RELAPSERS Unite Poll

[beeblessed]

Hey Cyber People,

As some of you may have read, I went through tx with noteable good news but at 6 months post now, I have relapsed.  I'd like to thank EVERYONE who has been so kind and offered comfort to me.  I am doing better today.  I thought a poll would be in order now.  Please participate if the criteria applies to you.  Thanks in advance.

Be blessed,
Bee

[Peter2012]

I'm saddened by this news. You are one of the nicest people who post on this site and I remember you were helpful to me when I was going through my treatment.

I too have relapsed, on the 12 week post treatment results.

[pooh55811]

Welcome to the forum.

Just wondering which drugs you are on.

I was on Incivek and I did find that things got a lot better after finishing the 12 weeks of Incivek. I did 48 weeks of total treatment and the last 6 months I noticed I was gradually feeling better every week. By mid summer I was doing quite well. I finished Aug. 25, 2012.

I don't know what you are talking and I don't know which side effects you are having. If you are having side effects, start a new thread, and post them. We can help. We have remedies.

I found that a person really has to get on top of the side effects immediately (rash, nausea, vomiting, depression, anemia, rectal issues) or they can and will snow ball out of control. The reason the first part of my Tx was so bad is because my treating team had no clue how to assess or treat side effects. Plus they did not want to treat them.  Had they known how to treat them and then treated them immediately, I would have sailed through Tx very well.

The dragging and no energy might sick around for awhile. That was a big problem for many of us. Fatigue, no energy, no motivation, no concentration, nothing, LOL. The best way to deal with it, I found, is to try to do something productive every day, no matter how small (dishes, laundry, sweep, cook, etc., just one thing). Acceptthe possibility  that you may have to deal with feeling like a wet noodle on barbituates throughout the entire Tx. Compensate ... get up slowly, rest as needed, don't over do, lower expectations of what is going to get done and what you can do. Leave yourself notes and reminders if needed. Once I accepted that I was not going to get much done while on Tx, that this was in fact going to be my lost year, things were a lot easier. I did not get so frustrated that I was getting nothing constructive done. Anyway, we are treating. That in itself is a constructive step. Try to go with the flow. You will feel better eventually.

It is best to start a new thread when asking a question. This is a thread on relpase. Most people may not see your post. To start a new thread, go towards the top of the page, click on the orange bar "Post a Question) and post your questions in a new thread. Entitle your thread so it will get people's attention and they will know something about what you are asking in your actual question.

This is a good site for information and support. Best of luck.

[Tduck05]

Hi everyone!
I'm new to this highly recommended site.
I started triple tx 8 weeks ago and last week was probably the hardest so far. Draggen'! No energy.
I was wondering...does it get easier or harder?
I'm falling asleep as I type this. Lol
TTY soon!

Duck

[beeblessed]

Haayyyy Karen!!  Good to hear from you.  So glad to hear you are SVR, especially with the incredibly difficult journey you had during tx.  I'll have to catch up on Hector's progress.

Rockymoe -- Yes, you're right.  It does help whenever we kick the daylights outta the virus.  And it is a blessing to be alive.

Indy -- CONGRATS!!!  Hope you also started your own thread in the forum, because others surely will find this encouraging news :0)

Gotta run.  During tx, my life was counted by Fridays (injection nights).  But since finishing tx, I have been playing catch up on projects and can't believe another year has almost zoomed by.

[crossroadsec]

Bee, you've blessed so many on this site. I hate hearing this for you, rockymoe and the others. My gosh, you're words and advice held us up so much!
The new orals sound promising. Look at Hector. He's having less sides than many of us triple treaters did. I talked to my dr about them immediately after getting pulled from tx. I just reached 6 mos svr, but would have jumped at the new stuff if not.
And yes, being alive is the best news of all. Congrats indy!
Karen :)

[indy531]

Attained SVR today! God is great! Thank you my hep C warriors.

[rockymoe]

I had an MRI and my liver is smooth not bumpy and doc says it looks pretty good. Triple tx with VIC was my 8th treatment. I think I have a monster strain.I look at it this way yes it is devastating to hear you relapsed. Some one on forum said those 8 treatments helped. Anytime you are clear the virus helps. He reminded me that I am not losing, I'm WINNING I'm still alive. If I had not treated all those times I might not be here right now!

[Bill200]

"I started my first treatment about 6 weeks to 2 months post transplant."

Mike, that's pretty remarkable to me.  Interferon increases the chance of rejection and the chance of rejection is much higher in the first couple of months after transplant and also higher the first year after transplant.

Also I'm surprised they didn't make you wait and see how the new liver would tolerate the HCV.  Some people's go bad quickly and other last many years before showing damage.

Anyway I think your doctor took a risk but not one that I disagree with.

[beeblessed]

Hey Rocky!  Your situation is unique.  How long did you wait between each treatment??  Have you had the same doctor(s) throughout?  Is there something they can do other than put you through weeks and weeks of meds again??

As for me, the soonest I can treat again would be a couple of years, in anticipation of the new drugs.  Thanks and take care, Bee :0)

[rockymoe]

As you know I had to stop Triple Treatment VIC at 40 weeks. My doc told me if he had not pulled me when he did I would have gone over the cliff. The treatment was killing me. I went thru the week of crying followed by depression then I was angry and now I am ready for treatment #9. I have to wait till the all oral drug is approved. I won't be able to do any trials because of what the VIC did to my heart and can never do interferon again.
The good news I had an MRI done and my liver is smooth not lumpy, there is a little fat but I lost 50lbs on VIC so it's not bad.I was happy to hear that the
cirrhosis is not too bad for now. I was pulled at 40 and I think I relasped at 8 weeks. Sorry to hear you relapsed, we will slay this dragon.

