The Myeloma Mobile on the Road

Today we visited MD Anderson Cancer Center in Houston, Texas. What was unique about this event was that it was attended not only by patients/caregivers, but also by a remarkable number of myeloma clinicians and staff that wanted to learn more about myeloma - very impressive indeed. Kudos to all of you that attended!

Kelly and Allan Bailey, brother of Texas Senator Kay Bailey Hutchison.

Kelly Cox "loosened up the crowd" and talked about all of the IMF programs available. He then introduced Sheeba (Koshy) Thomas, M.D., Assistant Professor of Medicine at MD Anderson Cancer Center. Dr. Thomas' clinical and research interests lie in why individuals develop Multiple Myeloma and Waldenström’s Macroglobulinemia, and what factors predispose them to these plasma cell dyscrasias. She believes that understanding these issues may help tailor the choice of therapy to specific patients, and perhaps lead to methods of preventing these diseases. To this end, her work focuses on improving current knowledge of the epidemiology of Multiple Myeloma and Waldenström’s Macroglobulinemia, and in developing novel therapies to treat these diseases.

Mikey and Ally with Dr. Thomas.

Dr. Thomas had prepared a most informative and understandable PowerPoint presentation covering topics such as what is myeloma, bone disease, kidney involvement, novel treatments and clinical trials. Her presentation was at a perfect level for newly diagnosed patients as well as "veteran" patients. She took her time in explanations and fielded numerous questions. We thank Dr. Thomas for her time, care and future work in helping to find a way to make myeloma a chronic disease! I also noticed many of the medical staff taking notes! That's cool!

Our thanks to Renee Freedman, MPH, CHES, Program Coordinator, Public Education Office
M. D. Anderson Cancer Center, for all her help in coordinating today's event! :-)

The ending for this event was a bit different than the other events we've had. Unfortunately, Michael had been feeling under the weather since we left Dallas. He is a stubborn Irishman and certainly was going to give it his best shot; except that he did not want to spread his germs to any of the other myeloma patients at the event and risk getting them sick. So Mikey, Ally and I spoke about the Myeloma Mobile and our journey so far. I gave a presentation detailing all of the programs, publications and support services that the IMF offers, as well as an update on BOAC and presentations made at ASH (American Society of Hematology) 2006.

Norma and Burton Jones, Support Group Leaders of the Houston Support Group were in attendance and talked about their group. I encouraged not only patients but all of the clinicians to recommend myeloma patients to attend the group. You all know my mantra by now: "People that attend support groups do better!"

So, it is now time for us to leave the Great State of Texas and head to Louisiana. OOOeeee!

Back in the RV and off to Bobby's home town, New Orleans!

Love and Healing,

Robin

Spike has asked Bobby repeatedly if he can drive, but Bobby is stubborn that way...

It has been a whirlwind since we left Houston! We traveled from Houston to Lake Charles, Louisiana and did an interview with KTLC TV (NBC local affiliate) with Evan Johnson. From there we traveled to Lafayette and interviewed with The Daily Advertiser newspaper (great article! - here is the link)

http://www.theadvertiser.com/apps/pbcs.dll/article?AID=2007708020335

We then interviewed with Fox 15 TV in Lafayette. Next drove to Baton Rouge and interviewed with WVLA 33 TV - and they aired the interview at 5 PM and again the next morning at 9 AM!

New Orleans

Got some sleep and then took off in the morning for New Orleans.As most of you know, Bobby is from New Orleans and was displaced by Hurricane Katrina. He gave us a tour of New Orleans as well as some of the harder hit areas, like the 9th Ward of New Orleans.

The Ninth Ward

What struck us the most was that there is still so much to do there. It is almost 2 years since Katrina hit this area. Rebuilding has started, but there is still debris piled on some roads, other roads are still closed and most disturbing were the slabs of cement, where people's homes once stood; now empty with weeds growing up. Front steps going to nowhere now. These were people's homes now abandoned . . . . gone.

Like Bobby having to start all over again from scratch. I wish all the victims of Katrina peace and blessings in their efforts to put their lives back together.

