One in 5 newly diagnosed myeloma patients die in the first 60 days! One in 4 are gone within the first year. Ninety-seven percent of people have never heard of multiple myeloma.
Lack of awareness, wrong diagnoses, and poor first treatments MUST be what makes early survival so terrible. I remember when I went to the doctor for high blood pressure and fatigue. He decided to give me a blood test just because I had not had one in a year and found that I had kidney failure. His first thought was that I had worked outside in the heat and was dehydrated. I then went to the hospital and they said it was likely one of three possibilities; it was most likely dehydration and least likely to be cancer. Tests finally reported that it was myeloma. I was lucky that I was diagnosed just a week after I was checked by my doctor for fatigue. Prior to this I had noticed that if I bled, it would take forever to stop. I thought that was odd, but now know it was due to very low platelets, and my fatigue was caused by a very low red blood cell count.
Just a short time after my diagnosis, I had heard of a patient who had died from multiple myeloma and his family was suing the VA hospital because he was diagnosed and treated for psoriasis with no improvement. They continued to treat him for psoriasis for some time, and he was finally diagnosed with multiple myeloma but too late to save his life.
So if awareness and knowledge can SAVE LIFE, we need people to understand how important it is to know the symptoms of myeloma and the way standard blood test results can help to show that myeloma may be present. From the American Cancer Society web site I found a summary which may just help to educate the yet to be diagnosed. It outlines the symptoms, a few of which are anemia, frequent infections, nerve tingling and damage, bleeding that will not stop, bone breaks in the spine and ribs, confusion, and kidney damage. A standard blood test can be an indicator of possible trouble, even if you show no symptoms. Low red blood cell count, low platelets, high calcium, low white blood cell counts, excess protein in the blood, and more depending on the number of variables tested.
For years the IMF and MMRF and LLS organizations have worked to get the word out, and with all of their fine efforts, myeloma is still an unknown orphan among cancers.
Maybe we need a champion, someone like Katie Couric who has accomplished so much in the area of colorectal cancer screening. Since Katie took this as her cause after her husband was taken from her by colorectal cancer, colorectal screenings have increased to 64% for people over 50, and deaths have fallen 30% because of this awareness of the need for screening. That is 21,561 fewer deaths each and every year. There has been a remarkable drop in colorectal cancer due to awareness of the need for screening. Lacking a champion, it is up to the myeloma organizations and patient advocates to continue our efforts at MYELOMA AWARENESS.
One way for YOU to help with Myeloma awareness is by getting this message out to your Facebook, Twitter or other social media contacts. You may not know someone with myeloma but your contacts might, and you may just help to SAVE LIFE! Just Click the Twitter and Facebook icons at the end of this post.
Good luck and may God Bless your Cancer Journey.
about the author
Gary is a myeloma survivor and patient advocate. His work centers around helping patients live longer by helping them to find facilities who are beating the average survival statistics. You can find Gary's site at www.myelomasurvival.com and follow him on Twitter at @grpetersen1