Aa
Freaked out a bit
and i accidentally posted this in the wrong place on the other side.
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Shot 23 in two days. I still can't get a clear answer about EOT or extend.
Went to a teaching hospital after some forum members gave me excellent advice around wk 5. I had just gotten wk 4 PCR and didn't clear (g3). Hepatologist was great and suggested that my GI might consider extension and he would send her report.
Week 12, I cleared. No PCR in between. My GI said she would extend. She was going to consult and let me know.
Recently, the GI's office called me to see if I could reach the hepatologist because their calls went unreturned. I called. I emailed. I pestered. Last week I called the administrator and left voice mail. This week a nurse called me back. The hepa I saw went back to Med School. They would have someone else pull my records. Yesterday they called me back and said "stop at 24. There are no studies that suggest extension influences SVR for g3.
Came home and pouted a bit. Then I was excited because I would be done a week before Christmas. Then I was worried. Then happy. I didn't expect to be overwhelmed by emotions.
This morning my GI's office called and asked me to reach the Roche rep because they keep up on protocols. The rep for the area is out on leave and instructs to call the supervisor. I left message and got a call. We did a quick review and she said I would definitely need to extend. She was going to call hepatology and speak with the clinical director who understands the protocols. She also said that my insurance would probably deny extension but that would be happy to provide the meds.
Okay. that's sounding better.
Then my GI called back again and said they got a letter regarding UM's recommendation to stop at 24. I told her the Roche person is trying to get the right doctors involved and believes I need to extend. "okay, let us know what they say"
I'm so frustrated by all of this and really wish they had some current standard SOC for g3.
So tomorrow will be 10 weeks since we first discussed extension and I still don't know!
Keeping a warm fuzzy positive attitude is a chore at the moment, my friends. I want an answer. Roche person said to sit tight and wait until she can get back to me.
Thanks for letting me vent here.
Any thoughts.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Shot 23 in two days. I still can't get a clear answer about EOT or extend.
Went to a teaching hospital after some forum members gave me excellent advice around wk 5. I had just gotten wk 4 PCR and didn't clear (g3). Hepatologist was great and suggested that my GI might consider extension and he would send her report.
Week 12, I cleared. No PCR in between. My GI said she would extend. She was going to consult and let me know.
Recently, the GI's office called me to see if I could reach the hepatologist because their calls went unreturned. I called. I emailed. I pestered. Last week I called the administrator and left voice mail. This week a nurse called me back. The hepa I saw went back to Med School. They would have someone else pull my records. Yesterday they called me back and said "stop at 24. There are no studies that suggest extension influences SVR for g3.
Came home and pouted a bit. Then I was excited because I would be done a week before Christmas. Then I was worried. Then happy. I didn't expect to be overwhelmed by emotions.
This morning my GI's office called and asked me to reach the Roche rep because they keep up on protocols. The rep for the area is out on leave and instructs to call the supervisor. I left message and got a call. We did a quick review and she said I would definitely need to extend. She was going to call hepatology and speak with the clinical director who understands the protocols. She also said that my insurance would probably deny extension but that would be happy to provide the meds.
Okay. that's sounding better.
Then my GI called back again and said they got a letter regarding UM's recommendation to stop at 24. I told her the Roche person is trying to get the right doctors involved and believes I need to extend. "okay, let us know what they say"
I'm so frustrated by all of this and really wish they had some current standard SOC for g3.
So tomorrow will be 10 weeks since we first discussed extension and I still don't know!
Keeping a warm fuzzy positive attitude is a chore at the moment, my friends. I want an answer. Roche person said to sit tight and wait until she can get back to me.
Thanks for letting me vent here.
Any thoughts.
Thanks to all of you lovely people who responded (and to deb on the thread I mistakenly had put on the other forum).
GI called yesterday and said they got the report from UM. STOP AT 24 WEEKS!! blah blah blah. The nurse said GI doesn't care what the Roche lady says, UM says there's no data to support extension.
I called Roche lady and left a VM. Mind you, I'm at work and have to dash out of a patient's home or a meeting at the office each time I get or make a call. She called back and left a VM. It basically said "chill out." She's in contact with a whole bunch of hospitals and is gathering up evidence to present to my GI. Said it will take a few days.
I also wrote to Dr R last night and begged him to please help with this. I know he supports extension but I just have to get to him! Then I passed out.
