Aa
My Treatment Outcome / Albany
It is time to share the outcome of my treatment with all of my supports, friends and family. I have waited, and shared with some of you, one on one. At this time, I need to share it all at once, with all of you, and hope that this mass email is not a bother to anyone.
please bear in mind that all of the information below is WHAT I HAVE BEEN TOLD, or HOW I UNDERSTAND IT, and that it is in no way advice to anyone, or anything like this. It is simply MY expereince with treating, MY outcome, and MYunderstanding of what I have been told and have come to understand.
I have been informed that the treatment process for HEP C has been a “failure”. How I detest that word. I am no longer considered treatment naive, as I have gone through the complete treatment process and was not successful in defeating the virus. Therefore I am labelled a “treatment failure’ … how I hate that term as well.
What the significance of this term means, according to the doctor who treated me, who I shall refer to as Doctor M, is that any new treatments that come down the line will be tried tested and confirmed on treatment naïve patients before being offered to treatment failures like myself.
Dr M did say that having gone through the Pegetron (pegalated interferon) process means that I have a statistically lower chance of developing liver cancer later on in life. He also said that my ALT / AST have lowered into the normal range, which is a good thing. He did say that there is no reason to do another liver biopsy at this point, as this would only be further damage and that there is nothing to warrant this at this time. He did indicate that my thyroid seems to be returning to normal as the treatment meds clear out of my body, which is great as I did not want to have to go on thyroid meds for life either. What helped me most of all though, was that Dr M did HEAR and ACKNOWLEDGE that the nurse who was supposed to be my main support through this process has NOT been this support, and has in fact hindered this process for me.
I also found out my original liver biopsy numbers, which are grade 1 of 4 on inflammation and stage 1-2 of 4 for fibrosis.
To summarize I have genotype 1 A of hepatitis C and treated with Pegetron (peginterferon alfa – 2b) from September 13, 2007 to August 15 2008, unsuccessfully.
Here are my viral load numbers ….
(Sept 2006) pre-tx = 2,140,000 iu/ml
(Dec 12 /07) 12 week = 55,200 iu/ml
(July 23/08) FINAL 46 weeks = 1,930,000 iu/ml
I went through many intensely painfully and convoluting side effects due to these medications, and had to be placed on support / rescue meds to maintain throughout the treatment process. Although Dr M indicated that the salmonella I had at weeks 10 to 16 did not negatively affect my treatment outcome, I still wonder ….
I am going for a second, and if necessary and third opinion. I WILL ask to be referred to hospitals with recognized experts / researchers and studies. I WILL push through, and have great odds. I KNOW THIS. I KNOW I have hepatitis C, which is something not many people DO know and I recognize that this is advantageous. I AM clean and sober now for over 8 years, which is greatly to my benefit. I HAVE power over my diet and ex cerise options, which I plan to utilise to my advantage. I WILL try, hopefully soon, to quit smoking cigarettes. I WILL look into natural and homeopathic options to lower the damage that this virus will try to do to my liver, and maintain as healthy a lifestyle as I can while I wait for MY successful treatment to come along. I WILL continue to garner strength and support from my family, friends, and support communities, and will try to offer these back when I am capable. I want to take this opportunity to thank you for all you have done for me, whether you are aware of how you have assisted me or not. Whether I have talked to you in person, in a meeting or online, whether you offered information or support or simply were aware of and compassionate and empathic for my situation, you have made a difference and have helped me through. I thank you.
Albany S
Durham Region, Ontario - Canada
please bear in mind that all of the information below is WHAT I HAVE BEEN TOLD, or HOW I UNDERSTAND IT, and that it is in no way advice to anyone, or anything like this. It is simply MY expereince with treating, MY outcome, and MYunderstanding of what I have been told and have come to understand.
