Saw Doctor today. No to tx, right now.

[brianmo]

Here we go again. I have been dancing with 9 different Doctors in 10 years. Today, after a wait period of a year, she tells me that she needs to tx the ones with Stage 4 and 3 before me. Stage 2. 1A. This could take 6 months to a year. I was ready to start yesterday. She had blood drawn for Gene Test ILB28, if it proves in my favor than she suggested I do SOC. Well, I saw her a year ago to do SOC and she said to wait for new drug in spring of 2011. So, I waited, got my life organized and now I am back to one year of tx instead of 6 months!!! I sat and cried. I am about to give up on tx. She also said if i tx with the new drugs being released in the next month and they don't work I won't be a candidate for any future treatment with other drugs.  When I suggested I find a doctor who possibly did not have as many patients as she (she works the Liver Clinic in Seattle where they do lots of studies) she said that ALL doctors will be treating the sicker ones first. Anyway, I am so emotionally tired. It was a 3 hour trip to get home which gave me time to mellow out. Any suggestions?  How reliable is the ILB28?

[GoofyDad]

It seems to me the relevant question is: With a favorable  ILB28 - how much advantage is gailned with the new drugs in that setting? If the margin is slim enough a case can be made to not trade potential use future antivirals against a relatively small advantage now.

[brianmo]

thanks, I am still trying to calm down after being home since last night. It is my understanding that the Clinic can only follow so many people doing tx. That part I understand, what I don't get is I have been waiting, due to doctor suggestion a year ago and now she wants me to wait another 6 months to a year. After my morning run today I came to the decision to start looking for, or recycle, another doctor who will tx me now.

Good luck with your visit in Dallas. Don't settle for anything less....I also want this out of the way before getting older just makes sense that to do it earlier is better than later.

[frijole]

I think you have been had.  Sounds like you are getting a canned speech by an overworked hepatologist.  So what if they are treating a lot of patients.  Although you have been to 9 doctors, perhaps you need a tenth or you need to tell them it is your decision to treat now.  Just because you have the favorable genetic makeup does not mean you need only to do SOC.  You could possibly do less time if you were to clear by 8 weeks with Boceprevir.

The Liver Institute in Dallas sent me an "invitation to a consult" in June.  I consulted there after my relapse and the doctor I saw there has moved to another hospital. So they must be going through all their files to make sure they are contacting everyone.   If I make the 6 hour drive or the hour plane flight and they treat me like you, I will be extremely mad.  In fact, I think a preliminary phone call is in order. I am a 1 - 1/12 and would like to get this out of the way before I get any older.

frijole

[FlGuy]

I expect that we will hear more frequently about lining up for treatment as the new meds become more mainstream.  And, it's not all that unreasonable I guess.

But the logic about SOC before DAA's escapes me.  I'd expect that as people flow through the pipeline that concept will be abandoned unless it's the way that insurance companies will mandate....

Although the new meds have been thoroughly tested I don't think that establishing a longer track history in real life use would necessarily be a bad thing for those on the sidelines who find themselves in a position like yours.