Bobby next took us through Gulfport and Biloxi, Mississippi. The beaches that had at one time been busteling with vacationers and filled with casinos, resorts and thriving businesses are now bare. Only some debris remains. Empty parking lots, cement slabs where businesses once stood, bent light poles, plumbing pipes going no where. They are working hard to rebuild this area. We stayed at an RV Park right across the street from the Gulf in Biloxi. The woman told us this story:

"The man who owns the RV park is 76 years old and when Katrina came in he decided to ride it out. His RV Park is directly across the street from the Gulf. At that time, there were numerous hotels and casinos on the beach side in front of his property. They all blew down and washed across the street and formed an 8 foot wall in front of his RV park. That 8 foot wall of debris saved him and his Park. He only had 1 foot of water and 1 oak tree blew down. He watched from the window the whole time."

Amazing story - he certainly does not have the protection of the big hotels and casinos anymore as they are all gone.

We made one other very important stop: to meet up with Bobby's sister, Lumena. She was incredibly kind enough to make us some homemade Gumbo - from their mother's recipe!!! Once we got to the campground, I could not wait to eat! I had no idea what Gumbo would look like - nevermind taste like - but was I in for a delicious surprise!! This Gumbo was so mouthwatering good that I not only ate my bowl, but finished up what Mikey had left in his bowl!!! What a piggy!! But worth every savory bite! For breakfast I actually even thought that it would taste good to dip my English muffin into the leftover Gumbo!! LOL! Thank you Lumena!

The Dexter Avenue Baptist Church, where Martin Luther King organized the Montgomery Bus Boycott in 1955.

Today is August 3 and we are driving from Biloxi to Atlanta, Georgia. Bobby drove us through Alabama and we stopped at the Rosa Parks Museum and also Martin Luther King's church and his home. Bobby is an excellent tour guide! He could start his own business! The kids are certainly getting good history lessons. We've all formed a great bond together; Bobby has become like a brother to us!

We should be in Atlanta in about an hour - and we'll be having Andy Lebkuecher, Director Southeast Support Groups and our good friend, join us for a cookout! Maybe I'll even share some of the leftover Gumbo with him! :-) . . . . maybe . . . . . :-))))

Love to all,

Robin
P.S. Don't forget our Event in Atlanta:

Winship Cancer Institute of Emory University
Sunday, August 5 at 10:00 A.M.
1701 Uppergate Drive, 1st Floor Lobby
Parking Lowergate Parking Deck is located behind Winship Winship Building

Hope to see you there!!

Sunday, August 5, 2007 - 10 AM event at Winship Cancer Institute of Emory University.

Andy Lebkuecher and Doris Morgan, new Atlanta support group leader.

Today was very special as it was a visit to Atlanta, Georgia; home of Atlanta Area Myeloma Support Group; one of the largest and oldest myeloma support groups associated with the International Myeloma Foundation. Andy Lebkuecher is the leader of this group as well as Southeast Regional Director of Support Groups for the IMF and our good friend.

Andy and Kelly Cox of the IMF gave a great welcome and overview. Kelly Cox has been a driving force behind this whole project and we are very grateful for his continued enthusiasm and support when we make our visits.

The IMF is happy to be at Emory University to lend our voice to theirs in reaching out to patients. Winship's philosophy in finding a cure for cancer is admirable. Here is a quote from Emory:

"Accelerating discovery and hope is our life's work."

As you read this, you can be certain that somewhere within Emory Winship Cancer Institute, at this very moment, people are thinking, testing, collaborating, exploring.

That's because we know that the next great discovery in cancer research and treatment could come at any time. But only if we commit ourselves, our talents and our time to making it happen.

That commitment motivates and drives the people of Winship every day. Our life's work revolves around a single ideal: to accelerate the discovery of a cure for cancer and to apply this discovery to give people hope."

Dr. Heffner

We thank all of the passionate staff at Emory for working with us to organize today's Event. Dr. Leonard Heffner, Jr. spoke with us about the past, present and hopeful future for myeloma patients.

Dr. Lonial

Dr. Sagar Lonial is a positive man who spoke about the "good, bad and ugly," the incredible strides that have been made in recent years in the myeloma world and the novel therapies that are available to us today.

Michael and I and the kids really enjoyed talking with everyone both during and after the Event. We all learned from each other and shared our experiences as patients, caregivers and families.

