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476246 tn?1418874514
4 weeks VL, NOT RVR
what a bummer..... my 4 week VL came back saying....

Hepatitis C (HCV) PCR: POSITIVE                               HCV PCR:  detectable, less than 80 IU/ml, not quantifiable


My hepa was happy that it had gone down from 1.3 million to that... Needless to say, that I wasn't too thrilled, as I was going for UND.

They don't usually prolong tx, but my hepa is open to it, due to the fact that I am geno 3a and partially Black American and that I'm informed and pushing. We had a great discussion and she will do another PCR at 8 weeks. I have stressed that if UND at 8 weeks I would rather add 8 weeks to treatment, than to risk relapse and do this whole thing again.

(I was referring to Dr. D's advice to add 24 weeks of tx after EVR.)

Now she is going to try and find studies supporting the fact to extend, if not RVR and I will supply her with what I have.

So what I would suggest is to go for 32 weeks of tx, if I EVR at 8 weeks. ( 8 + 24)


If anyone has any studies supporting this, could you please let me know... as the more literature I have on this, the better I can argue my point.

Thanks,

Marcia

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476246 tn?1418874514
Thanks for verifying your stand.

So I did NOT misinterpret your comment, as some of the people suggested.

You ARE telling me that I SHOULD be thankful for what YOU think is appropriate for me to be thankful for.

That is exactly the kind of condescending arrogance I cannot stomach.

I am really not going to get into this, as I do not feel the need to have to justify nor explain my spiritual beliefs nor my relationship to God, to you...

I will leave it at this.

I thank you for taking the time to try to help and for all the times you did help before ... but I will leave it at that.

Good luck to you too.

Marcia

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Marcia: have seen quite a number of members on the forum advise others to take Centrum Silver vitamins. They say that their Hepatologists recommend to them to take them while on treatment. There is 18mg of iron in Centrum Silver.
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Hopefully, you have not let that influence your decision not to seek another medical opinion about taking supplemental iron.

Centrum Silver in the United States has had NO IRON in it since 1999 and that is with hepatologists here in the United States often recommend it.

Here is the ingredient list from the manufacturer's web site:
http://tinyurl.com/42gd9t

The ingredient list may or may not be different in your country but that's not the point.
There is a reason hepatologists tell their patients not take supplemental iron but its OK to eat iron rich foods. You can not equivocate the two.

I'm not saying you don't need it, I'm just questioning it now like I believe I did back then. And if I were you, to be prudent I'd also be questioning it from a source independent from your medical team. At least that's how I approached things during treatment.

Obviously, it's good to have faith in one's medical team as you've stated, but not blind faith. If you felt they knew everything I doubt you would be posing questions here.

-- Jim
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I'll also add again my Critical Path (Pert Diagramatic) approach to treatment which in short is when stressed with time and energy to deal with priorities first, everything else later.

Your priority is now to become UND. Riba dosage and iron supplementation therefore are two issues that need to be addressed immediately, one way or another. The issue of how long you treat can wait, and in fact is somewhat academic since you're not UND yet.

Good luck.

-- Jim
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476246 tn?1418874514
Thanks for the clarification on the centrum silver, I must have been looking at an old list of ingredients on the net. We don't have centrum here.

Btw, my decision on taking iron had nothing to do with centrum silver nor with any info I got here. All but one person here on the forum seem to be strictly against taking iron.

It had solely to do with my own case and my own situation of deficiency. So far I have not seen anyone in the same situation as I am, here on the forum. I have seen many people concerned about too high iron counts, but none of too low counts pre tx. This might also be part of the reason I have coagulation problems.

Jim, please don't get me wrong... and I do not mean to be less than thankful for your concern about my iron intake, but I have at no time asked anyone's advice on the forum concerning me taking iron supplements.

I have placed questions about a whole lot of things, but not about iron.


Marcia

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476246 tn?1418874514
thanks for your second post, too.

you have stressed this several times now and I have read it.

Thank you
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I am REALLY sorry to see that this kind of thread is going on... !

