Aa
Treatment protocols
Hi all,
I was talking to my friend and nurse from Drug company. She deals with only Hep c and hep folks.
I am due the results in of my 12 week VL. my Doc and I have already agreed to go 24 weeks regardless of results. But she told me somethings that have been being discussed in her company by their researchers.
I thought I would share, obviously I am not quoting this as gospel, nor am I defending it, so don't shoot the messenger!
This is concerning hep c
!. They are no longer going to be going by log drops, Log drops may or not be effective tools in UND
2. They say if you are not und by week 9 and 14 (different from from 4 and 12) Then UND chances are not good.
3. My question to her was "If that is so, what about slow responders, people like NYG who did not UND till week 24? how would measure that?
4. they are discovering that the week, ie 48 or 72 protocols because it is a virus should not all be treated equally, that GIs should be treating each person individually.
The last one I agree with!
We also spoke about Alinia, Here is the problem, Alinia has not been approved for Hep C, So while most insurance companies will cover for them for use in parasites, they will not for hep c.
I asked then why will they let Infergen and say procrit, neither have been approved for HEP C by FDA.
The difference is they are both well known, Alinia does not have the track record for use in this area.
So looks like for most of us, the only way to get it now other than pay out of pocket is to try and get in a study.
Again this is not gospel, this is just the direction her company sees the txing and protocols going.
Deb
I was talking to my friend and nurse from Drug company. She deals with only Hep c and hep folks.
I am due the results in of my 12 week VL. my Doc and I have already agreed to go 24 weeks regardless of results. But she told me somethings that have been being discussed in her company by their researchers.
I thought I would share, obviously I am not quoting this as gospel, nor am I defending it, so don't shoot the messenger!
This is concerning hep c
!. They are no longer going to be going by log drops, Log drops may or not be effective tools in UND
2. They say if you are not und by week 9 and 14 (different from from 4 and 12) Then UND chances are not good.
3. My question to her was "If that is so, what about slow responders, people like NYG who did not UND till week 24? how would measure that?
4. they are discovering that the week, ie 48 or 72 protocols because it is a virus should not all be treated equally, that GIs should be treating each person individually.
The last one I agree with!
We also spoke about Alinia, Here is the problem, Alinia has not been approved for Hep C, So while most insurance companies will cover for them for use in parasites, they will not for hep c.
I asked then why will they let Infergen and say procrit, neither have been approved for HEP C by FDA.
The difference is they are both well known, Alinia does not have the track record for use in this area.
So looks like for most of us, the only way to get it now other than pay out of pocket is to try and get in a study.
Again this is not gospel, this is just the direction her company sees the txing and protocols going.
Deb
Aww thank you! I am blushing.
I am not a hero nency, just stubborn, just a woman trying to get through life.
You have not been silly! Not at all. Fear and pain are relative to the person who carries it. You can't compare it to anothers, but you do have to try, and I think have responsibilty to try and ease others pain.
Thank you again Nency for your kind words, they truly touched me.
Deb
I am not a hero nency, just stubborn, just a woman trying to get through life.
You have not been silly! Not at all. Fear and pain are relative to the person who carries it. You can't compare it to anothers, but you do have to try, and I think have responsibilty to try and ease others pain.
Thank you again Nency for your kind words, they truly touched me.
Deb
Dear Deb, after all Jim's and yours conversation as above, I found out you are real hero!
At this time you are being treated 3rd time, and you still so nice and optimistic about it! From now on I will always remember that, and I will stop being a baby about my fevers! From all my heart my very best to you and your story really made the difference in what I feel now!
Nency
At this time you are being treated 3rd time, and you still so nice and optimistic about it! From now on I will always remember that, and I will stop being a baby about my fevers! From all my heart my very best to you and your story really made the difference in what I feel now!
Nency
No, if I do go UND this time tx, will continue well beyond week 24. If it doesn't then I will stop then.
Just to make sure I am not a slow responder. If I do not drop enough, then it will be obvious, I am a non sresponder to Infergen.
This is my 3rd tx.
