13 replies to this topic

[JLS]

After being on gleevec for a year and a half and dealing with constant nausea and extreme fatigue I asked my doctor if this is just what I should plan and expect for the rest of my life?  He told me No, you can switch to one of the other medicines. I was afraid i would just be exchanging gleevec side effects with sprycel side effects. I waited a few more months to decide. When my 10 year old had a melt down one day and said "mom, why do you have to be so sick all the time?" I decided to try it!  I began sprycel two nights ago. I slept fairly well but my head was spinning a bit and some stomach pain. In the morning I had a terrible headach and the  fatigue was overwhelming, I slept for most the day!  I Woke up today still with the headache, bit actually feeling a bit better. Which is encouraging!  I hope I have made the right decision, and am so excited that we now have other options with our treatment!  I will up date again in a week or so!

[hannibellemo]

Congratulations! I hope that Sprycel brings you the quality of life you want and deserve.

Pat

[jrsboo]

Good Luck!!  While Sprycel may not be side effect free, I have been on it for 5 months and it is livable..........

Caroline

[jwbwater]

Glad to hear your side effects are getting better.  I've been taking Sprycel for just over a week.  No real side effects so far, I don't count dehydration since G and T did that too.  I just keep three large glasses of water on my bed side table and drink every time I wake up.

[Marnie]

Hi, JLS. . .

I was on Gleevec for about a year and a half before switching to Sprycel.  I hadn't realized how lousy I had been feeling while on G.  I pretty much just didn't give in to it and got on with life.  I've been on Sprycel for a month now, and so far, I'm pretty much impressed, although I don't have PCR results yet.  I had a low grade headache for the first week, but that has gone away (I started at half dose and I think that made a positive difference).  I didn't have GI issues for the first 2 weeks, but they seem to be starting up, though not nearly to the extent of Gleevec.  I have noticed some wierd side effects with my period, but I'll wait for awhile before passing judgement on whether it's Sprycel-related or age-related.   I wish you all the best and hope that you notice a difference in how you feel on Sprycel like I did.  I also hope that we both see great results in our blood work.

Best of luck,

Marnie

[JLS]

It has now almost been a week.

Just thought I would update on how I have been feeling on the sprycel! For the most part-Horrible!

I hate to say that as I really had high hopes. However I am not giving up.

I have had the headache non-stop since starting the medication. It is excruciating!

Then about the third day I started with terrible bone and muscle pain. I can't sleep because of it. When I get up I feel like I have

been run over by a truck. Doing things through out the day is almost impossible.

I called the doctor to ask about it, he of course told me to continue taking tylenol and Ibuprofen, which neither has made much of a dent in the pain.

Then he said, if you don't get over it soon, we can try switching you again to Tasagna.

Ok, the last thing I want to do is switch again!

I'm hoping to have some relief in a few days! Does that seem possible?

Thanks so much for your comments and help!

[janekaye]

I do think you'll see an improvement soon.  I switched to Sprycel more than a year ago after about 8 miserable months on Gleevec.  The first 5-6 days were DREADFUL on Sprycel - I barely got off the couch.  And then after about a week, everything started to improve and I've been very happy with Sprycel ever since (not that it's without its own side effects, but I think they're very manageable for the most part).

I hope your experience is the same - don't give up yet, but just give it a little more time for your body to adjust to the new drug.

Wishing you the best.

-janekaye

[jrsboo]

Dear JLS,

Tell your doc that the tylenol isn't working.   I have prescriptions for morphine and dilaudid to take for the pain.  I have found that the pain cycles in about 4 day jags but about a month apart, and the pain is lessened each time.  But I am super sensitive to drugs, and can't take most pain medication, that is why they gave me the big guns.  You have to be your own best advocate and let them know that their pain medication regiment is not working for you.

I did find that liquigel aleve worked the best of the over the counter mediations, but they don't want you to take aleve while on TKI's I think.  It is a balancing act between the pain and what the pain medication is doing to you.............

