I wish you all the best too. Those new drugs sound really good that are coming down the road. I hope they get here soon. But go and enjoy your life. Sounds like you have a lot of look forward to.
Zlikster said
Mar 8, 2013
Jon u are inspiration (saw your story how u managed to pull of karate champ while on interferon!)...exciting medical times for hepatitis c all oral therapies with new protein and protease inhibitors just around a corner. I strongly belive that in 2014/2015 we will have all oral dual or triple DAA therapy available in USA. So dont despair!
best
packerfan24 said
Mar 7, 2013
Jon I hope everything turns out for the best. We are all praying for you. I know all of us on this board are behind you and are in your corner. Good luck in your karate fight on NBL.
Ken
Cinnamon Girl said
Mar 7, 2013
Really sorry to hear this, Jonathon, very disappointing for you. You are an inspiration to everyone here with your fantastic attitude... you`re a real fighter and have done all you could. Take good care of yourself and turn your attention to other things now while you wait for the next round...your time will come I`m sure!
Best of luck to you, we`ll still be here whenever you want to stop by! ~ Jill
mallani said
Mar 7, 2013
Hi Jonathan,
Your Viral Load was given in log. units, as 5 log.units = 100,000.
Sorry you didn't respond but, as you say, you appear to be Interferon Resistant. You have a great attitude, so have a break and try the all-orals next time. As you have failed with a NS3 blocker, you won't be able to take a combo that includes one of these (eg Abbott).
Good luck! Cheers
Biggyb said
Mar 7, 2013
2ndTimeAround wrote:this is my second disappointment but third time is a charm anyway, right?
Good luck, i hope third time is a charm, as this is my 3rd time. You will beat this sissy dragon soon.
2willy said
Mar 7, 2013
you have good attitued, good spirt and have given it your best for this time around, Keep the group posted as how you are doing. Prayers are with you
bill and family
Mary Jane said
Mar 7, 2013
Hey Jonathan, you gave it your best shot... Hang in there for the final verdict from doc.. agree with the others best friends in town.... lab errors happen and then their are those folks who have the luck of the draw, they just don't respond to interferon. Always amazed at your stamina thru the course of Incevick it laid me out flat... Keep up your good spirits and if this just didn't get it , there's round 3 with the NEW drugs... all the best MJ
2ndTimeAround said
Mar 7, 2013
so, it is official. my viral load went up to over 100,000. seems i am resistant. speak to the doctor next week officially, but i am not taking any more drugs as of today as treatment will be discontinued. I never made it to und.
good news is that there are new things on the horizon, i am not cirrhotic, and i am in good shape! i am totally bummed of course, but it's not the end of the world. i did want that slain dragon tattoo though! this is my second disappointment but third time is a charm anyway, right?
thanks to you guys too. reading your stories has helped me immensely. i have been touched by some of your struggles and how you kept going. i hope that i was some inspiration to someone too.
let me leave you with this: thanks to this treatment, i got healthier, not sicker. i am eating better, i lost weight, i am exercising regularly, and i am stil refereeing soccer matches. i have a renewed appreciation for the "little things". Now that i am not on interferon, i am going to resume my karate training and work towards my goal of winning my sparring division in the 2014 NBL Super Grands.
god bless you all!
TeddyTrout said
Mar 6, 2013
I can feel your pain Bro. I don't know what eles to say. Hope your doctor will have better news when you see him. I have 1 client in my group that is still detectable at week 12 but his logs fell enough to warrent him/her to stay with the trearment. I guess they will keep them on till week 24 and decide. Agian I feel your pain.
Bouba said
Mar 6, 2013
What does your liver doctor say? Nurse's "Around 5 copies" doesnot make sense as this should not be a detectable number.
in Switzerland you are UND when its below 15. Good luck!
