Aa
ralapse again gen 2b soooo bummed
i cant take much more of this ****. im losin it a little bit. 3rd treatment but this was first time peg. start vl 22 mil. undetectable at week 12. first time ever undet. doc took me off at week 24. had my doughts about this decision. still undet. 3 month follow up, vl 39 mil. highest ever. now they want me to make a decision on my options. infergen, maintinence with peg only at 135 instead of 180, wait for new drugs, actually asked me if i knew of any new ideas!! i told the nurse i wanted to do the best option for my situation and reminded her i didnt want to die anytime soon. she says we all gotta die sometime!!!! im fed up with these idiots. im grade 2 stage 2, but my numbers are good, usually, exept vl is always very high. the got me on 2 blood pressure meds, crestor, effexor, wellbutrin. did a few months of bloodletting a while back for iron, pint a week. im always tired, fatiged, depressed. my eyesight is getting bad very quickly for some reason. my brain fog is so bad that i cant remember what happened 10 minutes ago. and thats off of tx!! its embarassing. 10 years ago i finally got sober. felt great for a year and was on no meds whatsoever. now 9 years of this ****. i think i need a new doc. hepatology specialist. anyone know of one in the dayton/cincinnati area? actually i dont know what i need or what to do. tx sides are so bad for me i can barely pay the biils. if not for my wife id be screwed. i need some hope. anybody got any ideas cause im bone dry.
Check out Dr. Bennett Cecil in Louisville, KY. He is a GI Dr. specializing in HCV. I go see him and I live out of state. Dr.'s around my neck of the woods would not treat me again after a 6 month post-treatment relapse. I retreated under his care and just received 3 month post-treatment undetectable notice. Hang in there and good luck to you.
Not sure what to say, except I am very sorry to hear this.
I have not been through it (first time on tx) so I cant even imagine what it is like. Discouraging I'm sure. But hang in there, rest for while and try to enjoy the holidays and in time you will know what to do. Keep the faith :-)
I have not been through it (first time on tx) so I cant even imagine what it is like. Discouraging I'm sure. But hang in there, rest for while and try to enjoy the holidays and in time you will know what to do. Keep the faith :-)
I don't have a lot to add, other than I wanted to throw my 2 cents in to say how sorry I am that you're going through this. So many here have relapsed and feel exactly as you do now, but they rebound, I think with the help from so many of the kind folks here.
Please take a deep breath, you're going to be okay. Get through the holidays then sit down and start the process of determining your future course of action. I have watched many people come here completely torn apart, and then marvel at how they suddenly start to piece everything back together, little steps, one at a time. You're going to be okay.
My very best to you and yours,
Debbe
Please take a deep breath, you're going to be okay. Get through the holidays then sit down and start the process of determining your future course of action. I have watched many people come here completely torn apart, and then marvel at how they suddenly start to piece everything back together, little steps, one at a time. You're going to be okay.
My very best to you and yours,
Debbe
what you have here is "failure to communicate'with the dr staff. see how the nurse woud react if it were her?
I guess the first idea I have is for you to take some strength from your stage 2/grade 2. Those are decent numbers, gives you some time to make INFORMED choices. A second opinion always helps with good choices, I know it made a world of difference for me.
Like you, I still have the brain fog and I've been off tx for 3 years now. It IS so frustrating, I could hear that in your post. Each of us copes in our own way, we are all kind of whacky, maybe that's the secret. Allow the whackyness, brain fog, but call it what it really is, a virus and not who you are. I got a bit happier when I stopped letting the virus define me, mostly when I learned I felt better if I kicked myself out of bed every day and laced on the walking shoes. I could only walk about half a block.
Now, I am a person with a virus, I have no options right now for treatment, but I can walk about 3 miles a day and that makes me happy. And I got a doc that I trust.
Small help on a day when it all comes crashing down, but I'll be thinking about you. Let us know here how you do, we get excited pixels when new folks show up or if we can help.
Like you, I still have the brain fog and I've been off tx for 3 years now. It IS so frustrating, I could hear that in your post. Each of us copes in our own way, we are all kind of whacky, maybe that's the secret. Allow the whackyness, brain fog, but call it what it really is, a virus and not who you are. I got a bit happier when I stopped letting the virus define me, mostly when I learned I felt better if I kicked myself out of bed every day and laced on the walking shoes. I could only walk about half a block.
