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1194986 tn?1268671845

Slow Responder

Tomorrow I get my bloodwork results from the 15th week injection.
I'm confused about some of the things I've been reading and told.

I'm Type 1 diagnosed in August, 2009. I started treatment with a viral load of 8,500,000.

My 12 week report came back with a viral load of 450,000 (up from 150,000 at week 10).
My doctor told me to stop treatment.

On my own, I refused to give up based on one report and continued.
I'm now waiting for this second report based on 15 weeks.

I'm curious about the "SLOW RESPONDERS" I keep reading about.
I'm curious about the various attitudes regarding the "24 WEEK PROGRAM" of which I am on.
I'm curious as to why I would be told to stop now and NOT at 4 WEEKS or 24 WEEKS.

I'm holding out hope that a miracle will turn my results around tomorrow.
Am I being stupid??
16 Responses
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184420 tn?1326739808
I think its absolutely sickening how some in the medical community scare people into doing this treatment... i dont understand why ANYONE who is stage 2 or less is even being told to treat right now when better treatment is so close...

Helpful - 0
1194986 tn?1268671845
Necrosis and Rigor Mortis are terms I used to 'describe' my side effects because traditional terms did not seem to fully illustrate how I felt. I don't know how else to describe what happened to my skin, my hair, my nails; or how I felt laying in bed day after day in so much pain I was unable to roll over.

I believe everyone is individual and has their own unique, inherent health issues that they bring with them into treatment. My personal issues with treatment were repeated skin infections, staph & fungal (my toenails actually fell off), repeated bronchial and sinus related infections (including extreme exasperation of my existing asthma), and severe joint and muscle pain.
Helpful - 0
233616 tn?1312787196
sorry to hear about your situation John, it's always a heartbreak when things go this way.

I'm just curious as to when your necrosis kicked in and what the genesis of that was.

The reason I ask is because I had a similar event....sepsis in my abdomen, which caused a rebound VL.   I opted to continue to treat through a surgery which respoved the sepsis, and then promptly I went UND.
Did anyone discuss the possibility that any severe infection could throw off your tx success rate. This happens because the extra INF is going towards warding off the other infection and not just the HCV.

In other words, you might not be a traditional nonresponder, you may have had a complication that skewed your results, which would mean you could treat successfully.
If you are in an early stage, it might behove you to wait for the PI's class to become available however.
There are folks that successfully treat what respond late, but they need extended tx to succeed, and not all do.  I did not, but MY girl and others have. It's a tough call.
mb
Helpful - 0
1117750 tn?1307386569
i am sorry poohbah, you will beat this, stay positive
Helpful - 0
179856 tn?1333547362
Thank you Johnny I remember all to well not being UND at week 12 (dying to post my I'm UND thread :( and the decision to have to extend. At the end my 4 week post PCR said failed...failed...failed - I didn't realize it was a false positive at the time and after 72 weeks well I'll just say I know how absolutely upsetting it is.

Sort out your feelings. Once the interferon/riba gets out of you and you are feeling better it will be better. And it's almost summer - at least you can go in the sun again something I couldnt do for 72 weeks and realize now how great it is!

We all have crazy attacks - we are human after all let alone on drugs (and not in the fun, 80s way either ;)
Helpful - 0
Avatar universal
You may not like my response, because I am a "newbie" and because I have not actually had the treatment yet. That is exactly why I had so many questions. Because of reading so many posts similar to yours, I feel like we are a voice of four million roughly.I don't understand how cancer can have so many treatments, yet for HCV, there is only one(besides trials) and why aren't we being listened to when treatment is so horrific for so many? Why aren't other alternatives available? Wait a minute here, I am not advocating that what way we do have is crap, I am just wondering why all of us have to go through this at all.It seems like a tough journey. Maybe in just a few years even more advances will be made for all genotypes. When there is a will, there is way, but don't let wether it happens or not bogg you down. I think positive support is so important for all of us. Many will not get the SVR that they had hoped for, so what is their life? It is worth everything. Don't feel shut out from the world because you have this. You have been given a gift to be alive. I am now interested in taking great care of myself, because I want to and because I feel good doing it.It has been an awakening experience having HCV.
I personally think it has to do with a spiritual path. I kind of feel like I came into this world, God made me, but he also made what I have. My nana always tells me that you will not go one day before the lord wants you. Her husband had cancer for almost twenty years. Each year they said it would be his last for many of them. Having HCV doesn't mean your life is over. Yes, many will post and say about the things it could lead to, but going on the medhelp website and seeing so many other things we could have, is much worse. My mind was the worst before I started finding answers.I appreciate your path, struggles and hardship because what you went through has in some way helped me.
Helpful - 0
Avatar universal
Listen Poo, if you find your recovery is moving too slowly, I know where there's a good used juicer for sale, however, it does come with some stipulations.

Your going be fine, hang in there!

Trin
Helpful - 0
476246 tn?1418870914
I'm really sorry to hear about treatment failing you. It's a bizznitch, this disease!

But like NY and Epi said, you can be hopeful with the PI's.

Wishing you the best, a quick recovery from tx and a lot of strength to get through this disappointment.
Helpful - 0
1194986 tn?1268671845
Epiphiny: You just made me cry.
Helpful - 0
1194986 tn?1268671845
NYgirl, you are a saint.
Thank you for not becoming upset with me by some of my "attacks."
I've read many of your posts and respect your experience and opinions.

I don't want to feel like a pariah (anymore) either but I have to live with this for now, so I'm going to work on readjusting my attitude about myself and this disease.

