Aa
no question, just sharing
Went to the hepa Dr yesterday to discuss treatment. He wants me to treat as soon as I can make a decision. I walked in thinking I had my mind made up to treat with VIC triple therapy. But now I'm more confused than ever. He said he would not choose VIC. He said VIC only has a 65% success rate, while INC is 85%. He said VIC will eventually be taken off the market. I told him my fears of taking Incivek and he understood, but said the odds of curing with INc are so much better. But he said if he were me, he would go into the all oral trial. It's in phase 2. And I would either treat for 12 or 24 weeks. He said the people in this trial are responding extremely well, some people becoming UND in days. Also he said there are almost no side effects. He said he thinks the trial should be my first choice. He said second choice would be Incivek. They are also doing a trial for Incivek that is in phase 4. So I would get treatment for free either way. Lastly he said if I'm stil bent on treating with VIC then its my choice and he will treat me with it. But I will have to go thru my insurance and pay. This is a hard choice!!
I am not sure why asking Summer what is troubling her about her doctor has been misconstrued to mean that she should blindly follow his advice. This was not implied in the question at all.
Published studies are a good starting point but clinical experience combined with expert medical knowledge (including the studies) is surely so much better. I have worked as a translator of medical studies in the past. Having met the authors, my respect for them is tempered by a knowledge of their own humanity, and the rules of their profession.
It is possible that some of the details about Victrelis reported by Summer here have been mixed up. When you are really worried and have a lot of information to take in it is easy to miss details. The best way to sort that out is to check with her doctor.
Although "Triple" may be more effective at viral eradication than "Combo" in certain cases, it is complex and costly. It ties up medical resources since it requires a lot of monitoring and expert attention when adverse events occur. There are far too many HCV sufferers in the world for them all to be treated in such a resource intensive manner. Therefore, it is logical to assume that simpler treatments will supersede Triple as soon as they become available. There is currently good reason for optimism about simpler treatments which are easier for patients to tolerate and for medical practitioners to administer. Following up on this and other forums you can see that more than one company has drugs which have cured HCV without IFN. In a few more months we will know much more. My specialist, also an HCV treatment researcher and professor at a teaching hospital, said that this is one of the most exciting times of his career.
Regarding studies, it is logical to assume that when a treatment is conducted on carefully selected subjects and administered in controlled conditions, that results could vary under differing conditions. Trials by nature need to be careful to exclude people who are unlikely to be capable of tolerating an entire course of procedures. If a significant number of the study subjects quit, it doesn't bode well for the research. That observation does not make the trial wrong, it just emphasizes the value of clinical experience.
It is easy to forget that there are real people behind these forum posts. I see many people post with the best of intentions seemingly completely misinterpreted. We don't all communicate effectively all of the time. Some information posted is incorrect, and sometimes not. It's just an Internet forum though - an information resource to be utilized with care. I think that perspective is worth consideration.
I have no intention of offending people currently treating. I respect people's decisions. In the case of the all orals though, I am baffled as to why people interpret exciting news of promising new treatments as a bad thing. It's good for everybody who suffers from HCV.
We are not the gatekeepers of other people's decision-making. Nor can we rightly be the arbiters of others' knowledge. The best we can do is post useful information, and attempt to provide helpful answers and support if we can.
Summer, I think you need to be able to trust the doctor you choose to treat you. My personal opinion is that yours sounds good, but I haven't met him. Only you can decide that one. Best wishes.
Published studies are a good starting point but clinical experience combined with expert medical knowledge (including the studies) is surely so much better. I have worked as a translator of medical studies in the past. Having met the authors, my respect for them is tempered by a knowledge of their own humanity, and the rules of their profession.
It is possible that some of the details about Victrelis reported by Summer here have been mixed up. When you are really worried and have a lot of information to take in it is easy to miss details. The best way to sort that out is to check with her doctor.
