Aa
Boc/Epo study
Hello to all,
Tomorrow morning I go to get the preliminary blood; CXR; EKG; etc., work done to make sure I am good to go for the Boceprevir/EPO study. (God willing we are gonna KILL the nasty little HCV buggers!!!)
Anyway, I was told to write down any questions I may have and ask them at that time. I know to ask about some side effects, like GI issues, sleep issues, depression issues. And of course I want to know what they will do for me when something does happen outside the expected anemia.
But I wanted to ask those of you who have done TX if there is anything you can think of now that you wish you had asked before TX started? You are the EXPERTS! Thank you so much for your comments, in advance.
Tomorrow morning I go to get the preliminary blood; CXR; EKG; etc., work done to make sure I am good to go for the Boceprevir/EPO study. (God willing we are gonna KILL the nasty little HCV buggers!!!)
Anyway, I was told to write down any questions I may have and ask them at that time. I know to ask about some side effects, like GI issues, sleep issues, depression issues. And of course I want to know what they will do for me when something does happen outside the expected anemia.
But I wanted to ask those of you who have done TX if there is anything you can think of now that you wish you had asked before TX started? You are the EXPERTS! Thank you so much for your comments, in advance.
I appreciate you pointing out that everyone is different and that treatment affects each of us in a unique way.
I am happy to hear that you did not need the neupogen, and that you didn't suffer for months with diarrhea.
You didn't say how long it has been since you completed treatment or if you are SVR, but I hope all is well with you. Thank you for your comment.
I am happy to hear that you did not need the neupogen, and that you didn't suffer for months with diarrhea.
You didn't say how long it has been since you completed treatment or if you are SVR, but I hope all is well with you. Thank you for your comment.
Thanks for the comment Gee, I was unsure about the frequency of blood tests.
I do know that I am genotype 1a, and had a biopsy done last summer which said stage 0 grade 1, I think. I don't know how much trust to put in the biopsies, they only take a very small portion of liver cells in a particular spot which can clearly be misleading in my estimation. But still felt somewhat relieved by that.
Viral load was over a million almost a year ago, so I know that I am in the mid range for that, but I think the only reason to know that # is as a starting point for when treatment starts.
I do hope you will keep me updated with your progress as you will be starting before me.
This forum is so wonderful, I will be coming here often during treatment I'm sure.
I do know that I am genotype 1a, and had a biopsy done last summer which said stage 0 grade 1, I think. I don't know how much trust to put in the biopsies, they only take a very small portion of liver cells in a particular spot which can clearly be misleading in my estimation. But still felt somewhat relieved by that.
Viral load was over a million almost a year ago, so I know that I am in the mid range for that, but I think the only reason to know that # is as a starting point for when treatment starts.
I do hope you will keep me updated with your progress as you will be starting before me.
This forum is so wonderful, I will be coming here often during treatment I'm sure.
FYI--I was in a boceprevir trial and I did not need neupogen nor did I have months of diarrhea. Not saying I didn't have sx, but not those.
Newleaf's translation of 'kick your butt' for 'rude' is a good description of the effects of Peg to me. Pegasys did somewhat less 'buttt kicking'. But, it's kinda like asking one which is better; a kick in the head or a kick in the 'nads.
Splendid response, THANK YOU!!! This gives me a wonderful start and is greatly appreciated!
I will have to get back with you on the Epo questions. Don't know when or even if I will be in the arm getting it, and also don't know if they give it there, or if I take it home. I will do my best to find out and keep everyone posted.
I feel just a little overwhelmed when I see what some are going through with side effects, but I am determined to learn as much as possible about this stupid virus and the treatments so that I can perhaps help others as all of you have helped me.
Thank you.
@jusjames; Thank you for the well wishes. It was nice of you to post. :)
@FIguy; Too funny about the parking! Good questions all, you are a peach.
@nygirl7; Wonderful advice about the notebook! I will take one. Thank you.
@can-do-man; I'll be sure to ask about cbc's AND pcr results! Great tip!
@rockerforlife; Congratulations!! What an encouragement! Keep us posted!!
@newleaf09; I will call my insurance provider tomorrow about the neupogen, and will definitely ask about the diarrhea complication. Appreciate your comments!
I will have to get back with you on the Epo questions. Don't know when or even if I will be in the arm getting it, and also don't know if they give it there, or if I take it home. I will do my best to find out and keep everyone posted.
I feel just a little overwhelmed when I see what some are going through with side effects, but I am determined to learn as much as possible about this stupid virus and the treatments so that I can perhaps help others as all of you have helped me.
Thank you.
@jusjames; Thank you for the well wishes. It was nice of you to post. :)
@FIguy; Too funny about the parking! Good questions all, you are a peach.
@nygirl7; Wonderful advice about the notebook! I will take one. Thank you.
@can-do-man; I'll be sure to ask about cbc's AND pcr results! Great tip!
@rockerforlife; Congratulations!! What an encouragement! Keep us posted!!
@newleaf09; I will call my insurance provider tomorrow about the neupogen, and will definitely ask about the diarrhea complication. Appreciate your comments!
FIGuy - Blood work is every other week to test for hemoglobin. Could you please share the differences in side effects for Pegasus vs PegIntron.
I am through all the screening for this trial and as each result came in the trial study coordinator emailed the results. She did state at our first meeting all prior test results would be handed to me at the start of each subsequent meeting. All records are released, if you want them. My screening was on a Friday and all blood results (except Genotype and PCR) where released to me on Monday.
