Generic Name: Gleevec (imatinib)
For Chronic Myelogenous Leukemia "I have been on Gleevec since 2/2006. My white blood cell count went from 350,000 to 75,000 in less than three months. I went into full molecular remission by 2/2007. I have the BCR-ABL blood test every 6 months and there is no more Philadelphia Chromosome present. I still can get nauseated and occasionally vomit if I do not take my Reglan correctly or take Zofran with it, but that's a minor annoyance since this medicine saved my life. I would have only had a 40% chance of survival if I had a bone marrow transplant. Gleevec has given me a 95% chance of survival, and I'm almost at the 10-year milestone on the medication."
For Gastrointestinal Stromal Tumor "After having surgery to remove my gastrointestinal stromal tumor one year ago, and having a CT scan every 3 months, I am NED (no evidence of disease), due to taking Gleevec. I only have one noticeable side effect, occasional nausea."
For Chronic Myelogenous Leukemia "I've been on Gleevec since Aug. 24, 2001, for Chronic Myelogenous Leukemia. I've had no side effects with it. The only side effect I had is when the doctor had me on both Gleevec and interferon, it caused my heart function to drop. They took me off the interferon, and heart function was normal. Been in remission for 11 years."
For Gastrointestinal Stromal Tumor "I am taking Gleevec after surgery to remove a 15 cm tumor. It has been 7 months, and I am tumor-free. The main side effects of taking Gleevec have been abdominal bloating with pain, at times severe. I am able to handle the side effects for the most part, but when it becomes too much, I just reduce my dose for a few days until I feel better, normally for two days a week. I was on Gleevec for 5 months prior to surgery. It didn't reduce the tumor, but it stopped its growth and reduced the density considerably."
For Chronic Myelogenous Leukemia "I was in one of the first studies on Gleevec (STI571). I started on Feb. 5th, 2000. It has been a lifesaver. Some side effects, but it's better than being dead. The cost is high, but it is what it is to stay alive. Was in remission less than 6 months, I have been on 300 mg all these years."
For Chronic Myelogenous Leukemia "I am so thankful for Gleevec! I did have some side effects, but prior to Gleevec, taking interferon and hydroxyurea led to much more severe side effects. I had aching limbs, and I now have a skin reddening/rash—like rosacea on my cheeks, and my upper arms are reddish—like a mild sunburn. I have tummy issues now—gurgling, diarrhea, cramping, etc., but they are easily managed with Imodium. Gleevec has extended my survival, and I had the honor of meeting Dr. Druker, who developed the drug, at Oregon Health and Science University. He was absolutely wonderful, as was the care I received there."
For Chronic Myelogenous Leukemia "I have been on Gleevec for about 5 1/2 years. It has completely controlled my CML; my oncologist says that there isn't any sign of cancer now. I have had complete remission. I had just about all side effects the first month I was on this medicine, but they all stopped. This is truly my miracle drug, a gift from God. I recently had my quarterly checkup, and my doctor told me there had been follow-up studies done, and the people that came off Gleevec had the CML return, so I guess that means you're on it for life. The only downside is the cost, but thank God for my job and insurance, because it is covered. I guess other than that it is no different than taking insulin for life, except the cost."
For Gastrointestinal Stromal Tumor "I had a 5 cm gastrointestinal stromal tumor removed from my stomach about a year ago and have been on Gleevec 400 mg since Nov. 2012. Main side effects are occasional muscle cramping that can be intense, mild periorbital edema, and mild to moderate nausea. Most worrisome for me is a very low ANC (absolute neutrophil count) that is being closely monitored."
For Chronic Myelogenous Leukemia "I was diagnosed with chronic myelogenous leukemia (CML) in June of 2010. I have been on Gleevec for about a year and a half now, as Tasigna did not work for me. I have had various side effects like others (i.e., swelling in the face, diarrhea, body sores, and muscle aches). Thank heaven I did not lose my hair. The worst is the sores in my mouth that I cannot get rid of, and the doctors do not find anything to give me any relief! If I had to pay for the medicines myself, I could not do it, but with my wonderful insurance, I am able to take the medicines and live a good life. Otherwise, I do not know where I would be without it. I just got married in August 2012 to my soul mate, and this medication gave me a new lease on life!"
For Gastrointestinal Stromal Tumor "In April of 2012, I was diagmosed to have GIST high grade by my Doctors. The tumor was resectable and it was removed immediately. My surgeon removed 80% of my stomach and I find it successful operation. My Oncologist prescribed Glivec (Imatinib) 100 mg x 4 tabs a day for two (2) years from August 24, 2012 to August 24, 2014.I had my PET Scan every six (6) months for the surveilance of possible tumor recurrence, PET scan was stopped in 2015 since the tumor did not recur until now. It was hard in the first 2 months since my skin had discoloration and allergies but I beat them all. I live a happy life with my family with prayers with the Lord above. Glivec is a wonderful cancer drug but it was so expensive. GOD SPEED."
For Chronic Myelogenous Leukemia "My doctor put me on Gleevec when I was diagnosed with CML five years ago. It has saved my life. I have experienced some of its side effects, such as nausea and vomiting, and continual leg pain, but the benefit of living far outweighs any of the bothersome side effects!"
For Acute Lymphoblastic Leukemia "I've been taking Gleevec since 2008. I'm 24 now in February 7 2015 I live a normal life. Gleevec and Stanford hospital saved my life I'm 24 now just a kid but I've walked the line and back again I have (all) with ph chromea zone I've done extensive therapy. lucky to be here I'm the light at the end of the tunnel don't give up you can do it my friends my heart goes out to all of my fellow fighters."
