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163322 tn?1458676408

Geno1 Possibly ReTreat?

Good morning everyone and aloha from Hawaii!  I'm ba-a-a-ack!

I went for my annual physical yesterday and my doctor said I was very healthy (maybe she was even jealous?).  But when I got home, I received a call from the GI/Hepa department----believe me, it was very strange hearing from the nurse after 4 years... I thought it was because I am overdue for a sigmoidoscopy so I said (jokingly) "So, what, Jo, you want to stick something up my butt???" (ummmmm, nooooooo...)  They want me to have a talk with one of the Drs about re-treating, with the new drug...

For those who are new, and those that forgot, I joined the Forum in Sept. '06, when I was diagnosed with HCV.  I began TX (inter/riba) in Jan. '07.  Was undetectable at 4 wks, and went on to finish the rest of the 24, during which time my WBCs dropped dangerously low so I was on regular doses of Neupogen as well.  My 6-month post-tx labs showed the virus alive and well, which was a HUGE disappointment, because I felt so good, and was sure TX worked.

Re-TXing wasn't an option, as my WBCs are still below normal, although everything else is normal, including AST/ALT.  But now, they want me to consider the new drug (the third one, added to Int/riba).  I need input!  I am going to call the Dr today to set up an appointment.  All along, I've figured that since I don't drink anymore, my dietary habits are excellent (except for a few digressions now and then), and my liver enzymes are fine, I'll remain status quo and go about my business and not think about the fact that I am living with HCV.

I'd love hearing from other Geno1s who are in the same boat!
Best Answer
223152 tn?1346978371
Hey, maui, I sure remember you.  I relapsed right around the time you were starting out. Let me tell you my story.  I had good response but not great first time around - I had 40 IU/mL at week 12 and treated for 56 weeks but still relapsed.  I was a grade 1 stage 1-2 before I treated and a bx done in 2007 said I was still a grade 1, stage 1-2.  I thought about treating again but the farther away I got from that first treatment, the more I thought, arrogantly, that my body had some symbiotic relationship with the C virus that kept it in check.  I wondered if anything I could do would make much of a difference or if my own immune system would keep me at a 1-2.  I did follow the PI development and was excited when FDA approval was given.

Like you, I got a call from the facility where I consulted after my relapse, in June, just a month after the PIs were approved.  Although my doctor had left, they had set me up  an appointment with another hepatologist and I decided to go.  First course of business was a new bx and, if I were a 1-2 it was my choice, and if I were a 3+ the doctor would recommend treatment.

To my absolute shock, the bx was grade 3, stage 3-4 - cirrhosis.  Beginning, but none the less, cirrhosis.  So I am on week 11 with SOC and Victrelis.  So far, so good, und at week 6 (2 weeks on VIC).

I think you have two excellent things in your favor if you choose to treat with the PIs. First, you were UND at week 4 first time.  Therefore, there is an excellent chance that you will do either 24 weeks with SOC and Incevik, or 28 weeks with SOC and Victrelis.  And since you made it that long under SOC, you might be able to make it through the entire tx.

They are saying maybe 5 years for treatment without interferon.  I suggest you get a bx and then make a decision.  This liver disease is not a linear progression, I am here to tell you.  If you have 5 years to way, fine; if not, join us.

btw, my WBC was rarley over 2 for my entire first treatment and my ANC with neupogen was between 1 - .4.

20 Responses
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163322 tn?1458676408
I am now scheduled to have a biopsy on Dec. 7th.  Had a good visit with the gastro; basically, Kaiser on Maui isn't ready to do the Triple TX yet, probably sometime in the spring.  Will keep you posted; I'm keeping my fingers crossed that there's no change in fibrosis.  Can always hope, right?  :o)
Helpful - 0
163322 tn?1458676408
Frijole!!!!   So good to hear from you!  OH had said you were doing the tx again, and so I tried finding you on the forum but my computer slowed down and then......  oh well, but here you are!

"the farther away I got from that first treatment, the more I thought, arrogantly, that my body had some symbiotic relationship with the C virus that kept it in check"

Boy, does that ever sum me up.  After reading about your bx results, I now want to have a bx asap.  Scary.

Victrelis is a new word for me---I should look it up but am too lazy.  

You have given me hope and confidence-----I can do this!  I'd like to respond to everyone's comments, but I've been on the phone and computer for two hours this morning and I need to go feed the chickens, and do my morning chores!  Thanks so much for all your support!

Hugs, M.

Helpful - 0
223152 tn?1346978371
halbev.

That is some great history. Thanks.  What a remarkable story.

Yes, these PI's are something.  
Helpful - 0
1789051 tn?1318376889
I also am genotype 1a stage 3 cirrhosis did 2 treatments of Int/peg breakthrough at 6 mo. Having had 6 mo off and Incevik was approved, I've now finished 12 weeks Incevik UND at 4 weeks /8 weeks/12 weeks/and go for 16 week labs Tuesday,
I would say there is a very good chance for you to go UND, it is not easy Incevik can be hard on you, but I feel the reward is worth it, And you were UND before I could never quite achieve that, they could not measure it quantitative test but could find it in with the qualitative test.
GO FOR IT!!!
Helpful - 0
1846163 tn?1331048748
I wasn't sure I wanted to treat as I really felt great.  My doc asked me if I wanted to wait until I was sick and then try to get through treatment.  He has a point.  Best time to try to beat this is when you ARE feeling good.  
Helpful - 0
163305 tn?1333668571
Let us know how your doctor's consult goes.
OH
Helpful - 0
Avatar universal
Bugger aye?

