Aa
extend treatment news / Albany
So I got the news today that after 46 weeks of Treatment for HEP C that the virus is still detectable in my blood.
I have genotype 1A and have been on Pegetron since September 2007, doing a 48 week course of weekly injections and 5 Ribavirin a day. My viral load was something like 1,141,000 PRIOR to treating, and think stage / grade was 1.5 & 2. After twelve weeks they tested the viral load, and I had achieved ‘close enough’ to a two log drop (which translate to a drop to a level of 10’s of thousands from millions?).
What this means is that I was to continue treating and push for a further drop to the desired “undetectable” level. After 46 weeks I did the viral load test last week, and was informed today that I am still detectable, although the viral load is still dropping, and that I am a “slow responder”.
Now what? I had asked my nurse ALL along, throughout the treatment, if we would be able to extend treatment IF I had not achieved the viral responses, and was repeatedly told that in her experience it is not feasible. She said that it was her experience that the doctors in Canada do not seem to go for extended treatment and that this was partly due to difficulty getting approval for an extended “section 8”: (read government approval for funding assistance). I referenced the practice that I had read about in the USA where treatment can be extended from 48 weeks to 72 weeks to improve the response and sustain it.
When I met with my doctor last week, this was the first thing he said- we may have to extend treatment if the virus is still detected, another 6 months he said, and ordered the blood work so there would not be an interruption in treating as my last ‘originally’ scheduled injection would have been this Friday August 8th.
So not I am here- days away from what I thought would be my last injection- sad that I have to go, yet determined to continue to battle. Besides the most obvious reasons for wishing treatment to be done, like an end to the terrifically horrible, cycling, various and ever present side effects I think I am more focussed on my the fact that I will have to delay getting my hair done – (lightened or red, whoo hoo,) and getting a new bed set- as mine has suffered horribly through this hell too!
So- what is the purpose of this post? Really, I think I just wanted to inform you all of what is up. There are a few more specifics that I hope to attain, and will actually post more direct questions to seek your experience, strength and hope in following posts, as I think this is more of a vent here.
Thank you all for listening, and for allowing me to share my news with you. Thank you all for being here for me throughout this treatment. Although I do not have the energy to post much, I do read and stay in contact with this forum and believe it has been a great source of comfort to know I am not alone.
Albany – from Toronto , ON
I have genotype 1A and have been on Pegetron since September 2007, doing a 48 week course of weekly injections and 5 Ribavirin a day. My viral load was something like 1,141,000 PRIOR to treating, and think stage / grade was 1.5 & 2. After twelve weeks they tested the viral load, and I had achieved ‘close enough’ to a two log drop (which translate to a drop to a level of 10’s of thousands from millions?).
What this means is that I was to continue treating and push for a further drop to the desired “undetectable” level. After 46 weeks I did the viral load test last week, and was informed today that I am still detectable, although the viral load is still dropping, and that I am a “slow responder”.
Now what? I had asked my nurse ALL along, throughout the treatment, if we would be able to extend treatment IF I had not achieved the viral responses, and was repeatedly told that in her experience it is not feasible. She said that it was her experience that the doctors in Canada do not seem to go for extended treatment and that this was partly due to difficulty getting approval for an extended “section 8”: (read government approval for funding assistance). I referenced the practice that I had read about in the USA where treatment can be extended from 48 weeks to 72 weeks to improve the response and sustain it.
When I met with my doctor last week, this was the first thing he said- we may have to extend treatment if the virus is still detected, another 6 months he said, and ordered the blood work so there would not be an interruption in treating as my last ‘originally’ scheduled injection would have been this Friday August 8th.
So not I am here- days away from what I thought would be my last injection- sad that I have to go, yet determined to continue to battle. Besides the most obvious reasons for wishing treatment to be done, like an end to the terrifically horrible, cycling, various and ever present side effects I think I am more focussed on my the fact that I will have to delay getting my hair done – (lightened or red, whoo hoo,) and getting a new bed set- as mine has suffered horribly through this hell too!
So- what is the purpose of this post? Really, I think I just wanted to inform you all of what is up. There are a few more specifics that I hope to attain, and will actually post more direct questions to seek your experience, strength and hope in following posts, as I think this is more of a vent here.
Thank you all for listening, and for allowing me to share my news with you. Thank you all for being here for me throughout this treatment. Although I do not have the energy to post much, I do read and stay in contact with this forum and believe it has been a great source of comfort to know I am not alone.
