jeanie, I just took off two months from sprycel, after two years on it and elevated CPK the whole time.....It took that long for my numbers to right themselves, but am now out of maj. molec. remission so back on meds I go...we decided to try bosutinib...starting tomorrow...there is also ponatinib...so there are more resources options out there... you are a CML warrior...but even warriors hold the wish for you and all of us......major molecular remission....on going without too many side effects... take good care, Beth
-----Original Message----- From: ICANDOALLTTC <[email protected]> To: cmlhope <[email protected]> Sent: Mon, Feb 4, 2013 10:13 am Subject: Re: [CMLHope] ultrasound of abominal aorta ? Hi Beth, good to hear from you. No I have never taken a med holiday but was taken off Tasi for a week when I had to have blood transfusions. I am on Sprycel now, and was thinking about asking my onc if I could go on a holiday. It's just that I've been out of remission so bad that I've had to have those awful blood cleanings and I don't like that at all. Yes, we all have reactions to these meds and have to handle the side effects as best we can. Thanks for thinking of me. Jeanie<3 In a message dated 1/27/2013 6:23:44 P.M. Eastern Standard Time, [email protected] writes: Dear Jeanie, I am sorry you are having difficulties. I wanted to throw my two cents in and say I concur with Patrick. My oncologist has had me do twice yearly echocardiograms while on these meds when not symptomatic, more frequntly when symptomatic along with ECG's...These meds can affect the heart, or it could be totally unrelated...but important to see a heart specialist you can trust...thinking of you .....am wondering when or if you have had a drug holiday...to give your body a rest from meds?and see if the pain goes away without the drug?? If your symptoms got worse after uptaking Tasigna, what about talking to your oncologist about the other options now available? Just a thought. Take good care.. Beth -----Original Message----- From: patrickemailguard-goog <[email protected]> To: cmlhope <[email protected]> Sent: Sun, Jan 27, 2013 4:50 pm Subject: Re: [CMLHope] ultrasound of abominal aorta ? Jeanie, Since you've taken it you know they do ECG's on Tasigna patients excessively. That's because Tasigna can cause prolonged QT syndrome which basically means the heart is still in the relaxed phase of its cycle when the next signal to contract comes. This can cause atrial fibrillation commonly referred to as a heart attack. I think it would be prudent for your oncologist (or you) to refer you to a cardiovascular specialist. Patrick --- On Sun, 1/27/13, [email protected] <[email protected]> wrote: From: [email protected] <[email protected]> Subject: Re: [CMLHope] ultrasound of abominal aorta ? To: [email protected] Date: Sunday, January 27, 2013, 3:21 PM Hi Marty and will do. He does an ultrasound of my heart yearly but don't know if that includes the aorta scan or not. I'll ask him. He is aware of my heart beat and pain; just can't figure it out. I have heard that a bulging aorta can cause those symptoms also. Actually the pain go really bad right after I went on Tasigna. The doctor put me on Tramodol for pain and did a MRI. Nothing showed up. It strange. Maybe the aorta scan might show something. Thanks again, Jeanie<3 In a message dated 1/26/2013 11:35:24 P.M. Eastern Standard Time, [email protected] writes: Hi Jeanie, The Warferin did make that beating go away. It wasn't so much the pain just like a very uncomfortable feeling. I think that you should discuss this with your doctor. You should get an ultrasound to see what if anything is going on. 18's Marty On Sat, Jan 26, 2013 at 3:07 PM, <[email protected]> wrote: Hi Marty, did the warferin take care of your problem and did the beating in your abdomen go away? I also have pain in that area? Did you have pain? Just wondering if all will go away if that's the problem. Thanks so much. Jeanie<3 In a message dated 1/26/2013 10:34:11 A.M. Eastern Standard Time, [email protected] writes: Wow! that is good to know. Thanks so much. I will have the ultrasound and see what it shows. Sounds like a good plan. Thanks again, Jeanie<3 In a message dated 1/25/2013 3:50:48 P.M. Eastern Standard Time, [email protected] writes: HI JEANIE, THERE WAS A TIME THAT I ALSO FELT MY HEART BEATING IN MY ABDOMEN. IT DROVE ME CRAZY UNTIL I HAD AN ULTRASOUND OF MY ABDOMINAL AORTA THERE WAS A SMALL BLOCKAGE THAT WAS TAKEN CARE OF BY WARFERIN. WHICH IS A BLOOD THINNER. 18'S MARTY On Fri, Jan 25, 2013 at 10:59 AM, <[email protected]> wrote: Hi Doris, Yes I have had all those symptoms and much more. I never reached remission on Gleevec and had a terrible time until I went on Sprycel. My blood pressure always runs a little high; doc wants me to take BP meds but I have tried them and don't do well on them. The last one I took was Aetenol; gave me heart pains. Have you tried walking and diet. Walking seems to help. A diet low in animal foods, with lots of fish, fruit and veggies may help also. Exercise in moderation is good. One side effect that I had right before my dx was that I could feel my heart beating in my tummy on the right side. It still does, and they don't know why. Good luck and so glad you are in remission. Jeanie<3 In a message dated 1/24/2013 11:01:12 A.M. Eastern Standard Time, [email protected] writes: Hi, my name is Doris I don't get on that much but I read often. I'm having trouble with my blood pressure. On gleevec 100mg six a day. Been in remission since 2002. Now my blood pressure out of control. Dr just up my lisinopril to 10mg twice a day with a water pill. The lowest its been so far is156/84.I get dizzy. Light headed and racing heart rate. I totally. Feel weird. And can tell when it spikes. Anyone else having this problems. -- -- [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 -- -- [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 -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. 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