Thanks Beth, Yes I have asked my Onc to lower my dose, but he says if it isn't broke don't fix it. I go to the Moffitt Cancer Center and they are a research facility but my onc didn't mention the other drugs. I think he is happy I am in remission and Sprycel was the only drug that put me in remission. He also said none of his patients have had PE and that is something I should no worry about, but I do as I have heard bad stories about it. Does Sprycel come in 40 mgs? I have 50 mg tablets. They tell you not to cut them. Thanks again, Jeanie<3 In a message dated 9/4/2012 11:33:57 P.M. Eastern Daylight Time, bkbar...@aol.com writes:
HI Jeanie, thanks for sharing. I am so sorry you have had such a hard time of it. Sprycel is a very potent drug. 300X plus that of gleevec. Your side effects seem to suggest a lot of toxicity. Have you had a second opinion regarding dosage? I don't know what other's feel, but I think when we have a very hard time with the drugs, another pair of expert eyes and ears can sometimes help us. I don't know what is best for you, but 100 mgs is now the standard doseage of sprycel, it used to be much higher until their research showed that more of the drug produced serious side effects more often without any added benefits of remission. Many people take 50, or 70, 80....I'm doing 40 right now...a slightly less dose seems to make a big difference in side effects in most people. The plureal effusion..risk also lessons with a lesser doseage.... also, just an FYI in case you may not know..., ponatinib is now available for compassionate use, it does not seem to have the same level of PE risk. Compassionate use is if you are intolerant or resistant to the three other drugs. You qualify. The drug company appears to be being quite generous with it's use right now. They have rapid access for those who need it. For all of us out there, we need to keep ourselves and each other apprised of options ...as we come to know them.. there is hope....and blessings that we have each other....and the constant research that supports more and more options...may you feel some relief from your toxicity... Peace.. Keep us posted. hug,....Beth -----Original Message----- From: ICANDOALLTTC <icandoall...@aol.com> To: cmlhope <cmlhope@googlegroups.com> Sent: Tue, Sep 4, 2012 2:43 pm Subject: Re: [CMLHope] Re: stopping meds. Hi Beth, I was started on Sprycel after the two other drugs, Gleevec and Tasigna just quit on me. They started me on 300 megs and my counts started dropping rapidly. Then I was put on 100 mgs daily and it put me in remission in 3 months. All this while they were doing bone marrow checks every month. Some of my side effects are: heavy heart beat felt in chest headaches daily pain in my right side tired weak My blood pressure has gone up lately also. I am worried about PE. Hope this helps Beth. Jeanie<3 In a message dated 8/29/2012 10:49:15 A.M. Eastern Daylight Time, bkbar...@aol.com writes: Carolyn, Have you had plural efusion before? Since you have been on a low dose of sprycel for years, has this happened before to you? ARe you on a diuretic on a regular basis? I am on sprycel as well, have been for the last two years. concerned about swelling, but manage it through diuretic and potassium. just wondered what your history has been? How is your muscle fatigue on the sprycel? thanks for the info, helpful to me to talk withothers on the same meds. Beth -----Original Message----- From: TEDBDD <ted...@aol.com> To: cmlhope <cmlhope@googlegroups.com> Sent: Tue, Aug 28, 2012 7:48 am Subject: Re: [CMLHope] Re: stopping meds. Richard....I am totally with you and your decision. The longer I live with CML the more I understand that there are few "givens". Each of us reacts differently to the TKI's and we must make individual decisions. Like you, I am so grateful for these amazing drugs that have enabled us all to enjoy life in a way not possible 20 years ago. All the best in your journey. Tom in KY In a message dated 8/27/2012 11:50:47 P.M. Eastern Daylight Time, richard1huff...@comcast.net writes: Each of us need to do what is best for that person. My situation is being monitored by some of our best specialists. I have other major medical problems that are being monitored also. I have a heart issues, lung issues from three bouts with pnemonia when I was young and 40 years of smoking. Some of the newer meds are under consideration but with Gleevec's history of complications compared with the newer meds know problems to date makes me pause and ask a lot of questions about what would me right for me. I smiply post what is happening to me without recommendation what would be right in anyone else's situation. The one problem I can help address is that CML is becoming a lifetime condition and not the death sentence is used to be. We are so fortunate to have some of our members that survived until the need meds were found. They are my strength to challange CML headon in a different direction than most CML Specialists and CMLer's. Shortly after my diagnosis I discussed whith my ONC about participating in the trials of available other that Gleevec. He advised me to take Gleevec as it wasn't my time to be in trials but someday I would have my turn. I am 4 years and counting to see if my body can control CML at a low level. That in itself is a miracle considing when you consider I was given a 5 - 10 year lifespan and now I will die of something else. Life, Richard H. On Monday, August 27, 2012 3:49:53 PM UTC-5, jku...@wi.rr.com wrote: Hi CML Group. I haven't posted in a long time but the lastest post about not taking meds interested me. I have been on Sprycel 20mg bid for about 5 years. My onocologist checks pcr levels and also a fish test every three months. 9 times out of ten the CML is undectable but every once in awhile there is a very minute count. It tells me that the CML is just under the surface. I recently had to have a liter of fluid taken out of the plura around the lung from the sprycel. My onocologist told me whatever I do don't stop taking the meds. I assured him I would follow his directions to the "T" as I feel without these miracle drugs this would be a death sentence. That is why I was amazed that Drs. are recommending stopping the therapy. Maybe my onocologist is just being cautious. Carolyn Kuptz -- [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 CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [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 CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [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 CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [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 CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [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 CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope -- [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 CMLHope@googlegroups.com To unsubscribe from this group, send email to cmlhope-unsubscr...@googlegroups.com For more options, visit this group at http://groups.google.com/group/CMLHope
