4 Week Post Tx PCR , No SVR - Please use for other topics

Not good. 97600 IU/mL.  I'm not surprised, but am bitterly disappointed. Fittingly, I was on the toilet when my wife handed me the phone.  Infergen, maintenance, or nothing next?  Doc recommends maintenance, said to take some time to consider.  I was just starting to enjoy being off tx, and I just started getting back to work, so I think I'll just take a few months off, do some research, then decide.  I may have a biopsy, see where I stand.

For those who don't know me, I was a slow responder, did full Pegasys/Riba 1000 (then 1200/1400 last 2 months), total tx 84 weeks.  I'm 56 years old, male, 1a/b, Stage 4, don't know grade (last bx in '98), infected since 1970.

Sorry to use a thread, didn't seem to be a good place to slip this in.  Please feel free to hijack.  Peace.

dA

[cuteus]

NO! Oh no!@@@
I was so sure this should have been it for you! 72 wks! what more could you have done??? I am so sorry, is not fair!
You had a spot on cloud nine for this month, still do, reserved for you, and ETA still pending, but it is coming!

[cuteus]

sorry 84 wks! i had forgotten you were a combo deal also. Email Dr Cecil for his opinion...

[jmjm530]

Really sorry about the news. Hopefully your extended treatment allowed you liver to heal a little. Maintenance is a little controversial advocates on both sides.

I think your idea about taking a little time off, doing some research and getting a biopsy is a good plan. Depending where you live, you may also want to consult with either Schiff in Florida or Afdhal at Boston's Beth Israel/Havard. Both not only run a lot of trials but are testing the new Firbroscan machine which is a special x-ray device used to determine fibrosis level.

And for what it's worth, I recently talked to a doctor/researcher who said he's holding back on re-treating because of the new drugs which show so much promise.

-- Jim

[v eggie dip]

so sorry about your news, wish there were something I could say that would help...

Beth

[cuteus]

DA; I can't remember where your team is, but have you tried the Hepatitis C Center? that is where girlwithhepc used to go to. And there is Dr Dieterich at Mt Sinai all those big minds might come up with a feasible plan. Some are now recruiting for the new drugs, but you need time to recoup completely, you looked so well at the March! The tx must have helped your liver!

[NYgirl]

I am combo person as well...we sure don't have it easy do we?  

I don't start treatment till next week but let me tell you my heart is bleeding for you like I've known you all my life.  It's so damn unfair to work so hard like that.

Don't give up.  That's all.  Just don't give up.

When my time comes if I have the same result...I just hope that someone says that to me.  I have a feeling I'd need it to be said.

I am so sorry.

[Tallblonde]

I'm really sorry to read your news and can only imagine how frustrated you must feel.  I hope it gives you some comfort in knowing that your 82 weeks of treatment most likely improved the condition of your liver, even if it didn't yield an SVR.  And remember...TonyZ and others have eventually been cured after relapsing.  You'll get there, too.

Best wishes to you.

Susan

[GoofyDad]

dA,
I'm new here so don't know you. But wow - how unfair can it be? I won't pretend to know how this would feel to you, I simply don't. Surely it's terribly difficult.  

I was at a class a couple nights ago where they discussed the histological responses they see without achieving SVR. Studies are showing damage regression occurring during tx.

I do think you're right to take some time to decide what's next. Take the rest you've earned, then keep on fighting. You'll be in my thoughts.

[LvdByGod]

i'm so sorry to hear your news...it makes me so sad...it must be so hard to deal with i'm sure...i pray for you DA, i pray you will be able to get through this emotionally and that someday soon you will be able to get rid of it...i pray that you find a new tx soon that does the trick and kills it dead...

my heart goes out to you DA...
sandi

[Forseegood]

Just wanted to chime in here that I am so sorry as well. As has been said, the new drugs are showing lots of promise. Talked to Dr. Michael Gale of UT, one of the inventors of the protease inhibitors that Vertex has in trials, sounds like a great drug for us and it's not too far away...and you've no doubt bought time with your treatment. Take heart.

