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 -- -- [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.
