Hi Kelly, if you can look in the Internet at "Emory University Cancer center " in Atlanta and look fro Dr. Jean Khoury MD. Chief Division Hematology. He saved me last year by drastically cutting down my medication. He only handles CML Patients. To me he is the best and caring Dr. I am now in Florida and go to Moffitt. My onc. Is Dr. Balducci, very good but to me the best is Dr. Khoury because he is only a hematologist and teaches at the university. Worth a second opinion. I wish you the best Nadia From: [email protected] [mailto:[email protected]] On Behalf Of Zavie Miller Sent: Saturday, March 26, 2011 11:03 PM To: [email protected]; [email protected] Subject: Re: [CMLHope] HELP! On Mon, Mar 21, 2011 at 1:31 PM, kellyelise <[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] -- [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 Hi Kelly, Here are Dr. Druker's coordinates. Dr. Brian Druker [email protected] 503-494-5596 My best advice to you is to see him on consultation ASAP. You situation requires the help of a CML pro. There are others who can help. Zavie Dr. Moishe Talpaz [email protected] 734-764-8195 Dr. Charles Sawyers [email protected] 646-888-2138 -- Zavie Miller (age 72) 67 Shoreham Avenue Ottawa, Canada, K2G 3X3 dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club 2.8 log reduction Sep/05 3.0 log reduction Jan/06 2.9 log reduction Feb/07 3.6 log reduction Apr/08 3.6 log reduction Sep/08 3.7 log reduction Jan/09 3.8 log reduction May/09 3.8 log reduction Aug/09 e-mail: [email protected] Tel: 613-726-1117 Fax: 613-482-4801 Cell: 613-282-0204 Yahoo ID: zaviem -- [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
