how do you live through treatment

Please someone help me. About two months ago I was diagnosed with Hep C. I found that I had a signifigant viral load and started tx right away. I started interferon and ribovirin tx 6 weeks ago. I have no quality of life left. I have already been on neupogen ( for major drop in neutrophils) for two weeks, my hct is down to 30 and I feel like I am dying. I am in so much pain all of the time I cannot stand it. I have arthritis also. I have no energy, and never feel good. I felt fine othr than the arthritis before I started. At 4 weeks my viral load was undetectable, I just do not know if I can keep up the tx for 5 more months. I have 2 small children and they want their mom back. I cannot finish out a week of work and I am failing in college. I am afraid to tell anyone what is going onwith me so I am getting nasty looks from everyone, becouse I was the one who always did everyting, now I cannot even get out of bed. I am not depressed, but I want my life back. I am scared and alone and do not know how to deal with this anyone have any advice?

[meki]

Yeah - you pull up your bootstraps --- You give yourself a good talking to...

and you realize this:

YOU ARE ON CHEMOTHERAPY.

Period.

Just like a cancer patient - you are taking a medication that is hard on your body - it's going to have some rough effects on some folks.

BUT --- it is killing the disease inside you.

You should be reporting ALL side effects to your doctor.

They do have some drugs to help out with Pain, lack of sleep --- and Vitamin B12 shots can help with drowsies.

You can tell folks you're on chemo - and if they ask you any further information - you can say you aren't ready to talk about it yet - unless you are ready --- in which case you handle it straightforward and tell them.

It's hard... But we do understand...

Please - remember to talk to your doctor about any depression (get on a decent depression med if you are) and any abnormal side effects.

Your wbcs being so low that they put you on neupogen is why you're exhausted.

Get your kids to help out --- get your family to help you.

Make it a game for them --- see who can help the most... Gets a bigger allowance or more priveleges. Or something.

Hugs and welcome to the forum.

Meki

[Trinity4]

Welcome to the forum and you've come to the right place for good advise and lots of encouragement.  Firstly, did you have a liver biopsy and was there damage?  The reason I ask is a significant viral load or the fact that you have hepc is not necessarily the only reason someone should consider treatment.  There are better drugs coming out and sometimes it can be advantageous to wait if the liver is relatively healthy or if your tx doesn't work you have some time to consider other options.  But it's a mute point since you are currently treating and obviously want to eradicate the disease.  It's very hard to go through tx, no doubt about it and especially hard when you have small children.  Is there a possibility you can shorten your work hours or even try for FMLA?  It also looks like you probably had some nasty drops in your ANC (reason for Neupogen) which we all hope will not happen but often does and your HCT is low (mine is hovering around 32) but not too scary yet (normal is within 35.6 to 45) but that could be causing more fatigue than one normally experiences from tx.  I have no first hand knowledge with Neupogen, but I have heard many people say they experience muscle like pain and nausea while on it.
Keep in mind if you didn't have that rescue drug your doctor would probably pull you off of treatment so it's a good thing even though it may make you feel worse at the moment.
When we start tx we think ok, I can do this and I may have to make some adjustments but it's not a big deal. I'm ready for anything that comes my way.  My life is going to change a little but not significantly.  And then BAM!!  It knocks us for a loop.  That is the nature of this beast and it can humble the strongest of people.  That is when you start making adjustments on a daily basis to get through each day.  What was a big priority before can easily end up on the bottom of list.  Your children and your health are the two most important things in the world right now.  You don't have to tell anyone but if it helps people to better understand your situation then you should tell them.  You can't have that superwoman mentality anymore because obviously you aren't well enough.  To hell with what people think, I get nasty looks just because I'm who I am and people can just take a hike if they don't like it.  Try to focus on getting through each day the best you can and if that means you spend a lot of time in bed - DO IT!!   School can wait, your kids need you but they're kids and very resilient so if you make changes they will be fine.  You will get your life back after tx is over and there is a good possibility you will reach SVR and guarantee yourself a long and healthy life.  24 wks or if its 48 wks is not so much in the big scheme of things.   Also, procrit can help raise RBC if it becomes too low.  You might want to ask your doctor about that.  I wish you the very best and others will share their experiences and tips.  Good Luck and hope you feel better soon.
Trinity

[Trinity4]

Sorry, didn't mean to be a wordy gerdy.  Get a little carried away sometimes.  

[Marcia2202]

I didn't realize when I replied to your first post, that you were actually already on treatment. You also stated that you did not know how to tell people about the hep c. As Meki suggested, a lot of people who do not want anyone to know, they tell people that they are on chemotherapy. You do not have to tell them that it is chemo for hep c, unless you want to.

It seems that you have genotype 2 or 3, if you are doing 6 months treatment, so you have a good chance of beating this virus, especially since you were undetected at 4 weeks. That's a great thing!

