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treatment

i have been on the combination therapy for 11 and a half months..i was told by my doctor that he treats very aggressive and instead of 48 weeks standard for geno-type 1 that he would require 52 weeks.....after 2 months of treatment my levels were declining but my doctor said not fast enough. he asked if i would consider 2 shots per week instead of 1...i did not think that was going to work for me...we agreed on a shot every 5 days until i was testing negative. after 2 more months i was testing negative and i returned to one shot per week plus the rebetol i have taken a through out ..i have tested negative for seven and a half months now, but my doctor is now saying he told me that he wanted 10 months of negative results and i am ready to stop treatment at the one year mark instead of two additional months.
i am 42 years old and have been in very good health my whole life my liver biopsy showed damage as less than 20 percent.i have had minimum physical side effects but have suffered sleeplessness...fatigue .low grade fevers..headaches very constant..moodiness and depression...i am upset about my doctors suggestions but i respect him as my doctor and know he cares very much about the virus not coming back,but i was emotional commited to the one year. i have currenty done 53 shots and the one year mark would make a total of 56. i would like any feed back ,and i am considering a second opinion.
12 Responses
9648 tn?1290094807
Let me preface my response by telling you that I'm not treating. Nevertheless, I've been on this board for well over a year as well as other hep C chat boards and I've heard a lot of stories. IMHO you are very lucky to have a doctor with such an aggressive stance toward this virus. I'm sure it feels like you're nearing the finish line of your marathon and the line just jumped back out of view. The problem is there's no telling if he's right or not. But it sure would be good insurance against the hepC interloper to do what you can to really make sure its gonna be gone if you're gonna fight it at all.  

The latest statistics are showing the best odds for clearance for those who have a 2 log drop by 12 weeks. If you didn't get that, continuing those extra months would be prudent.

But, as I said. I'm not treating, so I don't know what it feels like to face what you are facing. I know that when I do decide to treat, I want to be as aggressive as I can. I don't like to do things twice. I'm on my first husband (22 years), I quit smoking once (15 years ago after a 20 year addiction), and so on. It seems that to succeed one must be willing to go the full race even if it changes so close to the finish line.

Good luck with your decision.
Avatar universal
I have only been on tx. for 4 weeks, but it is real rare to find a Dr. that is willing to go against standard protocal, and do everything in his poewr to kill this dragon. I'd thank God and go for it!! Just mt $.o2 cents worth. Good luck killing the dragon.   Joni
Avatar universal
thank you both for your comments and encouragement..i think when i was in my 8th month of shots and told the doctor i had headaches almost every day he finally mentioned that this treatment can cause swelling of the brain..and also re-iterated that not all is known as to what this drug can do.i have worried that it can cause long term effects and as i struggle with depression due to personal issues as well as the treatment many thoughts have raced through my mind.....i am very thankful for my doctors aggressive approach and i am still very gung ho to slay the dragon. i needed some feedback and got immediate responses. i wish you both well with your treatments as well ...this is my 1st time on this forum and thank you once again....i will be back.
Avatar universal
They have meds for you to take for the worst of the sides. I know alot about not wanting to take more pills, but i think whatever you have to do to get thru this, you should do.   My best, Joni
Avatar universal
Many doctors like to have their Type 1 patients go for a full year on tx AFTER getting their first undetected PCR, especially if you become undetected after 12 weeks, but before 24 weeks.  I have just finished 72 weeks of high dose Peg-Intron/Riba, and was undetected at week 18, so I ended up doing 54 weeks after the first undetected PCR.  Type 1's have a much higher relapse rate, and extending therapy MAY provide a better chance of permanent SVR...which is why you are doing all of this torturous stuff to begin with.  My suggestion is that you go as long as you can possibly go, and then hope for the SVR.  Remember there is no guarantee of SVR by extending, but many top docs believe that it can increase your odds of success.  The thing that you really want to avoid is stopping early, and then relapsing.  It means you will eventually do a longer and tougher regime next time.  My best wishes to you.  You can re-adjust your 'mind-set' on length of tx.... It set me back as well, but I got over it..and kept going.  It even got a little easier after awhile.
Avatar universal
Hi everyone,  I am new to this forum, having found it three days ago when my Dr. told me that I had relapsed.  I agree that is better to have an agressive doctor.  I am genotype 1a and was on peg-intron/riba for one year.  Needless to say I am not thrilled at repeating treatment.  Arizona, if staying on the treatment for two more months means that you have better chances on being a sustained responder -- do it!!!  Two months is better than repeating the treatment.

