Another R1626 started tx

I just wanted to let you know that I started tx yesterday morning.  I finally got my the baseline I've been wanting and I'm 2.1mil IU/ml.  Now I know.  From now on, results will not have a ? after it in my mind now and I'm grateful for that.  I'm also NOT pregnant and I'm grateful for that too. ;->

I did my own first injection but with a great deal of guidance from the study nurse.  Took me a few tries to get the air bubbles out of the syringe but the actual injection didn't hurt at all, I was surprised. And I was glad to have done it myself. The next ones will be easier as a result.  Thinking about it is definitely harder on you than actually doing it.

So now I have these three bottles marked X, Y and Z with horse pills in them.  Man, they are huge!.

They did an EKG yesterday, will do another one this week.  They are measuring for a particular heart rhythm and watching for arrythmia.  (sp?)  Measuring from the QT to the QTa (I think I have that right) for those that are interested in those things.

No side effects so far that I can tell.....and we shall see.

I go back every week for the next three weeks and will get a quant VL each time.  

The study nurse is fantastic.  She answers everything I ask if she knows and she knows a great deal.  I like her alot.  We get along well so far.

I'm feeling pretty good mentally.  She asked me if my heart rate is always that low.  I felt good about that, particularly since I know the night before was a real rollercoaster mentally and emotionally.  I'm glad she didn't take my heart rate then!!

A friend of mine helped me to put it in perspective...he said, this is something to get psyched up about, not psyched out about.  And he's right.  Still though.. I thought "huh..YOU face 48 weeks of tx and see if you're still saying that... "  :)  It did shake me out of my scared mode though...felt like a needle stuck in a groove on a record and it gave me just the right mental jolt to get out of it.

Woke up Friday morning and it was "Game on!" mode .. and it's all good.  
(That's a hockey reference.... )

Thanks to everyone for all your incredible support in so many ways from the start of this journey for me.  I know I would not be nearly as prepared without the collective benefit of all of your support and knowledge and I humbly thank you very much, all of you.. and wish the best to all of you.

Trish

[links1999]

I've just finished my 2nd week in the R1626 study. It felt good to finally get started after so many weeks of waiting. Thats interesting that you've had no SE's. I had the flu syndrome after my first shot, but next to nothing after the 2nd shot. The worst thing for me are the pills. At times kinda makes me feel like a subtle current or sensation (unpleasant) is running thru me. At other times, not so bad.

Anyway, glad for you that its begun. Keep us posted on your labs. Unfortunately, I have to wait until Monday to get the 1st week VL, wasn't available as of yesterday. But I did learn that after one week my enzymes were in the normal range for only the 2nd time in the last 2 years that I've been getting that stuff tested. Best of luck to you.

[geterdone]

A friend of mine helped me to put it in perspective...he said, this is something to get psyched up about, not psyched out about.  And he's right.  

Absolutely! It is the only way your going to make through the next months ahead of you, working or not, and I say this because doing both for the past so many week was the only way I would have made it to the end. Keeping a positive attitude and having fun with the dilemma were in makes the time goes by quickly and before you know it your time is done, hell I’m actually going to miss the drugs kind of got use to them, LOL!

Congrats on starting!

jasper

[charm27]

Trish,
So glad you finally got started, sometimes that in itself is a challenge. Ok well your on your way now be positive and know that you will have your good days and maybe some bad. Wish you all the good luck in starting your tx.
Charm27

[dointime]

Glad to hear you've started well and feel good.  Every day that you feel good on tx is a bonus.

"So now I have these three bottles marked X, Y and Z with horse pills in them.  Man, they are huge!. "

So what's in the third bottle?  I know you get R1626 and riba but the third bottle - is that the trick one which might contain R1626 or might contain a placebo?  Somehow the details of these double-blinds fascinate me.  

dointime  

[Trish77]

links...as soon as I posted that I crawled back into bed and didn't move til early afternoon...so much for no sides!  Not serious though..just a little wobbly on my feet and slept hours today.  I feel a headache teasing at my temples so I've been sucking back the water to hold it off...so far so good.. still there but tolerable. I have an energy burst after sleeping so I'm taking advantage of it.  I'll be interested in how you're doing and how your labs go....best of luck to you too!  Nice to have another "guinea pig" in the crew. :)

Jasper...thank you so much for those words...to be able to laugh about this keeps me going and keeping psyched up will be important.  I've repeated that to myself a couple of times today.  It's like a prescription - "repeat as required"  lol  :)   Thanks Jasper.

Charm...thank you. That means alot.

Elaine...thanks for the hugs.  :)  I think I said that wrong.. an ECG, electrocardiogram.  They're measuring for a particular activity that, if out of whack, can lead to arrythmia, not in this drug only but in general.  So it seems as if they want to actively monitor that to determine if it's a factor or not with this drug.

