Gleevec for Chronic Myelogenous Leukemia User Reviews

• Charl...
• Taken for 5 to 10 years
• June 22, 2013

"I have been on Gleevec since 2/2006. My white blood cell count went from 350,000 to 75,000 in less then three months. I went into full moleculer remission by 2/2007. Have the BCR-ABL blood test every 6 months and there is no more Philadelphia Chromosome since. I still can get nauseated and once in a while 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 would have had a bone marrow transplant. This medicine is a 95% chance of survival and I'm just about to that magical mark of 10 years on the medicine."

• charlie...
• September 21, 2013

"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."

• captc...
• March 19, 2012

"I was in one of the first studies on Gleevec (STI571). I started on Feb. 5th 2000. It has been a life saver. Some side effects but it's better than being dead. The cost is high but it is was it is to stay alive. Was in remission less then 6 months, I have been on 300 mg all these years. "

• terri...
• September 7, 2008

"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."

• Anonymous
• March 13, 2009

"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 check up, 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."

• OK...
• January 9, 2013

"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 give me a new lease on life!"

• fancy...
• January 12, 2010

"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!"

• Anonymous
• January 10, 2010

"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."

• Lucky...
• October 10, 2011

"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 100mg tablets in place of one 400mg."

• chellyh
• November 22, 2012

"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"

• Dina...
• January 4, 2012

"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. "

• Dean...
• April 8, 2011

"After being diagnosed with CML about 4 years ago. I began taking Gleevec 400 daily. First couple months were 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, in turn creates migraines which now are 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. "

• nate
• Taken for 6 months to 1 year
• June 24, 2018

"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?"

• Anonymous
• December 28, 2010

"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."

• Cali
• Taken for 1 to 2 years
• February 25, 2015

"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."

• nerdy...
• Taken for 1 to 2 years
• January 9, 2014

"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."

• Anonymous
• Taken for 10 years or more
• February 2, 2016

"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."

• Rhonda
• Taken for 1 to 2 years
• October 20, 2023

"I was diagnosed with CML in 1997. I have been on interferon treatment for CML until 2022 when I had to switch to Gleevec because they no longer make interferon. Gleevec caused my hair to thin, horrible gastric issues. Mainly severe gas after taking it. Although I take it with a full meal and a full glass of water, I still suffer from stomach gas, flatulence, and at times diarrhea. Occasionally, puffiness under my eyes. Considering switching to another treatment drug for CML. The gas and flatulence are horrible. Beano and Extra Strength Gas X don't seem to help."

• Marie
• Taken for 10 years or more
• December 2, 2021

"I've been on Gleevec since 2007. Nausea was mild initially, but bothersome. Once I started to take it after the lunch meal, no nausea. I developed eye bleeds. Naturalpath suggested grapeseed extract. The supplement has prevented further eye bleeds. I did 3 trials of Gleevec cessation. Each time BCR-ABL returned, each time sooner and higher percent of its' presence. Gleevec was restarted. During 3rd attempt, joint pain and swelling developed with a vengeance (tki - Tyrosine kinase inhibitor, withdrawal syndrome). 3 months after resuming Gleevec, symptoms persist. Feels like I developed rheumatoid arthritis (this diagnosis ruled out by Rheumatologist). Prednisone helps the best, but the therapeutic dose raises my blood pressure. How are others with lingering tki withdrawal syndrome managing the symptoms? Any recommended reading for trial Gleevec cessation protocols?"

• Dotti
• September 12, 2014

"I've been taking Gleevec for a year now, at first I was very tired but now I'm taking a multivitamin but I've notice that my skin coloring has changed. I'm concerned a brown skin woman but now my skin has lighten so much until I'm wearing makeup for very light skin women some days I have very little color and I look almost white. My doctor hasn't seen this before he said usually patients become darker."

• Ben
• Taken for 10 years or more
• August 1, 2023

"I've been taking this medication since 2005. I was 14 when I was diagnosed with CML. I am now 34 years old and doing well. I have slight swelling around the eyes with muscle, joint, and bone pain occasionally. It has made me more fatigued. But overall, I believe this medicine has helped a lot. I recommend taking it before bed and eating before you take it. It seems to reduce nausea."

• Anonymous
• Taken for 10 years or more
• May 8, 2012

"I have been on Gleevec for about 10 years now, with absolutely NO side effects, except for one! After my hair grew back, it was curly all over my head. Makes hair styles quite easy at my age of 71."

• Anonymous
• September 23, 2008

"Gleevec has been a miracle drug for me, the side effects are minimal when you consider the outcome, if you don't take it. Thanks very much to the inventer of this medication."

• Anonymous
• May 13, 2011

"It really does help if you stick to the plan. I didn't and now I feel lots of different pains and also my condition is progressing."

• brandi
• Taken for 1 to 2 years
• December 20, 2023

"Gleevec is the best one so far. It has the least side effects. Seems easier on my body. I hope I'm able to stay on it."