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In need of advice for my mom's treatment
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In need of advice for my mom's treatment

Hi, I was wondering does anyone have any advice that I can give my mother before starting her first shot tomorrow.
She is very nervous, and I don't blame her, but I'm getting mixed signals on the side affects of the shots and Riba? I know that the side affects can be awful, but from what I have read so far , they don't sound near as bad as she has been warned. Could she stop taking the treatment, if she absolutely could not bear the side affects? Will the medication make her lose her hair?  Should she take nerve medication prior to shots? Thank you for any tips or advice that you could spare. She has already put taking her first injection off by a week, ugh... this is very stressful. I wish each of you luck in your treatment.
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1658980_tn?1330715150
I am very sorry for your mother's diagnosis. Both of you are understandably nervous and concerened - is a very scary and overwhelming prospect to begin treatment for a serious disease whether you are the patient or if it is someone you love.  There are many people on the board that will be able to answer your questions much better than I can but I wanted to offer my support and words of encouragement to hang in there and make use of the support that you can get here.  
Good luck to your mom in her treatment.
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Avatar_f_tn
Hi Dixie.  First thing I want to say is you're a good daughter and it's good of you to support your Mom by reaching out to look for information to help her.

Second thing....I think that was hard on ALL of us, the thinking about it before starting treatment.  I gave myself my own injections and there is a mental thing that goes "sigh...here we go again, shot time" but you barely feel the needle and if you do it's just so short-term. Some people have a rough first weekend and feel like they have the flu and that ends up being their worst weekend after the shot and it gets better from there....and others, like me, got all ready for a rough weekend and....nothing.  I got a headache, took some tylenol and that was it.  

However....over the course of treatment there were other side effects to deal with and it's hard to predict what it will be like for your mom.  I would think that there is a small percentage of folks who get the really really rough side effects and the greater amount of us definitely got side effects and were able to manage our way through it.  Not easy but we definitely got through it.  So how things will go for your mom, nobody is able to say. Can't even say if she'll lose her hair, mine thinned out alot but nobody noticed but me...and others lost enough hair to wear wigs.  However there is lots of support here as she goes through it and has questions on how to manage one or the other side effect.  

The "side effects" from advanced liver disease are far worse.  Having said that....

Wonder if you could share a bit about your mom's condition and how far along her liver damage is and is she genotype 1, 2, or 3?  I hope she's under the care of a good experienced hepatologist who has solid experience treating people with HCV.  

If you have any other questions, by all means post them and people will help.  Good luck to you and your Mom.

Trish
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Avatar_f_tn
Hi,

You are definitely a very caring and concerned daughter and that is the first step to helping your mother cope with this treatment. I hope she decides to finally get that first shot. I am not going to say it is easy, but not everyone responds the same way to it.

I had my first treatment back in 2004, and I had almost every possible side effect. The very first shot caused flu-like symptoms and a fever of 104, the one day I felt better was the day I had to have the shot again.

I am now on treatment #2. Yes the Hep C came back, and yes it was a very harsh 48 weeks the first time around, but for the sake of my health I made the decision of going through this again. I have 3 children and 4 beautiful grandchildren and I want to be healthy for them, and for myself.

This time I am on the TMC 435 study. I felt great for the first two weeks, with no side effects at all,. On day 14 I started feeling very weak, it hit me all of a sudden, but I know I have to go on, no matter how sick I feel, and that is why I joined this forum, because the support is incredible. Knowing that you can communicate with others that are going through the same thing, and are there supporting you is what makes this treatment more tolerable. There is no need to go through this alone, we have each other, and though we are complete strangers we share the one thing we need the most help with.

