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Pre trial Jitters
OK, as some of you know I am scheduled to participate in a trial for R7128. I have submitted all of my pre-trial screening tests and will get the results of a urine sample tomorrow. That will be the final screening test which is not a problem (looking for pre-existing kidney problems). I was thinking to myself I will wait about 2 weeks and then begin the trial that way I have time to get myself mentally ready for this.
When I called my trial coordinator she said it starts on Monday June 9th with 1st dose given on Tuesday (Yikes!!!). I was not expecting that and as it it draws closer I am getting the pretreatment jitters. I am actually not nervous about taking the trial drug and in fact I am excited about the chance to take it as I think this is going to be another strong contender in future treatment regimes. I am really nervous about the SOC that is given with it. I fully realize that all the future therapies whether Protease or polymerase inhibitors will be given with peg and riba as a triple therapy. I am just nervous about taking the peg and riba and all the sides that go with it.
Actually let me clarify that a little better. I know that I may or may not have bad sides from it but rather I am really nervous about "coming out of the closet" if you will. I as many of you have suffered in silence with my hepatitis c. I have only shared this with my immediate family. Now I am faced with the fact that it may become harder to keep my little secret a secret. Am I crazy for thinking like this?
I am well respected at work and we have some great and exciting projects planned this summer at work. I fear that I may not be able to really contribute. I am worried that I will not be as sharp as before and that really bothers me. The work I do is in the science research field and I need to be on my game. I will have to mentor to some students this summer. I fear that maybe I will be treated differently by my peers. I fear that people will notice that something is wrong with me. While these may be legitimate concerns I have I keep catching myself saying "I am not really that bad maybe I should just wait to treat" and asking my wife "You think I am doing the right thing?" I am sure this kind of last minute doubt is normal but I could use a little hepper to hepper feedback about now.
When I called my trial coordinator she said it starts on Monday June 9th with 1st dose given on Tuesday (Yikes!!!). I was not expecting that and as it it draws closer I am getting the pretreatment jitters. I am actually not nervous about taking the trial drug and in fact I am excited about the chance to take it as I think this is going to be another strong contender in future treatment regimes. I am really nervous about the SOC that is given with it. I fully realize that all the future therapies whether Protease or polymerase inhibitors will be given with peg and riba as a triple therapy. I am just nervous about taking the peg and riba and all the sides that go with it.
Actually let me clarify that a little better. I know that I may or may not have bad sides from it but rather I am really nervous about "coming out of the closet" if you will. I as many of you have suffered in silence with my hepatitis c. I have only shared this with my immediate family. Now I am faced with the fact that it may become harder to keep my little secret a secret. Am I crazy for thinking like this?
I am well respected at work and we have some great and exciting projects planned this summer at work. I fear that I may not be able to really contribute. I am worried that I will not be as sharp as before and that really bothers me. The work I do is in the science research field and I need to be on my game. I will have to mentor to some students this summer. I fear that maybe I will be treated differently by my peers. I fear that people will notice that something is wrong with me. While these may be legitimate concerns I have I keep catching myself saying "I am not really that bad maybe I should just wait to treat" and asking my wife "You think I am doing the right thing?" I am sure this kind of last minute doubt is normal but I could use a little hepper to hepper feedback about now.
Thanks for the information. I will take it to heart as it is great advice. I am not sure with a trial if you are allowed to take this stuff pro actively or not but I will ask. As far as beginning it before the meds begin, it may be too late for that. I begin taking the meds on Tuesday. I will be staying at the Hospital for 14 hours while they draw blood every hour or so as part of the trial.
I know what you are talking about with the sleep. I have nights when I do not sleep well now (like last night thinking about this trial) and then I feel like dooty the next day.
I am planning on working toward a Thursday or Friday shot for just he reasons you stated. I have talked to my trial coordinator about this already. I have to start on a Tuesday because that is what the trial dictates but we will work toward getting it to a end of week shot.
I will definitely keep everyone posted about how the trial goes as I really think it is promising drug. I agree with Doing time. I also feel that this is the best polymerase inhibitor to come along. That is why I sought it out.
I am thinking of starting another thread even though there has been similar ones before concerning what to have on hand before TX begins. Feel free to chime in with any suggestions like you had above.
I know what you are talking about with the sleep. I have nights when I do not sleep well now (like last night thinking about this trial) and then I feel like dooty the next day.
I am planning on working toward a Thursday or Friday shot for just he reasons you stated. I have talked to my trial coordinator about this already. I have to start on a Tuesday because that is what the trial dictates but we will work toward getting it to a end of week shot.
I will definitely keep everyone posted about how the trial goes as I really think it is promising drug. I agree with Doing time. I also feel that this is the best polymerase inhibitor to come along. That is why I sought it out.