You are not alone here, many people have gone or are currently going through treatment, and you will see that you are quite normal having all these side effects. Just think of that your kids are going to have their mom back much healthier than before, when you are finished treating.

As you mentioned that you got this through work, I assume you are somehow working in the medical profession and are being taken care of properly. But as the others said, there are rescue drugs. Check out the health pages on the upper hand right corner. There is one called HCV TX Rescue Drugs, just for your information.

Hugs,

Marcia

[Trish77]

If I read you right, you were diagnosed for Hep C 2 months ago and started treatment 6 weeks ago.  That doesn't sound like you had a whole lot of time to investigate your options, have a biopsy, etc.   When you say you started treating because you have a significant viral load, I wonder if you're aware that the viral load you have has nothing to do with the amount of liver damage you have and that you may have had options for when you could start treatment?  That if the biopsy showed little liver damage, you could perhaps have delayed until treatment fit into a more appropriate time in your life...such as after you were done your college course or had arranged extra caregivers to help with your children?

It also doesn't sound like your doctor prepared you all that well for what you were about to go through.  My doctor asked me "Are you ready to go through a year of potential hell?"  Actually...I think he simply said "a year of hell".  I certainly hope your doctor fully informed you that the treatment could impact your ability to work, go to school and care for your children as well as you might like.

I'm astonished really that two weeks after diagnosis, a woman who is in college, working full time and has two small children would start into treatment.  That doesn't seem to have given you any time to evaluate how this will change your life and to make a plan in the event you can't work or can't finish your courses....and most importantly, how you'll care for your children during this time. Again, makes me think you were not necessarily adequately informed.

To have the added pressure of keeping this a secret from everyone so that all the usual expectations you'd have when NOT on treatment are still on you .. well, you are under a helluvalot of pressure .. let alone going through everything treatment lays on you physically and mentally.

It's kind of like closing the barn gate after the horse has already gotten out to get a biopsy if you have not had one, to find out how much liver damage you have so that you know if you have options with regards to when you do treatment.  However, I would still pursue it so that it will help you make good decisions as you continue treatment based on your actual health situation and not your viral load only.

As for how you cope NOW .. well, you were already carrying a heavy load - mom to small kids, college student, full-time employee and "the one who does everything".  That's alot NOT on treatment...and now on top of all that, you are on chemo, as Meki said.  Something's gotta give.  You are going to have to either tell some people that you are on chemo for the next six months and will need to make some adjustments and will need some help / understanding ... or you are going to have to adjust your workload, your study load .. get some extra help with the kids .. something.  Do you have family and friends you can confide in who will help you?  You'll have to figure out how to do a re-org on your life .. continuing at the pace you are is brutal while on treatment.

Good luck.

Trish

[mommaglow]

Thank yu everyone, I am feeling like a big winer. fOR THE FIRST TIME IN MONTHS I DO NOT FEEL SO ALONE Since I have not told anyone what I am going through, it makes things much harder. I was not told how bad things would get, they told me that since I was young and healthy I would have practicly no problems. I also have no liver dammage , but they told me I needed to start tx right away so that I would not have problems in the long run. I am not a dumb person - I am almost through with nursing school and have worked in dialysis with hep C patients for years, but I never knew anything about it the diagnosis was a shock and honestly I just moven I never eventhought. I had no Idea that interferon was a chemo drug and I had no idea it could efect me like this.   I wish I had steped back and done some research first- becouse Iwuld have waited

[GSDgirl]

So glad that you are feeling better!!!!  Many ups & downs through the 6 months of TX.  

Denise

[Jeff88]

You are undetected at 4 wks! This gives you an excellent chance of getting rid of beating the dragon. As others suggested, get rescue medications, but don't give up!
Keep on fighting, you made a right decision because new drugs will also include interferon and ribavirin. Best of luck! Jeff

[Mary4now]

You go girl....I'm a wimp, I'm waiting....
Just tell those that need to know something that you are on chemo (as suggested) and tell them whatever you need to get through.. A form of GI cancer.... and you'd rather not talk about it, your still trying to assimilate it all...
Give yourself time to adjust...   I wish the very best outcome for you.. M

[IAmTheWalrus]

It is amazing how much it can help just having someone to talk to that understands your problem. I know how much difference it made to me. I like Meki's advice (though I know nothing about being a mom) and I agree with Trish that you were not adequately prepared by your physician for the upcoming battle. But, you can still do this.

Here are some things I would keep in mind:

1. Don't let depression get the better of you. This TX causes depression. It is one of the most common reasons for termination of treatment. There is nothing wrong with you if you need help. Anti-depressant drugs are often helpful (your Dr. should have mentioned this and pre-screened you for risk of serious depression).

2. You are (apparently) genotype 2 or 3 and your viral load was undetectable at 4 weeks. You are nearly assured of a sustained viral response if you finish TX. It may seem ridiculous now, but you are very lucky that you have to treat for only 24 weeks and have such good odds of a successful TX. Many treat 72 weeks at a time and some have treated many times over with different therapies without success. I am not trying to diminish your dificulties, just to get you looking at the bright side (and there is one!). Keeping that in mind might help you.

