17 replies to this topic

[dlb65]

After 2 1/2 years on Tasigna and reaching MMR at 18 months, I will be switching to Gleevec. Have the usual Tasigna SE's, Fatigue, Quesy and Headaches, but have been developing metabolic changes consistent with occlusive arterial events that have been associated with Tasigna, thus the change. Been advised to stop Tasigna for 5 days before starting Gleevec 400mg and to do it over a weekend before returning to work. Would like some advice from the Pros out there on when to take it? what foods to take it with? and what to expect.

Thanks!!

[rcase13]

I think I will be doing the same if I can reach PCRU. How were the events noticed? Did you have symptoms or did a test reveal it? If so which test? I have had regular electro cardiograms and echos performed. So far all seems to be fine. Is there another test I should have?

[kat73]

Take Gleevec with plenty of food.  And I mean, not just a cracker or a banana.  I mean, say, a breakfast of oatmeal or eggs and bacon, or a lunch of a salad and soup or a sandwich and a dinner with a brown thing, a white thing, and a green thing.  If you try it with nothing or a measly cracker YOU WILL BE SORRY.  Even so, expect to have random attacks of nausea anyway.  I used to talk myself down from throwing up by repeating the mantra, "it's $100, it's $100, don't lose it!"  'Course now I'd have to say, "it's $300, it's $300 . . . "

[Buzzm1]

dlb65, what works best for me, after having suffered through stomach problems (had to take a med break) and nausea, was, I began taking Gleevec 400mg one hour after my heaviest meal of the day, that being dinner in my case; it worked for me.  Fatigue is another matter altogether; still hopeful.

 

TKI's affect each of us differently ... try to be optimistic ... and when that fails. join the GC&W club.

 

Good Luck,

Buzz

[Buzzm1]

SNIP

'Course now I'd have to say, "it's $300, it's $300 . . . "

Make that over $360; it's over $360

[dlb65]

rcase:

How were the events noticed? Did you have symptoms or did a test reveal it? If so which test?

 

I developed elevated cholesterol, triglycerides, glucose and increased blood pressure. With the new evidence of developing occlusive arterial events that have been associated with Tasigna, it was suggested that I switch. I am very concerned about nausea and fatigue, but it seams to effect everyone differently, so I am going to give it a try. Sounds like after a massive meal is the way to go.

[Gail's]

Nausea is real side effect from gleevec. Food and a glass of water, and splitting the dose half in the morning and half in the pm was the biggest help. Diarrhea pretty bad. Imodium works for me plus adding fiber to the diet. I think all TKIs have fatigue effects. I sleep more and nap but don't quit moving. It gets better.

[Marnie]

I would recommend taking Gleevec with dinner, simply because then you can deal with more of the side effects at home rather than at work.

 

Biggest piece of advice. . .don't get too far from a bathroom.  Gleevec is notorious for GI issues.

 

I also had pretty bad cramps in my hands and feet while on Gleevec.  Tonic water is supposed to help with that.  A gin and tonic at bedtime is one solution.

[PhilB]

I believe they have yet to discover anything that isn't a potential Gleevec side effect so there's no way to predict which one's you'll get, but most of us find them bearable and most seem to get better over time.  The GI ones are definitely the most common and the impact for many of us is a bit like swallowing a depth charge.  I won't go into too much detail, suffice it to say that when you clean the toilet don't forget the underside of the seat.

[Melanie]

PhilB,
Ha, ha! Thanks for making me laugh as I read your post right before I started cleaning the bathroom and those toilets! I'm sure I'll be grinning all the way through that nasty process!

[dlb65]

GC&W club??

[Judithb]

This post is so timely for me.  Can I ask please, the following:  I have been on Tasigna for 4 weeks and medically it has been very effective, BUT I have a side effect that is driving me crazy--I call it hair on fire and it feels like a colony of fire ants has made a nest in my head.  My onco is very attentive and is giving me steroids, histamines, and gabopentin to try to help, but today at Johns Hopkins, the head of hematology (where I went for a second opinion) asked me:  why are you taking four different medicines to counter the side effects when you could switch to another TKI.  He recommended Gleevec, but based on your responses I don't know.

 

Any one have an experience similar and have any comments or advice for me.

 

Tks so much.

