Kathy Giusti, fellow long term multiple myeloma survivor and founder of the Multiple Myeloma Research Foundation wrote the post below about taking control of one’s cancer care. Full disclosure- Kathy and I approach MM survival very differently. Kathy is all about myeloma research and developing FDA approved conventional therapies. On the other hand, I am all about evidence-based, non-conventional therapies.
Yes, MMers do need to undergo conventional therapies. But my experience is that patients need toxic therapy much less than their oncologists would tell them to.
Kathy is smart and experienced. Not just in the world of multiple myeloma but in the entire cancer world. Living with an “incurable cancer” like multiple myeloma and directing a cancer focused nonprofit gives you the kind of experience that others simply don’t get.
Kathy and I were diagnosed with multiple myeloma about the same time. We have both lived well beyond the average five year survival averages. Kathy is the poster child for conventional FDA approved therapies and I am the poster child for evidence-based, NON-conventional therapies.
Years of working with multiple myeloma patients and survivors has taught me the importance of learning about conventional therapy for multiple myeloma. At the same time, I failed my own standard-of-care MM therapies and now life an evidence-based, non-toxic, non-conventional, anti-MM lifestyle through nutrition, supplementation, bone health, lifestyle and mind-body therapies.
All to say that Kathy and I agree completely on the five steps outllined below.
I am both a MM survivor and MM cancer coach. Look to the right of the page to register to watch a FREE webinar about my Multiple Myeloma Cancer Coaching Program.
“Step 1. Know your disease inside and out. It is critical to remember early on that you have not just been diagnosed with cancer, you have been diagnosed with a very particular type of cancer. Experience with your specific condition varies greatly from doctor to doctor, medical center to medical center…
Step 2. Integrate your team. Over the course of treatment, you will interact with a wide array of medical professionals — your general practitioner, an oncologist, a radiologist, a surgeon, etc. Each is a specialist, looking at your case through the lens of their focused role. You and your caregivers have to make them work together every step of the way…
Step 3. Bank your samples. Most people know that a tissue sample taken from a lump or tumor, biopsied and analyzed in a lab, is the first step in obtaining a reliable cancer diagnosis. But less known is that this first view of your disease, before it has undergone any alteration in response to treatment, may hold valuable clues that will be important to doctors later. Whenever you undergo a biopsy, remember to ask your doctor to bank your tissue so you can have the benefit of new information and technology later down the road…
Step. 4 Know your sequence.In some diseases (like lung, breast or colorectal cancer) it is routine to undergo genetic testing, because we know that certain therapies work better than others, depending on the genetic profile of a person’s cancer. Although it is not routine everywhere, many cancer centers have the technology to sequence some or all of a patient’s cancer genome. Be sure to ask your care team what is right in your case, and advocate to learn as much as possible about your diagnosis and what it means for your treatment options.
Step 5. Look beyond your treatment center.Over the time of your treatment, you and your care team may determine that you should change course and explore alternative options, including perhaps enrolling in a clinical trial of an experimental new medicine at another site. The central website clinicaltrials.gov is a helpful site listing all ongoing trials, organized by condition…”