The past two weeks have been all about multiple myeloma related research, FDA approvals and hope. Not so much about hope for a cure—we all want that!
No, I’m talking about baby steps. Hope that one or more of the new drugs previewed at the American Society of Hematology (ASH) meetings in Orlando, Florida will help extend our lives long enough for the next new drug to be developed and approved.
This is the bizarre and unfortunate, dysfunctional cycle of life those of us with multiple myeloma face.
The good news: We are alive—at least most of us. The bad news: We need to use any number of toxic and expensive concoctions to stay that way.
Experienced, long term survivors understand this. Newly diagnosed patients do not.
Looking back on my recent posts, I was struck by how technical they seem. A newly diagnosed patient doesn’t know anything about carfilzomib or pomalidamide. Their caregiver(s) don’t understand the difference between induction and maintenance therapy. All they know is someone they love has cancer.
I’m still hearing stories about doctors giving patients outdated and unfounded life expectancy numbers. Expressions like “Get your affairs in order.” or “The average patient at your stage lives 44 months.” or “You will need a bone marrow transplant right away.”are most often inaccurate, overly dramatic and leave patients and caregivers feeling rushed, desperate and despondent.
The first thing a newly diagnosed patient should do is STOP! Take a breath. Step back. Rarely does multiple myeloma require immediate treatment. Often, everyone panics unnecessarily—including the doctor. In most cases, a few days or weeks to research and plan won’t effect your long term prognosis.
Next, go http://www.mymultiplemyeloma.com/. This easy to navigate site will help fill you with hope and get you some easy to understand, basic information about this cancer of the plasma cells in your bone marrow.
Confused? Overwhelmed? Depressed? Or are you soaking all of this information up like a sponge? Regardless, the next step is to go to http://www.myeloma.org./ This takes you to the International Myeloma Foundation’s (IMF) site.
The IMF site features just about everything you would ever want or need to know about multiple myeloma and more. But honestly, it isn’t the easiest site for a new patient to navigate. There are tabs, links and mysterious portals everywhere.
Not to worry. The reason I sent you there in the first place wasn’t to do more computer homework. No, I want you to pick up the phone and call one of the IMF’s excellent counselors (the IMF calls them hotline coordinators). Here is a direct link to their contact information, complete with a bio and picture of who you will be talking to: Meet the IMF Hotline Coordinators.
That’s enough for today. Tomorrow I will give you some tips which will help you quickly raise your multiple myeloma IQ.
Until then, no worries, OK? Get some rest, feel good and keep smiling! Pat