Aa
successful treatment
Can anyone share a little about their experience with successful treatment - pcr negative and sustained. I am getting ready to try to kill this thing off. I've had it for 30 years. Don't know where I am right now - last biopsy was 1996 - before divorce. But I am better than plenty of people and thankful for that. I focused for a long time on the horror stories with interferon but time to start looking at the payoff. Don't know if I will be able to wait for telepravir or bocepravir. A shame how long it has taken but it does look like they are getting very close. I hope - intend - to be around to see the day where they can knock it out in everyone.
Anyone with cirrhosis who has gotten pcr neg and living okay? anyone with big increase in energy? Spleen back to normal? Improved liver histology?
I am 51 and have good benefiits and medical. I need to give it a shot.
Any thoughts about precautions to take? Part time nurse? I am divorced with 2 kids but they are teens now. No family to help but finally I might have enough support structure to give it a go.
Any comments appreciated. Tell me about your sucess.
Anyone with cirrhosis who has gotten pcr neg and living okay? anyone with big increase in energy? Spleen back to normal? Improved liver histology?
I am 51 and have good benefiits and medical. I need to give it a shot.
Any thoughts about precautions to take? Part time nurse? I am divorced with 2 kids but they are teens now. No family to help but finally I might have enough support structure to give it a go.
Any comments appreciated. Tell me about your sucess.
1a's and 1b's with low VL who clear within the first 4 wks of TX (URVR or Ultra Rapid Viral Response) are routinely and successfully treated for 6 mos. in other countries. Guidelines written by U.S. doctors are just slow to change because U.S. doctors want a lot more research under their belts before they change an established guideline.
Just s good stroke of luck for a change! Thanks Hon!
All of this time I've known you Chevy and you are one of the only 1As who treated for six months that got SVR that I've known. There are so few people that lucky..........I'm so glad one of them was you !!!!!!!!!!!!!!!!!!!!!!
I am 43 years old and have had hcv for probably 20+ years. 1A stage 2. I found out I had it thru routine bloodwork about 9 years ago. I chose to not treat due to side effects and after some life changes I chose to treat in 2007. I had a low viral load and only had to treat for 6 months. I was undetectable at 2 weeks and have been ever since. Will be having my 2 year post bloodwork drawn on Thursday!
I was one of the lucky ones who only had to do 6 months. It certainly was not an easy task but I got through and only missed I believe 1 or 2 days from work. Some days were harder than others.
Surely use the advice above and learn EVERYTHING YOU CAN and get copies of all your bloodwork! Be very involved in your care.
Its not easy but you CAN DO IT!
You have come to the right place, there are some very knowledgeable people here who can be of great support.
Best of Luck!
Shari
I was one of the lucky ones who only had to do 6 months. It certainly was not an easy task but I got through and only missed I believe 1 or 2 days from work. Some days were harder than others.
Surely use the advice above and learn EVERYTHING YOU CAN and get copies of all your bloodwork! Be very involved in your care.
Its not easy but you CAN DO IT!
You have come to the right place, there are some very knowledgeable people here who can be of great support.
Best of Luck!
Shari
Good for you - there really isn't nearly as much to be afraid of as you think. I remember being SO worried about the side effects blah blah blah. But the great thing about treatment is it has a start and an end date and it can save your life!
I had two genos 1A and 1B and I treated for 72 weeks and have been cured well over two years now. Negative negative negative and that is the way it will stay thank God. I missed 3 days of work during the entire time which wasn't easy at all but...if I could do it anybody can because I am a big baby!
Fun...heck no but usually the things in life that are the most important to our lives aren't easy to achieve. It's a reward at the end for all your hard work when you get SVR.
Odds these days of being cured are going up up up. Around here they are well over the 50% you hear about. Why? People take the time to educate themselves and learn as much as they can to be proactive in their treatment. This - combined with all the new study data and things the doctors have learned only recently really gives us an edge.
Continue to ask all the questions you have. Learn all you can. Get hard copies of every single test you get done so that you can learn how to read them. It's not very difficult and we've all done it. It can end up really making a huge difference! Plus it's sort of fun to be able to read it and have the doctor look at you and go huh how did you do that. hahahaha.
We have to entertain ourselves the best we can with this disease don't we?
