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Recently Diagnosed or Relapsed? Stop Looking For a Miracle Cure, and Use Evidence-Based Therapies To Enhance Your Treatment and Prolong Your Remission

Multiple Myeloma an incurable disease, but I have spent the last 25 years in remission using a blend of conventional oncology and evidence-based nutrition, supplementation, and lifestyle therapies from peer-reviewed studies that your oncologist probably hasn't told you about.

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Multiple Myeloma Clinical Trial? Understand Pros and Cons

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“It is essential to allow (multiple myeloma) patients to report their own experiences of adverse events and to incorporate these reports into oncology clinical trial, according to Italian researchers.”

When I was diagnosed with multiple myeloma (MM) in 1994 I was told that my cancer was incurable and had an average life expectancy of 3-5 years. Based on this information much of my decision-making during the first few years of my MM experience was based on short-term thinking such as my decision to participate in a multiple myeloma clinical trial (CT).

“Well, if I only have a few years I might as well help my fellow myeloma patients.” 

If you are considering a multiple myeloma clinical trial, there are pros and cons to understand.

Skip ahead to today- 25 years or so. If I knew then what I know now… The two most common statements made about Clinical Trials in the United States today are:

  1. Clinical Trials i.e. double-blind, placebo controlled testing is the “Gold Standard” of drug testing. As if to say there is no other way to test for new cancer drugs.
  2. Participation in Clinical Trials is abysmally poor. Only 2% of the possible patients participate in Clinical Trials. 

If you are a MM patient considering CT participation please understand the basic challenges before you enter a trial.

Please read this testimonial from the longest living myeloma patient that I know.

“Hi David, Thanks for all you do to help those of us with cancer. As you know, I was diagnosed with stage 3 multiple myeloma and told by major cancer center I would live 3 years at most. That was 25 years ago.

I have been physically active throughout these 25 years. Much of our story is available by searching my name, James Bond, with multiple myeloma.

I believe clinical trials, second opinions, daily exercise, and partnering with our medical team are key reasons for my robust survival. To date, I have entered 6 CTs, which helped at least 2 new myeloma drugs get FDA approval. I was always treated very well in each CT. I would have died in 2002 without one clinical in particular.

Contact me at Jim.bond48@gmail.com for my beliefs more of us should enter clinical trials, if they make sense to our situation.”

If you are a MM patient considering CT participation and would like some help to possibly avoid the problems with clinical trials cited below, scroll down the page, post a question or a comment and I will reply ASAP.

Thank you,

David Emerson-

  • MM Survivor,
  • MM Cancer Coach
  • Director PeopleBeatingCancer

Recommended Reading:


The Cost of Trials

“The nausea I had felt that day returned some time later when I received a bill for $4,567. Because standard practice of care for recurrent ovarian cancer includes a CT every three months, the trial did not cover the cost of this scan.”

CT participants are led to believe that ALL trial costs will be paid by the trial sponsor.

Institute of Medicine Urges Broader Sharing of Clinical Trial Data

“Specifically, the IOM suggests that summary level results, including adverse event information, should be publicly available no later than one year after a trial has been completed.”

CT participants need to know if a drug in their trial may cause a serious adverse event.

Poor Geographic Accessibility of Advanced Cancer Clinical Trial Sites

” In a study reported in JAMA Internal Medicine, Galsky et al found that approximately 40% to 50% of patients with metastatic breast, prostate, colorectal, and lung cancer need to drive over 1 hour one-way to reach a trial site.”

CT participants may have difficulty driving “over 1 hour none-way to reach their trial site.

Patient Voices Essential, as Docs Underreport Toxicities

“It is essential to allow (multiple myeloma) patients to report their own experiences of adverse events and to incorporate these reports into oncology CTs, according to Italian researchers.

Currently, the adverse events experienced by patients undergoing anticancer therapy are too often undocumented by physicians…”

CT participants must understand the possible adverse events and must report their own experience of adverse events.

 

 

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5 comments
Elderly Multiple Myeloma Diagnosis? Fasten Your Seat Belts! - PeopleBeatingCancer says a couple of years ago

[…] Multiple Myeloma Clinical Trial? Understand Pros and Cons […]

Reply
Multiple Myeloma Diagnosis- Seniors Face Challenges - PeopleBeatingCancer says 3 years ago

[…] Multiple Myeloma Clinical Trial? Understand Pros and Cons […]

Reply
James Bond says 5 years ago

Hi David, Thanks for all you do to help those of us with cancer. As you know, I was diagnosed with stage 3 multiple myeloma and told by major cancer cener I would live 3 years at most. That was 25 years ago.
I have been physically active throughout these 25 years. Much of our story is available by searching my name, James Bond, with multiple myeloma.
I believe clinical trials, second opinions, daily exercise, and partnering with our medical team are key reasons for my robust survival. To date, I have entered 6 clinical trials, which helped at least 2 new myeloma drugs get FDA approval. I was always treated very well in each clinical trial. I would have died in 2002 without one clinical in particular. Contact me at Jim.bond48@gmail.com for my beliefs more of us should enter clinical trials, if they make sense to our situation.

Reply
Sonya Monroe says 7 years ago

David,
I am wondering if your treatment at the Burzynski Clinic involved the 23 hour a day antineoplaston therapy or did you take tablets. I was put on tablets and later they developed a liquid form of the tablets which I took for several years. If I do go back to them, I will be put on the Liquid form of the tablets again, although improved, because at my request they removed the red dye from the liquid.
Thanks for your help.
Sonya Monroe

Reply
    David Emerson says 7 years ago

    Hi Sonya-

    My ANP treatment at the BRI was liquid but for 20 hours daily. Two 10 hour bags of ANP. I did that therapy regimen for 10 months and then switched to 60 tablets daily. Does this answer your question? If not let me know. Thanks.

    David Emerson

    Reply
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