Investigate getting onto the 7977 stage 3 trials as well, they seem open to relapsers etc.
Helpful - 0
1669790 tn?1333662595
Although the WBC's are part of the equation, what you want to watch is the absolute neutrophil count (ANC).  The ANC is not measured directly, but derived by multiplying the WBC count times the percent of neutrophils in the differential WBC count.  Neutrophils are key components in the system of defense against infection.

My GI has referred me to a hemotologist after my ANC went below 300 (0.3) cell/uL to closely watch since interferon caused mine to crash.  I receive 480 mcg neupogen 2x per week to keep my levels up.  I do the interferon shot on Friday eve, then see a big drop in the ANC by Monday.  After the Monday neup shot, see a rise by Thursday, but usually not above 800.  The neupogen usually brings the ANC very quickly, but only for a 3-4 days for me.  

Discuss rescue drugs, hemotologists, frequency of cbc's with your doctor.  And you can swear, you just have to be creative.  :o)  
Helpful - 0
163322 tn?1458676408
Ooooh, can't say that word, can we???  
Helpful - 0
163322 tn?1458676408
The lowest my WBCs got during TX was 1.1.  Then they put me on a super high dose od Neupogen, which elevated them to 34.  Yes, thirty four.  Two weeks later they were back down to 1.7.

Now they're staying in the vicinity of 3.8.  But I will discuss all this with the new doctor.  The old one left, thank god.  He turned out to be an arrogant *****.
Helpful - 0
163322 tn?1458676408
Ack!!!  My head is spinning and now I'm getting paranoid!!!  I am going to have a visit w/ the dr on the 16th and will know more then.  As I said, I will have a biopsy before I make any decisions.  

OH:  Low WBCs right now mean 3.8 I think.  I just can't get them up to 4.

I have been taking silymarin regularly 2X daily for 5 years, and eating things that are liver-friendly, and not eating things that aren't.  The dr's last words to me 4 years ago were: "You have a 5% chance of your hepC to turn into full-blown HepC" or something to that effect.

Yup, low WBCs could be the result of the virus.  So could my bouts of occasional fatigue, but are they due to my age and the fact that I like to physically work my butt of??  Who knows...

In the meantime, it seems like I'm being welcomed back into the fold with open arms.  Thanks, guys!!
Helpful - 0
163305 tn?1333668571
Ola mi amiga, or howzit sistah!

How low is low?
My wbc are always low because of the immune suppression meds I take for my transplant.
Before starting tx this time, my wbc was 2.5.
Last lab,earlier this week,my wbc were 1.0, and my anc was 300, which meant I had to take a shot of neupogen.
If my neutrophils go lower than 750, I take neupogen.
We go week by week. Last week, they were up, hence no shot.

I'd ask your doctor about their current protocol concerning low wbc before beginning tx.

OH
Helpful - 0
1669790 tn?1333662595
Very interesting that you got a call from the GI/Hepa department to consider re-treatment.  I bet your head is spinning.   As Will and copyman stated, if you're St 3+ damage, you might feel well now, but for how long.  

I'm also curious about whether the neupogen didn't work, if an interferon dose reduction was considered prior to pulling you at 24 weeks.  Did you have other issues compounding the trt?

I also struggle with a low ANC since week 8 and have been kept in the game with neupogen 2x per week with no dose reductions.  I know neupogen doesn't work for everyone however.  

Welcome back to the forum and hope you have a great discussion with your doctor.  Best of luck to you.

Some reading if interested:
http://www.idse.net//ViewArticle.aspx?ses=ogst&d=Hepatitis&d_id=213&i=ISSUE%3a+August+2011&i_id=753&a_id=18862

http://www.fda.gov/ForConsumers/ByAudience/ForPatientAdvocates/ucm256328.htm
Helpful - 0
Avatar universal
Sorry but you are foolish if you are relying on normal ALT/AST test results whether you should treat or not. This disease has a way of sneaking up on you and biting you in the @ss.  Many times when this happens it is to late and there is not an option to treat.

Don't sweep this under the rug!

You should look into treating with the new drugs.
Helpful - 0
Avatar universal
To be blunt...if you have St 3 or now possibly St 4 damage . you have significant  liver damage .regardless of lack of symptoms.
Hopefully you can re-treat and they can keep a handle on the WBC. Many good hepa"s will let the  ANC (neutrophils) get quite low before pulling you off tx.
How low did they get last time and did neup have no effect.

Tthese  are  very efficient meds  they are using today and hopfully you can take advantage of that.
Best to you ......
Will
Helpful - 0
163322 tn?1458676408
I was pulled at 24 wks due to the problems I was having with my extremely low WBCs.  Any further TX might have done me in.  Consequently, I am more than a little leery of re-TXing.  Since my health now is and has been fine, I sort of feel like "if it's not broken, don't fix it".  The deciding factor would be the results of a biopsy, which I haven't had since the initial one in '06, where I was between 2-3.

Will, thanks for the links!
Helpful - 0
Avatar universal
The new Protease Inhibitors(Victrelis  & Incivek)  had very good results for relapsers in trials (approx. 66 - 88%) depending on different factors and seem to be showing the same efficacy now in clinical practice.
They each have somewhat different  side effects and protocols for dosing,as shown in the link below..
Good luck on this go at it..there are many here  on both regimes.

Will

http://www.accessdata.fda.gov/drugsatfda_docs/label/2011/201917lbl.pdf


http://www.merck.com/product/usa/pi_circulars/v/victrelis/victrelis_pi.pdf

Helpful - 0
179856 tn?1333547362
Hey I dont remember but why did you only do 24 weeks of treatment, being  UND at week 4 gave you a great shot if you did all 48? I beet you kick this thing right in the butt this time!
Helpful - 0
179856 tn?1333547362
Wow a blast from the past!!!!!!!!!! How are you doing it's great to see you again!
Helpful - 0
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