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<http://www.leukemiasurvivor.co/2013/09/why-140mg-of-sprycel-explanation.html> > > 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/ba**ck-on-sprycel-side-effects-ret**urn.html<http://www.leukemiasurvivor.co/2013/09/back-on-sprycel-side-effects-return.html> >>> >>> Thanks, hope you all are having a great day, >>> Michele >>> >>> -- >>> Michele@**LearntoBallroomDanceOnline.com >>> www.**LearntoBallroomDanceOnline.com<http://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<http://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.