Albany – from Toronto , ON
The 72 week extended treatment studies assumed you were undectible between weeks 12 and 24, so they do not apply in your case.
A new study suggested 60 weeks after becoming UND but I don't think anyone was included who was still detectible after 48 weeks.
Dr. Dieterich in our professional forum said he treats patients for 48 weeks after being UND but again I don't think he would keep someone on treatment for as long as you are and still detectible, although you could post to him here in our professional forum and ask the doc directly: http://www.medhelp.org/forums/show/272
Personally, and especially given that you only have stage 1.5 liver damage, not to mention what you describe as bad side effects, I'd give serious thought to stopping now to cut your losses. At the very least, try to get another opinion or two from experienced liver specialists (hepatologists) before making any decisions to extend.
If I read your post correctly it appears you were not tested for viral load between weeks 12 and week 46? This alone would make me question the judgment of my medical team and seek a second opinion.
Wish I had something more positive to say and hope you and your docs make the right decisions moving forward.
-- Jim
A new study suggested 60 weeks after becoming UND but I don't think anyone was included who was still detectible after 48 weeks.
Dr. Dieterich in our professional forum said he treats patients for 48 weeks after being UND but again I don't think he would keep someone on treatment for as long as you are and still detectible, although you could post to him here in our professional forum and ask the doc directly: http://www.medhelp.org/forums/show/272
Personally, and especially given that you only have stage 1.5 liver damage, not to mention what you describe as bad side effects, I'd give serious thought to stopping now to cut your losses. At the very least, try to get another opinion or two from experienced liver specialists (hepatologists) before making any decisions to extend.
If I read your post correctly it appears you were not tested for viral load between weeks 12 and week 46? This alone would make me question the judgment of my medical team and seek a second opinion.
Wish I had something more positive to say and hope you and your docs make the right decisions moving forward.
-- Jim
Here's the study recently posted for what they call SLVR (super late virological responders) but what some other studies might in part term Null Responders:
http://www.jstage.jst.go.jp/article/internalmedicine/47/14/1301/_pdf
Perhaps someone can see if any of the SLVR's actually were still detectible at week 48. But even if they were and had good results, keep in mind that you are still detectible and according to that study would have to add 60 weeks to the date you became undetectible. Sounds like you really need some professional advice and not just from your current team.
http://www.jstage.jst.go.jp/article/internalmedicine/47/14/1301/_pdf
Perhaps someone can see if any of the SLVR's actually were still detectible at week 48. But even if they were and had good results, keep in mind that you are still detectible and according to that study would have to add 60 weeks to the date you became undetectible. Sounds like you really need some professional advice and not just from your current team.
that is exactly what i was wondering- why is this team so ... grrr .... NOT , **** i dunno. need someone to see, here near or in Toronto would be great. had a few more questions i had wanted to post, and will- but in morning when i am more able to clearly say what i am trying to say. thank you though- i was hoping to hear from you- and will follow u pon those links, post to the professinal, and GET SOME BLODDY NUMBERS from my ever elusive 'team'.
and although news is not great- i still feel hopeful ... and celcbrate 8 years 'clean' this friday- so am moving forward with a celebratory attitude, seeking more info and focussing on the positives :)
thank you, thank you, and thank you :)
Albany :)
and although news is not great- i still feel hopeful ... and celcbrate 8 years 'clean' this friday- so am moving forward with a celebratory attitude, seeking more info and focussing on the positives :)
thank you, thank you, and thank you :)
Albany :)
That's wonderful that you are 8 years clean and certainly worth celebrating in it's own right! If this doesn't work out, you should look forward to the newer drugs now in trial. Your medical tream seems more than "elusive" but absent for most of treatment given your lack of viral load testing. Maybe someone in Canada will suggest another doctor to see. If you can make it to the States we can suggest some here at least for a one-time consult. Good to see you posting again but wish the circumstances were different.
All the best,
-- Jim
All the best,
-- Jim
I would not push treatment any further. Some hep C patients can unfortunately have a minimal residual viral load all through treatment. Maybe that is what has happened in your case? Do you know what your viral load was at week 46?
It is horrible to hear that you did not have a viral load test done at least at week 24 to see that you were UND at that time. I understood Dr Dieterich in our professional forum to say that only those UND or detectable at <10 IU/ml at week 24 should continue treating. That sounds very reasonable to me, since there is only one study available that suggests continuing to treat if detectable at week 24.