I appreciate everyone's support and encouragement.
Anyway, GI wants to see me in her office this morning. I hope it goes ... ummm ...well.
GI called yesterday and said they got the report from UM. STOP AT 24 WEEKS!! blah blah blah. The nurse said GI doesn't care what the Roche lady says, UM says there's no data to support extension.
I called Roche lady and left a VM. Mind you, I'm at work and have to dash out of a patient's home or a meeting at the office each time I get or make a call. She called back and left a VM. It basically said "chill out." She's in contact with a whole bunch of hospitals and is gathering up evidence to present to my GI. Said it will take a few days.
I also wrote to Dr R last night and begged him to please help with this. I know he supports extension but I just have to get to him! Then I passed out.
I appreciate everyone's support and encouragement.
Anyway, GI wants to see me in her office this morning. I hope it goes ... ummm ...well.
Hey sunqueen, sounds like you were seeing DR R at UM...right ?
Sounds like you got caught up in some nursing red tape and couldn't get thru to the Dr.
He is now doing a fellowship in another GI field. He worked right under DR S. There is something going on there about this. Not sure what it is though. Might be political...lol. But Dr R is still a Hepatologist, and still at UM. He was one of my Dr also. I like him a lot. He is very good. Dr R is up on all the new cutting edge studies, and diffidently believes in extending, and longer protocols.
In fact, when I asked Dr R about the short 12 or 16 wk new g2 protocols, He looked at me real seriously and said,
" if you relapse, you will just have to start again, and go for 36 or 48 wks the second time. Your lucky you are not a geno1, all my geno 1 do 60-72 weeks."
That shut me up fast.
Anyhow, pm me if you want and I diffidently can help you get a hold of him. He returned my last email within an hour, 5 days ago
apache
Sounds like you got caught up in some nursing red tape and couldn't get thru to the Dr.
He is now doing a fellowship in another GI field. He worked right under DR S. There is something going on there about this. Not sure what it is though. Might be political...lol. But Dr R is still a Hepatologist, and still at UM. He was one of my Dr also. I like him a lot. He is very good. Dr R is up on all the new cutting edge studies, and diffidently believes in extending, and longer protocols.
In fact, when I asked Dr R about the short 12 or 16 wk new g2 protocols, He looked at me real seriously and said,
" if you relapse, you will just have to start again, and go for 36 or 48 wks the second time. Your lucky you are not a geno1, all my geno 1 do 60-72 weeks."
That shut me up fast.
Anyhow, pm me if you want and I diffidently can help you get a hold of him. He returned my last email within an hour, 5 days ago
apache
Sunqueen,
You have a low baseline viral load, so did I. My research indicates that if we treat long enough according to our response, us people with LVL have a mighty good chance of becoming SVR.
I totally agree with you that 110 is not UND, and think you are very wise and admirable to be doing all in your power to extend.
Mphillips,
Your story gives me the chills. How wise you were, and still now you are the one who has to pay for the doctor's decision.
Best of luck to both of you,
Za
You have a low baseline viral load, so did I. My research indicates that if we treat long enough according to our response, us people with LVL have a mighty good chance of becoming SVR.
I totally agree with you that 110 is not UND, and think you are very wise and admirable to be doing all in your power to extend.
Mphillips,
Your story gives me the chills. How wise you were, and still now you are the one who has to pay for the doctor's decision.
Best of luck to both of you,
Za
I am sorry to hear of your predicament. I too went through the same scenario. I am 2b with cirrhosis,und at week 12. At about 20 weeks, thanks to this forum and doing research, i found that extending to 48 weeks was beneficial for people with cirrhosis. I approached my GI about it and he told me to talk to mu hepatologist which replied that there were no studies proving that and to stop at 24 weeks. Well 6 weeks after stopping tx I relapsed. So now here I am back on tx for 48 weeks now. Do all you can so that you don't have to go through tx twice like me.
Mark
Mark
Too many great people with G3 have relapsed. It's not such an easy geno if you are one of the people who don't hit that first RVR. I'd really work on going for it. I know that I always sound very pro-extending but I do believe it's crucial to make sure you get it all the first time and get rid fo it forever.
You're already in the mindset that if you have to do it you will........so why not just go for it. it seems you don't have anything to lose and have everything to gain.
Wish Kalio was still around - she was a G3 and had to fight like hell on her second attempt to get SVR (But thank God she did).