I have a lot of work to do.
Helpful - 0
577132 tn?1314266526
Excellent post, nygirl, thank you for that :)

Poohbah, I am very sorry to hear your news.  The same thing happenned to me but I went a full 24 weeks before they told I me had no response and I was a Geno 3 - supposedly EASY to treat, hah!

I notice you said you failed treatment - it's not like that, SOC treatment failed YOU! I had to sort through all these feelings also and it was a hard place to be but YOU are NOT the failure, ok?

So, to the future.  Being a non-responder does not make unsuitable for trials for the new PIs that are out there, quite the opposite.  You are now in a group of people that the race is on to fnd a cure for, just like I was.  Once you have recovered from this bout you need to start looking at trials for non-responders and they are around I assure you!

On your side you are a Geno 1 non-responder - there are far more trials for that group than there are for Geno 3 and 2s.

I know thngs have not worked out as you hoped and I understand the crushing blow that news brings but you must not give up hope.  Believe me, you can beat it.

Stay strong.

Epi.
Helpful - 0
179856 tn?1333547362

Alot of us are in latter stages of liver disease or realize that just because it can take 20 years to get to stage 2...you can get to cirrhosis in just a couple of years.  Also some of us like me didn't want to have the virus around per chance I would infect anyone - which I became really afraid of as much as I said don't use my clippers, don't use my razor I know kids don't pay attention and think they will live forever.

And basically just knowing I had the disease made me feel like a pariah I didn't want it any longer - let alone cirrhosis.

That said I'm very sorry you did not succeed.  It's not "most" of us that don't succed fortunately.  I wish your doctor had been able to tweak your meds way back at week 12 when it was appropriate but it sounds as if you were not able to handle it already so he probably had no option.

This disease suck sand as time goes by please make sure to continue to 'watch' your liver disease - don't just ignore it and put your head in the sand it can creep up on you quickly and is not worth end stage liver disease.
Helpful - 0
1194986 tn?1268671845
The results are in from last week. I failed treatment.
It's taken me this long to write about it because I've been so upset.

I know many/most of you on this site have also failed treatment or (even more devastating) had a viral breakthrough. I know my current emotions and frustrations must have been felt by most of you as well.

As this toxic poop leaves my body, I look forward to feeling better and becoming more active. I look forward to my necrotic skin correcting itself, I look forward to growing the hair back on my head and the nails back onto my toes.

I attended my first yoga class this morning. I laid on the mat most of the time, but it felt good to move my body and put myself into positions I haven't done in so long. I hope to regain some strength over the next month or so, and hopefully return to work (if there's still a position for me).

I want to be honest with all of you. I don't understand so much of the "discussion" here. There's only one method of treatment (at the moment) regardless of who has the most progressive liver disease, or which genotype Cindy-Lou-Who has. It would have helped me a great deal in the beginning if I had better understood how RVR was critical to this treatment. I may have saved myself a lot of hardship AND my job.

I would also like to see more discussion on WHY it's so important to treat this disease, the drugs are so debilitating on the body (I could feel myself dying). I feel I was rushed into treatment by fear tactics. I was never told or understood about Telaprevir combo therapy, and now I no longer qualify for any drug studies.

I have gained so much experience and knowledge.
I have also gained much frustration.
Helpful - 0
Avatar universal
The other possible explanation for being stopped at Week 12 and not Week 10 is because you have until Week 12 as a Genotype 1 to achieve a 2 log drop. (From your profile, it looks as if you are Geno 1, correct?)  With a starting viral load of 8,500,000 - a two log drop would be 85,000.  

At Week 12 with a viral load of 450,000 you had less than a 2 log drop.  So that's the point at which treatment would be stopped for you.  

Really, it indicates that this round of treatment is not working for you.  It's more than just getting to UND - undetected - it's a matter of hitting certain milestones along the way - that 2 log drop by Week 12 being one of them.  

I don't know much about your treatment and what stage of liver damage you are at and what your prescribed dosages have been , etc.  It does indicate - based on what is known about treatment - that it's time to stop and regroup and consider what factors might need to be tweaked to make treatment more successful for you - perhaps keeping an eye on the PI's we all keep talking about that are coming down the pipe.  

Trish
Helpful - 0
971268 tn?1253200799
I am very sorry to hear this.  

I do believe that once your viral load rises while you are still on treatment, that is considered a viral breakthrough and classifies you as a non-responder. I think your doctor was probably correct in advising you to stop tx. But I am confused as to why you would be on a "24 week program" if  you are a Geno 1 treating in the U.S.  Are you on another drug as well besides interferon and ribavirin?

In any case since you are in New York you are in the land of good hepatologists who see many HCV patients, and you could always get a second opinion if you want to.

There are also many new drugs coming out that might work for you even if this tx doesn't.  Best of luck.
Helpful - 0
Avatar universal
Your doctor told you to stop treatment because the interferon is not suppressing the virus effectively and your viral load increased instead of decreasing.  That's more of a non response than a slow response.

24 weeks is usually the cut off for slow responders.  Slow responders are just that.
The viral load continues to decrease but at a slower rate in hopes that the patient will be UND by 24 wks.  The cut off for slow responders is usually 24 wks which I'm assuming is what you are calling a "24 week program"?

I don't think you're being stupid, just hopeful but realistically your chances of SVR are very low if the viral load does not drop and you are not UND by 24 wks.  If you are able to continue treatment, 72 weeks of treatment would give you the best chance of achieving SVR.

Good Luck with the results
Trinity


Helpful - 0
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