I’ve written blogs on PBC over the years questioning aspects of clinical trials. A great friend of mine, Jim Bond, has lived with multiple myeloma since his diagnosis in 1991, came across one of my clinical trial blog posts today and wanted to add some experienced-based clinical trial results.
Jim has benefitted greatly from his clinical trial experience. I don’t think Jim is exaggerating when he says that clinical trials have saved his life. Jim has lived with multiple myeloma since 1991. If I am the poster child for evidence-based NON-conventional therapies then Jim Bond is the poster child for FDA approved conventional therapies. And we both hail from Cleveland, Ohio. Go figure.
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 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.email@example.com for my beliefs that more of us should enter clinical trials, if they make sense to our situation.
I am passionate about raising funds for ACS Hope Lodges by riding 328 miles over 4 days 10 straight years in the POHR because I know a real obstacle to leaving town for a clinical trial can be lodging money which may not be available. Staying free in one of 32 ACS Hope Lodges or in other free hotel rooms that resulted from the POHR helps overcome this obstacle.
Other supposed obstacles I hear from patients I do not believe are valid reason to avoid clinical trials. Here are common ones:
–I will be treated like lab rat. Not my experience at all
–I will offend my local doctor. You have the wrong doc if he/she places their practice above your health
–I may be given a placebo. In virtually all cancer clinical trials, patients get the standard of care ( if one exists) or the new drug or combo being tested. As soon as one trial arm shows significantly better results, patients are advised to switch to the more beneficial arm. I have personally seen this happen.
–the trial doc will care more about the experimental drug than my health. I saw just the opposite, the docs and nurses cared as much about me as when I was not in a trial.
According to the ACS, Virtually all major advances in cancer treatments have come from clinical trials. No one has funded more scientists (47) than the ACS. The ACS saved my life twice (so far).
July 27 – 30, 2017
The longest living MMer that I know of is Jim Bond.
Jim was first diagnosed with MM in 1991 and is alive and well today (1/5/17)
. Though I have never seen a study that tries to quantify “partnering with your oncologist” I have to believe that it makes a real difference in an MMers long-term survival. If any MMer understands how to partner with an oncologist it is long-term MM survivor Jim Bond.
The comments below are excerpted from Jim’s experiences regarding working with one’s oncologist in general.
“To us, partnering with doctors means the patient is an equal partner. We do not try to be the boss, but we try to get our view fully considered before a decision is made. E.G., several years ago when my MM level began to rise, my doctor wanted to add a second drug to the one I was taking as maintenance. We wanted to raise the dose of the maintenance drug without adding the second drug. Our thinking would save the second drug for when we may need it later.
After a couple phone calls, we convinced our doctor to give our way a try even though
It was not his preference. A key was our agreeing that if our approach did not quickly show results, we would agree to adding the second drug, Our nurse was vital to advocating our position. Our way worked, and my doctor called and said, ” good call”
There are more examples, but I wanted to clarify partnering from your good interpretation that we call researching and staying informed of what is on the horizon. This is also important, along with: being compliant with the drug schedule and recognizing that each mm case is different. These 3 make 7 total key items which make the word, respect.
- Research what’s on the horizon
- Exercise in some way each day
- Second opinions when appropriate
- Partnering with our medical team
- Each case is different
- Compliance with drug and vitamin schedule
David, I have not seen this technique anywhere. I am happy to share my thinking with others. If you do, please attribute it to us.
James D. Bond
July 27 – 30, 2017″
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