Jackie
10-12-2004, 02:27 AM
Hello everyone,
I just experienced a huge traumatic event but I will be very brief. If anyone would like more info, I would be happy to go into details on another post or directly on email. This post is to warn everyone how important symptoms can be and to communicate, communicate, communicate them to your onc!!
I have mets to bones, skin, brain, and gemzar stopped working for me in Aug, so I began xeloda around Labor Day. I began to experience what I thought was heartburn, had the xeloda dose cut in half, and began to feel better in the last couple of weeks than I have since last spring. However, upon any exertion at all, I experienced "heartburn". During the 1 rest wk (xeloda is administered 2 wks on, 1 wk off), I could exercise without a problem. I had an appt w/ my onc last Thurs and told her about it. She questioned me closely concerning the "heartburn"....and I had to admit that I really had no 1st hand history of heartburn and had just assumed that that's what it was because it's listed as a side effect in the brochure. She referred me to a cardiologist immediately and I was scheduled for a stress test Fri AM. To say I flunked the test is an understatement....I went into full cardiac arrest and had to be resuscitated with the defibrillators!! I am 57, look younger, am active, and had no prior health issues til b/c. (Only good thing was I thought I just went to sleep, and woke up worrying that I was snoring because my mouth was open!) Felt fine after I "woke" up, went to hospital and had a heart cathertization which showed my heart was in great shape, so the problem was deemed electrical ...arrhythmia. Had to stay in the hosp all wkend hooked up to a monitor, and waited til this morning to repeat the stress test to make sure all the xeloda was out of my system. Everything went fine and I was released with no restrictions...except NO more xeloda. My point in asking everyone to read this is this: not recognizing and communicating a symptom I was having almost killed me. The problem (except for me and approx 1% of users) is not with xeloda...it was with ME!! My onc said that they had not seen anyone react this way on xeloda in their clinic, but my cardiologist has a contact at Sloan Kettering who said she had seen this before with patients on xeloda. Xeloda is a good drug and I know many of you have been and are currently on it. Please don't be frightened by my event...just be aware of what your body tells you, no matter what drug you're on!
Now, it's a beautiful day and I plan to go visit my horse with a few more carrots than usual...
Love to all,
Jackie
I just experienced a huge traumatic event but I will be very brief. If anyone would like more info, I would be happy to go into details on another post or directly on email. This post is to warn everyone how important symptoms can be and to communicate, communicate, communicate them to your onc!!
I have mets to bones, skin, brain, and gemzar stopped working for me in Aug, so I began xeloda around Labor Day. I began to experience what I thought was heartburn, had the xeloda dose cut in half, and began to feel better in the last couple of weeks than I have since last spring. However, upon any exertion at all, I experienced "heartburn". During the 1 rest wk (xeloda is administered 2 wks on, 1 wk off), I could exercise without a problem. I had an appt w/ my onc last Thurs and told her about it. She questioned me closely concerning the "heartburn"....and I had to admit that I really had no 1st hand history of heartburn and had just assumed that that's what it was because it's listed as a side effect in the brochure. She referred me to a cardiologist immediately and I was scheduled for a stress test Fri AM. To say I flunked the test is an understatement....I went into full cardiac arrest and had to be resuscitated with the defibrillators!! I am 57, look younger, am active, and had no prior health issues til b/c. (Only good thing was I thought I just went to sleep, and woke up worrying that I was snoring because my mouth was open!) Felt fine after I "woke" up, went to hospital and had a heart cathertization which showed my heart was in great shape, so the problem was deemed electrical ...arrhythmia. Had to stay in the hosp all wkend hooked up to a monitor, and waited til this morning to repeat the stress test to make sure all the xeloda was out of my system. Everything went fine and I was released with no restrictions...except NO more xeloda. My point in asking everyone to read this is this: not recognizing and communicating a symptom I was having almost killed me. The problem (except for me and approx 1% of users) is not with xeloda...it was with ME!! My onc said that they had not seen anyone react this way on xeloda in their clinic, but my cardiologist has a contact at Sloan Kettering who said she had seen this before with patients on xeloda. Xeloda is a good drug and I know many of you have been and are currently on it. Please don't be frightened by my event...just be aware of what your body tells you, no matter what drug you're on!
Now, it's a beautiful day and I plan to go visit my horse with a few more carrots than usual...
Love to all,
Jackie