Marcia-- don't take this the wrong way as you have stated in MANY replies to other members in this thread ! but don't you think you might have some RIBA RAGE going on!

When I share here and someone hurts my feelings I NEVER retaliate over and over again to that member and then to CONTINUE with other members!

This is ridiculous!

Who cares how long you have to treat!!! REALLY ! Just treat as long as you need to!
Bottom line is to get rid of this ****!

Lets stop this thread now!

Dorsey
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On this medication we get sensitive, angry, short tempered and many other things.  It's all part of the riba rage!  I truly believe everyone is just trying to help you the best way they know outside of being you, directly involved in your disease.

Calm down, take it one step at a time and see where it goes and make your decisions according to the results you get as treatment goes on.

Personally, If you could for the time being, stop taking other drugs such as iron and vitamins and try to eat a regular healthy diet if you can.  Being a vegan on treatment is not a good idea in my opinion.  You need minerals and vitamins from MANY different sources of food.  I was told to eat healthy and avoid other drugs unless they were an absolute necessity with Dr. approval.  You just don't know if anything even a vitamin can throw off treatment. My medical team never even told me to take my riba with oil or fat.  They said eat cereal and nuts and fruits as a snack and FRESH home cooked food in small portions.

Please don't take this the wrong way.  
I hope you the best with your treatment!

Rita


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As someone who started off hoping for 24 weeks, then 48 weeks and finally had to do 72 weeks, I say just do the time that gives you the best shot at SVR. Once you are SVR, the time you did will look short compared to what you gained.
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She does not have to do 72 weeks yet or 48 weeks.  She has a little bit of virus left and has to wait for her 8 week PCR before any more weeks are added on!  Too soon to tell at this point.  

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Zazza: geno 3s, As someone who started off hoping for 24 weeks, then 48 weeks and finally had to do 72 weeks, I say just do the time that gives you the best shot at SVR
------------------------------------

Only because this thread seems to lack controversy and drama, I thought I'd add my two cents to the above.

In general, "Zazza" is correct. The more ammo and the longer you shoot that ammo, the better your chances of SVR.

But to me, the real question is AT WHAT COST.

To me, an equally if not more resonable approach to extending is to stop treatment, cut your losses, gather your strength to fight another day. Especially if you have little or no liver damage.

This BTW is certainly not advice to Marcia at this point, or to anyone in specific, but just a general statement of philosophy as I believe Zazza's post was as well.

-- Jim
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The problem here is that most 3's get denied biopsy.  I did.  So we don't know where we are with damage and can only rely on ultrasounds which according to everything I have read are not all that accurate.  

It is scary not really knowing the amount of damage...

rita
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476246 tn?1418874514
Jim, I have been made aware that someone thought I was angry with you or something in that direction.

If I offended you in any way, it was not my intention at all... I really appreciate all your help and I think you know that... So if my words at any time sounded harsh towards you, I apologize.

Marcia
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476246 tn?1418874514
Thanks Rita,

I am not raging or anything. Maybe it is weird for some people to see that I can have strong opinions about things. Very often I have let certain comments roll over my shoulder, so maybe people are not used to see me put my foot down when I've had enough.

So no, I am not on a riba rage trip. My eldest son came over a few hours ago to cook some food for me and him, my youngest and I are having a good time.

I was actually only offended by one initial comment made yesterday and reacted on that.... Obviously that comment and my reaction to it created an avalanche...

You never know how things turn out, until they have happened. Maybe I should have just pretended I didn't read what was written to me... But maybe the other person should have thought about what she wrote to me first... There are always two to tango...

God bless,

Marcia
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No, I didn't get the impression you were angry with me, but thanks for the comment. It's unfortunate things have turned like they did. I like you and I also like everyone on your sh*t list although that thread appears to be deleted. Haven't been over at the Community side much, but if some of this has roots in those political threads -- another reason IMO why political and religious (discussions not simple prayers) should be banned.

