Thinking About Spring Tx and Worried About Daughter

I've been reading and absorbing everything and am getting closer to treatment in the spring - it will then have been a year since we found out we had this and hopefully I will have let go more of trying to control what my daughter does...or doesnt do. She had her bx and doc told her to call, of course she hasnt. I know some of you have far more experience than me with kids that have this too like chellski - you are my hero! Also by then son will have had one too. I do have concerns about sx but compared to some of the ailments I have now - I dont know. I read a lot here about sx and problems while on tx, but surely there are problems just with the hep c? Dental problems, fatigue, sensitivity to the sun, insomnia, and generally feeling like **** - are these hep c related? I worry about taking care of my disabled son while on tx, and of course work is always a concern. Any comments appreciated - I honestly want to post more but feel like I dont have much to say

[amommy]

Hi there!  I do not have a whole lot of answers for you, but I wanted to say hi.  I remember that your post is actually the one that got me posting since you were in Boston like me and dealing with your children being diagnosed.  I am thankful to you for your first post!  
The only advice I can offer is that for me, the anticipation and anxiety before starting treatment was MUCH worse than the actual first shot.  Hang in there.  I am in the Boston area, and I'd come help you out in a heartbeat if you need it.  I am working only 2 nights a week and the rest of the time I am home caring for my 2 year old daughter.  I think you will do fine.  You are a strong woman.  
I feel the same as you about the posting.  I always seem to only post when I "need" something from the people in the know!  I hate that feeling, but have been assured that it's ok!  So, post away when you feel like it!
Have to run, the kiddo wants a snack, but I will keep you in my thoughts and prayers.  About your daughter, I am sure she is scared.  I hope you can encourage her to call.  Hope you can talk to her about it a little bit.

[cuteus]

Hi there! I did not know you were considering tx so soon, big step! Here is an article on some of the things they are connecting to hep c:
http://www.medadvocates.org/diseases/hcv/extrahepatic.html
some believe they exist and some don't. You can form an opinion better,  if you had symptoms,that are not usually associated with our age group, before finding out you had hep c, and they dissappear after SVR.

I can't comment on the worries about your daughter, but you know Sybil can.  She has done many of the things you have, worried the same exact worries.  Don't forget to ask her.
It has to be hard trying to control your despair at her lack of interest in her condition, or seemingly lack of interest. SHe has not even asked about her bx results?

[jmjm530]

Hi there, glad your checking in, been thinking about you.

You'll get lots of different opinions on what symptons are assocated  with hep c and what aren't. Some have a whole menu of symptons and some suggest most of those ailments have nothing to do wih Hep C.

Fortunatly, you have a great doctor and medical staff behind you. Pick their brains and see what they think.

-- Jim

[beamishboy]

my sympathys for your situation-tuff row to hoe!.....Regarding hep-c symptoms,yes ,i think the virus intensifys pre-existing joint pain,causes fatique , irritability & depression...messes w/ our immune system,sleep patterns & bowels........post trx i expect to feel some relief from these ailments...during trx (week-9) i am experiencing relief from chronic joint pain,very encouraging for me!!!.......hope all goes well,my thots r with you..Get yur daughter to visit here? GOOD LUCK

[NYgirl]

There are a lot of people who for some reason want to live in denial of HepC.  I don't understand why except maybe they figure it's easy to ignore since their skin on their face isn't rotting and dying off - instead it's inside sight unseen.  If that were the case why you bet your daughter would be RUNNING to a doctor right?!!!

Either way the best thing you can do is hang tough and do what YOU have to do for today as hard as that is.  Leading by example...is often better than 1,000 words can ever be.

Perhaps your daughter will see and receive STRENGTH from your actions.

As it's taken YOU almost a year to treat...maybe it will take her two years...God knows it's not an easy thing to make peace with but once it's done it's done.

I wish you all of the best for your treatment and the peace of mind to deal with her denial.  Hopefully she will come to terms QUICKLY.

Debby

[beamishboy]

Just wondering& yes,worrying,about state of your affairs...Hope all is improving,moving in the rite direction...Hang in there Man!!--please post a little something?