I am thinking of starting another thread even though there has been similar ones before concerning what to have on hand before TX begins. Feel free to chime in with any suggestions like you had above.
willing/chocolates...too funny!!
DS...I'd really think and pray for the best but pay attention to your body.
rest is the single most important factor. I was already on Ambien, and it stopped working...and now I am on Remeron as well but I am sleeping again. Nights I don't sleep well make days much much worse.
so a word to the wise...that I didn't take....but many suggested a mild antidepressant at start of tx could head off a lot...and since Remeron is one that helps you sleep but with no daytime drowsiness, and is more liver friendly than SSRI's that's what I'm on.
If you start getting really edgy you'll need something...and it takes weeks sometimes to get to effective dose or results...so that's why starting them with tx was suggested.
Folk in here know what they speak of..of course I thought I'd tough it out with good thoughts, positive attitude...etc etc...but when every cell starts going haywire you either have a plan B, or end in the soup.
I don't think sleep aides or anxiety drugs are considered rescue drugs the way procrit is..
so ASK....now for something you can take for sleep if you need it...and then if you do end up Riba wired or with flu symptoms, at least you can get anough rest.
plan your shots so that day 3 and 4 are on the weekends. Some people say the first day or two is hardest for them, but more say day 3 and 4 when the PegINF reeaches its highest level for the week is worst for them...so either take your shot thursday or friday..and avoid your sickest days being work days. Plan on a couple days of downtime most weekends. Don't be surprised if walking a block feels like walking a mile...just the fun of therapy.
Usually workers are supportive, but sometimes the ignorant can become fearful, so sometimes less info protects you, and them from themselves. One lady did loose her job due to a phobic coworker.
good luck with your trial keep us posted..it should be interesting, I remeber reading up on that one....who makes it again??
mb
DS...I'd really think and pray for the best but pay attention to your body.
rest is the single most important factor. I was already on Ambien, and it stopped working...and now I am on Remeron as well but I am sleeping again. Nights I don't sleep well make days much much worse.
so a word to the wise...that I didn't take....but many suggested a mild antidepressant at start of tx could head off a lot...and since Remeron is one that helps you sleep but with no daytime drowsiness, and is more liver friendly than SSRI's that's what I'm on.
If you start getting really edgy you'll need something...and it takes weeks sometimes to get to effective dose or results...so that's why starting them with tx was suggested.
Folk in here know what they speak of..of course I thought I'd tough it out with good thoughts, positive attitude...etc etc...but when every cell starts going haywire you either have a plan B, or end in the soup.
I don't think sleep aides or anxiety drugs are considered rescue drugs the way procrit is..
so ASK....now for something you can take for sleep if you need it...and then if you do end up Riba wired or with flu symptoms, at least you can get anough rest.
plan your shots so that day 3 and 4 are on the weekends. Some people say the first day or two is hardest for them, but more say day 3 and 4 when the PegINF reeaches its highest level for the week is worst for them...so either take your shot thursday or friday..and avoid your sickest days being work days. Plan on a couple days of downtime most weekends. Don't be surprised if walking a block feels like walking a mile...just the fun of therapy.
Usually workers are supportive, but sometimes the ignorant can become fearful, so sometimes less info protects you, and them from themselves. One lady did loose her job due to a phobic coworker.
good luck with your trial keep us posted..it should be interesting, I remeber reading up on that one....who makes it again??
mb
Thank you guys so much for the words of encouragement. I really need them. As the hour draws near I am beginning to get myself all worked up. I feel like just backing out as fear of the unknown is getting strong. So far I am holding my ground on treating.
There are times when I am know what I am doing is the right thing as I have thought this out very thoroughly. Hell last year I had my house on the market to try and move closer to work in anticipation of treating(I commute 60 miles each way). Unfortunately the housing market went belly up and could not sell my house (which is new). I have researched and studied, and watched and deliberately picked this trial. IT is just as I get close I am getting nervous and antsy. The old fight or flight thing is saying "run away". Like I said those words of encouragement are appreciated. My wife is scared for me too.
I am thinking right now that it is full steam ahead as planned and I will just get my head right. Thanks again.
There are times when I am know what I am doing is the right thing as I have thought this out very thoroughly. Hell last year I had my house on the market to try and move closer to work in anticipation of treating(I commute 60 miles each way). Unfortunately the housing market went belly up and could not sell my house (which is new). I have researched and studied, and watched and deliberately picked this trial. IT is just as I get close I am getting nervous and antsy. The old fight or flight thing is saying "run away". Like I said those words of encouragement are appreciated. My wife is scared for me too.
I am thinking right now that it is full steam ahead as planned and I will just get my head right. Thanks again.
