Re: intrepreting individual outcomes - the value of stories!

[Guest guest]

re: Betsy, Greg, Reno and I are not " selling " anything - not even

false hope. But, each true story is amazing in how patients cope and handle

diagnosis, treatment decisions, and the subsequent failure or success they

experience.

Dear Jama,

Yes, be confident of that! Individual outcomes that are authentic* (as in

yours, 's, Terry's, Joanne's, Betsy's etc.) provide needed hope ..

shows what's possible, even if they can't guide others reliably, or be

considered evidence. The therapies received in these instances being also

previously approved and tested ... (or parts of the them).

What prompted the caution was a post regarding how a patient died following

a cord blood transplant. My concern was that folks might conclude that

cord blood transplants are to be avoided based on a story like this - even

though that was not the intention. But we don't know if cord blood

recipient had other viable options, and how many in similar circumstances

might be saved.

In any study you have good and bad outcomes ... the study size providing the

denominator - an important reference point or context. A single account can

give hope, but it can't tell us (lacking a denominator) how likely a given

intervention or strategy will help or harm others - or even what part of

what was done truly effected the outcome.

In Joanne's case, we don't know how many would do as well with a similar

protocol (sequential therapy with bexxar), or which component was most

important. Even in similar circumstances there are factors we can't account

for, such as differences in the same type of lymphoma, the immune status,

how we metabolize the same drugs. She could have been lucky, and others may

be mostly harmed?

By authentic* I mean we are confident that the story is true, as is the

diagnosis and the reported treatments. A lot of testimonials are floating

about that cannot even be verified as true. Person's touting themselves as

cured by juicing, but we don't even know they had a cancer, or what type.

Anyhow, an authentic story can provide needed hope, but not evidence.

Hope this clarifies?

~ Karl

cc: Other lymphoma support lists because this topic might be of general

interest. Note: Full names and email removed from this reply to protect

privacy