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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
Trinity: Think you might have meant ALB/Trish?
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Oh, my, there two of you? Got to start paying more attention here!
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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
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