I have been informed that the treatment process for HEP C has been a “failure”. How I detest that word. I am no longer considered treatment naive, as I have gone through the complete treatment process and was not successful in defeating the virus. Therefore I am labelled a “treatment failure’ … how I hate that term as well.
What the significance of this term means, according to the doctor who treated me, who I shall refer to as Doctor M, is that any new treatments that come down the line will be tried tested and confirmed on treatment naïve patients before being offered to treatment failures like myself.
Dr M did say that having gone through the Pegetron (pegalated interferon) process means that I have a statistically lower chance of developing liver cancer later on in life. He also said that my ALT / AST have lowered into the normal range, which is a good thing. He did say that there is no reason to do another liver biopsy at this point, as this would only be further damage and that there is nothing to warrant this at this time. He did indicate that my thyroid seems to be returning to normal as the treatment meds clear out of my body, which is great as I did not want to have to go on thyroid meds for life either. What helped me most of all though, was that Dr M did HEAR and ACKNOWLEDGE that the nurse who was supposed to be my main support through this process has NOT been this support, and has in fact hindered this process for me.
I also found out my original liver biopsy numbers, which are grade 1 of 4 on inflammation and stage 1-2 of 4 for fibrosis.
To summarize I have genotype 1 A of hepatitis C and treated with Pegetron (peginterferon alfa – 2b) from September 13, 2007 to August 15 2008, unsuccessfully.
Here are my viral load numbers ….
(Sept 2006) pre-tx = 2,140,000 iu/ml
(Dec 12 /07) 12 week = 55,200 iu/ml
(July 23/08) FINAL 46 weeks = 1,930,000 iu/ml
I went through many intensely painfully and convoluting side effects due to these medications, and had to be placed on support / rescue meds to maintain throughout the treatment process. Although Dr M indicated that the salmonella I had at weeks 10 to 16 did not negatively affect my treatment outcome, I still wonder ….
I am going for a second, and if necessary and third opinion. I WILL ask to be referred to hospitals with recognized experts / researchers and studies. I WILL push through, and have great odds. I KNOW THIS. I KNOW I have hepatitis C, which is something not many people DO know and I recognize that this is advantageous. I AM clean and sober now for over 8 years, which is greatly to my benefit. I HAVE power over my diet and ex cerise options, which I plan to utilise to my advantage. I WILL try, hopefully soon, to quit smoking cigarettes. I WILL look into natural and homeopathic options to lower the damage that this virus will try to do to my liver, and maintain as healthy a lifestyle as I can while I wait for MY successful treatment to come along. I WILL continue to garner strength and support from my family, friends, and support communities, and will try to offer these back when I am capable. I want to take this opportunity to thank you for all you have done for me, whether you are aware of how you have assisted me or not. Whether I have talked to you in person, in a meeting or online, whether you offered information or support or simply were aware of and compassionate and empathic for my situation, you have made a difference and have helped me through. I thank you.
Albany S
Durham Region, Ontario - Canada
I dunno about the protocols but not to test until an UND is acheived seems nutzo - was going to say ludicrous, but can't spell it and too lazy to look it up...
I'm so sorry to hear your news, my first tx also did not work. But to use the word 'failure' is outrageous. It is the medicine that has failed YOU! I understand that it is hard to live with both the outcome, and the words and that it plays havoc with your mind but DO NOT give up!
I was termed a treatment failure (hah, I despise that word!!) but I changed that and corrected anyone that used it around me, to being a non-responder to the current SOC treatment.
Also, don't give up hope either. Your Doc is a quack and he is quacking out of his bottom because I was enrolled on a trial for one of the new PIs BECAUSE I was a non-responder and the FDA have a commitment to finding better treatments and cures as quickly as possible for the 'hard to treat' population.
The PI worked, I went UND, have been since June last year, have just finished 48 weeks tx and am waiting to have my follow up tests.
Keep your eyes and ears open, read everything you can on this forum and watch for new trials that people mention. Best of all, I really think you need to get yourself an excellent hepatologist who is involved with research and studies that will be able to fast track you in to a trial once one that fits YOUR criteria comes up.