I have been looking for heptologist, in my area, Cirque has passed on some names to me who are using Alinia.
i am waiting for a response from them.
Thanks again
Just to make sure I am not a slow responder. If I do not drop enough, then it will be obvious, I am a non sresponder to Infergen.
This is my 3rd tx.
I have been looking for heptologist, in my area, Cirque has passed on some names to me who are using Alinia.
i am waiting for a response from them.
Thanks again
Honestly, I'm not up on the Infergen protocols. And I also believe in individualized treatment like your doc suggests. However, at least with SOC, individualized tx to a large part means tracking tx response, i.e VL and adjusting drugs and/or tx length according. For example, RVRs sometimes treat 24 weeks (shorter course); UND at week sometimes tx 48 weeks; and EVRs (two logs by week 12) sometimes tx 72 weeks.
In your case an adjustment was apparently made at week 4 because of lack of desiired viral response. But why only 24 weeks based on no RVR.
Personally, I wouldn't let it slide with the doctor telling me that she's treating me individually. I would ask on what basis -- either what logic and/or studies and/or clinical experience -- she is making the decision to treat 24 weeks? And personally, given the importance of that decision plus factoring in that this is your 2nd tx -- I would get at least one outside consult from another hepatologist who has a different hopspital affiliation.
-- Jim
In your case an adjustment was apparently made at week 4 because of lack of desiired viral response. But why only 24 weeks based on no RVR.
Personally, I wouldn't let it slide with the doctor telling me that she's treating me individually. I would ask on what basis -- either what logic and/or studies and/or clinical experience -- she is making the decision to treat 24 weeks? And personally, given the importance of that decision plus factoring in that this is your 2nd tx -- I would get at least one outside consult from another hepatologist who has a different hopspital affiliation.
-- Jim
The part of my answer is that I have always been very aggressive with treatment. This time I am not feeling very positive about Infergen. On the other side I posted my CBCs, and some concerns. As I said still waiting for VL results.
Deb
Deb
You are very welcome,
I am on Infergen, and no my VL actually went up at 4 weeks. I was only doing three shots a week and 1000 ribo daily. Now I am doing daily infergen.
So that is why 3 more months, I am expecting my week 12 Vl results this week. We are going three more months, because we basically started over, with daily infergen.
Basically she said they are going more in the direction of not following SOC protocols for every one, that they are seeing that with certain people, they should not follow protocols, so should be treated indvidually.
I am not sure if she meant for relapsers, non responders or all.
Hope that clarifies a bit
Deb
I am on Infergen, and no my VL actually went up at 4 weeks. I was only doing three shots a week and 1000 ribo daily. Now I am doing daily infergen.
So that is why 3 more months, I am expecting my week 12 Vl results this week. We are going three more months, because we basically started over, with daily infergen.
Basically she said they are going more in the direction of not following SOC protocols for every one, that they are seeing that with certain people, they should not follow protocols, so should be treated indvidually.
I am not sure if she meant for relapsers, non responders or all.
Hope that clarifies a bit
Deb
Thanks for sharing.
One thing that stuck out is that you and your doc have decided to treat 24 weeks no matter what, if I read you correctly.
I'm certainly not adverse to the 24-week short-course for geno 1's, but all the studies I've looked at minimally require UND at week 4, and at least some of them also require a low pre-tx viral load -- under 600,000 IU/ml, if I remember correctly. So that begs the question did you have a week 4 test and were you UND? If not, what is the reasoning to go 24 weeks no matter what? Perhaps you have very minimal liver damage (stage 0 or 1) and want to buck the odds? Or maybe that's all you think you can handle because of sfx? But again, unless you were UND by week 4, while I don't know off hand what your odds are for SVR (they're probably avail somewhere), I don't think they're good at all with only 24 weeks.
Also, could you re-word #4, in your post? Couldn't understand it.
Thanks.
-- Jim
One thing that stuck out is that you and your doc have decided to treat 24 weeks no matter what, if I read you correctly.
