When my oncologist told me that she could do nothing more for me and my end stage multiple myeloma, I refused to believe that I had no other options.
When it comes to incurable cancer or end-stage multiple myeloma, there is a fine line between false hope and a positive thinking. To be honest, even I can’t tell you where to draw the line.
When my oncologist told me that she could do nothing more for me and that my MM was end-stage, I refused to believe that I had no other options. Dr. Rassiga is intelligent enough, I told myself, but her knowledge is focused completely on conventional oncology.
Maybe I just wasn’t “getting it” according to the Dana-Farber M.D. quoted below. Incurable cancer isn’t going to be cured by conventional therapies like chemo or radiation.
A great college friend of mine who I’ll call Dr. L calls me an “N of 1.” Dr. L means that I am a medical fluke. An anomaly. Conventional cancer refers to me as being “anecdotal evidence.”
In Dr. L’s mind, I don’t count. Curing my incurable cancer is just too much for Dr. L to comprehend.
The problem is that there are lots of n of 1 aka patients who beat the odds. Some of us lived years beyond what we were told and some of us are still alive decades after our terminal diagnosis.
The NYTimes column linked and excerpted below talks about the universe of medical problems for which conventional medicine can ofter few options. As you might imagine, being a long-term multiple myeloma survivor, I write a lot about end-stage cancer…multiple myeloma specifically.
Writing about unproven treatments is nothing new. People scoff at most any therapy that is not approved by the FDA and call these therapies quackery. The cancer therapy that cured my multiple myeloma is a prime example of a controversial therapy.
What caught my eye in the NYT article was contained in the last paragraph of the article.
In short, no organization will ever work to produce “ironclad evidence” for a product that they cannot make money on. We live in a capitalist “for-profit” society.
Conventional oncology focuses exclusively on conventional therapies like surgery, chemotherapy and radiation. When those therapies didn’ work for me, I underwent experimental therapies.
Consider:
- Integrative therapies
- Alternative therapies
If you have been told you are end-stage multiple myeloma, conventional oncology can’t cure your cancer. Consider thinking outside the box. I did…
Click now to learn more about end-stage multiple myeloma
Have you been diagnosed with multiple myeloma? Have you reached end-stage cancer? To learn more about evidence-based but non-conventional MM therapies that have kept me in complete remission from my MM, scroll down the page, post a question or comment and I will reply to you ASAP.
Thank you,
David Emerson
- Multiple Myeloma Survivor
- MM Cancer Coach
- Director PeopleBeatingCancer
Recommended Reading:
“It is not a desired discussion for the doctor, and certainly not for the patient. But an overwhelming majority of people with advanced cancer are under the impression that the chemotherapy they are receiving will cure their disease when it likely will not, a new study shows.
In these scenarios, chemotherapy can alleviate pain and extend life by weeks or even months. It can’t cure advanced cancer.
The disconnect may be related to how doctors discuss treatment options with people who have advanced cancer, and/or the people receiving this news may be in a state of denial about their illness…
Tough Conversations to Have
“We were surprised at the extent of the findings,” says researcher Deborah Schrag, MD. She is an oncologist at Dana-Farber Cancer Institute. “Chemotherapy can be terrific and can be curative in some situations, but not in these cases.”
Still, “a minority of patients did get it,” she says. “In some physician-patient pairs, these conversations work and are necessary to help people make good choices and plans.”
It is a communication issue and probably also a psychological issue. “This is hard stuff to talk about and we need to find ways for people to talk about it better.” She suggests bringing someone with you to all doctor’s visits, and writing things down.
Other tips include asking direct questions of your doctor.
“What if you or your child had a chronic illness that seriously limited or threatened life, and modern medicine had no effective or acceptable treatments to offer you…?
What if you heard about others in a similar situation who had tried a purported remedy that appeared to work, or the method seemed to make biological sense…?
There is another important message in this book worth mentioning, and that is the enormous obstacles to producing ironclad evidence for the kinds of approaches that brought relief to the people Ms. Meadows interviewed.
The treatments often involved a combination of interventions and few, if any, profit-making products. Thus, no company is likely to pay for the needed studies, which would also probably be too costly and complicated for government agencies to underwrite.”