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Avatar universal

Lonestar seeks weapons. ; ]


Hello everyone.  Just checking in on you all here.  I see some good news and some sad news.  I'm sorry LadyE.  There are a few of us here who have treated with infergen and went on to SVR.  
I'm here to gather some information.  Information that I had on my computer for a couple years.  After achieving svr I went through a housecleaning spell and deleted everything pertaining to Hep C from my computer.
I have a friend in upstate NY who has hep C.   She tried off and on for a couple years to treat but never became undetected.  Finally I urged her to try the Infergen and it worked but slowly.  She didn't become undetected until week 24.  I'm a kinda deadly serious type when it comes to this disease and I have invested much time and emotional support to this friend helping her stick with treatment.  Out of the blue the other day she sent me email telling me her doctor who is in Boston disagrees with me on the length of time my friend should treat because of her anemia.  I think we all have had the anemic experience. ; ]  He told her 48 weeks would do it.  She sent her email from Florida where she is on holiday.  She said she felt so well because her doctor had also told her she could take a break from all meds while she was away.  I wanted to throw up.  Can someone please repost some of the studies on length of treatment?  She is 1A Grade 3/Stage 3.  She is very happy with her doctor and trusts him completely.  I don't know whether to run as fast as I can or stand and fight for her life.  I'm in shock.
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131817 tn?1209529311
Yes, it has perplexed me all week!  I have told this story to my shrink, my husband and gone over the problem over and over. I didn't know what "guess and check" was, so he didn't trust me. He has had numerous tutors, so perhaps me not understanding his math right off the bat made him not trust. After a lot of thought, I decided to approach this from a different way. I am doing testing on him, then we work on homework. After the testing, I showed him this problem again. I told him over and over the answer had to be within 9 and 11, he wouldn't listen before. This time I didn't tell him he was wrong, just asked questions. What's wrong with this rectangle that is 9 x 11?  He answered it was a 2 cm difference! YEAH!   I just watched 60 minutes. Sleep helps our memory. Perhaps after sleep and several days, he began to see the light!  Things were much better today...it seemed like he believed my directions. It is SO much better dealing with one kid, rather than 30. I felt so inept trying to teach over 30 kids with different learning styles. This is challenging, but so much more managable.  

Thanks for your comments!  

Linda
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Avatar universal
How can we tell people they are WRONG?  
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It sounds like he has a problem with authority figures AND math. I would say that he first has to acknowledge who you are and that you are there to "help him" so he should or needs to listen to you - period. I am out of touch with kids today, so when I hear things like this, I just don't get it. It was so differnent when we that age. We had respect for the teacher. I don't know if it's the parents fault today in letting their kids get away with things or what, but something is wrong.

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Avatar universal
I was thinking this morning about your post L.  I don't think it's possible to open a closed mind without setting example as proof.  Even then, we often fail.  Maybe the way to set example with this particular 12 year old is to set example as a game, a competition.  You both solve the problem together but separately.  If the competition with a pretty young tutor doesn't do the trick I s'pose he's really not in the market for your tutoring.  Tell his parents you "guess" he's not ready. ; ]
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131817 tn?1209529311
I have read some, but not all of the posts. I am just so angry and reacting, not sure how to respond.  All I can do is give a story about a young boy I am working with now.

I met with a 12 y/o boy to tutor and test him in Woodcock Johnson tests, which test intellegence and abilities. We began to do math problems on his homework. He had a problem of a 40 inch perimeter of a rectangle. One side was one cm less than the other. What are the sides?  I tried and tried to tell him he needed to have his two sides close to each other. He wouldn't listen. He continued doing this guess and check chart....He got to 14 something times 6 something and it made it 40. He was so pleased! Of course this was the wrong guess and answer...but I could NOT convince him to stop his 14+ guesses.  How do we convince people of anything?  What is really disturbing to me, is that even a 12 y/o wouldn't trust me to try close numerals, or look at the rectangle. How can we tell people they are WRONG?  
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Avatar universal
Well first off, I am glad you are not mad at me. I didn't think you would be, but part of me feared there was a possibility cause of your name "lonestar."(*smile*)..I know that sometimes people who chose to stand off to the side and look in for a long time, before actually joining in, might be a little shy and sometimes get hurt a little easier....Though maybe thats not always true cause no one can be put in a mold cause I am not a loner, but, "at times I am" and sometimes I can take alot and other days I can't hear anything that might sound negative come at me,,,I don't stay mad at anyone forever, but sometimes it takes time for me to forgive if I want to be totally honest,,,,though many Christians would think that is such a terrible thing, but I think "dishonesty" is a terrribe thing and just because I don't have "instant forgiveness" as some might claim to have, admitting my weakness to myself and God is a good step in the right direction...So anyhow I am glad you didn't get mad at me in any way and saw my intent instead.

