58 replies to this topic

[CraigW]

What worked for me while I was on Gleevec:

Yogurt Smoothies. One to two a day kept the D away.

Sprycel "cured" me of the D.

[sferrazza]

OMG

I just found this sight too.  Are you inside my body because thats exactly how I felt on Gleevec.  I was just put on Tasigna, 3 weeks now and side effects suck.  Severe headaches, and itching like crazy. 

[Shalom]

I never had the Sharts before now I have been almos a week suffering the sharts lol, thats sucks I don't know what it changes, also I was running 1 mile everyday and sometimes only walking and I used to have energy and now I have been for one week with no energy and everytime I go upstairs my heart goes fast than before what can be happend now is 7 montths with Gleevec already. Another think I got a racing heart last Tuesday for about 15 minutes and went to emergency they did a bunch of test and everything was OK. Now I am only waiting for the aftershock like in a earthquake all scare thinking that is going to happend again. I don't know what happen. Trey if you have something for this please give me some advice.

[Trey]

Fatigue is one of the most common complaints about TKI drugs.  An occasional racing heart does not mean you have a serious problem.  But tell your Onc next visit about all your side effects so they can be monitored.

[Shalom]

Thanks Trey for the fast responce I really appreciate all you do for us here in the forum.

[Skittles]

Trey, you are so helpful and sometimes your input is really hilarious (though true) so I join in on thanking you once again.  It's true about fruits...a grape-escape is no fun at all!!!  Tucks, now that's a new one!  See we learn something new here everyday..ha!  Skittles

[momruns]

Hey,

I do not get a racing heart my issue is any valsalva maneuver (bending over while sitting, going to the BR, any straining even slight) causes my heart beat to be extremely loud in my ears.  Two weeks ago I bent over to pick up something on the BR floor while sitting on the john and I got up and I had a hemorrage in my right eye.  Now I am on BP meds since I got hypertension from the G but it has been stable.  I was off the G for one week and restarted at 300 and for 2-3 weeks good but not I am beginning to hear the heartbeat again.  I see the Onc on the 29th so we will be reviewing this with him again.  Being a nurse is somethimes worse because I think the worst sometimes, like if I bleed into my eye what about my brain......  It would be nice to shut off our thinking process or maybe redirect it when it goes astray.

Loreta

[Shalom]

For me is getting very difficult right now after 2 times of racing heart is like a hearquake for me I am just waiting for the aftershock all day long, my mind is always thinking in my heart or any different reaccion of my body, this is really killing me, but I have only 7 months and I can't quit I know that at the beginning this wasn't going to be easy, so now I have to hang in here with all this new feelings. My racing heart really scare me and I am very worried right now, in the hospital a cardiology perform several test like EKG, ECHO, Stress test and some blood tests that shows enzimes I think is the LDH test. Anyway the doctor told me go home your heart is in perfect conditions. Now one more time and same thing at the hospital, this time they said that is anxiety, what I don't believed but what can I say.

What I feel is  a weird feeling that something comes from my stomach to my throat and thats when my heart start racing, another thing that I notice is that when I burp my left ear vibrates, also I burp a lot all day.

Thank you people for share

[Augustfirst2010]

Hi guys...haven't been around for a while...been working on things.

Are you all still talking about the side effects of Gleevec, or are you talking about the side effects of Sprycel now?

[samycat24]

I'm only on my second month of taking the Gleevec but I'm with you in the pursuit of answers in the "sode effects" arena. It seems no matter what I eat, when I eat it, or drink it, I can't. I get the debilitating pain in my abdomen, the fatigue in my legs, and the  big D and I don't mean dallas! I'm trying to use some of the suggestions I've seen on here and try different ideas at home and see how it goes at home with these "alternate' ideas! Let's see how this goes! usually if I'm out running errands I've learned to not really eat nor drink anything unless there is going to be a bathroom nearby! I'm only 34 so depends are not in any nearby future as long as I can help it! But I do listen to any and all suggestions.. I hope everything works out for everytone and thanks Trey for putting everythign into..Leyhmans terms! Awesome! 5 more weeks for me til I get my 1st complete molecular workup since I was originally worked up so crossing fingers but 2 weeks ago WBC was within normal range so there's a glimmer of hope.......Spirits up and move forward! : )

[momruns]

I tryed probiotics for the D and it cut it way down.  If you drink Pepsi or Coke this knocks off the bacteria in your stomach and gut that we need and probiotics replace them.  The doctors at work suggested it and it has helped.  Ask your ONC before taking any suggestions from anyone, even one as simple as this one.  Each person has different added issues and some supplements aren't for everyone.  I am looking for a remedy for fatigue and I know working all the hours I do on my feet is not the answer but scrubbing in the operating room is not the perfect position to be in.

