Wanting to Start Treatment, but unsure

[sunshine007]

Hi Everyone,

I am considering starting my treatment but am unsure if I can handle still working and taking care of my kids once my husband is away.  My husband will be gone for over a year starting in about a month, unless we can get a 1 or 2 month extension.  I have three boys (ages 3,5,11) and work full time from home.  I will be responsible for taking them to school and picking them up, and everything else.  Since my treatment duration should "only" last 6 months should I try and start as soon as possible while my husband can help me get through the early weeks of treatment, or wait at least 18 months until he's back home.  I'm a stage 2, grade 2 and have had HCV for over 20 years.  I've quit drinking and feel okay except for some aches and stomach issues.

[sunshine007]

Thank you guys for giving me your input.  Needless to say I'm throughly confused. One minute I want to start treatment, the next I'm worried about something else.  I'm really usually more focused than this and can think things out, but not doing so good this time.  Anyway, HepCinLA I really appreicate all your details of your treatment.  I hope I can get through it that easy when I start.  I will talk more to my husband and try and sort this out.  FLGuy I'm sorry your back to starting over, but I'm sure you'll get those little buggers this time.  I hope you have an easy road this time.  Be well!

[HepCinLA]

you can do this!  I did my shots Friday night.  For the first 3 weeks, I'd feel a tired on Saturday and Sunday and would need a 2 hour nap during the day but would feel better by Monday morning to take the kids to school. The only time I felt crappy during the first 6 weeks of treatment was when I wasn't drinking enough water.  I remember on week #5 going on a long car ride through the desert and didn't want to be bothered by bathroom stops  so I only drank 8 oz of water all day and by 9PM that night I was pooped.  So remember to drink lots of fluids.  In the beginning of treatment I drank like a gallon and a half of water, which was unnecessary.  I only needed about 1 quart-1/2 a day and I was fine.  It sounds like  a lot but really isn't b/c you're doing it throughout the day.  In the beginning I did make a "drinking schedule" for myself to make sure I was drinking enough water throughout the day but after a while it becomes second nature for you.
It takes about 4 weeks for your body to get used to the interferon and then after that it's the anemia that takes you down.  That was my real big worry b/c I'm basically a single parent when it comes to taking care of my kids.  Anyway, anemia never happened for me.  It only happens in 1/3 of treatment cases.  I started w/ a hemoglobin count of 15.3 and the lowest it went down was 12.6.  The only time fatigue during treatment was a problem was during that time of the month.  I still managed to make it through the day but was tired (just like I would be even if I weren't on treatment).  During that time of the month, I'd take an iron/herb supplement a coulple of times throughout the day.  Some people say stay away from iron if you have hep c b/c it can make the virus grow but that's only true if you're in the advanced stages of hep c.  I'd cleared the virus at week two and am now 4 weeks post treatment and am still clear.  
Just remember to give yourself plenty of time.  And as corny as it sounds, take it day by day.  There are some days that you won't feel like doing much and on other days you'll have tremendous energy.  You may not feel as mentally sharp on treatment but you'll find that you can still do the things you did before.  I think having kids helped b/c I wasn't given time to process whether I felt good or bad.  I had to get through the day for them.  B/c I didn't feel bad during the treatment I kept piling on activities for them to compensate for the day when I would start to feel terrible.  Well that never happened so the end result was that I was busier on treatment than I was before I started.  For peace of mind, get a few things together before you start txt.  Cook or buy frozen meals for the the first couple of weeks, ask a friend if they'd be willing to help you clean the house if you need it, stock pantry full of snacks for the kids to grab so they won't have to bother you, pay bills online, etc.
6 months will go by very quickly.  I think you'll feel happier knowing that you're virus-free.    Good luck!  If you need support, encouragement or advice, you can always come here!

