for those who've treated more than once

[orphanedhawk]

My question to those who've treated more than once is: was tx similar for you each time?
Did you find the sxs easier, harder, the same or????
What about how it effected your wbcs or platelets?  Was each time much like the last?

hate to even think about txing again but I would also would love to be HCV free.

Thanks in advance.      OH

[susan400]

As you know, I've treated umpteen times.  The symptoms weren't always the same amount in intensity.  Sometimes, like when I was on daily highest dose Infergen and 1600 Riba.., symptoms were pretty intense for me, I had to have both Procrit and Neupogen.  When I was in the Prove 3 Group C Telaprevir trial..,no Riba, so I didn't have that in the mix and also, since I was kicked out of the trial at week 6, due to not clearing, because of no Riba..., I didn't have to go through as long of a TX.  The Telaprevir did give me a rash.., knew it was the Telaprevir since no Riba.  But, I would have continued on with it.., rash and all, if I'd had all 3 drugs and had been given the opportunity.  When I was doing the Peg-Intron + daily Intron-A + Riba, that was pretty intense as well.  I did a treatment with Peg-Intron, Actimmune Interferon and Riba, that was pretty intense.  However, when I did just Pegasys and Riba, it was hardly like I was even treating.  When I was doing very low dose of maintenance inferferon+ 1 Riba a day, that wasn't hardly any effect either.  Anyhow, almost all of my treatments have caused me to get some anemia, in varying degrees and almost all of my TX's have caused my white's to drop in varying degrees as well.  I didn't lose my hair unless I was on the TX for at least the 5 mon. amount.  I didn't always lost weight, but more often than not I did.  It always affected my mood..., every time.  But, I didn't always get so depressed that I needed to take AD's..., particularly after I'd already done this so many times that I knew what to do to alleviate my sadness feeling...and could overcome any depressive symptoms.   I don't know if I've helped any.  Like you, I'm still not SVR and still looking at having to TX again on some day in the future.

Susan400

[HCV65]

I am on my second treatment. The first one was 12 years ago (1997). For me it was much worse then than now in how I feel, but I am in much better physical shape now. Back then I did not do any exercise and weighed 185-195 lbs, now I weight 160lbs. However, back then I was level 0 and now level 3, so I had no problem with platelets, WBC and RBC then. Now my platelets, WBC and RBC are going down fast. Back in 1997 I took 3 interferon A shots per week, now 1 shot per week of pegyinterferon, A HUGE DIFFERENCE! Then I would take 1 1000mg pill of Riba once before going to sleep, now 5 pills spread out (3 in the morning and 2 in the evening). Side effects now are almost non-existent, then they stopped the treatment altogether due to a severe rash. This time I controlled the rash with Zyrtec 10mg daily for one month, then I stopped taking it and do not need it anymore. Hope you have a good experience like me! Best wishes.

[evangelin]

Hi Orphan,
Joe has used Peg-intron, Pegasys, and Infergen and Peg-intron made him the sickest.  It may have been largely due to not taking an anti-depressant that first time.  It got scary without it and we would never consider that again.  He had really bad leg pains and his shot day was horrible with Peg-intron.  
Joe stayed anemic throughout each Tx and platelets dipped a few times but not severely so.  He never needed Neupogen but he got dangerously close during his last 15 month stretch.
Pegasys was easiest for him although by no means fun.  
All the best,
Ev

[orphanedhawk]

Hi,
If you ever get close to where you think you will need a transplant, I would encourage you to look into the live liver transplant option and you can certainly contact  me!

There are a number of advantages mainly not having to wait until you are so sick and worrying about a donor coming along.
I was fortunate to have a generous daughter who actually thought it was kind of cool.

Hopefully the new meds will work for us both and your liver will improve on its own.

Thanks for the input.
OH

[tulsatime]

Hi, I just wanted to say congrates on getting the new liver, I want one too.. LOL
I treated several times and relapsed. I am comp cirrhosis DX 5 yrs ago. I Treated 24 weeks the first tme (GENO 2) . Second time 54 weeks. And took  6 month between TX.
I felt like the second Tx was easier. Maybe because I was use to it I don't know. But just like everyone said this liver is new, So it might be different than last time you treated. I know the  fear about going and doing it again. I am waiting for the new drugs. If they let me treat again. Or just wait till I need a new liver. My platelets are very low so I don't know if they will let me treat again. Guess we'll see when the new drugs come out. Good luck to you... Debi

[orphanedhawk]

Walrus,
  Wow, 84weeks. I couldn't imagine jumping into anything like that, not now especially.

I'm hoping to wait for the new meds but I would like to tx prior to any liver damage.
At this point I'm just gathering information.

Most the time I feel great. My complaints are minor.

Bill, thanks for filling me in on your experience. I'm sorry it hasn't been successful for you, yet. Hopefully when the protease inhibitors are released, we'll all reach success.
Andiamo is my inspiration!

