Comment from: Joan 75 or over Female 10 years or more Patient Published: April 21

I have been on Gleevec Since Jan. 2009 for GIST. I was first diagnosed in 2003 and had stomach surgery. Five years later second surgery when cancer spread to my liver. Several months later I was put on Gleevec 400 mg daily. First shock was the cost. $69,000 and 10 years later I am cancer free. Doctor won't use word "remission". I am grateful to be well. However the side effects are devastating: six years ago I had several iron infusions and since then have monthly B12 shots, am closely monitored for anemia. I have constant extreme fatigue, shortness of breath, fast heartbeat, weight gain and my biggest complaint, severe muscle pain and weakness. I walk with a cane or walker some of the time, cannot walk any distances, have to sit often, have to rest between chores, must sit while doing some of them (cooking for example). I am unable to work full time. If I have a day of excessive activity, I need next day to rest and recuperate. I remain in care of doctors as they agree my complaints are side effects of this drug. I am now on 200 mg daily of the generic. No change in any of the side effects. Drug still expensive. Yes, it saved my life. I know that. My quality of life is dramatically changed from the medication and I all always resent that.

Related Reading: gleevec | cancer | liver

Comment from: Gleevec 55-64 Female 5 to less than 10 years Patient Published: January 29

Mt side effects from Gleevec are Joint pain and severe leg cramps and anxiety

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Comment from: Mike 65-74 Female 1 to 6 months Patient Published: February 27

after 16 months on Sprycel, I experienced both pleural and heart effusion so was shifted to Gleevec. 6 weeks in, rash, stained teeth and dry eye with chronic conjunctivitis.Too soon to evaluate effectiveness, about a month away from first BAL with new drug. More later

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Comment from: wHairhouse 45-54 Female 1 to less than 2 years Patient Published: October 19

Three years almost to the day since I was initially diagnosed. Dx'd in Accelerated Phase at 18% blasts (almost Blast Crisis), and my spleen was severely swollen. This is my third type of TKI inhibitor because I just can't seem to tolerate them, although I did get about a 5 month stretch of remission at one point from the second one I was on. When I came out of remission it hit me hard though. Within a matter of 4 months I went from 5% blasts to 42%. My side elects are: mouth sores, nose bleeds, uncontrolled abdominal pain in left upper quadrant under ribs, extreme bone and joint pain, extreme fatigue but also extreme insomnia,dehydration, loss of appetite, weight loss, extreme night sweats (sometimes I have to change in the night and lay a towel down where I'm laying in bed), shivering, cold/clammy, ptechai blood spots/rash, severe unexplained bruising (I can wake up and find a softball size bruise on my leg just from sleeping alone), occasional gastrointestinal bleeding, constipation, diarrhea, and brain fog (I live 6 blocks from the grocery and have forgotten half way there where I'm going only to break down crying and call my husband to help me). I'm not a candidate for a marrow transplant, so even continuing on the medication my survival prognosis in blast crisis is one year or less. If I stop taking the meds it will progress faster, but I won't have all these side effects. If I keep taking them, it will help me squeeze out every last day possible, my quality of life from side effects will be crap. I'm stuck and have no idea what I should do.

Related Reading: fatigue | insomnia | dehydration

Comment from: LWT 65-74 Female 10 years or more Patient Published: August 24

Had 7 lb tumor removed in 2003. Didn't start gleevic a year later after metastasized to liver. Started on 400 mg and shrunk tumors. Tumors have come back 3 times but doctor increased dosage t0 800 mg. Now back on 400 mg. I will be taking rest of my life. The drug does cause hemorrhaging in my eyes. I thank God everyday for this drug. Just wish it wasn't so darn expensive.

Related Reading: liver

Comment from: Jeanine 45-54 Female 1 to 6 months Patient Published: May 14

I'm fairly new to Gleevec...taking 400mg a day for a 9.5cm GIST tumor that was removed entirely from my jejunum (small intestines). Taking Gleevec (Imatinib) to prevent recurrence. The side effects I am having most are occasional nausea, extreme fatigue (i am always tired from morning to night), blurry vision, muscle/joint aches

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Comment from: 65-74 Male 2 to less than 5 years Patient Published: March 20

Some early cycle gastro discomfort. Generally effective and over time, my body adjusted to the medicine.

Comment from: 45-54 Female 2 to less than 5 years Patient Published: December 17

4 years on Gleevec. had a 15 cm GIST removed, the drug stopped the growth and killed 50% of the cancer cells. Now 3 1/2 years cancer free. Side effects are manageable, mainly abdominal bloating.

