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
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.
Trin
Trin
you are not a failure, my you are definetely a fighter...keep on giving it the good fight!!!!
I wish you the best......
peace
rita
I wish you the best......
peace
rita
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
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.
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.
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