MICHAEL BRECKER NEEDS BONE MARROW DONOR

[johnagrandy]

Forums administrator: Can we please pin this topic to the top ?

FROM: Susan Brecker

SUBJECT: Michael Brecker needs your help.

Dear Family and Friends,

My husband, Michael Brecker, has been diagnosed with MDS

(myelodysplastic syndrome), and its critical that he undergoes a stem

cell transplant. The initial search for a donor (including Michael's

siblings and children) has not yet resulted in a suitable match.

Michael's doctors have told us that we need to immediately explore ALL

possible options. This involves getting as many people of a similar

genetic background to be tested.

There are some important points to understand concerning this process:

1. The screening involves a blood test only. It can be done very

quickly either at a marrow donation center or at a LOCAL LAB. The cost

is anywhere from $40 to $75 and your insurance may cover it. (In NYC,

you can call Frazier, at the NY Blood Bank, at 212-570-3441, and make

an appointment for HLA typing. It costs $40.00.) Check with your

local blood bank, or go to http://www.marrow.org to find the donor

center nearest you.

2. Your blood typing information can be posted on the international

registry, if you choose, where it would also be available to others in

need of a transplant. BEING ON THE REGISTRY DOESN'T MEAN YOU HAVE TO

DONATE, it just means that you may be ASKED to do so. You can take your

name off the registry at any time.

3. Should you be selected as a potential donor for Michael, please

understand that there have been tremendous advances in bone marrow

transplants and the term itself can be misleading. Bone marrow

donation is no more invasive than giving blood. Stem cells are simply

harvested from your blood and then transplanted to Michael.

4. A match for Michael would be most likely to come from those of Eastern

European Jewish descent. If you or anyone you know are in this category

please make a special effort to immediately get tested. Ultimately, you

would be doing something not just for Michael, but for so many more who

are in a similar situation as my husband.

5. You are now part of our internet-based drive for donor testing. If

everyone who receives this can motivate a bunch of their friends to get

tested, and those friends then forward this email to get their friends

to get tested, we will have rapidly expanded the pool of potential

donors. I urge all of you to get tested AS SOON AS POSSIBLE.

Any local blood center/Red Cross center can assist in organizing a

drive for Michael, although it would be desirable if you can get a

large group, e.g. a synagogue, to sponsor it. Should you have any

questions about this, please don't hesitate to get in touch with

Michael's management office at 212.302.9200 or info@michaelbrecker.com.

Thank you so much for your love and support.

We are so grateful.

Susan xo

Edited July 29, 2005 by johnagrandy

[John B]

3. Should you be selected as a potential donor for Michael, please

understand that there have been tremendous advances in bone marrow

transplants and the term itself can be misleading. Bone marrow

donation is no more invasive than giving blood. Stem cells are simply

harvested from your blood and then transplanted to Michael.

Having spent all day Monday in the hospital with a relative who was having stem cells harvested from bone marrow I can attest that this is correct. The procedure was almost completely painless and was very, very easy for the donor.

My thoughts go out to Michael and his family. I hope a match is found soon.

[johnagrandy]

As I mentioned in the other MB topic, I have been through bone marrow extraction myself and it is nothing at all really. It has no lasting effects on your health, provided you are healthy to begin with.

It is a near-riskless procedure.

I've got a scar on my very lower back and had some stiffness and pain in that area for a few months.

But that was 20 years ago. Today, I'll bet you don't even get a scar because they use all these advanced cutting and taping methods so that incisions heal so that they are almost invisible.

[John B]

Also, I agree with Kevin. It would be a good idea to edit your initail post and remove everyone's email addresses so they don't get spammed.

[johnagrandy]

Ok. I edited out all the e-mails. Sorry about that. I didn't even see them.

[Dan Gould]

I was a bone marrow donor for my younger brother (who thankfully is now a lawyer and 8 years cancer-free, after being given a diagnosis of a 20% five year survival rate, 40% with a successful bone marrow transplant). Unless things have radically changed, I wouldn't compare it to blood donation, unless they are taking blood through high guage needles shoved a few dozen times into your ass.

