Live from Dearborn: Travelog and a Gentle or Heavy Approach. Very Slight Revision

Rivera Court in the Detroit Institute of Arts

Karl asked I post a slightly more polished version with his signature.

It's worth reading twice.

I am in Dearborn, having just finished two days of lectures and little thought about CLL- Ask me about sleep apnea or migraine or circadian problems and I am all over it, but CLL has been happily off my radar screen for a day or two.

I am loving Hockeytown. There is a big hockey tournament in town so kids as young as 6 are found all through the hotel carrying their gear with help from lots of proud moms and dads.

There is also a Star Trek convention here.

Is this great or what?

Saw the powerful Diego Rivera Courtyard at the Detroit Institute of Arts and went to a wonderful activist Sabbath service in an old downtown synagogue, then enjoyed a decent raw organic vegan meal. I was the only one there over 30, and the patrons were diverse to say the least. Next store, crowds in T-shirts and shorts or clown outfits were braving the bitter cold for what seemed to be a rave- I asked one of the freezing guys waiting in the que to get in: DJs, circus, lots of dancing and laughs. Sounds like a rave to me.

Tonight it's Arab food. Dearborn has the largest Lebanese community on the USA.

And I leave for the airport at 4:30 AM. Almost not worth going to bed.

Here is Karl's revision:

Re: "If treatment for cure is necessary; is it possible? If possible, is it
necessary?"

~ Dr Willet Whitmore (on prostate cancer)

... Which seems to apply pretty well to the indolent lymphomas and CLL.
However, for most types of indolent lymphomas treatment is eventually, but
not always, needed. So there are two basic approaches to clinical care and
research.

One being to manage it with treatments that have lower toxicity - and only
as needed.

- With this objective it can be argued that one should treat earlier (when
the need to treat is not evident but expected soon) in order to have a
better chance for the less aggressive therapies to be effective - but also
because milder therapies generally are not as fast-acting and advanced
lymphoma can sometimes require a timely response.

The second goal is to treat the indolent lymphoma with intent to induce a
durable remission (and dare we say it, with a potential for cure) with more
aggressive combination therapy.

- Here treatment is generally deferred to when the need for treatment is
clearly indicated. However, waiting until the condition becomes too advanced
(bulky, causing symptoms) can sometimes limit therapeutic options and lower
the odds of achieving the best results.

Which approach is best? It's sometimes argued that it's better to conserve
one's "bullets" to preserve future options. However, it is also noted that
having a long remission increases your options - allows you to use even the
same therapy again when therapy is needed, and that this might better
preserve therapeutic options and lead to less treatment resistance compared
to using milder therapies more often.

So this is a big reason why --- for the indolent lymphomas --- there is NO
standard of care - no easy, one-size-fits-all formulas for how and when to
treat.

So informed choice is a process, which requires an objective understanding
of our clinical context:

1) The natural history - or anticipated clinical course for your type of
lymphoma,

2) The potential benefits and risks of the current standards of care,

3) An appreciation of the unique and sometimes changing individual risk
factors - such as one's age and performance, the changing behavior of the
lymphoma, or responsiveness to prior therapies.

The clinical context can influence how much risk is appropriate to take when
treating the lymphoma and also how appropriate it might be to ask about and
consider clinical trials.

Karl Schwartz
President, Patients Against Lymphoma
www.lymphomation.org