You're already in the mindset that if you have to do it you will........so why not just go for it. it seems you don't have anything to lose and have everything to gain.
Wish Kalio was still around - she was a G3 and had to fight like hell on her second attempt to get SVR (But thank God she did).
As stated, it's good that you have an ally in the Roache representative, but always keep in mind that like with your GI, people often have better intentions than follow through, especially when they run into a hurdle, even at times a little one. Therefore, important to be as proactive as possible, which would reasonably include a backup plan such as now arranging a consult with different liver specialist who might be more amenable in getting the medications. In any event, you don't want a lapse in Peg injections should you move forward beyond 24 weeks, so that's another issue you might think about being proactive about.
Oh and epihiny (almost missed you!) -- Thanks for the laugh. Heh! At first I thought you were being dry and cheeky with me and then I realized that you missed what I said. I got a good chuckle out of it. I have been reading all of your threads with great interest and I know you have gone through this. Take Care!
To za: No, your words do not sound harsh at all to me. I don't want to wait, relapse and do this again. My baseline vl was 326,000 and my week 4 was 110. We have a saying here. Close only counts in horseshoes and hand grenades. 110 is not UND.
Rock - I'm kicking as hard and fast as I can. Will kick more today.
Jim -- thanks for the study. I printed and added it to my arsenal!
Marcia -- I kind of knew this would be a problem and was a little hesitant when GI said "we'll extend" at week 12. Now, I don't mind that they put all of the responsibility on me to hunt people down at university hospitals and pharmaceutical companies, but surely there must be some people who are not up for this daunting craziness and resign to do whatever the doctor tells them. I look at it as another universe lesson: I do this stuff for strangers all of the time. Now it's time to put me first. I may not win and get cut off at week 24 but I'm going down fighting. Hugs, sis!
Trinity - Read your response on the other side and I thank you for it. The Roche lady assured me that she was well connected to the hepatologist and stated her belief that they asked the wrong one (an associate prof) instead of the big guy who keeps up on the research and newer protocols. I liked her. She was very matter of fact and made sure that I knew that if I relapse I would have to do 48 instead of 24 (well yah! that's why I'm so neurotic at the moment!). She was very assuring that she would get to the right hepa and get the go ahead.
Kristina - I had an insanely busy day but I knew the clock was ticking and I would need to move quickly. I processed all the previous night and knew I couldn't take it lying down, so to speak. I was in my usual most-of-Wednesday staff meeting where we turn off our cell phones. Not me. I apologetically ran out of the room and straight to the parking lot (for privacy) so I could negotiate all of these calls! I was mighty tired at the end of two straight days of this and work!
Speaking of work ... gotta dash ......
Rock - I'm kicking as hard and fast as I can. Will kick more today.
Jim -- thanks for the study. I printed and added it to my arsenal!
Marcia -- I kind of knew this would be a problem and was a little hesitant when GI said "we'll extend" at week 12. Now, I don't mind that they put all of the responsibility on me to hunt people down at university hospitals and pharmaceutical companies, but surely there must be some people who are not up for this daunting craziness and resign to do whatever the doctor tells them. I look at it as another universe lesson: I do this stuff for strangers all of the time. Now it's time to put me first. I may not win and get cut off at week 24 but I'm going down fighting. Hugs, sis!
Trinity - Read your response on the other side and I thank you for it. The Roche lady assured me that she was well connected to the hepatologist and stated her belief that they asked the wrong one (an associate prof) instead of the big guy who keeps up on the research and newer protocols. I liked her. She was very matter of fact and made sure that I knew that if I relapse I would have to do 48 instead of 24 (well yah! that's why I'm so neurotic at the moment!). She was very assuring that she would get to the right hepa and get the go ahead.
Kristina - I had an insanely busy day but I knew the clock was ticking and I would need to move quickly. I processed all the previous night and knew I couldn't take it lying down, so to speak. I was in my usual most-of-Wednesday staff meeting where we turn off our cell phones. Not me. I apologetically ran out of the room and straight to the parking lot (for privacy) so I could negotiate all of these calls! I was mighty tired at the end of two straight days of this and work!
Speaking of work ... gotta dash ......
I'm so pleased you managed to followup; what a really stressful time for you.