Just wanted to mention that. Of course I encourage anyone to register for the bone marrow registry - in fact, ironically enough, today I am wearing my "Save a Life - Get Tissue Typed" t-shirt.

[John B]

Unless things have radically changed, I wouldn't compare it to blood donation, unless they are taking blood through high guage needles shoved a few dozen times into your ass.

←

They have changed. This procedure is very similar to dialysis. The blood is filtered to remove the stem cells an is then reintroduced.

[johnagrandy]

Some new info (well, new to me). I talked to someone at marrow.org today and after you have your blood typed it can be up to 2 months before the results are known and in the national database. (It's only $40 for the blood-test.)

Unfortunately, I don't think a national donor organization would necessarily see things the way myself or many of you would ... they might not agree with someone committing to a marrow donation but only for a specific person.

However, even though I don't personally know Mike, his music has had a huge positive impact on my life ... I guess it's a personal decision.

From another website, I found out that for those who can afford it, apparently you can go to a private physician and be tested and can request that the results be sent immediately directly to Mike's doctors.

You can also call this number to setup private testing :

Tepnel Lifecodes

800 915 3695

You have to tell them that you want to donate for a specific person.

It's amazing, I just found out one of my friends is Eastern European Jewish ... and maybe of Ashkenazi bloodline. I'm trying to get him to go on Monday.

Edited July 30, 2005 by johnagrandy

[CJ Shearn]

I heard this news on the yahoo Pat Metheny list. I will call my local red cross blood center monday to inquire about getting a local blooddrive set up for Michael/getting the blood to him in NY for the transplant. I fwd the email to several musicians on the local jazz scene here.

[johnagrandy]

from Joe Lovano's site : http://www.joelovano.com/guestbook/chitchat.php

from JamBase : http://www.jambase.com/headsup.asp?storyID=7005

But I don't understand why the search isn't more publicized. It doesn't show up in any newspapers, any online jazz magazine websites, most jazz musicians' websites, etc.

Maybe I'm mixed-up on this ... but as a huge fan of Mike's I view it as getting the news to all the serious Michael Brecker fans out there ... if they have the right genetic background it's very likely they might want to go ahead with the potential donor blood testing through a private doctor, and if they match forward the results to Mike's doctors.

I'm sure there are thousands upon thousands of fans out there who don't know. I know that I'm so busy with my work that I don't spend much time keeping up with news anymore.

Edited July 31, 2005 by johnagrandy

[johnagrandy]

http://www.drjazz.com/conf/MichaelBrecker/page1.htm

[Joe G]

http://www.drjazz.com/conf/MichaelBrecker/page1.htm

←

That's rather touching.

[CJ Shearn]

yes, it is. What was more touching was when his management personally replied to my email, saying he had read it. I shared a story from my personal life in there.

[johnagrandy]

Not sure exactly when, but Mike's website has been updated with a lot of information:

http://michaelbrecker.com/

The key thing I noticed is that Mike is asking that any able and willing stem-cell/bone-marrow donors step forward for everyone in his situation, not just him.

[brownie]

Article on Michael Brecker in The New York Times today:

August 18, 2005

HIS SAXOPHONE IS SILENT, HIS LIFE IS IN THE BALANCE

By Corey Kilgannon

Michael Brecker, one of jazz's most influential tenor saxophonists over the last quarter-century, has been forced to stop performing by blood and bone marrow disease and is searching for a stranger to save his life.

Mr. Brecker, 56, was recently found to have myelodysplastic syndrome, a form of cancer in which the bone marrow stops producing enough healthy blood cells. His doctors say he needs a blood stem cell and bone marrow transplant, a harrowing procedure that will be possible only if Mr. Brecker finds a stem cell donor with a specific enough genetic match for his tissue type. So far, they have been unable to find one from the millions of people on an international registry for bone marrow donors.

