One-day Patient and Family Forum in Los Angeles, California, February 27, 2016
A free one-day patient and family forum will be held in Los Angeles, CA, on Saturday, February 27, 2016. The forum will be hosted by the MDS Foundation. It is one of 11 patient and family forums scheduled for 2016.
Attendees will hear from leading MDS experts. Breakfast and lunch are included. You're invited to bring mobile devices (tablets, "phablets", or smart phones) with you.
Topics to be covered:
Saturday, February 27, 2016, from 9:30am to 2:00pmWhere:
Beverly Hills MarriottRegistration:
Use the online registration form or contact Deborah Murray at 1-800-637-0839 x203 or by email.For more information:
Contact Deborah Murray.
If you plan to attend this patient and family forum, post in this thread to let other attendees know to look for you!
After the patient and family forum, let us know what you thought of the event.
We found the MDS Foundation's Patient and Family Forum to be very useful.
We learned a lot from Dr. Schiller, and just as much from Erin Demakos, RN, Associate Director of the Myelodysplastic Syndrome program at Mount Sinai School of Medicine in New York. She works with Dr. Louis Silverman.
Some facts we learned
Worrisome treatment statistics
We heard something that's been emphasized before, but hasn't been taken to heart by enough patients and their hematologists:
When hypomethylating agents Vidaza (azacitidine) and Dacogen (decitabine) are used, they should be given for 6 months before judging whether they produce a response. As this video (also with Erin Demakos) explains, that's 6 monthly cycles for Vidaza and 4 to 6 cycles over 6 months for Dacogen. You can expect counts to drop at the start of each cycle, and then rise back up before the next cycle, but you won't get the benefits, or give yourself a full chance for a response, unless you take them for 6 months.
The median time to response is 3 or 4 months, which means that half of patients who respond need longer to get there. The dip and rise in counts that you typically see is a sign that the drug is working, so patients should stay the course.
Shockingly, one third of patients are given only one treatment cycle, about half get 3 cycles or less, and only one third are treated for the recommended minimum of 6 months. Some patients have to stop taking these drugs because of disease progression, but many other patients are being taken off too soon, to their detriment. That doesn't give them a proper chance to be in the 50% of MDS patients who respond to hypomethylating agents.
Of the patients who eventually respond to Vidaza, here is how soon it happens in number of cycles. It shows that almost one third have not yet responded after 4 cycles, but will as long as treatment is continued.
Cycles Percentage of patients who respond ------ ---------------------------------- 2 21% 3-4 64% 5-6 93% over 6 100%
Weeks Percentage of patients who respond ------ ---------------------------------- 5 50% 10 81% 13 92% 17 95% 22 97% over 22 100%
Tips from Patients and Caregivers
There was a session in which patients and their caregivers shared tips with each other. Here are some we heard:
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