Lonestar seeks weapons. ; ]

[Lonestar823]

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.

[Deb_c430]

I am on infergen now,  and I can't believe some of this.  Yes the anemia is a lot worse on Infergen I think, I have done pegasysus  and old inteferon.   Fighting the anemia is my constant battle!  

Said that tho it is a known side of all  ribas,  intefereons, My GI just said if I am und in April I can plan on 72 weeks of fighting of it.

She could take a break?  hmmm ....

Sure someone has some studies,   Not many of us here on infergen.  

Deb

[Deb_c430]

pulled some out fo ryou

http://consensus.nih.gov/1997/1997HepatitisC105PDF.pdf


http://www.
medscape.com/viewarticle/547344

http://www.

natap.org/2005/AASLD/aasld_46.htm

Not sure if urls will work, if not let me know i will private message them to you

[Lonestar823]

Thank you Deb.  Yes, they work but I'm just now home and haven't read them yet.  I still don't know what to do.  I'm horrified but she's so comfortable with her treatment plan I kinda feel like I should back off.  This just seems so crazy to me.  My very best to you too.  I hadn't realized you were doing the long haul with Infergen.  It's quite a battle isn't it?  I did it too.  

[wyntre9]

Tonight is shot night for me and my HgB is at 10 so i'm very weak but tomorrow I will send you some of the links others have sent me.

Where in upstate NY?  that's where I am, too.

[zazza]

SCREAM! Take a break from the drugs! What kind of doctor is that?!!

This is really a tough one - whether to realize you are powerless or to fight...

I am really feeling for you and your friend.

[IAmTheWalrus]

Sounds like not good medical advice from everything I read. I got stuck overnight tonight in Little Rock and won't get home tonight for my usual Friday night shot and I am worried about the effects of delaying it a day! Somewhere between my paranoia and your friend's doc's laid back attitude should be the truth. I'm siding with a little constructive paranoia.

[Lady Lauri]

Hi, glad to see you up and going back out there in life!

DON'T 'back off' at all! This is CRAZY for a Dr. to tell her to take a break from the meds!!
Or not extend not reaching UND until 24 wks. Even I -a 2b- know all that! Does she understand (really!) that you have LOTS of research in this, you, others here , to prove this moron Dr. wrong? Can you tell her you posted this and we are all screaming NO!?
God, it just kill's me when idiot Dr.'s do these things! What 'study' is this guy following??
Dealing with idiot Dr.'s with my brother-in-law....it is soooo frustrating. I feel for you, not being able to get thru to her. I say keep trying, even if she gets angry at you right now!
I also can't believe she wouldn't have researched all that, but some just go along with their 'Dr.s', sadly!
  Maybe get her not to skip any until she reads all the info. your gathering for her.
Good luck on this.

Walrus..... my very good Doc :) said it's okay to fluctuate a shot within a 12-24 hr. range. Don't worry too much on that.

LL

[Lonestar823]

Jeez, it's good to hear your voices Wyntre & Zaz.  It's amazing that either one of you are able to rally and respond.  I know first hand how "far away" you both feel this deep into treatment.  I was so out there even my voice seemed too small to even bother using it..  It was like no one would hear me anyway.  Thank you both for responding.  It's been 48 hours since I got the email from my friend and I'm still shaking when I think about it.  She's in the Albany area Wyn.  Wish I wasn't so deadly serious about this.  It's not healthy.  I'm wound way too tight anyway.  I have good reason.  When I was fourteen I met a young man I would love for the rest of my days.  He was too old at that time to be my boyfriend but we stayed in contact for over thirty years.  He came from a family of portrait artists.  He loved to paint.  He loved words.  He was a writer.  He was witty, charming and so very dear.  He left for Viet Nam when I was still a child.  He came home a junkie and stayed a junkie until he died of hep c related illness.  I cared for him in his home alone for the last six weeks of his life.  I never shared this story with my friend in Albany.  She has struggled so hard to beat this.  She has a lovely family and everything to live for.  Maybe I should tell her.  I'm not sure.  It would be wonderful Wyn if you are able to gather more information for me.  My very best to both of you.  You are mighty little warriors.

[Lonestar823]

Hope you made it home okay and I think Lady L is right.  You should be okay Walrus.  Where'd you come up with that name anyway? ; ]  Oh, I know.  It was an old Beatles song, right?  Get home safely and get those meds into you Mr. Constructive Paranoia.  I'm with you!

[Lonestar823]

Thanks LL.  It's not even six in the morning here yet and I'm up, got my coffee made and watching pieces of light peek through my trees from the east.  I'm worried about my friend but something about your post has pasted a smile on my face this early morning.  Jeez, I thought I was wound too tight! ; ]  
It's too late to talk to her about the break in meds.  That's why she sounded so wonderful in her email.  She had been off them with her doctor's approval for the whole length of her holiday!  I just hate to see her lose her chance at svr after everything she's gone through already.  48 weeks doesn't seem long enough for such a late clearing of the virus.  Here's what pasted the smile on my face.  If I fight for her to extend and if I lose, are you the girl that has a big Harley Davidson?  If you are, that motorcycle combined with your response could be the weapons I seek.  Will you roar into Boston and beat up my friend's doctor? ; ]

[wyntre9]

I'm gonna email you with my number. give it to your friend and tell her to call me.  I'm half an hour from Albany.  i have found a gastro up here for follow-up after i finish this TX and he may have suggestions as to who your friend might consult with at Albamy University mediacal Center.  Also, tone of the major studies about hepc was conducted at afacility in Albany - i think it was the Drusano study - and I would have her contact them as well.

i just got up so after coffee and churning back to motion I'll check through my files for the studies.

In the meantime, Tell her to CALL me!!!!!  NP!!!!!

Gonna email you now.

wynhe

[wyntre9]

You've got mail.

wyn

[zazza]

How much pain have we not all had to endure in our lives. I figure each generation has their battles to fight. Drugs and hep C and the Vietnam war are some of the burdens put on our generation. I lived in the US during the early 70's and remember the fear the young men had whether they were the next ones to be sent out to war. How awful it must have been for you to see what the war did to your friend. I resorted to drugs without the additional burden he had to carry. No wonder he could not say no to drugs. And then for him to have to pay with his life...

Lonestar is such a good name. I think that is what life has done to many of us. At least now we can hold out our hands to each other. We are not alone anymore. And I see your star shining brightly against all odds.

Zazza

[Wassup]

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

[ladywhy]

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

Lonstar: You have mail!

[Deb_c430]

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

[Lady Lauri]

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

[Myown]

Unbelieveable.

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

[Lonestar823]

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

[Deb_c430]

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

[ladywhy]

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

[Myown]

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

[Lady Lauri]

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

[ladywhy]

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.