I know you are one sharp cookie - I've been around and I know a sharp cookie when I meet one and I also know we all deal with things differently and I was hoping that you were going to continue in whatever you needed to do to get your friend to listen... If you have 3 way calling, just let me know if ya need another voice. I will be gentle but firm,,,,,but I know you can handle it on your own, but just wanted you to know that I will do that for you if you wanted back up. You can email or call me if thats the case.

I could and do cry at times at the way so many fall thru the cracks with this disease at the hands of doctors that should not be treating Hepc. I not only blame your friends doctor and doctors like him, but I also blame the big liver heads for not somehow having the AMA only allow doctors who specialize in Hepc treat this disease. I am going to mention this case when I see my Hepatologist - just to plant a seed in his thoughts if nothing else. I'm sure he has heard of things like what has happened to your friend, but I want to drive the point home. "Driving the point home" is what I specialize in :) *smile*..I know I have read he thinks its important for a person to go to someone who treats alot of hepc patients,,,,but I will make my point that just saying that in an article is not enough -these inept doctors need to be stopped from txing hepc. There should be a test that they should take if they are to treat this deadly disease.

I mean really would we have a Neuologist perform surgery on a persons brain - don't they use Neurosurgeons? Its not just a regular Neurologist, right? I don't really know, but I would guess it would be a Neurosurgeon,,,,so because a Neurologist can't perform brain surgeries (or at least I don't think he can), why should a GI doc be able to treat Hepc if HE doesn't specialize in it.....Well the answer is IMO,,,the mistake that a Neurologist would make by operating on someone would be seen IMMEDIATELY - the person would die right then ON THE OPERATING TABLE,,,but the mistake the GI doc makes thats not knowledgeable about hepc and cuts riba down instead of giving helper drugs or not giving weight based  or doing a 48 week tx when it should be 72  or tells someone like your friend to take a vacation from tx etc,,,,their death causing mistake doesn't happen right then and there,,,,BUT that doesn't mean that they are not causing someones death, just as the doctor who is not qualified to operate yet operates - except our death is a delayed death when mistakes happen and this is why these doctors that ARE NOT QUALIFIED to tx hepatitus C yet they get away with txing patients and they will continue to get away with it cause it would be hard to prove..... Just as this is disease is called "The Silent Killer," well, the mistakes these doctors make are "Silent Mistakes" cause just as the 'disease' can go on unnoticed for years, so can the 'mistakes' doctors make go unnoticed for years,,,,it takes a while before the mistake catches up and causes someones death........It is ashame and I am telling you,,,,all this stuff will probably pull me 'out of the closet and onto the streets' someday,,,cause it is really getting to me. I am tired of it - seeing people suffer at the hands of these so called doctors AND whats worse is those patients that have a smile on their face (like your friend) cause they think they are in good hands,, Get's me crazy!

Well that's it. I am on my soap box as usual and its time for me to get some things done....You are very special to me and I hope you know that. ,,,"You can tell a person by the friends they have" (or however it goes) Well, if my friends make up for where I fail in life - if that saying holds any weight, I am glad that its 'who' my friends are that helps my image in some way cause that would mean I am doing pretty good. Thanks for being my friend - you have upped my rating:)

Have a nice weekend. Say hi to David Niven.*smile*
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Avatar universal
To: MyOwn
That was well said...and I know it was hard for you to say...well done, faithful friend. I advise you to copy and paste and send it to LS's other address as well...b/c she may not be on here for awhile.
Good intentions,
y
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Thanks Yvonne, I was hoping that it would not be misunderstood because I know how we all can so easily misunderstand one another sometimes due to 'seeing' it and not 'hearing it.'

