Dear Kelly, I reiterate that all decisions about your care are yours to make. One half dose of tasigna gave me an eye bleed right after my first brain bleed. Realize your life is yours and the docs don't care as much about it as you do. You are well able to go with monthly or every three month bcr/abl tests to keep an eye on your log reduction. You are Not going to lose your remission quickly. It seems that you should let your body rest for as long as possible before going back on the medicine. I have been off gleevec for four years now and still not taking anything. I am still in cellular remission and get tested every 3 months to see where I'm at....With all your problems honey, I sure would enjoy life awhile without treating the leukemia. Try to work on your bucket list while not on medicine for CML. That's just my opinion. Your story makes me even more reluctant to try sprycel as my docs recommend. I hope that new one they are working on will have less side affects.
Blessings, Susan from Indiana -----Original Mer kEssage----- From: patrickemailguard-goog <[email protected]> To: cmlhope <[email protected]> Sent: Mon, Mar 21, 2011 2:13 pm Subject: Re: [CMLHope] HELP! Kelly, There's no two ways about it. All decisions about your care are yours, not your doctor's. To answer your request; I was on Gleevec/imatinib for about 3 1/2 years. Gleevec stopped working for me and I started Tasigna/nilotinib a month ago. I am taking the "standard" dose of (2) 150 mg capsules twice daily (600 mg/day total). This even though the literature indicates that an NNRTI I take (Viramune/nevirapine) an inducer of CYP450 3A4 may decrease the plasma concentrations and pharmacologic effects of Tasigna. So a higher than standard dose might be indicated but my hematologist-oncologist indicated basically that if standard dose Tasigna doesn't work for me she will refer me to M.D. Anderson. My one-week results - WBC fell from 65k to 30k. I should have my 3-week results in a day or so. But I can tell from my internal "leukemia-ometer" that things are going better. The reason I have labs already is also a reason I would be concerned about maxing-out Tasigna: I have had base-line, one and three-week EKGs because the major although uncommon adverse reaction to Tasigna is QT prolongation. >From Tasigna.com, "Tasigna can cause a possible life-threatening heart problem >called QT prolongation. QT prolongation causes an irregular heartbeat, which >may lead to sudden death." I don't know if there is any correlation between pulmonary hypertension and risk of QT prolongation but it's a question I have to have answered if I were you. Oh yeah, side-effects wise, Tasigna has been a cakewalk compared to Gleevec so far for me. Although taking Tasigna twice a day on an empty stomach and my HIV meds twice a day with food has meant that's ALL I do. I've come up with a wrinkle where I am going to get up in the middle of the night and take Tasigna and go back to bed so that I just eat my evening meal at slightly European hour and can even have a cookie or two while I'm watching TV. Hang in there, Patrick p.s. The weather in Galveston has been it's-worth-a-hurricane-in-your-lap-every-couple-of-decades GORGEOUS! It's important to enjoy what we're given along the way. --- On Mon, 3/21/11, kellyelise <[email protected]> wrote: From: kellyelise <[email protected]> Subject: [CMLHope] HELP! To: "CMLHope" <[email protected]> Date: Monday, March 21, 2011, 12:31 PM Hi folks: I don't know who has read my previous posts, but, I am asking for some help here. I was diagnosed with pulmonary hypertension as a result of taking Sprycel. My heart is severely damaged to the point where it cannot pump enough oxygenated blood into my lungs. I know have a Hickman catheter in my chest and have to carry around a bag with a pump that continuously supplies Remodulin to my heart in an effort to control the pulmonary hypertension and hopefully remodel my heart. This appears to be a lifelong device that I will have to learn to live with. So be it. That said, I have been off Sprycel since December. My bloodwork is now coming back "weakly positive" on the BCR/ABL. The onc wants to put me on max dose of Tasigna. Of course, since I could not tolerate Gleevec and obviously could not tolerate the Sprycel - I am highly resistant to his approach. In private, my nurse practitioner told me that not one oncologist at Cleveland Clinic will treat CML at low doses. I told her that I know of people in my CML support group who are on low doses. She asked me to get as much information as possible so she can present my case. If any of you would please email me your situation and why you are on lower doses of the CML drug you currently take, I can cut and paste the info into an email to send to my NP (you can leave out all details that would violate your privacy) - but please list your doctor's name, phone number and address, so she can contact him/her to further my cause. Also, if anyone has any information regarding Dr. Druker - especially phone number or email address - I would very much appreciate it so I can forward it to my NP. She doesn't have time to research these issues and she asked me to get as much information as I can and forward it to her via email. Any studies he is currently involved in - links to websites - the whole shmiel, I would be eternally grateful. Keep Fighting Warriors - I intend to!!! :) Kelly [email protected] -- [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