[NYgirl]

Have not seen Mauka at all.  Wondering what happened there as he was on a lot.

[beamishboy]

Why,thank you kind lady...speaking of movies,i watched an incredible documentary last nite--DARK DAYS-by marc singer--homeless squatters in an abandoned Amtrac tunnel in NYC--awesome characters,great sound track,and a created post-modern family feel...i truly,whole-heartedly recommend--Like this Forum it embraces the Best of human nature--tolerance&kindness......

[NYgirl]

oH MY GOD please I am so glad I did NOT watch it!!!

Every time I got downtown to the city on the train I look in the tunnels and think of the people who live in there. I mean OBSESSIVELY for some reason.  I always leave thinking you know how bad your life SEEMS...some have it MUCH much worse!

It's funny that you mention it in here because just last week it was making me mental.

Now I have something to try and find to see to add to my obsessiveness about the whole thing! :(

[beamishboy]

you will be quite surprised by the humanity& humor these poor people display...Kinda humbling,but also inspirational...And it ends soo Well..gotta like a happy ending,esp during treatment...I wouldn't recommend if i didn't think there was  bigtime positive !!! i am totally into comedys--no tragedy need apply.......This is the Home of the Happy hepper( thats with a small h on purpose, not a permanent part of my equation--hep-c is an unwelcome & rude squatter that will soon be vacating the premises).........hope you r feeling well today(((nygirl)))

[NYgirl]

I'm right with you my friend in the club and it IS a little "h".  Can't give that sucker the credit it's looking for!

I'm doing fine ... hating having to be at work in such beautiful weather - 67 days until spring and it's still 50 in the NE?  LOL.

But then...I generally hate being at work anyway!  Oh to be in the rapidly disappearing middle class! ;-)

What color wig are you going to wear with the red dress?  I must plan my matching ensemble so that we do not clash!  (((BMW))) :)

[beamishboy]

wig!!!!! what wig,we ain't doin wigstock,are we?,can't getdown& shake booty if i'm worried 'bout wig askance...i kinda figured i would either cornrow the 4 remaining strands& henna the whole head--always wanted to be a firey redhead!..or maybe extensions? can they be attached to my ears?--nygirl,there is no way we will clash or blend--way sympatico--we merely enhance.....

[amirtracy]

Sorry to change the subject- didn't want to take up a whole thingy.
Got results today. Stage2- Grade 1     Geno is 1b and viral load is 10 mill. that sounded high to me but i'm not complaining. dr. said i could treat or wait but am starting in 2 weeks. get eye exam tomorrow ..wanted to thank everyone here. the last few months have been kinda wierd and this place and some of you people helped me. i feel so much better just knowing where i stand. please take care of  yourselves and thank you most graciously.    tracy

[cuteus]

that pretty much looked like my bx too! but I WAS a 1a, you will soon be posting WAS a 1b. I hope tx is one of the most doable in your case.  You can always quit and wait, is what I told myself.
Why start so soon? impatient like Nygirl?

[jmjm530]

All the best going forward with your treatment.

If you haven't already, you might want to go through a little check list in the next couple of weeks. The following is incomplete and I'm sure others will chime in...

> Contact your insurance company and make sure your coverage is adequate. Also find out if they cover Procrit (epo) and Neupogen. These are two common "rescue" drugs that many of us need.

>Discuss with your doctor how he plans to deal with riba-induced anemia and/or low ANC. What you want to hear is that he will intervene early with the rescue drugs and not take you off the treatment drugs.

> Ask your doctor what is the plan if you're not non-detectible by week 12. This is a complex area but some doctors stop treatment if you don't have a two-log drop while others extend treatment beyond the usual 48 weeks. Many here who have not cleared by week 12 have had success with extended treatment. One "rule" is to treat 36 weeks beyond your first non-detec PCR.

> Discuss when and how often you'll have blood tests.
Viral load is usually done first at week 12, but more of us have been asking for a week 4 PCR. This can give you and your doctor more information in terms of how you're responding. What you want is a *sensitive* PCR at week 4 and 12, that will measure down to at least 50 IU/ml or even lower. Heptimax is a popular test by Quest Labs and goes down to 5 IU/ml.