[FlGuy]

Here's some reading:
http://www.hivandhepatitis.com/2005icr/aasld/docs/111805_c.html
I treated for 24 weeks (geno 3) was undectected at 12 weeks (was the first tx pcr) and at 24 weeks.  Relapsed discovered 5 months after tx end.
Will re-start again next month.  So, don't rely on the wisdom of my experience, I don't have any,

[FlGuy]

When they say 'test every two weeks' - you should get some clarification.  She could mean blood tests, like a CBC, every two weeks to see what impacts the meds are having to your blood.  To consider a shorter course of treatment you need to have a PCR (and a very sensitive one) to count the little buggers. So, make sure you're talking the same language.  Also, if you and doc will consider a short course you'll need to decide on 'how short' 14, 16 20 weeks??  If your doc has a lot of hcv experience he may be familiar with the concept.

[sunshine007]

I'm calling my nurse to see if reaching 12 weeks and stopping is advisable in her eyes.  I would love to be able to do 24, but just in case I can't I would like to know if she thinks 12 would be a problem.  I know it really depends on what my test at 2 & 4 weeks says.  They want to test me every 2 weeks for the first two months.  My work load is light right now and that's another reason for possibly getting a jump on it now.  Which genotype are you?  Are you UND now?  How long has it been since your treatment?  Thanks for your help!!!

[FlGuy]

To answer your real question.  The first few weeks were tough because they were abrupt and required lifestyle change and prioritizing my available energy. I had constant headaches, tired, achy but it only lasted 24 weeks.  Pace is very important as is diet, some amount of exercise and getting rest when you can.  I also did 800 mg of riba but did not get to anemia.  I did not miss a day of work while on tx, but was not the sharpest axe in the tool shed either. Our 2 kids are older than yours but my wife turned out to be the mother of three, not two.

[FlGuy]

Doable but suck is the most accurate way to put it.  From what I've read here the onset of anemia takes about 4-6 weeks to whack you.  As a geno 2 you will most likely be on 800 mg of ribavirin - which packs the anemia punch.  With that lower dose of riba (most people take 1000 - 1200) you have less chance to become anemic.  But, you will feel the draining effect of lower hemoglobin, even if it does not reach the depths of anemia.  Brining on help is the best thing you can do for yourself but if you have limited resources you should spend them on what buys you the most relief.  If you are the kind of a person who can live in a less neat world, maybe the best help would be late afternoon and evennig - someone to help with meal and the hectic end-of-day insanity you probably already deal with.  Finding a doc who will be proactive with 'resuce drugs' will be important to you.  Doc's can rx anti-anemia drugs (shots of procrit/epo) to help battle the draining effects, sleep aids to help you sleep through the night, and maybe chemicals to help with some of the possible psychological benefits of treatment.  There is an optin that you have.  Start the treatment, go for 4 weeks, see how you feel, (most importantly) get a viral load test after  3 or 4 weeks and then decide if you want to go on.  This way you can test-drive tx and see if you respond to the treatment.  One thing though, you can't go for four weeks then stop for a week and then start again.  You would have a point where it's **** or get off the pot.

[sunshine007]

Thanks. What I'm hearing is it's doable, but it will suck.  The good and bad thing is we just moved to this area and the kids don't have a huge social network yet.  The problem I don't either.  I will really be on my own, unless I can afford to hire help which is unlikely. Did the treatment get significantly easier after the first few weeks?  When does anemia usually hit? If I stop treatment after 12 weeks will I risk the virus returning and being more resilient? Gosh, this sucks.  I'm scared about waiting and damaging my liver more.  I've quit drinking, but I'm still worried what damage little buggers are causing on their own.  Thanks for your support!

[FlGuy]

Treatment (tx) as a single parent of kids that age will be tough. In the evenings, when you have the most activity around the house, will probably be the time when you feel the most drained, cranky and tired. If the kids are also involved in sports or are actively social (play dates) schlepping thm around will be an additional chore. While on tx the degree of difficulty for everything will likely be higher and your patience will be at the lowest.  For me the first several weeks were the hardest, mostly acclimating to the meds and finding my pace, which was geared back quite a bit. You may have the oppurtunity to cut back the tx time, based on early results, but for planning purposes plan on the full 24.  Keep in mind that if you start soon you'll have the holidays to deal with which are even more stressful, moreso if Mr. Sunshine is away.  You have a difficult decision to make but there is some good news - geno 2 is the easiest to cure.  Good luck in your decision

[HepCinLA]

I would start right away while you still have your husband around to help.  You may be surprised and not need any help during treatment but it's nice to know that someone can step in and help if you need to go lie down.  
By the way, I did the full 48 weeks of treatment w/ two very young hyper and energetic boys (ages 4 & 2).  I was responsible for taking care of them, getting them to school, cooking, cleaning, food shopping, paying bills, volunteering at their school and all that.  Unfortunately, my husband was busy with work so he wasn't much help at all.
Who knows, you might be one of the lucky ones who don't experience any side effects.