Positude - you should have results by Friday. The most important is your hemoglobin < 15.0.
I am through all the screening for this trial and as each result came in the trial study coordinator emailed the results. She did state at our first meeting all prior test results would be handed to me at the start of each subsequent meeting. All records are released, if you want them. My screening was on a Friday and all blood results (except Genotype and PCR) where released to me on Monday.
Positude - you should have results by Friday. The most important is your hemoglobin < 15.0.
I was referring to the side effects of Pegays vs. PegIntron. I found Pegasys to be much less rude. The effectiveness is similar.
flguy, studies found pegasys and pegintron equal in performace (was it the IDEAL study?).
All excellent questions above. Go ahead and clear neulasta (neupogen) with your insurance company, since boceprevir reduces both hemoglobin and neutrophils. They will not provide a neutrophil rescue drug; they will dose reduce interferon if you can't get the rescue drug on your own. Interferon reduction is not a worry after you, but will make you anxious if it happens before you clear the virus (PCR undetectable).
I was in last boceprevir trial and had diarrhea that lasted long after TX ended. I would ask for help in managing it if I were you, since I think it caused nutritional malabsorption problems with me. See if they will let you do something simple like use pepto bismol or prescribe lomotil or other anti-diarrheal. Don't just accept it as a side effect.
They will prescribe anything you need while you are in the trial and if you have any issues that require other medical consultation, they will pay for it (though you will go to doctors in their system). They will not pay for a psych consult, though they will prescribe anti-deppressants (it's understood that that is a side effect of interferon which you were already informed about). I usually picked up copies of my last bloodwork results at the following visit.
I'm also very curious about how they will handle the epo shots. Will they want you to do them in clinic so they can verify or send it home with you like they did in my trial? I sure hope you get in the epo arm but theoretically, your hemoglobin should not go down until after you start the boceprevir at 4 weeks, and if you clear early on the boceprevir (many clear in the first 4 weeks after it's started) you should not have any worries about reduced riba reducing the effectiveness of TX and reduced riba will do the hemoglobin job just as well as epo.
All excellent questions above. Go ahead and clear neulasta (neupogen) with your insurance company, since boceprevir reduces both hemoglobin and neutrophils. They will not provide a neutrophil rescue drug; they will dose reduce interferon if you can't get the rescue drug on your own. Interferon reduction is not a worry after you, but will make you anxious if it happens before you clear the virus (PCR undetectable).
I was in last boceprevir trial and had diarrhea that lasted long after TX ended. I would ask for help in managing it if I were you, since I think it caused nutritional malabsorption problems with me. See if they will let you do something simple like use pepto bismol or prescribe lomotil or other anti-diarrheal. Don't just accept it as a side effect.
They will prescribe anything you need while you are in the trial and if you have any issues that require other medical consultation, they will pay for it (though you will go to doctors in their system). They will not pay for a psych consult, though they will prescribe anti-deppressants (it's understood that that is a side effect of interferon which you were already informed about). I usually picked up copies of my last bloodwork results at the following visit.
I'm also very curious about how they will handle the epo shots. Will they want you to do them in clinic so they can verify or send it home with you like they did in my trial? I sure hope you get in the epo arm but theoretically, your hemoglobin should not go down until after you start the boceprevir at 4 weeks, and if you clear early on the boceprevir (many clear in the first 4 weeks after it's started) you should not have any worries about reduced riba reducing the effectiveness of TX and reduced riba will do the hemoglobin job just as well as epo.
I was in the BOC RESPOND 2 trial...i had very mininal problems,you are lucky to get in.Still SVR after 6 months...i go for 2 more PCR`s to make sure im clear,paid by the BOC people
Was in the phase 3 boceprevir trial, this one sounds about as good. I would want to know if they give you copies of all cbc's including you pcr results...... Good luck sounds great.
FLguy.......... Do they validate parking? good one
cando
FLguy.......... Do they validate parking? good one
cando
Make sure you have a little notebook to keep all your questions and answers in. You will be shocked at how much you forget as soon as you walk out of the office. It's some strange doctor amnesia I swear!
Also, get a folder or binder and ask him if you can have copies of all the test results that they'll let you have. It helps when you can read those things yourself!
I don't know much about trials and I am kind of forgetful - what level did they say they'd let you have epo at? It wasn't some crazy number like 8 right (saw that recently from someone and ouch - can relate to the hell that is a hemo that low).
Will they let you have neupogen if your white blood cells should get whacked out too?
GOOD LUCK TOMORROW.
Also, get a folder or binder and ask him if you can have copies of all the test results that they'll let you have. It helps when you can read those things yourself!
I don't know much about trials and I am kind of forgetful - what level did they say they'd let you have epo at? It wasn't some crazy number like 8 right (saw that recently from someone and ouch - can relate to the hell that is a hemo that low).
Will they let you have neupogen if your white blood cells should get whacked out too?
GOOD LUCK TOMORROW.
This study is a heck of a good deal. Everone gets the BOC and a 50-50 chance of EPO if needed. The only small downside is theat they use Pegintron and not Pegasys. Afterall, it is a SCH deal. But, large population in a bunch of sites in Phase 3 trial - got to like it.
If you are in the EPO arm will you self-administer the EPO or will you need to go to the Trial Site? How frequent are the CBC's to get a hemoglobin reading? What happens if white cells (ANC's) tank whether in the EPO arm or in the BOC/SOC arm? Do they validate parking?
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