no question, just sharing

[summer7799]

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!!

[summer7799]

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...

[flcyclist]

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.  

[curiouslady1]

***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.  

[OdinLovesLife]

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.

[sandysf]

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.  

[working dog]

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