Pulling Myself Off Treatment !

[kickboxingmom]

I want to let everyone know that I am pulling myself off of tx.I had to go to Dr. this week because I was so sick.Normal ekg and lung x-ray but I can't breathe and know it's time to stop.I'm not whimping out.I'm not a quitter.I weigh 91 lbs. and know at this time I can't continue.This forum has been a real life saver for me and the people know who they are that helped me.As my family was telling the Dr. you don't see what we see and we want her to stop.I looked at them and then Dr.and knew .I am a 1A and grade 1, stage 0.I figure I have time to wait for the new drugs.
All the SVR's on the new drugs ! I'm not a scientist but duh !
I want to Thank Everyone.I have made my decision.I did do my 12th. shot last week and will finish the riba.Also I did do my 12th. week pcr this morning.
I do not want to discourage anyone.My health has to come first on this one.Good luck to the newbies !
Thank you to all who have helped so much.
Good luck to All whom have tx, getting ready to start or to the ones who haven't had such luck.My heart goes out to you ALL !
This is some serious drugs going in our bodies and serious decisions have to be made.Good Luck To Each and Everyone of you and Your Family Members.
Thank You, Tammy

[zazza]

I figured. That is so sweet of you!
Za

[kickboxingmom]

I know you PM me last night but I wanted to tell people I really do appreciate you !
Tammy

[kickboxingmom]

I made a spelling mistake -breath not breathe.

[zazza]

I wrote you the PM! That was my response! You know my heart is with you and that I think you made the right choice. I think it was very wise of you to go the 12 weeks and get your 12 week PCR so as to get as much information from this tx as possible. That will help you so much in the future when deciding what to do and when to do it.

Now just enjoy life and gain some weight, girl! Maybe make one of those nice cakes you bake?

Love you too,
Za

[kickboxingmom]

GreatBird--- You have such a BIG Heart.Your words were sweet and very comforting.I just don't feel I can be as I once was with this in my blood, you know.I still support the gym-my daughter goes everyday.I've just backed off.I love the people there and they love me.Now that I'm off these drugs I WILL be back there soon.I know the children need me and I need them.I will ALWAY'S be around for children.They are somehow in my soul.

jdwithhcv---Thank you for such well spoken concern and well wishes.I wish the same back to you.I want to see you change your name---jdwithouthcv ! Thank you...

R Glass--- You are still family so don't be a stranger.You bet I am.Proud to be ! Giving you brother a BIG hug.Thank you.

jmjm530--- Thank you.My NP said, my time for the 12 week pcr was Feb.03 so I wanted to take Ribavirin as close to that date as possible/ and IF I didn't take my 13th. shot I could possibly CHANGE my mind and return back to tx without hurting myself to much.
I know now, I MADE THE BEST CHOICE "STOP"
Yes, I stopped the riba this morning.My body told me again.It's hard to let it go.It's like a mission.You are a kind man and have shared so much information from the first day I logged on.I want to give you a HUGE hug and Thank you.Holding out my hand.Shake and thanks !

Isobella--- Thank you nice lady for the well wishes.You are in my well wishes Book !

Trish77--- Yea you scared alot of people when you went in the hospital the last time.It's a Horrible feeling when you look in your childrens eye's when they are shedding tears for you.You'll STOP at Nothing to make their fears all better.I respect you lady.You are an Inspiration to alot of people and have not a problem to tell someone to get the over it.hehe.Thank you !

apache1---I'll hold my breathe for you on your First week Post PCR next week.Good Luck to you ! I can't hold my breathe for you but I'll take a Deep one for you.That didn't sound good at all but meant to be.I'm gonna leave that but know I will pay for it.Thank you.You'll get back in shape.It'll take a little longer and make you fight a lot harder but you will be healthy again.Let us know how you do and what your pcr results are.

zazza--- You haven't responded but I want to say Thank You Girl-You are my favorite !
I love you.

[apache1]

imo you made the right decision to stop. If I were you, would stop the riba immediately, not continue with it as you said you were.

I was dx last june, stage1-2 and just stopped tx after my 20th wk shot because of kidney functions tanking, and some other things.  Und since wk 4. Was dose reduced at wk18 to 135peg and half riba for the last 2 weeks of tx.  

I had few side effects.... but now my kidney functions have tanked, my thyroid got hammered, and my uric acid is sky hi now.
I repeat, you did the right thing stopping. I probably should have stopped when you did at 12 wks.
I had perfect kidney and thyroid function before tx and had no RA.  
For me, it kind of cumulatively crept up on me, I did not want to admit it, but by the end of tx its hard to deny how much these tx soc drugs had really effected me.