Bills said
Mar 6, 2013
Try to get your doc asap to give you the vrdict I do feel your pain and have just recently
I agree with Alan aka ( News ) Strange ( good ) things have happened for some Sometimes test come back reading DET <25 Meaning it's real low below 25& can't tell the number There are other test that give a number ( such as yours ) I don't want to interpret this wrong so here's what I know
MY 3rd treatment triple w/ Incivek start July The test I was given was this DET / UND <25 @ 4 weeks I was UND (Undeted VL <25) ( couldn't be detected ) Considered UND so I continued so long as I was UND @ 26 weeks in Viral load was detected again They did did take a 2nd sample to check for false reading But It was back and I was stopped I was devastated as shocked as I was But There was relief
The Inciveck appeared to do it's part I knew now Interferon / Riba was not holding me from breaking through.all three TX's It saved me from going the whole 48 weeks and the pain and suffering form Intf / Ribv and long term use
Relief Now I know I have to wait for the New Drug Another Consolation: It's unfortunate but I KNOW I did my part and it ain't me that failed. They Doc's tried tried.
I'm thankful I appear to be healthy enough to wait and My doc's agree to wait. I get labs by end of week to see how all blood work is coming back ( after 1 month Stopped TX ) I expect good results so does Doc I feel a lot better. Just my usual HEP C symptoms I started with. My guess is your pretty healthy working out etc. Hope there's no urgency to treat and you have time on your side etc. Some of just don't draw a winning hand all the time. The better stuff is coming. Hang on I guess I have to what else can I do. What Here's what I posted when it happend "end of round 3 Me and the Dargon are tie." Many fighters have to go the distance like ALi & Frazier Were still in the fight.
2ndTimeAround said
Mar 6, 2013
based on what i was told today, it was around 5 copies. regular nurse in tomorrow so i'll call back.
mallani said
Mar 6, 2013
Hi Jonathan,
Sorry to hear the VL went up at 12 weeks.
Just to recap: VL start-32M. VL 4weeks- 316 VL 8weeks- 251 VL 12 weeks- gone up ? number.
The stopping rules for Incivek triple were: VL >1000 at 4 or 12 weeks, or Detectable at 24 weeks. These may have changed. In Australia, you need to be Undet. by 12 weeks, otherwise all Rx is stopped. I guess you'll find out when you see your doc.
As you were a non-responder to previous Rx, you may be Interferon resistant. I must say I was surprised you were able to indulge in such physical activities so I wondered whether the Peg and Riba were working. As we are finding patients getting incorrect VL information from Nurses, let's hope a mistake was made. Keep us posted. Cheers.
packerfan24 said
Mar 6, 2013
When I was on incevik everything went down. My vl was at zero at 4 weeks. Red and white blood cells went down real low himo was down also. Been off tx now for almost 8 weeks and counts are starting to go up.
Ken
2ndTimeAround said
Mar 5, 2013
yeah, i hear ya. so according to my doctor, at the 8 week mark i was way down to 251. they would have liked to have seen me und, but i wasn't. said i should be there on the next go-round. i mean, it is what it is, and i'll wait and see. the lady that called me back is not part of the hep c group in the practice, she was just returning my call so who knows?
appreciate the support, i know mistakes can be made. just been a long week so far, and it's only tuesday!
i am sure it'll get better.
news said
Mar 5, 2013
It's easy for me to say, but very hard to do. Try to remain calm until you get some verification and an explanation from your doctor's office. You mention your VL went up. Did you even have a VL on the your previous labs? It should have been UND for nearly 8 weeks. I can't imagine them letting you continue if you didn't have UND by 8 weeks of Incivek.
But until you get some details and interpretation of these results, and perhaps a repeat test, don't throw a towel in the ring. We have seen some odd results on single tests that were later rescinded because of another test.
