Multiple Myeloma – Our Pilgrimage to the Medical Mecca – The Mayo Clinic – Part I

Please note – this three part series was written at the request of my mother – who felt it was important information for other families struggling to get answers about Multiple Myeloma, and where (and how) to get to help.

As I said in the previous post – Multiple Myeloma – The Diagonsis, my Mum, after receiving a diagnosis of Multiple Myeloma – had decided not to start treatment because of concurrent issues regarding the increasing severity of her lower extremity weakness. This muscle weakness had been an ongoing issue, which she felt was induced by the use of statins, prescribed to her years ago. For years, she has mentioned this weakness to physicians, and shown them data points regarding her CPK test results (an enzyme which becomes elevated because certain types of muscles are either being damaged or injured) which she had meticulously plotted on a graph – and they all kind of waved it off, and dismissed my Mum’s concerns as the mutterings of a crazy scientist. And so, we waited and watched.

And things were going fairly well for my Mum. She visited the local Oncologist about every 3 months. Her labs relayed a story of the multiple myeloma just languishing – nothing was really getting worse. She had started taking CBD oil (15mg daily) and using a CBD oil based salve, which she would apply to sore spots, after doing some extensive research into alternative therapies to help with the Multiple Myeloma. She sensed it helped a little, especially with her digestive system, and possibly with some of the discomfort. But her scientific mind couldn’t exclude the possibilities of these changes being part of the placebo effect.

About 2 months ago, she casually began to mention the fact her left leg seemed to becoming weaker and weaker. She couldn’t lift it off the bed, she was having to use her cane more regularly. She was having trouble doing her normal activities, getting to the store, volunteering, and attending to her garden. My Mum is usually a very busy person, she is always helping others and she was finding all of this more and more exhausting to do. I could sense she was really becoming frustrated with this, when I spoke with her every morning. And as the muscles weakness increased and her daily activities became more difficult, we realized it was time for something else to be done.

She spoke with her Primary Care Physician – and he thought it might be prudent to obtain a second opinion, to see if there were treatment options for my Mum. He referred her to a Cancer center near her, in her state. While awaiting a call from this center, she asked me to look around and see if perhaps I could locate a Cancer center somewhere in the Midwest, that might have some clinical trials in the process of recruiting subjects. I started calling. I called the University of Chicago, the Indiana University and various other facilities in the region. All of the people I spoke to were very nice, but required my Mum to travel to their facility for an initial consultation and then return for testing and ultimately treatment. This logistically, was just not going to work. As I said, I live in California, my Mum lives in Indiana, and as my Mum would need help getting to these appointments, it was 1) financially prohibitive, and 2) getting the time off to attend these appointments would be difficult.

I kept calling and calling, trying to find a place that would make the initial consult, do the labs and studies required and initiate treatment. As far as the clinical trials – that was impossible. She didn’t qualify for any of them, because she hadn’t failed the standard trio of treatment (as she had never started the treatments) and because of her age. I was becoming frustrated right along with my Mum. There was nowhere to turn, no one was willing to help my Mum, and I really felt a deep sense of hopelessness and helplessness. I scoured the Internet, went into the Multiple Myeloma forums looking for answers. And this is when I discovered they were holding an International Symposium on Multiple Myeloma somewhere in Europe, and one of the main speakers was Dr. Brian G.M. Drurie, who was a top specialist in the field of Multiple Myeloma. He was based at Cedars-Sinai Medical Center in Los Angeles, and Chairman of the Board for the Internal Myeloma Foundation. He had an email address – and so I emailed him. I figured I had written the Queen of England, and received a really nice reply from her, so I could certaily email Dr. Drurie.

I continued searching for places to take my Mum, expanding my search into Texas – the Dallas area, which is near where my brother resides. I placed calls to all the facilities in the area that specialized in Multiple Myeloma, and waited for responses – that never came. I was really losing hope that I could find a place to take my Mum, and then I received a really in-depth, lengthy email form Judy Webb with the International Multiple Myeloma Foundation in Los Angeles (my email to Dr. Durie had been passed to her). I called her immediately, and spoke with her. She was such a nice lady, so empathetic, so informative and full of resources and places to turn. She gave me names of places where we might go – but she said if you really want to get some answers try MD Anderson Cancer Center in Houston, or the Mayo Clinic in Rochester, Minnesota. She said the Mayo clinic would not only evaluate the Multiple Myeloma, but also look into why my Mum was having so much difficulty with her legs, and muscle weakness. She said the Mayo clinic would do a complete exhaustive work-up, and within a 5 -7 business days we would have some answers. If they recommended treatment, this could be done through my Mum’s local Oncologist. I was so excited. Finally, I had an option for my Mum, which was logistically feasible. I asked Judy if she would mind speaking with my Mum, and she said of course – she would be more than happy to. They had a long discussion, and my Mum agreed that travelling to the Mayo Clinic seemed like the best solution.

And so that is what we did.

Please see the following post – Multiple Myeloma – Our Pilgrimage to the Medical Mecca – The Mayo Clinic (Part II) – Getting to and Navigating Through Mayo (which I am presently working on)

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