We encouraged everyone to attend the IMF upcoming Patient & Family Seminar to be held in Tampa, Florida on November 2-3, 2007. If you have never been to one of the IMF's seminars, I HIGHLY recommend that you go! You can register to attend the seminar on the IMF's website (www.myeloma.org) or by calling the IMF at 1-800-452-2873. Here is a bit of info:

IMF Patient/Family Seminars & Symposia:

The first organization to provide ongoing Patient & Family Seminars, the IMF has held over 100 seminars in 13 countries since 1990. Emphasizing education, advocacy and support, these seminars empower patients and provide invaluable information to the myeloma community.

'Terrific isn't quite strong enough a word to describe my experience at the seminar.'
'Having so much one-on-one time with the experts was incredible.'
'I went to the seminar feeling afraid and depressed....I left inspired and filled with hope.'

As is now our signature ending, Michael and Ally played and sang his song "I'm not Leavin'." Thank you Atlanta for your "Southern Hospitality." :-)

Robin

Next Stop: Norfolk, Virginia here we come!

Today we met with patients and their families who live in the Norfolk, Virginia area. Jerry Walton is a recently retired high school math teacher who contacted the IMF earlier this year wanting to help others. Jerry is a myeloma patient himself and being a teacher understands the IMF's motto of "Knowledge is Power." Jerry attended the IMF's Support Group Leaders Retreat in the Spring and decided that he would start a support group specifically for multiple myeloma patients and their families in Norfolk. Yesterday was their first meeting and we feel privileged that we were part of it!

This gathering consisted of newly diagnosed patients as well as "veterans" that have been dealing with myeloma for over 6 years. People shared their stories and experiences and got to know each other. There is already a bond forming in this group that will continue to strengthen and grow with each new member. We had a very open meeting talking about a variety of topics from what tests to get at diagnosis, discussing treatment options with doctors, kidney issues, osteonecrosis of the jaw and the importance of seeing a myeloma expert or seeking a 2nd opinion. We talked about the IMF's Patient & Family Seminars - and were happy to learn that a few of the folks at the meeting had just attend the Seminar in Teaneck, NJ - and loved it! Please don't forget that the Tampa Patient & Family Seminar is this Fall - check out the IMF's website for details.

After the meeting we went out to a delicious Italian restaurant for dinner and had a great time. Our thanks to Jerry Walton for his outreach to myeloma patients in the Norfolk area and creating this myeloma specific support group! The IMF is happy to continue to work with you and help! The group has already invited me back to talk with them "every week!" LOL!

Meeting Information: This group will continue to meet 10:00 AM to 12:00 noon at Sentara Leigh Hospital Private Dining Room, 830 Kempsville Road, Norfolk, VA on the following Saturdays: September 15, October 20, November 17 and December 15. Interested patients, family members and friends are encouraged to contact Jerry Walton at 757-495-8432 or by E-Mail: jerrywalton@cox.net.

It was a pleasure to meet everyone and please remember to stay in touch! We are leaving Hot and Humid Virginia today for Steamy Baltimore! The heat index here in Virginia is forecast to be 114 today! Yikes!

Stay Cool :-)
Robin

By the way - Jerry Walton successfully completed an interview with Hampton Roads radio station 92.9 The Wave! Here's some information regarding listening information:

Those of you who are in Virginia can listen this morning, Wednesday, August 8 (the news director is not sure what time) to FM 92.9 for Jerry's interview!

Happily for the rest of us, 92.9 The Wave broadcasts live on the internet, so we can listen for Jerry's interview at http://929thewave.com/home.php

Today is Day 55 of our Myeloma Awareness/Education Campaign! We are visiting The Johns Hopkins, Sidney Kimmel Comprehensive Cancer Center in Baltimore, Maryland, which once again has been ranked third best in the nation and the top cancer hospital in the Mid-Atlantic Region by U.S. News & World Report. Johns Hopkins Hospital earned the top spot among all hospitals in the annual rankings for the 17th year in a row. We are honored to be here and happy for all of the patients that come here for treatment.

Some of the people who attended the event.

Baltimore is Arin Assero's hometown. She came to Baltimore a few days ahead of time to arrange our event and to spend some time with family. We got to meet Arin's family and friends for dinner where they tried to show us the proper technique in eating Maryland steamed crabs. Yum-Yum! :-)

Arin showing Mikey how to crack a crab, while her father looks on.