Although "Triple" may be more effective at viral eradication than "Combo" in certain cases, it is complex and costly. It ties up medical resources since it requires a lot of monitoring and expert attention when adverse events occur. There are far too many HCV sufferers in the world for them all to be treated in such a resource intensive manner. Therefore, it is logical to assume that simpler treatments will supersede Triple as soon as they become available. There is currently good reason for optimism about simpler treatments which are easier for patients to tolerate and for medical practitioners to administer. Following up on this and other forums you can see that more than one company has drugs which have cured HCV without IFN. In a few more months we will know much more. My specialist, also an HCV treatment researcher and professor at a teaching hospital, said that this is one of the most exciting times of his career.
Regarding studies, it is logical to assume that when a treatment is conducted on carefully selected subjects and administered in controlled conditions, that results could vary under differing conditions. Trials by nature need to be careful to exclude people who are unlikely to be capable of tolerating an entire course of procedures. If a significant number of the study subjects quit, it doesn't bode well for the research. That observation does not make the trial wrong, it just emphasizes the value of clinical experience.
It is easy to forget that there are real people behind these forum posts. I see many people post with the best of intentions seemingly completely misinterpreted. We don't all communicate effectively all of the time. Some information posted is incorrect, and sometimes not. It's just an Internet forum though - an information resource to be utilized with care. I think that perspective is worth consideration.
I have no intention of offending people currently treating. I respect people's decisions. In the case of the all orals though, I am baffled as to why people interpret exciting news of promising new treatments as a bad thing. It's good for everybody who suffers from HCV.
We are not the gatekeepers of other people's decision-making. Nor can we rightly be the arbiters of others' knowledge. The best we can do is post useful information, and attempt to provide helpful answers and support if we can.
Summer, I think you need to be able to trust the doctor you choose to treat you. My personal opinion is that yours sounds good, but I haven't met him. Only you can decide that one. Best wishes.
Always amazes me how some can hype drugs that really have no data for geno type 1 and at the same time discount drugs that has been proved to have a very high svr rate"
I have noticed this too Candyman. Very bizarre advice it appears to me. I would not take it, not in a million years it's just not the well informed choice.
I have noticed this too Candyman. Very bizarre advice it appears to me. I would not take it, not in a million years it's just not the well informed choice.
Thanks everyone for all the advice! I really just need to take some time to think. I need to write the pros and cons of all my options
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This was the last thing the OP posted.
Possibly just letting her take the time she needs to work out with her doctor what she is going to do would be best rather than continuously posting about "how amazing a drug is" etc etc.
Summer. take all the time you need ....do your research and good luck..
Will
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This was the last thing the OP posted.
Possibly just letting her take the time she needs to work out with her doctor what she is going to do would be best rather than continuously posting about "how amazing a drug is" etc etc.
Summer. take all the time you need ....do your research and good luck..
Will
Oh, did I mention that when the lady I referred to in my last post and I dropped to double digits (I went from 12 million) in 72 hours, we were only on one drug? We had a lead in with PSI 7977. Pretty amazing stuff huh?
Summer, I thought I recalled your writing that you are stage 2 in liver disease and Gt 1a? Can't quite recall. I was just reviewing my note from another participant in this trial who was stage 2 and gt 1a. She is the one who drove so far to get to the site that had this trial. She went UND between Day 11 and Day 14 just like I did. We both dropped to double digits in our VL in 72 hours.
Is there something wrong with telling people you need to be away from the shop on private family business? Actually, I have to tell you I am grateful that there are people like you. I was probably the last to recruit at my site because they cut off recruitment after me. One person was caught in the middle of screening and had to be refused. But the coordinator told me that they lost some potential participants because they were concerned about the schedule. Whew! Was I lucky they turned it down.
Is there something wrong with telling people you need to be away from the shop on private family business? Actually, I have to tell you I am grateful that there are people like you. I was probably the last to recruit at my site because they cut off recruitment after me. One person was caught in the middle of screening and had to be refused. But the coordinator told me that they lost some potential participants because they were concerned about the schedule. Whew! Was I lucky they turned it down.
I think the problem is this woman wants to do tx, doesn't want to stop work, doesn't want to tell her employers or fellow workers about her doing tx.
She's a hair stylist.
Personally, it seems unrealistic to think she can do triple or even SOC and keep things a secret.
