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. )
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