-- Jim
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I don't have anything to say but I really love seeing this thread at the top of the page all day every day. It is a fascinating thread indeed. Oh yeah, thanks for your insight Jim. I was waiting for clarification about the forces behind the animosity. I mistakenly assumed it might be due in some part to the fact that there are so many posts (100s anyway) in a thread about not being undetectable at 4 weeks. This the first of its kind I think. And it certainly is a very thorough discussion of this issue.
Mike
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476246 tn?1418874514
Yes, actually, some of it looks like it started out then... But only with some. Some happened on this thread.

There will always be someone who thinks one is a total idiot and someone who thinks one is just the best. I tend to surround myself with people whom I have respect for.

Anyway, I was going to stop posting about this, as it is getting way too ridiculous.

And all in all I believe that the conversations on this thread have come to the point of being well saturated.... I will continue on my quest to try to kill the dragon... the same goal everyone on this forum has.


Marcia


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"She does not have to do... 48 weeks.She has a little bit of virus left and has to wait for her 8 week PCR before any more weeks are added on!  Too soon to tell at this point."  

I disagree with you here, Rita. As soon as you know you are not RVR as a geno 3, you should consider extending to 48 weeks. You should put your ammunition on getting this approved, not on getting additional viral load tests in my opinion. Nobody really knows how long anybody needs to treat, so it is best to go for the full period suggested, and for non-RVR geno 3s (if you don't consider specific doctors' own suggestions) it is generally 48 weeks.

I gather you do not know my history. I live in Europe and started in a confirming study for geno 1s with low viral load who got UND by week 4 and then only had to go 24 weeks. I had 2 chances out of 3 to be UND at week 4, but had 2900 IU/ml at that time.

Next goal was to be UND at week 12 and thus go 48 weeks. But at week 12 I was detected with less than 15 IU/ml. (Not 80, less than 15 IU/ml.) But detectable is detectable, not UND.

Doctors now suggested everything between 48 and 72 weeks. I did everything I could to convince myself that I would do fine with 52 or 56 weeks for example, but deep inside I knew already that 72 weeks was the only option for me if I should not regret an eventual relapse.

At week 69 my doctor wanted to take me off tx. I cried and fought it, finally finding facts which proved I could continue tx. I do believe I probably was cured already by this time, but in no way did I want to compromise my chances of SVR.

So in my opinion, as soon as you as a geno 3 are detected at week 4, extension is needed. I agree with nygirl that trying to find your own math formulas and "the secret Geno3a success ratio" is a waste of time. Let's leave that to the studies that are underway at present. Our job is to take our shots and our pills for as long as it is needed to get the best possible success of receiving SVR.
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I hope I was clear after 4 weeks.  I was told a big chunk of the virus was gone and everything was working as it should.  Back then that was OK with that info. since I did not read these posts then and was basically just trusting the MD.  Quest will not give me a copy of that first result and the next time I see the Doc I will ask for a copy of the test.  He now says I was UND at week four but the big chunk gone keeps me thinking.  I did stop after 24 weeks and hope I did the right thing.

I am sort of in a panic now wondering if he told me the truth.

Rita
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A big chunk gone could put me in the same position as Marcia.


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443974 tn?1224592928
Hi Marcia,  I have been MIA  all week.  Just catching up. Sorry about your disapointment, but you hang in there girl!  One step at a time!
I am with Rita on this one, wise words from a wise woman!   I was told the same thing by my docs. (though I was told to take my meds with Fat absolutly)  Getting our Vitamins ect from food, organic whenever possible, is far better than any supplements, which have fillers and additives  that could really mess with our Tx. We had the Milk Thistle debate 100x's here. It can speed up the digestion of our meds, and we don't want that, we want them in there killling this damn disease as long as possible, not pee peeed out too soon! ;)  


We all know we have a different physical make up and it is so complex. I am a geno 2 and was found UND at 4 weeks. Went from 37,000,000 to 5!!  I thought it was a miracle,  if you all remember my post!  But after reading this thread I am a tad confused now.  