[dlb65]

Fairly common side effect with Tasigna. I have found Steroids and antihistamines to be mildly helpful. Tried cutting hair, new shampoo, etc. Tar shampoo seems to help, but what works the best is time. It magically disappears for some unknown reason for weeks at a time then-Boom it returns. Over time though it gets less & less but just when you think its gone-it will come back for a day or two.

[OhNanna]

I'll agree with the others, definitely eat a good meal BEFORE taking Gleevec. I also found after lunch or dinner to be best. I still have the typical GI issues, but much less. It also helped me, when I was struggling with it, that others shared that most of the side effects decreased by about 6 months. Thankfully, within about 4 months I was feeling significantly better and the effects are manageable.

[Judithb]

Tks for the advice.  I appreciate hearing other's experiences.

[flyingpup]

I've been on Gleevec since December 2006.  Through Trial and Error I have found the following very helpful in keeping the SE manageable.

 

NEVER be hungry when you take it.  If you are very hungry eat small snack/meal before your main meal - so I found this left out breakfast.  MAKE SURE CARBS AND NON-SPICY PROTEIN is in the meal that you take Gleevec.  MAKE SURE YOU DRINK ENOUGH WATER - I need at least 4 to 5 20-oz glasses (I noticed my cramps decrease when I'm very hydrated).  LIMIT PHYSICAL ACTIVITY RIGHT AFTER TAKING PILL - anything that causes the pill to digest faster tends to exaggerate the SE for me - which leads me to - NO SWEET DESSERTS FOR 2 HOURS AFTER TAKING GLEEVEC - I can have dessert before my meal (if meal has lots of protein and carbs) or 2 hours after, but not before that. WATCH YOUR SODIUM INTACT - I retain less fluid if I watch my sodium intake.

 

This isn't 100% guaranteed, so if do feel queasy - SALTINE CRACKERS AND GINGER ALE (preferable with real ginger).  In the beginning I was eating SWEETZELS GINGER SNAPS, if the pill made me queasy, and they helped a lot, only needed a couple.   

 

For Fatigue - It's there.  I have noticed a slight improvement in the last couple of months - things that I have changed:   REDUCED STRESS, REDUCED CAFFEINE (so I can listen to how tired my body really is, and avoid getting too overtired - takes too long to recover), SWITCHED TO DINNER TIME TO TAKE THE GLEEVEC - (I was taking it at lunch, since that is my preferred large meal, but was tired every afternoon. ) EXERCISE - I've tried various things over the years, but back in March I started going to the gym with my husband and girlfriend 3 days a week.  At first I just had to be there for an hour doing whatever I could for as long as I could (even if it was just walking slowly around the gym, or taking a long break after just doing one exercise, it was more than I was doing at home).  It took over 6 months before I could really feel like things were showing any signs of improvement (have trouble moving for an hour, some days it's half and hour and I'm done - but I'm moving).  I had tried exercising with a specific goal in mind and it just made me more tired.  My goal this time was strictly to improve my stamina, I wasn't trying to walk a certain distance, I just didn't want to be as tired.doing day to day things  

 

Oh and MENTALLY  - some days are foggier than others, ESPECIALLY when I'm tired.  I've found mentally stimulating games have helped my concentration (Lumosity's free games daily, etc).

 

Sorry for the length, and hope that some/all of these things help.  I just tried to tackle each side effect as they appeared and find a way to make the best of them.  I've been lucky and right now it's pretty much working for me, and hope you find a similar balance. .  

[AllTheseYears]

clb65 (and others):  I took Gleevec for 13 1/2 years.  Nothing else was available when I was diagnosed. Undetectable for most of that time. Gleevec worked. However, I have experienced ALL of the side effects described here.  I can say for sure that over-work  and stress exacerbated every nasty side effect. Even social events took a great toll. I learned to rest when needed and to say "no" to many things.

 

Now I'm in TKI cessation, since September.  Interesting enough, not taking Gleevec has nasty side effects, too.  Still, I'm alive and getting the most I can out of life. What else can we do when we get a lousy CML diagnosis?  - B.J. 

[dlb65]

Thanks for all the useful posts & suggestions. Will go off Tasigna for a week and give it a try. Hard to get accustomed to EATING before taking meds. With Tasigna it was just the opposite. AllTheseYears comment of over work and learning to say no has been the hardest for me, yet it seems to be a necessity with all the TKI's.
Many thanks!