I have gastric cancer, at the age of 31, which is also quite rare. Look at
it this way; you have a much better chance of tolerating the treatments well
than the "average" person with CLL. I'm sure you'll do fine - but you need
to keep your attitude up!
I don't have any info about CLL, but you might want to try posting to cancer-l
(to subscribe, send a message to email@example.com - the body of the
message should say "subscribe <your name>" - this is a very active and very
knowledgable group. To post a letter, send it to firstname.lastname@example.org)
Also, if you're interested in clinical trials, you can try the list
email@example.com (again, to subscribe write to firstname.lastname@example.org).
Good luck to you. So far I've had surgury and six rounds of chemo - I start
the seventh on Monday. You're at a good place if you're going to
Sloan-Kettering, so I'm sure you'll do great.
lots of love - and various animal sounds
Neurocognitive Assessment Unit
Yale\CMHC rm. 42
34 Park Street
New Haven, CT 06519