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1722607 tn?1335747858

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!!
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Avatar universal
Why is it a hard choice?

I don't mean to be rude asking that. You are obviously really struggling with this decision. I just wonder why you are not not accepting your doctor's advice on this.
Helpful - 0
1722607 tn?1335747858
Well, the main concern about the trial is the schedule. I would have to go in every day for the first 14 days straight. And then once a week after that. It's an hours drive each way. I would have to tell my work something, so I could come in late. I don't know what to tell them. I can't tell them the truth :\
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1722607 tn?1335747858
Well, the main concern about the trial is the schedule. I would have to go in every day for the first 14 days straight. And then once a week after that. It's an hours drive each way. I would have to tell my work something, so I could come in late. I don't know what to tell them. I can't tell them the truth :\
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163305 tn?1333668571
Personally I think you're lucky. Go with the orals! That's what I would do.

Good luck,
OH
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163305 tn?1333668571
Have you looked at the pages here with people's side effects on triple therapy?
Do you really think work won't notice you losing your hair, acting emotional, getting rashes, running to the toilet, should I go on?

I'm sure there's something you can tell them.
Maybe we can brainstorm on this.
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Avatar universal
Can't you just tell them you have a serious condition that needs treatment, it's a personal thing and you are not comfortable talking about details with anyone just yet....then never tell them what it is, ha...
Helpful - 0
1722607 tn?1335747858
Well the one plus is that they said I can come in early in the morning, as early as 7am. The nurse said I could come in at 7 and she will draw my blood and give me the pills and it would take about a half hour. The first day I have to go for 13 hours. And day 7 is a 8 hour day. So I might be able to pull it off to be at work by 9. I need to tell my boss something in case something goes wrong. I just need to get thru those 14 days!
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Avatar universal
The lady I know from the other forum who did the same trial that I am on (and I think you are contemplating) took a two week vacation.  She drove three hours to get to her site in another state and stayed there for the two weeks.  You may want to ask if there is a participation stipend so that you could afford something like this.  It was her personal "break".  After that, many of the sites are very accommodating.  Mine was.  They can have you come in very, very early, as long as there is a nurse to draw your blood.  

You only need to be concerned about taking your meds with breakfast at a particular time everyday and go to the appts and get your blood drawn when you are supposed to.  It is nobody's business why you want a two week break.  You can tell them it is "family business" (which it is).  I translate that as a nice way of saying "don't ask me anymore questions".  If they do, you could always say "I'd rather not say".   Even if you don't want to take the two weeks as vacation, you could swing it by asking to come in early for the blood draw on those days when it is only an hour.  

Is this particular job the only one around?  My hairdresser has changed jobs several times and now is in business for herself.  We have followed her around and now I drive an hour to see her because she is that good.  
OH has a point.  You may very well have to take time off anyway.  If you take the triple, it could come over you without any predicting it.  Wouldn't it be better to have a carefully planned two weeks than something random.

As a former manager I would have to say that I was always very frustrated when someone would get sick on and off and always unpredictable.  I certainly wouldn't be bothered by someone taking off in a planned fashion because then I could plan how to fill behind them.  

I wonder if there is something else that makes you hesitate?  The drugs perhaps?
Helpful - 0
Avatar universal
How many people work for your company?  More than 50?  Is there an HR department?  Do you have a disability policy?

The all oral trial sound like it may be easier on your body, long term health, and your job even though it is 14 days in a row and once a week post.  If at all possible, I would be going that route.

If fmla applies, maybe you don't need to advertise.
Helpful - 0
Avatar universal
If you are on the same trial as me, and you fail, you do get rescued with ifn and riba (I haven't heard of anyone failing so far, just sayin).  You can also quit and do the triple if you want.  But you can't just quit the triple and get into a BMS/PSI study very easily.  If you don't like the triple you may have to wait quite a while for another chance with another drug combo.  
Helpful - 0
1722607 tn?1335747858
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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Avatar universal
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

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1722607 tn?1335747858
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.
Helpful - 0
1815939 tn?1377991799
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.
Helpful - 0
Avatar universal
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%
Helpful - 0
163305 tn?1333668571
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.
Helpful - 0
190885 tn?1333025891
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
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Avatar universal
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.  
Helpful - 0
Avatar universal
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.
Helpful - 0
Avatar universal
***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.  
Helpful - 0
1669790 tn?1333662595
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.  
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1722607 tn?1335747858
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...
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Avatar universal
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.
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Avatar universal
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.
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