Arin's mom signing the Myeloma Mobile.

The event at the Sidney Kimmel Cancer Center was outstanding - as there was standing room only left in the atrium! Our thanks to all of the patients, families, friends and staff that stopped by to learn about multiple myeloma.

Dr. Huff and Dr. Matsui

Dr. William H. Matsui, whose clinical interests include B Cell malignancies, spoke with us about current research going on at the Center and his work in studying plasma cells and B cells in myeloma. We also heard from Dr. Carol Ann Huff, whose clinical interests are multiple myeloma and amyloidosis. She spoke of her work with patients and clinical trials. Between the two of these forward thinking experts, we were all very encouraged and hopeful for future treatments for myeloma patients.

Laura Baikis and Amy Mone were on hand to help us every step of the way in planning this event in Baltimore - Thank you!!

Arin with Laura Baikis and Amy Mone from the Kimmel Cancer Center.

Michael and I spoke with patients and again felt the full circle of empowerment. People tell us that we are encouraging them - but in turn, they are actually inspiring us to continue on with our journey. We met a woman at the event who traveled down from Washington DC and her hug and the bond we formed said it all. She wants to help others back in DC by starting up a support group! :-)

Thanks also to Adrienne Scally, LCSW-C, who runs the myeloma support group in Baltimore. Adrienne did lots of legwork in getting the word out about this event. If you would like to attend this support group, here is the info: This group meets on the 2nd Tuesday of the month from 1:30-3:00 p.m. in the Weinberg Building Auditorium on the Johns Hopkins campus. For more information, please contact Adrienne Scally, LCSW-C at 410-502-1096.

Dr. Matsui signing the Myeloma Mobile.

We are leaving Baltimore tomorrow for our event at the University of Pennsylvania, which is on Saturday, August 11. Hope to see lots of you there!

All my best,

Robin

As you can tell from the title of my blog - we are now on COUNTDOWN TO HOME!! We left home on June 16 - which was the last day of school for the kids - so if you are keeping track - that was 8 weeks ago. We are all looking forward to our own home, yard, beds, bathroom - real shower! LOL!! Shannon wants to go and run in her yard and bark: "my yard, my yard!" :-)

Today's event was at The Abraham Cancer Center of the University of Pennsylvania. At this event we are happy to have speak with us Edward A. Stadtmauer, MD, co-director of the Bone Marrow and Stem Cell Transplant Program at the Abramson Cancer Center and national leader in the treatment of multiple myeloma. Dr. Stadtmauer has helped pioneer new, non-chemotherapy treatments. These new treatments, which target the mechanisms by which the cancer cells survive and multiply rather than attacking all cells (including healthy ones), are turning myeloma into a manageable cancer and not a moment too soon.

Myeloma - which used to only affect the elderly - is on the rise as it now affects increasingly younger patients. Myeloma, which has an environmental component, was named as one of the cancers for which September 11, 2001 responders are at risk.

Dr. Stadtmauer

Dr. Stadtmauer did a "stand up" act informing us about the numerous treatment options now available for myeloma patients as well as providing information on novel therapies and clinical trials. He kindly fielded all questions and gave his views on topics from immunotherapies to organics. Thanks to myeloma experts like Dr. Stadtmauer pushing forward, conducting research and considering a patient's quality of life, our future looks much brighter with new options currently available and others on the near horizon.

Bobby, Arin, and Philadelphia support group leader, Maddie Hunter.

Philadelphia is one of the support groups that I have visited in the past in my role as Director of Support Groups, Northeast; so this felt like a trip back home with friends. Support group leaders from Philadelphia, Maddie Hunter and Marilyn Alexander, were at the event; as well as Ann McNeill from the Hackensack University Medical Center.

New Jersey folks on the bus - Anne McNeill in front heading up the trip!

Hackensack University was so supportive of the Myeloma Mobile that they chartered a bus for their patients to attend the event at U PENN! Thanks to Ann and Dr. David Siegel for their support and care! There were also folks from the Central New Jersey Support group in attendance. We were happy to meet many patients that were not part of a support group - and that I hope will now join one of the fantastic myeloma support groups in their area. Knowledge is Power - and People Helping People is what it is all about.

Say cheese!

