Imatinib and Swelling: What Users Say

• che...
• November 22, 2012

Imatinib 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 and pains, migraines, lethargy, insane amounts of facial swelling, and my weight is just up and down like a yo-yo, varying from 82 kilos 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."

• Ton...
• October 29, 2013

For Chronic Myelogenous Leukemia "I have been on Gleevec since March 2007 when I was diagnosed with Chronic Myelogenous Leukemia. I was sick for about 4 months on this drug with nausea, leg swelling, pain so bad that I felt crippled by the end of every day, and headaches. I had these symptoms even while taking Zofran with the drug. My doctors at MSKCC told me to hang in there, saying I was going to wake up one day soon and feel better than ever. And then, after 4 months, they were right. I remember that I woke up one morning, stretched my arms and legs and yawned, and saw the sun shining through my bedroom window, and I turned to my husband and said, 'I feel great'! I have pretty much felt great since then, and my life has thrived. I am not just a survivor, I am a thriver!"

• Mar...
• Taken for 10 years or more
• December 2, 2021

Imatinib for Chronic Myelogenous Leukemia "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. Naturopath 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 the 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?"