Please help us...

[Lori V]

My mother is HCV positive,48 years old,1a..stage 3 grade 3 and a non responder to Peg-Intron/Riba.
She recently went 24 weeks of tx and was removed due to anemia, macrocytosis and her VC rising.
We just got her latest blood work back and all of her counts have improved except her VC went from 550,000 to greater than 5 million in a 2 month period. Her AST and ALT's have risen and her Ferritin level is 475. Normal range is 10-291. Her GGT has gone up too, but not considered high. All of her other iron tests are in the normal range. Right now all of these tests are higher than they have ever been.
Should we consider Pegasys? Her doctor doesnt want her to do it and says that her chances of responding are very little.
How much damage is the virus doing to her body seeing how her counts have massivly gone up in such a short time frame?
What does her high Ferritin mean exactly, and what effects is it having on her...being that it is high?
She has these deep dark circles under her eyes that wont go away, is this related?
I am VERY worried about her and her doctor doesnt seem to be, should we continue on with tx or wait in hopes something better will come along and the progression slows by itself?
Any advice will be of great help....
Thank You in advance...

Lori

[Jim55]

Sorry to hear about you momz. I would say to stay on Tx if she can tolerate it. It sounds like her liver is not processing iron right. Have her doc check her serum calcium level. if it is low have her take a calcium supplement like 1500 Mg per day and drink OJ or take Vit C, these will help her body to absorb the iron.

Hope she Gets Well.

[wkwithit]

The latest research shows that many people who didn't respond to Peg are clearing with Pegasys. Because your mom is stage 3 it's worth a try. Don't worry about the viral load increase. The number means little.  I've seen people with 67 million clear.  Viral load should be done at the beggining of treatment and after 3 months of treatment by the same lab. You are considered a responder if virus goes away completely or it drops 2 logs. If it does not, your chances are now about 1 in 100 but I'd rather have 1 in 100 than none.  If your mother wants to try the Pegasys,I would recommend waiting a few months to recup. She will probably get anemic again.  Her doctor should consider using Procrit early in the treatment so she does not get so weak. About 50% of patients need Procrit during treatment to get rid of the anemia and prevent dose reduction of the Ribavirin. It is known that in order to expect successful treatment outcome you must take at least 80% of the meds, 80% of the time. It is very important that your mom NEVER forgets to take any capsules.  You should also look into "Maintenance treatment", small doses of Peg meant to keep the Hep C from advancing, not curing it.  Good luck to you and your mom.

[Indiana]

HEY THERE BUDDY!! How goes it? Have you fully recovered from all the crappy sides?
I FINALLY finished and was still clear at 6 months post tx. I think I WIN too!
Did you ever finish that disneyland you were building in your backyard? How about the peeing statue we talked about? I still think it would have been a nice touch.
We recently had a discussion here about Riba Rage and how it affects the kids. I think it would be cool if you told everyone how you have probably made up with your daughter after the occasional problems you had on tx.
Glad you popped in.............

[whitesnake]

hi sorry your mother didn,t respond but some people will remember me and i thought i would give you a positive i have recently had my months and i have now been clear for 12 months it was hard work but worth it DON@T GIVE UP
good luck
SIMON

[susan400]

Hi there.  I was on Pegasys and my viral load and LFT's both went up.  So, I switched back over to Peg-Intron, but since I've been a chronic non-responder my doctor has added in regular Intron-A daily in addition to the Peg-Intron.  I've had the best drop in my viral load in years, but as of last count still haven't quite made it to undetected.  Last count I was down to 13,000 copies.  I'm hoping my PCR that's coming up this week, will show FINALLY a remission.   Good luck to you and your mom.
Susan400

[Galen]

Cancel the second question.  I read your answer below.  I'm glad for you that you only have to do and extra week.  Wonder why, tho.  Did you miscount or something.  Doesn't seem like 1 extra week would do much.  Just curious.  We are still neck-in-neck.  I will finish the shots a few days earlier, so yea for both of us.

[quak]

Hey, I have a friend who started out with Peg-intron and did not clear at 12 weeks 1a.  She switched to Pegasys and cleared at 24 weeks.  She must continue with Pegasys/combo until 62 weeks in order to achieve SRV.  I pray she does.  All the best.

Lori

[Galen]

Hey Lori, did your friend have a 2 log drop at 12 weeks?  
Are you going to be able to finish up this week?  You've been in my thoughts.