Now, I am a person with a virus, I have no options right now for treatment, but I can walk about 3 miles a day and that makes me happy. And I got a doc that I trust.
Small help on a day when it all comes crashing down, but I'll be thinking about you. Let us know here how you do, we get excited pixels when new folks show up or if we can help.
Sorry to hear the news. I remember you posting. I think you are going in the right directions, to find an experienced hepatologist who has some experience in harder to treat cases with unique challenges (hemochromatosis?). There may be some options out there for you that a creative/risk taking doc may see. As a 2/2 (maybe better than that after tx'ing a few times) you certainly have options that may include re-tx, finding a trial, sitting out for a while. First step is a doc that has his stuff together. Good luck.
GOD i loved that movie.
as a stage 2-2 you will not die SOON. i am 3-4 and dr said i will not tx again if this one does not work. i concur. i will not waste one more year sitting on the couch missing life to tx on a 45% chance. wait for new drugs. if the peg is not working why try again. you are wasting years tx'ing that could be enjoyed.
i have lingering sides 5 months post tx and cannot remember if i had lunch or not. also fatigue. it IS from tx. period.
i would really recommend waiting for new drugs that seem real close to approval now. 2 years? sorry.
what kind of drugs did you do?
one heppers opinion only. good luck, we care and understand.
bobby
as a stage 2-2 you will not die SOON. i am 3-4 and dr said i will not tx again if this one does not work. i concur. i will not waste one more year sitting on the couch missing life to tx on a 45% chance. wait for new drugs. if the peg is not working why try again. you are wasting years tx'ing that could be enjoyed.
i have lingering sides 5 months post tx and cannot remember if i had lunch or not. also fatigue. it IS from tx. period.
i would really recommend waiting for new drugs that seem real close to approval now. 2 years? sorry.
what kind of drugs did you do?
one heppers opinion only. good luck, we care and understand.
bobby
Really sorry to hear your plight. I do not live in your area so not a lot of help there. I'm sure some one will be on who may help. I'm dealing with your type sx's to some degree or another. For me, the best I can do now is wait for new tx. Finding the right Dr would be the first priority for you. What the nurse told you was way out of line. Hope you you do better with the sx's.
Love your sig.
"What did he beat you with? Look at that. He had nothin, he beat me with nothin. That Luke is one cool hand."
Love your sig.
"What did he beat you with? Look at that. He had nothin, he beat me with nothin. That Luke is one cool hand."
Im going to try to focus on the positives. I'm so sorry you are going through this. It's no wonder you are feeling so frustrated.
I think you are a real warrior.You lost a battle, not the war. I don't know your stats other than you've tx'ed 3 times and are stage 2/2, which from here looks dang good if you ask me. How long did you tx each time? Did you do them all in a row? Dosage amounts? which kinds of IFN?
You suppressed it while you were treating and kept it down for a few months, to me that is a good thing.
If it was me, I'd either rest from the drugs for awhile and do some specific supplements and give it time and have some energy to work, try to renormalize things,etc.
or I'd jump back in, if I did that I would go for Infergen.
or maybe both, rest awhile then do it again using different drugs.
You know only you can decide.
I think you are a real warrior.You lost a battle, not the war. I don't know your stats other than you've tx'ed 3 times and are stage 2/2, which from here looks dang good if you ask me. How long did you tx each time? Did you do them all in a row? Dosage amounts? which kinds of IFN?
You suppressed it while you were treating and kept it down for a few months, to me that is a good thing.
If it was me, I'd either rest from the drugs for awhile and do some specific supplements and give it time and have some energy to work, try to renormalize things,etc.
or I'd jump back in, if I did that I would go for Infergen.
or maybe both, rest awhile then do it again using different drugs.
You know only you can decide.
Man this keeps making me SO SO MAD. WHEN are they going to change standard op to 48 weeks for geno 2 and stop calling it the "lucky" geno - this is CRAZY.
I don't think I'd shoot over to a different drug myself - I'd take a little break and get my strength back and then retreat for 48 weeks.
I think it's a LONGER THE BETTER situation from all of the studies I've read it sure seems that it hurts.
Anyway, that is what I would do (am doing...geno 1A and 1B on week 65 of 72 right now)...so I'm not saying something I wouldn't do myself.
I'm so sorry Luke - it just SUCKS
But remember - you DID have good response from the meds...so there is a LOT of hope!