There's more but gotta sign off...most of us here have had the above discussions with our doctors but in my case -- and I'm sure many others -- these discussion occured *after* treatment began. If you can all this cleared before, your treatment will go that much smoother as well as your partnership with your medical team.

All the best moving forward.

-- Jim

[amirtracy]

thanks again you guys... jim, my dr. said i could have the 4 week pcf if i want it, i'm uninsured (was trying to get and had funny alt & ast's..finally started my own business and for the first time didn't have coverage OF COURSE)..anyway the dr. said i could have the 4 week if i can afford it, if not then 12 week pcr. doing blood work every week for 4 weeks then 1 a month as needed. no coverage on the procrit or neupogen so i'm keeping my fingers crossed i won't need it. if i do i'll find a way. dr. said he would be aggressive w/ treatment. he has a nurse practitioner that only deals w/ hepc patients and she was awesome. i'll deal just with her and the dr. if needed. she's setting up the meds for me w/ schering plough...what else? ...
Cuteus, i wanted to treat now because i'm basically asymptomatic, i'm 40 & female & the meds are being provided to me. i can't wait while this beast gets worse hoping a new drug will be available while i'm still healthy. and i don't know if i'll be able to get the medicine in the future. i know i can't get insurance until this is undetectable. too many questions. i'll definently keep you guys posted. you'll probably be walking me through it...thanks so much.  tracy

[can-do-man]

What i don't understand is why a 4 week pcr if your a geno 1. I mean its not going to change anything. Your still in it for the full 48 weeks. Even if your a RVR. To me it just seems to add undue stress to what is already a stressful time. When i talked to my doctor we agreeded at 12 weeks if i was clear then its 48 weeks and out for me as long as i stayed clear at week 24. If not clear at 12 weeks but tx was working then we would do one at 20 weeks. If clear then we would go for at lease 36 more weeks, maybe more. Depending on how i was handling the sx. Maybe im missing something here but if the info is not going to change things at 4 weeks then why have the added worry since most type 1 are not clear at 4 weeks. Thanks

[can-do-man]

You might want to look into this in advance in case you need procrit. Its a patient assistance program.

http://www.procritline.com/

[cougareyes]

They are starting to work with the idea of a short course tx for 1a's. 24 weeks total, they have already established some pre-tx parameters; yet you are right some people are testing for no purpose. And I agree that "too frequent testing" of any and all blood counts leads to alot of undue stresss.    Peace

[honey11]

Most drs pull a pcr at 12 week...that is usually standard,,,if clear then you carry on with tx for 36 weeks. However,,,I have noticed more and more drs WILL do a 4 week pcr if you request one and if you are clear at 4 weeks,,,that would be great!  I'm not sure if there is any geno 1s here that have shown undetectable at 4 weeks and if that is the case,,,,would just another 36 weeks added do the trick,,,making for a 40 week?  I'm not sure but maybe someone will post here.  If your insurance covers it,,,I for one would have liked to have a 4 week pcr but just never asked at the time..

Dance,,,welcome aboard! Everyone reacts to the tx differently and some more severly then others. My case,,,it was doable but annoying to feel not up to par everyday on awakening.  Most people continue to work and carry on schedules with family and children and it would be wonderful if we all could start tx,,and put everything aside for the duration but lol   Don't think that will work.  Only you can decide on what you could cut back or get help with and plan before you start.  Worse case scenario,,,you start and decide its overwhelming,,,,you could always stop....Good Luck to you in your decision!

[cuteus]

it sounds like a very reasonable schedule from your dr. You are very lucky. \

Some are playing with the short tx, for geno 1, mainly in Europe where cost is always in their policy making, but it is only about 1/4 that actually clear by the  4th wk, and even then some do relapse after stopping tx. It is appealing to some patients as well as some drs to go the shorter route, and some are willing to chance it.
I hope your sides are tolerable and you reach the SVR status

[Dale_Ray]

Hey Dance, I'm on my 9th injection tomorrow and if someone like me can do it anyone can. We all have a little different reactions to it but the folks in this forum keep me going. They have no idea how much I lean on them. Best of luck to you and everyone so do the treatments and stay in touch. Best wishes to you and your family - Dale