Also, may I just add a note of "thank you" to everyone here.  I cried for two days after my doctor's news.  I do not have a support system and after reading the posts here do not feel so alone.  I even believe there is light at the end of the tunnel.

Lisa
Avatar universal
Hello and welcome to the forum.  So sorry to hear your news.  All of us know there's a chance of that reality, but to hear the words must knock you over.  Once you can pick yourself up and dust yourself off, go right back after that old dragon ~ there IS a light at the end of the tunnel!  You have a support system here now, so keep in touch and let us know how you are doing.
ambush :)
Avatar universal
Welcome. I am sorry you got such bad news. It's a fear in all of us while on tx. as you can see this is a great place for support and info. Hope we see you around. LL
Avatar universal
Hi and welcome. Sorry to hear your bad news, but ya sound like you have a level head about it. We will cry w/you and pray for you. Hang in there, God is on our side. Much Luv, Cindee
Avatar universal
I know this just "SHOCKS" everyone but I have an opinion on this subject.
You should thank your lucky stars that you have a doc whos primary goal is to kill The Dragon. Most of us would kill for s doc like that. He saw the early signs of failure and actually acted on it rather than just let you suffer and then fail....like over 1/2 of we type 1's do. Right or wrong he's doing his best for you and is really doing the only things he can reasonably do to give you your best shot.
There is not much data out there on the true value of extending tx for type 1's beyond the standard 48 weeks. So much of the trial data is in the form of a general "One size fits all" approach. I think tx should be much more "personalized". Yours is becomming just that.
Peg/Intron levels have been shown to drop pretty low at about the 5 day mark. That is one of the advantages of Pegasys. The fact he saw this as an option to help your improve your "too slowly" dropping viral counts says to me that he is on the cutting edge of this stuff. He's done his homework.
Look...the truth is that as a type 1 you basically get ONE shot at this. If you fail or relapse there is very little left to you to reasonably beat this thing. The virus mutates and becomes almost impossible to erradicate. The odds really suck for relapsers and non-responders.
Your case has already shown that it is a tough one based on your initial slow response to the standard tx. You and he both know you have to get aggressive. HE is....Will YOU??
He only is asking for 2 months.....8 weeks. If your sides are as you say then you can do this. Sure you feel lousey. We all did(do). But you will feel absolutely HORRIBLE if you fail and it comes back. At least you will be able to say you've given it your BEST shot and there was nothing more to be done.
I say "JUST DO IT"!!

   Just a side note....Research came out this week that showed that mens intelligence levels drop dramatically when they are around good looking women. It was quite a study to read about. Are there ANY hot women who didn't already know this? Just don't get around any good lookin women while you make this decision...........
Avatar universal
I am going thru a similar situation. I am doing tx for 60 weeks. I'm on week 42 and my sx increased lately so I find the thought of doing the extra months very difficult to deal with at times. At my 6 month check-up my doc and I agreed to this plan. I was active and healthy with low labs and almost no liver damage.I personaly believe that just the few symtoms I started getting the last few years means they will likely  increase,and  that progression of this disease increases after the age of 50. I've had it probably 28 years. As indicated on this forum. there won't be much else I can do so I'm going for it now. The thought of doing tx over is very disturbing to me an I really don't think it would be of much use. Nows your chance and I think you are very lucky to have such an involved agressive doc. I do understand the mental aspect your going through. There are days I hate the thought especially now when I see poeple here getting ready to finish when I would have finished but I just try not to think about it. It's only a few more months. We can do it!!! Hope you can hang in there. My other bigger worry is if I don't do it and I relapse it would be real hard for me to beal with mentally. I've got to try now. Good luck with your decision. Only you can make it as you know but I know what your going through in that decision. It is a tuff one. LL
Avatar universal
I will chime in with the others in wishing you the very best in your next choice, whatever it is. Welcome.

Those with aggressively treating doctors, congrats.  They are truly pioneers, not waiting for the drug companies' to advise them.  In case I need to re-treat, I will not stay with the present practice, I want someone willing to think "out of the box".  I NEED that kind of doc.

Who do you have, nyc_dame? I'm in LI.
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