Aa
Relapsed on 12 wk post viral load
Just updating... got the call this am. Not intending to jump back into treatment w/on Harvoni or anything else. I've got time to wait. I have to run to an appt. I'll post more later. Susan400
You were and still are a huge inspiration to me Susan. I can only pray that at some point you finally get the victory Magnum mentions. Peace
Being the fighter you are, this is just a temporary setback. I know you will be victorious in the future treatment. Giving a body a rest? Not a bad idea. I feel your pain and agony and pray all will be well my friend...
Magnum
Magnum
Biopsies are still widely used but not as frequently for all conditions. And the Fibrosure test is a better diagnostic test to find out the level of fibrosis one would have.
However,a liver biopsy is still a more precise diagnostic test to find out if the patient has developed cirrhosis and to what extent even though the hepatocytes are being extracted from one location of the liver because what us being sought and monitored are the actual liver cells which will indeed have certain characteristics that tells the clinician that the patient is indeed starting to become cirrhotic, or has gone up one stage, or has even reached end stage liver disease otherwise known as ESLD much more accurately than a fibrosure test can.
Why? Because a fibrosure test does not investigate hepatocytes at the cellular level and cannot distinguish the unique indicators that will be found in only under a microscope to indicate whether or not the patient is indeed cirrhotic or not.
A fibrosure test works under a totally differentpremise because of the nature of the test itself which is being non-invasive and therefore cannot actually isolate hepatocytes or liver cells in order to investigate them on a much smaller scale.
So until more liver centers have on hand fibrosure machines to perform non-invasive and preliminary diagnostic tests, the Gold standard liver biopsy will still be widely used in order to find out how bad the patient's liver is. The better solution would be to have both types of diagnostic testing available and then the liver center can be more preferential as to whether or not a patient would indeed need a follow up liver biopsy.
Especially if the fibrosure results show that the level of fibrosis is @ the bridging stage which could indicate roughly as to whether or not the patient has gotten to the point where cirrhosis is starting to rear it's ugly head, and the only way to know that absolutely is by performing a liver biopsy. The two diagnostic procedure would then be able to compliment each other in this sort of scenario.
Finally, there's been a lot of talk online that alludes to the misunderstanding that if there's no cirrhotic tissue where the biopsy is being performed then how can they be sure that their diagnosis is accurate? Well, like I wrote previously it's not whether or not the biopsy will actually pull out cirrhotic liver tissue or hepatocytes in bunches which is what is being extracted via a very long and big needle.
It's to get liver tissue that will be examined under a microscope which can only be done in an invasive manner because unfortunately, a fibrosure exam will not give the clinician the ability to distinguish on a cellular level whether or not the patient is or is not yet at a cirrhotic stage of liver damage. it simply is incapable of doing this because it's a non-invasive procedure that doesn't extract and isolate hepatocytes in order for the hepatologist to study in greater detail than what can be done with the fibrosure test. Did you already have a biopsy performed on you?
Orlando is a very nice place still and you're fortunate that it hasn't deteriorated like many other urban area's are. I will be praying for you Susan!!! All the best to you and your family.
However,a liver biopsy is still a more precise diagnostic test to find out if the patient has developed cirrhosis and to what extent even though the hepatocytes are being extracted from one location of the liver because what us being sought and monitored are the actual liver cells which will indeed have certain characteristics that tells the clinician that the patient is indeed starting to become cirrhotic, or has gone up one stage, or has even reached end stage liver disease otherwise known as ESLD much more accurately than a fibrosure test can.
Why? Because a fibrosure test does not investigate hepatocytes at the cellular level and cannot distinguish the unique indicators that will be found in only under a microscope to indicate whether or not the patient is indeed cirrhotic or not.
A fibrosure test works under a totally differentpremise because of the nature of the test itself which is being non-invasive and therefore cannot actually isolate hepatocytes or liver cells in order to investigate them on a much smaller scale.
So until more liver centers have on hand fibrosure machines to perform non-invasive and preliminary diagnostic tests, the Gold standard liver biopsy will still be widely used in order to find out how bad the patient's liver is. The better solution would be to have both types of diagnostic testing available and then the liver center can be more preferential as to whether or not a patient would indeed need a follow up liver biopsy.
Especially if the fibrosure results show that the level of fibrosis is @ the bridging stage which could indicate roughly as to whether or not the patient has gotten to the point where cirrhosis is starting to rear it's ugly head, and the only way to know that absolutely is by performing a liver biopsy. The two diagnostic procedure would then be able to compliment each other in this sort of scenario.
Finally, there's been a lot of talk online that alludes to the misunderstanding that if there's no cirrhotic tissue where the biopsy is being performed then how can they be sure that their diagnosis is accurate? Well, like I wrote previously it's not whether or not the biopsy will actually pull out cirrhotic liver tissue or hepatocytes in bunches which is what is being extracted via a very long and big needle.