[amirtracy]

Can-d0-man thanks so much for that link!!! I've been worried about covering that expense if it comes to that. I've maxed out most of my creditcards and hit my savings hard just for the biopsy and all the tests so far so that might just save me! i was going to take out another mortgage if i had to. :(
Kalio1- I've pretty much decided to skip the 4 week pcr. what's the point is about right and as i've already mentioned this whole ordeal has been expensive.
Cutues-....just thanks.   tracy

[jmjm530]

Amir,

Economics certainly plays a big part in the decision and I'm sure you'll be fine following your doctor's protocol which appears logically laid out.

But expense aside, the 4-week PCR is becoming more and more popular with hepatologists who are inclined to customize treatment based on early or rapid response.

And to clarify, I think some are confusing the 4-week PCR with the newer short course treatment. While the short-course treatment uses the 4-week PCR as one determinant, the 4-week PCR has other valid uses. In my case, for example, I was non-detec by some standards at week 4 but my doctor still wanted me to treat for 52-weeks.

Here are two examples of where a 4-week PCR might come in handy.

Example 1: 4-week PCR shows less than a 1/2 log drop or even a rise in viral load. Doctor may want to re-evaluate drug doses and/or type of peg. What you get here is something like an early warning system that treatment isn't going all that well, instead of waiting for week 12.

Example 2: 4-week PCR shows non-detectible but the plan remains to treat for 48-weeks. At week 40 the patient develops serious sides and a decision has to be made whether or not to continue treatment. Having this little bit of extra information -- the 4-week PCR -- will lend some guidance to this decision.

-----------------

All said, if your doctor is not onboard with indivdualizing treatment -- if he/she is a straight 48 week kinda doctor regardless, then the extra info may not be put to any great use. However, how many of us have switched doctors either early or mid treatment. So that little bit of xtra info which may not be relevant to your current doc may be relevant to a new doc or a second consult.

In my case I treated with a very agressive hepatologist who decided to double-dose the Peg until I became non-detectible, based on my genotype 1b, age (59) and stage 3 fibrosis. He did weekly PCR's from week 1 until week 6 when I became non-detectible. Some may say this is excessive but it was part of a plan/strategy that his office often uses because they see results.

I'm not trying to sell the 4-week PCR or the short course treatment -- two different topics anyway -- but I do believe the more info you and your doctors have at hand, the better decisions you will be able to make.

-- Jim

[iceboy]

Hello all my friends, and thanks for your concern about me. I basically have been in bed, and have not been able to read, particularly on a computer screen. The letters just start having sex with each other. My blood levels are still messy, my HGB is still in 7, but I

[can-do-man]

Gee i thought i was the only one here that wasn't obsessed with blood tests, i don't like them, can't change the outcome of them and frankly not my favorite thing to do. See to many here worried about this being to high or this being to low and for the most part it doesn't really matter. Now i do keep a eye out if i need procrit but since i tend to move slow anyway sometimes thats hard to tell. Im stresed out enough, so i don't need to look for things to add to it. Be careful out there its a crazy world.

[jmjm530]

Ice said: "The letters just start having sex with each other..."
------------

What meds/dosage did you say you were on...gotta try some of that. LOL.
--------------------------------------------------

Really sorry you've got to endure all this and all the best at the hospital. Sounds like it's out of your hands now and in the hands of the doctors and the higher authorites. You'll be in my prayers tonight. All the best and let us know how things turn out when you're up and able.

-- Jim

[SnoWav]

yep me too when I upped my dose to 1400 riba doc said to get blood test every 2 weeks well it was more like 9 weeks. last time I looked my blood count was 9.2 that was 12 weeks ago. I don't care about the numbers after I cleared at 12 weeks. 48 weeks and 6 days from my last pills not staring into space as much and my imagination is returning. Cheers
jeff

[jmjm530]

Here's an example where the 4-week PCR and the short-course do work together.

