Is waiting to treat a good/bad idea?

[positude]

New to forum, but watched since dx in April and am very impressed with the knowledge base some of you have so wanted your expert opinions about tx. My viral load is about 1.8mil, genotype 1a, and liver bx findings are grade 2, stage 0. I just started a new job, have a new grandbaby on the way, and a very sick mother-in-law. My question is this, is it a good idea or a bad idea to postpone tx? I don't know how sick I'll get, but am betting I won't be able to work so there goes the new job. And, is it alright to be around newborns and the elderly when on interferon? I just don't know really. I know everyone has their own circumstances to evaluate before making this very personal decision, but those of you who have already treated know things that I don't. I appreciate any information you can share with me. Thank you all so much for the time and energy you spend helping others and answering questions. You are great.

[thegypsy9164]

read the posts from june 30, 2009 from the comment, "Do I really want to live like this for the next year? (or something like that)"

[Bill1954]

Hi, and welcome to the discussion group. With stage 0 fibrosis, a good case could be made to delay/postpone treatment; especially in light of your genotype. Additionally, it sounds as though you have a full social and vocational plate; this needs to be taken into account as well.

As far as contact with elderly and newborns are concerned, there’s nothing I’m personally aware of that would prohibit care of or visitation with either group. I cared for my grandchildren often during several years of HCV treatment, and found it to be therapeutic. If you find yourself stressed by them, you might want to limit the amount of time spent with them.

My observations in here regarding people’s ability to work on treatment; I’d guess that around 70% of folks that undergo therapy for HCV continue to work; although some require an altered or reduced schedule. Flexibility to take time off for doctor’s appointments and procedures is essential; and there may be days that you just get too tired to go in. Talk with your employer or the HR department in advance, and see what your options are.

Viral Load has little to do with disease progression; it’s primarily used as a barometer to gauge treatment response once Tx commences.

If you haven’t already, take a peek at Janis and Friends:

http://janis7hepc.com/

You might begin by opening ‘newly diagnosed’ near the top of the page, or by clicking on ‘other HCV information’, located in the right-hand margin. This provides an excellent overview of HCV management, and is a good reference site for future use.

Take care, and be well—

Bill

[apache1]

I agree with Bill.
Stage 0 genotype1...You do not need to rush to treat... 'IF' you are a true stage 0. The new PI drugs are right around the corner and much more effective for a geno1 with possibly less tx duration.

Way to many BX errors (up to 30%)... IMO, a confirmation of your liver damage staging with a fibrosure or fibroscan test, blood work, and or another bx if yours is not current. Plus a good evaluation by a hepatologist. This would put my mind at ease for postponing TX till the better drugs are available.

jmo
apache

[positude]

Thank you for the response, I appreciate it very much. To tell you the truth, the treatment itself is what scares me. I am fortunate enough to have the best hepatologist, and even he says I can wait if I really want to. But also fortunate enough to be offered an opportunity to enter a trial study. I know 1a is the most difficult to cure, but my chances of cure increase (although still not to 100%) with the availability of the new drugs in the trial. There is just a lot to think about, and the sfx I have read about from tx seem to be horrendous, though I know many have made it through just fine. Again, I am grateful for the bravery and wisdom of those on this site who have helped me make some sense of all this, you just never know who is watching (and learning) from you. Thanks.  

[positude]

Thank you for the post, I did read that one and it was very insightful.

[positude]

Thank you for the post. Would you mind if I ask what "PI" drugs are? Also, to address the issue of bx errors, I guess one can never be sure about anything in this life, but they did take what seemed like a quart of blood a couple weeks prior to bx and all tests looked really good. Everything was within normal limits except for a very slightly elevated HCO3, and a very slight decrease in MPV. The thing is, with the option of the trial study available to me, I feel like I should go ahead and treat, after all I'm not getting any younger, and this virus isn't going to just go away on its own. On the other hand, I do have lots going on in my life right now which would probably be put on hold for months, or even years if I treat now. So, you see why I'm seeking opinions from this forum, I trust them. Thanks again.

[positude]

Oh, protease inhibitors. Got it. :)

[hopeful51]

Hi,
It sounds like you have time to wait for the new drugs.
That is what I have decided to do too.
I know my post ( Do I really want to spend the next year like this) sounded bad, I was just having other things going on and it just is not the right time for me to continue TX.
Like I said my first TX was very doable.
That said I will not be trying any other medications nor so I advocate for them I simply don't know that much about it. There have been many discussions on this forum about this subject.
Looks like we'll be TX together soon as new drugs are here.I hope they make alot the demand will be high. Ha Ha
Till then makin' the most of ever day.
Take Care
Hopeful51

[hopeful51]

OOOPPSS.
That said I will not be trying any other medications NOR DO I advocate for them....
Where is spell check !!!!!!
I need a proof reader !!!!
Hopeful51

[Isobella]

My daughter is also geno 1. She is stage 1 grade 0, and she wanted to start tx this summer between semesters. (sophmore in college)

Her hepatologist suggested waiting because by the time she finished her 48 weeks, the new drugs would be on the market (possibly).  

Made perfect sense to me.  

I just finished 48 weeks....and I while I had light sx, I would have much preferred to have only done 24 weeks with a PI.  (geno 1a, stage 1 grade 0, vl 919,000, 47 y/o) I'm glad to have done it...but it was also perfect timing in my "life schedule".  

The biggest problem with the "watch and wait" approach, is that sometimes we forget to watch.  Sounds like you have a great hepa and will stay on top of things.  Not sure when your last biopsy was, but make sure you are comfortable/confident with the time frame and results.

If my two cents count.....I say see what happens in the next year with the new drugs, get established in your new job. (read:  make them love you so much so that when you need to be pampered....they will give you leeway, lol!!)  

Get healthy, live a liver loving life, enjoy the new baby....and plan to tx when the new drugs are out.

Good luck to ya....let us know what you decide.

[annieCinMD]

My two cents...wait for the new PIs. I'm on a trial for a second generation one. I did 16 weeks of standard treatment before I was able to do a cross over arm and add the 2 study drugs. I only got so so results off of Peg/Riba and it made me really sick by the time I added the other 2. I cleared within 2 weeks of adding the study drugs. After a month of all 4 I was so sick that the doctors pulled me off treatment for 2 weeks to bring my blood back to a semi normal state. With my doctor's blessing I agreed to do 4 more weeks of all 4 drugs, in order to boost my chances of knocking out the virus for good. Some people have great results of Peg/Riba, others, like myself don't. I did have a great result off the PI and only wish I had been put in an arm that had it up front. If you look around this forum, you'll see that quite a few of us have had pretty impressive results with the PIs. And 24 weeks is much more doable than 48 or longer.  Keep up with that doctor and watch this forum and the Janis site. Hep C Advocate has good stuff, too. Good luck.

[positude]

WOW. You are all so great, I just have to say thank you for the input! My hepatologist told me to think about it for a couple of months, so when I go back to him in mid August, I should be able to give him a definitive answer of some kind, and I will also be sure to let everyone here who is interested know what I decide. Until then, I will keep watching and learning. Thank you all so very much.