Cynthia Griffo and Barbara Lopez from U PENN did a great job working with Arin Assero of the IMF to make this event a success. Thank you!! Also, as always, our thanks to our sponsors, Millennium, Kyphon and Celgene for all their continued support.

Goodbye to Philadelphia.

We loved talking with everyone in Philadelphia, The City of Brotherly Love. Please continue to reach out to each other and the IMF!

Love,
Robin

We now have 10,843 miles on the Myeloma Mobile. For every mile we've traveled, and for every patient we've met along the way, hope has been eternal. Hope that continues to grow and strengthen with each stop. With this visit to Celgene, there is plenty of reason for hope.

Dr. Sol Barer, the Tuohys and Bob Hugin, president of Celgene

The Event at Celgene Headquarters in Springfield, New Jersey was contagiously emotional, powerful and full of hope for the future - our future. We arrived at Celgene in the morning and were treated like family.

We were greeted and given a tour of the facility, participated in a press conference, and enjoyed a delicious luncheon. The grand finale of this exciting day was meeting with over 750 researchers, developers, scientists and employees of Celgene.

I am particularly grateful since Revlimid is the treatment that Michael is currently on and in complete remission with. He is able to live his life, with a good quality of life. He is my husband, best friend, soul mate and the absolute best dad to our children. Revlimid and other novel therapies have made it possible for us and other myeloma families to have our lives back, and for that we are forever grateful.

The Tuohys with George Muller, David Stirling and Jerry Zeldis, developers of Revlimid

A special thanks to the people of Celgene for collaborating with the IMF to make the Myeloma Mobile project happen. It was our great pleasure to meet each of you!

Lined up to sign the Myeloma Mobile

We have ONE MORE EVENT! Our Homecoming will be on Friday, August 17 at the Leever Cancer Center, 1075 Chase Parkway in Waterbury, CT from 1:00 - 3:00 p.m. If you are in the area, please come out and join us! Our featured speakers for this finale will be: Dr. Paul Richardson of Dana Farber; Dr. Mel Goldstein, meteorologist on WTNH TV and myeloma survivor; Dr. Kurt Sabbath, oncologist at Leever Cancer Center, Mayor Mike Jarjura (Waterbury) and our own Mayor of Prospect, Robert Chatfield. Click on the link on the home page to see the agenda. We hope to see you there! :-)

Back to Connecticut!

With all my thanks and love,

Robin

WE'RE HOME!!!!!!!!!!!!!!!!!!!!!!!!!!

Over 11,000 miles, 63 days on the road, 30 States, 20 Events, and thousands of people.

Our Homecoming Event in Connecticut was a fantastic day with a great turnout from our local support group as well as newly diagnosed patients, caregivers, family, friends and the medical community in attendance.

Dr. Mel interviewing the Tuohys.

The agenda for today was action packed. We arrived at the Leever Cancer Center in Waterbury at 11:30 a.m. to get ready for a live noon broadcast on our local ABC affiliate, WTNH. Our friend and 11 year myeloma survivor, Dr. Mel Goldstein, is the meteorologist on WTNH and he arranged for live coverage of the Homecoming!

A number of people came to the Event at 1:00 p.m. because they said they saw us on the news with Dr. Mel! Thanks to his continued outreach and support in the myeloma community, patients were able to attend the event, get free information/publications from the IMF and hear the latest from our guest speakers.

Arin going over the program with support group leader Niall Doherty.

The day began with Arin Assero of the IMF welcoming everyone. She introduced the Connecticut Multiple Myeloma Fighters Steering Committee, Niall & Marjatta Doherty and Sharon & Orrin Johnson; whom we can't thank enough for all of their work in making this event a success.

Dr. Sabbath

We then heard from Dr. Kert Sabbath, oncologist/hematologist with the Leever Cancer Center discussing treatment and hope for the future.

Mayor Jarjura

Next on the agenda was Mayor Jarjura of Waterbury, welcoming us home and talking about the great strides made in recent years with Waterbury and St. Mary's hospitals joining to help form the Cancer Center.

Dr. Mel

Our next guest speaker was our own Dr. Mel Goldstein. He entertained, enlightened and charmed everyone with his positive stories. Dr. Mel is an inspiration to all myeloma patients for being not just a survivor; but a "doer." Since the beginning of his diagnosis he has strived to help other patients on their journey through myeloma and also to help create awareness of the disease.

