What happens if you stop treatment??

[Jenge]

Ok, pardon my rant, but I'm freaking livid at the way I'm being treated by the study people!  I don't  realy want to stop the treatment but I would like to continue it els where. I'm not realy sure what to do. What would happen if I just stop the meds and find a new dr? Im only on week 2.
Thanks, Jen

[JDB1964]

It may not be important to you, but the SOC outside of a study is tens of thousands of dollars.

[FaLaLa137]

I see Dr. Ronald Policastro at Orange Coast Medical Center in Fountain Valley, Orange County, CA.  So far, so good......

[rivll]

Excellent reply Advocate!
Go for it Jenge. :-)

[Advocate1955]

I looked at your profile and I couldn't find a lot of information about your study, etc.  I started to look back through some of your posts to see if I could gather more information before answering.  So, it sounds like you're G3, mild/no liver damage per bx 10 years ago, and in a study being treated with SOC?  If you are only on Interferon and Ribavirin, I believe you can stop treatment, but doing so may impact your ability to start treatment again somewhere else and it may impact your ability to be treated with other types of treatment.  Without knowing specifics, we cannot really advise you on whether or not you are OK to stop treatment.  My suggestion would be to schedule an appointment with your study coordinator and go in prepared with a list of your concerns, discuss your concerns frankly and openly with him/her, and ask if your concerns can be addressed.  If they cannot address your concerns to your satisfaction, then I would suggest asking them if your treatment could be transferred out of the study and into a hepatologist's or a GI's office in the same center so that your care can have continuity in treatment.
Advocate1955

[rivll]

Don't worry about them or your commitment to them-you need to watch out for yourself first-because they don't seem to be listening to you.
It is good for future folks to do the study research, but that doesn't help you now. I agree that you should try to get into see a Hepetologist. This is your body, your Tx and your process and  you need to have the study people behind you.
First, I would try (maybe with a friend acting as advocate) make an appointment and discuss your concerns with them. At the very least try a detailed (non threatening but firm) email. This center works for the Drug company so a cc to them might help if they don't respond.
Next, if you don't get the help you need, try a liver specialist.
Everyone is different, I can only speak to my own inclinations and I know that I wouldn't go through what you are going to be going through w/o a medical provider that I trust.
But, Jen remember not to end up hurting yourself (by ending TX) to avoid a bad situation. Try to get some help. I wish you all the best.

[BoceprevirGal]

So sorry to hear you are having trouble.  If I were you I would wait until you have your 4 week viral load test, and see if your virus has gone undetected. That will tell you alot. If you are undetectable then, you will probably only have to do 24 weeks, and I would stick it out, if I were you.
  Also, not sure what kind of medical insurance you have, but having a biopsy would also help you make your decision.
   I didn't start feeling sick form my Hep C,until I was about 46 yrs old, but sometimes I look back, and wish I had started treatment, before I felt so sick~
   Also, I have noticed my moods changing rapidly, while on tx, so I try not to make any decisions impulsively~

[jules2551]

I think you really need to reconsider about stopping tx and finding a new Dr.  First of all you are in a study and  you made a committment to them.  I am sure there is someone out there who would have gladly taken your spot.  And I doubt you will be able to find a Hepa Dr to take you very quickly or even want to treat you since you dropped out of a trial.  What happens if you don't like the next Dr.  Are you gonna quit tx again?  I think these Drs have so much on their minds about tx they are not concerned about their bedside manner.  Maybe you should just go outside and scream, cry, yell, and scream some more before you throw in the white towel.

Have a great day!
Jules

[Jenge]

I'm in orange county so cal, who can u recommend ? I'm going to so cal liver center now.

[orphanedhawk]

You may not like what I have to say but your letter points out how important it is to do your homework BEFORE beginning any treatment.

However, now you are in the difficult position of having to find the answers while under doing these meds.

When I did tx the first time my GI wanted me to stop tx.
Instead I was able to get in and see a specialist and not drop tx.

I'm not familiar with hepatologists in So. California but we have other members who might be able to recommend someone.

If it were me, I'd try to get to see someone else as soon as possible, while not stopping treatment.

[Jenge]

As far as the study, I don't know the name, it was a pharmacet study against the standard and new pills. I got the the standard. I'm tye 3, I dont think I have liver damage but they didn't do the biopsy even though I asked for it. My enzymes were normal. And they went off a biop I had 10 years ago.  I rearranged my sched. To make my app and when I get there they tell me I have to come back another day bc they didn't have my kit. I come back and they say I'm not on the sched.

[his3707]

It depends on a lot.  can you give us some more info.  what study are you in.  what is bothering you about the way you are being treated what genotype. liver condition. anyother info ?  You dont have to like your docs and they dont have to like you.  I had a problem with the way I was treated but I approached them with my concerns and they treated me better after that.  There is only so much they can do anyway.  Even though its is great if you get cured personally, their interest is more about the drugs than you personally.