It's to get liver tissue that will be examined under a microscope which can only be done in an invasive manner because unfortunately, a fibrosure exam will not give the clinician the ability to distinguish on a cellular level whether or not the patient is or is not yet at a cirrhotic stage of liver damage. it simply is incapable of doing this because it's a non-invasive procedure that doesn't extract and isolate hepatocytes in order for the hepatologist to study in greater detail than what can be done with the fibrosure test. Did you already have a biopsy performed on you?
Orlando is a very nice place still and you're fortunate that it hasn't deteriorated like many other urban area's are. I will be praying for you Susan!!! All the best to you and your family.
Thank-you, Hank, sounds encouraging! As you know, this disease..., is also very expensive. Thankly, on my Sovaldi/Peg/Riba, I got insurance coverage under my husband's workplace insurance and what they didn't cover, like the 20% copay-I qualified for help under the Gilead P.A.N. With that being said, since as far as I still know, I am a long way off from cirrhosis, I know that they would balk at wanting to shell out thousands of dollars again, right away. Another reason to wait awhile. As long as my LFT's remain under 100 and the rest of my liver fibro blood tests and ultrasound look good, I'll just wait. Also, maybe in a year or two, there will be a Fibroscan machine closer by where I live. Even Orlando would be convenient and the medical community there is growing alot, so who knows? It just doesn't make any sense to drive a 6 hr round trip for a test that takes about 15 min max. And from what I've been told, they rarely do liver biopsies on chronic Hep C patients anymore.
Susan400
Susan400
"I will say this however, the harvoni is the first drug that actually made me feel almost notmal only after 2 weeks of being on it" I meant to say almost normal. Sorry about the typo. heheh lol!
Harvoni Hank Aka genotype1a
Harvoni Hank Aka genotype1a
Sorry to read about your disappointing experience Susan... I uniquely do understand what you have been going through with all of the previous treatment disappointments as I have also treated 10 times myself and even after surviving a liver transplant 17 years ago the virus came back and defiantly sticking out it's nasty tongue @ me saying "Nah - nah - na na nah!" So I certainly can relate to not wanting to infuse any new unrealistic expectations in any of the new drugs that have come out recently.
So Yeah! take your time because you do have that good fortune of not being on borrowed time with cirrhosis or are post transplant like myself and I hope that doesn't happen to you.Just remember this from one old warrior to another... The Harvoni drug finally did it for me and I'm virus free so far but like you said previously only time will tell. And there was2 times when I was SVR for over 2 years only to relapse again with the previous treatments so I'm only cautiously optimistic with the Harvoni...
I will say this however, the harvoni is the first drug that actually made me feel almost notmal only after 2 weeks of being on it and none of the other treatments ever made me feel that way or how I currently feel health wise and none of the other treatments even after SVR had ever made me feel so reinvigorated while I was still on it and afterwards too...
And the side effects??? What sides??? Compared to the older SOC - wait! There is no comparison because I didn't experience any sides with the Harvoni... So like I said earlier, I'm cautiously optimistic about my fate this time around and I hope this does give you some hope dear. All the best to you and rest up for your final battle Susan because your victory will be soon enough!
Respectfully,
Harvoni Hank
So Yeah! take your time because you do have that good fortune of not being on borrowed time with cirrhosis or are post transplant like myself and I hope that doesn't happen to you.Just remember this from one old warrior to another... The Harvoni drug finally did it for me and I'm virus free so far but like you said previously only time will tell. And there was2 times when I was SVR for over 2 years only to relapse again with the previous treatments so I'm only cautiously optimistic with the Harvoni...
I will say this however, the harvoni is the first drug that actually made me feel almost notmal only after 2 weeks of being on it and none of the other treatments ever made me feel that way or how I currently feel health wise and none of the other treatments even after SVR had ever made me feel so reinvigorated while I was still on it and afterwards too...
And the side effects??? What sides??? Compared to the older SOC - wait! There is no comparison because I didn't experience any sides with the Harvoni... So like I said earlier, I'm cautiously optimistic about my fate this time around and I hope this does give you some hope dear. All the best to you and rest up for your final battle Susan because your victory will be soon enough!
Respectfully,
Harvoni Hank
So very sorry this has happened. I was so hoping that this would be your final chapter. I do think its a wise decision to lay low for awhile and regroup. As you've said your still early stage so Tx can be delayed until your ready.
Please know we will be here when the time is right for you.
Take care
.....Kim
Please know we will be here when the time is right for you.
Take care
.....Kim
Completely understand your position, Susan
We sometimes forget the emotional toll - as well as the toxic burden and sides - that come with treatment
Have a lovely holiday and I am certain that there is a treatment in the future that will bring you SVR!
We sometimes forget the emotional toll - as well as the toxic burden and sides - that come with treatment
Have a lovely holiday and I am certain that there is a treatment in the future that will bring you SVR!
Okay, I posted this on the other Medhelp board, but I'll share with you all on this side in case you didn't see it.