If I were you, I would stop treating now. But I would want to know my end of treatment viral load, so this number can be used to determine viral response to SOC and choice of treatment in the future.
It is interesting that you only "almost" had a two-log drop at week 12. Maybe this in itself was a clue that treatment was not working as well as it should have.
I feel for you, but do hope that you in the future will reach SVR. And do celebrate being clean for 8 years. That is so great!
Za
It is horrible to hear that you did not have a viral load test done at least at week 24 to see that you were UND at that time. I understood Dr Dieterich in our professional forum to say that only those UND or detectable at <10 IU/ml at week 24 should continue treating. That sounds very reasonable to me, since there is only one study available that suggests continuing to treat if detectable at week 24.
If I were you, I would stop treating now. But I would want to know my end of treatment viral load, so this number can be used to determine viral response to SOC and choice of treatment in the future.
It is interesting that you only "almost" had a two-log drop at week 12. Maybe this in itself was a clue that treatment was not working as well as it should have.
I feel for you, but do hope that you in the future will reach SVR. And do celebrate being clean for 8 years. That is so great!
Za
At the very least you can look forward to detoxifying from the medication.
Demand copies of all your blood work.
Of particular interest is the twelve week PCR which was 'close enough' to a 2 log reduction.Let's see the numbers!
A 2 log drop is the bare minimum to justify continuation.
Don't remain a patient at whatever facility you have been attending as it would appear that are just shooting from the hip.
You'll win in the end if you are treated by a competent team.
Demand copies of all your blood work.
Of particular interest is the twelve week PCR which was 'close enough' to a 2 log reduction.Let's see the numbers!
A 2 log drop is the bare minimum to justify continuation.
Don't remain a patient at whatever facility you have been attending as it would appear that are just shooting from the hip.
You'll win in the end if you are treated by a competent team.
your doctors should be sued for malpractice for not giving you a test at VL 24 weeks! This is standard protocol and I have never heard of not having a test after 12 weeks. If this is the case they have caused you needless suffering when you could have stopped at 24 weeks if still detectable. if you are thinking about re-treating FIND A NEW DOCTOR ! Best of luck
We're in agreement she should stop, but Dr. Dieterich did not recommend across-the-board stoppage if not UND at week 24, here in answer to "Smaug"s question re extension: http://www.medhelp.org/posts/show/579284
That said, Dr. D. did not elaborate how long he's allow someone to continue without being UND.
Perhaps you are confusing his answer with Dr. Mitchell Shiffman's comments that I posted in Smaug''s original thread.
That said, Dr. D. did not elaborate how long he's allow someone to continue without being UND.
Perhaps you are confusing his answer with Dr. Mitchell Shiffman's comments that I posted in Smaug''s original thread.
There is much reference to what "Dr D." says. I would probably take what he has to say under consideration before anyone else but Dr. D is only one of many experts in this field and his viewpoints don't necessarily reflect those of other leading specialists. We have to keep that in mind. He is only one guide of many.
I have never heard of any reputable doctor (except for this post of Dr. D) letting someone who would not do a PCR at week 24 and advise to stop treatment if still positive.
Unfortunately these new little studies that suggest you might get to SVR after week 24 seem to fly in the face of the information that we've gone by for years - that the chance is close to zero.
some people (myself included) have done 72 weeks successfully BUT I was UND after week 12 but before 24.
To me, it does seem extremely negligent for a test not to have been done, especially since you were NOT UND at week 12 - which is crucial to determining the length of treatment.
I would completely advise you to go and get a second opinion immediately - I believe almost all of us would agree that anyone still detectible at week 46 has failed interferon/ribavirin treatment. i can't think of one doctor who would not agree on that.
A slow responder would have been way back when you were still not even hitting a two log drop at week 12.
Good luck. I certainly would not consider doing any further treatment at this time but rather stop regroup and then find a new course of action. This present one is just not working it would seem.
Unfortunately these new little studies that suggest you might get to SVR after week 24 seem to fly in the face of the information that we've gone by for years - that the chance is close to zero.
some people (myself included) have done 72 weeks successfully BUT I was UND after week 12 but before 24.
To me, it does seem extremely negligent for a test not to have been done, especially since you were NOT UND at week 12 - which is crucial to determining the length of treatment.