Good luck to you Mom,

Carmen

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Avatar_f_tn
First, I would like to thank each of you for responding. I'm still trying to educate myself on the terminology and facts about Hep C and it's treatment, so please bare with me. :)  Trish,my mom is genotype 3. I really have NO idea what this means, and to be honest I don't think she does either as of right now. So, any info on that would be appreciated. She has a doctor, however ,she has crummy insurance so that worries me about her getting good care. Her doctor is a G.I. doctor, is there a difference? Due to my work schedule, I haven't been able to go to any appointments with her yet. I'm taking her to her next appointment and will be asking millions of questions. I'm not sure exactly how far along her liver damage is, but she mentioned something about 6%.  She has told me that her liver is functioning, and looks good to her doctor. She has told me that she has to have blood drawn each month to be monitored, does anyone know what that is for? I was also wondering , does your genotype determine how long (many weeks) you will need treatment? Carmen, what is the TMC 435 study? I'm sorry that the Hep C came back. I wish you all the best in your recovery, and hope that you have no more "bad side affect" days.  Thanks again to each of you, my prayers go out to you. Nancy  
p.s. are there any reliable website's that anyone could recommend? thanks    
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1118724_tn?1357014191
If you are going to have a genotype it might as well be 3. Not that it's a picnic or in anyway a milder form but treatment (tx) time is half of type 1 at 24 weeks. Most importantly the tx success rate is much higher at 75% plus vs. type 1's 40 to 50%. The blood draws do monitor various blood counts, too many to recount here. As a for instance, the med's MAY take down White Blood Cells (WBC) count well below normal causing possible problems with the immune system. They are looking for such reactions, blood testing is routine.
Ask for copies of all your labs. Post your questions here (the more detail the better), the forum will walk you through an explanation.
Coax your mom into beginning. Once started she can NOT delay the next shot by so much as a day, much less a week. This fear of side effects is normal but it can't be used to put off the inevitability of tx.

http://www.labtestsonline.org/understanding/conditions/hep.html

Gives a kind of brief overview of Hep C. Mostly it's value is in explaining the blood test she'll be having done. Sorry I don't really have more sites, hopefully someone will give up a couple more.

All the best to you and your mom. Please come back to the forum there is a lot of support and knowledge here. Maybe get your mom to visit also.
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Avatar_m_tn
what type of damage does she have?  What is her staging?  Does she have other extrahepatic issues?  Does she have any issues which could make complicate her TX or make it less successful?  Does she have a top flight doctor /hepatologist?  Any weight issues?  IR issues?  Non-drinker?  Cirrhosis?  History of depression?  These can all affect ones TX and viral response.

If you don't know these answers I'd suggest that you slow down and don't immediately treat. Get the answers.  What will insurance do for you?  Might they pick up the new drugs?

There are many factors which can reduce the effectiveness of TX.  Many of these can be improved before starting on TX.  

Plan your trip; don't just take off and navigate from the road.

best
Willy
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Avatar_f_tn
Thanks for the link and the great info. I greatly appreciate it. She started her Riba this morning and her first shot this evening around 8 o'clock. I just spoke with her on the phone and she said that she felt normal so far, however, she is on the edge of her seat awaiting the bad side effects to kick in. She understands that her shot's have to be taken on time, every time. She doesn't have access to a computer, so I'm doing what research that I can to help us both understand the whole process. I'm sure that I will have many questions and it's nice  to know that I can actually get answers. Thanks again. I wish you all the best.
nancy
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Avatar_f_tn
I understand that I have my homework cut out for me. I'm preparing myself as quickly as I can. I have the answers to some of those questions, but not all of them. I will definitely be finding the answers. My aunt was just diagnosed as well, she has Hep C and Hep B. I'm trying to gain as much knowledge as I can to help both of them in their treatment process.
Thanks,
Nancy  
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Avatar_f_tn
Hi Nancy,

Hep C has different "flavours" of virus called Genotypes.  Genotype 1 is the most common in North America and also hardest to treat - requires 48 weeks of treatment currently with just under a 50% cure rate.  Genotype 2 and 3 require 24 weeks of treatment although Genotype 3 is a little tougher than Genotype 2 and both have around a 75% - 80% chance of cure.  So your Mom has a preferred genotype.  

