Sorry Albany, your're not a "failure" but a fighter -- and all here that know you understand that.
Your medical team sound like morons and didn't give you much of a chance by treating only 48 weeks given that your were still detectible at week 12. Tx should have been extended at least to 72 weeks.
The silver lining is that you were only stage 1-2 on your biopsy. Assuming it's somewhat recent, you have every reason to believe that you've dropped a stage or so -- or at least haven't progressed much -- meaning minimal liver damage. It also means time to wait for better drugs to come out of trials meaning there should be no restrictions because you treated before with SOC. In fact, my understanding is that they are already running tx experiienced trials with PIs, at least in the states.
As to a biopsy causing more damage -- if I heard you right -- this doesn't seem right and I'm sure another doc might re-biopsy if they think it relevant.
Again, sorry about the news.
*You* are not a treatment failure, the *treatment* failed you.
I echo the others. You are a non-responder, not a failure. Not a single word you've said indicates any kind of failure on your part.
Frankly, I would consider reporting this doctor. Standard of care in Ontario is that if you are not responding at 24 weeks, you are off the meds. You did an additional 22 weeks of treatment for virtually nothing. The outcome would not have been any different for you however you would have been spared the extra 22 weeks of treatment. I would consider reporting him to the OMA or the CMA. This should not happen to anyone on treatment.
I'll locate the current standard of care, if you like. I know we all pick our battles and this one may not be one you want to take on, considering all you've been through. This just should not have happened to you .. and not in our country. Grrrrrr.
You have time to wait, sweetie. There ARE other treatments and options and next time you'll have a better doctor. They are currently running Telaprevir trials out of TWH for example. I do recommend that Dr. I posted to you about.
Your attitude will see you through. Many can have a long productive life with hep C, and I have no doubt you are one of them. Godspeed.
Ty for sharing you got a wonderful spirit and attitude.
I hope I will be able to think like you if my present second tx dont work.
Hope the new meds is gonna work for you the next time.
T: You did an additional 22 weeks of treatment for virtually nothing.
That certainly would have been the other option, to stop at week 24. What your doc did was the worst of all choices -- he extended to 48 weeks giving you very little chance of SVR but 48 weeks of exposure to the drugs.
Didn't post :) But while I am here now, just want to say to Albany how sorry I am and I do wish you much success with future treatment. You have a great attitude and they will take you far in life and through the most difficult of times.
you are not a failure, my you are definetely a fighter...keep on giving it the good fight!!!!
I wish you the best......
So sorry to hear about this. I could kick your doc's behind big time!!! How irresponsible!
I pray for the best!
It is very hard to understand this treatment approach, and appears very different from what I had out here in Alberta. When I did not respond sufficiently at 12 weeks (albeit mono, which provided me with another treatment option, as an acute), I was immediatley pulled (my decline in VL looked similar to yours at 12 weeks). I realize for some, it makes sense to go longer, with a view to a slow clearance, then a longer treatment (72 weeks), but if this is the approach, you would think there must be regular testing to ensure that the VL is still reducing at a good rate. I can't help thinking for a lot of people who don't respond well, that it is better to stop, have a break, and then have another crack rather than keep pushing something that isn't working. This seemed to be the view of my doctors anyway (who explained to me the the critical period to hit the virus is early in treamtent).
Better luck next time anyway, with a bit of luck, one of the new drugs coming on stream will give you the hit you need to get UND next time.
your doctor or that support nurse failed you here! you should have been tested at 24 weeks and if still detected STOP! I would let this doctor know that he botched your treatment and you are thinking about a malpractice suit against him. The way I look at it he made you suffer 24 weeks for nothing! The only justice i see here would be for him & his nurse to have to do the treatment for 24 weeks. Wishing you the best as you move forward.
