Thanks, Millie! It made me feel great! Michele
On Wed, Sep 18, 2013 at 2:19 PM, C.M. Houtz <[email protected]> wrote: > ** > *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 <[email protected]> > *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<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. > > -- > -- > [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.
