I am scheduled to start tx

[wonderingwhen]

I have viewd many posts here but never really joined in. I have had Hep C for 37 years. I did interferon alfa-2b about 8 years ago, no success. I now have a hepatalogists and he wants to start tx. I am between stage 2 and 3, low platelets, low w.b. cells, genotype 1 and viral count of 3 mil. Dr wants me to see a hemotoligist to see if there is any other reason for the low w.b.cell count first. Dr told me 48 weeks of treatment and he has had 50% success rate with my stage. To be honest the 8 weeks I was on tx is a blur! Will I be able to work or travel? As of now I am not suffering any symptons other than a little fatique towards the end of the day. What can I look foward to? My wife tells me I was very cranky when on tx before. All experiences will be appreciated!

[layla]

Just got back form a long weekend. A much needed rest! They measure PCR at 12 weeks but I think in your case hopefully they will do a monthly PCR. If you had taken riba before you would need to do a higher dose but since you did monotherapy I imagine you will be started on standard tx, hopefully pegasys. Have them do a PCR at 4 weeks and see how your viral load is doing. Ribavirin is an important part of tx now and hopefully this will work for you. I was so bummed I did not clear at 12 weeks but it did work out for me and others too so hang in there. You have to be agressive and even more so if you have already done tx BUT it can be done. If you ever want to talk feel free to email me. ***@**** . LL

[wonderingwhen]

No, just interferon alone and not the pegalated that is used now. Just so happens I spoke to my previous dr today and asked him what criteria he used after 8 weeks to take me off tx. Dr told me he thought it was ensigm levels. I don't think that is what is used now. By the way what do they measure at the twelve week stage?

[layla]

When you did the tx previously was ribavirin included? Just wondering because that has made a lot of difference in SVR rates. Most of us keep on tx longer because for some reason or another we have something that lowers our chances of SVR, like perhaps not clearing at 12 weeks, having more liver damage, being overweight with fatty liver or anything like that. It seems it's working for many of us. There are quit a few of us now who have SVR after extending. I was not clear at 12 weeks so I chose to do 18 months. I am SVR and get my 12 month PCR in June. I did have a 10 month that was clear so I feel pretty good about my prospects. Your doc sounds agressive and to me thats good. Many of us had to go through a few docs to get one to work with us on sx's and keep us on full dose tx. I hope you doc finds out the low WBC for you. I have seen if often on tx but not without tx. If anyone here knows about that I bet they will pipe in. As for the next tx, I personally have not seen anything that seems it will work better than what's current within the near future, say 5 years at least but other may have different opinions they will offer you. Hope to see you around. LL

[layla]

I think everyone is a bit cranky on tx, some more than others. Tx is very stressfull and it does affect your moods. Just being prepared and knowing will help you and your family understand whats going on more. I did 18 month at full dose tx and worked a stressfull and often at times very physical job. There were rough days but I got through it. I actually preferred being busy because just being home feeling sickly really made time go by slowly. I'm an advocate for extending tx if there are any circumstances that could lower your SVR like liver damage. I take from your post the reason you did only 8 weeks was because of low wbc. Did they give you any meds to help you with that because you will surely need then if you do tx again. You doc is good to try to find out if there are other reason for this before starting you on tx. Maybe it is something that can be treated before tx. Glad to see you join in. LL

[honey1616]

Hi Wondering,,,,Starting tx causes much anxiety because you really don't know how it will effect you. The majority of people seem to operate just fine and work daily.  Most days,,,you would love to call in sick but will find,,,,once you get going,,,,you feel better and will be glad you swung that leg out of the bed. A year is a long time to be on tx so on some days you just have to go with it and carry a positive attitude and that will make tx days easier.  Yes,,it does make you cranky and depressed,,,some days more so then others.  You will know that feeling immediately and maybe on those days just tell your wife,,,its one of those days and she will understand and give you space. Come here often and vent to us and smile at home.  LOL I know easier said then done,,,But you can do it. Good Luck and let us know your start date!

[cuteus]

a post started by artgal on 5/16 "suggestions..." addresses the work related issue. many members gave their input then and you might benefit from reading some of them, since not all members check in on a daily basis.
make sure your dr is willing to go longer than 48 wks should you still have virus present at wk 12 of treatment.

[susan400]

As they said above, everybody's different.  I've treated lots of times.  The first 3 times, I was able to work.  However, for the past 3-1/2 years, I've been unable to work.  I'm on Soc. Sec. Dis.  Not everyone has this difficulty, some have more.  It just depends.  A lot of people clear on the 1st or 2nd treatment.  I will pray for you to clear.

Susan

[wrecksm]

Yes I did back in 1993 when they discovered the Hep C.  They did a liver scan, function, and biopsy at that time and told me I had scaring in the liver.  I have had liver functions done at least annually since.  I have been a user of Milk Thistle pretty much since then and my count stayed about the same with the exception of slight elivations.  But now the numbers are increasing at a faster pace.
Thanks for the definitions on tx etc. and your reply.
wrecksm

[cuteus]

you were diagnosed(dx) with cirrhosis and no one suggested treatment?
the bottom line is, you need to treat if you have no medical conditions that prevent you from doing it. what genotype are you?
the new medications and tx approaches are increasing the odds for cure on the chronically infected, get to a hepatologist to discuss tx before you reach end stage disease (ESLD).

[wonderingwhen]

I was taken off tx after 8 weeks because my dr saw no drop in viral count. This time my dr (different) says 12 weeks will be the test to see if I respond. Now if he says I don't respond then what? I hear some of you keep on tx, what are the circumstances? My wbc has dropped in the last couple of years,I want to say it is at about 2.8, which I am told is low without tx. This and my low platelets (80) are my dr main concern. He says he has tx to treat both symptoms, just wants to make sure the low wbc is not due to some imune problem. He says that he has found the more aggresive the tx the better the results have been. He also mentioned there was another type tx in the horizon. Anybody heard about that? I will ask him what it might be next visit. I want to thank all for your replys!

[wrecksm]

I am a first time visitor, could someone explain what tx is.  I am a Hep C victim.  I have an escalating liver count, and I am just starting to research my condition and possible choices.  I was discovered to have Hep C and cirrhosis back in 1993 from a blood transfusion performed following a car accident back in 1968.  I have lived a seemingly normal life all this time until lately.  I am completely exhausted most of the time.
I would appreciate any information you have to share.  Thank you, wrecks

[sunspot]

wrecksm.
Tx= treatment
Bx= biopsy
Sx= side effects

I would not be too sure you have full blown cirrhosis from 1993. You may have some fibroses. Only a biopsy will tell for sure. Did you have one?

Dana

[pitch]

Everybody on this site seems to have different experiences which makes complete sense. I will be having my 47th of 48 this Thursday and everything has gone way better than I expected. I was non-detectable at 6 weeks so that was good. I have worked every day of the tx(I'm a stockbroker so it's a desk job but it can be stressfull), my wife and I have been on a number of trips(I find driving something enjoyable while on the tx), and have made huge efforts to still live life and not dwell on the sx. Make no mistake they are there but let's face it, this for now is our way to beat this thing. I may have been lucky but it hasn't been so bad. I will
say that these last few weeks are really going slow!!!!! Anyway good luck!