Aa
my war is almost over
i went in for my end of treatment tests and gave 4 vials for 4 pcrs (the most sensitive
one down to 2) at $530 each and what did they do? they only tested one!!!!!
all of HR's work goes down the drain because they get confused
when you try to do serial (multiple) samples. i guess all of us who want extra sensitivity can forget it. they cant figure out how to fill out the paperwork.
"update" they just called me, and it took them two days to find the other frozen samples that i gave and can finally run them.
so that will take another forever to get the results. what makes me mad is that
i knew they would screw all this up and warned them and they still dropped the ball!!!!
in any case heres my update,
3 weeks ago i technically reached eot as i finished week 59. this gives me 40 weeks of undetectable time.
i wanted to go a total of 72 but my thyroid was quitting and i dont want to lose it. the synthroid
the doc gave me is working properly already and my tsh is back in range at 3.8. the doc said for cases like mine he suggests to stay on the sythroid for one or two years and then discontinue. he says most people regain full thyroid function after that. he also said that the synthroid is a very benign drug with little or no problems and very safe to use.
even though i didnt clear until week 19, i did over dose riba for most of the treatment and am hoping i can svr with only 59 weeks of full treatment. ("only 59 weeks" what an oxymoron!!!)
right now im halfway through a 7 week taper off which has me at half dose. once finished this will give me 66 weeks total. im already feeling much better but my hemo at eot (3 weeks ago) was 9.4 and i expect it to take a while before it rebounds. i am still very weak. the reduction in riba has immediately and dramatically lessened the suffering though.
i actually want to do things again and have been out doing yard work and riding my little motocross track ( i can go 2 whole minutes!!).
my one eot pcr that they they did process came back "und" to less than 2 iu/
so thats good. i expect the other 3 vials to be und as well. these 4 tests are at least 25
times more sensitive than a heptimax. if i get this und result for the other 3 vials i will feel safer about getting svr. i would have done 10 vials but i already decided that im quitting now no matter what the result and that would have been a flagrant waste of insurance money.
in any case, most of my war is over and it feels great. all i need now is a little luck from the great god of svr and maybe i wont have to do this again one day. i owe yall a lot for helping me through this wicked and prolonged war, i dont know how to repay you except to say thanks.
thanks, i really appreciate it gang.
the worst is over and i may be a foot shorter and half the weight i used to be but mentally i feel like a 200 foot tall invincible beast. another toast for all the brave and dignified ranks of invincible warriors. nothing can take us down.
se yall later, im going to jump in a lake!
one down to 2) at $530 each and what did they do? they only tested one!!!!!
all of HR's work goes down the drain because they get confused
when you try to do serial (multiple) samples. i guess all of us who want extra sensitivity can forget it. they cant figure out how to fill out the paperwork.
"update" they just called me, and it took them two days to find the other frozen samples that i gave and can finally run them.
so that will take another forever to get the results. what makes me mad is that
i knew they would screw all this up and warned them and they still dropped the ball!!!!
in any case heres my update,
3 weeks ago i technically reached eot as i finished week 59. this gives me 40 weeks of undetectable time.
i wanted to go a total of 72 but my thyroid was quitting and i dont want to lose it. the synthroid
the doc gave me is working properly already and my tsh is back in range at 3.8. the doc said for cases like mine he suggests to stay on the sythroid for one or two years and then discontinue. he says most people regain full thyroid function after that. he also said that the synthroid is a very benign drug with little or no problems and very safe to use.
even though i didnt clear until week 19, i did over dose riba for most of the treatment and am hoping i can svr with only 59 weeks of full treatment. ("only 59 weeks" what an oxymoron!!!)
right now im halfway through a 7 week taper off which has me at half dose. once finished this will give me 66 weeks total. im already feeling much better but my hemo at eot (3 weeks ago) was 9.4 and i expect it to take a while before it rebounds. i am still very weak. the reduction in riba has immediately and dramatically lessened the suffering though.
i actually want to do things again and have been out doing yard work and riding my little motocross track ( i can go 2 whole minutes!!).
my one eot pcr that they they did process came back "und" to less than 2 iu/
so thats good. i expect the other 3 vials to be und as well. these 4 tests are at least 25
times more sensitive than a heptimax. if i get this und result for the other 3 vials i will feel safer about getting svr. i would have done 10 vials but i already decided that im quitting now no matter what the result and that would have been a flagrant waste of insurance money.
in any case, most of my war is over and it feels great. all i need now is a little luck from the great god of svr and maybe i wont have to do this again one day. i owe yall a lot for helping me through this wicked and prolonged war, i dont know how to repay you except to say thanks.
thanks, i really appreciate it gang.
the worst is over and i may be a foot shorter and half the weight i used to be but mentally i feel like a 200 foot tall invincible beast. another toast for all the brave and dignified ranks of invincible warriors. nothing can take us down.
se yall later, im going to jump in a lake!
