Myeloma Cure Panel broadcast
We had a very informative Cure Panel discussion on myeloma on Blogtalkradio with Dr. Parameswaran Hari as myeloma expert on 25th September at 4:30 pm EST. The show was co-hosted by Gary Petersen and had over 40 live callers.
On the panel we had Pat Killingsworth, Matt Goldsman, Keith Virgin, and Lori Puente. Dr. Parameswaran Hari meticulously answered and discussed with the panelists on the topic of disease progression. The AHA moment for all who were listening was Dr. Hari’s target of 40% cure!
Dr. Hari answered questions from listeners too in the question answer session.
There is some excellent discussion and information on MGUS and Smoldering and the new trials on treating Smouldering before it develops further which is as per all things Myeloma, in heated debate. I learned a lot of new things in this presentation. My question on the high risk factors wasn’t quite duplicated. Bottom line is this, many of the clinical high risk factors used in the past, and still being used today, are not considered problematic for the larger researching facilities and certainly not Arkansas. So if you fall into this category after staging with a local oncologist, I strongly urge you to revisit your consultation list and include one of the bigger facilities for your treatment. They will have a better shot at getting you into a sustained response.
It is quite worrisome when I read people’s comments on the MM FB page where they announce their GP or some other type of doc has diagnosed them (or a loved one) with MM and they are (most likely still in a state of shock and haven’t fully integrated the outcomes yet) seemingly unwilling to even get a second opinion, much less consider finding a way to get to a medical facility that is focusing on MM.
And this disease is such a tailor’s nightmare, meaning that very few people really fit into one ‘suit’ of myeloma and every individual has a disease called Myeloma which presents in 1000’s of different ways with a variety of outcomes and length of duration.
My SIL is at SCCA, getting wonderful care, but after two failed SCTs and a mini-allo which seems to have held off the disease for awhile, still the added Revlimid is making him sicker rather than doing much healing. I am just not convinced that Revlimid is the answer. I wonder if I am alone in this. I cannot listen to the show because of a rotten internet connection here in S.A., but was that brought up?
Loved the shots of you in the journey across the country…
http://trialx.com/curetalk/2012/09/listen-here-myeloma-cure-panel-talk-show-broadcast-with-dr-parameswaran-hari-as-myeloma-expert/
Lori – how do I find the discussion so I can listen? Thank you for all you do….. 🙂