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] <javascript:>> > To: cmlhope <[email protected] <javascript:>> > 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 <javascript:> > Phone: 1-866-931-5165 Toll Free > Best regards, > Pat > > *From:* [email protected] <javascript:> > [mailto:[email protected]<javascript:>] > *On Behalf Of *Peter > *Sent:* Saturday, July 06, 2013 12:39 PM > *To:* [email protected] <javascript:> > *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] <javascript:> > To unsubscribe from this group, send email to > [email protected] <javascript:> > 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] <javascript:>. > 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] <javascript:> > To unsubscribe from this group, send email to > [email protected] <javascript:> > 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] <javascript:>. > 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.