I'm so sorry to hear that you didn't become UND yet, but 15 is not really any different than 14, right? So at least it didn't go up so to speak. Back way when I thought your doctor might be holding on too long,,,but after I thought about it,,some people doc's would stop them and then the virus goes up into the millions and just to start all over in a few weeks or so? Doesn't make sense. I can understand a doc stopping and waiting for new drugs, but I never understood stopping and starting again in 3 weeks - for what? Rest the body? A body can't exactly replenish itself in 3 weeks. I am with you - whatever you and your doc decides. Maybe you should mention injections every 5 or 6 days instead. CS would be the one to talk to. He had shown me something and I know I bookmarked it, but to find it is another thing:) But anyhow, maybe you can PM CS and talk to him about it - he knows alot about all these studies...but maybe thats the key for you - closer injections - maybe just for a while and then weekly again. You know your in my prayers and will continue to be.
Try not to worry. I know its so hard, I'm tired of worrying too.
MO

LadyL,
I'm sorry to hear what you are going thru with your sister. That has to be hard. My mother has cancer too - breast and bone. She has a great attitude - doesn't worry one bit, but the bone pain lately is a little tough. It has gotten bad the last few days, she is not one to complain about pain so when she says its painful, I know it must hurt alot.

The stress of a family member being sick at the same time we have our stuff, is not easy, I know you know that,,but hearing your sister has cancer is sad cause she is young. Well any age having cancer is crumby, but I hate to hear young people being sick. I thought my family was the only family that never had a member get cancer cause almost everyone I know has a family member that has cancer and we didn't,,so I was surprised when it hit my family.

I hope your sister gets well and I wish you the best with SVR.
Have a nice weekend,
MO
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Avatar universal
Dearest Y,  Don't lose faith.  Remember when I used to get so upset over your treatment plan?  You had faith and I didn't.  I wanted you to switch to Infergen.  You considered it but your doctor chose to have you start the double dosing.  I'm not so sure Infergen would have been a more powerful weapon than double dosing the Peg.  Though your doctor's plan seems odd and unusual to me you are the closest you've ever been to "undetected"  Please let us know what happens Monday soon as you can, okay?  Remember Tallahassee who did 99 plus weeks and is now SVR?  If you must do something like that and your doctor permits, you'll do it.  I know you will.
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Avatar universal
Of course you are absolutely right Captain My Own. ;]   Of course I know my calm is born of outrage and fear. It's only how I battle. It's the only way I know in order to achieve the best odds for victory. Think about what you know of me and you and Y probably know more of me than others here since we have shared many of our thoughts and feelings through private letters. I've stated here before, my voice is small. My vocal chords don't carry the weight, the confidence and strength like yours, New York Girl's or Lady Laurie's and others. Remember how long it took me to even post here? You and Y kinda dragged the words out of me after reading here for more than two years. Just remember and have faith that though I often appear quiet, my brain is never still. It's ticks and tocks and strategizes at simmer until it's time to turn up the heat.
Would I love to hit my friend's doctor over the head with a 2x4? Ooooh yeah. Her’s too? Yup. My life experiences though have taught me a different way to battle. Remember I'm the one who was born into a large family of seven big strapping brothers, a dominant mother, absence of father due to death at a young age. In order to survive this family of big, booming and commanding voices, I discovered my strength in quiet, calm fortitude. I'm not smart enough to give up. It's how I made it through 73 weeks of this horrific Infergen treatment. I breathe slowly; I don't waste my energy on rage or fear. I can't afford to because I think if I ever started to cry I'd choke to death on my tears, so I just breathe easy and never give up. I promise you I will never give up on my friend My Own. I don't know what she will do at this point. I treat her gently but I am persistent. I'm kinda like those little splinters we get that we can't see but always feel. ;] Don't worry I would ever be angry with you. You were one of my first friends here. Your Joan of Arc rages delight me and often enlighten. I wish God had built me more like you.
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250084 tn?1303307435
and oh yeah, post on that! You know all the 'brains' here.

LL
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250084 tn?1303307435
D*m !  Sorry!

If you have yet to be UND....and I am sure I have read about this thru the mths., BUT-duh.....why are you in week 52 with no UND yet, still treating? I don't understand?
And are you double dosing Peg (2 x a week?) thru Dr. or was it you that's doing it on your own? That's a LOT of these drugs, how are you writing, standing??