[Trish77]

Riba is actually a fourth bottle.  The different dosages for the R1626 on the study are 500mg, 1000mg or 1500mg bid.  I'm guessing that they give us three so that we have no idea which one we're taking.  There's even a complicated formula for which bottle and in which order we do it if we have to cut back dosage at any time so that we won't be able to figure out which we are.  Fun, eh? :)

Details fascinate me too.  :)

[wyntre9]

GL with your TX.

[willing]

all the best - I think you're placing one of the best bets out there.

[Forseegood]

Happy Trails, least youre over the hump:)

[Mikkimoe]

Congrats on getting started - sorry your not feeling better, but that's good right? Is it a trial where you could possibly have a placibo?

Take good care of yourself - we're there for you!

[Trish77]

Thanks Wyn, Willing and Forseegood.  

Mikki...only placebo is for the trial drug, as there is one arm without it. There isn't a placebo for regular SOC.  The one arm has half the usual dose of INF but also has the trial drug to compensate.  I felt better towards dinner hour .. I walked downtown with a girlfriend to see a play and the cold winter air was great.  I feel clearheaded and good this morning...did my Sunday run, got in 9K this morning.  I doubt I'll get to keep that up all the way through and if my HGB drops, I'll have to be careful...but for today it was good to get out there for a run.  

Thanks for the support, Mikki...apprecated. :)

[jmjm530]

All the best with tx. Don't get too hung up about the "bubbles" if you can't get every last one out -- better a little bubble than some spilt peg ;) A sub q bubble or two won't cause any problems.

-- Jim

[StainedGlass]

Good to here your sx's have been relatively slight so far - and that you were able to do your run.  I still don't no how you do it, 9k in the winter cold.  11 years of hockey did my knees in on that front.
Yeh the trial pills are rather huge... but what about the nice blue beach bag!  I presume you got one of those? :)  Medi-Swag.
I await my 2nd week VR.  My study nurse said all my blood work was in range but I wasn't able to get a copy as my doc didn't put the results back in my file. I need to see the numbers!  It'll have to wait till next week.
Did they do the triple ECG for your baseline?  My nurse also commented on my heart rate readings - 58, 60 + 60 for the triple reading.  They also did an ECG on my second week visit.  Higher bpm at 68.  I didn't get a clear explanation on what exactly they are monitoring for.  She did mention that there haven't been any cardiac related sx documented with the trial drug.  May be just keeping the big picture through the study?
As you mentioned in your top post,  the hardest thing I find so far is the "facing 48 weeks" of this.  This is where we queue from the experience here (geterdone etal)
The puck has been dropped...
cheers
B

[dointime]

You are right on the money with collecting all your blood work reports.  I don't understand this but somehow there always seems to be a difficulty with getting a copy of these reports, and when you are feeling tired it's easy just to let it go.  But don't let it go because it could turn out to be really important to have them all.  You just never know what you might want to look back on.  

It is a year after my tx and I've just finished pulling all my old reports to see if I can track something back.  I missed a few because getting them was such an uphill struggle at the time, but I'm regretting it now.    

dointime

[Deb_c430]

Proud of you! Hope your feeling ok! Been thinking about you!  Hang in there! Stubborness is good in this situation!    
Take care

Deb

[Trish77]

B., no side effects of any kind today...kind of strange.  Running in the cold is exhilarating actually...and you simply dress layered and appropriately and it's all good.

Medi-swag...good industry term for it. :)  Yes, I got my big blue gym bag to me.  I'm not the one in Vancouver. :)  I know what you mean about seeing the numbers.  My study nurse is great...she offered me copies of everything before I even asked.  Yes, they did the baseline ECG and another one to come next week.  My impression is that it's not that this drug has any risks in that regard but that they need to prove it doesn't and if they don't measure for it, they can't prove it.  At least that's what I gathered.

I can't think about the 48 weeks as a whole, too much.  I'm wondering if you do your 60 laps the way I do my runs...I never think about the end point, only the next point..and when I get there, then it's the next goal along the way until finally..the end is in sight and it's just a matter of finishing by then.  So I'm just going to take this the same way.  I'm thinking my "next point" is that 4 week mark.

The puck has been dropped.. I like it. :)  

Deb...thanks for the cheering squad!!  I am feeling great actually.  I'll take it while it lasts. :) As for stubborness...well..I think I'm covered on that point..lol  :)  Hope your weekend was good.

Trish

[Wassup]

I've read all the other congrats, support and advice from every- one and I say ditto ditto ditto and ditto some more. You go girl. Get them cooties!!!  Many many hugs, Ant B

[Willy50]

Hey, I've been reading about this compound and it looks great.  I want to thank you for bringing your experience and info to us.  This is a polymerase inhibitor so if it is successful it may be one of the drugs that gets teamed up with protease inhibitors (such as telaprevir or boceprevir) down the road.