I don't think I'd shoot over to a different drug myself - I'd take a little break and get my strength back and then retreat for 48 weeks.
I think it's a LONGER THE BETTER situation from all of the studies I've read it sure seems that it hurts.
Anyway, that is what I would do (am doing...geno 1A and 1B on week 65 of 72 right now)...so I'm not saying something I wouldn't do myself.
I'm so sorry Luke - it just SUCKS
But remember - you DID have good response from the meds...so there is a LOT of hope!
im 42 years old. got clean and sober 7/28/96. recovering heroin addict with an unquenchable thirst for cheap wine and anything else with alcohol in it. had problems with many other drugs over the years. started drinking at 12. heroin at 16. im very grateful to be sober today. thnx for all the heartfelt comments guys. sometimes i need to hear that kind of sruff to make me feel better and to remind me that ive never had it so good as i do today. guess i should quit whining. if anyone knows of a good doc in my area though i would very much appreciate it. thanx again, dave
I can see why you're feeling at wits' end at this point but try hard not to lose hope. I wouldn't worry too much that your VL is higher as I have seen that frequently - every time now that I think about it - with relapse. Before I relapsed the highest my VL had been was 2.3 million IU/ml and 3 weeks after stopping I relapsed and my VL was 6.85 million IU/ml. Though 39 million is a high VL it's not significantly higher than 22 million when you really think about it. I wish I had some sound advice but if you aren't feeling like you want to jump back in take a while and find someone in whom you will have some confidence and follow the advice you get then. I wish you luck and at least a modicum of peace of mind this Holiday Season. Mike
sorry to hear of all this, but at least youre off the meds for awhile, and youre not at a real high biopsy rating...youre not going to die anytime soon, none of us really know for sure on that point, of course, but at least youre not at a higher stage...youre on a lot of meds, do you think youre brain fog and fatigue might be, at least a little bit, attributable to all those meds youre taking? Just wondering...course I'm no expert...Please know that you have friends here, I wish you the best of luck with whatever decision you come up with, and yeah, I'd see another doc if I were you...also try to get on some real healthy eating and supplementation programs, if I were you, and of course, I'm not...
Love your screen name, "what we all have here is a failure to communicate" just trying to make you smile :))
Love your screen name, "what we all have here is a failure to communicate" just trying to make you smile :))
Having relapsed twice myself I know how your feeling. I'm still trying to deside what to do next. I was told to try Infergen daily but might wait for newer drugs. I'm a 1b /stage 2 grade 3 and finished last tx 11-05. Its taken a good year off meds to really feel normal again. Take your time to deside
I agree that maybe its time to find a different doctor that is more in Hep than who you have at the moment. Take a break over the holidays. I too am a 2a/2b stage 2/3 week 10. I have another PCR next week and I hope it is good news. I am wishing you the best. Hang in there and do enjoy your family and friends over the holiday.
Sorry to hear that Coolhand. :-( I'm a fellow 2b currently treating and I don't know what to say. So I was wondering if you have current issues with sugar r diabetic or r insulin resistant?...Maybe you could deal with these issues if they exists before going again for riba/IFN 4 48 weeks? How old are you BTW
Regards
scuba
Regards
scuba
The "moon" was inadvertent but I kinda like it now that I see it written. Sorry for that and I promise I'll get it right next time. Mike
Hello there - yeah, maybe like an old dried up oasis with skeletons lying all around. But seriously, it's good to hear from you and I appreciate your kind words.
When I mentioned rebound I was referring to right after relapse. My load was, as I said, 6.85 million IU/ml 3 weeks after stopping TX but 4 weeks later it was down to 2.5 million IU/ml. So my experience is that the VL can rebound to a higher number than before but after a while it settles back down. I can't tell if this conforms to your experience but I have seen this dynamic in more than a few people who relapsed. I was tested more frequently than most and that may account in part for my take on this stuff.
I want to wish you a Happy and Healthy Holiday Season. Take care. Mike
When I mentioned rebound I was referring to right after relapse. My load was, as I said, 6.85 million IU/ml 3 weeks after stopping TX but 4 weeks later it was down to 2.5 million IU/ml. So my experience is that the VL can rebound to a higher number than before but after a while it settles back down. I can't tell if this conforms to your experience but I have seen this dynamic in more than a few people who relapsed. I was tested more frequently than most and that may account in part for my take on this stuff.
I want to wish you a Happy and Healthy Holiday Season. Take care. Mike
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