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94007 tn?1224762736

Questions for Doc for My Friend that is a non responder

Hi All,
Those of you that know me know I'm not treating yet (1a with 0 and 0-1) and son is starting treatment in September - he is much further along and hopefully as he is young, will respond. I have gotten so informed from this site and shared a lot of info with a friend who recently started treatment.  I was appalled at the lack of info he had from his doc so we compiled a list of questions that he took with him, and most of those questions came from here.  He just called me and said they were taking him off treatment - at 12 week mark his V/L was 700,000
He says it started at 125 million(is that possible?). Could he be a slow responder or is his V/L load too high.  Now he is very depressed and thinks he is going to die. I offered to go with to his doc appt next week - what questions should be asked? And what can I tell him now about options? I see one of the best hep docs in the country who is heading up research and clinical trials in Boston - my friend sees a Boston doc as well - should I urge him to switch? I guess I should at least meet his doc before I try and give my opinion?  Advice???
18 Responses
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94007 tn?1224762736
Yes Bill, 54 was a great year.  I think I gave my friend too much info and he didnt call me back, I have to remember that just because I want to be informed it doesnt mean everyone else does. I sense that he stopped TX already and maybe didnt want to tell me? Because the doctor told him to and he, like most folks, just does whatever the doc says. I will report back in about this after I go to the appt with him next week. Thx for all the GREAT feed back - I've got my list :-)
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Avatar universal
You're seeing arguably one of the top five hepatologists in the country. You couldn't do you friend more of a favor then by trotting him over there if he and your doctor is willing.

How much liver damage does your friend have? To me, that's one important factor for the risk/reward, treat or no-treat equation. If he has little or no liver damage, then treating longer (and maybe harder) to give him still what amount to marginal odds, has to be weighed against the risks of the treatment drugs themselves. On the other hand, if his liver damage is significant, you then have a different risk/reward equation.

Hope this finds you and your son well.

-- Jim
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Avatar universal
yeah he did get his 2-log drop -- moved the decimal too many places, cuteus.  If his start was 125,000,000, a 2-log dorp is 1,250,000 and he did make that

Dancegirl, seems like your friend should switch doctors.  Do you have any idea what his liver is like?
Helpful - 0
94007 tn?1224762736
He is a stage 3 grade 3-4
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Avatar universal
I feel a little frightened that if the doc doesn't see a 2 log drop that they will discontinue treatment, as I stated before I want to beat this, if I would be willing to continue trying to fight, I wouldn't want to be taken off the meds. I start tx Friday, I go to the Dr. tomorrow feeling alittle anxious right now. Can really keep my mind off of this.
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Avatar universal
It is such a head trip! Worry is worthless!Try to remember that. All it does is cause stress so it is counterproductive. I am a major worry wort but I am learning how destructive it is to have those thoughts ruling my existence. I catch myself doing it and replace those thoughts with "power messages" instead. It really does help.
Worry: "OMG Im gonna die!" replaced with: " Im gonna kill this demon!" or whatever you dream up but it does work. You can "worry yourself sick" and right now worry is an enemy. Stay positive. You are far more powerful than you realize.Do not let negative thought rule the nest. Kick it out!
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Avatar universal
I'd ask him about upping doses and extending treatment. I'd discuss rescue meds ( like procrit) and see if he is willing to use them. Doctors are all over the map on treatment protocols, some are hard nosed and stuck in their thinking, some are open to individualizing treatment to meet the patients needs. You might want to print out some studies that back up upping doses and extending treatment times. Hopefully some here who have those studies handy will share inks with you. I am the worst at keeping those things straight and available, I can't find a file for the life of me when I need it. I blame brain fog but I should blame "scatterbrain syndrome" cause I was like that before tx!
To me the most important thing is a doctor who is WILLING to work with the patient to acheive the goal of SVR. The treatment has shown in studies to have a positive effect on liver histology so that is a plus too.
I relapsed and I started retreating right away, many don't. They take a break from the meds and then restart at a future date.
I am just a glutton for punishment I guess. ;)
My thinking was I wanted to hit the virus again fast before it had a chance to replicate into large numbers again. In two weeks off meds it was at 9,000VL. I restarted meds at higher doses of both drugs and was UND by week 4.