I wanted to give you a little "motherly" advice to perhaps back off on the running a leetle bit particularly in the early stages of TX.  My rationale;

1) Excessive excercise can diminish immune response.  Particularly in the first weeks and months of TX you want the utmost in immune response.  It's the whole point of taking interferon.  Our typical immune response is insufficient to cast out the virus.  We have to take drugs to put it into "overdrive".  What is too much excercise?  I do not know.  I only can say you want the best response you can provide.
     A footnote to this is that not only can excessive excercise diminish immune response but so can rapid weight loss.  I'm not saying that this will happen to you but it is not uncommon for folks on TX.  Were you to lose weight AND do a few marathons (  : )  ) you could damage the chances of a strong early response.
      How much is tooo much excercise while one is on TX and becomes anemic?  It could be a lesser amount of excercise could still stress the immune system.  Perhaps someone else can answer that; I'd speculate that it's speculative.  : )

2)  The more that you run the more that one tears down body tissue and the more requirements are made upon ones red blood cells.  I cannot say whether you will become anemic but it is not uncommon during TX.  IF you were to save yourself the little wear and tear you may be able to keep the blood counts up higher.  I just think of it as your body is normally in a state of equalibrium where you are using them up as you are making them.  Since hemolytic anemia is common with TX you may find it easier to "overdraw your account" at a time when you may be less able to replenish your stores.  What happens if your RBC counts drop too far?  Your trial dosing could be diminished or stopped.  I may be wrong either in theory or practice but I thought I'd put it out there for you to think about or to get feedback on the idea.  I'd be interested in reading studies on fitness and how it affects chemotherapy results.

By the way.......I am pro running.  I believe that through running one may build up ones cardiovascular system so as to have less problems with anemia during TX...... of course I may also be wrong there as well.

In any case good luck with the trial and I look forward to reading about yet another successful treatment for us all....and of course for you.

best,
willy

[Trish77]

Thank you for the motherly advice. :)  I have had similar said to me lately. I've been reflecting on this. Running is the best mental boost I have and will probably keep me off A/D's.  However.  If I miss RVR, I will probably blame it on the running if I keep it up without really knowing the impact.  Btw..at my distances, I ain't running no marathons. :)  That's going to have to wait til after tx.

I'll give you my study nurse's take on running....she said as my HGB levels drop, less oxygen in the blood, therefore less oxygen going to my heart.  She considers it a stressor.  I figured..well it's early days so my HGB levels are okay.  Then I started hearing opinions such as yours about the impact of exercise in early days of treatment.  

Thanks for chiming in.  As always...one is able to make better decisions taking all things into account and then deciding what sits best with one's self.

All in all, I've decided to lay off the running in early stages and then I'll see as I go along. I'll substitute other things into the mix instead.

I'm hoping for another successful treatment for all of us out of this too...it does look promising doesn't it.  

Take care, Willy.

Trish

[Willy50]

I know you live in Canada but what kind of enviroment are you running in?  It's been a hell of a winter.  I often work outside and it is one hell of a stressor; TX or no TX.   A 9K........ain't a marathon but probably ends up using up a solid 45-60 minutes depending on conditions.  I don't know how long it may take in Moose Jaw during a blizzard.  : )   Our streets and sidewalks have been impassible; and running implausible.

Sorry to nag at you about the possibilities involved with what could be over excercising.  I agree that it is good for ones mental and physical health.  I'm sure there is a happy balance; I'm not sure that medical science knows exactly where it is.

best,
Willy

[dointime]

There's just one thing about exercise -

When you get breathess from the anemia, do not fight it / push yourself through it.  There have been cases of heart attack from asking the heart to do something that it simply does not have the oxygen to do.

Well, I'm sure you must know this but maybe there are type A personalities out there who don't,

dointime.  

[Trish77]

It's been cold lately and very snowy here all winter...but highly irrational weather.  It was about -20 on Sunday when I was out, yesterday it rained and today it's back to biting cold again.  Yes, the road conditions are a bit of a challenge, what with ice patches, snow ridges and iced snow ridges after a nighttime freeze-up. Sometimes there's no running in a straight line and I pay more attention to the three feet right in front of me than the 20 feet ahead of me in those conditions....it's just another kind of challenge though because the whole idea is to get out there and do it regardless so you just take it head on.  Lots of times though the roads aren't bad at all and you get used to running across ice patches when you can't avoid them. I hit the rail trail though for that longer run...they keep that nice and clear and the only real hazard there is ice patches and when it breaks to go across a road or two, so it allows you the longer distance without as much hassle.  I do the shorter 5K runs on the roads.  Cold weather running is actually quite exhilarating.   Not much difference between that and other winter sports really .. if you're wearing the right gear, you're good.