Aa
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.
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
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
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.
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.
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
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
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
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
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
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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