I had to wait 5 years, but it did happen! And I made a decision not to let the virus ruin my life and was determined to enjoy life no matter what. Sounds to me like you have the same attitude and I applaud you.
Keep on believing and keep the faith!
All the best to you,
Epi x
I was termed a treatment failure (hah, I despise that word!!) but I changed that and corrected anyone that used it around me, to being a non-responder to the current SOC treatment.
Also, don't give up hope either. Your Doc is a quack and he is quacking out of his bottom because I was enrolled on a trial for one of the new PIs BECAUSE I was a non-responder and the FDA have a commitment to finding better treatments and cures as quickly as possible for the 'hard to treat' population.
The PI worked, I went UND, have been since June last year, have just finished 48 weeks tx and am waiting to have my follow up tests.
Keep your eyes and ears open, read everything you can on this forum and watch for new trials that people mention. Best of all, I really think you need to get yourself an excellent hepatologist who is involved with research and studies that will be able to fast track you in to a trial once one that fits YOUR criteria comes up.
I had to wait 5 years, but it did happen! And I made a decision not to let the virus ruin my life and was determined to enjoy life no matter what. Sounds to me like you have the same attitude and I applaud you.
Keep on believing and keep the faith!
All the best to you,
Epi x
I'm glad to hear that your Hep C is moving slowly for you and that you're monitoring it regularly and also that you feel good. I hope you have a good knowledgeable hepatologist.
If you've been through a couple of failed treatments then you know what treatment is like and what you can expect and you've tried it. How long ago did you try treatment, out of curiosity?
Does your doctor send you for liver biopsies and again, out of curiosity, what stage/grade does your biopsy put you at?
What genotype are you?
Trish
If you've been through a couple of failed treatments then you know what treatment is like and what you can expect and you've tried it. How long ago did you try treatment, out of curiosity?
Does your doctor send you for liver biopsies and again, out of curiosity, what stage/grade does your biopsy put you at?
What genotype are you?
Trish
have you heard of milkthistle......i have had hep-c for i would guess at least 28-30 years.
and i have been thru a couple of failed treatments........i have been taking milkthistle for many years.to this day my doc,s say my liver is smooth and test,s results come back pretty daggone remarkable for having such a thing for so long.my viral load was kind of high but was told that that could change at any giving day.i do have chronic liver disease but i also have quit drinking and sixteen tears ago and had one relapse for about a year,it was just a pity party because of a lot of surgeries i had.
i also quit smoking two years ago,and i exercise as often as possable,which is dailyeither extensive house cleaning or yard work or walking streching and lifting when i can,also i eat as good as possable.i am disabled now because of what i went thru(surgeries)nothing to do with hep-c.
faith is my guild,jesus,s path is what i follow as much as i can.he has giving me the strenth i need to go on.
god bless
alinpain
and i have been thru a couple of failed treatments........i have been taking milkthistle for many years.to this day my doc,s say my liver is smooth and test,s results come back pretty daggone remarkable for having such a thing for so long.my viral load was kind of high but was told that that could change at any giving day.i do have chronic liver disease but i also have quit drinking and sixteen tears ago and had one relapse for about a year,it was just a pity party because of a lot of surgeries i had.
i also quit smoking two years ago,and i exercise as often as possable,which is dailyeither extensive house cleaning or yard work or walking streching and lifting when i can,also i eat as good as possable.i am disabled now because of what i went thru(surgeries)nothing to do with hep-c.
faith is my guild,jesus,s path is what i follow as much as i can.he has giving me the strenth i need to go on.