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Avatar universal
Thanks for the positive input, I usually can keep the good thought but today, its almost like I'm having to remind myself to breathe....if you know what I mean, I want to cry, and yell all at the same time.
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87972 tn?1322661239
54 was a fine year, huh? As Revenire___ pointed out, at stage 3-4 he needs to complete his course of treatment for possible improvement in hepatic histology.

This is important for all of us to remember-- HCV treatment has two endpoints; it
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94007 tn?1224762736
Weight 175 Peg was .05 (does that make sense to you - I'm clueless) and dont know riba but he took 6 pills a day
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Avatar universal
Just noticed your friend is a stage 3. My advice still holds, but if your friend decides to consult with your doctor, bring the original biopsy slides with you -- better yet send them in advance -- so your doctor's pathologist can take a look. There are stage 3's and there are stage 3's, as explained to me by a very kind pathologist who took the time to sit down with me. In my case, my original biopsy report said stage 3 out of 4. Her reading was stage 2.5 because the bridging wasn't fully formed. When I asked her what stage she would give me if she had to pick a whole number which is the usual convention, she said stage 2. Biopsy results can vary up to 2 stages due to absolute sample size, relative sample size and pathologist bias. Can't hurt to have the slides read again. The other point I forgot to mention is the depression. "Depression" is an all-encompassing word. Depending on how severe, that should be checked out by a professional.

-- Jim
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Avatar universal
Oh btw I'm not telling her to dump her doctor, so please easy on the keyboard :) But I do think Dance's doctor is that good that I'd recommend him as a consult to anyone treating, regardless of their doctor's credentials. Hope this finds you well.

-- Jim
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Avatar universal
I dropped the two zeroes and then the commas, must have lost a zero in the process, but with all these brains that still work here, someone is bound to come up with the correct answer, and our first winner is FRIJOLE!

dance, he has a good shot at svr with the right team of drs, get him a second opinion asap. He would need longer tx if he wants to get a better shot at SVR.

sorry for my rusty math!
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Avatar universal
My two cents would be for you to go with him with your questions in hand and see if he can get his present doc to work with him to continue and possibly adjust his dosages up. If the doc is not willing to think outside the box then find one who will. He can probably get a referral from his present doc to a Heptologist and I would do that either way just for the consult/opinion if nothing else. If this doc is willing to individualize his treatment he can avoid the long wait that is sometimes in order to see a new doc and continue his treatment in the meantime. He is a responder and made his 2 log drop! If he was my friend I'd advise him to keep fighting. His adversary is showing itself to be a worthy opponent so he needs his fighting stance, the gloves are off. Depression can be dealt with with drugs, maybe he needs some. He needs to not feel defeated and actively fighting this will help. The fat lady isn't singing yet.
He must STAY POSITIVE.
What a sweet friend you are, he is lucky to have you in his corner.
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94007 tn?1224762736
Thanks Kalio, what a nice thing to say.
He did have to take Procrit, would that maybe affect doc's decision? I told him many on this site have treated twice, How long did you wait those of you that have that experience?
I think I will definitely go with him next Wednesday.
So what questions should I ask doc?

On an up note, my son has tolerated the transition to better(for liver) seizure meds so hopefully we will stop any further damage on that end, he is drinking water - with add-ins - which is huge - this is a kid that just does not drink water!And his summer job(camp) knows about his HCV status and did not freak out!!!
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Avatar universal
I am actually hoping that my twelve week is detectable, then I am officially a nonresponder and can be a part of the vertex trials scheduled for late 06 or early 07.  I agree that he may want a second opinion........... and have someone go to the Dr. with him... people often get so stressed, they don't ask the right questions, they don't remember all the details...
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Avatar universal
correct he had a 2.2 log drop, not great but good. why does he think he shoud stop? maybe extra time on tx will do it or as said it may bing down the stage. i am stage 3.3 and was told it could be 10 to 12 years before cirrosis and then it might be the "good kind" of cirrosis. even then he said a transplant was not demanded.
he has a long time before he has to get depressed.
bobby
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Avatar universal
hi dancegirl! good to see you here more often.

your friend did not achieve a 2 log drop which would have been 125,000 if my math is correct. for that reason, many drs terminate tx early. He did not even come close to the needed drop and his chance at SVR is lowered significantly. THe good thing is HE IS A RESPONDER. his virus was knocked down considerably. can you tell us what his meds are and doses? How much does he wt?
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