My Treatment Outcome / Albany

[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

[Effiedanna]

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

[cindyh113]

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

[Trinity4]

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

[Trish77]

" 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

[dorsey15]

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

[jmjm530]

I think one of the problems here are just too many women! Geez I have enough problems with them one on one :)