What the doctors said about missing the doses (and mutation)

[MelonLiver]

I just thought I would post what happened since I went to the hospital today and did the blood work, saw the study nurses and the head of the study (doctor)
Many people had a very passionate response, a few in particular that I wasn't overly thrilled with, but I appreciated all responses in the big picture.
In case anyone doesn't know who's reading this, I missed an entire day at the beginning of my treatment, which means I missed Ribavirin and a couple doses of Telaprevir.
I was told various things from keep on having faith, to you have absolutely no hope and should just quit now.

Basically I was completely honest and showed the study nurses what I had missed on my chart and said I was worried, I mentioned what had been mentioned here about the virus mutating, etc.

Now I want to be clear about this point first: I WAS very concerned and I did want peoples experience/opinions since I had no point of reference. Also, far from dismissing what people said, I simply said I would like to keep a positive attitude and believe that things will work out despite that obvious mess up (which I have taken many measures not to repeat)

With that said, as I had hoped and "believed" (as in, I want to believe it will work out) is that it is not the end of the world, there is no reason to be pulled off, they are not concerned about mutation, and this is NOT the first time someone has missed a dose(s) and still, every person they have had on the study who already finished (total of 7), are SVR @ 7months.

So I do not think it was at all bright, I was worried out of my mind, I never took for granted that things would be fine, or that they wouldn't tell me to stop, but I tried to have a positive attitude about what I couldn't change, and based on what I had understood, had a belief that things would continue as before, no need to stop, all being well with the Dr's and nurses, and me a little wiser and prepared.

For anyone who misses a dose, I would absolutely agree that you should let the people in charge of your trial know as soon as possible, but I wouldn't give up hope or let it worry you to death, even if some people here tell you you should be so, because I believe what we can do is make the best of right now, anything else is fairly out of our control.

FYI, the last study they did, had Telaprevir only twice a day, and every one of them are still "cured"
With that in mind, in the past study, missing the amount of time I missed would have been like missing 1 dose in the previous study (since they only took it twice a day), so I guess this explains why they may have a slightly different concern level where I am at.

That said, NEVER miss a dose, it's simply not worth the worry and stress.

Thanks to everyone who made supportive comments and told me not to give up, because I felt really sick and I started to think I should just stop taking the medicine if all was lost, or if I was going to be pulled off due to mutation anyway.
Fortunately I didn't listen to that little voice in my  head,  and I will report my blood work results when I get them for anybody interested in how my body responded to treatment even with the missed doses.

Good luck and courage to all

[Marcia2202]

come on guys...

let it go already.....

[NJDrummer]

Your original post started as saying, I missed many doses of my medication.
In which you then spent the rest of the day arguing that you didn't miss that much.  If you didn't miss that much, then why title your Question as missing many doses, what do I do?
People took the time out to give their opinions, which you asked for. You then got defensive on a lot of people for simply giving you opinions, which you asked for.  Rather than getting mad because you didn't like what some people said, you could have just listened to what people said and bring those concerns to your doctor.
No matter what the doctors say, you should always be concerned about missing medication, no matter how much or how little you missed.
With that being said, I am glad you are still on the medications, and I hope that you aren't so careless in the future with taking your medications when you are supposed to. Maybe next time you won't be so defensive just because you heard things you didn't want to hear.

[Marcia2202]

I have all my appointments and med times organized in my cell phone with alarms for everything. I take my riba at 7am and 7 pm. I even set alarms for when I have something cooking on the stove. Then I have my meds and supplements all in a pill organizer with 4 compartments per day. I have two of them so all my pills are organized for 2 weeks and there is always a full box. So far I haven't missed any at all.

Here is a good site for pill boxes   forgettingthepill.com

God bless,

Marcia

[Trish77]

I live alone and I am a scatterbrain.  It takes work for me to remain organized.  Some things I have to do the same way all the time or I won't remember so I put my car keys in exactly the same place every day when I come home...most of the time anyway.  

