It saved my life, the sad part is how many people die because they have no insurance and can’t afford it being over $300 dollars a pill which is insane because the same Exact medicine Imatinib Mesylate Tablet 400mg is $1.50 a pill for pets ..
I have been taking imatinab (gleevex) since July 2019 when I was diagnosed with GiST. I had an 8lb tumor removed during surgery in August 2019 and have continued taking gleevex 400 mg since. I feel very fortunate that I’ve had very mild side effects which I have easily been able to tolerate. On my last visit to the oncologist I was told I could stop using the medication and then follow up with CT’s every three months, or continue on the medication and move to once a year CT’s. I opted for continuing and moving to once a year testing since my side effects were very mild. IMPORTANT: When I first started taking gleevex my co-pay was $150 a month with my insurance. Through research I have since found an online pharmacy costplusdrugs.com at which I am able to get a THREE MONTH supply of gleevex (generic) for less than the price of my previous monthly co-pay, without using my insurance. It’s worth checking into.
I was diagnosed in 2016 and had a WebDAV of 111,000. Within a few months my count was lowered to normal and I was able to handle the side effects. In 2020 I started to slow down considerably, being exhausted all the time. I fluctuate in and out of remission and have tried several dosages but for the most part remain at 1% or lower. The side effects however have gotten worse, left calf cramps painfully all hours of the day, hands and wrists hurt badly, bones and joints ache. The worst things is the exhaustion. I used to work a 60-hour week in a fast paced high pressure job, but in the last 2 years I can barely get myself to shower, let alone leave the house for any reason. I am tired. Tired all the time.
Gleevec is working well for my CML but the side effects are debilitating. I have severe fatigue, muscle and bone pain, trouble sleeping, extremely tired after doing small tasks, brain fog, confusion, feeling very weak, trouble thinking. I’m all by myself and life is pretty hard. I wake up not knowing how I’m going to be feeling but I know it will be another tough day. I wish everyone taking this drug the best of luck and God bless.
Had a whipple procedure in 2013, no medication until 2020 when we found a large tumor taking most of my liver. Started taking Gleevec, which worked very soon, by reducing the bulging tumor, but I have been told that I will need to take it for the rest of my life.
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.
Mt side effects from Gleevec are Joint pain and severe leg cramps and anxiety
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
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.
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.
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
Some early cycle gastro discomfort. Generally effective and over time, my body adjusted to the medicine.
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.
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.
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.
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.
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.
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.
Been on Gleevec (400mg oral, at night) for 16 years. I get most of the 'severe' side effects (severe heart issues, EF from 64 to 44 but Coreg did help, now at 58 but had to have the atrial valve replaced and had rhythmic tachycardia so an ablation as well; aches, pains, discomfort are severe (do use small opioids at worst); gonadal suppression, free T was almost 0, now on TRT, amazing help; had 'sausage toes', thickening and one toe growing sideways; not much rash but a bit of skin issues; the later TKIs are all more 'cardio toxic' and also can have marked pulmonary side effects (my onc told me one seems to 'cause death'... wonderful) so I am staying on Gleevec.