Thanks for the replies. I appreciate it.
OH

[Bill1028]

OH, I had minimum sides on the first time treating although I had to take procrit from the 4th week on every treatment attempt and didn’t miss a day of work.  The second time was actually easier and was for 76 weeks.  The third time was only 13 weeks and for the first time using Pegintron instead of Pegasys.  I was in the placebo arm of a BOC trial and failed to clear at 12 weeks, which is interesting because I cleared before 12 weeks twice on Pegasys.  I found the Pegintron caused more nausea although it seemed that my mind was much clearer than Pegasys.  As far as platelets go, since I have cirrhosis my platelets were under 100 prior to the first time treating and they did go down to 40.  The following treatments the platelets never got down below 80 and after treating are above 115.

[IAmTheWalrus]

I treated my new liver and failed after 84 weeks of the standard TOX. I was not treated before because of advanced stage and HCC diagnosis.

I am hoping that the treatment with the new drugs will be less difficult. If nothing else, it will be a lot shorter than 84 weeks! :)

If you can wait, do so and give yourself and your hubby a break. With mine it seemed like I was just recovering from the TP and the complications and went directly to the suffering of the TX.

Hope you are doing well. You are a real trooper!

[orphanedhawk]

Yes, Goof and LB,  having a new liver could make a difference. My old one was already decompensated when I was diagnosed and I didn't treat for another year.I'm good at denial.

I wasn't thinking clearly when I wrote yesterday. I'm being weaned off of prednisone and getting headaches,~nasty stuff.

Honestly, my biggest reason for not treating is my husband. He's been through so much with me the poor guy needs a break.

My doc,( I can't really call him wonderboy anymore, now that he's grown a goatee with gray hairs in it, can I?) wants another viral load at my next lab.
His initial advice was to put off treatment for a few years until the new meds are approved as long as my liver stays healthy.

And dear, Buggerboo, I am a bit of a food snob (comes with the neighborhood) and actually ate better when we had our own garden. The big change is now I am eating a bigger variety of food than when I was sick. For the most part, I'm organically correct.

Andiamo, thanks for replying. I hope to be headed to the DR in a year or so, visiting my son, his wife and best of all my grandtoddler, who'll be living there.

OH

[Andiamo1]

I have not been to the Dominican Republic.  It was listed as "off limits" by my insurance company; probably due to the problems in Haiti - just guessing.

[ladybug52]

Goof said what I was thinking. The people who treated multiple times did so with the same liver usually. Have you asked Mike Simon about this? I'm trying to think of another person who treated with a new liver, Brent maybe?
I think the difficulty with your treatment, in part, was that your liver was just too sick to begin with.
Have you talked to your liver dr yet? Another plus, is that you are eating better and hopefully are in better shape overall, not just the liver.
I want you to be HCV free also!
Keep us informed (and by that I mean keep me informed because,........it's all about me!)
Bug

[GoofyDad]

I would expect you would have a different experience being now non-cirrhotic. Tjhere was a time when they wouldn't even tx compensated cirrhotics, let alone decomps (I think that's accurate). Gish was at the front of changing that - but anyway getting a decomp cirrhotic through tx is a challenge. With a new liver it's probably going to be easier sx - wise - but it probably brings it's own challenges with rejection meds. etc.  Keep that shiny liver shiny....

[orphanedhawk]

Thanks for the replies.
My ALT levels have been jumping around. Other than that I'm doing great.

I'd like to wait for the new meds before daring to tx again as long as my shiny new liver stays healthy.

Andiamo, I am always amazed that you actually txed 8 times.I wonder if that's a record.
Off topic, have you been to the Dominican Republic? It seems like its in your waters.

[Andiamo1]

I treated 8 time in total.  All were equally bad!  Actually, the first few times weren't bad at all: pre-Riba and lower dose level.

The last time I treated with a protease inhibitor and now I am SVR.

I hope all is well with you.  I haven't been around much the past couple of months, but I think you have been absent much longer than that.
Take care and get rid of that lousy disease.
Eric

[spcecst2]

I did tx 3x and finally got the svr, but the last round I did a little more meds to help knock it downfast!!!! It can be done!!!!!!!! I really think I aged my body doing those rounds. My joints hurt and I never had that before tx!!!! Or I'm getting old and can't face the reality!!!!!!!! Good Luck!!!!!

[Stronzo1950]

I have been thru TX 3X and none of them worked and I took ribavarin on each of them.
Unfortunately the sides were awful for all 3.  Wish I could say it got better but it didn't. On the last one, Interfergen, I gave myself a shot everyday and became anemic and my Dr put me Procrit giving myself another injection everyother week, which helped me not to be so tired.

Good luck with your next treatment, me I will wait until teltrevir becomes FDA appoved. So for now I am just trying to stay healthy so I can be a good candidate

[HCA]

I have treated multiple times.
(I hope I have nailed it this time with telaprevir)
I have found the sides effects to be progressively worse.
I worked during previous treatments-this time I am far too debilitated.
I have always taken a hit on wbc and platelets but not too bad.
It is all too unpredictable though-you may have the reverse experience.
If I were you I would probably dive in as donor livers tend to fibrose more quickly.