1 more from slarso

[slarso]

Hey guys, I didn't want to waste a post but this is important. I want to thank you all for the comments about my neg EVR. This place has been my home for a year. I honestly feel like family with all of you. I get more comfort and more help from this site than other place, including doctors, friends and even my wonderful wife. I was in such a funk the other day after the news, All your comments ment so much to me. They helped me through a very difficult day. I don't know what the future holds, I am confident I will slay this dragon some how. I can handle the sides, and with your folks help I have the support. Maybe I will join a trial or the such. I will see my doc on friday and plot a course.

In closing want to say I feel like I know you through this board. And in spite of our some times amusing screen names I have mental pictures of all of you. Slarso is Steve Larson. I live in Dana Point, CA, just a between LA and San Diego. I am in the phone book. If youu are ever in the area, give me a call. I'll supply a honest hug and a big glass of my new favorite beverage...WATER

Thanks to all!
Steve

[MajNeni]

Dear Lori,
That drop in ALT must reflect a huge difference in how he feels!  It also reflects that the inflammation in his liver is way down.  In fact, that ALT is now in the normal range.
Starting at 16,000,000 (IU or copies/mL?) you are looking to be below 160,000 on the 12-week PCR; that would be the "2-log drop", where the guidelines say you go forward with tx.  So one of the less sensitive tests (lower limit 100 or 50) would easily tell you if he's beating that, and I'd be very surprised if he weren't WAY below that.  
Optimally, he'd be undetectable; that's Early Viral Responder (EVR).  Some clear in a couple of weeks!  Some folks clear at week 16 or 18, and they're called Slow Viral Responders; they are the candidates these days for longer tx.
Knowing when he becomes undetectable can help decide if 48 weeks is enough.  Many docs treat 36 or 48 weeks beyond undetectable, especially for 1's.  
Personally, as a 1b, I found a lot more reassurance in being "undetectable by Heptimax" at 24 weeks than I had in the <50 IU/mL PCR at 12 weeks; but each one increased my cautious optimism, courage and willpower to go forward through tx.
Maj Neni

[OkieJim]

So happy to hear from you. I've been praying so much lately for us all. It's getting better I'm starting to get some color again. I pray you keep making it through TX. I'll be here for awhile. So many newbees looking for us lately.

Love Peace and Happiness to you.

[lollymart]

Thanks for the info, I will be going with my husband to his next doctor visit and bring up all these points.  The one good/bad thing is that my husband's viral load is 16 million.  I think any significant drop will HAVE to be looked at and considered.  Already his ALT level dropped from 1100 to 35.

Thanks again,
Lori

[LvdByGod]

PEACE TO YOU TOO BROTHER!!! have you seen "Christ's Passion" movie yet? i will have to go soon. heard it was really good!

[OkieJim]

The family is going this weekend. Can't wait. It's very hard to take. I understand when you are a believer it really hurts the heart to watch.

[LvdByGod]

OKIE? SMOKIE? NOOOOOOOOOOOOOOOOOOOOOOOOOKIE!!!!!

[Lyric]

I know it is tough!!  I am in Los Angeles and my Doc at UCLA says there are many new meds on the way with less SX.  I heard Europe is already using a Riba with much less SX than we have here.  
Everyone in So Cal should all get together.  It would be great to meet everyone.  I am starting with shot 1/48 on Sunday.  Good luck with your Doctor :)

[berlynn]

I am sorry to hear your news...did not see the first post cause I haven't been checking in much lately.....to tired lately...just married my daughter....her apartment flooded and she had to move the day after wedding.....then had family come into town...and more comming next week....my life has been WAY toooo busy(crazy) lately...so I have been sleeping every chance I could find.
Any way...a good friend of mine was just DX a while ago (2a) and will be starting TX soon. We both need to get away... and rest. So we decided to Leave AZ in a couple of weeks and come to CA for a few days. I will try to give you a call. Take care, berlynn

[lollymart]

do you know how much the PCR is?  

Thanks for the info.  He has another month to go before the BIG test, but we'd like to know all our options early.

Lori

[MajNeni]

Consider paying for a 12-week PCR, and not involving the insurance folks...

