Ready to quit Tx

[khoffman]

I have geno type 1a.  59k viral load and stage 1 grade 1 liver biopsy when i started tx on May 28, 2010.  I was UND by 8wks, maybe earlier but the Dr forget to put in the lab work for it at 4wks :(

I was having very little sx at first then slowing had to stop running, then started feeling extremely tired.  I have been having other small sx (dry skin, mouth, and scalp etc). For about a month now i have been having diarrhea about 3 times a wk but only once when would have it.  

I had some diarrhea friday before my shot and then 2 times after my shot.  And Saturday I felt horrible ALL day I was having stomach aches, diarrhea, then headaches, and being extremely tired.  I could not really eat much but when i did i stuck to the BRAT diet.  Today Sunday, my stomach is not hurting as much and i am not as tired but have still had diarrhea 3 times.

Also TH and F i was extremely tired.  The problem is that i am a stay at home to two young boys, so i have to be able to function during the day.

I took my 30th shot Friday night and I am now ready to quit.  I can not live my life like this, i am been stuck at home in bed all weekend.  I it is really hard and sad with two kids wanting you to play.  My older one has been saying for months mom why do you take those pills if they make you so tired.  

I am REALLY worried at Christmas morning, If I am going to start feeling this BAD after every shot.  I want to be able to enjoy christmas with my kids.  

[R Glass]

Thank you for updating us. You made a wise decision.
For some of us tx was/is the loneliest and darkest time we have experienced. Just coming here and being among “you own kind” will help you tremendously.  If you just want to talk, vent, or whatever, visit the Hepc Social Forum.

I’m not advising you what to do, but if it was me, I wouldn’t do the shot until after Christmas morning. You may want to call your Dr. Mine told me if something came up and I wanted to put off my shot a day, it would be fine as long as I didn’t make a habit of it.
Merry Christmas, R. Glass

[Kathy73]

Merry Christmas to you and your family! I'm so pleased you are feeling better. There were times when I was on tx and I just didn't think I could do it any more. A little encouragement goes a long way!

[khoffman]

Thank you all so much! I was really ready to guit, this weekend.  But all of your comments have helped me know that i can finish this and I do want to be DONE with this FOREVER!!  And you gave some great ideas to help me we through this and to help my sons (and me) see in the end is near :)  

I also wanted to let you know that i have been feeling so much better this week.  Thank you for all your support.  Merry Christmas!

[R Glass]

We are a support Group better yet Family. You haven’t posted much through your tx. We are here for you. Let us help you get through this.

[Boobert]

Your so so close, like the others PLEASE don't quit now!!

[babs824]

i sooo agree with the other heppers and helpers. PLEEZE; dont quit before u have exhausted all resources. first u should talk to your doc and get help for sx.(get blood work too in case) then at home find ways to lessen the stress and amount of energy output. maybe u can snuggle and watch a film with kids as a way to relax and enjoy there company. have hubby get u a big calendar and show kids as they cross of days with u each day. make it fun! insist that u get a nap each day and go to bed at reasonable time.  i keep meals very simple and bought paper plates cups and silver so i can just trash. (i know not green). i keep laundry down by wearing same sweats to sleep and hang out in. who cares how u look? ask a pal or sibling to help out by taking kids for a brief visit.
please dont waste 30 wks tx til u have done everything possible. best luck. dont forget one day at a time thinking will really help. best, babs

[nygirl7]

"I have HEPC type 1b, so treatment is not recommended for me.  "

Agree with Trish I had 1a and 1b and treated for 72 weeks and am SVR for three years.

Treatment is difficult but I cannot see wasting the 30 weeks when you are so close to the end. We all struggle through it (i am a single mother who had to work every day and take care of the kids - no great husband here but somehow I did make it through).  If you do it one day at a time you will find it will go by and you will be finished shortly. Then you will be hopefully SVR and never have to worry about it again.

Do it for you kids they need you!

