A Newcomers Opinion

[NewandConfused]

Thanks to a few members here on the boards I have decided that I might have to step back for a while.  But before doing so I hope you will allow me to explain some things.  I came here, terrified, confused and  overwhelmed. The kind souls here have eased those emotions, answered so many questions and given us strength to attempt treatment.  I am so grateful for that!  In return I have tried to be caring to others and supportive to others which is all my limited experience with this virus allows me at this time!  

That being said I know that many of you were concerned with the treatment that we were offered. And to be honest your opinions scared us even more.  To summarize it we were only given 800 mgs. of riba daily.  And we would not be given any meds to treat sxs or rescue drugs.  The drs. that we had available were just not willing!  Hubby has had four major surgeries this year and physically was a little beat down.  There had been no income since last November due to the medical issues and with insurance benefits threatening to run out he simply had to be able to work!  All of these issues factored greatly in decisions made.  He deicded to move forward with treatment at the levels and with the conditions that were offered to us.  The one thing we did fight and win was the blood tests and the vl loads, etc.  Believe me I have read and listened and dwelled over every comment that told us how wrong this was.  But for us, at this time it was the only option.

I expected that people would respect that and get over their own ideas and impressions.  Each individual is different, each situation is unique.  We signed up for this battle, knowing we might not be victorious but darn it we are willing to give it the best shot we have!  I did the research learned what I could,  did what I could but that is all I can do - I can't force the dr to do differently!  Don't you understand that?  I thought that the support and concern and caring on these boards would understand our situation.  We are still human, we are still treating, we are still fighting.  I do not feel that I have to justify that at every corner, or explain every little difference.  

It is so hard to find the answers and the hope throughout this treatment and at this point I feel hope slipping between my fingers. Certain people have constantly reminded us that they do not feel we are treating properly was that really necessary?  I heard them once, twice, I considered their words, I took the time to explain why, I got second opinions - I did everything I could!  I most certainly do not need to keep hearing the same tired story!

I am new here and I do not wish to start any problems, rather I will take what little hope I have left and move on.  So many of you have been so so helpful and I will be forever grateful and I most certainly wish you all success in treatment and SVR!

[Texas714]

You are in a scary situtation...I know the feeling.  It's only natural that you are a bit emotional and sensitive.  Some days are just better than others.  You can feel really down and alone facing this disease....and that is one good thing about this place.  You don't feel so all alone.  That, in itself, has been a comfort to me.  I hope you reconsider.
Good Luck to you, whatever you decide.

[fretboard]

I hope you re-consider whether you have left for good or will come back at least to let everyone know how you and your husband are doing.  HepC is totally individualized, of course there is one constant that has been put forth as the number one rule of thumb, which is tx aggressively.  The aggressive tx consists of 180mg. of Peg and 1200 mcg. of Riba.  If you were prescribed less, then there was a reason for that.  With that said, there are alot of passionate ppl on this forum.  Most have been thru tx and have a whole truck load of reasons for answering the way they do.  Most answer from experience, or the experience of others they know.  Sure they may have beat you up in a sense to relay the importance.  I wouldn't appreciate that either, but no matter how you look at it nobody ever dis-respected you intentionally.  If I were you, I would just let it roll off of my back.  You stated how you felt slammed with the same information over and over, and you seem intelligent enough to figure all this out.  If you choose not to come back, then that's a shame.  I see that as our loss, but also yours.  You finally got so tired of hearing the same krap over and over again that you said so, everyone heard and if necessary apoligized.  I wish you the best, whatever you decide.  God Bless  

[HARRYBEADS]

Jasper

Ya took the words right out of my mouth, weight based!!!
Thats what I was given and no rescue drugs but lowered the dose of ribavirin for the low hemaglobin.

New and confused

I wish your husband the best, it sounds like my treatment and I beat it.

Harry

[Deb_c430]

That was what I got out reading that as well,   his surgeries and they were broke,  

Deb

[geterdone]

I’m not the brightest bulb in the pack here But did anyone seem fit to pick up on the fact that this person had 4 prior surgeries and maybe that is why his DOCTOR has him on a lower dose of riba as to his weight base regimen? We don’t know this person from Adam other than what has been printed and the person writing is just as much as a nit wit and don’t know what the **** what she is talking about as we were once when trying to find information about hepc and all that goes with it.

jasper

[meki]

New and Confused...

First I want to tell you --- This board has a LOT of caring and LOVING members.

