Hi Folks: I thought it prudent to advise those who are on Sprycel about my current situation. This may not apply to any other Sprycel user, but, being informed is forewarned.
Gleevec caused serious vision problems for me, so it was discontinued after 8 months of therapy. I was then started on Sprycel and continued it for a year and a half. I had a perfectly normal echocardiogram in 2008. I just spent 7 days in the Heart Failure Intensive Care Unit at Cleveland Clinic. I have been diagnosed with pulmonary arterial hypertension. The right side of my heart is very weak and the pressures inside the heart chamber prevent my heart from pumping enough oxygen/blood to the lungs. I complained for months about my weakness and inability to even walk short distances - like from the scales at the doctors' office to the exam room. It would wax and wane but progressively got worse. No one listened. I was told I looked "great." I am 51 years old and basically I'm screwed. Eventually, an echocardiogram showed fluid around the heart (common in Sprycel users) and a pulmonary embolism (blood clot in the lung). After a multitude of tests, they suspected pulmonary arterial hypertension. A heart cath was scheduled. The heart cath confirmed their suspicions and a Swann-Ganz catheter was placed into my right carotid artery for continuous infusion of Remodulin. Then, they implanted a Hickman catheter into my chest so I could continue continuous intravenous infusion at home. The side effects were miserable at first, but I am getting used to it. My legs ache miserably, so standing for any length of time is torture. My hands will intermittently hurt. Taking a bite of any food sends an explosion of pain in the mandibular joints but that recedes as you continue eating. Headaches are the pits. The worst part? I am hooked up to this pump that weighs a couple of pounds for the rest of my life. I have 5 minutes to hook up another pump in case the pump in use should fail. If I were to get into an accident and EMS were to use my Hickman for medication administration or blood draw - it will kill me. I can't go swimming, take a bath, but finally, I think, I can take a real shower instead of soaping up in the tub and pouring cups of water on myself to rinse off to avoid infecting the Hickman. Sepsis is a constant threat. I called my oncologist since I've been off the Sprycel since December to see if they could see me on the same day I see my pulmonologist. I was told there isn't "much more" they can do for me, so no appointment was made. The cardiologists say the Sprycel caused the heart damage/ PAH - the oncologists, at first, denied it. I am writing this to warn all Sprycel users, if you experience ANY shortness of breath, trouble climbing stairs or notice you are sitting/ resting more - please, please, please demand an echocardiogram at least to check out your heart. This condition can be treated with oral medication if caught in the early stages. Since my symptoms were ignored for so long, I am in the latter stages and require the more complex administration of medication which is challenging physically, mentally and quite technical. Probably, eventually, I will require continuous oxygen. The PAH will probably kill me before the CML. I'm angry, but I also know that PAH is very hard to diagnose. It used to be treated with a heart and lung transplant not that long ago. HA! Like I'd be a candidate with CML. Please pay attention to any symptoms and don't back off on getting treatment. I was always told (even by phlebotomists!!) that I didn't look "sick," that I looked "great." That's part of the reason the disease is so hard to diagnose. If you have to pressure the doc for a referral - tell them what happened to me!! No, I don't have AIDS. I have never done crack cocaine. I have never done methamphetamine. Those are some of the causes of PAH. I'll stop now. I just want to help anyone I can avoid my situation. Take care Warriors!!!! Kelly -- [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
