Beaubrun has moved on

[Guest guest]

I want to thank the Group for the support this site has given to

me and my beloved brother in his 5 year struggle with CML.

Regrettably, despite the best medical care in the world, passed

away this week.

Diagnosed almost exactly 5 years ago, at age 45, was initially

on Gleevec (imatinib) under the care of Dr. Sawyers at UCLA

(Los Angeles) and achieved partial remission temporarily. He was then

changed to Sprycel (dasatinib) at the University of Miami, and his

counts went down again on that, but not far enough and after a year

they began climbing again. As there was no bone marrow match

available, on the advice of Dr. Druker in Portland, traveled to

MD in Houston where he was started on SKI-606 (bosutinib) in

August of this year. He was a diligent patient, but unfortunately

because of low white cell function, he caught a rapidly progressive

pneumonia which took his life within one week.

I don't want this post to discourage anyone in their struggle.

had 5 years of full quality of life and kept the full-time job he

loved, working up to the day before he was finally hospitalized. As

a physician myself I know that would not have happened on any of the

drugs we had when I went to medical school. My brother and all

of you are the way medical knowledge progresses, giving each

generation a better chance.

I do want this post to say to those who do not have a " success

story " , to remember that a support group is for you too. He and I

both subscribed to and read the postings of this group, but he was

reluctant to write here when his counts did not go down. Remember,

not all successes are achieved linearly, some have setbacks and later

still do achieve remission. The many success stories gave hope

and nothing is more important in life than hope. In the end it was

not the leukemia that took his life directly, but an infection.

As a doctor, I want to remind those of you who do develop neutropenia

(low white counts) in the early phases on a new medication, that it

is very important to take precautions against infection, because the

effective wbc count may actually be lower than the on-paper number

suggests. had an wbc count of 3 but was in " functional

neutropenia " so actually had an effective wbc count less than 1 and

no defenses against infection. He felt strong enough to take a 5

hour flight to attend a large conference on business 2 weeks ago and

didn't think he needed to wear a mask, or use antibacterial wipes, or

avoid large crowds and long flights, all of which we had advised.

Years of hating too-high white cell counts made sometimes think

that " lower must be better " . Unfortunately, that is not so.

The work towards curing 100% of CML victims continues, and while

losing my brother is so hard, I have to say that in some ways cancer

made him an even better person. He cherished his family (especially

his 11 year-old son ) even more in the last 5 years and took

great joy in many cancer-related fund-raising activities.

chaired one of the most successful " Relay for Life " programs (at

Barry University) for the last 3 years, he actively participated in

Habitat for Humanity and he even represented the American Cancer

Society last year speaking on Capitol Hill.

I know would have wanted me to thank you all and wish every one

of you the best outcome possible.

le Beaubrun, MD

http://www.trinidadexpress.com/index.pl/article?id=161225817

http://www.redorbit.com/news/health/460169/lapping_illness_the_miami_s

hores_relay_for_life/

http://www.legacy.com/Broward/DeathNotices.asp?

Page=LifeStory & PersonID=96992503