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Dr Visit unexpected results
I finally, after 3 months of waiting, got into the Liver Clinic to see the Specialist. I have been anticipating starting tx so I got all my ducks in a row, visit across country to see mom, people lined up at work to take my load, etc. After she looked over all my reports and lab work and 2 bx's, she suggested that I wait until the new drugs come out within the next year. The study is being done at the Clinic I was at in Seattle and she is right there with it. Two things, it will be a shorter treatment time, 24 vs 48 weeks and 80% instead of 50%. I walked out of there like a mummy who was sideswiped. My head was spinning. She wants me to think about it for a few weeks. In nine years I have had no change in bx, minimal fibrosis, gt 1a. Huh. The drug is Telaprevir and the side effects, the worse so far, is intense itching. Some people had been pulled from study because of it but she said it is very promising. Now, I know over the past 9 years since I have been dx there has been a promise of a different tx (this one is not different just adding another drug to the mix) so I am afraid if I wait what if the FDA changes there mind or they prolong the drug for another year etc..I would imagine, with the amount of people waiting for treatment, they would love to get it on the market ASAP.
I need to get my mind calm. I can not stop thinking and my friends are tired of hearing about it. I wish I could shut my brain off for a day or two. I came home last night and got on this sight and see that the news is out there, lots of post pertaining to the new drug. So there you have it, according to her its right around the corner. I am excited for the new folks who are recently dx and can wait a year.
Mo
I need to get my mind calm. I can not stop thinking and my friends are tired of hearing about it. I wish I could shut my brain off for a day or two. I came home last night and got on this sight and see that the news is out there, lots of post pertaining to the new drug. So there you have it, according to her its right around the corner. I am excited for the new folks who are recently dx and can wait a year.
Mo
Best Answer
i agree with your doctor. I can tell you personally that Telaprevir worked for me. I can't tell you it was easy and yes the itching was bad but I got through it. The itching really dont start until around 6 or 7 weeks and you only take Telaprevir for the first12 weeks. I will take itching for a month or so to be cured. I think it is a small price to pay.
Took my second shot this past weekend. So far, so good. A couple of lazy days, and then back to normal life... with the constant fatigue. It's not much worse than before tx though, so I think I'm lucky so far. Hardest part is remembering to drink LOTS of water. Nygirl ordered me to do that, and I'm good at following orders...... she is right about it helping the sx not be so bad, I think.
Thanks all for your comments, I am feeling better about all this. Diane, how are you?? I know you recently started tx, I thought we would be doing it at the same time!! Let me know how your feeling and I hope its all going OK for you. I think about you.
It's really whatever works for you. If you wait, I'd look at it as potentially a few years til all the wrinkles get worked out. If sooner, then great big bonus. And if you really can't wait and you're aware that it means 48 weeks ... perhaps if you get RVR at 4 weeks, your chances of success go up exponentially and you can continue. You would have to decide when you call it the first time around and wait for the telaprevir, IF you decide to treat now. It's all about what kind of waiting time you're willing and able to put in.
You haven't said what genotype you are. I am assuming it is one because you talked about 48 weeks of treatment. With minimal fibrosis, if it were me, I'd definitely wait for the telaprevir. It will really improve you chances significantly for a sustained response.
Good luck with whatever you decide.
Good luck with whatever you decide.
I'm tending to agree with Trish. I know how you feel about the waiting... it is really hard. FDA approval hasn't been something that was guaranteed, as well as how long it will take insurance companies to get on board. I'm glad that your bx results haven't gotten worse, but I have read that after 50, things start to go downhill faster.
This is a tough one... the pros and cons are about even in my eyes. I just know that getting started with treatment meant starting down the road to recovery, and waiting meant limbo for me.
:o)
This is a tough one... the pros and cons are about even in my eyes. I just know that getting started with treatment meant starting down the road to recovery, and waiting meant limbo for me.
:o)
I would definitely wait for the new drugs. With minimal liver damage and the choice of doing 24 weeks vs 48 weeks, I personally find it a no brainer. Why would anyone, who actually has the possibility not to, want to expose themselves to these drugs for twice as long.
I only treated for 32 weeks, but any week less would have been welcome! And I'm sure that anyone who has treated would have welcomed having to treat for a shorter time with a hand kiss.
I only treated for 32 weeks, but any week less would have been welcome! And I'm sure that anyone who has treated would have welcomed having to treat for a shorter time with a hand kiss.
Thanks for the clarification, seems everybody ELSE understood that. :) As long as you realize it could be more than a one year wait and as long as you're prepared to wait as long as it takes to be available. There's no way anyone would be able to give you a start date right now. You just seem raring to go and I recognize that feeling. Good luck with this.
