Hi folks: I don't know who has read my previous posts, but, I am asking for some help here. I was diagnosed with pulmonary hypertension as a result of taking Sprycel. My heart is severely damaged to the point where it cannot pump enough oxygenated blood into my lungs. I know have a Hickman catheter in my chest and have to carry around a bag with a pump that continuously supplies Remodulin to my heart in an effort to control the pulmonary hypertension and hopefully remodel my heart. This appears to be a lifelong device that I will have to learn to live with. So be it.
That said, I have been off Sprycel since December. My bloodwork is now coming back "weakly positive" on the BCR/ABL. The onc wants to put me on max dose of Tasigna. Of course, since I could not tolerate Gleevec and obviously could not tolerate the Sprycel - I am highly resistant to his approach. In private, my nurse practitioner told me that not one oncologist at Cleveland Clinic will treat CML at low doses. I told her that I know of people in my CML support group who are on low doses. She asked me to get as much information as possible so she can present my case. If any of you would please email me your situation and why you are on lower doses of the CML drug you currently take, I can cut and paste the info into an email to send to my NP (you can leave out all details that would violate your privacy) - but please list your doctor's name, phone number and address, so she can contact him/her to further my cause. Also, if anyone has any information regarding Dr. Druker - especially phone number or email address - I would very much appreciate it so I can forward it to my NP. She doesn't have time to research these issues and she asked me to get as much information as I can and forward it to her via email. Any studies he is currently involved in - links to websites - the whole shmiel, I would be eternally grateful. Keep Fighting Warriors - I intend to!!! :) Kelly [email protected] -- [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