Alan
2ndTimeAround said
Mar 5, 2013
so.....i just got my labs back. seems that my vl went up from the last time. labs were on the 28th of feb. and i finished the incivek on 1st of march? wtf is that all about?
don't see the doctor until the 12th, but i gotta tell ya, i am really pissed off! for the record, i didn't deviate an iota from my medication regimen, haven't even smelled alcohol since december! only other thing they said was that my hemoglobin was down too.
any thoughts?
p.s. i feel discouraged but not defeated.
12Step Guy said
Mar 5, 2013
Wow, what a shock. I thought if you weren't UND at week eight they were supposed to discontinue? I have a history of being interferon resistant, maybe you are too?
Im in your corner; with each others support all of us are going to go the distance. We just have to be part Coyote and part Roadrunner
-- Edited by 12Step Guy on Tuesday 5th of March 2013 09:06:15 PM
best
Jon I hope everything turns out for the best. We are all praying for you. I know all of us on this board are behind you and are in your corner. Good luck in your karate fight on NBL.
Ken
Really sorry to hear this, Jonathon, very disappointing for you. You are an inspiration to everyone here with your fantastic attitude... you`re a real fighter and have done all you could. Take good care of yourself and turn your attention to other things now while you wait for the next round...your time will come I`m sure!
Best of luck to you, we`ll still be here whenever you want to stop by! ~ Jill
Hi Jonathan,
Your Viral Load was given in log. units, as 5 log.units = 100,000.
Sorry you didn't respond but, as you say, you appear to be Interferon Resistant. You have a great attitude, so have a break and try the all-orals next time. As you have failed with a NS3 blocker, you won't be able to take a combo that includes one of these (eg Abbott).
Good luck! Cheers
Good luck, i hope third time is a charm, as this is my 3rd time. You will beat this sissy dragon soon.
you have good attitued, good spirt and have given it your best for this time around, Keep the group posted as how you are doing. Prayers are with you
bill and family
Hey Jonathan, you gave it your best shot... Hang in there for the final verdict from doc.. agree with the others best friends in town.... lab errors happen and then their are those folks who have the luck of the draw, they just don't respond to interferon. Always amazed at your stamina thru the course of Incevick it laid me out flat... Keep up your good spirits and if this just didn't get it , there's round 3 with the NEW drugs... all the best MJ
so, it is official. my viral load went up to over 100,000. seems i am resistant. speak to the doctor next week officially, but i am not taking any more drugs as of today as treatment will be discontinued. I never made it to und.
good news is that there are new things on the horizon, i am not cirrhotic, and i am in good shape! i am totally bummed of course, but it's not the end of the world. i did want that slain dragon tattoo though! this is my second disappointment but third time is a charm anyway, right?
thanks to you guys too. reading your stories has helped me immensely. i have been touched by some of your struggles and how you kept going. i hope that i was some inspiration to someone too.
let me leave you with this: thanks to this treatment, i got healthier, not sicker. i am eating better, i lost weight, i am exercising regularly, and i am stil refereeing soccer matches. i have a renewed appreciation for the "little things". Now that i am not on interferon, i am going to resume my karate training and work towards my goal of winning my sparring division in the 2014 NBL Super Grands.
god bless you all!
I can feel your pain Bro. I don't know what eles to say. Hope your doctor will have better news when you see him. I have 1 client in my group that is still detectable at week 12 but his logs fell enough to warrent him/her to stay with the trearment. I guess they will keep them on till week 24 and decide. Agian I feel your pain.
What does your liver doctor say? Nurse's "Around 5 copies" doesnot make sense as this should not be a detectable number.
in Switzerland you are UND when its below 15. Good luck!