Don't get me wrong, I feel pretty good now, last shot was 33 days ago. But I will be surprised if I ever am athletically and endurance wise the same as before soc tx.
I could bench 400lbs and run 3 miles without hardly breaking a sweat before tx.

With your zero liver damage, imo you should live your life normally, don't worry. Await advanced medicine for a less toxic more timely tx. It will be available. Here is one that looks promising in the future.
http://www.hivandhepatitis.com/hep_c/news/2008/040108_c.html

With your stage of liver damage, you have the option of waiting maybe decades for much better tx, maybe without inf and riba. Just be diligent on the 'watch' part of the wait and watch approach. And you just might have to pull back on the blood sports a little, or take a little more precautions in some bloody situations.

Our journey is not over yet. Time will tell what our outcome is.
My first post tx pcr is next wk.

IMO, in the not so distant foreseeable future, there will be new medical cures for many of our chronic illness.
You have got time on your side, unlike many with HCV.

Sorry this round of Tx didn't work out for you.
Hope you feel better soon, and you will beat this HCV in the future.

apache

[Trish77]

Hi Tammy.  My heart goes out to you.  Treatment really is a crapshoot and these drugs are no cakewalk.  If it makes you feel any better, I also chose to treat early with low level liver damage and did not rush it and weighed it out intensely based on a great many factors and decided to go ahead.  I don't advocate treating early or treating late, despite my own decision.  What I'm saying is that it's an intensely personal decision and we do the best we can to make such a difficult decision based on our own life and health situations.

It is not at all an easy decision to end treatment either, particularly after putting so much effort into the decision to start in the first place.  I don't want this to become about me so all I'll say is that I know how hard that is .. my immune system was such that they pulled me off the trial at 34 weeks, along with anyone else on our trial and some much earlier.  It took a long time for my immune system to rebound and then a final kick at the can was a perforated appendix.  It was a scary time while they drained the infection out of me daily and hoping my immune system had enough fight in it to fight back.  It was also the first time I saw my daughter cry the whole time I went through the ups and downs since diagnosis. If I had continued treatment outside of the trial, I wonder what shape I would have been in then.  Sometimes you have to call it.

You have to weigh it all out as you have done and make the best overall decision.  Mikki-Moe dealt with nasty RA while on treatment and it was horrendous what she went through.  I can only imagine what it has been like for you.

You are a woman with alot of fight in you and you have been great support for others.  I know you would not do this lightly.  I respect your decision.  

You are low level liver damage and you will live to fight another day and with better drugs and even more knowledge than you've already accumulated.  

I echo GreatBird's comments that you can take different precautions and get back to what you love.  No matter who it is, everyone should take precautions.

I understand taking the riba for 7 days past your last shot as the efficacy remains for 7 days beyond.  If you're going to take that Week 12 shot, the riba for 7 days beyond is okay too.  Beyond that, it begins to be of dubious and potentially harmful impact given your difficult situation.  That's my peanut gallery comment on that and you will choose what is best for you.

I also echo what R Glass said.  We're all on different paths in life and in treatment.  Dynamics change as a result as we go along but we remain united by our common goal of winning over HCV.  

I'm so sorry for what you've had to go through.  Please...take good care of yourself right now.  You will take what you've learned and regroup and choose a better path for you with the hard-earned knowledge you've gained and you will beat this another day.

Thinking of you.

Trish

[Isobella]

I'm so sorry to hear your news.  I wish the outcome had been different for you.  But fortunately you have other options.  It will be great when these new drugs hit the market and shorten tx times.  24 weeks will be so much more doable for geno 1s. Less is better in this case for sure.

Thank you for sharing your story.  You show that the decision to treat is personal and based on many factors.  You also teach a good lesson on basing the decision to continue tx based on response and risk vs reward.

You have made good solid decisions and will always be able to look back knowing you fought the good fight.  You have to listen to your body.  Your time is coming.  

I wish you all the best on getting your health back.  And all the best for you and your family.

[jmjm530]

The purpose of treatment is to do more good than harm, therefore stopping treatment is always a very powerful and strategic option that is probably underutilized because either the doctors aren't paying attention, don't care,  or the patient is not being fully informed or honest with themselves.

Given your zero liver damage, the slow response, and side effects -- there should be absolutely no second thoughts on stopping. I think if you had posted what was going on before the fact, as opposed to after, just about everyone would've urged you to stop.

I agree with CA that there is no reason to rush into the first wave of PI's as they had market. In fact, given your histology, you may have the luxury to wait years for even newer generation treatments that either may not be as dependent on interferon, or possibly not dependent at all.

You gave it a good shot, you've  collected useful information in terms of future treatments, any protected both yourself and your family from further medical problems in a treatment that might have been futile.