Example 3: Patient has low viral load and level 0 or level 1 Fibrosis but still decides to treat, but doesn't want to treat  for 48 weeks. The plan then is to have a 4-week PCR. If non-detectible at week 4, then treat for another 20 weeks (short course) and be done. If detectible at week 4, quit treatment and go into watch and wait mode. A scenario like like this may not be for everyone but for those with low pre-tx viral loads who are on the edge of making a decision it offers one more choice. And that's really what this is all about -- information and choices.

-- Jim

[can-do-man]

Well i see where example 2 makes sense, if you were clear and at week 40 the sides was to much. Might give u some piece of mind. As for example 1, and this is just my take on it but it would seem at only 4 weeks it would be to early to do much changing. But for me the stress it brings outweigh the benifts.

But i like hearing both sides of it. Thanks to all for responding. Its been something i've thought about but never asked.

[can-do-man]

If i was a stage 0 or even a 1 being a geno 1. You couldn't pay me to put this **** in my system. .. LOL.. Not saying people shouldn't, just i wouldn't.

[jmjm530]

I do agree that more PCR's can mean more stress. You simply have to weigh the risks (more stress) and rewards (more info) against each other. My doctor for example wanted monthly PCR's after I became non-dect at week 6 but I chose to only do them every 2-3 months because of the stress factor waiting the two weeks for Heptimax to finish cooking up their results. LOL. However, I still get stressed out every time the lab faxes me my liver enzymes which are about every other week, so I guess there's no free lunch in the stress arena.

-- Jim

[jmjm530]

Can-do said: If i was a stage 0 or even a 1 being a geno 1. You couldn't pay me to put this **** in my system. .. LOL.. Not saying people shouldn't, just i wouldn't.
---------------------------------------------

Nor would I my friend. Nor would I. Hey...I was dx as a stage 3, and still waited another couple of years to treat. LOL.

But everyone looks at this differently, and some for their own personal reasons chose to treat at lower fibrotic levels. Example three I think offers an interesting compromise where the risks of tx drug exposure is cut down to either 4 or 24 weeks as opposed to 48.

-- Jim

[jmjm530]

I'd like to change example one to read: "4-week PCR shows less than an (x) log drop or even a rise in viral load" with "x" to be filled in by the treating physician. In the original example I used "1/2" log drop but some docs may use a higher or lower number.

-- Jim

[can-do-man]

Thanks, as for the short tx. Not for me, not enough data on it for me to risk it. I figure if you decide to treat give it your best shot the first time. As for the people going through this 2 and 3 times they must be strong people with alot of guts. I admire their courage i don't think i could do it.

[friole]

.....http://www.procritline.com/ on the right side of this site under patient assistance you can click on it for the form. They also have a number you can call for help... The number is 1-800-553-3851...

http://www.epogen.com/patient/reimbursement/reimbursement.jsp
For assistance, call the Reimbursement Connection

[antman]

thanks for list a "checklist" of questions for the Dr. My Nurse Prac. who briefed me answered most of them. She said you may have anemia, pain, etc. but, they will treat eveything and send me to a shrink even, if I need it. They acted like, no problem, we got you covered. It kind of made me feel "warm n fuzzy", sort of... then she gives me a big box from Roche filled with everything from a bio hazard deposit box to an eye pad to ease headaches, I guess and of course all the literature ,a video and Roche offers a 24 hr. Nurse line in which you sighn up for a nurse. I'm pretty much sold on treating this spring. My b' day is in March. I'll probably start after it. BTW- my stats: 49 y o M , Stage 1, Grade 2.waiting on geno. prob. 1 they said. who am I to argue.
antman

[dancegirl54]

Thanks for the comments and support. I havent made a firm decision yet - all depends on the kids still. I go back and forth with it. I'm due to have more blood work after my levels rose because of the herbs - we'll see if that's the case, and I will talk more with doc then.

[friole]

Glad to see you back.  Yes yes yes -- all those symptoms you mentioned can be the result of Hep C.  They also can be the side effects of treatment.  It is a worry and I know you have concerns about working and caring for your son.  Just remember - it is not a life sentence.  If the sx are too hard, you can bail.  At least give it a try - that is all any of us can do.  You may be one of those who actually feel better on tx.  You will never know until you try.
frijole