Caroline

[DIona]

HI JSL,

I just found this site!
I was on Tasigna since being diagnosed in August 2010. The headaches and fatigue caused a switch to Sprycel just last Friday (March 11). So far, still have the headaches and have slurred speech sometimes. Or, I'm just so tired it seems that way.

Finding it impossible to work or get much done.

I'm going to bed very early, but can still hardly get up in the morning.

Hoping for an ease in side effects.

All of the comments here have been very helpful and make me feel like I'm not so alone out here. XXOO to you all.

-Debra

[CraigW]

Woah, back the truck up.

What dose of Sprycel are you on?

How well did Gleevec control your CML?

If you are at the maximum dose and it is too much for you it will cause lots of side-effects.

I'm on 50mg, PCRU and have zero side-effects. I was PCRU on 300mg of Gleevec, so it seems I metabolize the TKIs real good.

Tasgnia is much like Gleevec, more powerful and difficult to comply with dosing requirements. Because you have to take it twice a day exactly 12 hours apart, and two hours after a meal.

If your PCR numbers are good on Sprycel, try dropping the dose, with doctor's consent. Some people have maintained a CCR on as little as 20mg.

TKIs are a treatment not a cure, you need to be able to gain and keep a solid CCR while being able to live a normal life.

[JLS]

Well it has now been three weeks. I am finally feeling better then when first starting. Headache is much better; it does come and go but nothing like that first couple of weeks.

Bone and muscle pain not as bad, but I do still have it in the mornings and after I rest. Resting is still a daily need. I sleep an hour or so every day, fatigue is still a big part of life.

I figured this would be the case but I'm still hopeful for improvement in the months to come.

New side effects that have come with the switch are canker soars and a cold soar, which is not something I am prone to. It is listed as a side effect.

I have also had a slight rash on my face but my family just tells me it looks like I have a tan.

Two things have improved, no more nausea! This is such a great feeling! The other is no more swollen eye's. I have battled with that with gleevec. It was all the time, not only did I feel terrible I looked it too.

Looking better may seem superficial but it does make a difference as we try and live a normal life while taking these drugs.

I have seen the doctor for blood draws and EKG every week. Every thing looks good! My levels have dropped a little low but now starting to level out, which is normal.

I am happy with the switch so far and hope for continued good health and good blood results on this new medication.

[DIona]

HI JLS,

Glad to hear your side effects are lessening. It's encouraging for everyone to hear good news like that.

I see a lot of people who have gone from Gleevec to Sprycel and am wondering if anyone has tried tasigna at all.

I've tried all three, and for me, Tasigna seems to be the best.

-Debra

[JLS]

I thought a quick up date would be helpful for those who are looking at switching.

After almost 2 month's on Sprycel I feel great! I really can tell a difference. The fatigue is almost non existent! I have more energy. I don't have to nap anymore.

I wake up not feeling sick! Wow! With gleevec I can honestly say I woke up everyday feeling sick.

I have no more nausea!

Despite the month of adjusting to the medication with extreme fatigue, body aches, and horrific head ache. I will say it was totally worth it!

I do need to report a couple of new side effects. I have had several eye infections, one that was so bad that I had to go on

an antibiotic as it had gone into my sinus's. I did find it listed as a side effect somewhere on line.

Also I have had a weird rash, bumps on my head, face, and neck. These come and go. I do believe that this related to the medication.

I just recently had to have a biopsy on an age spot that suddenly turned into a strange mole. I don't know if that is related but it seems

like it could be because it came on right about the same time as the switch.

Other then that I really do feel like this was a good change for me. I feel so much more hope for the future with this medication.

Good Luck to those who might see this as an option for their treatment!

Jen

[CallMeLucky]

Thanks for the update, very interesting about the fatigue.  Please update from time to time, I am interested to see if that continues (I really hope it does:) )