I would completely advise you to go and get a second opinion immediately - I believe almost all of us would agree that anyone still detectible at week 46 has failed interferon/ribavirin treatment. i can't think of one doctor who would not agree on that.
A slow responder would have been way back when you were still not even hitting a two log drop at week 12.
Good luck. I certainly would not consider doing any further treatment at this time but rather stop regroup and then find a new course of action. This present one is just not working it would seem.
Hi Jim,
sorry, you did not read the Arase-study correctly. They did not suggest 60 weeks after becomming UND. It depends... You should read the study again.
Albany, the chance to be a low-level-nonresponder is huge in your case, as Zazza wrote, or even a true nonresponder. I wouldn't continue. Please list the PCR-counts. What means "close enough" to a 2log drop?, what were the numbers?
Best, drofi
sorry, you did not read the Arase-study correctly. They did not suggest 60 weeks after becomming UND. It depends... You should read the study again.
Albany, the chance to be a low-level-nonresponder is huge in your case, as Zazza wrote, or even a true nonresponder. I wouldn't continue. Please list the PCR-counts. What means "close enough" to a 2log drop?, what were the numbers?
Best, drofi
Perhaps I didn't make it clear enough in my second post that I wasn't 100% sure of the study details. In any event, instead of critiquing my read and leaving us all wondering, why don't you enlighten us as to exactly what the study does suggest for someone who is still detectible at week 48 and for discussions sake becomes UND at week 60.
More relevant to you statment than the above scenario is the following from the study p 1304 per my link above: "..The fact that all 9 patients in LVR or SLVR group showed non-relapse after continuance of negative HCV RNA of >60 week during tx is important and impressive...."
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I should also add that I'm not a proponent of this study, nor do I think Albany should extend treatment, as I've stated before.
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I should also add that I'm not a proponent of this study, nor do I think Albany should extend treatment, as I've stated before.
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smaug48:
week 26 - <10 but detected
Dr. D:
"...72 should be plenty... that should work and then the fibrosis should reverse some too! "
The more I read of Dr. D, the less credence I give to his opinions (or at least his ability to express himself). To tell someone who was detected at week 26 *anything* "should work" is controversial at best.
Also sorta sceptical of his thumbs up to using bleach on HCV as opposed to autoclaving.
week 26 - <10 but detected
Dr. D:
"...72 should be plenty... that should work and then the fibrosis should reverse some too! "
The more I read of Dr. D, the less credence I give to his opinions (or at least his ability to express himself). To tell someone who was detected at week 26 *anything* "should work" is controversial at best.
Also sorta sceptical of his thumbs up to using bleach on HCV as opposed to autoclaving.
Hi,
sure, here are some thaughts.
The first important point in discussion about prolongation of treatment, which is a result from all the studies known so far, is the differentaition of low-level-nonresponders from slow-responders. It seems to make no sense at all to continue treatment, if someone is a nonresponder, even at a low level! Too bad, but to tell low-level-nonresponders from slow-responders depends on the limitations of the qualitative RNA-tests. For example: A test, which has a limit of 50 IU/ml, will show a "negative" even if there are 49 IU/ml in the blood. And even a test with a limit of 10 giving a "negative" result never tells you, if there are no copies at al, or just less than 10. This point is often misunderstood by patients.
The hepatologists try to find a point, where the probabilty of being a non responder instead of being a slowresponder is high, and this is UND or at least a drop less than 2log in week 12 or not UND at week 24.
So far we have the same information, right? A big disadvantage of the studies for prolongation was the rough graduation. It was a rough graduation to separate the UND in week 12 from the UND in week 24. Doesn't simple human intelligence tell you there will be a difference between the one , who is UND in week 13 and the one who is UND in week 23? Should they treat exactly the same time, 72 weeks? Why? A good theory seems to be, that the longer it needs to get rid of the virus in the blood, the longer it takes to get rid of the infected liver cells. The Arase-Study supports this.
Summary: the longer it takes to get "negative", the longer it takes to treat to STAY negative.
Thera are some limitations in prolongation of treatment: The costs, who should pay it?, the sides of IFN and Riba, who is able to tolerate such a long time? Hence nobody promotes prolongation of SOC for all, just the oposite, some are overtreated, eg. some with RVR and genotyp 2 or 3, but is a big step to individualise therapy more and more. This is, what the study from Arase et al. supports.
sure, here are some thaughts.