[friole]

I am so sorry.  I cannot imagine the disappointment of 84 weeks to not achieve SVR.  Like the others, I hope you have done great good to your liver.  While you are resting/waiting/healing from the meds perhaps you can start on some helpful herbs including milkthistle to protect your tender liver.
Kathy

[friole]

IT sounds like your treatment is the bare minimum.  I am sorry you are feeling so weak.  Surely they are doing weekly blood counts on you - yes?  The hemoglobin (marker of the amount of oxygen in your blood) drops pretty fast in the first few weeks, and I would be concerned that your hgb is dropping rapidly.  I also don't understand the radical bruising and pain in the shot area - I hope someone else will come along with more experience.  Do you always pull out to make sure you are not in a vein?  Are you using the fattiest place you can find?  

I am hoping the treatment levels out for you soon. ANd kudos to your husband for being there for you.
Kathy

[cuteus]

try not to feel too guilty, you are doing this for you and them, so that they will have you healthy for years to come. What you feel now is TEMPORARY. As for the shot site, try not to get any sun on it. Mine got real dark after sun exposure and it freaked me out. After a few months, I could not tell where my last shot had been. Don't push yourself too much, your tx is one of the short ones. lvdbyGod here is also a 3a, but she did get a biopsy and its results have her treating for a longer period. It is  so disturbing that drs don't do biopsies to learn the extent of damage caused by the virus, and their only thought is for tx.
take care

[donAlfonso]

Thank you all for your support, both today and over the past 18 months.  I want you to know how much it helps, how important it is to me, how important you all are to me.  

Scott, I was just barely holding it together when I got to the poem, and then I lost it and just cried, which is what I needed to do.  For today, I'm tired, numb, I give up.  Tomorrow, I get up and start my life again.  Quit?  Never.  I am.  I am.

Kalio1, do what you can, listen to your body, your heart. Let your family help you, love can definitely help you.  

dA

[carpedi]

I have no words of wisdom to offer you. I am only on week 11/48 and I simply can not imagine the amount of courage necessary to complete 84 weeks of tx. I think, truly, that someone who can do that is capable of doing ANYTHING, so whatever you decide to do will be the right thing for you. If thoughts of healing and prayers can help, (and I firmly believe they do), please know that you have mine.

[go-girl]

Sooooo sorry Don, I wish your long journey would have produced better results, hang in there, enjoy R&R

I am so saturated with info trying my best to absorb all that I have learned here, need to be reminded or corrected; is it pegasys that goes thru liver & pegitron thru kidneys? if this is the case does it make a dif if a person has had pancreaitis, as I have, 6yrs ago, can anyone tell me if one or the other would be preferable in my case if they have had the same experience, I will ask GP & Gastro as well,just wondered if someone knew, thanx

[honey11]

Awwwww Don,,,I didn't even want to open this thread!  Between the posts and then Rev's poem,,,,yep its a tear jerker alright! I had just been thinking about you lately and was hoping so bad that you made it to the SVR!  So many weeks you did and such a trooper!  I just don't know if I could have stayed on interferon for the duration you did.  Don,,,you will conquer this!  I'm sure your liver is much better now and won't be long and you will be back in the ring!  Tony is a perfect example and it took him 3 times,,,,I think each time he reduced liver damage enough that the last tx actually got the virus!  ((((hugs))))

[GoofyDad]

I'm another 3a who will be treated longer (48 wks) due to advanced stage, though not all offices follow that protocol. Please try to push for biopsy. Hopefully you aren't advanced and you'll need no further discussion about length of treatment. But if you are advanced, it's best to know now so you can consider getting addtional opinions.

[rearfang]

Oh Don,
I am so sorry to hear your news. I don't know what to say. It always sucks when someone doesn't attain SVR, but after such a long stretch it's somehow even worse. Try to keep your chin up. Rage all you want at the world today, but tomorrow get up and go on. So sorry, friend.
Lauren

[kesd]

Hi Jim: I've been on vacation and just got back.  Wanted you to know my new PCR came back.  It went from 21500-29800.  I am making an app't with the Dr.  Looking for any questions or ideas to bring up....switch meds, increase dose, etc???? Let me know if you need more info....I know it's been awhile since I've posted due to my vacation. My old post is still there too if you want to look back...Post titled 11 week results.  Thanks Jim... my best to all.  Kristin

[snook_man]

Man, read your post and the reality of HCV truely set in for me. See, tommorrow will be my last shot of tx, and then I too play the wait game. All we can do with this dreaded disease is try our best, then roll the dice and play the odds. Man, my heart goes out to you, and I wish you the best... This damn disease is such a hit and miss!! Every person is different, and evry situation differs.
I know it probably won't help, but you gotta keep your chin up!! You gotta feel good that you fought this harder than most can even fathom!! You gave it your all, and will live to fight again!