My doc told me I would only do 24 weeks.  IF and it was a big If, I did not clear by then it was 48. No inbetweens, One or the other period.   He told me the only reason he put 24 or 48 on my paper work, was to cover any insurance problems that might pop up.  

Marcia you know I am one of those people who you did talk in legnth to about supplements. remember our shroom's ;)   experiences!  Crazy Danish horses! LOL

Every doc is different and I realize you live in a different country, as did I, but I was told under NO circumstance to take, especially Iron, supplements. I too am a vegetarian.  When I became anemiac my doc said I would rather have you eat some food with A BIT of  iron, than give you a shot of procrit and especially not iron supplemts!  He said NO to every supplement I was taking before tx, except Omega 3.  I listened reluctantly. Like you I was/am a big supplement alternative meds fan,but at week 4 was considered UND. Was this because I stopped all my supplements? One will never know. I just know the facts and numbers. Again I am only relaying what "MY" doc told me.

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443974 tn?1224592928
Had to cut and paste the rest of my post.... :)

I will do my 12 week labs tomorrow so I am a wreck hoping I have sustained that.  He also lowered my Pegasys does because my Liver enzymes started shooting up because of the dosage 180 ml.  He lowered it  to 135, my liver enzymes immediatly went back to normal with the lower dose. Again proving we are all different, complex machines needing different dosages.

I am very concerned about  getting my 12 week VL because if it has gone up because of the lower dosage I will be more than disapointed! I will be devastated I'm sure after achieving UND status with the 180ml dosage. But the meds at that level were wreaking havock on my liver enzymes they tripled since Tx and they were very concerned about that.


All of this talk about continuing after the 24 weeks, even if I acheive SVR,  to be certain I wont relapse, is quite frankly scaring the tar outta' me!  My doc said nothing about having to prolong anything?   Is relapse something common in Geno 2b's as well, if you stop with an SVR at 24 weeks?

Marcia your determination will get you through!  This is shot 6 sweetie...you can do this!  I did #13 last night and I am still here, a bit worn and torn and achy,  a little more aggitated than usual, anemic, border line Hyperthyroid,still waiting on  labs on that.
But still, as far as I know, UND at 4 weeks. I realize all the different geno types respond differently but
To think that my UND status means nothing if there is a chance of relapse is really scaring me! :(  
Any other 2bs out there that have any similar experience of relapse after stopping at 24 weeks?

Marcia sending you all the best!  And I say this with only concern in my heart for you,  I would definatly rethink all the supplements...you have a plethoria of great info and experience here!   I thank the universe  for those who came and conquored before us!

A tad confused Dragon Tamer!

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MS: I don't have anything to say
------------------------------------------------
We're in agreement because that's also what I got from your post.

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443974 tn?1224592928
One would hope we don't have to worry about our doctors actually lieing to us!!  Like you after reading all these posts I am kind of in a panick as well but I know it will do us no good to get stressed out over it.  So let's try to keep things in perspective and as I said in my post we are all different...the only thing that is the same... is we all want the same outcome foreveryone SVR forever!!!   We just each have a different journey to go on to get there!
We just need to keep the positive support flowing to all!! I know it makes a world of difference!

I will let you know when my 12 week labs come back next week. Everythings crossed.


When do you get checked again for SVR after stopping tx after 24 weeks???
I thought it was 6 months or so???

Hope all is well with you and yours....
Been a crazy time for me at work... I wish I could be here more often! I hope everyone is doing well and staying positive!  Please know you are all  in my thoughts and prayers whether I can be "here" or not.
There is always the "great debate" to look forward to tonight!!! LOL ;)  If anything can distract us from our ill's and worries it would be that !!!  ;)  

D.T  
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"I'm sorry if I somehow made it sound as if I was beat up over the result. That was in no way my intention. I was prepared that this might happen. There are no guarantees in this process. I was at no time VERY upset that I didn't make UND and mention at several occasions that fact won't get me down, but that I am working on a strategy with my doctor. My whole point of posting was to find out how long I should extend and not to focus on the actual result.