So you went 59 weeks? Wow. Kalio had the same situation, as she relapsed after doing 24 as is SOC. Glad you got the great info and are following it. I am sure you are going to SVR after all this!!!! Good for you! Wish I had had the chance to extend, I bet I would have made it too. With knowledge is power...and you have the knowledge and used it. Good for you!
Linda
Linda
What a tribute to so many...
Thank You for your support and high compliments..though I don't deserve them.
It gave me a warm fuzzy and tonite it was needed.
Sincerely
y
Hugs!
Thank You for your support and high compliments..though I don't deserve them.
It gave me a warm fuzzy and tonite it was needed.
Sincerely
y
Hugs!
charm
thanks for the praise, you are sure setting a good example all the way around.
dont stop.
myown
even though i really appreciate your concern, dont worry about my outcome,
ive got this thing whooped!!!! (a few extra prayers never hurts though, thanks!)
child 24
i havent had a chance to commiserate with you about the latest news with nick.
it certainly can be a cruel world and you and nick are getting more than your
share of it. in my book, god only gives the harshest fates to the most capable
fighters and believers in hope. you guys are at the top of the charts in that regard.
take it as a compliment. i do believe 100% that you
and nick are in a point in medical progress where he can fully become whole again
like new. it may drag out for 10 years but i think youre teamwork is invincible
and some new medicines and maybe a transplant will fix everything eventually.
the support you give others around here is great. keep it up
ladywhy
the female warlord, i love your spirit. at least i can be comfortable that nothing will stop you from winning your war. and i mean nothing. you might deserve the award for
the most obstinate fighter and this my friend is a high compliment. keep the
support flowing around here, its much appreciated and keep on fighting
(i agree back off thre riba some.)
geterdone
the wisest and most poetic and scientific redneck ive ever seen in my life.
and im sure im leaving a bunch of stuff out!!! for you to continue blue collar
work through this whole ordeal is pretty incredible. beleive me i know,
ive spent one third of my life in hard labor and construction.
geters quote:
"Hey, we and others have kicked around the taper caper since may of last year and have formulated individual plans to the means with lots of clarification as to all aspects of it and are now in the processes of it. I will not go crazy with the PCR ........etc.
pure dee eccentric geter!!!!!!
never seen nothin quite like it bubba, so glad you could show up and entertain us.
and even throw in some high falutin medical theories to boot.
looks like we both on taperoff mode so lets keep our fingers crossed for svr.
jools
my hemo has been below 10 for about six months now and i avoided procrit completely. (my doc said no anyway!!! (until 8.5) which i never saw.
hang in there and keep the support coming.
wyn
you know i just used this thyroid thing as a cheap excuse to bail out on yall!!!!!
i just cant keep up with all you strong women!!!! actually i feel that ive gambled at the right balance point, risk vs reward. time will tell. your viral response was a little slower than mine and i think your plan is appropriate. youre a tough cookie girl.
keep on helpin the needy!
bill1954
grisled warlord, venerated general, you can write a book about marching in a perfectly straight line and never missing a beat, ad infinitum! thats pretty cool. ill never forget
one of the times i was really acting kinda crazy and you stood right up and stuck up for me against a tidal wave of dissent. no one else was crazy enough to do that!
lets here it for the revolutionaries!!!! you make the battle plans and ill make the noise!!!
seriously though, i appreciate the appreciation.
thanks for the praise, you are sure setting a good example all the way around.
dont stop.
myown
even though i really appreciate your concern, dont worry about my outcome,
ive got this thing whooped!!!! (a few extra prayers never hurts though, thanks!)
child 24
i havent had a chance to commiserate with you about the latest news with nick.
it certainly can be a cruel world and you and nick are getting more than your
share of it. in my book, god only gives the harshest fates to the most capable
fighters and believers in hope. you guys are at the top of the charts in that regard.
take it as a compliment. i do believe 100% that you
and nick are in a point in medical progress where he can fully become whole again
like new. it may drag out for 10 years but i think youre teamwork is invincible
and some new medicines and maybe a transplant will fix everything eventually.
