get another PCR right away to determine if it was a lab error or not, they took it as a breakthrough and treated for two yrs total or more. can they tell for sure if it was not an error?
as for the double thread...who cares? You know the drill
oh!....please stop pulling your hair or banging your head on the wall!
I know you have to be so frustrated!!
I hope you don't feel like kicking anyone in the clinic you go for the trial!
try to relax a bit, but if crying helps, do it!
Your post made me realize one limitation of this forum is you cant give someone a big hug when they need it! Big hugs to you Alady! What came thru to me in your post was that your worry of dying is about your sweet babies and your ability to be there for them if this virus took you young with none of it being self sympathy at all, just you being a wonderful, loving responsible Mommy who would do anything for her children. They are so lucky to have you. I agree with all the others here, and what my doctor tells me (and I have some bada$$ damage going on) " you are more likely to die of a stroke at 90 than from Hep C"
Keep in mind the fact that you KNOW you have the virus and are fighting it is a huge advantage to not knowing it is lurking in you.Many people dont have the advatage of knowing they have it. The biggest thing to keep in mind is you should be SUPER HAPPY that you are UND!!! Way to go!! You have every right to be celebrating! Listen to Cuteus! It could even have been a false positive! Besides that test is in the PAST.. right here right now you are UND and on your way to SVR FOREVER. Congratulations!
Keep in mind the fact that you KNOW you have the virus and are fighting it is a huge advantage to not knowing it is lurking in you.Many people dont have the advatage of knowing they have it. The biggest thing to keep in mind is you should be SUPER HAPPY that you are UND!!! Way to go!! You have every right to be celebrating! Listen to Cuteus! It could even have been a false positive! Besides that test is in the PAST.. right here right now you are UND and on your way to SVR FOREVER. Congratulations!
You're not going to die , at least not from this. I've actually never been worried about dying from it , I've been more concerned about living with it. Your going to be around to see your children act nasty and rude towards you like everyones elses children do!!
In you last lab work, what were you AST and ALT levels?
In you last lab work, what were you AST and ALT levels?
I haven't seen the paperwork yet. I called the nurse and I really only had one question. I did ask her if my other numbers were ok and she said yes. I didn't find out what they were tho. My liver enzymes have been normal since I started treatment.
Just wanted to send you a big hug and tell you i'm thinking of you. I think it is GREAT that you are UND right now. And you never know, it could have been a lab error! Keep your chin up, and lean on the people here whenever you need it! Give your babies an extra hug from Boston tonight!
Your not gonna die an early death, you got many years ahead of you. HCV is pretty much slow moving, Theres other drugs in the pipeline to keep giving us hope. Plus you haven't finish these so SVR on these just could be yours. Put a smile on that pretty face. Your gonna be fine.... Wishing you the best
YEAHY!!! I found the thread...Im so sorry your sad Alady, and how do you know you aren't going to stay UND??? Please don't be sad. What does NM283 consist of? Can you give any details? I understand if you don't feel like posting back, but I'd really love to hear about it!! Prayers for Alady, Mkeela
I'm on NM 283 and pegasys. I was undetectable at week 12. The virus reappeared on my 32 week tests and disappeared again at my week 36 tests.
That sounds like really good news...being UND, I guess I got the impression you sounded depressed in your post?? I looked through the threads a bit, because I am unfamiliar with what meds you are on and your stats... "brain frog" has really got a hold of me and I can't remember anything.... I know I have seen many of comments from you...lovely ones at that, just drawing a blank here,(sooo sorry, I feel so dumb) but would love to get a "re-cap" on you if you don't mind posting back...helps me with my nightly prayers too :)! Oh, and I don't see a double post...I think I am losing it...LOL
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