Related Reading: gleevec | cancer

Comment from: Tex 65-74 Male 1 to less than 2 years Patient Published: August 22

I have had few side effects with this medication and CML has been in clinical remission since being on Gleevec for six months. I have now been on it for 18 months. After 6 months on the medicine my cardiologist noted reduction of heart function or ejection fraction from 55% prior to Gleevec to 45%. After 6 more months of treatment, heart function declined further to 40%. My oncologist was considering changing medication when I opted to seek another opinion at M. D. Anderson. Fortunately, I was referred to a cardiologist there who monitored CML patients when Gleevec was being evaluated back in 2000. He had observed similar heart function problems to mine in patients who had had bypass surgery or stints (I had bypass in 2009). They found that a common beta-blocker blood pressure medicine restored heart funtion to normal within a few weeks. He prescribed Coreg for me and my heart function returned to normal in only one week. I am able to continue by treatment with Gleevec, I just have to add Coreg to my list of medications.

Related Reading: gleevec | treatment | coreg

Comment from: grannyvibbert 65-74 Female 5 to less than 10 years Patient Published: March 19

I have taken gleevec for 6 years but this year I'm dealing with blurred vision ,bacterial pneumonia and blood clots in my lungs .just praying this goes away.

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Comment from: Gleevec veteran 55-64 Male 5 to less than 10 years Patient Published: January 07

I have been on 400mg daily of Gleevec for 8 years following surgery to remove a GIST. My overall experience has been excellent. Clean scans for 8 years. Only apparent side effects have been persistent and painful muscle cramps in hands, arms, legs and feet. 16 oz of tonic water with quinine daily has reduced the cramping significantly. Has anyone experienced hair loss with long term use of Gleevec or hemorrhaging of the small blood vessels in the whites of the eye? I'm experiencing both but don't know if they are due to the Gleevec.

Related Reading: gleevec | muscle cramps | hair loss

Comment from: Muffin 35-44 Female 2 to less than 5 years Patient Published: November 26

I was diagnosed in 2009 with a GIST of the duodenum that had spread to my liver, lung, kidney, pancreas, small intestines. I had a modified whipple procedure and started Gleevec. I lost 60lbs and was sick all day every day for about the first two years. Now, four years out, my nausea is controlled by phenegren for the most part. I still have bad days, but feel much better. I have been told I will have to take Gleevec for the rest of my life. But so far, so good. Grateful to God.

Related Reading: liver | kidney | gleevec

Comment from: from 65-74 Male 2 to less than 5 years Patient Published: October 03

from a100% positive test for cml to a99.9% neg. test in30 months. 400mg daily side effects are severe shotness of breath & swelling & pain in lower legs &ankles.

Comment from: Garry 65-74 Male 10 years or more Patient Published: July 14

I have taken Gleevec since March 2003. I went into remission early on, and am overall pleased with results. If no insurance, med would be $9100.00 per from PSI with co-pays. Side effects are bothersome, like diarehha, nausea, fatigue, but at 69 I am grateful for life and the Gleevec. Bone pain, leg cramps, feet cramps and Drs. don't ever seem to address these side effects or recommend anything to help them. Overall very pleased with blood results on Gleevec.

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Comment from: Donald 75 or over Male 6 months to less than 1 year Patient Published: May 09

I have side effects of Gleevec that are not comfortable but the drug is apparently doing what was expected.

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Comment from: ivette 45-54 Female 1 to 6 months Patient Published: May 07

I have an Epson 9 mutation, so I intake 800mg per day. side effects are notably strong, that is edema, anemia but...are there ways to reduce these side effects?

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Comment from: ew 65-74 Male 2 to less than 5 years Patient Published: February 01

Diagnosed in Dec 2009. Chemotherapy, six treatments and stopped for risk concerns. On Gleevec for 30 months and in partial remission. Cancer % of blood very low on BCR ABL testing. Gleevec keeping me alive and for 70 still able to do many limited physical things. Unfortunately I am tired, have bone pain and muscle cramps on a daily basis. The diarrhea, eye and leg edema has subsided over time. I am hopeful the same will happen to other side effects. I am grateful to be here and to be enjoying my family. It is a difficult existence when compared to how life was before the leukemia and their support is what keeps me going. I encourage those with similar physical side effects to share the info with their family physician as they are able to prescibe helpful medications to deal with these problems. I take Zofran to help with stomach problems, flexeril for muscle cramping and immodium for the diarrhea. Advil helps with bone and joint pain. There are several new medications similar to Gleevec on the market. If your side effects are too severe maybe you should try one of those. Talk to your oncologist. As a final note. Without Gleeveec to fight the leukemia I would not be here to write this comment. That in itself says a lot about use of the medicine.

Related Reading: gleevec | cancer | muscle cramps

Comment from: 45-54 Male 2 to less than 5 years Patient Published: October 23

rash early on, subsided at about 2 months. runny stool. anemia early on. increased greens intake helps.

Comment from: Fritz 65-74 Female 2 to less than 5 years Patient Published: October 08

Diagnosed age 66. Am now 69, in full remission. Usually tired, and nauseated after dosage if I don't eat first. Sure am glad I have job and medical insurance, considering the price of Gleevec. Patent ends in 2015 I think. Maybe I can retire then! Good luck to all!

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Medical Editor: John P. Cunha, DO, FACOEP

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