[Susan_1a_CC]

We are all pulling for you.  Please, insist on the help that you need from your doctor, or the nurse - don't let them brush you off - call, call, and call again if necessary.  You have to be your own patient advocate right now and I am concerned that with the holidays approaching you may have to really be vigilant to be heard.  Hopefully, I am wrong.  Best of luck.

[can-do-man]

Your in the rough area for tx, but i have a feeling things will level out in a few weeks again, i also had bad diarrhea  and the doctor was able to take care of it. Just try to hang in there you can do it............ As for the boys, well theres always rope and duct tape, JUST KIDDING.

Wishing you the very best to you and your family.

cando

[Trish77]

"My husband has been 100% supportive and helpful"

"My husband works but helps out 100% when he is home."

Tough out the last 18 weeks.  You have a goldmine there.

Good luck.

[Magnum]

When I felt like staying in bed all day, as you felt, it was my 4th attempt. At that time I was taking an overdose of Infergen. I called my doctor and he said to stop immediately. The next day I was told to get blood work. My AST & ALT went through the roof as well as my Bilirubin. I was jaundiced...

In my case, it was the infergen overdose that was actually killing me before killing the virus. The reason I mention this, is that you should contact your doctor and get blood work right now. Opinions may vary on this subject, but I'm passing on a cautionary tale of what I went through. You don't want to damage your liver any further by the possibility that you can't tolerate the meds at the dosage you're taking. Call your doctor to be sure and best of luck...

Magnum

[khoffman]

Thank you all SO MUCH.  That is just what I needed. I needed someone to tell me not to quit.  My husband has been 100% supportive and helpful, but when i say i am having a bad sx or i want to quit he says ok lets quit. I am going to call the dr in the morning to see if there is something i can take to STOP this diarrhea, b/c i can not keep anything in me right now.  

This is to answer some of your questions:

I am scheduled to tx for 48 wks.

I am 30yrs old woman.  My boys are 3.5yrs & 1yr.  We put the older boy in full day pre-K when I decided to start tx.  So I am able to take naps and rest during the day.  

I was diagnosed in March, when went to the dr for constipation, she did blood work and saw my liver enzymes were high and then got it retested for Hep. I was stage 1 grade 1 when i had a liver biopsy in April.

My husband works but helps out 100% when he is home.  My parents work so can not help me during the day.  

I am going to have to talk to the dr about the B-12 shot.

[meakea]

Please do not quit!  I understand your exhaustion but you have had a really good response to treatment since you were UND by week 8 and it would be a potential waste of 30 weeks of treatment if you quit now.  I understand the situation with your kids and Christmas and all but please try to call on whomever you can to help you get through this.  Talk to your doc now...tell him/her how badly you are feeling so that he can help treatment your symptoms to get you through this.  Feeling crappy through one Christmas is truly a small price to pay for a chance to get rid of Hep C and you are, so far, having what sounds like a very good response to your treatment.  Please do what you can and hang in there!!  One day at a time.  First thing tomorrow morning, call your doctor and ask them for help for your symptoms.  Please keep communicating with us here and we will do everything we can to keep you going forward.  Don't give up.

[pj1881]

I get the ***** too... My sides are just the way yours are, I swear......  I have a three year old daughter that likes to climb on me like a jungle gym, and i cannot always keep up with her on the weekends either.....The important thing is I will be around for the long haul if I can beat this thing.. Before starting treatment I waited a couple years, and the whole time I did nothing but worry that I was doomed... DONT GIVE UP!

[RobertBeWell]

Surely you're not going to waste 30 weeks of treatment.

Sides can and do come and go. In another week you may be feeling much better.

Stay tough.

[Trish77]

Should also say...it's at LEAST 68 % .. and could be even better if you knew what your 4 week result was.  18 weeks more and good chance you will never have to do this again.  Good luck with this and hope very much you can get some kind of help and relief.