the support you give others around here is great. keep it up
ladywhy
the female warlord, i love your spirit. at least i can be comfortable that nothing will stop you from winning your war. and i mean nothing. you might deserve the award for
the most obstinate fighter and this my friend is a high compliment. keep the
support flowing around here, its much appreciated and keep on fighting
(i agree back off thre riba some.)
geterdone
the wisest and most poetic and scientific redneck ive ever seen in my life.
and im sure im leaving a bunch of stuff out!!! for you to continue blue collar
work through this whole ordeal is pretty incredible. beleive me i know,
ive spent one third of my life in hard labor and construction.
geters quote:
"Hey, we and others have kicked around the taper caper since may of last year and have formulated individual plans to the means with lots of clarification as to all aspects of it and are now in the processes of it. I will not go crazy with the PCR ........etc.
pure dee eccentric geter!!!!!!
never seen nothin quite like it bubba, so glad you could show up and entertain us.
and even throw in some high falutin medical theories to boot.
looks like we both on taperoff mode so lets keep our fingers crossed for svr.
jools
my hemo has been below 10 for about six months now and i avoided procrit completely. (my doc said no anyway!!! (until 8.5) which i never saw.
hang in there and keep the support coming.
wyn
you know i just used this thyroid thing as a cheap excuse to bail out on yall!!!!!
i just cant keep up with all you strong women!!!! actually i feel that ive gambled at the right balance point, risk vs reward. time will tell. your viral response was a little slower than mine and i think your plan is appropriate. youre a tough cookie girl.
keep on helpin the needy!
bill1954
grisled warlord, venerated general, you can write a book about marching in a perfectly straight line and never missing a beat, ad infinitum! thats pretty cool. ill never forget
one of the times i was really acting kinda crazy and you stood right up and stuck up for me against a tidal wave of dissent. no one else was crazy enough to do that!
lets here it for the revolutionaries!!!! you make the battle plans and ill make the noise!!!
seriously though, i appreciate the appreciation.
Thanks for the explanation...I do understand that even with a <5 test there could be those virons running around, that and the fact that if the are IU's that means you times that by 2.5, for copies! So you are being very cautious in your tests. Wish I had the means to get those low tests. In the end, it didn't matter. It sure does at the beginning and the end, I suppose, if you want to know to jump back in the tx game. I sure hope this is it and it all works out. Have you gotten the results back?
Linda
Linda
Hey CW!
It sounds like you’re coming around the bend and into the home stretch, my friend. If attitude counts for anything, you’re already cured. I’ve always enjoyed reading your posts, and have been inspired by your enthusiasm; it’s touched many souls in here.
I’ll be looking for results soon from you on the mystery labs; I wish you well with those as well as all the ones to come down the pike.
Take good care, and stay in touch—
Bill
It sounds like you’re coming around the bend and into the home stretch, my friend. If attitude counts for anything, you’re already cured. I’ve always enjoyed reading your posts, and have been inspired by your enthusiasm; it’s touched many souls in here.
I’ll be looking for results soon from you on the mystery labs; I wish you well with those as well as all the ones to come down the pike.
Take good care, and stay in touch—
Bill
I'm so happy for you! So 66 weeks total and you already feel better on reduced meds. That's great.
I'm on week 62 and can officially start the 10 week countdown. After 2 months of he!!, I went on wellbutrin and that seems to help me cope with the sx. At this point, i do think I'll finish the 72 but may taper off the final 4 weeks.
I'm glad to hear your SX have decreased and I'm praying i can say the same thing in another 2 months.
Congrats!
I'm on week 62 and can officially start the 10 week countdown. After 2 months of he!!, I went on wellbutrin and that seems to help me cope with the sx. At this point, i do think I'll finish the 72 but may taper off the final 4 weeks.
I'm glad to hear your SX have decreased and I'm praying i can say the same thing in another 2 months.
