Alternative medicines: Is it allowed to post... - Lymphoma Canada

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Alternative medicines

denmanjemima
denmanjemima

Is it allowed to post chineese tea concoctions etc as well as alopathic options?

3 Replies
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Hi denmanjemima,

You have posted your question on a HU group that is very small and has few members. The best answer can be found on another HU group

healthunlocked.com/cllsuppo...

The response from AussieNeil on the second page is quite long but extremely helpful, please read all of it.

Here is a link to what I consider a balanced and helpful recent article about how persons with cancer can navigate all the information about complementary and alternative treatments out there. It was written by a naturopath trained in cancer care who practices at the Ottawa Integrative Cancer Centre in Ottawa, Canada.

oicc.ca/en/blog/post/103?ut...

Len

Thanks so much Len. It's a bit confusing how to follow the larger group. I pressed follow so maybe i joined. I'm a bit of a ludite. I am taking chaga tea. My chiropractor says he has cured lymphoma with it. It is a fungus growing on northern birch trees in northern Ontario and Siberia. The winter temp must hit -40 . i started 3 weeks ago. It's relatively inexpensive and tastes quite ok. I have a local tea man. I will keep the group informed as to my levels. It is just something to do instead of waiting till my disease needs chemo. It makes a huge psychological difference to be doing something. I don't have to believe in it. I am just adding it to my food and vitamin regime.The article was excelent

As the other posts indicate, using foods or alternative/natural medicine is usually not a significant problem, as long as a MD is monitoring your blood and overall health, so when needed appropriate medicines can be used.

Steve Jobs is a good example of someone that could have been cured with scientifically proved medicines, but tried to use alternative treatments and died far to early as a result.

And these days, Chemo is not required or needed for many Lymphomas.

However I do take strong objection to any medical professional claiming to have "cured" lymphoma with tea. That is medically irresponsible and dangerous to patients. That claim should be reported to your local medical licensing board to remove his license to practice.

Here is a post I shared from another patient support group:

The Problems with Testimonials PDF version

lymphomation.org/Testimonia...

"For many centuries doctors used leeches and lancets to relieve patients of their blood. They KNEW bloodletting worked.. EVERYBODY said it did. When you had a fever and the doctor bled you, you got better. EVERYONE knew of a friend or relative who had been at death’s door until bloodletting cured him. Doctors could recount thousands of successful cases."

See also:

When Laypersons Give Medical Advice

lymphomation.org/CAM-layadv...

You can't tell in any individual case what would have happened if nothing was done, or something else

- particularly for a type of lymphoma that is known to wax and wane - that has a variable clinical course.

Further, cancers are heterogeneous - the genetic changes vary from person to person within the same type of cancer.

Such accounts can't inform about the number of persons who have used the intervention and did not benefit or were harmed.

There is no denominator - the number of patients studied.

The denominator tells us if the result are likely to occur in 1 of 5, or rarely - in 1 of 30,000. Testimonials cannot provide even an estimate of a rate of effect in others,

or if the effect that is measured was even caused by the intervention.

In clinical science a pre-specified study size is required to provide a rate of an event or treatment effect.

A control group is often needed to establish causality - that the treatment (or part of the treatment) caused the outcome.

This is the reason that expensive and large controlled studies are often needed before a drug can be approved for the treatment of a disease.

People who die cannot testify

Patients who have tried and failed an alternative strategy cannot be accounted for.

Only the "successful" outcomes are reported, which may be 1 in many thousands.

Compare with peer-review clinical trial where the number of patients receiving the treatment

are known up front (prospectively), and the positive and negative outcomes are measured uniformly - and reviewed independently.

The authenticity of the report?

We cannot know if the person reporting the benefit really has the medical condition,

or if he or she is reporting the outcome accurately?

With testimonials there is no follow up, or independent review of the outcome over time.

Did the person relapse shortly after the testimonial?

The biases of the individual reporting the case?

Does the individual have a financial conflict of interest or strong belief?

Do they sell the product or charge a fee for dispensing the information?

Is the testimonial a way of validating their personal decision process and theories?

The specifics of the case, such as the natural history of the disease?

Even for cancers with a very poor prognosis there are case reports in the literature of spontaneous remissions, independent of any intervention.

Some types of cancer behave indolently -- and do not progress to a point requiring treatment.

People sometimes win the lottery , but this does not make playing the lottery a good bet - particularly when betting your life.

How the outcomes were measured, when, and by whom?

Was the reported success objectively measured and validated by independent physicians?

Is it a patient reported outcome?

Was it that the patient felt better?

What tests were used to measure it? What happened later?

.... and did the intervention lead to a lasting and meaningful clinical benefit?

Is the condition self-limiting - does it sometime self-correct with time?

What other medical treatments were given shortly before or after?

A CT scan will often show lesions after standard treatment that are necrotic scar tissue. Credit might be given to an alternative practice used AFTER this treatment, when it was merely the resolution of a scar tissue over time, a normal bodily process.

Was the tumor removed by surgery prior to the alternative practice?

The accuracy of the diagnosis?

Was it a false diagnosis of a cancer, or a cancer of a type with an indolent course?

For all of these reasons it's prudent to regard testimonials with suspicion - particularly if the report is implausible, scientifically. Scientists get cancer too, as do their children. Do scientists think the approach is plausible?

Similarly, case reports have many of the above limitations - cannot establish causality, and can't be the basis for predicting outcomes in others. For example, if one patient receives regular treatment followed by a study drug, it's not possible to be certain that the second part of the treatment improved the outcome.

Len