god bless
alinpain
Albany, I'm so sorry to hear this. You are NO failure, your Dr., support nurse and tx are the failures. It seems you had very incompetent advice, tx. Had you posted thru out your tx on what they were doing, your VL info? I know many here would have stepped in to offer suggestions, advice. I don't recall any post on the how's of your tx. To be needlessly subjected to these drugs, for months is just absurd. Very poor judgment in this Dr.'s advice and treatment and he really need's to be made aware of it. I hate reading these post, of obvious, lazy, destructive mistakes by Dr.s, like another here that is treating 24 weeks yet the Dr. feel's there is no need for Geno typing as 1 isn't common there! I'm 2b and was told 'don't count on it' when I said I hoped it'd be 2, not so common, yet of course they tested. What if they did that here? I'd have treated for 48 weeks per a Dr.s guess!?
Anyway, very sorry for you. You stood a chance at a successful tx, yet it was surely ruined by this inept Dr.
Effie, You bring back tx memories, and not found ones I might add! Your VL was not 'that high' to start. You are obviously having an 'iffie' tx so please do ask more, demand more testing, better decisions from your Dr. as Albany has shown us what damage mistakes can cause. Also wanted to say I'm sorry your suffering :( This tx is brutal! Hang in there. Ask questions!
Best to you both, LL
Anyway, very sorry for you. You stood a chance at a successful tx, yet it was surely ruined by this inept Dr.
Effie, You bring back tx memories, and not found ones I might add! Your VL was not 'that high' to start. You are obviously having an 'iffie' tx so please do ask more, demand more testing, better decisions from your Dr. as Albany has shown us what damage mistakes can cause. Also wanted to say I'm sorry your suffering :( This tx is brutal! Hang in there. Ask questions!
Best to you both, LL
You definately did not fail unfortunately this treatment for Hep C is brutal emotionally and physical. I started with a VL 1,450,000, stage 1-2. I also have Geno 1a and its a tough bug to kill. My Vl at 4 weeks was 230,000, 12 weeks undetected, at 16 weeks i became detected again at 23,500, just got back my 20 week labs and now my Vl is 8,000. My wbc r at 2.0, i have lost 30 lbs and canot afford to lose any more, i have a rash on my face, and i am losing my hair i am on an anti depressant and sleeping pills and this has been the hardest thing in my life i have had to deal with. Its not that any of us are failures its just that we have no control of this disease except to treat and that makes it very hard because most of us have always had control of r lives . You r hope for many of us with your great attitude, because sometimes things get real tough and we all need to remember to suck it up because what is the altrnative. I dont know if i will beat this but i will keep fighting till treatment proves to eradicate this virus or i will wait for new drugs. God bless you and my prayers to you Albany and to all of us that r fighting with everything we have. Effie
Your attitude has already won! You are such a fighter NOT a failure! You do need a doctor with a better outlook himself. You can probably teach him a thing or two. There are those on here who have cleared, those who are trying to clear, and those who have not cleared YET! Hep C will be a part of our lives forever.
You ARE a blessing to me.
Cindy
You ARE a blessing to me.
Cindy
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?
Trin
Trin
" 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.
Trish
???
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.
Trish
Dear Albany;
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..."
Thanks...Dorsey
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..."
Thanks...Dorsey
I think one of the problems here are just too many women! Geez I have enough problems with them one on one :)
Trinity: Think you might have meant ALB/Trish?
--------------------
Oh, my, there two of you? Got to start paying more attention here!
--------------------
Oh, my, there two of you? Got to start paying more attention here!
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.
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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.
-- Jim
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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.
-- Jim
"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.
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.
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.
jasper
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.
jasper
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.
God Bless
God Bless
Trinity: To: jmjm
Didn't post :)
--------------------------
Not 100% sure what that meant, but I'll always respond to a ":)" in kind :)
Didn't post :)
--------------------------
Not 100% sure what that meant, but I'll always respond to a ":)" in kind :)
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.
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.
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.
So sorry to hear about this. I could kick your doc's behind big time!!! How irresponsible!
I pray for the best!
Marcia
I pray for the best!
Marcia
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