Whether she'd have the same problems with the orals, is, not really known.
My advice to her to go for the orals is based on her unwillingness to tell her employers about her condition.
Sad that people still feel this way about hep C.
She's a hair stylist.
Personally, it seems unrealistic to think she can do triple or even SOC and keep things a secret.
Whether she'd have the same problems with the orals, is, not really known.
My advice to her to go for the orals is based on her unwillingness to tell her employers about her condition.
Sad that people still feel this way about hep C.
Always amazes me how some can hype drugs that really have no data for geno type 1 and at the same time discount drugs that has been proved to have a very high svr rate, i guess if its your drug then they don't cherry pick but if it a proven drug with several years of trials the results are misleading... Hmmm, very interesting.
"Your doc may be commenting on recent observations."
Sorry but not possible, these new drugs have not been on the market long enough, are you saying this data is wrong? Sorry don't buy that and neither would the FDA. As for "just go with doctors advice". Oh my.
Sorry but not possible, these new drugs have not been on the market long enough, are you saying this data is wrong? Sorry don't buy that and neither would the FDA. As for "just go with doctors advice". Oh my.
a) Put yourself in your doctor's hands and do what he tells you.
b) Do your own research. Make a choice. Live with your choice.
willbb and can-do-man have pointed out some reasons why I would go with b).
Everyone's tx experience is different. Until genetic testing improves to the point where they can give 100% answers, we have to go with the best info available.
Good Luck with it.
"If you choose not to decide, you still have made a choice."
b) Do your own research. Make a choice. Live with your choice.
willbb and can-do-man have pointed out some reasons why I would go with b).
Everyone's tx experience is different. Until genetic testing improves to the point where they can give 100% answers, we have to go with the best info available.
Good Luck with it.
"If you choose not to decide, you still have made a choice."
I personally think that for some of us who are terribly frightened and anxious, it is easy to mishear our doctors.
Your doctor might not be misinformed. The information published for clinical trials is gathered in a controlled environment with selected subjects and very high standards of care. Once a treatment is released for wider use other factors come into play and success rates can change. Your doc may be commenting on recent observations. If you are really concerned I think you should ask him to explain why he said it. Honestly he sounds like he would have more up to date info than most people on these forums. We usually only get to find out after the studies are published.
Sandy, from reading this thread and previous ones posted by Summer it appears that her doctor has discussed both conventional and new treatments with her. The fact that he is offering her a trial suggests that he is involved in research. In my personal experience the researchers are the most up-to-date. The advice that Summer has told us about from him seems good. He has recommended a benign treatment with a high barrier to resistance and a very promising profile overall. Those were my reasons for asking her why she didn't want to take his advice in this case.
In most circumstances, I think you are absolutely right. Become very informed from multiple sources. Unfortunately there really are a lot of doctors who haven't kept up with the latest information and don't offer the best advice. I got burned myself. I wasn't aware of just how much variation there can be in skill.
In most circumstances, I think you are absolutely right. Become very informed from multiple sources. Unfortunately there really are a lot of doctors who haven't kept up with the latest information and don't offer the best advice. I got burned myself. I wasn't aware of just how much variation there can be in skill.
Thanks everyone for all the advice! I really just need to take some time to think. I need to write the pros and cons of all my options. I am overwhelmed! I really dont feel like I can tell my employer the truth. I would have to find something else to say. I wonder if my dr could write me some sort of drs note saying I have to be off work for 2 weeks for medical reasons. I dont know...my boss would stil want to know why. Also I am troubled with what my hepa dr said about the Vic. He is a hepatitis specialist. He is head of the entire liver disease dept at Mercy Medical in Baltimore. He is the one who oversees all the study trials for hep at the hospital. He is an expert. Yet it seems he is misinformed about the Victrelis. That bothers me...
Summer, my older daughter works in a high end hair salon, so I know some of your concerns. The time spent on your feet and the pressure on your arms and back can be challenging on a normal day, without being on trt. Besides the owners daily, you'll have clients coming back in every month or so who will begin to notice a change and may ask questions.