Given your slow response, is there any reason why your continuing the ribavirin? I think the 12 week test is a good idea, but you probably have enough riba in your system for a reasonable value and the sooner you get off the riba the sooner you will start feeling better.

All the best,

-- Jim

[R Glass]

I am sorry to hear the news, but I am grateful that you let us know. This is a testament on just how different these drugs effect each individual. You are a tough woman that is accustomed to pushing your body to the limit. I hope everyone that reads this thread, that has mild sx, realizes just how fortunate they are. Just because you stopped tx, you are still family so please, don’t be a stranger. R. Glass

[jdwithhcv]

I'm sorry to hear that tx has had such dreadful side effects for you.  I cqn understand why you choose to breathe, rather than tx!  That was the hardest part of tx for me, I simply could not breathe after any exertion - horrible and so terrifying.  HCV forces each of us to make such difficult decisions, and we must make them based onour own situation.  As your family pointed out, our doctors do not see what our loved ones see and doctors cannot possibly know how devastating these drugs can be.  It sounds like you gave it your very best effort and I hope your 12 week PCR result is good.  At the very least you have given your liver a break and bought some time to wait for the new drugs. Meanwhile, I wish you the best of health.

jd

[GreatBird]

Your initial comment made me so sad when I read:

>>I was fixing bloody and broken noses.Kickboxers, blood o plenty.When my heart and soul went back in their spots after finding out about the hcv.I could no longer share and help doing what I love to do.<<

I just want to say that there's no reason you can't still do this as long as you observe universal precautions. It's really important that everyone do this whether they know they have a transmissible disease or the person they are helping has one. You just never know.

I wish you the best of luck getting the aches and pains back under control and all the best.

GB--still in the trenches . . .

[kickboxingmom]

Mary4now--- Thank you for your sweet words.I only send you the best in deciding your decisions and making your life the best it can be.
Tammy

[kickboxingmom]

Thank you.That was sweet waking this wintery morning with snow all around , picking up my coffee and reading such sweet words from everyone.

Kristina538  --- You are a kind person.Your words were a breathe of aire this morning.
Love and Hope sent right back atcha...Keep that kind spirit and don't let anyone or anything ever change you.

frijole--- Yes your correct, my body is telling me it's time.Thank you for your sweeeeeeeeeet words.You are a nice nice person.

charm27--- Breathing is so important.lol.You prepare for things ahead because you know if you have to exert yourself to much- you gotta rest for a minute or you'll pass out.What can I say to you that you don't already know.You are just an inspiration of Beauty.

geterdone--- Know when to run.How funny.I'm running as fast as I can.You are funny.I read your posts and know I will always smile.

copyman---yes I had the 4 wk pcr and didn't even have a one log drop.I really wanted to succeed in this tx but due to health issues I decided to stop.My body tells me so.Thank you for your kind words.They mean alot to me.I have got to get other health issues under control first before I continue.Yes I know I'll be taking the same drugs in the future but with a newer drug.If I have other issues under control, Ill be better prepared for the duration.Shorter tx.Thank you.

justme53--- Thank you for your nice words of encouragement.Encouragement is just what they did for me this morning.Thank you.

comeagain--- God's most abounded love I send a wish back to you.I did read your article.Clipped and pasted.SCH900518, (518) Generally in phase 11a clinical developement.It does sound promising.You are on top of things and will have NO problems with your future.Your words are very refreshing.Thank you.

Thank you to one and all,   Tammy

[Mary4now]

I hope you're feeling better soon, and I commend you on trying to treat.  I'm not even there yet.  You did the best you could, hang in, lets see what happens next.
Mary4now

[comeagain]

Hi Tammy sorry to hear about your health issues.
Considering  among others facts your poor respons to soc I think it was a very wise decision you made here.

Just wanna say this, when and if you retreat dont take the first meds thats gonna be aproved unless you think their the best.

I know its easy to wanna take revenge at the
disease and treat as soon as possible without maybe thinking clear which is the best for your particular situation.

I my self if failing this second time are already determen to wait for that 10 time more
potent meds boceprevir 518 if it continues to look as promising as it has so fort.

http://www.medicalnewstoday.com/articles/130622.php

Youvé been such a fresh breeze here on the forum.

Gods most abounded love I wish for you.

ca

[justme53]

Choosing when to tx AND when to stop tx are two decisions that are never taken lightly. I'm sure alot of soul searching goes into the latter especially.  

You're right, you know...with your staging you can afford to regroup and wait for the new drugs.

