13 replies to this topic

[scuba]

Is there a better time of day to take a one tablet Sprycel in order to minimize the headaches that are surely to come?

When do you take your Sprycel?  in the morning?  or in the evening?  (I know some have to take it twice a day - so this question applies to the one tablet folks).

I start Sprycel either tonight or tomorrow morning.  Boy am I looking forward to it.

[jrsboo]

Dear Michael,

I don't get the headaches.  I get tons of other side effects.  But I take the Sprycel just before going to bed, around 11 pm.  That was based on reading what other people had said about it here on the boards. 

Sprycel does not upset my stomach or give me the headaches, but I went straight on Sprycel at diagnosis, a couple of weeks before FDA approval of Sprycel for first line defense.  It seems the headaches are reserved for folks that were on Gleevec or Tasigna and switched.

Not to scare you, as I am ridiculously sensitive to drugs and have the devil of a time just using over the counter medication, I do experience tongue lesions, brain fog which as turned more into distractedness,  there was a lot of bone pain (which onc said was the drugs cleaning out my bone marrow), shortness of breath (not pleural effusion, had that tested six ways to sunday), loss of apetite, insomnia, a weird burning sensation in my feet when I try to go to sleep, hair loss, amazing fatigue in the beginning, but this is getting better, I just developed a body sized rash with what I would otherwise classify as prickly heat, but it is taken to the next level and I am on Prednisone this week.  The prednisone has the wonderful effect of giving me energy, but also makes me nuts. 

Sigh. 

But hey, no headaches!  And my CBC numbers dropped like a stone back to normal ranges in 2 weeks!

Best of luck, and please ask me anything else you want to know about Sprycel.  I have only been on it since September 30, 2010.

Caroline

[scuba]

Thanks Caroline!

I have been off Gleevec for more than six weeks - so maybe I just might escape the headaches.  As for the other side affects - I did not really have that many with Gleevec.  A bit of the fatigue, minor rashes that came and went.  If Sprycel does the same - then I will be fine.  My main concern is with myelosuppression - and in that regard Tedsey is my inspiration.  If I can go on Sprycel and have no significant myelosuppression, then I will be in good shape.  I fully expect the Sprycel to hit the CML better than Gleevec ... although Gleevec put my numbers into the normal range (CBC) in less than two weeks just like Sprycel did for you ....then lower, lower and lower.

So the new road journey begins - again.  I feel like I am just starting.  I even had a series of blood draws to establish a new baseline.  It will be from this point (FISH/ PCR) that my progress will be measured.

I may take the first pill tonight.   Yum.

[simone4]

Michael, this has been a frustrating journey for you so far, so I

am sending good thoughts your way that Sprycel will make

your life easier. Good luck on your new journey.

Simone

[Tedsey]

Michael,

Good luck!  May the Sprycel do the trick.  It appears after a few months on it, my WBC have gotten a bit better.  My ANC still hangs about 1.0, but that is decent.  The only problem that I have had is lower PLT on Sprycel.  I stay at 20-30.   Side effects have been minimal (if I can really peg them as being caused by Sprycel and not getting older).  Sending you my best wishes.

Tedsey

[jrsboo]

Good Luck Michael!!!

Keep me posted on how you do!

Caroline

[scuba]

Well ... I am officially on Sprycel.  I just took the 70 mg pill at 9:00 p.m. Central time.

I'm back in the club.

[Marnie]

Hey, Michael. . .I'm scheduled to join the club shortly.  Seeing the doc tomorrow and will get started on Sprycel (I think) as soon as the red tape is worked through.  I will look forward to hear how it goes with you.

Marnie

[scuba]

How long after you started taking Sprycel did you start to have the headaches?

Is it within 12 hours of taking your first pill ... or does it take days to set in?

[ChrisC]

Hi Michael,

Welcome to the club, and may you be pleasantly surprised by having no headaches at all, and an amazingly swift trip to (and maintaining of) PCRU.

Just to say that headaches don't happen to everyone, even those of us who switched from Gleevec to Sprycel at some point. Count our blessings! But if we expect them, how much more likely are we to find them? I don't know. But I didn't expect anything and didn't find anything, other than fatigue and this and that over the past 20 months on it.

What did surprise me a lot was my PCR result four months after switching: PCRU. And still maintaining it (that's the drug, not me doing anything). My new normal is a much more simple life, and there's a lot to be said for it — well that's all I have to say about it, actually.

I do enjoy showing up in life each day: a gift that keeps on giving. Hooray for TKIs!

All the best,

ChrisC

[scuba]

Thanks Chris for the uplifting note !

Did you have any myelosuppression at all - any drops in WBC's then recovery to normal while using Sprycel?

What dosage are you taking?

[VickiW]

Hi Michael!

hope your transition goes as smoothly as mine did  As for the headaches and muscle/bone pain.  You probably already know it hits within the first 24 to 48 hours.  For most of us folks it usually lasts about 2 weeks (in my case much less).  The intensity varies but from what I heard from others when I switched, the first hit is the worst and then it tapers begins to taper off.  Seems to depend on the individual of course on how fast.  As for me, I only had the really nasty headache for about 2 days and then it began to let up.  I only had the other pains for about the same period and only got the nausea the first 2 doses.  (I am on once a day too).  I have been on Sprycel now a little over a year and a half.

Good luck with the new road,

Vicki

[scuba]

Thanks Vicki ....

I've now been on Sprycel more than 48 hours - two doses and .... nothing.  No headache or any other sign that I am taking this drug.

And I still have my wine.  I did notice a bit of "tingling" in the toes this morning, but who knows what that is from.  I don't think it's Sprycel.

Zero on nausea.  With Gleevec, if I didn't eat properly while taking the pill - I would feel it (not terrible, just uncomfortable).  With Sprycel, it doesn't matter.

I take the pill around 9:00 p.m. and that's it.

I believe my lower dose at 70 mg. is probably why I don't feel anything.  Hopefully, the CML is getting hit and my normal cells are not.

If I don't suffer myelosuppression with Sprycel, I am sure they will want to increase the dose to 100 mg.  Then I might feel something.

So far so good.

[Susan61]

Hi Michael:  I wish you the best on your switch to Sprycel.  I know how hard you have been trying to find the right way to go with your treatments since diagnosis.

I have a friend who I talk to once in awhile, and she has been on Sprycel for quite a few years now.  She said she is doing much better with it, then she did with the Gleevec.

Your in my Prayers

Susan