I'm fortunate in my career that I don't have a tremendous amount of daily interaction and need to be up for conversation/interaction with clients on a daily basis. I just returned from a conference, making several presentations to large groups, but I can muster the energy and pull it together for short periods, but would find it hard to be up all day, every day.
This is a very person decision and you have some good options to consider. I'm a bit concerned that your doctor doesn't appear to be giving accurate information based on the studies we've been reading on this forum for months. However, with the information you've provided and understanding your job to some degree, I'd be tempted to go the oral route due to the side effects you'll likely be challenged with either Inc or Vic. This is only based on reading comments on the forum, not on personal experience since I'm on Inf/Riba. I'd research the oral trial very thoroughly before making any decisions. Good luck in sorting this out.
I'm fortunate in my career that I don't have a tremendous amount of daily interaction and need to be up for conversation/interaction with clients on a daily basis. I just returned from a conference, making several presentations to large groups, but I can muster the energy and pull it together for short periods, but would find it hard to be up all day, every day.
This is a very person decision and you have some good options to consider. I'm a bit concerned that your doctor doesn't appear to be giving accurate information based on the studies we've been reading on this forum for months. However, with the information you've provided and understanding your job to some degree, I'd be tempted to go the oral route due to the side effects you'll likely be challenged with either Inc or Vic. This is only based on reading comments on the forum, not on personal experience since I'm on Inf/Riba. I'd research the oral trial very thoroughly before making any decisions. Good luck in sorting this out.
***Your in this trial now? How is it going? The nurse did say if I don't respond, they will add interferon, which will add an extra 24 weeks to the treatment. The trial does have a lot of positives. And yes, they will pay me $ to do the trial. But what if down the road they find out these drugs cause later problems. I'm scared to take drugs that aren't approved. ****
Summer, you have been posting for some time now and it feels to me that you are scared to take drugs that aren't approved and also scared to take the drugs that are approved. No one can really help you with this one. There is no predicting just what will happen in the future. However, you have read posts by gonnabhepcfree and myself and the others that are taking these drugs 7977 and 790052 and we have been saying over and over there are few if any side effects right now.
Life does not hold any guarantees. Because of our infections we all have to make decisions about treatment that we would really rather not have to make. Just try to clear anxieties away so that you can make the best one for yourself . . . one that you can live with whatever the outcome may be.
Summer, you have been posting for some time now and it feels to me that you are scared to take drugs that aren't approved and also scared to take the drugs that are approved. No one can really help you with this one. There is no predicting just what will happen in the future. However, you have read posts by gonnabhepcfree and myself and the others that are taking these drugs 7977 and 790052 and we have been saying over and over there are few if any side effects right now.
Life does not hold any guarantees. Because of our infections we all have to make decisions about treatment that we would really rather not have to make. Just try to clear anxieties away so that you can make the best one for yourself . . . one that you can live with whatever the outcome may be.
After experiencing the old SOC and reading about everyone's experiences on triple I would say:
1. It is harder to hide the treatment while on triple
2. You might have to take more than two weeks off on triple.
3. When I treated with IFN and RIBA it made my eyesight go blurry. Sharp hairdressers scissors and blurry eyesight might be a bit of a worry.
4. People on iFN and RIBA often become irritable. You might snap at your customers which wouldn't go down well.
It is true that the long term effects of a new trial drug might not all be apparent yet. Triple has known risks of long term health issues. Whatever you choose there are risks. Not doing anything is a risk eventually. I wouldn't leap into any old trial, but an all orals trial with PSI7977 seems like a better bet than triple to me in your case. Lucky you to have a choice!
Taking two weeks off to deal with a private family matter is reasonable, responsible to your employer, and helps you too. You can tell them that the job is really important to you and you would not ask for leave like this if it wasn't a very serious matter. If you do the all orals trial you might not need to say anything more than that.
If it was me I wouldn't say that I had a long term serious illness unless there was no choice. Employers aren't always sympathetic. If you say you have a blood disease they might be worried and ask for more information in case it is infectious. They might worry about customer liability.
Good luck Summer.
