Tuesday, June 9, 2015

Great Day at the IMF Regional Community Workshop in Charlotte, NC

Saturday, June 6, 2015 was a great day in Charlotte, NC for the International Myeloma Foundation's Regional Community Workshop, titled "Living Successfully with Multiple Myeloma". The featured speakers were ones we had never heard before, and we were very impressed:  Dr. Saad Usmani (Dr. Barlogie was his mentor), Director of Plasma Cell Disorders and Clinical Research in Hematologic Malignancies at the Levine Cancer Center/Carolinas Healthcare System, in Charlotte NC, and Dr. Craig Cole, Assistant Professor of Hematology and Oncology at University of Michigan, Ann Arbor. Charise Gleason, MSN, NP-BC from Emory University Winship Cancer Center, Atlanta, GA also spoke to us on Supportive Care. These doctors are brilliant, and full of hope and energy in regard to the battle against Multiple Myeloma and the exciting advances in science and research! Their work is groundbreaking, and we were privileged to sit under their teaching for the day. The Westin also fed us very well, which never hurts when you are sitting for so long trying to understand very difficult terminology, some of which is familiar and much of which is not.

Unfortunately there were no handouts, so we were writing furiously as they spoke, trying to capture screen shots of charts, graphs and other key bits of information. (I still understand very little of the science associated with MM cells and treatment, so I apologize for keeping it simple, and not sharing more. There are plenty of sites like IMF, MMRF, LLS, Myeloma Beacon, and others, that have comprehensive information for you!) With so much outdated information circulating on the internet, it was encouraging to hear about accurate, up-to-date findings, with promising data from clinical trials, especially Antibody Targeting of Multiple Myeloma (Antibody based therapy) in relapsed or refractory myeloma. Myeloma cells have surface proteins, antibodies attach to surface proteins, multiple natural processes attack the MM cells identified by the antibody! Clinical trials of the following immunotherapy combinations are showing wonderful response rates, fewer side effects (no neuropathy), and increased time until relapse, so we are excited about these trials and combinations and look forward to FDA approval:

Daratumumab + Rev/dex
Elotuzumab + Rev/dex
SAR + Rev/dex

Here was lunch. I told you they fed us well :-)

Below are a few excerpts from my notes that were important to us (I apologize in advance for any inaccuracies):

Dr. Cole stated: "Multiple Myeloma represents 1% of all cancers, 10% of blood cancers, and it is not inherited. The cause remains unknown, though data showing exposure to ionizing radiation, diesel/engine fuel, and pesticides is convincing. The incidence statistics show 3 per 100,000 are Asian, 5 per 100,000 are Caucasian, and 12 per 100,000 are African American.

An essential feature of MM cancer progression is the variability within cancer cells called 'intra-clonal heterogeneity' (ICH). There are 3-6 sub-populations of cells that have different characteristics and aggressiveness. The most aggressive take over...survival of the fittest. 82% of patients have multiple gene definitions; different biological characteristics and treatment reactions. Relapsed MM is so hard to treat because you are dealing with so many different sub-clones! BUT, people ARE getting better, and clinical trials are becoming the standard of care...then, CURE! Great changes are coming quickly with the goal of gaining maximum effectiveness from treatment, with little side effects. Question your doctor, demand more, and take an active role in your treatment decisions. "

Dr. Usmani stated:  "In regard to Myeloma options at diagnosis, MM is not one disease, so one size does not fit all. Individualized therapy by a myeloma expert is critical. Don't ever be afraid to ask for a second opinion. Patients and doctors are a partnership, and must be able to work together as a team. Good and standard risk patients make up 80%, benefiting from novel agents and high dose melphalan/stem cell rescue. 20% are high risk. My goal is to change MM to a chronic illness for the majority, and probably curative for a subset. 85,000 are living with MM in 2015. Your prognosis factors include: 1) tumor burden, 2) tumor biology and 3) patient related factors. Deeper responses to treatment improve overall disease free time. "

Maintenance Strategies (Dr. Usmani) - Revlimid (10mg) and Velcade (sub-subcutaneously) are the two drugs he primarily uses. Revlimid maintenance after ASCT does produce improved overall survival. You get better mileage from Revlimid if you are on maintenance, and don't just use it at relapse. However, it is unclear whether ALL will benefit from maintenance...doctors must tailor the treatment choices. He also mentioned: 1) Ixazomib and Oprozomib 2) Pomalidomide, and 3) Monoclonal antibodies (Elotuzumab, Daratumumab and SAR 65084).

General practitioners need to be taught two screening mechanisms for MM detection in patients over 50: SPEP (serum protein electrophoresis) and FLCS (free light chain survey). Earlier detection is critical. MRIs and PET/CT scans are a much better picture of the bones than skeletal surveys as, according to him, they don't show lesions until 70% progressed (this was shocking news!).

So there you go...our day in a nutshell! It has been forever since I blogged, but wanted you all to know that EZ is well, and continues to be in CR (5th birthday coming up August 25, 2015!). Blessings to all of you! Sure would love to hear from our blog friends. This is us at our son's wedding reception December 20th...dancing the night away!


  1. I always learn something new about multiple myeloma when I read your blog,and I thank you, Linda. Praise God for the doctors who conduct the research to find a cure for this terrible cancer! I thank the Lord every day that Ernie is still in remission.

  2. Hi Linda. I'm happy that EZ is nearing his 5th anniversary in remission on Rev maintenance. It gives me hope, as I am approaching 3 years with Rev maintenance. It sounds like you had a great time and learned a lot at the seminar in Charlotte. The progress in MM research is really encouraging. Thanks for commenting on my blog!

    1. The research is so encouraging Bill and it gives us great hope for the future treatment of MM. Glad you too have done so well on Rev maintenance and pray that continues for you. Excited to read all about your upcoming trip to Peru!!!

  3. Thanks for the update! really informative. Seems like I'm on the right track. I understand that we may be getting revlimid approved in SA, within 2 months. This will hopefully make my life easier. I saw my Dr. recently, my results are good, basically in remission, although MRD of 1% out of 1 Million Cells, are plasma cells, and 1% of that, are residual disease. On another cycle of Valcade ;0

    1. Getting Revlimid approved in SA will be a huge step forward Charl! So thankful Velcade is working well for you and that you remain basically in remission!

  4. Wow Linda! Thank you for posting such informative conference notes! Even tho I read about MM often, and follow so many blogs and research sites, I learn something and process something new/different about this awful cancer every time. And your notes here are so on point here. I especially appreciate your comments about Revlimid and Velcade (which my Drs have been after me to add)... As always, wonderful pictures Linda! You are a natural Photo-Journalist! Thank you for a great post! and HI to EZ too :) xoxo

    1. Passed your hello on to EZ and glad you found my notes helpful. Wish they had handouts, but hopefully I got my information right. Love going to these seminars as I always meet new survivors and learn something new!

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