[willing]

Hi Galen: I don't believe there is any standard protocol for relapse/non-response along the lines of the nih/european consensus protols for initial hcv treatment. One of the other two ifn variants (2b or infergen in her case) should be worth a try along with more intense dosing. She  should be able to determine within 4 weeks if she's responding to the new tx. Also, I believe susan400 on this forum is a pegasys non-responder who successfully switched to peg-intron. Such a flat vl curve is pretty discouraging.. here's a <a href="http://www.frontiernet.net/~monty/hcvpipel.html">link</a> that lists the status of new hcv therapies.

Hi Lori- I know it's only natural to be alarmed at a sharp rise in VL but, as others have said, there is pretty solid evidence that this does not indicate progressive liver deterioration. "There is little evidence that virologic factors, including viral load, viral genotype, and quasi-species diversity significantly affect the risk of progression of liver disease." This quote is from the last year's NIH consesus conference on <a href="http://hepatology2.aasldjournals.org/scripts/om.dll/serve?action=searchDB&searchDBfor=art&artType=fullfree&id=ajhep03600s3#head1">HCV management</a> and is representative of the current "standard practice". Best wishes to you and your Mom (ps it's touching to see such devotion - she's a lucky Mom!)

[TravisB]

Hey Galen:  I'm sorry about your friend's situation.  After I relapsed, I went on a search for a possible round 2. I spoke to both researchers and doctors and did some research on the web.  I did not find any measurable difference in the success rate for changing from Pegysus to Pegylated.  In fact for my genotype (2a) there was hardly any differnce between Pegylated, Pegysus and Rebetron on the first or second TX.  The one thing most researchers suggested was longer TX and higher doses the second time around.  But they did not give the impression that I had anything more than a 30% chance the second time around.

As I'm sure you know, your friends v.l. drop at week 12 is nowhere near the two log minimum and barely qualifies her as a responder.  It doesn't seem that interferon is the answer for her.

In answer to your last question, I was fairly sure I hadn't cleared and was very surprised when I tested clear after TX but not at all surprised when I tested positive again two months later.  The reason I knew was because I had bascially the same symptoms before TX as during.  Also, because TX was not adversly affecting me that much (anemia and all that stuff) I couldn't blame my symptoms on the TX.

Your friend is lucky to have you doing this stuff for her and I wish her the best.  You are also in my prayers for the end of TX test.  If you can, try to stall taking that test for as long as possible.  Studies show that most people who relapse do so in the first 3 weeks after TX so if you take that test 3 weeks after finishing and test clear, you'll have a much easier six months as you wait to take the big test.  Take care. Travis

[DH Bill]

I'm really excited for you and Lori getting so close. In reading an earlier post it sounds we have more in common than hcv and geno type. "The catholic upbringing" HA HA.
Bill

[Galen]

Sorry to break in, but there are no threads left today and my note is related.

A friend of mine has compledted 13 weeks of Pegasys and was contacted by her doctor's office today to tell her to quit tx.  Her starting VL was 2,800,000 and her 12 week was still over 1,000,000.  She is understandably upset, but had told me only yesterday that she didn't think it was working.  I have not kept up with the latest news on tx recently and wondered if anyone else had any news for her.  Her last bx showed stage 3, she's a 1b, and is 51 years old. (I am posting this with her knowledge)
My questions are: 1. Has anyone failed Pegasys and gone on to SVR with Peg-Intron? 2.Is there a standard protocal for non-responders to Pegasys and what are the statistics? 3. If the protease trials are ongoing, are there any clinical trials going on in the states? and what phase are they in?

Another question I have for those who have finished tx, both responders and not.  I hear many times that those who did not respond or were unable to achieve SVR, that the person "knew" they were not responding.  Are there many out there who felt that way or the opposite and what were the final results?

[TravisB]

Hey Lori:  Sorry about you mother.  When you are not successful in TX it is very common to have a spike in Alts and viral load often much higher than when you started TX.  These numbers usually return to preTX levels withing six months of stopping TX.
Viral load is not thought to be an indicator of damage being currently done so don't worry too much about that for now.

As for the circles around the eyes, that's all about the general fatigue and temporary damage caused by TX and it will go away as the drugs fully leave her body.  That takes anywhere from 2 to 8 months.  It took me 6 months to fully recover from TX and my experience during TX was a cake walk compared to most stories I hear and read about.  So tell your mom to hang in there and remember that most if not all of the tx symptoms will pass with time.  Good luck. TRavis

[mofo]

Hi Lori. I'll share what I think I've learned, and hope it helps.  It is common for those who do treatment, and not respond, to see an increase in viral load. Even a dramatic one. Science is unclear as to why this happens, or what it means in terms of progression. I know it bothered me to see such a high viral load with increases in my AST & ALT. How long has it been since a biopsy was done? Thought on this seems to be that every three years, it's worth doing, and I don't think anything available tells us more about the liver than this.  As far as the Pegasys goes, I've heard that some have an easier (HA HA) time of it.  Some have said that the side effects were easier to tolerate than the peg. If anyone was a non-responder on Peg, and a responder on Pegasys, I'm sure they will chime-in. I don't have any personal experience here. I felt compelled to reply, as I know how frustrating it is "not to know." Wishing you the best!

