Aa
Aa
A
A
A
Close
287900 tn?1218644218

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
32 Responses
Sort by: Helpful Oldest Newest
Avatar universal
Sorry Albany, your're not a "failure" but a fighter -- and all here that know you understand that.

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.

The silver lining is that you were only stage 1-2 on your biopsy. Assuming it's somewhat recent, you have every reason to believe that you've dropped a stage or so -- or at least haven't progressed much --  meaning minimal liver damage. It also means time to wait for better drugs to come out of trials meaning there should be no restrictions because you treated before with SOC. In fact, my understanding is that they are already running tx experiienced trials with PIs, at least in the states.

As to a biopsy causing more damage -- if I heard you right -- this doesn't seem right and I'm sure another doc might re-biopsy if they think it relevant.

Again, sorry about the news.

Be well,

-- Jim
Helpful - 0
9648 tn?1290091207
*You* are not a treatment failure, the *treatment* failed you.
Helpful - 0
Avatar universal
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
Helpful - 0
144210 tn?1273088782
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.
Helpful - 0
388154 tn?1306361691
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

Helpful - 0
Avatar universal
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.
Helpful - 0
Avatar universal
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
Helpful - 0
320078 tn?1278344720
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
Helpful - 0
476246 tn?1418870914
So sorry to hear about this. I could kick your doc's behind big time!!! How irresponsible!

I pray for the best!

Marcia

Helpful - 0
232778 tn?1217447111
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.
Helpful - 0
Avatar universal
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.
Helpful - 0
Avatar universal
Trinity: To: jmjm
Didn't post :)
--------------------------
Not 100% sure what that meant, but I'll always respond to a ":)" in kind :)
Helpful - 0
408795 tn?1324935675
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
Helpful - 0
Avatar universal
Think you might have meant ALB/Trish?

jmjm530


5 hours ago
To: ALB/Trinity
Helpful - 0
Avatar universal
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  
Helpful - 0
264121 tn?1313029456
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.
Helpful - 0
568322 tn?1370165440

"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.  
Helpful - 0
Avatar universal
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.
---------
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
Helpful - 0
Avatar universal
Trinity: Think you might have meant ALB/Trish?
--------------------
Oh, my, there two of you? Got to start paying more attention here!
Helpful - 0
Avatar universal
You're such a kidder :)
Helpful - 0
Avatar universal
I think one of the problems here are just too many women! Geez I have enough problems with them one on one :)
Helpful - 0
Avatar universal
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
Helpful - 0
Avatar universal
" 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
Helpful - 0
Avatar universal
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
Helpful - 0
2
Have an Answer?

You are reading content posted in the Hepatitis C Community

Top Hepatitis Answerers
317787 tn?1473358451
DC
683231 tn?1467323017
Auburn, WA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Answer a few simple questions about your Hep C treatment journey.

Those who qualify may receive up to $100 for their time.
Explore More In Our Hep C Learning Center
image description
Learn about this treatable virus.
image description
Getting tested for this viral infection.
image description
3 key steps to getting on treatment.
image description
4 steps to getting on therapy.
image description
What you need to know about Hep C drugs.
image description
How the drugs might affect you.
image description
These tips may up your chances of a cure.
Popular Resources
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
Can I get HIV from surfaces, like toilet seats?