Aa
Undecided about options
Trying to question the scenarios available to me since I have the CC allele
1-If I do the standard soc and rvr at 4 weeks would I only have to do 24 weeks?Or will I be doing 48 regardless?
I have a high VL so this would be a chance Id be taking,but I have read that high VL's were also associated with the CC gene.Maybe this is why my dr said he knew I was a CC? It was an educated guess but he was right.
I would like the best possible tx with shortest time.
I know Ive already talked about this but im just going crazy thinking bout all this cindy
Thinking OUT OF THE BOX as I always do !!!!
1-If I do the standard soc and rvr at 4 weeks would I only have to do 24 weeks?Or will I be doing 48 regardless?
I have a high VL so this would be a chance Id be taking,but I have read that high VL's were also associated with the CC gene.Maybe this is why my dr said he knew I was a CC? It was an educated guess but he was right.
I would like the best possible tx with shortest time.
I know Ive already talked about this but im just going crazy thinking bout all this cindy
Thinking OUT OF THE BOX as I always do !!!!
at the end of the day one has to keep the whole picture in view.
the whole picture includes the stat that IL2 testing is only 85% predictive, meaning it's not the only factor involved here. I know, as I'm the one that brought up the whole IL28b testing in her in the first place.
What that means is that even if you find out your alelles and even though your genetics does play a part, it's not the only factor. That's one.
Two is that you have a chance to do the PI, then do it, with or without good genes, certainly with bad genes absolutely, but even if you were CC it would still make sense to add the PI to avoid mutant or wild strains. Most research shows that 3 and preferably 4 different drugs punching holes in all the phases of viral replication is the best way to beat this bug into oblivion. Otherwise the chances of developing resistance are very real.
Retro virons can mutate every 20 minutes sometimes. This one has a 48-72 hour window before resistance can set in...so the more nuclear the landscape, the less chance the buggers will live to fight another day. Just my opinion.
third...you doc is a bad guesser. It's just as likely that you could have a high blood sugar...higher BS means more insulin secreting, more insulin means more natural interferon is being destoyed, more interferon being canceled out by the insulin means more virons as the immune system cannot do it's job. This is why in many disease calorie rescriction often causes improved results, or even spontaneous resolutions, and why animals on calorie resticted diets live 1/3 longer on average.
Bottom line is there no way a doctor can say you are CC based on your viral load...
that is guessing at it's worst.
Fourth, if you were to add the PI, and you went UND in week 1-4, then you could consider treating for 6 months fairly safely, but to just do the Riba/INF alone and do that would be more dangerous. I would only consider that in one case: IF you were CC on the IL28b, IF you had no insulin resistance, and IF you went UND by week 4 and preferably by week 1-2, if you had no cirrohsis, no excess body fat, and if you were not tolerating the tx well, then cut it short...otherwise, stick with it if just on SOC for the full year, or as close to it as you can reasonably manage, because this virus can effectively hide in tissue the constant bombardment with the tx drugs is the only method that has proven successful.
Because UND does not mean virus free, it only means none can be detected in the blood, not that there are not hangers on, tucked away in some impervious tissue, that will reemerge in the spring, like those pesky gophers.
Did you ever go to Chuckie Cheese and play the game where you bang the gophers on the heads, and every time you bang one down in it's hole 2 more pop up?? Well that's the way this virus is, so to cut tx. too short is to risk having to go through it all again.
I was UND for over a year, and my virus still came back, so this geno1 is one tough bugger.
mb
the whole picture includes the stat that IL2 testing is only 85% predictive, meaning it's not the only factor involved here. I know, as I'm the one that brought up the whole IL28b testing in her in the first place.
What that means is that even if you find out your alelles and even though your genetics does play a part, it's not the only factor. That's one.
Two is that you have a chance to do the PI, then do it, with or without good genes, certainly with bad genes absolutely, but even if you were CC it would still make sense to add the PI to avoid mutant or wild strains. Most research shows that 3 and preferably 4 different drugs punching holes in all the phases of viral replication is the best way to beat this bug into oblivion. Otherwise the chances of developing resistance are very real.
Retro virons can mutate every 20 minutes sometimes. This one has a 48-72 hour window before resistance can set in...so the more nuclear the landscape, the less chance the buggers will live to fight another day. Just my opinion.
third...you doc is a bad guesser. It's just as likely that you could have a high blood sugar...higher BS means more insulin secreting, more insulin means more natural interferon is being destoyed, more interferon being canceled out by the insulin means more virons as the immune system cannot do it's job. This is why in many disease calorie rescriction often causes improved results, or even spontaneous resolutions, and why animals on calorie resticted diets live 1/3 longer on average.
