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Post Info TOPIC: Hello everyone
dustbear


Senior Member

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RE: Hello everyone
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Hi Kathy. Sorry to hear about your sx. This was my first forum too. You are not alone anymore!

I just finished 45 weeks and had many side effects but made it through. You will too!

Keep a diary and drink lots of water.

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Geno 1A, since 1981. SOT 1/2013   TX stopped 11/2013 in week 45/48 due to Myositis & Interstitial Lung Disease. Completed 94% of Peg-Inter dbl TX, UND since week 4.  SVR 4/2014!  Still SVR after 4+ yrs!

"Day by day, step by step, breath by breath"
Bloomster


Senior Member

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Hi Kathy, welcome to the forum. Sorry to hear you're having a tough time. My husband did 48 weeks triple therapy (victrelis) and is almost 6 months post. It is hard going, but you will get through it. In our hardest moments it was so helpful to vent and just discuss the things that were happening here at the forum. I hope you manage to feel a little better and most of all look forward to the success at the end. Caroline

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My husband had genotype 1a, 46yo, started triple therapy (peg/rib/vic) 23rd July 2012, VL prior to treatment 14 million, UNDET 12, 24 weeks, EOT 24th June 2013, EOT +1.5 weeks UNDET, EOT +12 weeks & EOT +27 weeks UNDET; SVR January 2014
Irish Lass


Newbie

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Hi Kathy,

I'm also new here, (never joined a forum before), but this really is a great site & a great bunch of people, with so much info to share, encouragement to give, so welcome from a fellow newbie biggrin.

I'm HCV free (since  Feb 2004) contracted it in Feb 1991 from infected gamma globulin, I'm rhesus negative (O neg) & had a m/c. It wasn't discovered until 1995 in London (as Hep non-A, non-B, in those days).  Moved back to Ireland in 1997 & had Pegasys Interferon & Copegaus Ribavirin treatment from Jan 2004- Feb 2005 under Prof. Hegarty at St. Vincent's in Dublin (http://www.stvincents.ie/), PCR / VL was HCV free after 1 month of TX, but did the full year as I was one of the first patients in Europe to try the pegInterferon, protocol now (in Ireland anyway)  is 6 months.  Plus they took a lot of extra blood for research (it's a teaching hospital) & apparently I'm in some European medical journals as I responded so well to the treatment (as 'Patient A').

I was  genotype 2 had several biopsies (pre & post Tx).  Prior to TX, I had no cirrhosis, minimal scarring & in my early 30's when I started treatment,  (I just turned 44 end of November) last PCR /VL check was May 2007 (right before I moved to New England) & it was negative & it'll be 10 years next Feb. However, I'm having some major bone issues that have developed over the years & have now accelerated  quite quickly.  I broke my pelvis on 01 November by just turning....so they're checking bone density and possible auto-immune issues (RA / Lupus etc.) which may or may not be a result from TX even after so long (I've read on other forums people having similar bone issues years after Tx).  But to echo what everyone has said, this is a good, safe, place to vent, ask questions, whatever.  I wish I would've had access to something like this when I was doing Tx in Ireland, but didn't have a PC at home (*very* rural) only at work (I worked in Shannon, co. Clare) & I didn't really have many opportunities there. 

I'm sorry you're having a rough time of it, wishing you wellness & just know that you're not alone.  Jenny



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Terry


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Hi Kathy   

  I am glad you found this place and as I mentioned before you will find some very nice and informative people on this site. We may not all be doing the same treatment but we all have had times when we needed just some one to talk to that understood what it takes to get through these treatments. We are here for you if you need us so keep in tough.    Terry



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Geno Type 1a stage 4 cirrhosis EOT 52 weeks SVR !!
Biggyb


Guru

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Hi Kathy, welcome to our forum. I was also on the Vict. for 48 weeks. I was on Neupogen also..1 shot a week. It worked very well for me. I am almost 6 months post now and still recovering. Main trouble is the SOB (shortness of breath) Stairs are awful ..Take good care and keep us posted. ~Bob~



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58 yo..Relapsed in 99 and again in 2004. Started triple therapy with Victrelis July 22,2012.  genotype 1a. week 8,12,16,24 VL Undetectable..E.O.T -- 6-22-2013,,,EOT + 24., UND. 

SVR !!!

 

~Bob~
DeRanger


Veteran Member

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Kathy,

Welcome.  You'll get answers, you'll get questions, support, an ear and most of all, people who know what you are going through.  I've been here just a short while - and feel among friends.