LL
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212705 tn?1221620650
52 weeks....last PCR it was 14...I have yet to see UND. and I have been double dosing Peg and taking 400 extra mg. of Riba since 25th week. It's so frustrating and so hard.
Thank you for your prayers...so appreciated.
Yvonne
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212705 tn?1221620650
52 weeks....last PCR it was 14...I have yet to see UND. and I have been double dosing Peg and taking 400 extra mg. of Riba since 25th week. It's so frustrating and so hard.
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250084 tn?1303307435
OH NOOOOOOOOOOOOOOO ! WHAT??

What week are you in? (sorry, I should know!) This could be a mistake? It's so low tho.  God I hope it's not right.
I'm sorry :( Of course your having a hard time with your thoughts! Did you post this? Please do, get some opinions.

Cheer up and hope for a mistake. It has to be!

Prayers, wishes, 'mistake' vibes your way!!

LL
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212705 tn?1221620650
That was well said...and I know it was hard for you to say...well done, faithful friend. I advise you to copy and paste and send it to LS's other address as well...b/c she may not be on here for awhile.
Good intentions,
y

I am having trouble tonite getting out my thoughts...more so than usual. MO, I got PCR results... :{  vl of 15!!!  :[  :[  :{
I  have to be ready at 8:00am Monday...I may be able to get in to see Dr. NP will be calling @ 8:00 rather than waiting for the 24th...I am very disheartened. I spoke to her after 5:00pm today.
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250084 tn?1303307435
I come and I go, to and fro because here lives comfort and friendship.  This I know.......

That was nice, may be quoting that!  :)


Myown...how'd you get all that out! I do agree on that's insane! Pretty much her tx (after already treating and failing!!!!) is a wash at this point....stopping the meds, not extending, it's like a huge waste of her suffering and time! I also agree the idiot Dr. needs to be called out on it, made aware of his BAD judgement!

While it has me riled up also.....and idiot Dr.'s really bother me when I see post on them, I do know that there is a few things I have tried to get thru to my sister, fighting cancer 8 yrs., and that sometimes you just can't get thru! We're very close and
it can be very frustrating! I can almost see her 'shut down' when I try to make certain points. Hopefully, she'll get it, sadly probably when she is told it's still there.

LL
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Avatar universal
Hi,
Ya know what, sending her the study was a good start, but as you said, she will probably not be able to absorb it. She has treated a few times, now after your good advice went on Infergen, did reach UND at 24 weeks and NOW after reaching that, this idiot doctor takes her OFF MEDS and on top of it he thinks that she only needs to do 48 weeks!!!! I mean really, think about it - that is beyond nuts and this man should lose his license for this as far as I am concerned. My God she was up to 30 weeks or so and NOW that is all wasted, gone down the tubes,,,,yet in his mind putting her back on tx until week 48 will do the trick in his eyes??!!!!! This is total insanity!!

The shock that you felt when you first heard this from her was the way anyone would feel that has gone thru tx and especially you cause she is your friend and being you did the INfergen, you know how tough of a tx it is and NOW THIS MAN JUST DID THIS HORRIFIC THING!!!! Forget about this "wai" thing. This is more of a "war" thing that you should be doing.

Lonestar, whenever we are traumatized we initially go into a shock and we sometimes experience anger/fear or rage - and you mentioned you were 'shocked. Usually within days, the shock causes us to feel almost numb to what is going on or the situation I should say. I think the 'calmness' that you speak of is really the 'numbness' from the trauma of hearing the doc pulled your friend off tx -especially knowing she worked so hard to become und and finally did and now all for what??  My God!! This is really a horrible situation you friend is in!!!

Lonestar, as a friend offering some advice,,,I don't think you really have a choice as her friend other than to call her up and ask her if she understood the study and IF she did , she knows she needs to see a new doctor soon. If that doesn't work and she still wants to stay with this doc, I would go to her house and shake her by the shoulders and plead with her to listen. She is 3/3,,,,she needs to get working on this disease,,,,she may have licked this thing but this doctor did this and now her 30 weeks were in vain!! I can't believe it. The other day when I answered you I made my point and was brief, but it bothered me that I didn't tell you exactly how I felt cause I feel now after reading your repsonse you are numb and need someone to shake you by the shoulders too. So I am shaking you..but in love, not anger. We don't always agree with someones tx plan on forum,,,but at least we know the people here know the facts and its their decision.....You said your friend will now have to do whats best for her. How can she? She doesn't have a clue (obviously) to do whats best for her.