"You haven't failed, until you quit trying"

[jmjm530]

Hi Kristin and welcome back.

Sorry we didn't see the big drop we were hoping for.

If I'm reading things correctly, this is the second time your PCR has risen from pre-tx. This seems to indicate that the treatment itself is causing the virus to multiply. This can happen.

You probably know my position from the previous thread. My feeling is that given the fact you have no liver damage it only makes sense to continue treatment if you're responding. In other words if it was me I'd stop treatment now to fight another day with  newer, better drugs hopefully available within five years.
Alternatively, you can stop now, and reassess in a few months after consulting with a couple of independent heptologists.

Your other alternative is to continue on to week 24 with the hope you'll be negative by then. But in order for that to happen, you probably should consider increase your drug dose or changing the type of inteferon you're using. And even if you do go negative at week 24, now you're almost obligated to do extended treatment for at least another 24 weeks, maybe more. So that means you're committed to 36 weeks. Even then your odds are decreasing so it seems like a lot to put yourself through considering you have no liver damage.

I'm not a believer in the "kill the virus at all costs" in folks with no or minimial liver damage. I just don't think it's worth risking all mental and physical side effects, some of which may be permanent.

You will hear different points of view with some suggesting more agressive, and extended treatment. No one can come up with the right answer except you.

Think about it, research more if you have to, and then decide.

Whatever the decision, all of us are here to support that decision.

-- Jim

[chellski]

guys, its hard to find words to offer comfort when what you've been thru just sucks (scruffy too, and probably others i may not know) i admire the time you put in fighting this damn dragon, actually i'm in awe.  rev, the poem you posted will now be one of my favorites too - it brought tears to my eyes.
i hope you all know how loved you are by everyone here, and rev & scruff, even tho you've both relapsed, you are always on hand to advise, listen, and inspire. (not to mention the fact that you have never lost your sense of humor which keep us smiling)
will pray for you special tonite.
<3 michelle

[jmjm530]

You might check out a thread I started a few days ago "new drugs, new treatment decisions". In this light, as a stage 2 I think you made the right decision to treat regardless of liver damage. But the fact you're not responsing changes that equation.

-- Jim

[kesd]

thanks jim ...i did check out the other thread you mentioned..very good.  but did i read these new up and coming drugs are showing best results for g/type 1???  Also I don't know how much liver damage can be seen from an ultrasound only...that is what i had and nothing abnormal was noted.  my app't will be soon and i'll just wait and see what he has to say...i thank you so much for all your insight, as i'm sure so many others do.  kristin

[kesd]

my PA did say 10 years for newer drugs.  Is it looking more like 5-10??  The other thing i have to keep in mind is i'm 45 yrs old.  i know tx for older folks is not as effective.  kristin

[jmjm530]

For some reason I was operating under the impression you had a biopsy showing no liver damage. In this new light, you might decide to continue on to week 24 keeping in mind you may face extended treatment.

My concern is still as before -- the fact that virus keeps rising on treatment. I'd like to get an answer from my doctor what exactly are the implications.

If you decide to continue on, do discuss with your doctor switching to Peg Intron cause the virus obviously isn't scared of MS Pegasys. :) Also, maybe upping the riba a little might be in order.

If you don't decide to continue -- or if you continue to week 24 and stop -- then you might consider either/or: (1) biopsy; (2) Fibrosure test; (3) Fibroscan test; to help ascess your liver damage for future treatment decisons.

And yes, your analylitcal mind is still sharp, the first round of protease inhibitors are being targeted for geno 1's but geno 2's and 3's will follow.

-- Jim

[jmjm530]

3-5 years is what many heptologist/researchers are telling their patients. Anyway, I wouldn't recommend anyone to wait that long until they had an assesment of their liver damage, which you haven't yet.