[Revenire]

The medications are expensive; something like 25k-40k per year if we have to pay out of pocket. There are ways around that though: cheaper ribavarin, samples from the doctor, help from the drug companies themselves.

Fight your insurance company.

Go to <a href="http://www.patientsarepowerful.org/index.cfm">Patients Are Powerful</a> for a start on how to do that.

Don't let the bastards cut your husband off just because he didn't get the drug company's "magic" number. The 2 log drop is one indicator, but as so many here can attest to, it isn't the ONLY indicator or even the ONLY reason to continue or stop treatment.

Your doctor can help you fight the Nazis at the HMO.

[MajNeni]

I don't know the price, but your hospital lab or a private lab could tell you on the phone.  I'd think they're between $250 and $450.  Look up the tests under
www.questdiagnostics.com
You can read about all their tests for HCV RNA.  I had to present that info to my doc, because I was the first to ask for the Heptimax, and they needed to know how to send the blood to the lab.
Any PCR test that has a "lower limit of detection" of 50 (range of detection from 50 IU/mL to some big number) is pretty good at 12 weeks; the more expensive quant "Heptimax" test detects down to 5 IU/mL.  Since we start with viral loads in the hundreds of thousands or in the millions, any QUANTitative or QUALitative test with a lower limit of 50 IU/mL is fine at this point for UNDETECTABLE or not; but only the QUANTS will give you a VL number if the virus is still detectable within the range limit of the test.  
If the result is good, as it usually is, you can still submit the charges to the insurance.
Good luck!
Maj Neni

[cindee]

I know you will fight this dragon to the end. Your attitude is GREAT!!!! Let us know how it goes at the doctor visit. You are one special dude, and we all will be praying for you. I finshed 48 3 months ago, and I have some things that have come back. So I know how you feel. I'm going to make an appointment with my liver doctor and demand some more blood test. He wants to wait till 6 months to re-test my blood. I want it done now as my cobra insurance runs out in Oct., but I can go on my husband's insurance I hope, incase I have to re-treat that damn dragon, God forbid! Let us know...we all will be waiting for your post. Much love @ many prayers, Cindee

[slarso]

they are all me, try  496 6847

steve

[lollymart]

I'm just curious, but my husband's doc told him that if he did not acquire the 2 log drop that our insurance will probably not pay for any more meds.  He also said that most people would not go on themselves since they could not afford the meds on their own. Unfortunately we would run in this category.  Is this a good assessment?

Thanks,
Lori

[Daria2]

Steve, There are 3 of you in Dana Point! Can you give me a clue, lake the last 2 digits of your ph.#? Daria2

[Daria2]

Steve, hang in there, don't give up. I'll look you up in the phone book ang give you a call. I live in Aliso Viejo. Daria2

[scruffy]

Good luck and stay strong Steve.

[OkieJim]

Good luck to you my friend. I know you have the ammo you need to meet with your Dr.  Keep your attitude. We are here for you. I'm still recovering from TX 1 week post. My right side has some pain but I think it's because stupid me re-started smoking during TX. Now I have to try to stop again. Again keep fighting you will win.

[DownThisRoad]

Please go back and read the comments under your post from the other day; 'didn't make the cut'. I hope that you've already seen my comment, I posted back to you a just yesterday.

Be informed, armed and ready when you sit with your doctor so that you can explore the option and possibility of continuing on with your meds for a while longer; seeing if you can achieve an undetectable status.  No you didn't reach the 2 log drop at your 12 weeks but your treatment meds are definately working.

Sounds like your head is in the right frame of mind to do a few more weeks.  By continuing on with your treatment, the only thing you have to loose is the virus.

Let us know what you and your doctor decide. Be strong; stay strong!!

[honey1616]

Steve, That is really kind of you!  haha Cheers to water!  It is funny as I also have such a mental picture of each and everyone of you guys and I feel I truly know you.  Its amazing how this board can give us the support that sometimes our closer family members...can not.  I really don't know what I would do without the board because I have gone through so many mixed emotions after finding out I had it and honestly I probably would be very depressed if I didn't have everyone to talk to.  I hope you took Indiana's posting to heart and you are going to demand to your dr that you go for the 24 week before making decision!  Please!!It couldn't hurt anything right?  Then You will definitely know where you stand!  Take Care Steve and I will be thinking of you!!