If you are afraid of losing her as a friend by insisting she sees another doc and btw, she can go to Dr. A - since she already goes to a Boston doc - Dr. A should know what this doc is doing to patients - maybe he will call him....But anyway, if she gets mad at you and doesn't want to be your friend anymore, in time I believe your friendship will be restored - if you truly do care for one another. My best friend and I had a falling out early on in our friendship but our lives felt empty without each other, we made up and are best friends now for over 30 years - tighter than tight and never ever had another argument,,,so sometimes if things go bad - the restoration makes things better than what they were before cause you don't take the friendship for granted anymore as she and I did.

So anyhow, I hope you are not mad at me for saying all of this, but you really should consider what I said and go grab your friend by the hand and take her to Dr. A in Boston.

take care.
MO



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212705 tn?1221620650
If you would just slow down a bit (quite), I believe there an incredible author waiting for an opportunity to pen a 'classic.'
I'm not kidding...whatever you write is so poignant and real and sometimes otherworldly and often hauntingly beautilful (enough adjectives!! :), you're incredible. Do it jus' fer me....
;)

....and a Wai backatcha.........my dear.

Love & Hugs & Your Health

and  Happy St. Paddy's Month!!!!

y



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Avatar universal
So beautiful, I return your Wai.  to you.
You show yourself, to be a worthy and good friend.   Your kindness is humbling.

Thank you

Deb
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Avatar universal


Some time ago I had the pleasure of hosting a young university student from Thailand for a few weeks.  I learned many things from her but my most favorite was the Thai tradition of the "wai" as greeting.  The hands are placed together as in prayer and raised upwards towards the face while the head is lowered in slight bow.  That's how I feel when I enter the forum.  I'm a lot calmer the last few days.  Wyntre mustered the strength to copy and paste the whole Drusano/Berg study for me.  I struggle looking at that report still, and I've been off treatment for a year and a half.  I've forwarded a simple version of all Wyn sent me on to my friend and asked her to share it with her doctor.  I'm not sure my friend is any better able to absorb some of that information than I am.  She's into her thirties weeks with the daily infergen.  I sent it along with a letter written from "calm" not crazy, scared, intense, the way I felt when I first learned about her doctor's treatment plan.  So, Lady Laurie, I guess you can turn off your motorcycle and put it back in the garage for now. ; ]
I'm going to take Deb's advice and trust that my friend will do what is best for herself and her family.  Wyn gave her the Drusano study as weapon should she choose to use it.  At least she is armed.  
A deep "wai" for Wyn, Deb, Child Angel, LL, My dear Y and My dear MyOwn.  And how about that post Zazza made?  Whew, it made me cry. It was so beautiful Zazza and so true.  I come and I go, to and fro because here lives comfort and friendship.  This I know.

Lonestar
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Avatar universal
Unbelieveable.

If he was an Oncologist, I guess he would tell his cancer patient that she could stop the chemo while on vacation?:)


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250084 tn?1303307435
LOL, LOL! Absolutely (did ya see the post of my 128 lb arse up in a 300lb (at least!) guys face at 1 AM while on tx, for hurting my son:)

And I can bring friends too :)

The FIRST thing my sister said to me when we found out her MORON Dr. had dismissed her symptoms as 'hemorrhoids' and a year later we'd found it was stage 4 colon cancer was......."PROMISE me you will not go there or do ANYTHING yet! You have to PROMISE me!" She knows me :)

I can not deal with Dr.s making huge, life threatening mistakes on people, let alone always just getting away with it! I’m not finished with mine that missed this Hep c for 10 years there!

Hope you get thru to her, really! Too bad she already missed the dose’s…what a mistake! Ya' got me riled up again ! :)

LL
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Avatar universal
zazza. what a wonderful post,  life and how it can change us.
I think they have it so much worse today.  Sad...

Lonestar, sometimes you just have to let things go.  Pass on the the info and let our friends family make the decision for their selves.

Maybe she is just tired of txing and wants to enjoy her holiday.  Deal with it all later. Who knows?

Take care and hoping you are ok and that you
have found a little peace.

Deb
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212705 tn?1221620650
Zazza: Wow, what a synopsis...sad...yet lovely. How are you holding up w/thyroid situation.?

Lonstar: You have mail!
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406107 tn?1219012600
I posted to jmjm on the post by Tigerspaw, Re: starting tx, choices, Dr's , (know it alls ). G'nite Hugs, Y'all, Ant B
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