Loreta

[LoriM58]

If I make a fruit smoothie with probiotic/prebiotic yogurt and some flax seed in it, I dont have the stomach issues.   But also battle the fatigue big time.  

Lori

[valmaria]

Hi everyone,  I am new here as well (diagnosed Feb 11,2011 ).  Just reading these posts have been most helpful.....I am having a horrible time with Gleevec. Also tried Sprycel and Tasigna, they were worse than gleevec.  Between the "sharts" constantly, the nausea, the bone pain, the hair loss, my hair has gotten so thin, I had to cut it short to compensate, oh yea and the obnoxious weight gain and the fatique...I am about to lose it.  I have two questions....No one has mentioned a translplant, I would gladly undergo that temporary hell, than live like this the rest of my life, ughhh if it is an option .  I am also having a problem remembering to take the darn pill...I take it (when  I remember) with breakfast. How does everyone deal with this? Any input would be most appreciated!

Val

[GerryL]

Hi Val,

Can I suggest some things to try to help with the side effects

Probiotics for the sharts

Calcium, Magnesium and vitamin D supplement might help with the joint pain

I have ginger beer cordial when I take my Gleevec, but you can also talk to your GP or specialist about an anti nausea tablet - which I do take occasionally

Check if your weight gain isn't due to fluid retention - you'll need to talk to your doc if it is and they should give you a script for fluid tablets.

Exercise can actually help with the fatigue - though if you've got joint pain, that could make it difficult.

Get yourself one of those weekly tablets items, that way you can at least check through the day to make sure you've remembered to take your Gleevec.

As for transplant, I think most of us think of it as a last option.

Hopefully things improve for you and you can get some of your life back.

[Susan61]

Hi Val:  Don't refer to a transplant as a temporary Hell.  You want to avoid a transplant as much as possible.  You could just be someone that needs time to adjust to side effects.  In most cases they get better as the years go by.  I said years, and not weeks or months.  I do not deny that after 11 years of Gleevec that I still suffer with different things.

I just look at the alternative.  If the Gleevec is working for you then try not to think about BMT.  Where are you at this point?  You said you were on Tasigna and Sprycel.  How long are you on the Gleevec?

     I have never had a problem as to when to take it.  I have always taken it along with my other medications with a decent breakfast to avoid nausea.  When I first started, I would grab a light breakfast like a piece of toast with Coffee, and I would get the Nausea.  You have to find whats right for you as far as how much food you need to absorb your medication.

    I should have welcomed you to the group first, before I started rambling on here.  I hope you join in with us, and share your experiences.  What we go through always helps somebody else.  Don't ever think your the only one who feels all these crazy symptoms.  There is always somebody to talk to on here, and you will get quick answers too.

We have a great bunch of people who always want to help.  So Welcome to our club nobody wants to join!!

I am always available for a personal message also.

Susan

[Happycat]

Val,

Can't help you much on the GI effects, as I don't get a lot of those.  (Believe it or not, but I still need to take sennokot and colace, I get constipated from Gleevec.).

I do however get the burning sometimes, mainly from a lovely hemorrhoid I got as a birthday present from my eldest (her birthday, giving birth to her, that is).  I find a good soak Ina site bath, for as little as 10 min a day can really help.  Also, I have my butt pillow (aka hemorrhoid cushion) which I use as needed.   And yes, I drag it to work with me if I am really suffering.

To help remember take my pill, I set an alarm on my phone, so it goes off at 7:15 pm everyday, as a reminder.  This works really well for me  the only time i have a problem with it is when we are out somewhere loud and i cant hear it. 

I also have set my kids as my reminders.  It's great, but I do wish they'd remind me before I sit down to eat my food.  I said that last week when my dd Emily told me to take my pill, and that little sweetheart not only reminded me for the rest of the week, but she even brought my pill bottle over to me.  What a sweet pea! 

Traci

[valmaria]

Hi Tracy,

Awww how sweet. My kids aren't at home anymore, but, I will admit..My son does call and ask..."Mom, did you take your pill this morning."  Bless his heart!  You are truly blessed not to have to deal with the majority of these side effects. If I had an enemy, I would not wish this on him or her.   I told my husband the other day.....Remember when my Onc said "Your quality of life will pretty much be the same.".....Boy do I have a bone to pick with him.  Nothing has been the same since I was diagnosed. I pray to God that this isn't going to last forever.  Like someone on here said...you feel like only a shadow of yourself.

Val