The first important point in discussion about prolongation of treatment, which is a result from all the studies known so far, is the differentaition of low-level-nonresponders from slow-responders. It seems to make no sense at all to continue treatment, if someone is a nonresponder, even at a low level! Too bad, but to tell low-level-nonresponders from slow-responders depends on the limitations of the qualitative RNA-tests. For example: A test, which has a limit of 50 IU/ml, will show a "negative" even if there are 49 IU/ml in the blood. And even a test with a limit of 10 giving a "negative" result never tells you, if there are no copies at al, or just less than 10. This point is often misunderstood by patients.
The hepatologists try to find a point, where the probabilty of being a non responder instead of being a slowresponder is high, and this is UND or at least a drop less than 2log in week 12 or not UND at week 24.
So far we have the same information, right? A big disadvantage of the studies for prolongation was the rough graduation. It was a rough graduation to separate the UND in week 12 from the UND in week 24. Doesn't simple human intelligence tell you there will be a difference between the one , who is UND in week 13 and the one who is UND in week 23? Should they treat exactly the same time, 72 weeks? Why? A good theory seems to be, that the longer it needs to get rid of the virus in the blood, the longer it takes to get rid of the infected liver cells. The Arase-Study supports this.
Summary: the longer it takes to get "negative", the longer it takes to treat to STAY negative.
Thera are some limitations in prolongation of treatment: The costs, who should pay it?, the sides of IFN and Riba, who is able to tolerate such a long time? Hence nobody promotes prolongation of SOC for all, just the oposite, some are overtreated, eg. some with RVR and genotyp 2 or 3, but is a big step to individualise therapy more and more. This is, what the study from Arase et al. supports.
I think we're pretty much in agreement with what you said but I'm still unclear why you state that adding 60 weeks of UND is not supported by the study in question for SLVR's per study data and analysis. That's pretty much what I was saying -- that and I didn't see any support for this thesis beyond 48 weeks of still being detectible. The other issue which you barely touched on -- and more subjective -- is when does it make sense for someone to extend tx to "x" weeks (even with "decent" odds) as opposed to cutting losses and perhaps tx with better drugs in the future. If I had minimal liver damage and was told I would be cured with 72 weeks of tx, I'd pass, thank you. I know others may disagree.
Studies basically show that if you're UND by week 24, then treating 72 weeks is reasonable. So why is it such a leap that Dr. D. recommends treating 72 weeks for someone like Smaug who was UND to 10 IU/ml at week 24 and UND to the limit of his tests at week 28? Don't remember the sensitivity used in the 27 week trials but my guess is that being UND to 10 IU/ml would have put him in the 72 week extension group. As to the disinfectant thing, Dr. D. was not referring to office procedures (autoclaving) but to someone's earrings where an autoclave would not be at hand. Obviously the "Expert" Doc format has significant limitations, but I still find it very enlightening.
I have read, in various places, that there is a well-respected hepatologist practing there in Toronto. Is involed in research, trials and direct patient Name is Jenny Heathcote (I think that's the spelling). You can google for more info.
Hi Jim,
to extend treatment or to start treatment at all is depending on the individual situation. I am not able to advice people to treat, or to treat longer, or to wait for the silver bullet of new substances. Especially not in a virtual forum. Doesn't such an advice depend on many factors, not available for you or me sitting in front of the PC instead of the patient? I just wanted to provide some new information about the study from Arase and individualisation of treatment. If you think it is not worse to notice the study, it is up to you.
I do not want to win the discussion,
all the best, drofi
to extend treatment or to start treatment at all is depending on the individual situation. I am not able to advice people to treat, or to treat longer, or to wait for the silver bullet of new substances. Especially not in a virtual forum. Doesn't such an advice depend on many factors, not available for you or me sitting in front of the PC instead of the patient? I just wanted to provide some new information about the study from Arase and individualisation of treatment. If you think it is not worse to notice the study, it is up to you.
I do not want to win the discussion,
all the best, drofi
I think "not want(ing) to win the discussion" is a bit of a red herring here. I'm just trying to answer your original post and put out some information. Your original post where you suggested I hadn't read the study properly regarding extending tx for 60 weeks past UND for SLVRs.
I conceded that maybe I hadn't, and asked you for clarification/correction a couple of times but so far I haven't received any, so I'm starting to assume that maybe I was correct to start with.