About what they say ---- it's the things we've learned all through our treatments and the treatments of others that we have listened to and studied --- We may not always know the proper way to say things though...

But we are all only individuals sitting in front of a computer monitor.

Each situation.

Each person...

Each Doctor...

Each Treatment is different...

Yet - we are all the same.

As to whether your treatment plan is right?

Who am I to say?

But I can tell you this:   If you believe getting a better dosage of medication would be better for you or your spouse --- and MONEY is the issue...

Well --- there are programs available...

Each of the pharmaceutical companies has a program to assist with those medication payments...

So if your insurance will not cover the right type of meds --- so your doctor is cutting back to deal with your insurance....

Then it might be a good idea to check into the companies and the websites for those programs...

If you believe --- through research that a higher dosage would be appropriate for your husband and yourself.

If you are comfortable with your doctor's decision - then far be it from me to tell you differently --- or anyone else.

They can ONLY tell you their opinions.

And a lot of the folks here have some darn good opinions.

It is always nice to have good folks on the boards... As with any forum we alwyas will have a nit wit or two... BUT --- OVERALL - the company here is good.

Take that into consideration before you decide to leave.

And don't take everything you read online personally --- don't just take someone else's opinion...

RESEARCH --- RESEARCH --- RESEARCH --- and then research some more!

It's very nice to meet you - and I hope you choose to stay and learn more about this disease --- the treatment and more --- we could really use the help in helping new and confused folks...

Who are in the same position you are in.

Much luck!

Hugs,

Meki

[merryBe]

points all well taken. I think my point was to encourage her to find out more, and not freak out. I wasn't here for the original conversations, so had no idea what the rational was, or even if she was living in this country or another.

that last point has been driven home twice to me lately, once by a TP patient who couldn't get help at his TP center, or afford to get there...
once by an immigrant having no chance of tx where he was located.

It's great that many in here have such a vast knowledge of what should be done, and it has helped countless numbers of us, myself included.
That said, we do need to be aware that some are going to become very discouraged if they cannot get the treatments we recommend.
As you know it took me 6 months to convince my doc to use Alinia, so I know the frustration of knowing there's something out there that can help, that they simply won't give you.

As much as we would love to see everyone fight hard for their own treatment, AND win, I don't think Newand confused should be castigated for voicing her frustrations.
She is only voicing things that can make us better at encouragement if we let it.

I realize it gets frustrating when one has spent the years you have convincing folks, especially the chronic drinkers, and milk thistle huggers or the errors of their ways, but I still think New needs to be encouraged, and I think she should demand, in writing a statement from her doctor as to why he is not giving her SOC so she can take it to another hepatologist.

I don't disagree with any advice you may have given (knowing you pretty well, I know what it was, and why : )   ).  That said, let's remember these are two hurting people we could still be of some help to.
mb

ps. I don't see where you got the idea I was critizising anyone's advice. All I said was, what that weight may have been a factor. My apology was meant as a corporate olive branch, meaning none in here are perfect in our deliveries and compassion is not easy to communicate in type set...actually it's the one thing that seldom comes through the written word, so I apologized for us all, we all fall short of grace, and maybe New should
cut the group slack for trying to care however imperfect their delivery, and the group try to remember what the early days of scary news and clueless docs AND riba poisoning can do to a person, and cut her the same slack. That's all.

mb

[Trinity4]

As with anything, advise is only useful if you apply it to your life.  Some are more forward with their approach, others don't know what the h-e-l-l their talking about sometimes (I've been one of those) so to take all thing literally and to heart is not the best approach on a public forum.  Agree to disagree and move on.  If people had approached me with kid gloves when I first posted, I wouldn't have been nearly as determined as I am right now.  Oh yeah, I got angry, and I wanted to hightail it out of this forum but I got smarter too!  I don't always agree with jmjm, and I don't understand MB's diagnosis and advisements for testing on alot of things but I appreciate the candor and sometimes have one heck of laugh about it.  There is no malice here, just opinions based on experience. (or lack there of sometimes).  It's all good -  
Trin

[geterdone]

Damn it people! we just lost another one to the dark side.

geterdone

[jmjm530]

Like NAC, you seem to be taking this personally. No one is criticizing or looking down on anyone's standard of care, we're simply trying to share what we have learned is the best care for both the poster and for anyone else in a similar position who reads the thread.  One thing that seems to differentiate MH from some of the other sites, is that our members tend to seek out the highest SOC and most recent research articles and not settle for the lowest common denominator. MB, like yourself, have decided to criticize how some of the advice has been given, instead of simply stating your opinion on how NAC should proceed. If there is a "feeding frenzy" here, both sides of the trough are well represented :)

-- Jim

[portann]

Hi Jmjm,

Thanks always for your generous input.

