Hi Kelly, I am on 100 mgs of Sprycel and my onc doesn't want to lower it. I took it upon myself to lower it to 50 mgs daily for a few days and then jump back up to 100 after reading your post. This is truly scary! I will know when I get my blood work done if t his has helped or hurt. Hang in there girl. Tasigna is a powerful drug and I had some problems on it. My blood counts dropped really low and I had to have transfusions on it, however a lot of the CML'rs do well on it. My prayer sare with you. Jeanie<3 In a message dated 3/21/2011 2:38:15 P.M. Pacific Daylight Time, [email protected] writes:
Hi Kelly, Always remember that there is hope just around the corner, and never give up fighting. Here is Dr. Brian Drukers email address and telephone number. I do know that he does respond to his emails so maybe that would be the best way of contacting him. [email protected]_ (mailto:[email protected]) 503-494-5596 GOD bless you. 18's In the Hebrew language the number 18 stands for life, and is pronounced as CHI which is spoken like clearing your throat. Marty On Mon, Mar 21, 2011 at 1:31 PM, kellyelise <[email protected]_ (mailto:[email protected]) > wrote: 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]_ (mailto:[email protected]) -- [CMLHope] A support group of _http://cmlhope.com_ (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]_ (mailto:[email protected]) To unsubscribe from this group, send email to [email protected]_ (mailto:[email protected]) For more options, visit this group at _http://groups.google.com/group/CMLHope_ (http://groups.google.com/group/CMLHope) -- [CMLHope] A support group of _http://cmlhope.com_ (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_ (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