[cuteus]

if you are vested in this tx and want out of hcv now, then switching meds might be the answer, here is what Dr cecil suggested when he thought I was not responding well to tx
ME
My bx was stage 2 grade 1.  I do not want to do another 48 wks if I relapse, the first shot is my best. My sides have been manageable so far, Needed Procrit for the anemia at worst.
Have continued a 37 hr work wk.  Is it too much to ask to give it all the first time?
Dr Cecil's answer:
Ask the docs if they will try 270 mcg of Pegasys per week for a couple of months, or 210 mcg of PegIntron per week for a couple of months or 15 mcg of Infergen every day for a couple of months.
ME
If you, or someone you know is accepting subjects for extended Tx research, please give my name, HIPPAA waived.  I just want this virus gone. If you have any other suggestions on how to proceed in finding someone who will consider this extension, I would appreciate a note.
I will have about two months worth of meds at the end of 48 wks, I am thinking on taking that on my own, but I will ask my PCP if he will monitor me.
Dr. Cecil:
Instead of stopping or doing something that is not working very well it makes sense to change the treatment. Good luck to you. Ben Cecil, MD
he added this:
Ask your doctor to try you on Infergen 15 mcg daily plus ribavirin. It is working on 20-25% of my Pegasys nonresponders.
Ben Cecil, MD
If you want this over now, then changes must be made.
Some reknown hepatologists are not thinking 3 yrs until new meds, they estimate 8 yrs, and they are part of some of the new trials, so they must have some insider info.

to all thinking of tx(kesd, do not take this as addressed to you, please)
Someone posted here not responding to tx or a viral breakthrough and later commented on having ingested alcohol during his tx, anyone on tx, should not chance any  alcohol drinking. this person never mentioned the drinking, only the non response. give yourselves the best chance by waiting until after tx.

[couldn't think of a nickname]

In 3 years, the most promising drug to date might be ready if all goes well. I don't know where your doc got 10, but I am sure he is not up on the latest drugs. Check jm's thread on New treatment options. I am very optomistic on VX-950, as it has been called the best option out of the 9 in the clinic, and they have stated on many occasions they expect to file for approval by 2008.

[kesd]

thank you both very much.  cuteus..i am one too who is commited and does want this virus gone now and open to other options/changes.  my side effects have been very minimal and so far, after week 15, all blood work is normal.  i'll just have to wait and see what the dr says....not knowing and waiting is not one of my best characteristics !!!!  thanks again y'all for everything over the past few weeks.  kristin

[couldn't think of a nickname]

I am so sorry about your results. I just hope that it reversed any damage so you can wait for something better. Keep the faith.

[kesd]

i have only seen a PA at the liver clinic at a university hospital (she's the one who said 10 yrs) and will see the Dr for the first time probably next week.  I do plan on thoroughly drilling him as to his knowledge and experience with non responders and new tx...poor guy, he'll probably be glad when i leave !!! I'm a chemical research ass't for a pharmaceutical testing comp. and have seen drugs go smoothly and others fail at the end of the final phase...i hope this drug you mentioned sails smoothly....2008 is not that far away!! Thanks.  Kristin

[mikesimon]

I'm so sorry about your news. There is no doubt about the effort you made - you're one tough guy. I wish you the very best. May God Bless You. Mike

[whoaisme]

What a disappointment to read your thread. You know Giddy and I were hoping to hear something promising for you. I agree with all the others who wrote that even though you did not clear the virus your liver benefitted from your endurance!
It must be something in the NYC air, Chris' vl at one month post tx (daily infergen/riba 48 wks) is 1 million +. His plan is to have some time off, regain his strength, build up his blood and begin maintenance therapy (one shot a week no riba)around January. The doc is optomistic about the protease inhibitors coming around the bend...looking at a phase three trial sometime in the next year or so. The good news is he was able to return to work part time this past week - so things are looking brighter. He will, as you will, go on and win this battle. You are in our thoughts, Su

[scruffy]

Rev's poem really says it. You can certainly hold your head high.
Love,respect and prayers in your direction my friend. frank

[couldn't think of a nickname]

Kristen, VRTX knows how important this drug is. I have faith they will be able to bring it to market. They already have 2 HIV PI's out on the market.
They say phase I is actually the most difficult to get out of for this type of drug, so I hope they are right.
I obviously have no clue when it will/should be approved, but I wanted to start a countdown so I could "see" it getting closer. Since I had no idea how to pick or when, I thought I'd pick Independece day in 2008-for the parallel meaning. That said, if this blind squirrel did find a nut in the forest, then there are 1020 days until then.

[couldn't think of a nickname]

looks like Schering Plough is about to enter phase II for their PI against HCV. I wonder why we have not heard any results from phase I?

http://www.clinicaltrials.gov/ct/show/NCT00160251?order=6