Trinity: To: jmjm
Didn't post :)
Not 100% sure what that meant, but I'll always respond to a ":)" in kind :)
So unfortunate, I'm terribly sorry to hear someone with the same virus that most of us here on this forum have, got the tail end of the stick. With that said you are not a failure. It seems to me like the healthcare professionals in charge of your health care, failed you. You are a non-responder and it's really unfortunate that you went for so long and nobody let you know that. I hope that NP doesn't let that happen to anyone else. I think you will be ok and will clear the virus someday soon as you certainly don't sound like a failure, in any form of the word. I read this post at work, and it was very depressing to read about and not be able to respond sooner. I understand if you don't report that NP, but someone should. That just sux on so many levels. I'm sure we can make a whole long thread of how some of us have been given BS information and just flat out lies. Some of which have been given due to the stigma ppl with this virus receive over and over again. You better believe that your sharing of your sad story has helped and will continue to help others. Too bad you had to over-tx to find out that nobody was watching out for you. Well you have plenty of ppl here, watching out for you now.
Think you might have meant ALB/Trish?
5 hours ago
I will say you are taking this a lot better than I would have if given the same outcome, BIG hugs to you and never give up hope. I do have a question for you tho, how come you were put on peg alfa-2b instead of the peg alfa-2a? In getting your opinions you may ask if it is possible to re-treat with the alfa-2a if you are up to it. Do you know why the alfa-2b was used?
Sorry to hear of the non-responding to the present treatment for it was a long hard journey and even more reason to keep moving forward with the positive sprit that has got you to this point.
Your medical folks sound like such complete ***** that I have to ask - by pegintron, you do mean, pegintron PLUS ribavirin don't you? and if so, how much riba were you on? I am sure they did have you on riba, but then again - if you said so, I missed that part, and they seem so incompetent that I had to ask.
"Your medical team sound like morons and didn't give you much of a chance by treating only 48 weeks given that your were still detectible at week 12. Tx should have been extended at least to 72 weeks."
Her viral load at week 46 was 1,930,000.....almost the same as when she started treatment. Extending it to 72 weeks would have done nothing. If anything, it should have been stopped at week 24 if she still had virus. But I hear that in Canada they don't always do viral loads every 12 weeks.
CO: Her viral load at week 46 was 1,930,000.....almost the same as when she started treatment. Extending it to 72 weeks would have done nothing.
Without benefit of a crystal ball, my advice was based on her week 12 test which was the only test in play until EOT :)
As you might know, if someone is detectible at week 12 but UND at week 24, then 72 weeks sometimes makes sense. Perhaps even longer since she didn't make two-log by 12. As to stopping at week 24, that's certainly another option except her doc never tested here. Frankly, I would have stopped at week 12 given she didn't have significant liver damage, but then again I personally wouldn't have even treated without significant damage. But that's really another discussion with differening points of view.
Trinity: Think you might have meant ALB/Trish?
Oh, my, there two of you? Got to start paying more attention here!
I think one of the problems here are just too many women! Geez I have enough problems with them one on one :)
THANK YOU FOR HELPING ME TODAY!!!!! and thank you for your post !!!
I first want to say that you are a WINNER today--and of course "God's" child and you have "carried" the message today.... thank you!
I am sorry that you did not clear and I know that you will find "your course" for your miracle!
I too am Geno 1A --bla bla bla bla.....on my 33rd week of a maybe 52 wk..bla bla bla bla and -- I do the bla bla's because....you made it REAL for me today! I too have had HORRIBLE side affects from treatment.. and some days are "I" FEEL --just too much for me w/ a full time job... BLA BLA BLA BLA....but I am a "rapid responder" cleared a 4 wks...and have stayed cleared < 5m at last test 8/6/08...
So I have nothing--ABSOLUTELY NOTHING !! to complain about...!! yes--I take A LOT of rescue drugs--procrit --neupogen --bla bla bla bla...
ALBANY--- thank you for putting me in my place.... my prayers will be out there for you today.... I too am a friend of "Bill W's..."
" If anything, it should have been stopped at week 24 if she still had virus. But I hear that in Canada they don't always do viral loads every 12 weeks. "
In Canada, it's the general approach that if you're still detectable at 24 weeks, you're considered a non-responder. The only reason a doc wouldn't do a VL test at the 24 week mark when someone was still detectable at the 12 week mark is someone who is not up on current treatment..or someone who is careless. To me, this should not have happened here. We're not THAT behind.
Curious as to why you would consider extending tx to 52 wks. when you achieved a RVR at 4 wks and no breakthroughs? That's an additional month of tx you won't need if you are und through 48 wks?