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