And didn't you just tell Smaug "I wouldn't continue" -- so much for not interjecting your "advice" in a "virtual forum". And no, I don't think "it is not worse to notice the study" or I wouldn't have posted it to start with. That doesn't mean I can't commen/give personal opinions on what I see are it's limitations.
But back to the "advice" thing re "to treat or not" and extending. When you see so many posts talking tx protocols and stats *without* discussing the risk/reward equation and the option not to treat or not to extend -- don't you think it important that someone, anyone, remind people that just because a study says your chances of SVR are better with 72 weeks that doesn't mean that everyone should extend? I think we can give advice/opinions in a general or "what I might do" scenario and give people here credit enough to factor in their own individual "factors".
You can have the last word if you want.
-- Jim
I conceded that maybe I hadn't, and asked you for clarification/correction a couple of times but so far I haven't received any, so I'm starting to assume that maybe I was correct to start with.
And didn't you just tell Smaug "I wouldn't continue" -- so much for not interjecting your "advice" in a "virtual forum". And no, I don't think "it is not worse to notice the study" or I wouldn't have posted it to start with. That doesn't mean I can't commen/give personal opinions on what I see are it's limitations.
But back to the "advice" thing re "to treat or not" and extending. When you see so many posts talking tx protocols and stats *without* discussing the risk/reward equation and the option not to treat or not to extend -- don't you think it important that someone, anyone, remind people that just because a study says your chances of SVR are better with 72 weeks that doesn't mean that everyone should extend? I think we can give advice/opinions in a general or "what I might do" scenario and give people here credit enough to factor in their own individual "factors".
You can have the last word if you want.
-- Jim
Is involed in research, trials and direct patient Name is Jenny Heathcote (I think that's the spelling).
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I think this is the person that Veggie went to that said that all skinny people achieve SVR ;) Do you remember those days they just flashed before my eyes.
Still believe that it's a go until week 24 and that is the cut off and defining factor myself. How many weeks treatment would be enough - after a while unless you are stage 4 and working on maintenance of your liver enzymes.....it gets toa point where it ludicrous to continue (and yes I did treat for 72 but was und by 24 had I not been I would have definitely stopped and tried different drugs or protocol, if something doesn't work it doesn't work). Losing a thyroid and all the other life long problems that I"ve accumulated from one course of treatment I can say matter of factly - these meds might cure one problem and lead to long term problems that are much worse. Just not worth it after the 72 point that is defined in Sanchez Tapias. Not without a MUCH greater study done than are currently out there.
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I think this is the person that Veggie went to that said that all skinny people achieve SVR ;) Do you remember those days they just flashed before my eyes.
Still believe that it's a go until week 24 and that is the cut off and defining factor myself. How many weeks treatment would be enough - after a while unless you are stage 4 and working on maintenance of your liver enzymes.....it gets toa point where it ludicrous to continue (and yes I did treat for 72 but was und by 24 had I not been I would have definitely stopped and tried different drugs or protocol, if something doesn't work it doesn't work). Losing a thyroid and all the other life long problems that I"ve accumulated from one course of treatment I can say matter of factly - these meds might cure one problem and lead to long term problems that are much worse. Just not worth it after the 72 point that is defined in Sanchez Tapias. Not without a MUCH greater study done than are currently out there.
Jim, you are correct, I misinterpreted Dr D. I must have read in my own opinion in these words: "As long as you get to < 10 and stay there I would generally treat for 48-52 weeks (...) after they become undetectable." I interpreted it as being "as long as you get to < 10" AT WEEK 24 "and stay there". My mistake.
Trinity, I totally agree with you that Dr D is "only one guide of many".
Trinity, I totally agree with you that Dr D is "only one guide of many".
Hi Albany, I saw your post this morning and I haven't had time to answer, working 12-14 hour days and then some lately. I'd recommend you contact the Liver Clinic at Toronto Western and while that is where Dr. Jenny Heathcote is, so is Dr. Wong and you might want to give him a spin instead. He is my preferred doc there and I have been under the care of three hepatologists there in various ways. I find him to be very knowledgable and doesn't mind answering patient questions. He's known to be the "aggressive" doctor when it comes to treating .. so a second opinion from him would perhaps be very useful with regards to stopping treatment or continuing. Here's his link: http://www.uhn.ca/Find_a_Doctor/results.asp?MDid=803 You can also look up Dr. Heathcote in the same way. Gotta admit .. I'm kinda lukewarm on Dr.Heathcote.
