I love ball room dancing and admire what you do. I'm sure that it made you feel good not being winded as much as your husband made you feel good. You keep it up....Hugs, Millie ----- Original Message ----- From: LearnToBallroomDanceOnline.com To: [email protected] ; [email protected] Sent: Wednesday, September 18, 2013 1:12 PM Subject: Re: [CMLHope] Re: Taking a Poll!
Thanks Beth! Apparently diuretics do not work on that type of water retention. Guess we will see. I danced last night and after an extremely strenuous Waltz, I realized that my husband was more winded that I was and this made me REALLY happy! Hope you have a great day! Michele On Tue, Sep 17, 2013 at 4:55 PM, <[email protected]> wrote: Thanks for the explanation of the 140 mgs. Very helpful. I wonder if you can absorb it well, if you can be on less of dose, achieve the drugs benefits for the cml and avoid the toxicity potentials that significantly increase on higher dosages...also, can you get ahead of the swelling issues by taking a daily diuretic of some kind, natural or otherwise??? Keep us posted.....your energy and attitude is great... -----Original Message----- From: LearnToBallroomDanceOnline.com <[email protected]> To: cmlhope <[email protected]>; peg.hss <[email protected]> Sent: Tue, Sep 17, 2013 1:52 pm Subject: Re: [CMLHope] Re: Taking a Poll! Hi Peg, Thank you so much for your reply! How long have you had CML? I so agree with what you say about these drugs not being around long enough to really know what they do to us, but I guess they will keep us around long enough for us to see! Your response is not the only one wondering why I was on such a high dosage , so I wrote a post in response explaining it! Thanks for the nudge! 140mg; Here is the Why Thanks again for your response, Michele On Tue, Sep 17, 2013 at 6:53 AM, peg <[email protected]> wrote: Michelle, I am curious why your doctor would want you on more than the manufacturer's recommended dose? The higher the dose the more likely that side effects will occur, and with Sprycel having the risk of Pulmonary Arterial Hypertension (PAH), a potentially fatal side effect, it seems reckless to exceed the recommended dose unless absolutely necessary. The recommended dose is 100mg a day...140 is only recommended for patients with AML or CML is blast crisis, which, with a zero PCR you are light years away from either of those! Even with the recommended dose at 100mg there are plenty of folks taking far less. I have seen dosing as little as 20mg daily or 70 - 100mg 2-3 times weekly. I consult with one of the research docs who helped develop Sprycel and he believes that the current data shows that CML response to the level of each dose better, as opposed to the quantity of doses, so with patients with severe side effects he will drop the number of doses per week before dropping the amount of each dose. But a dose higher than 100mg is still never recommended as a maintenance dose, that is just risking plural effusions and PAH. Not clear why your doctor would risk that, especially with your history! Personally, I have been on Sprycel for two years now and am thinking I am going to ask for a change to a low dose of Tasigna. I have been mostly PCRU for that entire time but have never found a dose of Sprycel low enough that will work but not put me in bed for the entire day each time I take it, not just fluish, but severe headache and body pain. At 50mg twice a week my PCR went up to trace, and when we upped it to 70mg twice a week a few weeks ago the side effects started escalating...don't know yet if that dose is even effective, but the longer I am on it the worse the side effects are with each dose. I think I am done with Sprycel. I personally don't think any of these drugs have been around long enough for doctors to realize that no one should be on a larger dose than absolutely necessary, and that each person's dose will be different. Don't let your doc OD you on Sprycel...PAH can be deadly, and most Sprycel patients who develop PAH don't even know they have it until it is nearly too late...patients are not screened nearly enough. I have a CML friend who almost died! Even on the low dose I have been on my cardiologist did a baseline angiogram and does an Echo Cardiogram every six months. Only you know your body, do what works for you, and question everything! Peg On Monday, September 16, 2013 12:36:57 PM UTC-7, Michele, Loves to Dance! wrote: Hi All, So, I began taking Sprycel again after pleural effusion. Taking a poll of what YOU think my dosage should be! Here are the facts: http://www.leukemiasurvivor.co/2013/09/back-on-sprycel-side-effects-return.html Thanks, hope you all are having a great day, Michele -- [email protected] www.LearntoBallroomDanceOnline.com -- -- [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. -- [email protected] www.LearntoBallroomDanceOnline.com -- -- [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. -- [email protected] www.LearntoBallroomDanceOnline.com -- -- [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.
