doctor said I have to wait

[brianmo]

I posted yesterday but it seems to be on a Social Community website instead of here so if I am repeating myself for some of you, I am sorry.

I saw my Doctor yesterday, in Seattle, 3 hour trip, had to spend the night before to make the appointment and she said I, 1a, stage 2, will not be getting set up for tx until she txs all the sicker people first,When I saw her last year for starting tx she suggested I wait until Spring 2011, which is now, and she was pretty sure a new tx would be available. So, I waited, got my life in order, ran a few marathons, now she telling me this!!! She also ran the gene test ILB28 and said if that comes back in my favor then SOC would be the plan unless I am willing to wait. If one more person says lets wait and see I am going to vomit. I had no idea 10 years ago when I got dx that those words would come back to haunt me. !st dx the doc said Lets Wait and See...each doc has said it since. What are we waiting for? Now she says if I dont do this new tx that will be available this month I can wait for the next one coming down the pipe!!! She must think I am getting younger, not older...   On my morning run today I decided to start making calls for another doctor at a clinic that is not so busy, (she is very involved with studies) Or, I can
recycle some of the ones I have already seen and fired!!! LOL....    

[Trish77]

"She also said she found out recently that for those who tx with the new drug, they will have a resistance to any tx after that if they don''t clear. How this is known I will never know but that is her rational."

This is not at all true.  Different drugs have different resistance profiles.  She sounds like a doctor who tells you what she wants you to believe to manipulate you to do things the way she wants them to be done.  I'd get a different doctor also.

Any of these doctors you've cycled through given you a biopsy or it's just been putting you on hold?  If you haven't had a biopsy, I'd stick with one of the doctors you like the most long enough to get a genotype if you don't have one and a biopsy and then make some decisions based on your genotype and how much liver damage you actually have and start stepping forward.  Many are taking the approach of starting treatment with SOC and if it shows early signs of success then continue and if not, and liver damage is low enough to allow a bit of waiting time, then wait for better drugs.  However Boceprevir/Victrelis is about to be released into marked and Telaprevir is about to be approved and released into market as well, so your wait for something better if SOC doesn't go well will not be too long.  Time to get your show on the road.  Good luck.

Trish

[Diamando6]

I would go for SOC, as nygirl said, and if test shows, that you are CC or even CT, then you might have good results. It is never too late to repeat therapy with a new one. Besides,your liver is not in such bad condition, as many of us here unfortunatelly are. Dont panic, if you are patient enough, then you might also wait for your round of new medications. Anyway, I would go with SOC, specially, that is your first treatment at all.
Good luck, and wish you the wright choice!

[copyman]

Since most people on this and other forums are up to date on tx we basically just need a doctor to write the scrip. Once educated about HCV we treat ourselves :)
Best of luck

[brianmo]

Thanks, and thanks to all. I am going to recycle a doctor I had before, I will call and get in to see him in two weeks, after my ILB28 test comes back. Along with all the other blood work the clinic did. To bad, I liked her and felt she had good information. This other doctor is ok, just felt he was not on top of the game.

Diane, I have been following your post and hope you are feeling better. I was to start last year the same time as you.  Keep letting us know how you are doing and I think you are right, people need to know how it is AFTER tx also. I think after people tx they fall off this website and try to get there lives back together which is also a good thing. Yes, I have been feeling fine, energy is good.

copyman, you are right, getting to the point where I walk into a clinic and say I am ready to tx, today!  is huge. It has taken me a long time to get here. I need to keep going forward.

[Diane12855]

BTW.... heck, there is always going to be a new drug being developed that you can wait for until they find something that kills the virus in a month. I think your doctor is just using that for an excuse because she has been swamped with new tx patients since the new drugs are out. Find a new one!!!!!!!!!!!

[Diane12855]

Hey Stranger!!

I think you are right. You need to find a new doctor. Yes, you are only stage 2, but you are also over 50, and all stats show that after 50 things go down the tubes faster than before. How Frustrating!!!!!!!!!!!!

I know you are already taking great care of yourself, so there is nothing else you can do personally. Is your energy level still like it was last year, or are you finding yourself having to push harder than before? That was my warning sigh that things weren't getting any better before I did tx. BTW, I'm 2 months post and still UND

Hang in there and find another doc,
Diane

[copyman]

find a new doctor. if someone is ready to treat then they have a right to treat. Half the battle is getting ready mentally and wanting to treat. They might not be in the right state when the doctor is ready.
Find a doc that will treat you now and in 6 months be done with it!
best of luck

[James10500]

your doc is incompetent there is no rationing of Victrelis, good move on getting a new one.  It's not like they have to do anything once your on meds.  You go to the lab once a month and they look at the report.  I have not seen my doc since October, there really is nothing they can do for you.  You get the meds, you take the meds, they either work or they don't.

[brianmo]

Yes, I did remind her and I let her know how angry I was at her. She said she was not aware of the gene test at that time, (why did she not call me and let me know?) and, she feels that there is a better drug right behind this one which is good news for all. She also said she found out recently that for those who tx with the new drug, they will have a resistance to any tx after that if they don''t clear. How this is known I will never know but that is her rational. That is why she is suggesting I wait.

[Susan_1a_CC]

Well, perhaps the good news is that your doc thinks you are healthy enough to wait and perhaps the bad news is that your doc isn't out for your best interests...

Seriously, did you remind her that she had said she would tx you this spring?  If you don't have an excellent communication line with her then do look for someone new.  Good luck.

[nygirl7]

Well you have to make sure you have a knowlegable doctor and someone involved in studies seems to be. I know you want to treat but it does appear that they are going to get the latter staged people on the new meds first. That kind of makes sense to me if there is only so much to go around and someone is stage 4 versus stage 2 it's probably what I would do too.

I know you dont want to hear that but believe me........there really is no urgent rush you do have time and if you are CC on the OLB then you can do SOC and probably have awesome results (with less sides) so that might just be worth it.

Just try and see it all from a big picture you are healthy and monitoring your disease and that is what you should be doing, honestly. Unless you find another doc that can get you boce or tela I would not rush....you might never even develop past where you are right now.

Sorry I know it's hard to wait but that is a big part of hepc......rushing to wait, we are always waiting on something.