UPDATE ON: Help! 31yr old newly diagnosed CLL

Hi everyone!!! Just wanted to give the newest update on my brother. I found a familial CLL study being conducted at Dana Farber Cancer Hospital (Boston, mass). I contacted the lead investigator about my brother and within a day they had contacted me back and were willing to see him free of charge!!! We will go there Tuesday next week and I will post an update then. In othet news, we got his FISH results back he had a deletion in 13q & 11q... Any thoughts? I am hearing this is odd to have both and one has a good prognosis and one has a poor prognosis. Also, I am finding out more about our family history. Apparently our father was diagnosed around age 56 but they believe he should have been diagnosed must earlier .... He was incarcerated and did not get good medical care. His was very aggressive, he went on some form of chemo.... Had a stroke from it and then was swicthed to a pill form. He is apparently doing ok now. My aunt was diagnosed at 67, she has never needes chemo. She gets immunoglobulin infusions every month and seems to be doing well. Not sure if any of this means anything... Just though I would share the newest updates in my detective work. Thanks for listning everyone! Have a great day.

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  • I have 13 and 11. These clones apparently wax and wane in percentages and can change. 11q responding well to latest treatments so I dont think it is veiwed as much as a high risk as it was before.

  • I am 17P which is the worst. 11q is second but does very well with Imbruvica I am told. Follow Brian Koffman of CLL society. He is 11q and on imbruvica. Check out his web site. He is a wry good guy. 13q is one of the best. Mutated or unmutated is important too. Mutated is best.

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