Thanks for enriching this group.

Bill



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1a, 35+ years; liver cancer survivor 7-2012 surgery; triple therapy 12-2012 (Interferon, riba, victrelis) - end 48-week treatment Nov. 29, 2013 - post tx 24 weeks undetected - SVR.
Matt Chris


Guru

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Hey Kathy 

Nice to see you have posted your first thread. We warmly welcome you and we are more than willing to help you during your journey, just post your concerns and questions.

matt 



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"And in the end, the love you take is equal to the love you make"

61 year old Geno type A1, F4 Cirrhotic, started 24 weeks on Harvoni 12-17-14 ,EOT-5 week = UND, 8-31-15 =UND , SVR-24 Baby YES! 
ucbgal


Senior Member

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Posts: 297
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kathy,

welcome to this understanding forum. we're all here for the same reason and offer  honest nonjudgemental advice.

i'm 55 as well ,started 6/19/13 and will finish 0n 12/11 w/all pills and darts. i  have suffered from low hemo since 2nd month for i have that mediterranean anemia. the inhaler was one of my lifesavers and excersising to keep blood flowing. depression is quite common  on therapy. i started on meds but after 2nd month chose therapy instead.

you've done such an amazing job thus far. how proud your loved ones must be for your courage & stamina. slow & steady wins the race, even if you have to use a cane to combat the vertigo.

sandy,ucbgal



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Tig


Admin

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Hello Kathy and welcome to the best forum available! You've found a wonderful, caring group of friends that are here for you 24/7. Please stay in touch and let us know a little more about your HCV history and test results. It really helps when answering your questions. Many of us post our particulars in the signature section of our profile. That's the text you see at the bottom of our posts. Kind of a mini history/biography.

I'm just finishing a 28 week course of Peg/Riba/Victrelis and I've been taking Neupogen twice a week for a while now and trust me it really helps build up your white count. While your white count is low, be sure to avoid people with colds or the flu. You're succeptible to catching any bug, so keep that in mind. I haven't had any problems in that respect and am glad it was available when needed. Keeping track of all those different medications can be a handful. I left lots of notes and set alarms to remind me on those days I needed help remembering! 

I hope you stay in touch here and wish you the absolute best moving forward!!



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Tig

68yo GT1A - 5 Mil - A2/F3 - (1996) Intron A - Non Responder, (2013) Peg/Riba/Vic SOT:05/23/13 EOT:12/04/13 SVR 9+ years!

Hep C FAQ   Lab Ref. Ranges  HCV Resistance

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JIme


Guru

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Hey Kathy, welcome to the greatest asset for helping us to get through tx in the world!

This is a wonderful place and you will meet many people who have been through what you are going through now. These people on this forum really care about each other and you will feel it too.

It's not easy sometimes but it  is doable if you just put one foot in front of the other. We are a tough lot and you are one of us now.

Keep moving forward and ask tons of questions. Hope you have a good day today.



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jim

GT1a, St2 Lv2 last biopsy 2002, VL  11.4m,  start triple tx 9/30/11

VL 470 @4wks.....VL 22,000 @8wks  stopped tx

Round 2-  Started 3/16/12   PSI-7977, BMS-790052, Riba Undetectable day 14

Did 24 weeks Still UND 12 weeks post tx, SVR24!!!!!!! 2/14/13

 

 

 

 

 
Cinnamon Girl


Guru

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Hi Kathy, I`m glad you took your sister`s advice and joined this forum!  

You`ll find all the support you need here and have lots of other people to chat with who understand exactly what it`s like to be struggling through a long stretch of Hep C treatment.  Many us here, myself included, had never joined a forum like this before, but if you stay around you`ll realise what a great community we have here.

I only did 24 weeks of Peg/Riba (for genotype 3) but also was in quite bad health to begin with, and the tiredness, weakness and depression hit me hard.  These are all common side effects, unfortunately, plus you also have the Neupogen shots to cope with, so it`s understandable that you`re finding it hard going.  I agree with Malcolm that it would be a good idea to discuss taking antidepressants for a while, many people find they make quite a difference. 

Your breathing difficulties are almost certainly related to being anemic but getting an inhaler could well make things a bit easier. 

Looking forward to hearing from you again, keep in touch, and best of luck!  smile

 

PS - I noticed you`d started 2 separate threads so I`ve joined them together so that all the replies are in the same place.  ~ Jill



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Jill 

(71 yo, lives in UK)

Was Gen 3a, 

24wks Peg Ifn/Riba, Sep 2010 - Mch 2011

UND @ Wk.4, UND @ EOT, 

SVR Nov 2011 --> Still UND @ EOT + 4 yrs.