Bottom line is there no way a doctor can say you are CC based on your viral load...
that is guessing at it's worst.
Fourth, if you were to add the PI, and you went UND in week 1-4, then you could consider treating for 6 months fairly safely, but to just do the Riba/INF alone and do that would be more dangerous. I would only consider that in one case: IF you were CC on the IL28b, IF you had no insulin resistance, and IF you went UND by week 4 and preferably by week 1-2, if you had no cirrohsis, no excess body fat, and if you were not tolerating the tx well, then cut it short...otherwise, stick with it if just on SOC for the full year, or as close to it as you can reasonably manage, because this virus can effectively hide in tissue the constant bombardment with the tx drugs is the only method that has proven successful.
Because UND does not mean virus free, it only means none can be detected in the blood, not that there are not hangers on, tucked away in some impervious tissue, that will reemerge in the spring, like those pesky gophers.
Did you ever go to Chuckie Cheese and play the game where you bang the gophers on the heads, and every time you bang one down in it's hole 2 more pop up?? Well that's the way this virus is, so to cut tx. too short is to risk having to go through it all again.
I was UND for over a year, and my virus still came back, so this geno1 is one tough bugger.
mb
i am a CC type and i have a relatively low viral load; 1.3Mil. my DR said that i would have to do the full 48 weeks regardless. I'm on SOC, getting ready for shot 4.
I wouldn't say that cindy got her rear spanked, I would say she got some friendly advice.
keep posting 2ya and it not getting posted....Looks like ya get yer rear spanked. ask mary4now, bout the trial think she is in the one you discuss...Hey open a Fb and come over and Ill show ya some more folks that I have friends with...They got good since of humors, some r de vets, some are or have been clinical trials. one or 2 b some type of nurse.. Gotta cook for The Nut " Whom lately has been doing plenty of wrong;-) ...To night she wants the chicken liver... Well gotta feed Nut. And see if my van burns to the ground...
Good advice from Trish. No need to be sorry Cindy. Keep reading, ask questions, get educated. It's the one thing no one can take away from you(education), and is key to beating the Disease (HCV). To further elaborate on the subject of education. Stress starts to play a role. Some people don't understand it. There are two types of stress. Positive and negative stress. Stress can be a good thing if it's positive. Ex. Positive stress, getting into a rhythm at work, getting stressed can keep you going. Major life events that could cause unhealthy stress are EX. death in the family, losing your job, Divorce, ETC. Getting educated about hepatitis c shouldn't be too stressful, everyone is here to show you the ropes to get through it.
Best to you, Cory
Best to you, Cory
Ithink the wonderful people in here are just trying to say:
Noone in here is a doctor and everything is just an opinion.
That the reason this forum is important is for basic medical questions but more for emotional support and friendship.
That you should put all your questions in one thread so that you can easily track what you have asked, make a list, and then make a composite in which to ask your doctor.
That is what I learned here. I have been here over six years and in the end the best advice I got was if you are not sure, get a second opinion by one of the worlds best heptos. I had to pay cash $600 as a single mother who had no extra cash at all - but it was the most importaNT $$$ i ever spent. I am alive. That says it all.
\Nygirl Deb from home (cant log in for some reason but it is me, I am not a troll);
Keep your thoughts organized put all your papers in a binder and keep all your q'sa one thread. It will make it be3tter for you.
(I found a binder and learning how to read all my testS resullts changed my LIFE. yOU SHOULD DO THAT TOO!)
DEB
Noone in here is a doctor and everything is just an opinion.
That the reason this forum is important is for basic medical questions but more for emotional support and friendship.
That you should put all your questions in one thread so that you can easily track what you have asked, make a list, and then make a composite in which to ask your doctor.
That is what I learned here. I have been here over six years and in the end the best advice I got was if you are not sure, get a second opinion by one of the worlds best heptos. I had to pay cash $600 as a single mother who had no extra cash at all - but it was the most importaNT $$$ i ever spent. I am alive. That says it all.
\Nygirl Deb from home (cant log in for some reason but it is me, I am not a troll);
Keep your thoughts organized put all your papers in a binder and keep all your q'sa one thread. It will make it be3tter for you.
(I found a binder and learning how to read all my testS resullts changed my LIFE. yOU SHOULD DO THAT TOO!)
DEB
Cindy, don't be sorry about that!! That's what this forum is for - we ALL had alot of questions and we ALL came here for information and learned from each other doing EXACTLY what you are doing. This is a place for people to come to get information and support on dealing with all the various aspects of dealing with their Hep C.