I haven't had time to read up through everything. All I can say is that I find it concerning to read that you're on treatment at 46 weeks and still detectible and that there was no 24 week PCR. When DID they give you PCR's? SOC is usually that if you're still detectible by 24 weeks, then your chances decrease so low as to make more sense to discontinue.
I would second the others, that stopping treatment at this point makes more sense based on what is known about success rates when viral load still exists at 24 weeks, let alone 46 weeks when treatment regimen is 48!! Particularly with your level of liver damage, you've got a bit of breathing room to step back and regroup and investigate your options. I'd like to see you with a different medical team who is very up to date on treatment protocols and what's current.
However. That's my opinion only. I hope you hook up with a good hepatologist asap for a second look at your situation. Good luck, Albany. If I can support you in any way, please let me know.
Take care.
Trish
Trish
I haven't had time to read up through everything. All I can say is that I find it concerning to read that you're on treatment at 46 weeks and still detectible and that there was no 24 week PCR. When DID they give you PCR's? SOC is usually that if you're still detectible by 24 weeks, then your chances decrease so low as to make more sense to discontinue.
I would second the others, that stopping treatment at this point makes more sense based on what is known about success rates when viral load still exists at 24 weeks, let alone 46 weeks when treatment regimen is 48!! Particularly with your level of liver damage, you've got a bit of breathing room to step back and regroup and investigate your options. I'd like to see you with a different medical team who is very up to date on treatment protocols and what's current.
However. That's my opinion only. I hope you hook up with a good hepatologist asap for a second look at your situation. Good luck, Albany. If I can support you in any way, please let me know.
Take care.
Trish
Trish
Thank you all for your advice / support / and referrals. FINALLY got some numbers, and am here hoping someone get help me to translate. I will also post this query as a separate thread ... in case this does not get bumoed back up.i was told that my pre=Tx load was 1, 141, 000 ... and now i have the 'formula /weirdness' numebrs, for all the viral load tests. i have NO idea how to calculate- make it a number i can understand / compare- math is NOT my frist langauage, nor do i like it much. i will post as i reda it, and hope SOMEONE can help .... by the way- you ALL rock!
(dec 13 2006) pre-tx = 2.14 E+6 IU/mL
(oct 16/07) 4 week = only says virla RNA is > 600 I.U. / mL
(dec 12 /07) 12 week = 5.52 E+4 IU/mL
(July 23/08) FINAL 46 weeks = 1.93 E+6 IU/mL
the final was taken two weeks prior to the finish- to see IF detected- to decide IF tx to be extended.
ANYONE have any idea how to run these numbers / code thingamjiugs to something i can compare
or any thing?
thanks again all, i am truly gratful for all your supprt and help, and have read ALL the posts very carefully, and appreciate all your informed / educated / expereinced input.
I have been so sick n depressed/ just overwhlemed to repond.
Hearing what you all said was what i had been hearing in my heart / head already- but wasn't ready to listen to me.
holy hell, you know what- i sound crazier thaan i am when i say it that way-
oh well, i didn't answer myself, and that is what counts right ---- anyways
i eagerly anticpate ANY reposnse, pr dreiction to the code breaker formula
Thanks
Albany S
Durham ON
(dec 13 2006) pre-tx = 2.14 E+6 IU/mL
(oct 16/07) 4 week = only says virla RNA is > 600 I.U. / mL
(dec 12 /07) 12 week = 5.52 E+4 IU/mL
(July 23/08) FINAL 46 weeks = 1.93 E+6 IU/mL
the final was taken two weeks prior to the finish- to see IF detected- to decide IF tx to be extended.
ANYONE have any idea how to run these numbers / code thingamjiugs to something i can compare
or any thing?
thanks again all, i am truly gratful for all your supprt and help, and have read ALL the posts very carefully, and appreciate all your informed / educated / expereinced input.
I have been so sick n depressed/ just overwhlemed to repond.
Hearing what you all said was what i had been hearing in my heart / head already- but wasn't ready to listen to me.
holy hell, you know what- i sound crazier thaan i am when i say it that way-
oh well, i didn't answer myself, and that is what counts right ---- anyways
i eagerly anticpate ANY reposnse, pr dreiction to the code breaker formula
Thanks
Albany S
Durham ON
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