I was hoping my specialist would look at whether I needed to extend on the basis of my early cirrhosis and my prior relapse to monotherapy in '94, despite RVR (to the limit of <15IU), but got the reply 'no studies support especially as you gained RVR'. It is a great pity that more Specialists are not really up to date enough to make an informed decision for individual tx protocal.
Hopes and prayers to you Sunqueen - the Roche lady should certainly pull some weight and it sounds as though they're already willing to listen to her!!
I was hoping my specialist would look at whether I needed to extend on the basis of my early cirrhosis and my prior relapse to monotherapy in '94, despite RVR (to the limit of <15IU), but got the reply 'no studies support especially as you gained RVR'. It is a great pity that more Specialists are not really up to date enough to make an informed decision for individual tx protocal.
Hopes and prayers to you Sunqueen - the Roche lady should certainly pull some weight and it sounds as though they're already willing to listen to her!!
I posted my experience with extending on the other side if you are interested. I truly understand how you feel.
My dear sis', my heart really goes out to you. I have a strong feeling that it will be sorted out, since you said that Roche is on their case.
I would just try to line up something for the extra meds, in case there is a gap.
The problem is that there ARE no studies supporting extention for g3. But they have started the trials for it. It will take a long time, before they have the results. I had the same response from my hepa, but she wanted to extend, so she researched it further.
The irrational thing is that if they have proven that g1's can profit from extending, why is it so difficult to accept that it could just be true for other genos????
You are in my prayers... You're gonna kick this one in the behind! Marcia
I would just try to line up something for the extra meds, in case there is a gap.
The problem is that there ARE no studies supporting extention for g3. But they have started the trials for it. It will take a long time, before they have the results. I had the same response from my hepa, but she wanted to extend, so she researched it further.
The irrational thing is that if they have proven that g1's can profit from extending, why is it so difficult to accept that it could just be true for other genos????
You are in my prayers... You're gonna kick this one in the behind! Marcia
Oooh, I just re read your post! It is quite late in the game BUT the same thing happened to me, I had to "borrow" a month of meds before my extension came through. Try not to worry, and keep working on that Roche gal!
Sounds like you have found an ally in the Roche supervisor, I would keep working on that angle. I know it's tough and exhausting to be doing this now but it will be worth it in the long run.
I'm also G3, previous non-responder, was on a trial, originally scheduled to stop at 24 weeks, requested extension to 48 due to VL rebound at week 8, and got it through the trial sponsors. Took a wee while, but I got there.
The more people that SVR the better it is for the drug companies so I think they will be your best bet.
Better you are doing it now than at week 22 with only 2 shots in the fridge, imagine that pressure?!!
Luck!
Epi :)
I'm also G3, previous non-responder, was on a trial, originally scheduled to stop at 24 weeks, requested extension to 48 due to VL rebound at week 8, and got it through the trial sponsors. Took a wee while, but I got there.
The more people that SVR the better it is for the drug companies so I think they will be your best bet.
Better you are doing it now than at week 22 with only 2 shots in the fridge, imagine that pressure?!!
Luck!
Epi :)
see if this study helps
Increased SVR rate with 48 weeks' treatment and higher RBV dose in HCV genotype 2/3 patients without a rapid virologic response (RVR) treated with peginterferon alfa-2a (40KD) (PEGASYS) plus RBV (COPEGUS)
http://www.natap.org/2007/DDW/DDW_11.htm
Increased SVR rate with 48 weeks' treatment and higher RBV dose in HCV genotype 2/3 patients without a rapid virologic response (RVR) treated with peginterferon alfa-2a (40KD) (PEGASYS) plus RBV (COPEGUS)
http://www.natap.org/2007/DDW/DDW_11.htm
The studies that will show if geno 3s non-RVR benefit from extending to 48 weeks are being done now. Comeagain is in one of them. You don't want to wait until they are done to find out you did not treat long enough, do you?
What was your viral load at week 4?
I hope my words don't sound harsh, I just so want all non-RVR geno 3s to get long enough tx so they will clear. It broke my heart when Comeagain relapsed.
I think you have done great trying to fix this extension, and that Roche supervisor seems to be the right person to help you get your extension approved.
Good luck!
What was your viral load at week 4?
I hope my words don't sound harsh, I just so want all non-RVR geno 3s to get long enough tx so they will clear. It broke my heart when Comeagain relapsed.
I think you have done great trying to fix this extension, and that Roche supervisor seems to be the right person to help you get your extension approved.
Good luck!
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