First, everyone have a wonderful Thanksgiving. It is great to be thankful on Thanksgiving. Breast Cancer is thankful for Susan Komen, and Katie Couric has been the champion for colon cancer. The result being a significant reduction in deaths and early detection, which just may have been the biggest and most outstanding accomplishment. However, Multiple Myeloma has never had that person who could and would champion our cause. Now I am happy and thankful to say we have TOM BROKAW, our champion, our Hercules. He could have just hid his cancer like many do, or just stayed quiet and act the victim, but no, he has become a myeloma activist. It is not to say we don't have some very excellent people trying, doctors, IMF, MMRF, LLS, and the great group of patient advocates like, Mike Katz, Pat Killingworth, Jenny Ahlstrom, Nick van Dyk, and many, many more, but we just have not had the person who could catch the attention of the masses to really have an impact on awareness. It is not because we have not tried, but we just have not been able to get the visibility which might create the momentum to achieve awareness. The proof is in the results as published by the UK's National Health Service, where only 3% of the population have ever heard of myeloma. This translates in 1 in 5 newly diagnosed patients dying within the first 2 months of diagnosis, due to delayed diagnosis and advanced disease. That is 4400 dead each year, or a little over half the number killed from auto accidents for this age group of people.
In recent days, Tom Brokow has taken on a leadership role in helping to bring myeloma into the mainstream of thinking. He was just part of the MMRF annual Comedy fund raiser, and just recently provided an interview of his journey conducted by Dana Farber Cancer Institute. His observations were excellent and provided great incite into the disease, the impacts of the disease (in his case bone damage), and the risks inherent in treatment of the disease (infection and hospital stays). It also outlines the fact that Tom must have had the disease for some time prior to diagnosis, in that he had bone damage to the extent his vertebra collapsed. You can listen to Tom's interview if you CLICK HERE.
And it may not just be awareness that is required, because delayed diagnosis also happens to doctors who have been educated on Multiple Myeloma and its symptoms. ONJ or jaw bone disintegration is well know by orthodontists as an issue with Zometa and Myeloma, and they have been trained to work on it. But this does not mean they can not be victims of delayed diagnosis. A doctor sent me the following summary of his delayed diagnosis.
The Doctor provided the following about his two year journey from first symptoms to diagnosis, and is thankful to be alive.
This is a story about why you should listen to your wife or I am the luckiest guy in the world and I have several Guardian Angels.We all make a million choices every day from the smallest to the largest all may or may not be important. Think of the people that didn’t go to work for one reason or another on 9/11. I almost made a choice that cost me my life. In the fall of 2001 I was getting ready for bow season and went out to practice shooting. When I pulled the bow back I heard and felt something pop in my chest. That was the last arrow I ever shot!. I was being treated for asthma by my allergist and I had constant bronchitis. One night I reached for something and my arm went into spasm. My wife wanted me to find another doctor but I refused because he was a friend and most of the diagnosis of cartilage inflammation was done over the phone. It also made sense to me. I had pain in my back that was so bad I couldn't get out of bed unless I turned over on my stomach and just slid out of bed. I was given Celebrex and right away I felt better. In April of 2002 we went to Galena Il. to celebrate our 37Th. anniversary, and I couldn’t climb the stairs of the B&B. This time I got Vioxx. Still I refused to see anyone else. That summer we switched to Bextra for the pain and Nancy and I had a major argument over my medical care. About then I started to feel better and we dropped the issue. As winter came on I didn’t have enough strength to start the snowblower but my daughter could. In January I went on an 800 mile snowmobile trip in the U.P. and did OK. Then in March I went with a friend to Montana to snowmobile. I thought we were going to ride the Yellowstone trails. I was a good trail rider but had only a week of mountain riding experience. This is where the first Guardian Angel comes in. We started our first day on a cold and snowy morning. The snow was so bad you couldn’t see. So we dropped down into a valley where visibility was better. We stopped for lunch and my hands were cold even with gloves on. This was a first as my hands always stay warm riding. It was time to ride up the mountain and head back to town. The snow in the valley was very deep since it had been snowing 12 inches a night for over a week. If you wanted to stop without getting stuck you had to ride in a circle and stop on your tracks. I tried three times to get up the mountain and got buried each time. This took lots of effort and I was getting very tired. Our guide said to ride closer to the trees ,the snow would be firmer there. Off I went at 40 MPH, and wham a tree well had broken, the sled flipped over and I hit like a ton of bricks. My first thought was I had fractured my pelvis. Eventually I got out of the valley by walking in snow up to my chest and crawling up the mountain. This took one sentence to write and about two hours to do. I had a large bruise on my side but I was lucky to be alive. When I got home I called for an appointment to see what the damage was. I had a chest x-ray in November and passed an insurance physical. That x-ray must have shown no broken ribs or disease. That night I got the call we all dread , I had nine broken ribs and it looked like I had Multiple Myeloma. Unlike most people this was not the first time I had heard of MM. I had taken the Special Pathology of Bone as part of my orthodontic training. The orthodontist moves teeth but his medium is bone. I ran to get my 25 year old notes ( yep I’m a pack rat) and about lost it when I read what I had written all those years ago. I had 3-6 months to live. The notes were old so I got to the internet as fast as I could. Not much better, it said 2-4 years. As it turned out both were way off. Without the snowmobile accident I would have gone until I had kidney damage, bone fractures, or ended up in the emergency room with septic shock. That was miracle number one. I blindly started treatment the next week with surgery to place a port and to start a fanny pack with VAD chemo. I soon had pneumonia but overcame that, I started Zometa and promptly got osteonecrosis on both sides of my mandible. The Dex drove my blood sugar up and I soon became a Type Two Diabetic. I had had three rounds of chemo when I found out my insurance would not pay for my stem cell transplant where the local oncologist wanted me to go. They were not Myeloma specialist but general oncologist and were out of network. Things were looking pretty grim and any hope of living more than a few years faded. Here comes miracles 2&3. My next door neighbor was flying and the guy next to him was a doctor that worked for my insurance company. The neighbor told him about me. He said the insurance company would pay if I went to Indiana University Medical Center. IU was in network! I had hit the jackpot! The doctor there only treated Myeloma. I remember like it was yesterday when I first met Dr Abonour and his nurse Gina. Almost 12 years later I am still doing great. I had been very lucky, it had been almost two years since my first symptoms, and I had a low risk Myeloma or I would have never made it to diagnosis. I ended up with a Myeloma Specialist by accident. The combination of Celebrex, Vioxx, and Bextra would have put me into kidney failure if I had been a secretor. I was only the third Myeloma patient my internist had seen in forty years of practice. The moral to this story is if you have long term back or rib pain, fractures, constant bronchitis, fatigue,nausea or bruising please follow what your wife or husband says and see a doctor that knows about myeloma. If you are unlucky and there is any suspicion of Myeloma see a Myeloma Specialist. Myeloma Specialist are in all the large cancer centers like MD Anderson, Dana Farber, Mayo’s. U of Arkansas, and IU. Your family will thank you.
If a doctor takes two years to find out he has myeloma, how can we expect any better results when a typical patient shows symptoms. Nor can we expect the General Practitioner to do what most common diagnostic tests won't show in the early stages. Awareness is so important, but how should we focus this awareness to obtain earlier diagnosis? I will continue to pursue this question in the next blog post which will be about, "How Do We Obtain Early Diagnosis?"
Good luck and may God Bless your Cancer Journey. For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1
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