37 replies to this topic

[VickiW]

been on 100mg 1x a day for over 2 years.

[mikefromillinois]

Hello all,

After 2-3 months on Sprycel I have noticed a definite relationship between side effects and water/salt intake.  The days that my side effects were most apparent I either underhydrated or had salty foods shortly before.  If I stay plenty hydrated and stay away from salt my side effects pretty much disappear.  On days that I feel really good I am peeing a lot.  Maybe I'll look into getting some astronaut diapers.

Wishing everyone good health and many happy days...         Mike

[VickiW]

Hi Mike!

I totally agree.  Wish I had been smarter like you.  Took me almost a year on Sprycel to figure that out.

[scuba]

Vwoyak - It will be interesting to see what my results are after they take my blood and bone marrow fluid this Friday.  I know that Dr. Cortes is doing research on dose.  He has me at 20mg. to test that low dose can work very effectively.  The myelosuppression I suffered gives him the clinical cover to do this.  It could be I am just sensitive to Sprycel and it works better - but I suspect the Curcumin I am taking is enabling the low dose effectiveness.  We'll see.  M.D. Anderson wanted to know everything about my Curcumin protocol.

[mmdojr]

thanks mike. i was starting to think the lack of water could be the cause of how i feel.

dont feel bad vwoyak, it took me over three years to figure out when you take gleevec you need to wait to digest and then take the meds otherwise you feel the nausea.

it feels so weird to feel like this. i havent felt sick in more than four years.

i am going to tuff it out though and see if sprycel can be better for me

[mmdojr]

good. i believe it took me a good 2-3 years for my CML to become completely undetectable.

the numbers would go up and down till finally it became undetectable.

[SB3]

I've been on Sprycel for a month and discovered that the stomach-related side effects disappeared once I stopped eating anything after dinner (I take 100 mg with dinner). If I had anything to eat an hour or two later, I always ended up feeling nauseous. All that stopped once I stopped eating anything after dinner. I also had that constant fog in my head (although no headaches) but that seems to be gradually going away. Each day I'm feeling better and more energetic -- I think my body has finally found its equilibrium with the medication. So, give it time and hopefully your side effects will begin to abate as well.

[mmdojr]

thank you. I keep thinking to myself it will get better but the longer im at work the worse i feel. i have only taken one pill and it was yesterday at 3pm. I am not looking forward to taking it today. maybe with dinner this time. it would be so much easier if I could just l lay down all day.

it really is a hangover feeling. i never felt this with gleevec but then again I didn't have to work when I was first diagnosed.

[Lynne D]

Last week I took a trip to the west coast to visit Dr. Druker. I have reduced my Sprycel to 50mg. Even thought I am in and out of MMR and mostly in CMR he isn't concerned because on a 4 log scale when you look, it's not all that bad. Not to mention that he is more than willing to try Tasigna again if the lower dose of Sprycel doesn't work. He said since I've been relatively stable and not near blast then he is certain I won't have to worry about any mutation. He said some people are just extremely sensitive to tki's. I do feel better since the lowered dose but I am also no longer working which has helped tremendously also.

[mmdojr]

i always find it interesting when doctors prescribe a lower dose than what is recommended. my doctor has never suggested that.

so with one day on sprycel, i decided to wait a week free of gleevec and try sprycel again (as recommended by my doctor).

it was a rough 24 hours. but like you said, working ads so much more stress and energy loss when trying to get better.

does anyone recommend a natural pain killer that works as apposed to ibuprofen/acetaminophen? when i take these pain killers my liver panels just shoot up

[GerryL]

Sorry to hear you're suffering the Sprycel headache. From what I've read they are supposed to ease off in a week or two. I don't think there is much in the way of a "natural" pain killer you can take. There is something called Willow Bark, but it has side effects similar to Aspirin, which you haven't listed.

Only thing I can suggest is to apply some lavender oil around your temples and use either a hot or cold compress.

[Lynne D]

Yeah that headache really sucks. It's the band around the forward to the back of your head? I had it pretty bad for about 1 month, still had them 2nd month and now it comes and goes. Not much you can do, drink lots of water, I like to add lemon to mine because I am not a water drinker. As far as the dosage, I have had CML for 61/2 years so we kind of have an idea what my pcr has been doing. I am in no danger of mutation at this time, so playing with the dosage of the meds is easier for me to do.

[mmdojr]

thanks gerry, billie, and idagata.

it seems to be the norm and I will definitely be prepared when I start the sprycel in a week.

I think it may have been the lack of water. I am also one who will not drink much water but I am sure to have my two cups of coffee per day.

really the only hard issue was the headache. the fatigue was a little hard to deal with but the headache just killed me.

on a lighter note I think I am having less GI issues from being of all meds for four days now. oh how I wish I could be free of all meds forever.

thanks again guys

[mmdojr]

hello everyone,

Hope you Americans had a great Thanksgiving and hope everyone else is having happy holidays thus far.

so, I started sprycel again after waiting a week to come off of gleevec and I am so glad I did.

even the first day was nothing to complain about. I did wake up with a headache and decided I would take some ibuprofen. After that I was fine.

just about to hit a week of 100mg per day and I am doing great.

I do want to thank all who advised me to drink a lot of water. I am sure this is helping a lot.

So far no headaches, fatigue, swelling, nausea and everything else that comes with gleevec. I am also starting to get some color back in my skin which I have not had in five years. only issue now is waking up in the middle of the night having to pee and feeling completely awake and wired. im sure this is from sprycel

I really advised anyone switching from gleevec to sprycel to stop all meds for a week and then make the switch.

of course if your health permits you.

thanks again to all for the helpful feedback. you all made it easier for me to make the switch.

Happy Holidays

[GerryL]

Good to know you're doing well. Looks like Sprycel might be the drug for you 

[mmdojr]

looks like it gerry. thanks