MY MAN RELAPSED 7 MONTHS POST TX.....DAMN IT....NOW WHAT????!!!!!!!

[tina-b]

My man had his 6 month (7 actually due to doctor visit timing) post tx PCR
come back positive with a 29,500 vl today geno 3a.

This is his second relapse, first time immediately (1 month) after
24/24 of peg and riba (1400 daily) vl came back  200,000. He finished 48/48 of same combo peg-intron and riba on 12-28-04.

This time his PCR was neg at 3 months (really 4 due to doctor visits
timing) post tx, now this is positive. His ALT/AST was 29 and 29 at 3 (4
really) months post tx. Then this time (7 months) AST was 93 and ALT was 73. I just new
that it was back and the Heptimax results confirmed it.


He cleared this damn thing at 4 weeks and was undetectable all the way
through and even 4 months post tx, now this. I have a call into the doctor
since his next visit isn

[ps9670]

    Hello, nice to meet you, I'm Patty,  unfortunitly, many of the 3's are relasping, hard to hear, but true, My husband is a Geno 1a. one of the hardest to treat, now I'm begining to wonder if any are harder to treat than others, now that so many of the 3's are relasping as well, anyway, we are about to start our third journey with Tx...Then when reaching undeteced,which he will, we are going on a maintance dose to keep him cleared of the virus, not many Drs will do that, but hey, anything is worth asking for, those with HEP C diserve whatever there is available..My husbands sides have always been very minamual, so off to a good start anyway...Ask your DR for a manitance dose, well worth trying again...Stand up for yourself,or your loved ones, no one else is going to do it, always know, you don't have to settel for being told " NO "...from the DRs. patience have rights to be treated, just like strep throat, after three time with it, will they stop giving you antibiotics to fight the illness, HEP C is " NO " dofferent in my book, I use that phrase alot to our HEP C Dr...He knows exactly where I'm coming from, BE STRONG..Hang in there....Sincerely  Patty

[cuteus]

It sounds like you lucked out in getting that appointment judging by what califia stated in the other thread. Keep us posted, and have a list of questions ready for him. Someone here had saved "things to ask the doctor" if you can't find the list in archives.
GL

[GoofyDad]

I'm well. Hanging in anyway and feeling perfectly healthy. Thanks for remembering me. The NP at my GI office was their strongest HVC person and she left. Now I've got an appointment with Dr Gish in San Francisco in 2 weeks. I'll almost certainly treat with him. I think he's pretty aggressive, for better or worse.

For now I'm trying to live it large while I can. I'll keep you posted.

[cuteus]

how are things going with you? had time to absorb the biopsy news?
I hope things are good.

[LvdByGod]

aw tina, what can i say?  my heart goes out to you both. you know i have been following your story for a long time now cause i am 3a too. and i had a "breakthrough" and it came back "durring" treatment at 7 months into it. now i've been continuing standard protocal and due to stop this october...it will have been 2 years on treatment with no break.

you know i have read that 3's "relaps" more than the others and 3's cause more fatty liver than other types...so there is deffinately something different with us 3's. but supposedly we are an "easier" type to get rid of???

i am just crushed to hear of your news...you both will of course be in my prayers...please let us know what the specialists say? i have a feeling i will be a relapser too...esp after that breakthrough...i think that lowered my chances to only 15%...and then it will be infergen...and quite frankly i'm scared of that stuff and some of the reports from those on it...i've already had it with this pegysys and it's side effects...it's effecting my whole life now that it's gone on soooo long...but it's either this or liver transplant/cancer...i choose this!

tina, my love goes out to you guys...please keep us up on what happens now...i am so so sorry and worried for you both...

your friend, sandi


p.s. i am stage/grade 3/4 too...as of a year before starting treatment in 2003.

i'm praying that you will hear some good news with the biopsy report...that would surely be a blessing...i'm wondering if we do maintainance and keep our alt and ast in the normal range if we can go on and live a normal life expectancy even with this horrid disease? these biopsy reports will be essential to make our decisions...

let's stick together and keep each other posted on anything we learn...ok?

[GoofyDad]

I have no info to offer. Just to acknowledge what a dissapointment this is. So sorry.

[DallasStar_]

Tina-My heart goes out to both you & your husband. You have been beside him through it all...I will keep the two of you in my prayers..

Stay Strong

Dallas

[honey1616]

Yep,,,,I'm with you Tina,,,10 to 20% seems very high.  I was told by my dr,,,after 6 month mark,,,1% chance.  After 3 month mark,,,,something like 5%.

[cuteus]

unless things have changed recently, the stats handed out at my research hospital is 2 to 5% relapse after the 6 month negative mark. That doctor is either avant garde with the latest info, or not knowledgeable enough. I hope is the latter.
I can't imagine waking up every morning and thinking: "I still got it..." what an awful phrase to absorb.  I hope it gets easier with time and the news that new meds might be coming soon.

[tina-b]

Thanks everyone.

My husbands "regular" hep doctor is off on medical leave of all thing. The one filling in for him finally called back last night. He spoke with my husband.

He doesn't have any opinions to offer. Said "wait" and talk to regular doc when he get back in September or October. He did mention infergen daily for 48 weeks might be an option, or something like that.

He doesn't think jumping right back on meds is the thing to do right now. He didn't elabotate.

The doc said he thinks "late relapse" is about 10 to 20 %. I think that is awfully high.

So far the plan in to make an appt with the regular hep doc and then "demand" a bx to see where everything is at. I will keep you all posted.

[couchpotato]

Just really sorry to hear about the relapse, you both have my sympathies.

Mattie

[poolcue]

TINA
I'm so sorry,
Diana

[jtjmack]

So Sorry to hear this. I sincerely hope that all goes well.
Thelma

[rearfang]

So sorry to hear your awful news. It must be so utterly frustrating not achieving SVR after 2 rounds of tx. Thank God he feels well, anyway, and I hope his liver has done some healing.
My heart goes out to you both.
Lauren

[Califia]

I'm so sorry.   Wishing you both much strength to get through this nasty setback.

[scruffy]

Sorry to hear such news tina after all you have both endured. I pray his liver has been helped by all the peg and I hope the solution to your dilemma comes soon. You are one hell of a good mate. Luck from above to you, frank

[cuteus]

so much work and hardship and not to be rewarded with a permanent SVR is tough to take. I know Dr. Cecil mentioned that his late relapsers are usually level 3 or 4, he believes the scar tissue still harbors active virus. What a predicament!
So sorry to hear the news.

[honey1616]

I certaintly hate to read this topic!  You guys worked so hard and made such a team!  At times,,,,it was hard to tell who was treating,,,you or hubby.  Seems like those 3's at times can be stubborn of not clearing!  I can't remember,,,,Does he have fatty liver?  I'm not sure about infergen because he was definitely a responder of the interferon!  Maybe will have to do 72 weeks,,,I hate to even say that sentencing because I know that one would be hard to gulp!  I'm sure others will be responding with some expertise and of course your dr.  should have some great answers for you!  Tina,,,I'm so sorry that this is back for you to deal with!

[genedog]

that is just --- --- --- --- --- not fair, best of luck to you