[Lori V]

Hi Maj Neni, and thank you for your comments.

My mother was diagnoised last May and had her biopsy, ultra sound, etc performed then. The stage 3 grade 3 was determined then and she hasnt had another one. She immediately stopped drinking and has had a very good diet since then. We take every effert in preventing her from digesting any of the 'bad' foods.

Her very first Viral count was 3,900,000 (5/02) and at that time all of her counts were within normal range except for her iron saturation and Iron Serum (high).
She started tx in January and had her second PCR test done in May (5/03), it was 200,000. We were pleased even though she was then having problems with her blood work. It was very clear that the anemia was becoming a problem but her doctor didnt want to do anything about it, and kept putting it off. One week shy of her half way point she was removed from all the meds as she could barely function anymore. She was constantly dizzy, having major headaches, lost all color in her skin, tingly arms and feet, etc.
The doctor wanted another PCR test (6/23/03) and that showed her VC at 550,000. It was clear the meds were no longer working, and she was already removed from them at that time anyhow.

This last PCR test done 8/25/03 showed her VC at 5,000,000 with all of her other tests back in the normal range except for what I described earlier.

Her doctor suggested that she do what you had said, look for some studies. We did that, and nothing is available in her area.
The option is hers whether to try Pegasys or wait. As I said earlier he thinks Pegasys wouldnt work for her. And her only other medical option would be to wait for the Protease Inhibitors.

The alternative route is out of the question as she just cant afford it.
She went through massive side effects and her hair is still falling out. Her doctor said he wanted her to wait atleast 3 months before trying anything else.

She feels better now that she is off, but still looks sickly.
I'm worried that the disease is just reaking havic in her body and progressing quickly with her VC rising soo much. Should I request another biopsy??
With some of her counts being higher now than before the start of tx, should I be concerned with the progression rate??

Thank you soo much for taking the time to respond, I sincerely appreaciate it.

Lori

[MajNeni]

Hi, Lori,

I'm really sorry your mother didn't have a Viral Response with the PegIntron/Riba treatment (tx).  Her liver may have had a chance to recover a bit, at least to rest.

The VL (your VC) of 550,000: was that when she was at 24 weeks and still on tx?  That would explain a lot.  People who still have significant VL at 24 weeks have a very low probability of responding on that protocol, so they stopped tx.  When the tx drugs wore out of her system, the remaining virus multiplied - doubling roughly every 2 hours until she reached the VL her body could hold in check.  
Is 5 million comparable to her starting VL?

I see she had a lot of anemia; did her doctor put her on Epoetin alfa/Procrit?  It helps some of us keep the red blood levels up so we can stay on tx.  The macrocytosis means larger than normal red cells, which are not fully mature; they are poor oxygen distributors, but they often appear when the body is trying to make a lot of RBC's fast to catch up.  

The Ferritin refers to stored iron.  My number for Ferritin was in the 700's recently, but it did not raise an alarm.  More importantly, my available iron was low (iron/Fe), as was the protein (Trans.sat./transferritin saturation) that transports iron.  I have been on Procrit for many months, and with these results, had to start taking iron supplements in spite of the high stored iron.  I've had macrocytosis and a menu of other immature red cells along the way.  Now my HGB has come up to almost normal, and I feel pretty good.  We have to follow it up; this is recent.

As to whether she should take on tx with the pegasys combo:  there is very little data on comparisons between the two.  There is a little hint that Pagasys may help those who failed with PegIntron, but not by a large %.  You might look at the Roche site, or under Pegasys, and look for "Relapse".  I think there may be a study coming up.  I'm on Pegasys and find the side effects more tolerable than I did with PegIntron; but the anemia and neutropenia came back just as strong.

If there is a University/Medical Center near you, inquire there at the Hepatology department for further advice and ongoing studies.  Generally, patients are made to wait out a six-month "washout" period between treatment protocols; but given her stage/grade score (was that before the tx?), she will want to find something to prevent further liver damage.  Just while she is waiting, she might benefit from homeopathic/Chinese meds.

Enjoy your Mom now.  Make sure she lives a "liver-friendly" life from:  careful with the medicines she takes; avoid alcohol, chemicals and drugs; drink and rest plenty.  

And all of you, laugh and love a lot, it boosts the immune system.

Let us know how things go.

Maj Neni