Category: News


It’s been a while since I posted anything. Time gets away from me.

I have an appointment at Duke on August 2nd. I’ll start all the tests that need to be done prior to SCT, such as bone marrow biopsy (joy), EKG, blood tests and more.

I’m typing this from my new MacBook! I got this so I can do podcasts and videos.

More soon!

This just in

This came to me by email. It looks interesting. I have XM Radio, so will try to remember to listen.

TeleSupport?? Cancer Network

This Sunday on The Group Room?? cancer talk radio show

Sunday, July 15, 2007
1???3pm PT ?? 4 ??? 6pm ET

Multiple Myeloma

Nearly 20,000 people will be diagnosed with this cancer of the plasma cells (I think they meant to put “each year” here). This is often a painful disease and while not curable it is treatable, so if you or someone you care about is dealing with Multiple Myeloma, then there are clinical advances you need to know about. Join us in The Group Room as we partner with the International Myeloma Foundation to talk about the issues that impact patients and their loved ones with host, Selma Schimmel, CEO & Founder of Vital Options International and special guests:

Dr. Brian Durie

Senior Advisor, Hematologic Malignancies, National Director, Multiple Myeloma, Aptium Oncology, Inc., Attending Physician, Cedars-Sinai Medical Center and Outpatient Cancer Center at the Samuel Oschin Comprehensive Cancer Institute, Los Angeles, CA; Chairman, International Myeloma Foundation

Susie Novis

President, International Myeloma Foundation

Call in and participate!
1-800-GRP-ROOM ?? (1-800-477-7666)
or e-mail us at

For a listing of stations in your area or to listen to the live Internet Simulcast visit The Group Room can be heard live via XM Satellite Radio on TalkRadio Channel 165. Download podcasts of The Group Room at iTunes and iRadioNow!

The Group Room is produced by VITAL OPTIONS INTERNATIONAL, a non-profit cancer communications, support and advocacy organization, in association with Premiere Radio Networks.

Vital Options International
4419 Coldwater Canyon Ave., Suite I ?? Studio City, CA 91604-1479
Tel: 818-508-5657 ?? Fax: 818-788-5260 ?? Toll-Free: 800-477-7666 ??


Here’s a response from Dr. Fonseca regarding the paragraph from my BMB report below. I sure do feel better now.
There is little information regarding the tetraploidy as prognostic marker. The fact that you have avoided SCT for 4 years already is in it of itself a very good prognostic sign :)

Thank you,

Rafael Fonseca MD

Abnormal tetraploid clone?

I just got the full report from a bone marrow biopsy that was done last month at Mayo. There’s a new thing I’ve never seen before, so I’d like to know what your experiences are with this. Here’s the paragraph I’m concerned about:

The result is abnormal and indicates a plasma cell clone with an IGH gene rearrangement and monosomy 13. In addition, approximately 50% of plasma cells had a tetraploid version of this clone. An abnormal tetraploid clone is reportedly associated with an unfavorable prognosis in multiple myeloma.
Reference: Fonseca et al., Blood 99:3735-3741, 2002.

I’m seeing Dr. Orlowski next week, and will ask about this, but I’m checking to see if anyone has personal experience with this, and can offer an explanation of what it means in layman’s terms.

Living With Cancer on Discovery Channel

As part of “Koppel on Discovery,” an original Discovery Channel series, Living With Cancer premieres on Sunday, May 6th at 8PM ET/PT, simultaneously on Discovery Channel and Discovery Health. The two-hour documentary will be followed by a live town hall meeting led by Ted Koppel and a panel that includes Leroy Sievers, Elizabeth Edwards, Lance Armstrong.

MM (Multiple Myeloma) & MDS (Myelodysplastic Syndrome) Patients & Caregivers

MM (Multiple Myeloma)
MDS (Myelodysplastic Syndrome)

Patients & Caregivers

Clinical research study on a newly launched medical product. The purpose is to gain insight and gather opinions from patients and their caregivers that are diagnosed with MM or MDS. It is not necessary to be taking medications to participate. All information is completely confidential and used for research purposes only.

In person 45-50 minute interview

Locations & Dates -Philadelphia, PA – 5/10,5/11,5/12

Fort Lauderdale, FL ??? 5/14,5/15

Phoenix, AZ ??? 5/16, 5/17, 5/18

Participants receive $150 cash.

Please contact to schedule or ask questions.

Jan Mallery-Groom RN
Project Manager
212-217-0407 / 201-284-8201