Mr. Brecker vows that his saxophone has been silenced only temporarily.

"I really miss playing and I'll be happy to get back to it, but I'm really kind of dealing with a life-and-death situation now," he said recently, resting in bed at Memorial Sloan-Kettering Cancer Center in Manhattan.

His family, friends and fans have been urgently searching and organizing drives, from his temple in Westchester to the summer jazz festivals worldwide. At the Newport Jazz Festival this month, a table was set up where people could have themselves tested, and announcements were made periodically. A similar drive is planned for the Red Sea Jazz Festival next week in Israel.

Fellow musicians have been spreading the word in music circles, urging people to be tested to find a possible match for Mr. Brecker. There was even a rumor circulating that a match had been found, which turned out to be false.

"I'm trying to tell as many people as I can," said the pianist Herbie Hancock, who was touring with Mr. Brecker in March when the symptoms began seriously plaguing him. Mr. Hancock said he tried to buoy Mr. Brecker with "positive energy" and is telling him to be optimistic that a match will come, enabling the potentially life-saving transplant that uses a donor's healthy blood stem cells to replace the patient's unhealthy ones destroyed by chemotherapy.

Doctors told Mr. Brecker he had a 25 percent chance of finding his match from a sibling or one of his children. But neither his sister, Emily, nor his brother, the trumpeter Randy Brecker, nor either of his children matched. Neither did the distant relatives the family tracked down. He and his family are hopeful about the Red Sea Festival drive because Mr. Brecker's lineage is Eastern European Jewish and doctors tell him patients are most likely to match someone of their ethnic group.

Mr. Brecker said that he injured his back while on tour last August in Japan and received the diagnosis when he went for medical testing, but was told he could resume his busy schedule of performing, composing and recording. He went on tour with Mr. Hancock and the trumpeter Roy Hargrove in March and began having severe pain in his pelvis and lower back. Thinking the cause might be his posture, he got a custom saxophone strap, which did not help. One night, playing at Birdland in Manhattan with the saxophonists Joe Lovano and David Liebman, he could barely get through the evening. Doctors finally told him it was the disease causing intense muscle pain.

"Soon I could only play 15 minutes at a time and then not at all, no matter what I did," Mr. Brecker said.

Hobbled by "pain and a feeling of absolute malaise," Mr. Brecker said, he has been unable to practice or write music. He said he had written songs and arrangements for an entire album but became sick before recording it. He was at Sloan-Kettering for seven weeks recovering from an intense regimen of chemotherapy before being released last week. While there, he listened to iTunes on his laptop and researched his illness online, learning a whole new language with words like leukocyte, antigen and hematological oncology.

"We've entered into this world we knew nothing about," said his wife, Susan Brecker. Their daughter, Jessica, 16, has joined the search, working the phones and the Internet every day. Mr. Brecker speaks to his son, Sam, 12, each evening by using a small camera hooked up to his laptop.

Ms. Brecker said that although the family was desperate for a donor - and would certainly accept a donation from someone looking to donate only to Mr. Brecker - they were urging people not to become "Brecker-only" donors, but rather to sign up with the donor registry.

"I just want to be on the line," Mr. Brecker said. "I want as many people as possible to get tested, not just for my sake, but for the thousands of other people who might need what I need."

The Breckers hope that his prominence will increase awareness and that many more people will be tested and added to the registry as potential donors.

"To us it's a much larger thing than just Michael," Ms. Brecker said. "It's become sort of a crusade for Michael Brecker, but it might make a difference in a lot of people's lives.

"I didn't want him to be a poster boy, but if it takes a 'Save Michael Brecker' campaign to expose people to this, we'll do it."