Good luck.
I had two genos 1A and 1B and I treated for 72 weeks and have been cured well over two years now. Negative negative negative and that is the way it will stay thank God. I missed 3 days of work during the entire time which wasn't easy at all but...if I could do it anybody can because I am a big baby!
Fun...heck no but usually the things in life that are the most important to our lives aren't easy to achieve. It's a reward at the end for all your hard work when you get SVR.
Odds these days of being cured are going up up up. Around here they are well over the 50% you hear about. Why? People take the time to educate themselves and learn as much as they can to be proactive in their treatment. This - combined with all the new study data and things the doctors have learned only recently really gives us an edge.
Continue to ask all the questions you have. Learn all you can. Get hard copies of every single test you get done so that you can learn how to read them. It's not very difficult and we've all done it. It can end up really making a huge difference! Plus it's sort of fun to be able to read it and have the doctor look at you and go huh how did you do that. hahahaha.
We have to entertain ourselves the best we can with this disease don't we?
Good luck.
Geno 1b with low viral load (250,000). 38 years with virus. Age 57. Biopsy was grade 3 inflammation, stage 4 fibrosis ("probable or incipient cirrhosis"). I could either treat or wait for liver failure to start so jumped into TX in a different PI trial than Tippy's (boceprevir for TX naive patients). With my geno and low VL, I cleared on SOC (peg/riba) immediately, unusual for someone with cirrhosis. Then followed up with 6 mos. of the PI (28 wks. total time). Very sick with side effects (being super-responsive meant more SX for me) but managed to work without too much difficulty until about 3 weeks before the meds ended, when work allowed me to go on extended sick leave. Took a lot of sick days as needed and removed self from any physical aspects of work during the 6 mos. of regular work. I am now 12 wks post treatment, with negative PCR's and mostly normalized bloodwork. TX side effects continued for several months after ending the meds and I just declared myself "well" a few weeks ago.
I was always a high energy outdoor person and it has taken time to recover physical stamina and strength, mostly because I got in a habit of watching Tivo and playing on computer instead of getting out. I am now the same as I was before.
The interferon warnings are terrifying but you can't know how it will effect your personal system until you try it. You won't need a private nurse, just adequate communication with the doctor's office and copies of your labs as they are done. Count on being tired but wait and see about the rest of the side effects. It's no cakewalk but it is perfectly doable and a huge percentage of patients who SVR reduce their fibrosis (scarring) by 2 whole stages. You can go back to a normal life and normal expected life span after clearing the virus. I will re-biopsy in June 2010 to see how my fibrosis regression has gone and then get completely on with my life. Good luck!
I was always a high energy outdoor person and it has taken time to recover physical stamina and strength, mostly because I got in a habit of watching Tivo and playing on computer instead of getting out. I am now the same as I was before.
The interferon warnings are terrifying but you can't know how it will effect your personal system until you try it. You won't need a private nurse, just adequate communication with the doctor's office and copies of your labs as they are done. Count on being tired but wait and see about the rest of the side effects. It's no cakewalk but it is perfectly doable and a huge percentage of patients who SVR reduce their fibrosis (scarring) by 2 whole stages. You can go back to a normal life and normal expected life span after clearing the virus. I will re-biopsy in June 2010 to see how my fibrosis regression has gone and then get completely on with my life. Good luck!
Hi,
I was diagnosed GT-1 with grade 3, stage 3/4 fibrosis in late ’04. I had hepatosplenomegaly per U/S scan; the doctor said I might have been in early cirrhosis.
I treated in ’05 with Pegasys/riba; poor initial response and subsequent relapse. I treated again in ’06 with Peg-Intron/riba; this time did the trick and I have been enjoying sustained response/cure since July, 2008.
Yes, both the liver and spleen have returned to normal size; liver histology improvement is unknown; follow up biopsy isn’t indicated at this time. All biochemical markers have improved, suggesting improvement in hepatic synthesis and overall function.
Yes, I’d do the treatment again in a heartbeat :o). No doubts on my part—
Bill
I was diagnosed GT-1 with grade 3, stage 3/4 fibrosis in late ’04. I had hepatosplenomegaly per U/S scan; the doctor said I might have been in early cirrhosis.