Try to get your doc asap to give you the vrdict I do feel your pain and have just recently
I agree with Alan aka ( News ) Strange ( good ) things have happened for some Sometimes test come back reading DET <25 Meaning it's real low below 25& can't tell the number There are other test that give a number ( such as yours ) I don't want to interpret this wrong so here's what I know
MY 3rd treatment triple w/ Incivek start July The test I was given was this DET / UND <25 @ 4 weeks I was UND (Undeted VL <25) ( couldn't be detected ) Considered UND so I continued so long as I was UND @ 26 weeks in Viral load was detected again They did did take a 2nd sample to check for false reading But It was back and I was stopped I was devastated as shocked as I was But There was relief
The Inciveck appeared to do it's part I knew now Interferon / Riba was not holding me from breaking through.all three TX's It saved me from going the whole 48 weeks and the pain and suffering form Intf / Ribv and long term use
Relief Now I know I have to wait for the New Drug Another Consolation: It's unfortunate but I KNOW I did my part and it ain't me that failed. They Doc's tried tried.
I'm thankful I appear to be healthy enough to wait and My doc's agree to wait. I get labs by end of week to see how all blood work is coming back ( after 1 month Stopped TX ) I expect good results so does Doc I feel a lot better. Just my usual HEP C symptoms I started with. My guess is your pretty healthy working out etc. Hope there's no urgency to treat and you have time on your side etc. Some of just don't draw a winning hand all the time. The better stuff is coming. Hang on I guess I have to what else can I do. What Here's what I posted when it happend "end of round 3 Me and the Dargon are tie." Many fighters have to go the distance like ALi & Frazier Were still in the fight.
based on what i was told today, it was around 5 copies. regular nurse in tomorrow so i'll call back.
Hi Jonathan,
Sorry to hear the VL went up at 12 weeks.
Just to recap: VL start-32M. VL 4weeks- 316 VL 8weeks- 251 VL 12 weeks- gone up ? number.
The stopping rules for Incivek triple were: VL >1000 at 4 or 12 weeks, or Detectable at 24 weeks. These may have changed. In Australia, you need to be Undet. by 12 weeks, otherwise all Rx is stopped. I guess you'll find out when you see your doc.
As you were a non-responder to previous Rx, you may be Interferon resistant. I must say I was surprised you were able to indulge in such physical activities so I wondered whether the Peg and Riba were working. As we are finding patients getting incorrect VL information from Nurses, let's hope a mistake was made. Keep us posted. Cheers.
When I was on incevik everything went down. My vl was at zero at 4 weeks. Red and white blood cells went down real low himo was down also. Been off tx now for almost 8 weeks and counts are starting to go up.
Ken
yeah, i hear ya. so according to my doctor, at the 8 week mark i was way down to 251. they would have liked to have seen me und, but i wasn't. said i should be there on the next go-round. i mean, it is what it is, and i'll wait and see. the lady that called me back is not part of the hep c group in the practice, she was just returning my call so who knows?
appreciate the support, i know mistakes can be made. just been a long week so far, and it's only tuesday!
i am sure it'll get better.
It's easy for me to say, but very hard to do. Try to remain calm until you get some verification and an explanation from your doctor's office. You mention your VL went up. Did you even have a VL on the your previous labs? It should have been UND for nearly 8 weeks. I can't imagine them letting you continue if you didn't have UND by 8 weeks of Incivek.
But until you get some details and interpretation of these results, and perhaps a repeat test, don't throw a towel in the ring. We have seen some odd results on single tests that were later rescinded because of another test.
Alan
so.....i just got my labs back. seems that my vl went up from the last time. labs were on the 28th of feb. and i finished the incivek on 1st of march? wtf is that all about?
don't see the doctor until the 12th, but i gotta tell ya, i am really pissed off! for the record, i didn't deviate an iota from my medication regimen, haven't even smelled alcohol since december! only other thing they said was that my hemoglobin was down too.
any thoughts?
p.s. i feel discouraged but not defeated.
Wow, what a shock. I thought if you weren't UND at week eight they were supposed to discontinue? I have a history of being interferon resistant, maybe you are too?
Im in your corner; with each others support all of us are going to go the distance. We just have to be part Coyote and part Roadrunner
-- Edited by 12Step Guy on Tuesday 5th of March 2013 09:06:15 PM