1. It is harder to hide the treatment while on triple
2. You might have to take more than two weeks off on triple.
3. When I treated with IFN and RIBA it made my eyesight go blurry. Sharp hairdressers scissors and blurry eyesight might be a bit of a worry.
4. People on iFN and RIBA often become irritable. You might snap at your customers which wouldn't go down well.
It is true that the long term effects of a new trial drug might not all be apparent yet. Triple has known risks of long term health issues. Whatever you choose there are risks. Not doing anything is a risk eventually. I wouldn't leap into any old trial, but an all orals trial with PSI7977 seems like a better bet than triple to me in your case. Lucky you to have a choice!
Taking two weeks off to deal with a private family matter is reasonable, responsible to your employer, and helps you too. You can tell them that the job is really important to you and you would not ask for leave like this if it wasn't a very serious matter. If you do the all orals trial you might not need to say anything more than that.
If it was me I wouldn't say that I had a long term serious illness unless there was no choice. Employers aren't always sympathetic. If you say you have a blood disease they might be worried and ask for more information in case it is infectious. They might worry about customer liability.
Good luck Summer.
Interesting to me that doctors are so misinformed on the new drugs. And Odin.. just go with doctors advice? In my experience and many others on this forum most doctors are not experienced with treating Hep C and have even less experience with the PI's. So just listen to the doctor? No way.. do your own research, be an advocate for yourself and your disease. If you study the trial information as can do and willbb mention above you will see that the two drugs have nearly the same SVR rate, and having just finished Vic, I can attest that the sides are minimal compared to what some folks going thru INC are experiencing.
i think i would write down some notes...line items...then go right to the owners in private....and tell them you have to be honest about something and could you go over it with them after work...tell them you wrote down notes to make sure you explained everything right.....every employer respects honesty....i'll bet they'll work with you on this... good luck....billy
I like Pooh's idea.
You can even play somewhat dumb.
Say, " I don't quite understand, but the doctor says I need to do this treatment and there is a strong likelihood it will take care of the problem."
Then as things go along, and they ask, just tell them it's working.
Say you don't care about the details or can't understand the medical terms, or even just," I really don't like talking about it."
Then change the subject.
Good luck with whatever you decide.
You can even play somewhat dumb.
Say, " I don't quite understand, but the doctor says I need to do this treatment and there is a strong likelihood it will take care of the problem."
Then as things go along, and they ask, just tell them it's working.
Say you don't care about the details or can't understand the medical terms, or even just," I really don't like talking about it."
Then change the subject.
Good luck with whatever you decide.
Summer.. I won"t comment on the trial vs. treating clinically as there are pros and cons to both.,however I would just address what your doctor mentioned about doing VIc.
The following is from data from the trials on both Inci. & Vic. and the article aslo quotes from Dr. Shiffman ,,one of the foremost Hepas"s in the U.S.
I know you happen to have the CC allele and all the data states that with either Vic. or Inci. your chance of success would be between 90 - 95 % treating for 24 weeks.I have linked the entire article below ,if you are interested.
Also in the article below it compares side effects and different paradigms of each treatment. If you can not pick up this link ,,let me know and I will post it differently..
Good luck..
Will
http://onlinelibrary.wiley.com/doi/10.1111/j.1478-3231.2011.02718.x/full
For treatment naive patients, the rates of SVR appear very similar between Boceprevir and Incivek in patients who achieve a RVR (89–96%) .
Patients who have cytosine-cytosine (CC) at a specific site within this gene are highly sensitive to interferon [20, 21, 22]. Nearly 80% of these patients achieve RVR, can be treated for a shorter duration with either boceprevir or telaprevir-based triple therapy and enjoy SVR rates that exceed 90%
The following is from data from the trials on both Inci. & Vic. and the article aslo quotes from Dr. Shiffman ,,one of the foremost Hepas"s in the U.S.
I know you happen to have the CC allele and all the data states that with either Vic. or Inci. your chance of success would be between 90 - 95 % treating for 24 weeks.I have linked the entire article below ,if you are interested.
Also in the article below it compares side effects and different paradigms of each treatment. If you can not pick up this link ,,let me know and I will post it differently..
Good luck..
