Hi Jeanie: My EKGs were okay, too. They only noticed a problem on an echocardiogram. They put me on Demadex and Aldactone (diuretics) and I lost 25 lbs. in 15 days! I felt great after that. I thought that cured the problem, but I was wrong. Truthfully, this kind of snuck up on me. I had no idea I was so sick. So, everyone, please don't ignore even what we would think are "minimal" symptoms. Fighting to the end!!! Kelly
On Feb 23, 5:06 pm, [email protected] wrote: > Hi Kelly and I am so sorry you are having such a time. > I have been on Sprycel for about 17 months now with no side effects to > speak of but I know what it can cause. I just had my EKG and he said > everything was fine. I will keep a lookout for what you are talking about > and > thanks for the warning. > Hang in there warrior. > Blessings, > Jeanie<3 > > In a message dated 2/21/2011 3:33:02 P.M. Pacific Standard Time, > > [email protected] writes: > > 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 [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
