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

[rita863]

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

[Trinity4]

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

[jmjm530]

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.

[comeagain]

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.

God bless

ca

[gauf]

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.

[Trish77]

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.  

Good luck.

Trish