Will
http://onlinelibrary.wiley.com/doi/10.1111/j.1478-3231.2011.02718.x/full
For treatment naive patients, the rates of SVR appear very similar between Boceprevir and Incivek in patients who achieve a RVR (89–96%) .
Patients who have cytosine-cytosine (CC) at a specific site within this gene are highly sensitive to interferon [20, 21, 22]. Nearly 80% of these patients achieve RVR, can be treated for a shorter duration with either boceprevir or telaprevir-based triple therapy and enjoy SVR rates that exceed 90%
Perhaps you could tell them you have a blood disorder, that you will be taking some medications for it (or treatments for it), but you do not want to go into detail. Thats not really a lie. The virus is in the blood and, depending on what you treat with, your hemoglobin and your white count will probably drop some (don't know about the new trial drugs, but I think everyone's hemoglobin and white count drop at least some on Incivek and Vic.).
f they get nosey you can tell them you really don't want to talk about it or that it is complicated and you are still learning about it. Those are not lies either. Sometimes it's best to stay as close to the truth as possible without telling them exactly what is going on. It's easier to keep your story straight if it's the truth.
f they get nosey you can tell them you really don't want to talk about it or that it is complicated and you are still learning about it. Those are not lies either. Sometimes it's best to stay as close to the truth as possible without telling them exactly what is going on. It's easier to keep your story straight if it's the truth.
Your in this trial now? How is it going? The nurse did say if I don't respond, they will add interferon, which will add an extra 24 weeks to the treatment. The trial does have a lot of positives. And yes, they will pay me $ to do the trial. But what if down the road they find out these drugs cause later problems. I'm scared to take drugs that aren't approved.
You might suggest your doctor do a little research as experts have said since there were never any head to head studies one cannot comapre the two drugs. As far as the svr rate, well again trials don't seem to agree with him. As you can see svr rates were pretty much the same for both drugs.
Boceprevir-treated patients who achieved undetectable HCV RNA at treatment Week 8 had a high probability of achieving SVR; indeed, these SVR rates were 89% to 91% for nonblack patients and 78% to 82% for black patients.
Telaprevir
The results from ILLUMINATE support the strategy of RGT. Among patients who achieved an eRVR, SVR rates in those treated for a total duration of 24 weeks were comparable to those in patients treated for 48 weeks (92% vs 88%, respectively), meeting criteria for noninferiority. Among those who did not achieve eRVR but continued treatment for 48 weeks, the SVR rate was 64%. The overall population had a 72% SVR rate. These data confirm that shorter therapy for those achieving an eRVR is an adequate course of treatment.
http://www.clinicaloptions.com/Hepatitis/Annual%20Updates/2011%20Annual%20Update/Modules/DAA%20Naive/Pages/Page%206.aspx
Wishing you the best doing treatment
Boceprevir-treated patients who achieved undetectable HCV RNA at treatment Week 8 had a high probability of achieving SVR; indeed, these SVR rates were 89% to 91% for nonblack patients and 78% to 82% for black patients.
Telaprevir
The results from ILLUMINATE support the strategy of RGT. Among patients who achieved an eRVR, SVR rates in those treated for a total duration of 24 weeks were comparable to those in patients treated for 48 weeks (92% vs 88%, respectively), meeting criteria for noninferiority. Among those who did not achieve eRVR but continued treatment for 48 weeks, the SVR rate was 64%. The overall population had a 72% SVR rate. These data confirm that shorter therapy for those achieving an eRVR is an adequate course of treatment.
http://www.clinicaloptions.com/Hepatitis/Annual%20Updates/2011%20Annual%20Update/Modules/DAA%20Naive/Pages/Page%206.aspx
Wishing you the best doing treatment
I work in a small, family owned hair salon. There are 7 hair dressers and the owners (husband and wife). The wife runs the front desk. There is no HR, no paid leave, no sick pay, no fmla. Everyone knows everyones business and its extremely hard to keep anything private. If I tell my boss I have a medical problem, everyone will ask questions. It will be very awkward. I don't work in a typical employment type setting. I need to come up with something to tell them.
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