It took me years to figure it out but conventional oncology’s definition of treatable is very different from a multiple myeloma patient’s definition of treatable. My oncologist prescribed chemotherapy and radiation that caused short, long-term and late stage side effects that I struggle with to this day.
I now understand that standard MM therapy is excellent at stabilizing the newly diagnosed patient’s MM. But painful experience taught me that the more chemo and radiation the patients has, the greater the risk of side effects.
Further, there are dozens of complementary and integrative therapies that research has shown can enhance chemotherapy and radiation and/or can kill MM. Foods, supplements and lifestyle therapies such as whole-body hyperthermia can kill MM as well as help us keep us MM survivors strong before, during and after therapy.
My multiple myeloma experience illustrates why conventional MM oncology is only a small piece of the multiple myeloma picture. Newly diagnosed MM patients and long-term MM survivors must use the best of both conventional evidence-based non-conventional MM therapies.
An x-ray of my neck revealed a large mass (large MM lesion) where my fifth cervical vertebra should have been. The doctor told me that I shouldn’t drive. Getting rear-ended might break my neck.
I went under the knife four days later and woke up eight hours after that. When I first woke from my surgery, Dr. Makley told me that I had multiple myeloma (MM). I was told that myeloma was an incurable but very treatable (?) blood cancer. Despite Dr. Makley’s pathology report stating a diagnosis of MM, a few days later I was told that I had a single plasmacytoma. My oncologist, Dr. Nathan Berger, told me that I had “pre- MM,” non-secretory myeloma, not frank multiple myeloma.
In January of 1995, 10 months after my diagnosis of a pre-myeloma, I felt pain and tingling extending from my lower back down my left leg. The pathology report was difficult to understand so I will transcribe exactly what was written.
“Evidence of equivocal staining for epsilon heavy chains, suggests the unlikely possibility of IgE type plasma cell dyscrasia. Serum IgE quantitation will be helpful in excluding this possibility if it is clinically warranted.”
My pre-myeloma had developed into frank multiple myeloma. Dr. Berger told me that I should begin induction chemotherapy of (V.A.D.-vincristine, adriamycin, dexamethasone) followed by high dose cytoxan and an autologous stem cell transplant, all in 1995.
I underwent radiation to my sacrum and iliac crest and then began induction chemotherapy from April-May of 1995. Shortly after my first cycle of V.A.D. I developed a deep-vein thrombosis in my left leg. I completed 6 courses of V.A.D. from April-August ’95.
That September I had two courses of high-dose chemo (cytoxan) and in December of 1995 I underwent an autologous stem cell transplant. I relapsed 10 months after my ASCT (October of 1996) and underwent more radiation to my sacrum.
I relapsed again about 10 months later. It was now the end of the summer of 1997. At my appointment with my oncologist, Dr. Ann Rassiga, my third oncologist in three years, I was told that they had tried radiation and multiple chemotherapy regimens. Sadly Dr. Rassiga told me that “there is nothing more that we can do for you.”
I was young (36) and in otherwise good health. I had a difficult time thinking that I was end-stage. Perhaps I was in denial…and a little angry. Okay, I was a lot angry.
During the summer of ’97 my wife Dawn did some research on the Internet and found a clinic in Houston, Texas called The Burzynski Research Institute (BRI). I knew NOTHING about alternative cancer therapy. I only knew that I had to do something about my cancer (that was beginning to really hurt). I didn’t want to go to Germany (Dr. Hans Neiper), the Bahamas (IPT), or Mexico.
In November of 1997 I traveled to the BRI where I began antineoplaston therapy (ANP), a non-FDA approved therapy.
Over the next 17 months my “incurable” cancer slowly retreated and I have been cancer-free since April of 1999. Monthly MRI scans document the progression from end-stage MM to complete remission.
My health insurance, Medical Mutual of Ohio, deemed the non-toxic chemotherapy that took me from end-stage cancer to cancer-free to be “not medically necessary” and denied payment for it.
I spent the next few years wondering if I would relapse. After all, I was told that all MMers eventually relapse and die. A lived through many short, long-term and late-stage side effects from my conventional therapies. I still fear a relapse of my myeloma or a treatment-related secondary cancer from all the chemo and radiation I underwent from ’95-’97.
I launched the Galen Foundation DBA PeopleBeatingCancer in 2004. I spend my time researching cancers, blogging about cancer issues and working with cancer patients, survivors and caregivers. It may sound odd but I find cancer interesting. Coaching cancer patients, survivors and caregivers has become my passion.
The long-term and late stage adverse events (side effects) caused by my aggressive conventional therapies are:
ANP from the Burzynski Research Institute put me into complete remission from my end-stage MM. However, MMers always relapse. Always. Further, my risk of a treatment-related secondary cancer is more than 25% annually. I have been in complete remission since 4/99 by living an evidence-based, non-toxic, anti-MM lifestyle through nutrition, supplementation, bone health, mind-body and lifestyle therapies.
I’m trying to make three important points:
Providing evidence-based, non-toxic, anti-MM therapies through the PeopleBeatingCancer MM Cancer Coaching Program is my purpose in life. I’ve learned that if you are diagnosed with cancer knowledge is power.