For Chronic Myelogenous Leukemia "Taking since early clinical trials in 2000. CCR within about 1 year and steady for the last ~10 years. Had the usual side effects at first, but now all gone except I find I cramp easily (can't tell if Gleevec is the cause). Biggest problem with nausea went away as soon as I switched to the 100 mg tablets in place of one 400 mg."
For Chronic Myelogenous Leukemia "I have been on Gleevec now for 6 months and in that time I have had maybe 5 well days, the other days have been filled with vomiting, nausea, body aches & pains, migraines, lethargy, insane amounts of facial swelling and my weight is just up & down like a yoyo, varying from 82kilos down to 75. I now realize that when I said this wasn't the right medication for me 5 months ago I was right. Today my hematologist told me that my Philadelphia gene is unacceptably high, so now I am going to try something else. I am delighted to hear that others are doing so well on it but it certainly wasn't for me"
For Chronic Myelogenous Leukemia "The first 6 months I had a lot of bone pain and jerking reactions. Both have subsided. I do occasionally have those reactions, but very seldom. I was told just recently I am in remission, it took 2 1/2 years. The biggest down side is the cost. I did not get upset learning about my leukemia, but cried when I found out about the cost. I get help with my insurance and I am so thankful for PSI giving me some help with it as well. "
For Chronic Myelogenous Leukemia "I have been taking Gleevec for over 4 years, and as of today, I am in complete remission of my case of CML. For the first 4-5 months of treatment, Gleevec apparently caused nausea, especially when I engaged in any vigorous physical activity. Now I have no noticeable side effects at all."
For Chronic Myelogenous Leukemia "After being diagnosed with CML about 4 years ago, I began taking Gleevec 400 daily. The first couple of months were the most difficult. I personally was nauseous and had diarrhea. Things seemed to settle down. I now have swelling in the face, especially in the eye area, which in turn creates migraines that are now controlled by medicines. I also still have the occasional diarrhea bouts. I am thankful for Gleevec, as my BCR able has been less than 01%, pretty much full remission."
For Chronic Myelogenous Leukemia "Started Gleevec at 400 mg Feb 2017. Due to the numerous side affects (think I have them all) it was reduced until finally stopped. In late February 2018 as my body and mind were in bad shape. Had to give up physical therapy as body now too weak. What is scary, as of 6/24/18, still have all of the side affects. Blood reports getting worse. No relief in sight. New sores still showing up-takes months to heal. Still sleep in a stuffed chair due to constantly being awakened for trips to bathroom to medicate/treat something. Guest bath looks like a pharmacy with pills, powders, creams and bandages-most of them Dr ordered or recommended. Have not gotten 3 straight hours of sleep in months-has not happened this year. I sense Dr's being frustrated-if pill has stopped, why hasn't side affects?"
For Chronic Myelogenous Leukemia "I have been on 400mg Gleevec for a little over a year. The side effects were hard the first couple months, but now I feel great and my the side effects are only rare digestive issues and headaches. My blood cell counts have been at, or close to normal for the last year, and my last bone marrow biopsy reviled that my cells containing the Philadelphia chromazone had gone from 1 in 2 to 1 in 50. They have also found out I have fibrosis of my bone marrow and are unsure if it's caused by the medication or the CML."
For Chronic Myelogenous Leukemia "I have been on Gleevec for a year now. I started with 400mg but could not tolerate it so dropped to 300mg. I am in remission but nausea has become a problem. Taking antinausea meds but still nauseated most of the day. Lorazepam helps but wish I felt better without all of this. Glad to be alive though."
For Gastrointestinal Stromal Tumor "I had a large Gastrointestinal Stromal Tumor (gist) removed from the stomach in 9/2015. I was put on 400mg Gleevec but had to stop early on due to a low white count; was tested weekly and restarted with no issues in the white count. A CT scan in 2019 was clean. Side effects are diarrhea, runny nose, vomiting (early on but no longer), weight gain, and now vision changes. I'm currently seeking an oncology doctor as my neurologist is setting up an MRI to rule out optic nerve issues. He believes Gleevec maybe be the cause. I've been on it for 5 years now @400mg per day. Happy to be alive!"
For Chronic Myelogenous Leukemia "Was diagnosed with Chronic Myelogenous Leukemia (CML) in Feb 2011, Gleevec worked for me for about a year and a half. I threw up almost every night on it. I had a rash all over my body when I first took it but that went away over time. Gleevec stopped working for me and my BNR jumped from 3 to 19. Dr switched me to Sprycel."
For Chronic Myelogenous Leukemia "The drug has been effective but since Medicare coverage changed this year the out of pocket expense of $2k / month makes it not affordable. The best hope was the copay program offered by Novartis but since I have a Part D plan (as bad as it is) I do not qualify for that. Oh well, I had a good run. Hopeful that it somehow stays in remission, but if not hopeful that it does not drag out."
For Gastrointestinal Stromal Tumor "Diagnosed with large Gastrointestinal Stromal Tumor (Gist) (27/30 cm) which was completely removed in 2019. I have been on Imatinib 400mg on and off since February 2020. Due to the side effects I am now on 300mg. I'm able to tolerate it better although side effects are beginning to show. May have to take a break from the imatinib. Scans have been clear so far."
For Chronic Eosinophilic Leukemia "Been on Glivec 100mg since June 2011 for Chronic Eosinofiliac Leukemia. Side effects comprises muscle cramps, tiredness and persistent cough. Has reduced my white cell count from 13 to <0.6 I have reduced my level to 50mg or half a tablet and my blood counts have remained stable over a 10 month period. I did this to aleviat the cramps and cough. Helped the cramps but not the cough. I still get tired but not as tired as I was prior to the medication."