Mr. Brecker first rose to prominence with his brother in the front line of the pianist Horace Silver's quintet, and the two had several hit records in the 1970's with their group, the Brecker Brothers. He has won 11 Grammy Awards and recorded and performed with McCoy Tyner, Herbie Hancock, Chick Corea, Chet Baker, George Benson, Quincy Jones, Charles Mingus, Joni Mitchell, Jaco Pastorius, Paul Simon, Frank Sinatra, Bruce Springsteen, Steely Dan, Pat Metheny and Frank Zappa, among many others.

Shifting gingerly in his bed and propping up the pillows, Mr. Brecker said an anti-inflammatory steroid had helped ease his the pain. He added that he was gradually gaining enough strength to begin playing again and mused on how long it would take to build up his embouchure.

"I don't know if my neighbors would appreciate it," he said, referring to his fellow patients.

In his private room in Sloan-Kettering's transplant unit, the walls were covered with get-well cards that represent a Who's Who of jazz, including Sue Mingus, Charles's wife, the tenor saxophone giant George Coleman, the bassist Ron Carter and the trumpeter Randy Sandke.

There were also letters from fans and students and friends and family. A homemade card from the Litchfield Jazz Camp hung close to the head of his bed.

"The letters gave me a boost," Mr. Brecker said. "Some of them made me cry. I was so sick and so hopeless and they made me realize there are so many people out there who cared."

He leaned back, a man in limbo not only about whether his body will heal, but also about whether someone on the planet with his genetic type will materialize.

"I'm functioning as if it's going to work out," he said.

[Free For All]

Any recent news?

[johnagrandy]

All that I've heard is bits and pieces from people that the Jewish religious community is getting involved. Synagogues and other organizations.

Also, from yesterday:

http://www.juf.org/news_public_affairs/article.asp?key=6454

I do not believe that a match has yet been found. Mike's website says he goes back into the hospital for more chemo on Sep 31. So that's not good news.

But I try to keep in mind what Mike said he wants : that it shouldn't be about him; it should be about the disease and everyone who suffers. That got me sending an e-mail about MDS out at my workplace ... to a mixed response. Everyone's got their own problems I guess.

[sheldonm]

There was also a big booth set up at the Monterey Jazz Fest, screening people for a possible match. There were always many people in line. Festival organizers made many announcements about Michael and the disease during the three days, as did many performers. Hope they find a match soon (for all those waiting)!

Mark

[Big Wheel]

Heads-up to Miami folks--they are tissue typing at the Michael-Ann Russell JCC in North Miami Beach tomorrow (Sunday) between 10 and 4. I'm going to head to Blue Note Records if they are open and then swing by around 2ish.

[CJ Shearn]

I don't fit any of the donor types, but........ I hope Mike can get well soon!

[Big Wheel]

BTW, the tissue-typing is extremely easy and fast. You basically just swab the inside of your cheek with a Q-tip four times and put it all in a bag to send off to the lab. I strongly encourage people to do it if there are facilities in your area.

[felser]

I match the donor type and am heading to the screening in Jenkintown tomorrow after I get out of church. Any other Philly area guys going? We can meet up.

[felser]

Great turnout for the bone marrow screening in Jenkintown, PA. I talked to one of the guys working there, and he said that they were hoping for 700 people, and that the turnout was actually going to exceed that by a good bit.

[Claude]

From David Liebman's latest newsletter:

MIKE BRECKER’S CONDITION

I am thrilled to report the absolute latest news on Mike Brecker’s condition as of today (Dec 30). Mike has shown great improvement in the blood cell count that is the essence of his recovery after the operation of several weeks ago which basically constituted a transfer of his daughter’s “good” cells into Mike. He is out of the hospital and recovering in an apartment in the city where he was operated on, expecting to be there for awhile as they monitor the cell count. THIS IS GOOD NEWS and everyone’s positive wishes are with Mike and his amazing family.

http://www.upbeat.com/lieb/intervals/2006/

[sheldonm]

Thanks for the link Claude, met Dave a few years ago, great guy! Great new on Michael, here's hoping for a complete recovery.

m!