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A diagnosis of any cancer, especially a rare blood cancer such as multiple myeloma, is life-changing. While the prognosis for multiple myeloma is limited at best, I think my experience opens the door for more than the conventional standard-of-care for all MM patients.
I hadn’t even heard of a cancer called multiple myeloma when my oncologist gave me the bad news. I had been living with a pain in my neck for several months leading up to my multiple myeloma diagnosis.
Multiple myeloma symptoms, chemotherapy regimens, a bone marrow transplant — I knew nothing about these things. I had a lot to learn…understanding multiple myeloma means that you can live a new normal.
Average life expectancies are currently 5-7 years with 55% of newly diagnosed MM patients living for five years. However, newly diagnosed MM patients with early stage MM (stage 1) achieve a five-year survival rate of more than 77%.
Currently there is no cure for multiple myeloma. In my experience, combining the best of both conventional and non-conventional therapies can improve your prognosis for multiple myeloma and quality of life.
The likely prognosis for multiple myeloma patients will be remissions and relapses over a period of years. It is possible to experience a first remission of years followed by a series of shorter relapses and remissions.
Experience has taught me that it is essential to learn as much as you can about your multiple myeloma if your goal is to live the best possible quantity of life as well as quality of life. This is your new normal life with multiple myeloma.
Every decision you make in the coming years about you and your cancer will depend on understanding your multiple myeloma. As the saying goes, knowledge is power.
This post — Prognosis for Multiple Myeloma — is the entry to the hundreds of pages of studies and experiences cataloged on PeopleBeatingCancer.
I researched and created the Multiple Myeloma Cancer Coaching Program in order to provide MM patients with an evidence-based, step by step program to learn about their Multiple Myeloma.
I am a long-term Multiple Myeloma Survivor and MM Cancer Coach. I research and write about all things multiple myeloma. PeopleBeatingCancer is dedicated to providing the experience and research needed to manage your multiple myeloma.
I work with newly diagnosed MM patients, MM patients who have relapsed, online MM groups, and I administer a private MM group called Beating Myeloma.
Have you been living with bone or joint pain for a while now? Have you had a skin rash or nerve pain and not understood why? Or maybe you’ve been mis-diagnosed? Bone, joint, skin, and nerve pain are several of the more common multiple myeloma symptoms. That is to say, these are some of the health problems caused by monoclonal proteins before you are diagnosed with multiple myeloma.
Multiple myeloma is notoriously difficult to diagnose. Therefore, many tests examining your blood, urine, and even your bone marrow are used to determine if you have multiple myeloma. If you do, your stage at diagnosis is determined by your diagnostic criteria.
Multiple myeloma diagnostic criteria go by the acronym CRAB:
In addition, you will probably also undergo a serum protein electrophoresis test (SPEP), an Immunofixation test, a Freelight Chain test, a bone marrow biopsy, a Fluorescence in situ hybridization (FISH) test, and possibly others. As I say, multiple myeloma is difficult to diagnose. Thorough diagnostic testing is your most important first step to managing your MM for the rest of your life.
Staging your diagnosis of multiple myeloma is the second important step for managing your cancer. Multiple myeloma has only three (3) stages: I, II, and III. According to research, 95% of all newly diagnosed patients are stage 2 or 3.
When I use the phrase “conventional therapies,” I am talking about those treatments that have been researched and approved by the Food and Drug Administration (FDA). They are surgery, chemotherapy, and radiation.
Your Board-certified Oncologist will prescribe only FDA-approved therapies to treat your multiple myeloma. Whether you are newly diagnosed or have relapsed, you will undergo surgery, chemotherapy, and/or radiation to treat your multiple myeloma.
FDA approved treatments (the standard-of-care for multiple myeloma):
The reason why you are undergoing therapy for your newly diagnosed multiple myeloma is to stabilize your disease. How you respond to treatment is referred to as “response criteria” or your “response to treatment.”
All newly diagnosed multiple myeloma patients want to get rid of all of their cancer as well as all of the monoclonal proteins (multiple myeloma cells) in their bone marrow. Unfortunately, no one responds 100% to treatment. Even the most complete response possible — MRD (-) — means that there are 4 monoclonal proteins for every one million normal cells.
Most of us know about common short-term side effects of cancer therapies. Think nausea, fatigue, hair loss. Hopefully all are temporary health problems. Though I don’t think oncology does a good job of educating the multiple myeloma patient about long-term side effects of treatment, I think treatment-related side effects must be included in the discussion about your multiple myeloma treatment plan.
All multiple myeloma therapies that I refer to as non-conventional therapies are those treatments that have not been researched and approved by the Food and Drug Administration. This isn’t necessarily a bad thing. The FDA doesn’t approve nutritional supplementation for example.
While there are thousands of studies touting the health benefits of exercise for the multiple myeloma patient, for example, you will never see the FDA approve exercise for treatment.
Since I achieved complete remission from my multiple myeloma in April of 1999, I have researched and written about evidence-based non-conventional therapies such as:
These are just some of those therapies that I define as evidence-based but non-conventional.
You can learn more about my journey here. If you’d like to get a more personalized approach to managing your cancer, I encourage you to sign up for my multiple myeloma coaching program. If you have any other questions, would like to contribute, or otherwise get involved, you can reach out to us here.
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