I'm certainly not adverse to the 24-week short-course for geno 1's, but all the studies I've looked at minimally require UND at week 4, and at least some of them also require a low pre-tx viral load -- under 600,000 IU/ml, if I remember correctly. So that begs the question did you have a week 4 test and were you UND? If not, what is the reasoning to go 24 weeks no matter what? Perhaps you have very minimal liver damage (stage 0 or 1) and want to buck the odds? Or maybe that's all you think you can handle because of sfx? But again, unless you were UND by week 4, while I don't know off hand what your odds are for SVR (they're probably avail somewhere), I don't think they're good at all with only 24 weeks.
Also, could you re-word #4, in your post? Couldn't understand it.
Thanks.
-- Jim
Thank you everyone for your comments on my fevers, I hope it is just a drug related fever, but I am concerned about it because it is not the beginning of Tx anymore.
Dear Deb, I hope you are not upset that everybody kind of focused on my fevers more in your testimony instead of having discussions about what you find out from your nurse. I am sorry if I interfere in any way. I actually, found it very helpful and interesting.I just want to clarify, if your doc wants you to stop tx at 24 weeks or he wants to continue till 24 weeks in case if 12 weeks vl+ ( god forbid) ?
Sincerely,
Nency
Dear Deb, I hope you are not upset that everybody kind of focused on my fevers more in your testimony instead of having discussions about what you find out from your nurse. I am sorry if I interfere in any way. I actually, found it very helpful and interesting.I just want to clarify, if your doc wants you to stop tx at 24 weeks or he wants to continue till 24 weeks in case if 12 weeks vl+ ( god forbid) ?
Sincerely,
Nency
Running fever can be normal. Sometimes to 101. especially at the begining shots. I would get the worst of this at shot time. Doc said just to take the tylenol before your shot and then as needed. Get worried if it gets higher and stays higher. Other than that you will see the 101 temp now and again. Tx can be very trying to the mental and emotional state of mind. I named my days: THE GOOD, THE BAD AND THE UGLY!!!!! LOL I will be doing my year post in a few days. Was suppose to go before I left for vacation and got lazy and did not go. So next week when I get back I will go.
Good Luck with tx.
Happy Valentines
Cajun
Good Luck with tx.
Happy Valentines
Cajun
Hi Nency,
I just did shot # 6 tonight. I have also been running a temperature for the past few weeks - every day it goes up to 101 or 101.5. I have been taking tylenol. I asked my doctor about the fever, but he did not think anything about it. I was wondering if you doctor had said anything about it. I hope you are feeling better. Thanks. GB
I just did shot # 6 tonight. I have also been running a temperature for the past few weeks - every day it goes up to 101 or 101.5. I have been taking tylenol. I asked my doctor about the fever, but he did not think anything about it. I was wondering if you doctor had said anything about it. I hope you are feeling better. Thanks. GB
Thanks, nice to hear from you also!
Got all test results back and all is well. Just tnow waiting on the PCR, VL results. Friday maybe?
No, Sorry nency I didn't, I am 1a, so tend to concentrate on that mostly.
I agree about no matter what the happiest day is when this is done!
thanks Nency, I wish you also a happy valentines day and happiness as well!
You are such a kind person, you are always so nice to read, Be well and take care!
Deb
Got all test results back and all is well. Just tnow waiting on the PCR, VL results. Friday maybe?
No, Sorry nency I didn't, I am 1a, so tend to concentrate on that mostly.
I agree about no matter what the happiest day is when this is done!
thanks Nency, I wish you also a happy valentines day and happiness as well!
You are such a kind person, you are always so nice to read, Be well and take care!
Deb
Glad to hear from you again, how is everything with you, how was all your tests that you were worried before? I wish you good luck and UND on 12 weeks VL, Did you ask your doc by any chance about 24 weeks Tx for 1b? I am very interested about that, because I am feeling worse everyday( 6 weeks 101 temp), now week 18, and I am waiting for my 24 week as the happiest day of my life no matter what.
I would like to wish you Happy Valentines Day and all happiness in the world!
Nency
I would like to wish you Happy Valentines Day and all happiness in the world!
Nency
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