I'm sorry .. I just don't understand your response here and you have misunderstood ME completely.  You're sorry if you made it sound as if you were beat up about the result?  I was DEVASTATED when I didn't hit RVR.  Why on earth would you be SORRY and I was never ever suggesting that you should be emotionless about it.  You've completely misunderstood my comments and you're being very defensive for reasons I don't quite get.  My reason in pointing out the flow of your emotions was so that you would also understand the flow of the responses and settle down with the your defensiveness as nobody meant harm the way you were taking it.  A number of us have been there and stepped up to help in whatever way we felt we could contribute.. even though I'm well aware you don't care much for me.. and I'm okay with that.. we're still in this fight together and I just really want you to win.  So I threw in my own experiences and opinions.  I'm not sorry I did that, I hope it helps you.   We're all fighting this dragon and I want us ALL to win.

"So I didn't rule out it being a misunderstanding and nygirl could have just verified that and I would have apologized for misunderstanding her.... But nygirl hasn't been online yet and some of the ladies out of solidarity to her,  jumped me in her defense. "

Out of solidarity to her?  That's just utter bullsh!t.  I consider myself an egalitarian and I have hit nygirl VERY hard on this forum also.  I'm kind of weird that way. I said what I said because I call it how I see it, simple as that and sometimes I don't play the political game very well at all and frankly don't care to.  I'm more interested in people playing fair than people playing sides and I abhor that kind of behaviour.

Perfectionism is a nasty way to live.  Been there, done that.. it's not so great.  I'd suggest you let it go and keep it real and I even mean that gently...whether you take it that way is another matter but that is how I mean it.

Trish
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"I'll also add again my Critical Path (Pert Diagramatic) approach to treatment which in short is when stressed with time and energy to deal with priorities first, everything else later. "

Be still my hyperthyroid beating heart.  You speak PERT to my Deming.  I would ask you to marry me on the spot but alas, a border, a healthcare system, and your economy vs mine at the moment stands in the way.  I will have to settle for admiring you from afar, from the branches of a maple tree looking longingly in your direction.

Okay.. that's a bit much.. but geez, that was cool. :)  I mentioned Deming to give credit where it was due, is all and you tossed that back so nicely.  

Trish
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407029 tn?1253996223
I STOPPED IN TO SAY HI EVERYONE
MARCIA..I HOPE ALL GOES WELL
AND THE BEST WISHES TO YOU
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I agree with your post 100%.  I hope you are UND at week 12.  My doc says UND at 12 post is almost a guarantee for the 24 week post PCR.

I will be routing for you as well as for all of us!  My 12 week post is set for Nov 13th.  

Let us know how you made out!

Rita
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443974 tn?1224592928
Phew!!!   That takes some stress off of my worries...  some encouraging news.  Your post lab is set days before my Birthday...I will add your getting good news to my birthday wishes, when  I blow out my candles!!!! :)

Thanks for getting back on my post. I appreciate it! I had/have some real concerns after reading all these threads....always good to hear back from others when you ask for help...or take the time to offer your support...that is what this forum is here for and I am so thankful when I see it working in that positive direction.
Thanks again Rita.

Wishing all a peacful weekend!

All the best!
D.T
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524608 tn?1244421761
WOW....158 posts and not one juice recipe.
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412873 tn?1329178055
or clipper question................
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559277 tn?1330622339
or political debate .....
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412873 tn?1329178055
lol!  
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So, what’s wrong with doing 16,24,36,48,52,56, or 72 weeks with these wonderful meds? either way its going to either cure you or leave you with its remnants. I just have a slight twitch in my neck but I’m curd, twitch, twitch. But if your thinking of going outside of the boxes I’ve got an extra 360 riba pills and 1 inf and 1 procrit shot left over for the possibility of predosing if needed.

Bottom line geterdone
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What was the question again?...now im confused.
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372366 tn?1284407473
Yeeeehaaaaw gotta love that ribavarin ****.LOL

Wish ya the best on week twelve, are ya a gamblin women?