I'm not evening considering doing anything about treatment again for a good while. I know that the new TX's are doing great things for a lot of people, but I have been thru (this last one was my 12th) treatments. My body has been exposed to protease inhibitor (Telaprevir/Incivek) and now a Polymerase Inhibitor(Sovaldi). The whole emotional unheaval it does to me each time I've gone through this is just taxing. All the labs and waiting and stress of wondering about it, it just-it's just too much. I've been doing this for years and years of my life with these treatments. I am blessed that I've not progressed to cirrhosis and for that, I'm happy, maybe all these treatments at least gave my liver a rest and that has kept my HCV from progressing to the cirrhosis.., is my way of thinking. The whole thing is also expensive (as far as insurance and the patient assess program), this time, fortunately, I didn't get left with a co-pay, but the next time the insurance company may not be so willing to pay for it considering that I don't have any late stage fibrosis. So, there are so many factors to consider. I've gone this long and managed to 'live with' Hep C, so it will be alright for me to follow with my doctors and just let these new drugs play out in the real world for awhile, and see that happens with them in the long haul. Anyway, I am not devastated, just tired....so tired and weary of doing this bandwagon. I know you can see where I'm coming from... Take care and I wish you the very best in SVR! Susan400
I'm not evening considering doing anything about treatment again for a good while. I know that the new TX's are doing great things for a lot of people, but I have been thru (this last one was my 12th) treatments. My body has been exposed to protease inhibitor (Telaprevir/Incivek) and now a Polymerase Inhibitor(Sovaldi). The whole emotional unheaval it does to me each time I've gone through this is just taxing. All the labs and waiting and stress of wondering about it, it just-it's just too much. I've been doing this for years and years of my life with these treatments. I am blessed that I've not progressed to cirrhosis and for that, I'm happy, maybe all these treatments at least gave my liver a rest and that has kept my HCV from progressing to the cirrhosis.., is my way of thinking. The whole thing is also expensive (as far as insurance and the patient assess program), this time, fortunately, I didn't get left with a co-pay, but the next time the insurance company may not be so willing to pay for it considering that I don't have any late stage fibrosis. So, there are so many factors to consider. I've gone this long and managed to 'live with' Hep C, so it will be alright for me to follow with my doctors and just let these new drugs play out in the real world for awhile, and see that happens with them in the long haul. Anyway, I am not devastated, just tired....so tired and weary of doing this bandwagon. I know you can see where I'm coming from... Take care and I wish you the very best in SVR! Susan400
Thanks all my Hepper family.....I appreciate your understanding and kind words. Had a nice day today, albeit a LONG day, driving to see my son and spending 4 hrs with him, having lunch, playing boards games and cards. Got up at 4 am on the road at 7, got in to see him at 11 and with the holiday traffic back home at 6. I was having alot of tiredness for the past week so it was a big blessed to have my mom and sister along on the trip and my sister did the majority of the driving. I feel like I've been hit with a hammer..., just zzz anyway, thanks. I'll probably pop back in again before Christmas, but if not Merry Christmas/Happy Hanuakah or Happy Holidays..., however you want to take that. Susan400
Hi dear one.... Ahhhh!! I left you a message on your profile. Everyone has said it all.... And words fail me. Feeling your disappointment. Your such a blessing & warrior( first to respond to me).... Sometimes, I think, we're used on the sidelines to show courage, strength & so much more, then your own blessing CURE comes. I know you'll get that, I'm just so darn sad & sorry you got picked for that job. We walk together sister hepper and if I get there too, we'll dance together.
Much love,
Randy
'
Much love,
Randy
'
Oh man! That is really disappointing Susan. I was so hoping that this would be the one for you to reach SVR
Sending good thoughts your way and I know that you will beat this thing
All the best to you
~ Linda
Sending good thoughts your way and I know that you will beat this thing
All the best to you
~ Linda
Hi Susan
So sorry to hear you have relapsed.
I never had any luck on the old treatments null responder every time so I was very hopeful seeing UND and normal liver functions. I had the same thing as a warning when I got my liver functions back before my viral load. They had gone up to above normal again. So I too was very disappointed to see my viral load right back to where it was just 12 weeks after treatment.
I just found an old post of yours I had forgotten this was round 12 for you dang. We know you are a fighter and you will be back when you are ready.
Take your time take a breath or two or even three. Tomorrow is another day to begin the fight anew
Sending a hug your way
Lynn
So sorry to hear you have relapsed.
I never had any luck on the old treatments null responder every time so I was very hopeful seeing UND and normal liver functions. I had the same thing as a warning when I got my liver functions back before my viral load. They had gone up to above normal again. So I too was very disappointed to see my viral load right back to where it was just 12 weeks after treatment.
I just found an old post of yours I had forgotten this was round 12 for you dang. We know you are a fighter and you will be back when you are ready.
Take your time take a breath or two or even three. Tomorrow is another day to begin the fight anew
Sending a hug your way
Lynn
It was the 12 wk after the end of treatment viral load. Anyway.,, disappointing but not the end of the world. Thanks for caring. Susan400
My heart goes out to you Susan. I'm so sorry to hear the news especially so late in the EOT labs. Take your time to regroup and relax. You are in my prayers. Stay in touch so we know how you are doing ok?
Peace my friend
Deb
Peace my friend
Deb
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