I treated in ’05 with Pegasys/riba; poor initial response and subsequent relapse. I treated again in ’06 with Peg-Intron/riba; this time did the trick and I have been enjoying sustained response/cure since July, 2008.
Yes, both the liver and spleen have returned to normal size; liver histology improvement is unknown; follow up biopsy isn’t indicated at this time. All biochemical markers have improved, suggesting improvement in hepatic synthesis and overall function.
Yes, I’d do the treatment again in a heartbeat :o). No doubts on my part—
Bill
Forgot to mention - I'm in my low 50's by the way
I opted for treatment and received it 3 months after I was diagnosed. I have no idea how long I had the disease. It could have been military service which would have made it almost 30 years ago or it could have been a surgery I had that would have made it 15 years ago. No idea.
I opted out of a liver biopsy because that would have delayed my treatment another 3 months. An MRI and ultrasound did sow my liver to be in good condition generally with no cirrhosis. My alt was in the 200s and I had a count in the 800 thousands, genotype !a . I was tired all the time
I went through 43 weeks of treatment. I was a rapid responder. Treatment was extremely difficult for me. It's not difficult for everyone - many are able to remain in work throughout the whole thing. I went on temp disability during treatment.
One month after treatment I felt great. Better than I had in years. My alt lowered to the 30s's during treatment and 3 months after treatment it was in the 20's . I remain undetectable and SVR . I feel fantastic and don't regret a single thing about doing treatment.
I opted out of a liver biopsy because that would have delayed my treatment another 3 months. An MRI and ultrasound did sow my liver to be in good condition generally with no cirrhosis. My alt was in the 200s and I had a count in the 800 thousands, genotype !a . I was tired all the time
I went through 43 weeks of treatment. I was a rapid responder. Treatment was extremely difficult for me. It's not difficult for everyone - many are able to remain in work throughout the whole thing. I went on temp disability during treatment.
One month after treatment I felt great. Better than I had in years. My alt lowered to the 30s's during treatment and 3 months after treatment it was in the 20's . I remain undetectable and SVR . I feel fantastic and don't regret a single thing about doing treatment.
I too had hep c for 30 years or more. My biopsy two years ago was stage 1, grade 2 so not much liver damage. I was not going to treat until I was offered a trial with Telaprevir and it was a no placebo trial. How could I refuse, when I knew I'd get the real drug, and it was all free.
I did tx for 6 months and it was rough and had almost every side. Many days I doubted if I could continue, but I did. Once you get to UND its hard to stop, so you learn to adjust and pace yourself.
There are nurses on the forum who worked while treating and maybe they will chime in with some input.
I do not have a big increase in my energy level. Its the same as it was before starting tx. I was hoping to be like the energizing bunny, but that didn't happen. Probably has to do more with age ( 54 ) than anything.
I had huge problems with my thyroid during and after tx. Still working on getting that straightened out. I am having other side effects after treatment, but so far nothing major, just enough to be aggravating.
You should get a biopsy soon to know what degree of liver damage you have. You may be able to wait until the PI's are approved. At least with the PI's your success rate is better and your tx time could be shortened to 6 months vs 11 months with SOC.
Your in the metro Detroit area, correct? If so you can contact Henry Ford Hospital liver dept because they conduct trials out of there. Trials are free and so is the biopsy.
I did tx for 6 months and it was rough and had almost every side. Many days I doubted if I could continue, but I did. Once you get to UND its hard to stop, so you learn to adjust and pace yourself.
There are nurses on the forum who worked while treating and maybe they will chime in with some input.
I do not have a big increase in my energy level. Its the same as it was before starting tx. I was hoping to be like the energizing bunny, but that didn't happen. Probably has to do more with age ( 54 ) than anything.
I had huge problems with my thyroid during and after tx. Still working on getting that straightened out. I am having other side effects after treatment, but so far nothing major, just enough to be aggravating.
You should get a biopsy soon to know what degree of liver damage you have. You may be able to wait until the PI's are approved. At least with the PI's your success rate is better and your tx time could be shortened to 6 months vs 11 months with SOC.
Your in the metro Detroit area, correct? If so you can contact Henry Ford Hospital liver dept because they conduct trials out of there. Trials are free and so is the biopsy.
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