As for my meds, I take them with breakfast and with supper, it's easier to remember AND they are best taken with fat anyway, so even if my meal is icecream, it's taking it with something fat to eat.   I also keep a pill bottle in my purse with one full dosage of ribavirin with me at all times just in case I find myself stuck out somewhere and forgot to pack my pills.  So I pack a "travel" dosage all the time.  

My interferon injection is at the same time on Fridays and I've never forgotten it.  I had to do the injection in a restaurant bathroom once but have never forgotten my injection.  

I'm in a trial too, so I have to record everything in my diary ..but to be honest that doesn't mean I keep up with my diary very well when I get busy and then I have to play catch up so that's not as reliable.  I did buy a pill container but I don't use it.  Taking the pills with meals seems to be sufficient as it's a routine.  So some kind of routine that works for you, whether it's setting alarms and you take them to the alarm, but some kind of routine that works.  

Others will tell you what works for them and you will figure it out.  Good luck.

Trish

[Isobella]

Glad to see your post, I was worried about you.  So....when is shot #2?  I am guesing you may have already had it??? If so, how was the reaction?  

At my trial center, the drug diaries are mandatory so that helps keep up with it. But after a while, even that becomes a blind habit and you really have to stay on top of it (which would explain how I missed my dose in week 8)  Now I have all kinds of alarms going off all day long-drives my husband nuts, lol!

Wish ya the best and hope things stay on track for you and the sides are kind.

Isobella

[Trinity4]

Shot once a week -  pick the best day for you and keep that day until the end of treatment.  My desire to kill this virus is so great that each week I am eager to take the shot -  I don't like side effects but I know it's doing the job it's supposed to do.  Pills in the morning with breakfast -  pills in the evening with dinner.  
Melon is in a trial - more pills than SOC.  She had very unusual circumstances -  most people don't become that disoriented.  Injections most people do not forget - taking pills day after day becomes monotonous so a pill box with am & pm pills for each day is a great reminder.  Mine is on the kitchen table -  I eat and I take pills.  Visual for me at all times.  You can buy a watch with an alarm on it -  just set the times you want it to go off.  They are not expensive either.  It will become second nature to you.  If you are really concerned, perhaps your daughter will phone you daily until you become accustomed to taking the meds regularly.  Don't worry too much about it - you'll become a veteran of the treatment wars soon enough.  Good Luck
Trinity

[Trish77]

Melon,

Along with making sure your trial team is aware of all of this, which you've done .. what I was MORE concerned about and am still wondering about is what they said about the kind of reaction you had to your first injection such that you were unable to adhere to your dosages and were "out of it" for about 48 hours and slept for 24 .. did they have anything to say about that at all?   What's the proactive measure so that this doesn't keep happening?  

Trish

[nygirl7]

Melon has PM'd me several times and seems like a nice enough person - I was personally grateful that they took the time to reach out to me when at first they seem to think I was just being overly b*tchy, they realized later it was indeed concern. It was a nice step and appreciated.

I think with that said - we've had such very different information from other doctors (Ie: I remember one trial participant worried about missing one dose of riba because she took one twice by accident and would run out...and the nurse finding out that she'd screwd up and then would cut her out of the program that several people offered to send me some to send so that wouldn't happen)...but if this persons doctors didn't seem worried about relapse (I'm not sure if mutation is the same as relapse but whatever) then all they can do is make sure they don't miss anymore doses and go on with life.

IF ML doesn't succeed the answer will be apparent.  If they do then it won't have made a difference. Only time will tell now.

I would just caution anybody else out there to do what we all suggested on the first night after the first shot - set the alarms for the morning and later doses and make SURE someone is monitoring you.

Everybody reacts differently to the meds so you just have to take the most precutionary stance you can so you don't miss any of them and get the highest value odds that you can get.

Good luck Melon - we will be watching.

