My Malignant Melanoma

The US FDA have recently issued a warning against Miracle Mineral Solution (aka MMS), often marketed to MM patients.

To quote:

The product, when used as directed, produces an industrial bleach that can cause serious harm to health. The FDA has received several reports of health injuries from consumers using this product, including severe nausea, vomiting, and life-threatening low blood pressure from dehydration.
Consumers who have MMS should stop using it immediately and throw it away.

Couldn't be clearer advice!

Labels: Miracle Mineral Solution, MMS

Rory's story has been updated, and Marsha has started a Facebook group for UK MM patients.

A distraught American poster over on the Melanoma Board wants to believe that SNB can make his brother's thin melanoma 100% survivable, rather than relatively survivable compared with thicker MMs. One can see how this is emotionally the right answer for him, but it is not borne out by the evidence, as he imagines.

He has confused himself with a single study1 into believing that the only reason SNB is not done on such patients is because of the estimate that it would take $627,000 to $931,000 to save a single life by the use of this technique. In the real world, this is of course unfortunately reason enough. NICE uses £30,000 as the upper limit of economic treatment per Quality Adjusted Life Year. One can understand how relatives can put an infinite value on the lives of their loved ones, but spending £500,000 to save one life means that others are denied treatment when there is only so much money to go around.

Unfortunately, neither is the evidence that SNB has any effect on outcome for any MM as strong as he wishes to believe.  He quotes a German paper 2 addressing quite a small a small group of patients from 2007, which says "Our data suggest that SLNE seems to nearly completely eliminate the risk of melanoma recurrences in patients with melanomas between 0.76 and 1 mm thick". Note the caveats on thickness, tumour type, the "suggest" and the "seems". Follow-up in this study was only for ten years, during which time, far more patients died of non-MM causes than from MM. Only non-ulcerated MM between 0.76 and 1mm thick were studied. Note that they made quite a faint claim only that it nearly completely eliminated the risk of recurrence over the ten years they studied. But it's not all over at ten years, consider this graph of percentage survival for patients with MM less than 1mm thick:















Source: 3

The Germans said that it might be that there is a difference between the frequency of recurrence after up to ten years of non-ulcerated MMs between 0.76 and 1mm thick between people who have SNB and those who do not. No conclusions about ulcerated MMs, other thicknesses, and other time-scales can reasonably be drawn from this study.

No one other than our confused poster has said that SNB can make all thin MMs 100% survivable. Everyone is entitled to an opinion of course, but this opinion is in conflict with that of experts, and looks like wishful thinking once the evidence offered in its support is inspected.

I am all in favour of patients empowering themselves with information, and at least this guy's self-education hasn't led him to the altie side, but it's so hard to keep yourself from believing only the evidence that supports the conclusion you want to draw, even if you have a scientific training.

He's getting a rough time from the people he is upsetting with his proselytising over on the MM board, but we should really feel sorry for him, to the extent that this is possible.  This is his way of not coping with his brother's life-threatening illness-denial and anger.

Labels: sentinel node biopsy, SNB