A GI has training in liver diseases and treatment but doesn't necessarily have broad knowledge and experience treating Hepatitis C.  That would be a hepatologist, an area that a GI can specialize in.  Hopefully your Mom's doc has good solid experience and is knowledgeable and current.  

I've never heard liver damage referred to in percentages, but instead in Stage and Grade, from 1 - 4.  Has your mom had a biopsy?  That should have the information on it.

Did they do a viral load test right before your Mom started treatment to get a baseline viral load?  When was her last PCR?   A PCR is the test that tells you what the viral load is.

Her next PCR should be no later than 4 weeks.  Did her GI schedule another PCR for her at the 4 week mark?

Her monthly blood tests would be CBC's - complete blood counts...and the different markers would indicate various things over time.  Now that she's on treatment, these CBC's will be used to also monitor how the treatment drugs are impacting her white and red blood cell counts.  Interferon generally reduces white counts to some degree and the ribavirin reduces red counts to some degree and it needs to be monitored over the duration of treatment to ensure they aren't dropping too low.  The white count to be watching is the ANC - Absolute Neutrophil Count and the red count is HGB - hemoglobin.  

I would suggest to your Mom that she ask for copies of these CBC results.  Then she can compare them for herself and she has the data if she wants to ask any questions or if you do.  Lots of times someone will ask a question on here about something and we'll ask for information that exists on the CBC results so that we can help better.

I would also suggest that your Mom write down her questions before she goes to the doctor.  Sometimes the visits are over so fast and after you get done you remember what you wish you'd asked and it's too late.  

As for your Aunt, how was she diagnosed with Hep C and Hep B?  I test positive for surface antibodies for Hep B, but that's because I had Hep B at one time and cleared it, as about 85% of people with Hep B do.  There are three markers for Hep B and your status depends on which ones are positive or negative.  The only reason I question is that lots of people are unclear about their actual status for Hep B or C and base it on a positive antibody or antigen result thinking they have chronic Hep but sometimes that isn't the case at all.

Is there a Hep C support group in your Mom's area that she could go to since she doesn't have a computer?  That might help her to talk with others going through the same thing.

Good luck with all this...we all started from zero and learned our way.  You will too.

Trish
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Avatar_f_tn
Hi and good stuff. A lot to read I must say. Well your mom hopefully will beat this bug. Your mom type 3 as compared to me type 1 will have a greater chance to succeed to kill HCV. My self with present treatment maybe 40% success. So I feel confident your mom will succeed. In the mean time during treament help her with her diet. and most important to help limit side affects drink lots of water. Half your body wait in onces. 150 lbs is 75 ozs or 10 8oz glasses. That helps dilute the poison in your system and helps flush the liver and less side effects. And some people sail right through. Keep copies of all your moms numbers from test results like viral load and other blood/liver tests. It is important to keep on hand for reference. And your aunt if the same type 3 should be similar treatment or if a differentyp like geno  type1a, she will be treated differently. Just ask the question non too stupid and someone will answer. My names Chris new here, New about my hepc about 6 months. It's a slow moving desease allowing us time to beat it. I wish her well
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Avatar_m_tn
Good evening, or good morning.  : )

Sorry, I missed the part in the first post about your Mom starting in a matter of hours.  : )

The best thing I can say is to read, ask questions and as you have issues and questions, to also use the search tool for this site.  The question and subject has likely been addressed numerous times and in many ways.

I would ask when the first PCR was scheduled?  I'd suggest getting copies of all of her medical records so that if necessary you can do research ask questions here.  

This is a great site and there are a lot of knowledgeable people, both of past and present whose experience will be helpful to you both and your auntie as well.

best wishes to you both....

Willy
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Avatar_f_tn
I have to say I was never one that could drink a lot of water.  I didn't drink half my body weight in water while on treatment, but I sure did increase the amount of water I drank and drank what I could.  Watched my urine for signs of dehydration - if it was light or dark, could see my nails getting ridges and certain other physical symptoms that told me I should drink more.  Just the same....the overall advice is drink LOTS of water as the ribavirin causes dehydration which can cause headaches and all sorts of extra side effects.  
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