[lulu647]

If you are type 2 and have the opportunity for a 7977 riba trial w/o interferon, I would try it. They seem to be having great results

[beeblessed]

Hi Asuncion,

Thanks so much for your understanding. Do your homework here before jumping in with INC.  Great results but Wicked side effects!   There are high hopes for GS 7977 and I heard about another new drug today (but that one is just in Phase 1).

PJ -- Thanks for your answers!  This starts the comparisons.  

Keep 'em coming people!  It will help more people than just me.  Take care everyone.

Blessings, Bee

[Asuncion]

Sorry to hear you relapsed Bee. It is hard when that happens. This is my story:

How many weeks for each of your treatments?
24 weeks.
Only one treatment so far.

How long before relapsing?
6 months.

Which meds did you treat with?
Interferon/Riba

Did you have to treat longer because of the relapse? If so, was it due to protocol or just your docs opinion?
I am not under a new treatment yet, I am genotype 2b, so I am not supposed to use Incivek or Victrelis, so I haven´t done longer treatments.

My doctor insisted that I tried treatment again for 48 weeks, but I lost confidence in those meds. I want to try Incivek and my doctor told me he supported my idea or that we could wait for a new clinical trial with GS-7977 that he can get me into. I am still thinking about it. My liver has no cirrhosis so I can wait a little.

[PJ1966]

How many weeks for each of your treatments?
48 wks

How long before relapsing?
6 mos

Which meds did you treat with?
Interferon/riba

Did you have to treat longer because of the relapse? If so, was it due to protocol or just your docs opinion?
Am currently in my new triple therapy with incivek.  4 weeks today.  Not sure how long I'll treat as yet, but was undetectable at 3 wks (vs. 8 wks 1st time)

[beeblessed]

Hello everyone.  Thank you all so much for your input!  This helps to put things in perspective and will surely help others along the way.

Mike -- All I can say is.....WOW.  72 weeks and multiple treatments, and increased RIBA.  And so much more.  Incredible and inspiring.  The RIBA kicked my butt big time and I was dose reduced drastically.  When they tried to increase it, I just could not tolerate it and am sure that too probably contributed to the failure.  My docs 1st priority was to keep me "Safe." My tx nurse made it clear -- "It doesn't matter if you get to Heaven with a clean liver.  You'll still be dead."  Or something like that (I forget her exact words).

Thank you everyone!  I am reading all of these responses, and honestly appreciate your sharing your journeys.  It matters.  It helps me process all of this.

Blessings,
Bee

[beeblessed]

Hi PJ, sorry about that.  You just need to post a comment to this one.  My initial plan was to do a "check here" poll, but I discovered I wanted to know more background.

[babs824]

wishing bee all the best, what a tough thing to relapse...yikes.
u guys are amazing, i had forgotten mike was post transplant. so many of u folks hector  nygirl and oh never cease to amaze me. u are in my prayers. hugs, bags 824

[PJ1966]

Not sure how to vote.  I can click the buttons but can't answer the questions specifically.

[mikesimon]

I started my first treatment about 6 weeks to 2 months post transplant. I was low dosed with ribavirin - I think I was taking 400 mg per day (I weighed about 175 lbs). Pegylated interferon was not yet available so I took regular interferon 3 million units 3 times per week which was, I believe, standard dose. I treated for 52 weeks and never cleared.
6 months later I treated with Peg-Intron at standard weight based dose and 600 or 800 mg per day ribavirin. I cleared late - maybe week 30 or later - and stopped at week 53. I knew I should have treated longer but the Peg-Intron was killing me.
6 weeks later I treated with Pegasys 180 micrograms and 1000 mg per day ribavirin. At this time I weighed about 140 lbs. I was undetectable by week 12 and treated for 73 weeks. In retrospect I doubt I needed to treat that long but I found the Pegasys much easier to tolerate and I was afraid to stop. My doctor/surgeon pretty much allowed me to do what I wanted once I became undetectable. Generally type 1 transplant recipients weren't achieving SVR at high rates so everyone at my center was rooting for me. I really had to push to get the Pegasys approved (it was not yet on my insurance formulary and the hepatologists at my center felt that since I cleared with Peg-Intron I should continue that drug) and the 1000 mg ribavirin. I am convinced that the ribavirin dose was the major factor in my SVR - more than the TX extension. I was just under-dosed the first two treatments.

Mike

[frijole]

Bee

I did ribavirin and interferon in 2005-6 and relapsed.  I did 56 weeks, not due to relapse, but because I was detectable at week 12 (my choice).  Although my first VL test post tx was 3 months post, I knew I had relapsed a couple of weeks earlier due to higher liver enzyme tests.  The problem is most of us do not get a lot of VL tests post so we don't know if we relapse at 1 month or 6 months.  I suspect I relapsed within a couple of months.

[orphanedhawk]

I should have added that I relapsed during my first treatment with interferon/ribavirin. I'm sure it was because I already had decompensated cirrhosis at the time.

[orphanedhawk]

Obviously, I'm not mike but his situation was complicated by being post-transplant.

[nygirl7]

Mike has me beat by a week - had I known I would have continued on for a few more ;) (wink).

I feel so bad for Bee I just dont have the words. I did not relapse but just wanted to say that these new all orals will do the trick, I just know it Bee!

[rivll]

My God, man, you must be made of steel.
Tremendous admiration for you.