Treatment is not something anybody should take lightly - serious drugs, serious undertaking. We were all in your shoes at one point and now some of us are SVR. Thankfully we had this place to post our questions and concerns and get support. Post your questions and people will help where they can. NO worries AT ALL.
Trish
Treatment is not something anybody should take lightly - serious drugs, serious undertaking. We were all in your shoes at one point and now some of us are SVR. Thankfully we had this place to post our questions and concerns and get support. Post your questions and people will help where they can. NO worries AT ALL.
Trish
I am sorry that i ask so many questions.And I surely dont want to become a nuisance.I just have become so educated by you all that I find myself overwhelmed with the what -ifs and all the tx scenarios.Im sure it took you all time to get to know the things you all do.and I admire you all for that.Thanks for teaching me.You are ALL awsome !! cindy
Cindy, if you have any questions remaining on this that you need answered so that you can make a good decision, feel comfortable with the direction you're taking or allow you to advocate for yourself better with your treatment team and doctor, by all means - ASK. If anyone else reading this has questions for themselves as a result, by all means - ASK. We are not doctors (well..with one exception now) but we share experiences and sometimes it helps a great deal to bounce things around and with other people and we do it here all the time. If you find it beneficial to help give you greater clarity - that's what this forum is great for.
Good luck with sorting these things out for yourself as you go along.
Trish
Good luck with sorting these things out for yourself as you go along.
Trish
I'm just not sure how much more we can debate this issue than we already have.
At this point, I imagine the best thing to do is consult your doctor - get a second opinion from one of the top doctors in hepatitis and then do what they say.
There are no crystal balls here so you just have to go for it and then see what happens. Debating it over and over doesn't help the outcome at all.
At this point, I imagine the best thing to do is consult your doctor - get a second opinion from one of the top doctors in hepatitis and then do what they say.
There are no crystal balls here so you just have to go for it and then see what happens. Debating it over and over doesn't help the outcome at all.
All in all, with a 4 week RVR, SOC and a high VL, I'd resign myself to the fact that 48 weeks IS the best treatment for the shortest duration. The exception would be if you had an RVR and your side effects were debilitating enough to cause you to consider ending treatment sooner.
The other predictor of success is how soon you go UND when on treatment. *IF* it were available to me and if I were thinking of shortening duration at all or simply so that I would have as much information about my status as possible to make decisions throughout, I would get a PCR weekly for the first 4 weeks. That might seem extreme to some, but knowing WHEN you went UND in the first 4 weeks is good information.
Now, the logistics of actually GETTING weekly PCR's might not be realistic or possible for a number of people....just saying, if I could go at this the way I'd want to, that's what I'd do the first four weeks.
Trish
The other predictor of success is how soon you go UND when on treatment. *IF* it were available to me and if I were thinking of shortening duration at all or simply so that I would have as much information about my status as possible to make decisions throughout, I would get a PCR weekly for the first 4 weeks. That might seem extreme to some, but knowing WHEN you went UND in the first 4 weeks is good information.
Now, the logistics of actually GETTING weekly PCR's might not be realistic or possible for a number of people....just saying, if I could go at this the way I'd want to, that's what I'd do the first four weeks.
Trish
Not so much that the "American and European populations" are so different as that the euro-geno1 is slightly easier to cure than American geno1 - slightly different sub'sub'genotype. Drove docs crazy for years trying to figure out why European studies always came out slightly better than American ones.
The IL28 genotype is not yet being used to decide whether or not to treat a patient with HCV but it can be predictive of the likelihood of response. If a patient achieves a rapid viral response (non-detectable RNA at 4 weeks) in genotype 1 that is highly predictive of obtaining a sustained viral response. Although in Europe they have shortened the treatment period for those patients to 24 weeks it is still standard of care in the US to treat for 48 weeks. The American and European populations may not be similar enough to translate the European response to US patients. I would still recommend treatment for 48 weeks if an RVR is achieved.
BTW , I was running around with an elevated ALT on routine check up for years and no
doctor bothered to check that either , HHMMMMMMM
doctor bothered to check that either , HHMMMMMMM
One of the very first things I learned when I was dx in 2009 was that at all times you
are your own advocate. NOBODY knows you like you do.
Be proactive and learn as much about the disease and its treatment as possible.
When I go see any doctor I usually am prepared with very specific questions otherwise
I leave with more questions than I came with and end up having to go back.
are your own advocate. NOBODY knows you like you do.
Be proactive and learn as much about the disease and its treatment as possible.