Harry
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217229 tn?1192766004
I gotta say something and it might clarify a bit...

Some folks can do this treatment for 72 weeks and live life comfortably --- or with the mild sides.

Some folks plummet at week 4 and can't get back up.

Some folks can do several rounds of treatment....

Some have to quit early --- or after week 2...

This treatment affects each person individually...

72 weeks of this treatment would have killed me... I would have been dead - gonzo -- couldn't have done it.

If someone told me I had to do it again --- I would find the nearest bridge --- say my grace - and be done with it. (figuratively speaking folks --- but you get the concept.... I couldn't have done it --- wouldn't have done it.)

So if someone who had nominal --- or mild --- or even harsh side effects --- and did 72 weeks... BUT SURVIVED... IT doesn't take away from them and their hard times on TX --- but it might make them feel like someone who only had to do 24 weeks were a bunch of pansies...

It might seem that someone who did 24 weeks --- were "lucky".

But I do not see it that way.

I did 24 weeks --- and was blessed with SVR --- and have since learned that is a very special and lucky blessing.

But the only way I made it through TX was one minute at a time...

I could NOT have done more time...

I came close to quitting - because I wasn't functioning... I wasn't capable of functioning 6 out of 7 days.

PAIN - Barfing - PAIN - Couldn't Think - Couldn't communicate - Could hardly move - could hardly breathe... Couldn't walk next door without Barfing or Crying or not breathing well.

And I thought those were normal reactions. Cause the doctors kept telling me nothing was wrong...

(LOL now.....)

Anyhow - sometimes it is hard to view that perspective --- yanno --- the one that belongs to someone else.

Someone who toughed out the 72 weeks --- they think --- "I WISH I COULD HAVE DONE ONLY 24 or 48 WEEKS" "Oh you're so very lucky to not have had to do so long..."

And someone who has had to quit due to complications --- or someone who has a TREMENDOUSLY hard time on TX --- They think --- "I WISH I COULD HAVE DONE MORE"

But in reality --- the length of time ---- truly ---- other than the ability to kill the virus --- is no different ---- it's how it is handled.

Each person reacts differently.
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217229 tn?1192766004
CONTINUED:


Again --- if I had had a walk in the park TX --- I could have done more...  But for me --- the TX was the hardest thing I've ever done. Everything else --- surgery, broken bones --- everything else pales in comparison.

And to me ---- I could NOT have done more.

So it's hard to hear someone say "you should be thankful you don't have to do more"....

I don't know if 3a genotypes are more likely to have a "harder" TX --- or not... The discussion has been interesting about the IR and the Steatosis... So there is a possibility that those might be causing --- or may cause more issues (at least in my mind)

But --- I know if Marcia is having a hard go at it --- especially so early on --- it might be hard for her to hear ----- "you should be thankful"...

When in reality --- going through it at all ---- for ANY amount of time is awful. And no one should be thankful about it... LOL! At least ya ain't hearin' me thanking anything about having to take the TX... LOL! Glad I did it --- but wouldn't do it again --- and thank goodness I got lucky with SVR...

I dunno if she's having the same kind of reactions that I did --- but if she is --- it's hard to hear things like that...

And on this TX ---- as we all know --- it is SO VERY EASY to let our emotions get out of hand.

I don't know if that made ANY kind of sense... But my brain was trying to read the answers to everything here --- and trying to make peace.

No one should have to TX --- it's horrible.

Some folks can manage it well..

While others cannot.

NO ONE IS SO LUCKY TO BE DOING THIS TX --- not now - not ever.

BUT --- it is what it is...

And I do love each and every one of you. OK?

So no more harsh words...

Don't try to infer things from what others write --- and if someone gets upset about something ---- just take a step back and relax... EVERYTHING WILL BE OK...

ALRIGHT?

It will be ok - one way or another...

We are all a big family here.