[fretboard]

That's a real shame!!!  Young kids are very difficult to be around b/c they really don't understand tx and everything that goes with it at all.  You have to do what's right so think about it very carefully especially after completing 30 shots.  Right now you gotta fix that diarrhea!!  Even though you can't give the kids the attention you have to they will understand as time goes forward.  You have done 30 shots!!  That's a massive amount of hard work and dedication!  You may be thinking that after this much tx and time being UND that you will SVR with what you've already gone thru but what if you're wrong?  I suggest you drink more water and find something that helps with the diarrhea.  Call that doctor and tell him you're ready to quit and you want something that's gonna help you for awhile.  Please, find the strength to go onward.  Hell, after 30 shots you will really have quitters remorse to say the least!!   good luck!!

[Trish77]

I just wanted to say how I recognize how tough this must be for you.  As the others have said, stopping now likely won't improve Christmas much at all.  You've received good advice up above.  I will tell you that with your UND at 8 weeks, your chance of cure jumped from 45% to around 68%.  If that's any motivation at all, you have only 18 weeks to go and 30 weeks under your belt.  You can probably take something for the diarrhea if you check with your pharmacist or your doctor.  Maybe you can tell your boys you won't have to take the pills for too much longer.  Get a calendar and mark off the weeks with them for how many more until Mommy can stop and perhaps talk to them about what special thing you'll do together to celebrate Mommy being done all her pills.  I'm just tossing things out there ...so that they know this isn't forever.

Very hard and I hope there are people in your life who can help you get through the last 18 weeks and make this a little easier for you.

Trish

[Trinity4]

JingleBells, agree with Trish that stating 1b in not recommend is an incorrect statement.
Perhaps not for you because of some other reason you have not disclosed but 1b is like 1a, six of one and a half dozen of the other with both genotypes being very treatable.  The cure rate for geno 1 (45-48%) is less than geno 2 & 3 (75-80%) and as a trained hepc presenter I hope you are not advising your audience according to that statement.

Trinity

[pcds]

No one knows how difficult this is for you but you.  It must be pretty awful if you're considering stopping after so much time invested.  These drugs also make us more emotional so I hope you give it a lot of thought before you decide.  Please speak with your doctor before you stop. Maybe there is something to help with the bowel issues.  Also diarrhea dehydrates you, and can cause increased feelings of weakness.  Christmas is one day.  Getting rid of HCV is for the rest of your life.   Whatever you do, you will be OK.  You can always treat another time if you decide to stop.
Judy

[Trish77]

"I have HEPC type 1b, so treatment is not recommended for me.  "

Sorry to post this on khoffman's thread but this is where your comment is.  What are you talking about, it's not recommended for you?  I had both 1a and 1b and went through treatment and now I am SVR. I had Hep C for around 25+ years when I started treatment.  Lots of 1b folks go through treatment.I don't understand what you're talking about here.  

[Trinity4]

I hope you don't quit.  Everyone feels bad, we just keep pushing.  It would be shame to have gone this far, quit and have to do it again at another time.  

Please reconsider, with a little perseverance this may be your opportunity for a hepc free life.  Just think, this chapter in your life will be closed.  You'll be able to watch the children grow, graduate, marry and never have to worry about the health of your liver or any hepatic manifestations.  Hepc will no longer consume your life, it won't even be a nagging thought in the back of your mind.   I would consider that a blessing.

Best to you,
Trinity  

[James10500]

I know it's tough.  And as someone who has only done 19 weeks so far as compared to your 30 realize you have more tx experience than me.  You have 30 weeks invested in this, please don't stop now.  We all know what the consequences are if this disease wins the battle.  Remember the sx can vary from week to week at least for me.  Five weeks ago I thought the worst was over then it all got bad again for me. Then I felt a little better.  Try to get through the next 18 minutes don't worry about the next 18 weeks........I know easy for me to say.

Wishing you the best,

James

[vik97]

Sorry to hear you're feeling badly.  I don't think it would be wise to stop treatment around Christmas because you're more emotional and not thinking clearly.  Try to think of the long term goal of being rid of the virus once and for all.  If you could make it at least into January  you would be able to make a more reasoned decision.  The fact that you were UND at 8 weeks (or maybe 4 weeks) means that your chances of clearing the virus are excellent.