When I go see any doctor I usually am prepared with very specific questions otherwise
I leave with more questions than I came with and end up having to go back.
Wonder why my hep dr hasnt done this?Hes got me going to all the other drs(psyche,eye,and cardiac) for clearance HHMMMMMMM cindy
Why can`t you go to your GP and get that checked along with your Vit D , B12 /Folate,
maybe Ferritin & Iron ,ect......?
It is a good idea to check those things because there is evidence they play a role
and it usually takes some time to correct it. Like if you are low on VitD for example
it takes a few months to built up.
maybe Ferritin & Iron ,ect......?
It is a good idea to check those things because there is evidence they play a role
and it usually takes some time to correct it. Like if you are low on VitD for example
it takes a few months to built up.
So there is nothing on recent labs that could be an indicator?Not gonna have lab work for 3 more months.
IR starts before diabetes as far as I know . You can have perfectly fine blood sugar levels and still be IR.An easy way to check it is on your next blood test include a fasting glucose and fasting insulin test from the same blood draw. You can calculate your Homa (IR) score from those 2 numbers
You mean diabetes?I can have that checked out.High viral load is also associated with the CC allele from what I read. Thanks for the info cindy
Something I wanted to mention the other day but forgot high viral load sometimes is associated with insulin resistance.
IR is a negative for INF tx.
This is something that you can find out relatively easily and possibly take care of before
starting tx.
IR is a negative for INF tx.
This is something that you can find out relatively easily and possibly take care of before
starting tx.
I mentioned to you what was said to me: paraphrasing; - Do you know how lucky you are to be a CC? Okay, then why are you doing a study when 24 wks is about to become the SOC for CC's?-
This was said to me by a PA at a well experienced research university but it was said without any substantive facts being given to me. That doesn't mean that there are no facts and if I were you, I'd follow the good advice you've received - do more research, question your doc, and carefully weigh your liver situation and how quickly you need/want to move forward.
Good luck on a difficult decision,
Susan
This was said to me by a PA at a well experienced research university but it was said without any substantive facts being given to me. That doesn't mean that there are no facts and if I were you, I'd follow the good advice you've received - do more research, question your doc, and carefully weigh your liver situation and how quickly you need/want to move forward.
Good luck on a difficult decision,
Susan
"I would like the best possible tx with shortest time. "
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Cindy...I think we can all relate to that. Unfortunately at this time there just is no 100% guaranteed answer for what is best for each person The questions for those of us treating currently and thinking of treating in the near future are certainly getting more diverse. I would imagine down the road it will be much clearer when all the data from current trials,data from the affect of having the different alleles.and most importantly what the data will show from the people that will be treating in the future on the new meds(in regards to efficacy,side effects and time frames for tx.etc.) all shows.
I guess this is sort of a long winded way of saying that ,right now there is no definitive right or wrong answer to the best course of action seeing as we are currently at the cutting edge of all that data
The fact remains ..you have very good predictors for success and you mentioned in your previous post that you are conferring with a knowlegable Hepa that has lots of experience with tx. as well as knowledge of results from trials.
You have received some great opinions from folks here ..combine that with the experts advice...make a decision and don"t look back.
Hope that helps some ..and doesn"t confuse further.
WILL
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Cindy...I think we can all relate to that. Unfortunately at this time there just is no 100% guaranteed answer for what is best for each person The questions for those of us treating currently and thinking of treating in the near future are certainly getting more diverse. I would imagine down the road it will be much clearer when all the data from current trials,data from the affect of having the different alleles.and most importantly what the data will show from the people that will be treating in the future on the new meds(in regards to efficacy,side effects and time frames for tx.etc.) all shows.
I guess this is sort of a long winded way of saying that ,right now there is no definitive right or wrong answer to the best course of action seeing as we are currently at the cutting edge of all that data
The fact remains ..you have very good predictors for success and you mentioned in your previous post that you are conferring with a knowlegable Hepa that has lots of experience with tx. as well as knowledge of results from trials.
You have received some great opinions from folks here ..combine that with the experts advice...make a decision and don"t look back.
Hope that helps some ..and doesn"t confuse further.
WILL
Sounds like you have some good imput on your question. Since you were planning on starting in May, why not wait a month and start in June with the new meds. Sounds like 24 weeks is pretty iffy with SOC and getting your best shot at SVR. You only want to do this once if you can help it. My 2 cents, use the new stuff and do 24 weeks. I think it's 12 weeks SOC +PI and the remainder 12 weeks with SOC. Someone correct me if I have that wrong. Not too certain on that.
Judy
Judy
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