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Meki: Again --- if I had had a walk in the park TX --- I could have done more...  But for me --- the TX was the hardest thing I've ever done. Everything else --- surgery, broken bones --- everything else pales in comparison.
---------------------------------
The way you describe your treatment experience here is very similar to the way I would describe mine.

And please don't take this as a criticism, but why don't you talk more about your treatment experience in threads where people are asking if they should treat or not?

Many postulate that side effects are over-estimated here because only the "whiners" talk up, i.e. people don't talk about what an easy time they're having. My opinion is that many like you, who have had difficult tx experiences, don't talk up in certain threads because you don't want to discourage people from treatment.

My take is that people should get all the information we can give them. It's an important decision whether to treat or not, so there should be no sugar coating.

So speak up more girl, I know you're not the bashful type ;)

-- Jim
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96938 tn?1189803458
"PAIN - Barfing - PAIN - Couldn't Think - Couldn't communicate - Could hardly move - could hardly breathe... Couldn't walk next door without Barfing or Crying or not breathing well. "

And that's just from the monkey sex.

Treatment was no walk in the park either, I imagine
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388154 tn?1306365291
Runnig neekkie with meekie in the forest, once you done that there is no going  back I can imagen.

We better ask dr D what he thinks about doing monkeysex while on treatment.
Even if rumors says hes done it twice him self, I´m not sure he will recomend it .

Extended tx with monkey sex in the formula I´m almost sure will be out of the question.
But as said before we better ask dr D.

PS dont get lost in the forests in Alaska.
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388154 tn?1306365291
Just a tip.
I´ve heard that Matt Chin no longer is juicing and therefore is getting rid of his monkey suit selling it at Ebay.

Think hes about the same size as Jenna, just a tip if you wanna try something different jim.
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412873 tn?1329178055
"i.e. people don't talk about what an easy time they're having."

I am glad you mentioned this...it gives me an opening to say something that has bothered me as someone who is tolerating treatment very well.  There are three reasons that I don't feel comfortable telling many how "doable" tx has been for me(so far, lol!)

First-so many people that I care deeply about are having a tough time treating - it just doesn't seem right to talk about my relative walk in the park

Second-I feel part of the reason I am doing well is because of the advice I was given from these very same people.  Not that I am fooling myself that I have any control in this journey-in fact my worst sx are things I cannot control-anemia and neutropenia.  And I know that just because these first 9 weeks have been kind..that can change in a moment.

Third-I know that hearing balanced information is important-but look at me.  Minimal liver damage (1/0) in a clinical trial with all the risks/rewards that carries and having a relatively easy time of it. I struggle with sharing my experience because I don't want to lead anyone down this path and have it turn out bad for them.  

So, I guess in a round about way-that is my way of asking you if you think I should share the my perspective more as well or if it would somehow be misleading???
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412873 tn?1329178055
Apparently I am not doing as good as I thought.  My neighbor just "popped in" and she kept saying she was sorry to have woken me up....I finally had to tell her I wasn't sleeping...I just look like this...LOL!
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577132 tn?1314270126
I think it's very important to share how things are going for each person, the good, the bad and the ugly because we need to show a well rounded picture of treatment for all those considering it.  

I know of many people who refuse to treat as they have heard that tx is worse than the illness.  In some cases it is, in some cases it's not.  There is also an stereotype out there that these types of forums and support groups are filled with negativity which is also detrimental to those who might be trying to decide whether to treat or not as there is so much good information here that can actually help the treatment experience for the better.

Personally, I have good days and bad days, some are horrific, some are ok.  I manage to keep working mostly.  I also tend not to share when I'm feeling good, I also minimize what I am feeling because I compare it to what others are experiencing and I think that negatively impacts on my treatment because it's not about who has the worst or most difficult sx, it is relative for each individual and part of getting through this is accepting where we are with it.  We already feel bad, why feel bad about feeling OK?!

I also believe in the power of the mind and how we can influence our experience by keeping a positive and open mind.  Sometimes too much fear makes us paralyzed and let's face it, our perceptions can get pretty messed up with these drugs without adding more fear to the picture.

