We went to the Conference primarily to meet other patients and also to hear first-hand the various treatment options from different doctors, as well as what is likely to be coming our way in the way of new treatments.
(I’ve been very happy with Dr. Verstovsek; but I do like to hear from the other docs as well.)
We met many patients, both recently diagnosed as well as veterans. The newly diagnosed were very excited to meet someone, ‘just like them’ and see that there are many treatment options and cause for optimism. Some will no doubt be coming to the MPNForum.
Likewise, we learned from those who have lived with the disease for many years and experienced a number of the complications that can occur with MF.
Most exciting in terms of treatments were the clinical trials mentioned by Dr. Levine involving AY922 and PUH71, which show promise of reversing fibrosis. But, also quite interesting for many patients (based on discussions with other attendees) are the trials involving Jakafi and other drugs in combination. I’m fairly optimistic there will be continuing developments in the medication options that will hopefully buy us some more time.
All in all it was very good. The venue was state of the art with four large screens across the front wall and two smaller screens on each of the side walls; so no problem for anyone to see the presentations.
Dr. Levine didn’t make it physically to the conference due to weather; but presented over the phone, with Dr. Camoriano at the PowerPoint controls. Nevertheless, his presentation was exciting because of the JAK2 deletion trials that have recently started and hold promise of fibrosis reversal.
On the MPN specific presentations: Overall, the suite of presentations by some of the most renowned doctors in their field is a good resource for patients to learn what we’re dealing with, the various treatment options/ risk factors. (The slides from those presentations are here.)
Dr. Susan LeClair did a nice job explaining the importance of good patient/doctor communications, as well as consistency when it comes to blood draws, to ensure apples-to-apples comparisons. She also provided examples of what she would track on her spreadsheet.
Photo credit: Charles Nielsen except photo of three doctors, Marina Peed.
(Marina Peed shared her notes from the Conference with detailed commentary. You can look over her shoulder right here. )
© Charles Nielsen and MPNforum.com, 2013. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Charles Nielsen and MPNforum.com with appropriate and specific direction to the original content.
Comments on: "The Joyce Niblack/Mayo Conference" (2)
Thank you for this information, very interesting.
Good notes, Charles. It was great to meet you. The three things that amazed me the most about the conference:
1.That these doctors were willing to send the whole weekend with us, taking questions from patients constantly. Really, constantly.
2. The walking miracles in the room (and you are one). There were pre-Jakafi photos of patients suffering from horrible spleen enlargement in one of the shows, and the post-Jakafi photos of smiling, healthy patients were amazing. And then to meet the people who had a new lease on life – wow.
3. The disagreement in treatment protocol for patients – I heard from different doctors that a person in my situation (ET) should be:
a. Stopping HU and taking interferon instead;
b. Increasing my HU dosage to get my platelets in normal range;
c. Stop taking any drugs other than aspirin.
Sigh. Lots of thinking to do, but it was great to get this information first hand.