3. Post here often and get support, comfort and advice. Don't ever feel bad about whining here. Everyone understands and will be sympathetic. Sometimes it can be a little fun, and you will get some laughs and chuckles at the oddest times (the Friday Night Fight Song is always amusing).  :)

Well, I'm glad that you feel better. I hope something I said will be valuable and nothing I have said will be seen as negative.

God bless,
Brent

[susan400]

Bless you....   I know, I know, I know....      I can only tell you how I do it and this is not for everybody, but it works for me.   I am a believer in Jesus.  I am not trying to preach at anyone because I know that not everyone shares my faith.  So, for me it helps me to lean on him and pray-pray-pray because each day has it's new worries.  I also have all my friends and family praying for me to finally clear this virus this time.  But, so far, for me, that has not worked out to be in God's plan yet.  But, I'm not going to give up on my faith because he may have a different plan in mind for me and somehow be using my struggles in some way.  So, I just try to make it through 1 day at a time.  I try not to overdo it and if I can at least accomplish one task that's on my too do list, each day, then, I praise God for helping me to do that.  Like yesterday (BTW I'm on TX w/triple therapy), I felt bad, but I said, I HAVE to do something besides laying around here like a big blob.  "LORD, HELP ME PLEASE!"  So, I forced up and decided to run my vacuume cleaner and at least do that much.  And I was glad to accomplish that goal.  Then, I said, I'm going to rest for awhile and go to the grocery store because I HAVE TO DO THAT.  So, I forced myself to do that.  And I was happy to accomplish that goal.  Then, I rested a bit and said, "I need to get up and stretch and move around and get some circulation going in my body".  So, I literally, finally got on my treadmill after it had been idle for the past 2 wks.  I started off very slowly. And eventually I made it through 20 min. and I was SO, SO surprised that I was able to do it.  I was going to shoot for 5 min. and I actually made it through 20 min.  So, overall, it helped me tremendously with the depression.  Today, I've made a plan to force myself out to go to lunch with a friend from my school days like First grade through 12th grade days.  I haven't seen her since High School graduation and now I'm seeing her on Treatment.  Do I have a screw loose or what?  Anyhow.   I've had to be on Neupogen before in the past and I know how much muscle and bone pain that you get from it-bless you dear!   My white cells started out below normal this time, too.  A nurse from Mayo did some research for me when I was doing a trial there last year (and I wasn't allowed rescue drugs) and she found some studies that referred to Shitake mushrooms helping to stabilize decreasing white blood cells.  I can't take the Shitake mushroom pills or anything, but I am allowed to eat them.  I actually don't care for the taste too much, but I clean them well and toss them into soup or stir fry or through them on top of dishes that I'm cooking.  So, far, it's helped my neut.s keep from dropping into the 'decrease your meds or Neupogen' zone.  So, I think that I'll keep doing it for awhile and see if I can stay off of Neupogen.

Susan400

[Trinity4]

You my dear girl, are an inspiration!!  I know you have been down to the depths of hell and keep coming back with kindness and concern for those in this struggle.  Truly amazing!!!  You are so right about one task at a time.  I will not tax myself to the point where I hate my life and everything around me.  Somedays it's baby steps - somedays giant steps.  I think the "TX GODS ABOVE" are having fun with me because they decided to give me ice pick like pains in my back and head after Friday's shot.  Pretty much had it throughout tx but shot my mouth off the other day saying I'm finally feeling like my old self again.  HA - that's what I get.  And they can pull out the ice picks anytime now!!! Just never know.
Trin

[mommaglow]

  Thank you. I started on anti-depresents the day after I was diagnosed- I had severe post pardom depression last year- yes I still have a little baby- so I was afraid that even the thought of Hep C would send me spiraling out of controll. I watched 2 friends die of hep C becouse they did not want to do interferon, that is why I started without even doing any research. The depression is more of me not being able to be the care taker I have always been. I have never missed work for any thing, and now I am lucky I amke it three days a week. Prayr IS THE ONLY THING that keeps me going most days. Without my faith I do not believe I would even be able to get out of bed. However, my heart aches for those of you that have to go throug this for a year or longer. You are truely amazing people, becouse I do not know that I would have the streagnth to do that. But God does give us what we need. If I could just accept what I am going through and slow down maby I could  I cannot tell you how much I needed to talk to others and realize that I am not just being a big baby. I took a group of 5 kids 6 years old and my baby to the amusement park (the day after my shot& first dose of neupogen) thinking I would be fine. I was so sick all day I was crying and the kids were mad becouse I have ALWAYS been the fun mom, how do you explain to them that you are not yourself. I thought I was just overreacting untill I found this blog site and realized I am not alone in how I am feeling. God bless you.