I thought some of the issues MB raised in her post to NC were important. And MB, like the rest of us, of course know you give good advice with good intent.

Still, at the risk of offending you and biting the hand that feeds us, you can be insensitive to people's lesser circumstances, who struggle to put in place what they can. Not everyone has access to the top hepatologists in the country. I, for one, am relatively well off but have in place what you'd call out-of-date care. Honestly, nothing could galvanize me to change it right now and I just coast along. I know that's incriminatingly pathetic of me, but there you have it.

And there are many like me, perhaps the majority. I know I'm the best informed of my hepatogist's current patients (5000) and I'm among the most ignorant ones here in the forum. It's relative.

I'd hate to be hounded out of town because I don't have my eyes wide open as you do.  It is okay to burst bubbles in the greater interest of what you think is the hard truth but how many times is it necessary to beat a dead horse? NC is not even here anymore and is getting the care she can, perhaps now feeling hopeless rather than a bit hopeful. Truth is the higher good, is it not?

Even if the doctor is unjustified in 'underdosing' or withholding rescue drugs, there is no need for a feeding frenzy. Pounding away at this is futile and hurtful, especially because NC is a caregiver and desperate to do the right thing.  Believe me, NC will remember to her dying day what you consider the best option for her husband to be. She knows, as do we all, that you never speak in forked tongues.

By the way, reading most of your responses is my daily anti-depressant, although my backward doctor tried to deny me this rescue drug by cutting off my internet connection. Most of us newbies rely on you. If I had a wish, you'd always stay above the fray; otherwise, I'll have to beg, borrow and steal AD's from my hepatologist, who I suspect is already on them.

Have a great weekend and thank you sincerely for all your excellent advice. You're a gem, except on the rare occasion when you get on your high horse. And you've educated thousands, prof.

[MrsOckert]

I'm sorry you feel the need to pull away from here.  When I first joined there was a lot of information to be culled from the archives.  I'm also sorry you feel that some people told you the same old story over and over, but I don't believe it was meant that way.

I learned a lot in here and I took everything to my gastro.  Unfortunately, it didn't work.  He had his way of doing things and NOTHING I said made any difference.  He refused to give me a 4 week PCR.  Absolutely refused.  He was standard protocol all the way and there was nothing I could do about it.  So I know the position you find yourself in.  You can't do anything to change his mind.  Good luck to you.

[jmjm530]

CA: I thought there was a new protocol in treating geno 3 but both zazza and copywriter says that there aint yet.

Although the hospital where I am treating, which happens to be the biggest or perhaps the second biggest in Sweden they have changed it to have 4 week vl and also extending tx if not UND by week 4 in using taqman<15iuml, and also weight based riba for everyone.

------------------
Depends how you define "protocol". When cutting edge liver specialists start changing tx based on studies, etc -- such as appears to be the case with your medical team -- it's their protocol and then later often becomes a more widespread protocol as word filters out. When I started treating here I was given flack for suggesting a week 4 viral load test for genotype 1's because most docs weren't doing it yet although many liver specialists like mine were starting to based on the current studies back then. This is a very fast moving field and by the time it's in ink may just be out of date.

-- Jim

[comeagain]

Bye everone getting weight based riba of course I meant if there aint any medical
reasons that says no. Goes for the interferon to.

[comeagain]

She also had to struggle to get a 4week vl the doc only wanted to give a 12 week vl which is the old protocol, I think many doctors are following that because there probably aint no new one ( officially) except you can convince some docs to change, and many that are up to date have changed it without anybody has to ask for it.

I thought there was a new protocol in treating geno 3 but both zazza and copywriter says that there aint yet.

Although the hospital where I am treating, which happens to be the biggest or perhaps the second biggest in Sweden they have changed it to have 4 week vl and also extending
tx if not UND by week 4 in using taqman<15iuml, and also weight based riba for everyone.

So if its not here yet it seems like in a very near future its gonna be a change.

