Peter, suonds like you are being very thoughtful and proactive about your health... Iknow how hard that can be to keep up that path. You are being a great warrior!!!! You get the gold star today...just cheering you on........;0 Take good care. Beth
-----Original Message----- From: Peter <[email protected]> To: cmlhope <[email protected]> Sent: Thu, Jul 11, 2013 9:00 am Subject: Re: [CMLHope] Tasigna does not like me Thanks, Beth. That's very good advice. A good diet definitely makes a difference, especially watching the salt intake. I read the nutrition label on everything I buy and make my choices accordingly. That alone probably cuts the salt intake back by more than half! On Sunday, July 7, 2013 1:16:48 PM UTC-4, Beth wrote: Dear Peter, I am sorry you have to deal with " death panels" etc...on top of fighting a brave and good fight. Trust your gut about gleevec...Going up on gleevec sounds like you might experience more toxicity, but always an option.......sprycel, ponatinib, bosutinib....the companies that make them do work with people....and at least here, may give the drug out for compassionate use if someone does not have insurance, or if their insurance will not cover.,..it's worth having your oncologist call the pharma companies for you. Just so you know, sprycel at 70 is still a large dose...you may find at 50 you do well....and regarding the pleural effusions..I am scared too...but less likely on a lower dose, and being proactive and taking some diuretic ..they put me on 20 mgs furosimide ( lasix sp?) and 10 of potassium as prevention for swelling....Pat had a great idea regarding the CML Society of Canada, ....they can help you regarding good information regarding where you live...for those of us with high degrees of toxicity to the drugs, shooting for Complete remission is not what matters, trying to get into a MMR, if possible and staying steady is all that matters..steady numbers not trending upwards is good.....trying to living well with the cancer is a good goal.. , as long as you can get it stable and under control. Then we all worry less...if you have been readin ghere for a while you will note that dietary changes seem to really help people, and that also affects swelling.....processed foods, high salt content, verses fruits and vegetables lean proteins..etc...have a huge impact on health... Please keep us posted. Beth -----Original Message----- From: Pat Elliott <[email protected]> To: cmlhope <[email protected]> Sent: Sat, Jul 6, 2013 2:59 pm Subject: RE: [CMLHope] Tasigna does not like me Hi Peter – My suggestion is that you get in touch with the CML Society of Canada for more information and support. Website: http://cmlsociety.org/ Email: info(at sign) cmlsociety.org Phone: 1-866-931-5165 Toll Free Best regards, Pat From: [email protected] [mailto:[email protected]] On Behalf Of Peter Sent: Saturday, July 06, 2013 12:39 PM To: [email protected] Subject: Re: [CMLHope] Tasigna does not like me Hi Beth and thank you for your reply. I suppose another option would be to go back to Gleevec at a higher dose and see what it does. My gut feeling tells me that this would be a long shot. Sprycel seems to be the next logical step, but the pleural effusion etc. just scares the heck out of me. But, as you said, maybe trying it on a low dose like 70mg for a start makes the most sense. There is another issue though: you might remember all that talk about "death panels" during the Obamacare debate. At that time I dismissed that as nonsense. Turns out, I was wrong. Death panels are alive and well in Ontario. The Ontario drug plan for seniors pays for only two out of the three drugs, i.e. if you made the wrong pick the first two times, they won't pay for the third one. Since my private health plan comes to an end in three years when I turn 65, this will be an issue. The cost of the drug will be higher than my pension income. So, there is a lot of thinking I have to put into this decision............. On Saturday, July 6, 2013 2:39:20 PM UTC-4, Beth wrote: I just wanted to welcome you Peter to the group. I am sorry you have had such a hard time with Tasigna. sounds really challenging. I did not have those problems with tasigna, I had pancreas and liver enzyme elevations that took me off of it. so I don't know what to say about your specific problem. There are other options to try....Sprycel is 300X plus more potent than gleevec, one of the positives of it, and many people are able to use much less than a whole dose and have achieved MMR or CMM on it. It has it's issues for many people, but for some, lower doses are very effective and produce less side effects. Mostly I am holding hope for you that you can find the right med for you at the right dose that will work best for you. My only thoughts with your toxicity profile, and I am no doc, just my personal experience, is If you do try a new drug I would encourage starting with a lesser dose, do blood work in a month, assess, and go from there,..perhaps titrate up to what your body can tolerate, or stay at alower dose if the trend says it's working......It seems that if we start high and get very toxic, lowering dosages when the body is already under distress causes more problems than clearing the body of the old drug, and starting with a solid but lower dose and going up from there...Other's might disagree...it's just based upon the individual... your heart side effects are worrisome....so the three other options out there may be a thought! Take care, Beth -----Original Message----- From: Peter <[email protected]> To: cmlhope <[email protected]> Sent: Sat, Jul 6, 2013 10:54 am Subject: [CMLHope] Tasigna does not like me Hi everybody :) After reading your posts for a few months, I thought it is time that I introduce myself. My name is Peter (62), I am from Whitby, Ontario. I was diagnosed with CML in May 2010. It took me about a year to get used to Gleevec, to the point where I could (kindof) live with it. At the end of two years, the only remaining issues were chills, muscle cramps and some fluid retention. The problem was, it did not get me any higher than a 2.7 log reduction - close, but no cigar. I switched to 800mg Tasigna, which got me up to 3.4 log within three months. But I could not tolerate the high dosage, so we lowered it to 600mg. Now I am stuck at a 3.0 log reduction, but Tasigna appears to be doing a number on my cardio - hypertension, palpitations, fast pulse, irregular heartbeat. I take Proprapnolol, Cilazapril, Hydro and the occasional Ativan to keep a lid on these issues, but with limited success. In addition, I am also experiencing extreme fatigue and weakness. Has anybody here had these kinds of problems with Tasigna? If yes, I would be really grateful for any helpful hints you can give me. -- -- [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 --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/groups/opt_out. -- -- [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 --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/groups/opt_out. -- -- [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 --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/groups/opt_out. -- -- [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 --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/groups/opt_out. -- -- [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 --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/groups/opt_out.