[sunshine007]

Hi, could you please tell me how you felt in the begining of treatment and in the middle and towards the end.  Did it get worse or better?  Did you have a lot of sx?  Which medicine where you on?  Was anemia a problem for you?  I really would like to get started (even this Friday) but am so confused.  I do work from home and the kids go to school (even the little one's in preschool) so I do have some flexibility there, but they still are a handful.  My husband is guaranteed to be here at least a month but no guarantees after that.  Please let me know what you think.  Thanks so much!

[bobbyullc]

duing tx while alone and taking care of kids may be a real challenge. i would consider waiting till things are better. good luck.
bobby

[cuteus]

I forgot to mention that you will not have much energy when anemia hits if you don't get treated for it with Procrit.  I probrably could not have worked full time without it.  There is a member here who finished tx a little while ago while taking care of toddlers. Some can do it if the dr helps with drug aids.

[sunshine007]

I just checked - the medicine is Peg-Intron.  Grandma - thanks for reminding me what's really important.  I hope you treatment is going well!

[sunshine007]

Thanks everyone.  I'm leaning towards waiting.  I am genotype 2a (sorry, I meant to post that).  Just a couple of questions - does the treatment get easier after the first couple of months? and is there a usual point in treatment when anemia usually starts?  Also, how did you guys feel before starting treatment?  Is this any correlation between how you felt prior to starting and with how you feel during treatment?  What I'm thinking is I feel pretty good as I'm not fatigued really, so I'm hoping I could possible get through the first months with support and just drag myself to the finish line.  Probably not a great plan, but I still felt I needed to look into it.  Also, do you think my liver will suffer much more damage by waiting a year plus?  Thanks for all your input and concern.  I really appreciate it!!

[GrandmaA]

I would wait if I were you. That 3 year old still needs you a lot. And at stage 2 you can wait for better meds coming down the pike. Or you could wait until your hubby comes back. Don't start something you can't finish and don't neglect those beautiful children.

[Sweetie6852]

Hi Sunshine - basically God bless you with 3 little ones - I had that 25 to 30 years ago, it was a challenge as a healthy mom at that time but I'm 3 weeks into this and I can barely take care of me.  This is each individual's choice but you will need a support network in place.  Everyone has different sx and at a different degree of intensity but you always have that choice to stop as well.  But make sure you have a support system for the days that are iffy.  Wishing you all the best with whatever decision you make.  Kyle

[tulsatime]

I know you want to rid yourself of the virus. But with three kids and work too. I know I couldn't do it. I did only 24 weeks last time and I couldn't work let alone take care of kids. I barely could fix myself something to eat. My husband was on his own. I could barely go to the grocery store. I was wiped out all the time. I wish you all the best in making the right decision for you. Good luck, Debi
PS everyone is different, some people might be able to do it.

[cuteus]

what medications would you be on?  some feel that pegasys offers less sides than the other interferons.  Many have finished tx while carrying a work load, and some have not been able to. You won't know until you start.  You might have minimal symptoms, or you might get hit hard. Startin while hubby is around sounds like a good trial, if it is too hard and you feel you can't finish while he is gone, you can shoot for a shorter course of tx.  You will need to be clear of the virus by wk 4 in order to have a shot at SVR with shorter tx. I guess you are geno 2 or 3?  that is why you only will do 6 months?  in that case, if you are clear by wk 4, you can do 12-16 wks of tx total and have a good shot at SVR.

[Myown]

I would wait if I were you. Three small children and tx would be difficult. Depression and other sx you might face (hope not) your children will not understand and it will upset them.

Plus, who knows what effect tension and high stress has on svr. Doing this without help, in your particular situation, would be stressful.

I'd wait for your husband to come back.

Wish you the best!