[CoWriter]

"there is no reason to be pulled off, they are not concerned about mutation,"

I would show them this study....


"The authors carefully describe the dynamics of HCV quasispecies populations during therapy. They show that RELAPSE related to selection of resistant variants mainly OCCURED IN PATIENTS WITH LOWER EXPOSURE TO THE DRUG.  Telaprevir HAD TO BE ADMINISTERED EVERY 8 HOURS PRECISELY, AT A DOSE OF 750 mg, to induce a sustained biphasic decline in viral replication. A HIGHER DOSE ADMINISTERED EVERY 12 HOURS, OR A LOWER DOSE ADMINISTERED EVERY 8 HOURS, WAS ASSOCIATED WITH FREQUENT RELAPSES OR WITH A LACK OF SECOND-PHASE DECLINE.  Both these phenomena could be due to selection of telaprevir-resistant variants."


For the whole study see:

http://www.ncbi.nlm.nih.gov/pubmed/17418174

[Trinity4]

Jmjm

Still, you seem bent on picking apart the advice you were given as opposed to thanking the forum in general for giving you a wake up call that you obviously needed. Of course, do what you want, but I suggest you take the opinions here for what they're worth and not grade them like a school teacher.

How true those words are -  It happens everyday -  good advice is given and it's misconstrued as insensitive or disrespectful.  Good advice is good advice -  whether it's given in the touchy feely mode or just straight up.  Thanks for pointing that out.
Trin

[CoWriter]

"FYI, the last study they did, had Telaprevir only twice a day, and every one of them are still "cured"

With that in mind, in the past study, missing the amount of time I missed would have been like missing 1 dose in the previous study (since they only took it twice a day)"

That's called rationalization.  The telaprevir dose for twice daily was 1125mg and the dose for three times a day is 750mg

So either way you missed taking 2250mg (since you said previously you'd missed taking any doses for one day).  

[Marcia2202]

Come on everybody.... lets just let it go...

[jmjm530]

My take is that you posted what I -- and others --  considered an alarming account of how you were handling treatment even though later it was modified somewhat -- but as someone else said -- not everyone is going to read the entire thread to find out that things weren't as bad as you initially said it was.  

Given what you initially said, people responded appropriately with both concern, compassion and suggestions on what you should do. Apparently this had some positive effect because you brought all this to the attention of your trial nurse and have taken steps for it not to happen again. Had you simply gotten a bunch of "don't worry, just don't let it happen agains", perhaps you would not have taken this as seriously as you have.

Still, you seem bent on picking apart the advice you were given as opposed to thanking the forum in general for giving you a wake up call that you obviously needed. Of course, do what you want, but I suggest you take the opinions here for what they're worth and not grade them like a school teacher.

-- Jim

[Bobby1952]

   Thats all you had to say. You could of put it in one paragraph instead of "9" of them.

  Sorry if I am not in the mood to read "WAR and PEACE". I read it already. Some people are so full of themselves that they just go on and on and on etc.

[MelonLiver]

It's you
Here is a cut and paste quote from above:

"With that said, as I had hoped and "believed" (as in, I want to believe it will work out) is that it is not the end of the world, there is no reason to be pulled off, they are not concerned about mutation"

I think that sums it up if you were looking for an answer. I'd be happy to add more detail, but only if you ask so I don't add to the "big long letter"

P.S. Read closely before you trash peoples post

[Bobby1952]

   Is it me or what ? You wrote a big long letter and didn't say anything ! What did they tell you about missing a days dose in the beginning. Was it as bad as you were told or not.

[Marcia2202]

Thank you so much for getting back to us... I was really worried about you... Not so much about missing the doses, but about you personally. Thank God it worked out well and I am praying for you to beat this dragon.

My offer still stand, if you need me to holler at you through the phone on shot days and after... I'll gladly do it. It would really be no trouble for me at all. I call Paris all the time, with my 2 sisters and my stepmom there.

Hugs,

Marcia