I have never written to you but my son has CML and has had it for 7 years and he is doing fabulously. He was diagnosed shortly before starting medical school and he is now a Dr. and in his last year of his medical residency. He was started on gleevec when first diagnosed and did well on it but after 4 years it quite working for him. They switched him to Sprycel and he hasn't had any problems at all. He has less bone pain and you would never know he has ever been ill. It they want to change you off of Gleevec have you asked them about Sprycel? I have seen a great difference in my son and he has been on the Sprycel for 4 years now.
Best of luck Penny MacDonnell From: [email protected] Date: Mon, 16 Aug 2010 16:55:18 -0400 Subject: Re: [CMLHope] Scared to switch to Tasigna To: [email protected] I was under the impression they wouldn't put you on Tasigna if you had a heart problem already. I would opt for Sprycel if I were you. Some people do really well on Tasigna, but with you already having a heart problem, I don't think I would want to be on it. Sprycel is the next line for treatment if you fail Gleevec. Talk to your doctor or see a specialist right away. Blessings, Jeanie<3 In a message dated 8/12/2010 4:15:01 P.M. Pacific Daylight Time, [email protected] writes: Hi everyone, I am hoping someone has thoughts to share with me. I was dx'd in February, started Gleevec 400mg and had unbelieveable results. PCRU at 4 months! However, also severe irritable bowel syndrome by 5 months! It started as gas, bloating, diarrhea and just got worse the longer I took Gleevec. Finally, it left me doubled up in pain any time I even tried to eat. Please understand I am not a lightweight...I am allergic to pain meds and local anesthetics, have done a root canal with no anesthetic at all! The IBS was severe. The gastro doc is certain it is the Gleevec. Immodium didn't relieve the diarrhea any more, nor did other meds relieve pain. Only pain relief was to not eat at all! Didn't matter what foods I ate or didn't or what time of day I took the Gleevec (with food and a full glass of water). Have been off of Gleevec for a week now and still working on getting bowels back under control, but thankfully the pain and bloating are gone. They want to start me on Tasigna next week and I am terrified. I already have a heart arrhythmia and the Gleevec has already elongated my QT...still within tolerance, but close. I am scared of dying from long QT, (with an arrhythmia already, how would I know I was having a problem) and barring that I am also scared of other side effects I am hearing about like migraine headaches, high blood sugar, rash....I am the sole support of four, so stopping work is not an option for me unless I would also like to stop eating and having a roof over my head! I want to live, but at what price? Has anyone else had such severe effects from Gleevec and found a way to improve them?? I really don't want to change if I don't have to. -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope
