Jani and I arrived early at the Mayo Clinic Scottsdale Arizona for my 1:40 PM appointment with Rafael Fonseca, MD, Chair, Department of Medicine, Consultant , Hematology/Oncology.
We walked around a bit and checked in on the 3rd floor. We didn't have to wait long before they took us back for vital signs, weight and height. Then, they put us in an exam room like we have never seen before - carpet and a sofa!
Rafael Fonseca came in moments later and greeted us warmly. He spent just over an hour with us and was very responsive to our questions. He had reviewed my chart from the University of Colorado Hospital and was familiar with me "on paper".
He said he was in agreement with all of the prior treatments I've had, except maybe the 2 cycles of vorinostat (Zolinza). In short, he felt that my treatments since diagnosis had been right out of the 2012 multiple myeloma care guide (if there were such a thing).
I will always have the 4:14 and 1q21 cytogenetics and it is just a matter of trying to control the quantity in my bone marrow.
My current treatment with carfilzomib (Kyprolis) with Revlimid and Dex is appropriate for now. He thinks I should increase the carfilzomib dosage in the 2nd Cycle to 27 metered square from 20 as planned on 27 Nov 2012 at St. Luke's Hospital MSTI in Twin Falls, Idaho.
He would like to repeat a bone marrow biopsy after 2 cycles to see if it is working. He had them draw an SPEP on me today, but my blood isn't as reflective as my bone marrow which I already knew. They use conscious sedation and OnControl driver for bone marrow biopsies here (wish it wasn't 2 flights and 12 hours away)!
He is NOT concerned with my creatinine and GRF (kidney function blood tests) and does not think I have a problem in that arena. I can take Lasix as needed.
He sees no reason not to get an implanted intravenous port even with my prior atrial thrombus history.
He also thinks I should get my partially done root canal fixed as soon as possible even if my platelets are low, so I can get back on Aredia.
Another chemotherapy agent that might work if the carfilzomib is not working would be
cytoxan in pill form once a week with the intravenous carfilzomib.
It would be important to support me with blood and platelet transfusions as necessary and to not worry about that.
Clinical trials are not really for me since I would have to relocate and I am not willing to do that.
Pomalidomide may be out in February 2013 and Dr. Foncesa has had good success with it in clinical trials here at the Mayo Clinic Scottsdale.
Also melphalan in pill form could be considered.
He does not think that an allo stem cell transplant (one from a matched donor) would be helpful and would be too dangerous for me.
Overall, it was an excellent and informative meeting with Dr. Foncesa who said he was willing to follow me, but I didn't need to come back to the Mayo Clinic Scottsdale for the tests and treatments unless I wanted to - I'd always be welcome to come back.