Sorry, I guess I was not clear, I am not in a trial now or will I be, she (Doctor) was suggesting I wait until Telaprevir is cleared by FDA, which she says is early next year and do tx then. I have not tx yet. But you are right, when your ready your ready. With my situation I can keep things the same, work, life style, for another year. I will just be VERY ready... but I want a start date!!
i have to go with copy man on this. I too was on telaprevir and the itching did not get to me until week 10 and then at week 12 it was over. I was in the last trial that just ended and they have become more aware of the rash and how to treat. if you can wait, wait. After two failed attempts, this last one with the telaprevir has held and at 14 weeks post treatment am still UND.
Sigh...I meant...pretty sure you've got a Phase III trial as in Phase THREE. Missed a "I".
Well...the thing is, when you're ready, you're ready.
If what you're getting on this trial is similar to what you'd be getting if you waited and it seems like it is, then perhaps in YOUR case, there's reason to proceed now. There are still a number of things to be worked out for the FDA approval and here you have access to Telaprevir now. I would imagine this is a Phase III trial? The other thing is that in a trial, the drugs would be free to you. While yes, the new drugs are coming, nobody knows what the fees will be and how quickly the insurance companies will adopt the new drugs.
The other thing is ... youv'e GOT all your ducks in a row NOW. And that was one of the considerations for me also to go through with the clinical trial and/or treatment at THAT time, even though my stats on paper said I could wait. It was the perfect time in my life to proceed. I was in a contract job that I was okay with losing if things went bad. I was single and no relationship to impact. My kids were reasonably independent of me and I wasn't impacting anything significant by proceeding. In your case, you've got work issues covered NOW. Will you have that in a couple of years or whenever FDA approval and everything else it takes makes Telaprevir available? Seems like you've got everything ordered for NOW. The availability of the drugs is not the ONLY consideration when doing treatment. Your own mental readiness and situational readiness are also important so that you're in good shape to complete the treatment with all it's ups and downs once you start.
So .. basically...when I read your information, I read .. you've got all your affairs ordered very well NOW. And that is as important as the drugs being on the market. You don't know what your life will be like in a few years. So...I'd say if all systems point to "Go" now .. and the treatment drugs are adequate....full steam ahead.
Without knowing the details of your trial but pretty sure you've got a Phase II trial, if there is little difference between treatment now on the trial with Telaprevir and treatment later with Telaprevir, I'd say a bird in the hand is worth two in the bush, particularly with all the ducks in a row added to that bird in the hand.
Just another point of view to consider.
Good luck with your decision.
Trish
If what you're getting on this trial is similar to what you'd be getting if you waited and it seems like it is, then perhaps in YOUR case, there's reason to proceed now. There are still a number of things to be worked out for the FDA approval and here you have access to Telaprevir now. I would imagine this is a Phase III trial? The other thing is that in a trial, the drugs would be free to you. While yes, the new drugs are coming, nobody knows what the fees will be and how quickly the insurance companies will adopt the new drugs.
The other thing is ... youv'e GOT all your ducks in a row NOW. And that was one of the considerations for me also to go through with the clinical trial and/or treatment at THAT time, even though my stats on paper said I could wait. It was the perfect time in my life to proceed. I was in a contract job that I was okay with losing if things went bad. I was single and no relationship to impact. My kids were reasonably independent of me and I wasn't impacting anything significant by proceeding. In your case, you've got work issues covered NOW. Will you have that in a couple of years or whenever FDA approval and everything else it takes makes Telaprevir available? Seems like you've got everything ordered for NOW. The availability of the drugs is not the ONLY consideration when doing treatment. Your own mental readiness and situational readiness are also important so that you're in good shape to complete the treatment with all it's ups and downs once you start.
So .. basically...when I read your information, I read .. you've got all your affairs ordered very well NOW. And that is as important as the drugs being on the market. You don't know what your life will be like in a few years. So...I'd say if all systems point to "Go" now .. and the treatment drugs are adequate....full steam ahead.
Without knowing the details of your trial but pretty sure you've got a Phase II trial, if there is little difference between treatment now on the trial with Telaprevir and treatment later with Telaprevir, I'd say a bird in the hand is worth two in the bush, particularly with all the ducks in a row added to that bird in the hand.
Just another point of view to consider.
Good luck with your decision.
Trish
My doctor said the same thing. My daughter is wanting to jump into tx and get it over with, but our hepa basically told her that by the time she finishes the 48 weeks, Telaprevir will be on the market and she will be able to go just 24 weeks. So, we wait...but not patiently.
Good luck to you,
Isobella
Good luck to you,
Isobella
It sounds like the right plan. Understand that you'll still be getting the riba and interferon for 24 weeks, in addition to 12 weeks of the new drug.
I agree....wait one or two more years. 24 weeks is half of 48 weeks with much better odds.
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