Congrats!
im a stage 3 so i couldnt wait. i didnt clear until week 19 so i needed extra
time and dose.
on the pcrs, if you do a heptimax >5 and it comes out "und" you can still have a viral load of 3 or 4 or 2 or 1. thats enought to cause relapse and you wouldnt know you have that viral load still in your blood.
by taking multiple samples all at once (like i did with the labcorps test) and they all come back und, you have made sure that you have a viral load of less than 0.1 iu.
thats about 25 times more sensitive than the other tests. it doesnt gurantee an svr but less virus is always better. think about it like this, if you had 20 viruses in 20 gallons of water you would expect to catch 1 if you dipped out 1 gallon of water. if you only had 4 viruses in 20 gallons of water then you would expect to have to dip out 5 gallons of water to catch just one. this theory only works when the viral load is exremely low.
and because of the nature of this virus, none of us can ever truly have a vl of 0.0.
there is always (and i mean always) at least some virus left even if its just 1.
time and dose.
on the pcrs, if you do a heptimax >5 and it comes out "und" you can still have a viral load of 3 or 4 or 2 or 1. thats enought to cause relapse and you wouldnt know you have that viral load still in your blood.
by taking multiple samples all at once (like i did with the labcorps test) and they all come back und, you have made sure that you have a viral load of less than 0.1 iu.
thats about 25 times more sensitive than the other tests. it doesnt gurantee an svr but less virus is always better. think about it like this, if you had 20 viruses in 20 gallons of water you would expect to catch 1 if you dipped out 1 gallon of water. if you only had 4 viruses in 20 gallons of water then you would expect to have to dip out 5 gallons of water to catch just one. this theory only works when the viral load is exremely low.
and because of the nature of this virus, none of us can ever truly have a vl of 0.0.
there is always (and i mean always) at least some virus left even if its just 1.
Still not understanding...why did you have multiple PCR's? Sensitive tests can be important, but 4 at the same time? Perhaps you can expain. How did they come out? Hoping you had a great result!
Still not understanding...why did you have multiple PCR's? Sensitive tests can be important, but 4 at the same time? Perhaps you can expain. How did they come out? Hoping you had a great result!
Still not understanding...why did you have multiple PCR's? Sensitive tests can be important, but 4 at the same time? Perhaps you can expain. How did they come out? Hoping you had a great result!
You did it!!! Congrats!!...here's to SVR!!
Did they put you on procrit when your hemo dropped? They started me on it in Nov. when my hemo went to 9.3, and it helped, but it's been a yoyo trying to get the dosage right. I'm finally doing 1ml every other week. My Dr. wants me on it til end of tx, which will be April 25th!! I can't wait because I'm feeling like a pincushion!
Congratulations again!!!
Did they put you on procrit when your hemo dropped? They started me on it in Nov. when my hemo went to 9.3, and it helped, but it's been a yoyo trying to get the dosage right. I'm finally doing 1ml every other week. My Dr. wants me on it til end of tx, which will be April 25th!! I can't wait because I'm feeling like a pincushion!
Congratulations again!!!
Isn't it a cruelworld? Geez, I agree. Congrats on going the 59 weeks. I only could make to 47 weeks, but wanted to go more. We do our damned best and that is all we can do! You have a great chance of SVR. I assume you are are a 1a or b, don't know when you were UND...at week 4 or 12 or 18? perhaps you said....I applaud you and me.... we went through hell and back on tx. If it works GREAT. We start with a 50% chance, right?
I am not understanding why you had 4 PCR's? I chose not to pay for the sensitive one and I don't think it made a huge difference. Only when my idiot dr said I cleared at week 12 and I questioned it.....over and over...HR helped me in a conference call with the lab. I didn't get UND at week 12....What a huge difference, huh? I wanted to go to week 72, but couldn't make it...only made it to week 47. You made it to week 59, that is great! I sure hope you are clear and you have a great chance to do so. Not knowing your stats...Only guessing. I hope you make it!!! What stage are you?
I am not understanding why you had 4 PCR's? I chose not to pay for the sensitive one and I don't think it made a huge difference. Only when my idiot dr said I cleared at week 12 and I questioned it.....over and over...HR helped me in a conference call with the lab. I didn't get UND at week 12....What a huge difference, huh? I wanted to go to week 72, but couldn't make it...only made it to week 47. You made it to week 59, that is great! I sure hope you are clear and you have a great chance to do so. Not knowing your stats...Only guessing. I hope you make it!!! What stage are you?
Shoot! Forgot to past the last and most important part…. Long live SVR…. SVR forever!!!!!
geter
geter
Congrats on the 59 weeks, you are dutifully here by honored in the 1400 hundred club @ the 160 level, god bless you man. Hey, we and others have kicked around the taper caper since may of last year and have formulated individual plans to the means with lots of clarification as to all aspects of it and are now in the processes of it. I will not go crazy with the PCR’s but am glad you did for which you have obtained first hand knowledge of it and the input from hr surrounding the topic and your questioning in a positive light was just a little more icing on the cake of knowledge for me in my decisions at EOT in which I had dubbed War Games 1983, google. Hopefully the Thyroid will straighten out after you’re off the meds completely for I’m in the same boat and is a lingering concern for me as well, when I went back to full dose plus the last 4 weeks it had started bouncing again. I just had blood work done with a TH cascade as well and will know soon if I’m still UND and where the TH is at.