Good luck and ditto all the above...for me its really been mind over matter. I feel as good as I think I do. I could really whine and feel sorry for myself and talk myself into feeling worse....or can can stay positive and by all means...try to have a sense of humor thru it all! You can do it!!! Aloha.......
Congratulations on your trial. I am pulling for you.
You know what? Let's just take it ONE DAY AT A TIME. To project into the future is overwhelming and worrysome. Trust that things are meant to be exactly the way they are and that you will NOT be given more than you can handle. Keep an attitude of gratitude that you are fortunate enough to be a part of this trial and trust that God will take care of the rest. All we have to do is our part. (the footwork)
Like Marcia said, I actually told my peers that I had fibroids on my liver and need to take medication that is very parallel to chemo, blah, blah, blah... They accepted it and didn't ask questions.
Best of Luck and I'll be watching for more posts from you.
Kelle
You know what? Let's just take it ONE DAY AT A TIME. To project into the future is overwhelming and worrysome. Trust that things are meant to be exactly the way they are and that you will NOT be given more than you can handle. Keep an attitude of gratitude that you are fortunate enough to be a part of this trial and trust that God will take care of the rest. All we have to do is our part. (the footwork)
Like Marcia said, I actually told my peers that I had fibroids on my liver and need to take medication that is very parallel to chemo, blah, blah, blah... They accepted it and didn't ask questions.
Best of Luck and I'll be watching for more posts from you.
Kelle
As to the fear of everyone knowing you have that "junky" disease, Popeye said it best.
I am what I am and I ain't know more.
Metalica sang it best.
So f 'n what.
Harry
I am what I am and I ain't know more.
Metalica sang it best.
So f 'n what.
Harry
I cannot really add anything, as all the good advice has been given.
If you are doing the right thing? Definitely you are. You are taking care of your health, which is one of the most precious things we have.
' I will have to mentor to some students this summer. I fear that maybe I will be treated differently by my peers. I fear that people will notice that something is wrong with me.'
Many heppers just tell people that they are on chemotherapy. You don't have to tell them what for, if it will make them think differently about you.
Hang in there and slay the dragon. We'll all be here if you need us.
Marcia
If you are doing the right thing? Definitely you are. You are taking care of your health, which is one of the most precious things we have.
' I will have to mentor to some students this summer. I fear that maybe I will be treated differently by my peers. I fear that people will notice that something is wrong with me.'
Many heppers just tell people that they are on chemotherapy. You don't have to tell them what for, if it will make them think differently about you.
Hang in there and slay the dragon. We'll all be here if you need us.
Marcia
Good luck to you and you're upcoming trial. If I were you I would always have a plan B prepared just in case things don't go as planned. Hope for the best, but be prepared for the worst. Hell you may come out of this and never need to use a plan B. Just have one on hand for every situation that you could possibly come up against, just in case. If you think of every situation that you could be in before hand, then you're covered. Like Sunday in the evening take time to think of the things that you have to do the following day. Im sure you'll be fine, keep us posted. God Bless
congratulations on the r7128 and all the best going forward. As they say, "tx is like a box of chocolates, you never know what you're gonna get". My suggestion would be to plan to leave yourself lots of breathing room. You may not need it all, but if things aren't going well, work expectations can add to the burden and be hard to jettison. Chances are that come Monday getting through this well may turn into the top priority. Wasn't it 4C that compared tx to getting on a roller coaster ride? Once you're go through the gate, best focus on holding on.
I think your concerns are very real. It might well happen that you go off your game at times. People may notice that you are not the same. You may find that you have no patience with the students that you are mentoring. You may have times when you just want to head for the hills and get away from it all. I think you would be in the minority of tx'ers if you get through it without any these things ever happening.
That said, you'll do what we all do once we're committed to treat, you'll muddle through. Just keep in mind that none of these situations will kill you, but the virus can if you don't treat.
For what it's worth I think R7128 looks like the best of all the PI's at the moment. Good luck and let us know how it goes,
dointime
That said, you'll do what we all do once we're committed to treat, you'll muddle through. Just keep in mind that none of these situations will kill you, but the virus can if you don't treat.
For what it's worth I think R7128 looks like the best of all the PI's at the moment. Good luck and let us know how it goes,
dointime
Well don't borrow trouble. I don't think you need to tell anyone anything at this point in time. Like you said, you may or may not have bad sides. So, for now, why don't you continue on with the attitude that you will not have them. No need in crossing a bridge before you get to it.
Good Luck whatever you decide to do!
Good Luck whatever you decide to do!
Thanks Copyman I wish you luck on your trial wih Teleprevir as that drug really looks good and is pretty far along. When do you begin your trial? Where is the trial being run from U Penn? (noticed you are also from NJ )
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