Dr. Richardson

Dr. Mel introduced our next guest speaker, Paul Richardson, MD, Associate Professor of Medicine, Harvard Medical School and Clinical Director, Jerome Lipper Multiple Myeloma Center. Dr. Richardson is with Dana Farber Cancer Center in Boston, MA. He graciously provided us with an update on new treatments and clinical trials for multiple myeloma and fielded a number of questions from the audience. It was a pleasure for patients in Connecticut to hear from Dr. Richardson, who is an expert in the field of myeloma, and we thank him for his participation and care. He was stuck in a lovely traffic jam on his way down from Boston; so we are thankful that he made it to the event to speak with us! We hope his trip home was an easy one! :-)

Mayor Chatfield

Michael and I were particularly proud of our next guest speaker. Mayor Bob Chatfield of Prospect (our hometown). Prospect is a small town of about 10,000 people. Michael grew up in this town, and we have had the pleasure of knowing Mayor Bob for many years. He has taken care of our family when we needed it as he does with all Prospect residents. He spoke about the day when Michael first heard the news that he had a tumor. He was there for us then as he is now; we will always appreciate, respect and thank him for his years of true community service. He came up with a slogan years ago: "Welcome to Prospect, the best small town in Connecticut." With him at the helm, it is easy to see why.

Michael, Ally, Mikey and I spoke next and thanked everyone for welcoming us home and supporting us. The conference room at the Leever Cancer Center was packed with patients, family, friends, nurses and staff all there to learn, to become empowered with knowledge and hope.

Back with the team.

Michael and I talked about our journey, shared experiences and discussed the objectives of the myeloma mobile. We informed people of the publications, programs and services that the IMF offers to patients and encouraged them to call the IMF hotline (800-452-2873) and to go to their website at www.myeloma.org to learn all they can and keep up to date with novel therapies and clinical trials. To seek out a myeloma expert to work with their local doctor and become a team with them.

Bobby is reunited with his wife, Tinnesha, and their baby, Anna.

We also stressed the importance of joining a myeloma-specific support group, and how it can help them. Our Connecticut Support group meets the 3rd Tuesday of the month from 6-8 pm at the Leever Cancer Center, 1075 Chase Parkway in Waterbury. We welcome new members to contact us and attend our meetings! Please see our website for details: www.CT.myeloma.org

We ended this last event as we have ended all the others, with Ally & Michael performing his song entitled "I'm Not Leavin'." This was an especially powerful rendition as it certainly struck a chord with our own community.

Thank you to the representatives that came to this event from Celgene, Millennium and Kyphon. Collaborating with companies that work in the myeloma field is of great benefit to patients in helping them to better understand the options that are available to them.

Mikey and Ally with her boyfriend, Judah

We were very fortunate to have media coverage not only from Dr. Mel, but also from Emily Beaver of the Waterbury Republican American, who did a great article in Saturday's newspaper. We also had live coverage from WPLR Radio Station (#1 Rock Station in CT), with John Voket, who broadcast the segment on the award-winning public affairs program, "For the People." In addition to that we were pleasantly surprised with another reporter and camera crew that spent the whole day at the event. They were from the Archdiocese of Hartford's Office of Radio & Television. They will air a story on the Myeloma Mobile project on their program entitled "Crossroads Magazine," whose philosophical foundation is: "There are good things happening every day in our neighborhoods and communities. Relationships are being built through caring, concerned, self-giving people whose good news stories are not necessarily being told on commercial television news." If you live in Connecticut you can watch the segment on the Myeloma Mobile on MyTV9 on Saturday, August 25th at 10:30 pm and
also on CW20 local TV on Sunday, August 26th at 10:30 am. Thanks to all for helping us to reach out to myeloma patients in Connecticut.

Michael and David Smith, IMF Executive Director

Our family has been asked by our local church, St. Anthony, in Prospect to attend this Sunday's (August 26th) 9:30 am mass, and for Michael and Ally to play his song. The church will be hosting a welcome home reception following this mass in the church basement.

Robin's parents, Lorraine and Richard Robbins.

Ally and Michael with Michael's mother, Mary Zarrella, and her husband, Ralph.

Stay tuned, I'll be writing a few more blogs before ending this journey. Thanks for sticking with us!

Love,
Robin