Again Congratulations!
geterdone
Again Congratulations!
geterdone
...and i hope I get to hear you once again on the horn...in a celebration.
Well...you have certainly done your homework and I give you an A.
I'm glad to hear you're feeling better and out there riding (better two min. than none!) How much weight did you actually lose? I am glad it is almost over for you and like all of us here, I wish you health, peace, happiness and SVR!
Don't leave just yet...keep us informed on all results.
Good job!
y
As usual, I don't know how long I'm doing this...but I'm thinkin' of quitting the overdosin' riba...it is pretty cruel. I am still doin' the 1400 mg rather than the 1000mg. Which reminds me....better do that now.
I'm glad to hear you're feeling better and out there riding (better two min. than none!) How much weight did you actually lose? I am glad it is almost over for you and like all of us here, I wish you health, peace, happiness and SVR!
Don't leave just yet...keep us informed on all results.
Good job!
y
As usual, I don't know how long I'm doing this...but I'm thinkin' of quitting the overdosin' riba...it is pretty cruel. I am still doin' the 1400 mg rather than the 1000mg. Which reminds me....better do that now.
i weight 160 and talked my doc into 7 riba a day, 5 or 6 is recommended.
the 4 tests are for viral load, i just want to make sure as possible i dont have any virus in my blood as i quit the treatment. i ordered the most sensitive viral load test available by labcorps which measures down to 2 iu/ml. (ngi ultraqual)
i doubt ill disappear from the forum, it seems like anyone who goes through this
is connected to this forum for life. like you say, lots of hurting people.
the 4 tests are for viral load, i just want to make sure as possible i dont have any virus in my blood as i quit the treatment. i ordered the most sensitive viral load test available by labcorps which measures down to 2 iu/ml. (ngi ultraqual)
i doubt ill disappear from the forum, it seems like anyone who goes through this
is connected to this forum for life. like you say, lots of hurting people.
The labs can really get on your nerves. I know what you mean. Ya try to practically spoon feed them and they still get it wrong.
Wishing you the very best. I so hope this is all behind you soon. Its weird cause I get the jitters too when someone is waiting for their results. I guess we all hold our breath for one another. The wait is always tough during tx and after tx - its hard, but I pray that God gives you perfect peace and perfect health with that peace.
I'll be looking forward to hearing your good news,,,
MO
Wishing you the very best. I so hope this is all behind you soon. Its weird cause I get the jitters too when someone is waiting for their results. I guess we all hold our breath for one another. The wait is always tough during tx and after tx - its hard, but I pray that God gives you perfect peace and perfect health with that peace.
I'll be looking forward to hearing your good news,,,
MO
well the extra Riba explains your nome de plume now doesn't it !!! No wonder you choose it.
so glad you made it through, but how is my question??? What dose and weight were you at if you don't mind sharing.
And, did you have a doc willing to allow you an above SOC dose or did you have to get creative in finding the extra meds???
ps, please don't entirely disappear, every voice in here has merit and is needful to newbies. The best way to thank those that helped you, is to keep giving back to the board whenever the Spirit prompts you. Lots of hurting people you know.
congrats on your good stats...
you said you ordered 4 tests.....could you tell us which 4 ? Or did you send to different labs? thanks
maryB
so glad you made it through, but how is my question??? What dose and weight were you at if you don't mind sharing.
And, did you have a doc willing to allow you an above SOC dose or did you have to get creative in finding the extra meds???
ps, please don't entirely disappear, every voice in here has merit and is needful to newbies. The best way to thank those that helped you, is to keep giving back to the board whenever the Spirit prompts you. Lots of hurting people you know.
congrats on your good stats...
you said you ordered 4 tests.....could you tell us which 4 ? Or did you send to different labs? thanks
maryB
I admire your will, your stamina, your endurance thru all of this. I wish you all the best and SVR!
You have been a great example for all of us.
I wish you all the luck.
Here's to winning the war!
And to all the laughs you've given to all uf us.
You have been a great example for all of us.
I wish you all the luck.
Here's to winning the war!
And to all the laughs you've given to all uf us.
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