I hope your body will bounce back in short order. Here's to continued healing.....Pam

[copyman]

sorry you have to stop. Having minimal liver damage it makes sense. I personally would have never treated in the first place with that low of a bx.
On the other hand did you do a 4 week pcr? if you were UNDE at 4 weeks and still on this 12 week pcr then you may want to consider pushing yourself to 24 weeks. This will give you almost the same chance at SVR as 48 weeks for a geno 1.
Please keep in mind that the new drugs will still have the same SOC drugs that you are stopping now included with them. If you couldn't handle them now not sure you will be able to in a few years. The good thing with the new drugs is hopefully a shorter course of therapy at 24 weeks. You are halfway there already. Best of luck to you.

[geterdone]

everyone has their own limitations in which to work and some exceed beyond that of their own capacity and sometimes to the determent of their health unknowingly doing more harm than good. The fight is not gone within; yet, you got to know when to hold em, know when to fold em, know when to walk away and know when to run. You never count your looses but look to the survival by knowing what your cards are when your dealing is done. Get your health back, rest, and be ready to do it again another time.

jasper

[charm27]

Sorry to hear your feeling that bad and cant breathee. I couldnt breathe either for 52 weeks it was HORRIBLE all due to a low HGB. I know..

I wish you all the health in the future. You are at a stage where you are able to wait for the new drugs in 2011.

You gotta do what is BEST for you!
Good Luck Tammy

Charm

[frijole]

It sure made sense, reading your reasoning, to treat, but your poor body just gave out on you.  Perhaps next time.  Perhaps the PIs. There are good things coming.

Be well, frijole

[Kristina538]

This would have been a difficult decision and I warmly empathise with what you've had to go through to come to this conclusion.  

I am much further on than you in stage but promised myself before tx that I wouldn't put myself at any huge short-term risks and would stop tx at any time without guilt or remorse.   I managed the 6 months, and with some, but not all, of the sx's that many have;  I don't know if I could've done it that long if I'd developed more;   it is different for each of us and we all take it day by day.

I'm glad you have your family's support and wish you the very best with looking into the  upcoming new drugs.   Hugs and prayers to you;  I can't see anyone disputing your decision and I send you love and hope for the next part of your voyage.  

[kickboxingmom]

I chose to tx after months of research and Drs. recomendations.Even Dr. Dietrich states the sooner you tx the better the outcome.It's posted on his medical forum.
Yes, my scores were low but I was healthy at the time and it felt like a weight was on me.I didn't want to even chance spreading this to my family or anyone.I wanted it gone.I felt financially too, made it right.I was at the time the lightswitch at the gym.Turn the switch on and there is Tammy.I was fixing bloody and broken noses.Kickboxers, blood o plenty.When my heart and soul went back in their spots after finding out about the hcv.I could no longer share and help doing what I love to do.Young men and Ladies , alot of children made me realize when I look into their eyes - I couldn't risk me giving it to them or my family.My husband has had crohns disease for 26 yrs.and to give it to him with his problems would be his death.I wanted it gone.    A few people told me to wait but I went ahead, not having the Rheumatoid Arthritis under control and taking morphine for that sure didn't help when it came to 4 week pcr and I was a slow responder.
Suggestion ! Get other health issues under control before st tx.
If you have the time to read, research and read some more about everything your going to go through.Learn more and be 100% positively positive...
I missed one day of work till this past week put me in bed for a solid week.It makes a simple thing like bronchitis seem like a heart attack.
Rheumatoid Arthritis, not under control, controls you and got so bad and still is with me.
jmjm530 and CoWriter both told me to wait for the new drugs.I didn't listen and they have become very good and dear friends to me now.
Fretboard-Your kind words are sweet ! Thank You !
Marc1955- Thank You.This is the first day I've been out of bed for the past week and my thoughts aren't competely straight but I hope if someone really researches before they decide to tx will make this post worth it to me.Your words are appreciated.

Newbies---Take the time and do your homework.Research.Copy.Paste.Save.Read some more.Ask questions on here.Be sure before you start treatment.
I thought I was.I'm still researching and getting knowledge under my belt.
Knowledge is Power ! One lesson learned = One has to be ones self advocate with this disease.Or that has been my experience.Good Luck To All !
Tammy

[Marc1955]

KBM - I don't think you should worry about discouraging someone with your unfortunate news. It's important that this board reflect the full range of experience with tx.

Perhaps you could say a little bit about why you chose to treat even though your scores were so low. I'm thinking that could be helpful to others. It's fairly common to read on this board about someone with low scores diving into treatment "because they just want to do something," without perhaps fully recognizing what can be involved. With the current state of science, the good news for you and anybody else with low scores, it that you're almost certain to be in position to treat again with more effective treatments in a few years. As you say, treatment is serious business and it cannot be entered into lightly.

Sorry to hear you've had such a bad experience. Here's to restoring your health soon, effective treatment in the future, and a long, healthy life.