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Old Thu Feb 4, 2016, 02:46 PM
Marrowforums Marrowforums is offline
Join Date: Jul 2006
Posts: 908
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:
  • Therapies and Patient Treatment Options
  • Patient Support Group Open Discussion
  • Quick Tips for Patients and Caregivers
  • The MDS Foundation's Building Blocks of Hope
  • The MY MDS Manager mobile app (bring a mobile device if you have one)
Presenters will include Dr. Gary Schiller of the UCLA School of Medicine.

Saturday, February 27, 2016, from 9:30am to 2:00pm
Beverly Hills Marriott
1150 South Beverly Drive, Los Angeles, CA 90035 (Google map)
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.
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Old Sat Feb 27, 2016, 11:32 AM
Neil Cuadra Neil Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,514
My wife and I will be at today's family forum. We'll watch for any other Marrowforums members.
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Old Sat Feb 27, 2016, 10:05 PM
Neil Cuadra Neil Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,514
Our report

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
  • Dr. Schiller recommends bone marrow biopsies for patients only when there is a "clinical demand," which means that something has changed. He said that only patients in clinical trials require monthly bone marrow biopsies.

  • FDA approval of potential drugs for MDS depends on survival statistics, which isn't the whole picture, since drugs may produce practical benefits such as blood count recovery or transfusion independence.

  • 80% of patients with therapy-related MDS (MDS secondary to prior cancer treatment) are found to have chromosomal abnormalities. For patients with primary MDS, it's only 40% to 60%.

  • The leaders in haploidentical transplantation (transplants from a half-matched donor like a parent or child) are (1) the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins University and (2) treatment centers in Latin America.

  • For patients with MDS 5q- syndrome, lenalidomide (Revlimid) works better in women than men. (I wonder why?) Overall, 70% of these patients respond, while the figure is only 25% for MDS without 5q-.

  • Dr. Schiller said that it's safe to try doses of vitamin B6 with newly diagnosed low-risk MDS patients. That's because vitamin B6 is water soluble, meaning that any excess amount is excreted. He's less willing to try vitamin A or vitamin D therapy since they are fat soluble, which means that if you get too much it will stay in your body tissues.

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%
Here's a similar chart for Revlimid, but based on weeks of treatment. It too shows that you may need 6 months to respond.
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:
  • When friends offer to help you, give them specific tasks, because they won't otherwise know how to help you, and may not speak up if you don't ask.

  • If you need rides to or from appointments, and don't have friends or family members to help, ask your treatment center (specifically a social worker if they have one) for local organizations that provide rides, or check with major medical societies like the Leukemia & Lymphoma Society or the American Cancer Society.

  • If your insurance has denied coverage for a drug you take or a drug your doctor says you need, get a "pre-authorization letter" from the doctor (a nurse practitioner may also be able to do this) and appeal the insurance company decision. If they don't decide in your favor, escalate or appeal your case. They often reverse decisions when you do.

  • Ask your utility companies (electric, gas) about discounts. Some give them for immunocompromised customers.

  • If considering the coming months of illness or treatment are too hard to face, take it one week at a time, one day at a time, or just get yourself through the next hours.

  • A tip from Ms. Demakos: If you're looking for a natural substance with medical benefits, read up on manuka honey, which she often recommends. But ask (and tell) your doctor about anything you take for medicinal purposes.
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