Otherwise I`m totally in agreement with copyman in everything he said.
I was thinking exatly the same before I saw hes post I  just couldn´t formulate it that well.

ca

[jmjm530]

MB: without knowing the particulars of the case, I'd venture a guess that the oath docs take to "do no harm" plays a large role in how much medication one is willing to risk with each patient.
--------------
Really? You've been on this site long enough to know that many people are both underdosed and under medicated for side effects all the time.

And it has nothing to do with "doing no harm" -- it often has to do with just not being up to date on treatment protocols, as many GPs and GIs simply aren't.  

So why do just assume all our advice is wrong and her doctors are right? Did you read the part about her doctor's not willing to prescribe any ADs or other rx drugs for side effects?  And btw her husband -- the one treating -- is not "100lbs soaking wet". He's 195lbs, according to FLGuy.

So your advice is that her doc is probably correct? So why do you echo what we're all saying that she should get a second opinion? That was the point we were trying to make that to paraphrase you words ' didn't get her the support she needed'.

Was your doctor's advice correct when they told you to stop treating? Did you listen to your doctor?  Not if I remember correctly.

-- Jim

[merryBe]

sorry that above post was to you.

[merryBe]

without knowing the particulars of the case, I'd venture a guess that the oath docs take to "do no harm" plays a large role in how much medication one is willing to risk with each patient. Someone who had already endured 4 surgeries that year would undoubtedly be considered higher risk, high enough to make SOC dosages potentially harmful or even fatal.
A lot depends on all ones other conditions. Enough other health issues and your chances of being able to tolerate the tx drugs go way down.
Also, even one mental condition, such as bipolar for instance, can increase your chances of committing suicide on tx drugs ten fold, so docs are very cautious and reluctant to treat too aggresively with a whole host of conditions. That said, people so still SRV on 800 mg. and it is still a dosage used in all the major trials, in fact, it's one medicine aspires to reach with all patients as soon as it can, being it's the hardest drug to tolerate. As soon as anything new that helps knock back virions is proven the chances are most all patients will then be given that lower dose.
Jim and others are right, your chances do go down as dosage does, as a general rule.
However, if you are 100lbs soaking wet then 800 is far more appropriate for you that the 1200 they give to a 200 lb person. There is still debate in medical circles as to the wisdom of one size fits all vs. weight based tx. for both drugs.
In any case, without knowing all the particulars, I'd still encourage to take hope in what you can get. At the same time, you may want to seek out another hepatologist for a second opinion. At the very least he may confirm your docs reasoning, or he may offer info that will help change your own docs mind. (this is what happened in the case of my second opinion).  So sometimes even docs who know each other well will rethink things when they know a peer has looked in on their case.
mb

[CoWriter]

Maybe you should put a disclaimer on all your posts.  How about....

"If you don't want to hear the truth then don't ask me"

LOL

[jmjm530]

First sentence, second paragraph should read in part:

"...such as a doctor who will NOT help..."

[jmjm530]

Again, I'm sorry New and Confused (NAC) took things the wrong way, but I don't think the advice given was too strong, insensitive or not respecting respecting someone's choice -- as some posters have suggested in this thread.

Personally, I see a disservice in soft peddaling certain kinds of advice/opinions in cases where there is an obvious wrong -- such as a doctor who will help with or not prescribe rx drugs for sfx's. To do such may convey this is common practice, or convey a lesser call to action for a situation that requires a stonger one. Just how sensitive is this to someone looking for answers and an SVR? To others in similar situations reading these threads?

I re-read most of the advice given and it was all good advice with good intent. No one was criticizing the person, just the treatment being given.

-- Jim

[proud48]

I found this forum almost 2 years after I completed Tx. and I wish I had known about it while treating. I was very fragile and probably would have had my feelings hurt with some of the strong personalities. I think everyone here wants to help and may not realize how some people are more sensitive. I hope you will remain here so you can have the great support. I had no one in this world that understood  what I was going through to help me during the darkest time in my life. I did have God and my faith but could have used this forum greatly.
Love and many prayers,
proud48

[proud48]

new and con

[copyman]

I agree with the others that we were just trying to help you but I will not tell you to stay. That is a choice you have to make. Most long term members on this site know more then most GI's about HCV and how to treat. If you don't like being told the truth then maybe it is best you step back for awhile and come back when you need some real "truthful" answers.  I will say goodbye to you for now.

PS, if it is just hand holding type support and all yes answers try janis and friends. that is a great website and sounds like what you are looking for at this time. Wishing you the best