I'm not saying we should be Pollyanna about it all, I believe in a multifaceted knowledge base, but I also think we need to celebrate the good days to tide us over the difficult days.

I look forward to hearing some positive experiences!!
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412873 tn?1329178055
Very well said :-)
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217229 tn?1192766004
Jim - I think that each person responds to the medication differently.

There will be about 70% of the folks who have the (and I quote) "FLU" symptoms.... and nothing much more.

Then about 20% who have a rough time...

And about 5% who have a seriously rough road... and tough it out - thinking this is normal...

And about 4.999999% who must quit.

And about .00001 who die.

I pulled those stats outta my monkey suit trap door *grin*... But that's kind of the idea that I'm working with --- those basic percentages... From the literature that I've read - from the doctors I've talked to --- and from watching the boards --- reading the net and listening to the people here who have or are treating.

So I count myself in the 5% range... And I think that is too small of a number to "warn" people about.

I do tell them that each person is affected differently.

And I am of the belief that the only peeps who pop up on the board are usually those who are having problems or have some questions --- or are doing research ahead of time.

I just want to go on record - folks who do 72 weeks are my heroes --- and those who did 72 weeks and were in MY (LOL) 5% range --- are super heroes...

No one's TX is any less hard than anyone else's...

ALL TX stinks... But I got SVR...

And there is nothing that can measure that pure luck. And I WISH everyone to get SVR --- and I'm feeling hopeful about the new Vertex and other drugs on the pipeline...

There is a LOT of HOPE coming out - and I'm very thankful that it's starting to look good on the horizon for a lot of people and the NON responders.

Hugs youse guys --- Remember that every single one of you is special...

At least to me. No matter our differences --- no matter our different opinions - each one of you on this board is a special - fantastic person.

Many hugs!

Meki
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412873 tn?1329178055
This is why I am reduced to putting my mascara on using the rearview mirror in the car....

everytime you hit it out of the ballpark with words of wisdom, I print it out and tape it to my bathroom mirror.

At least that is how it started......

now my bathroom is wallpapered-mirror and all--with Meki's words of wisdom!

LOL!

So glad you are back.

Isobella
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443974 tn?1224592928
Thanks for the "message" Marcia, again I cannot write back!! Tried 3 times. This is driving me crazy, still says I am blocking,can't send notes, messages, nothing but post here Tried everything!  No luck with who ever runs this site either. Sorry for the off topic just wanted to let everyone know, who has written me I am not ignoring you, just can't respond.


Anyway Marcia I appreciate your note and thoughts and I understand.  

I am routing for you and us all.  I think a drop in VL no matter what is a huge accomplishment.  We should take every drop, embrace it and never let go of hope!
Keeping positive is the key and remembering we are all not cut from the same cloth or geno type!  As others have said. Each journey will be different,some easier than others,some unbearable, none of us know till the journey begins!  It takes courage to start, our bodies will do the rest to let us know if we can continue or not. It is a very personal choice which should be made with "good""reliable" medical supervision. As  we all know finding that can be more challenging than the tx LOL!

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443974 tn?1224592928
As many said no matter what differences, being here for eachother is major.  "Out there" in the world I often have to hide my feelings with a smile, when I feel like *&^% and just want to crawl in bed and hide under the covers,  and worse even lie in certain situations, and I hate that!  But some days I feel so good I forget I have it! When I come here, I seek the comfort and support we all most desperately need and many of us don't get in the real world.  

I get my 12 week VL this week and as I said I am scared to death of the results because of the lower dose, which some thought I should not do, but I didn't have a choice,I will just have to deal with the results.
  I hope I have good news to share, and hope I keep hearing good news from everyone here on this wild journey we share!  I believe in the end it will make us  stronger. And I would imagine those who have finished the journey and are SVR and have their lives back would agree! And they appreciate each good day just that much more than before tx. Just my opinion.

Hang in there gang!
Thanks again Marcia.
D.T
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412873 tn?1329178055
Can't wait to hear your good news this week :-)

Keep us posted-

Isobella
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