 

 
TeddyTrout


Senior Member

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Hi Kathy, glad you decided to drop in and hope you hang your hat for a while. There are getting to be more and more of us 48 week triple treats and we totally know and understand what your going through. Some of us do better than others but I think it's got to do a lot with attitude an the inner strength to hang in and hope we have happier days ahead. We will be here to help as we can and don't be afraid or inhibited to ask any question or cry with us if you need to. We all have been there at some time during the treatment(s). Cheers.



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Don't sweat the small stuff, it will only give you hair loss.
mallani


Guru

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Hi Kathy,

Welcome to the Forum. Like you, I had never done  'a Forum thing' before, but this Forum helped me get through my 48 weeks of the Victrelis triple, and I went on to SVR.

I'm sorry you're having problems with your WCC.  Many Members have used Neupogen and that's just an added pain to what is a very demanding treatment. You're probably anaemic as well, which would account for the breathlessness. Depression is common with such a demanding Rx and maybe you should discuss this with your doctor, as antidepressants may help. You must be at treatment week 24 or thereabouts, so can you let us know your Viral Load results, and why you're doing 48 weeks?  Several Members have done the Victrelis triple, so please ask if your have any specific questions. It's not easy, but the results are worth it . Best of luck. Cheers.



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Geno 1b, IL28B CT,  x3 prior relapser,  ex-cirrhotic, 75 yo, did 48 weeks with Victrelis/Peg./Riba.  VL 1.28m at start, UNDET. at 8 ,12 ,16 ,24 ,30  and 48 weeks.  EOT 15 Feb 2013 , UNDET. at EOT + 28 weeks. SVR!  Still Undet. at EOT +5 years

Malcolm
JoAnneh


Guru

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Date:
RE: Hello everyone. I am new here.
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Hey Kathy,
Welcome to the forum!
I, too was a 48 weeker with triple
Therapy (Invicek). I had to eat lots
Of fat and gained 15 lbs.
I am 54 years old and list lots of hair.
This forum was a lifesaver and there are
Wonderful people here.
Sounds like you are having a very hard time.
I was fortunate I didn't have to take shots
For my anemia.
What week are you on?
I WAS genotype 1a but I achieved SVR!
The medicine worked, I am free of Hep C!
I know it's not easy and 48 weeks goes on and on
But it's doable. I beat this disease and so has many others
With triple therapy.
So glad you found us. Hang in there!
Just lifted you up in a prayer.
Xxoo

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JoAnne

Genotype 1a, Triple therapy w/Invicek started May 19, 2012

DET 4 wk. UND 2,6,12,24 48 treatment. Achieved SVR 2013!
smccune


Veteran Member

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Posts: 68
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Hello Kathy and welcome!!!!  Your sister has given you great advice.  These sites are amazing in that you get so much information and encouragement.  I have learned so many things here that the doctor didn't tell me.  And when you get down and depressed you can vent to people that understand and have been there.  I am 54 and started treatment in september (Inter/Rib).  Geno 3a.  I feel for all you "triple therapies" out there.  Don't know how you do it. Double therapy is bad enough.  Hang in there, you will get through all this and we will all help you. biggrin



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55 yo female.  Diagnosed 9/2011 Geno 3A.  Treatment delayed because of 9 Month antibiotic tx because of TB Positive test. Began tx 9/20/2013 Interf/Riba 24 wks.  Week 4, 8 undet. 1 year.......UNDETECTED!
KathyB


Newbie

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Date:
Hello everyone
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My name is Kathy.  I am 55 years old and have genotype1.  It is difficult to understand, I just do what they tell me to.  I started triple therapy (Ribovarin, Victrellis, and the Pegasus shots).  My health hasn't been so good to begin with.  my white blood count went down to .300. So now I also have to take Neupogen shots (1 ml) twice a week. It is making me so sick.  Haven't been able to keep any food down now, and breathing is so difficult that I have to sleep sitting up in a chair.  I do blood work every week.  I am on the 48 week program.  I think they are going to prescribe an inhaler on Monday.  My hair is falling out.  I have been just sick, weak, and tired.  I started this treatment in the later part of June this year.  It's the Neupogen I think that I have such a problem with.  The highest my white blood cells was 1800.  but it is difficult to stabilize.  

I never did a forum thing before.  My sister recommended that I do this Because I am getting depressed.  



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