3/15/08: Dr. Jeffrey Zonder, Hematologist at Karmanos Cancer Institute and new member of the ASG medical advisors, spoke to 20 something of us today at our Michigan Amyloidosis Support Group...... We had Al, AA and Familial family members present.... During a great tasting Mexican lunch (thx RJ), we each had a chance to ask questions of Dr. Zonder about our symptoms and treatments......Thanks to Cay for all her help.... and we missed so many others that were not feeling well today for one reason or another; you know who you are as I've talked to many - be well!...... We'll look forward to seeing everyone September 27, 2008 with Dr. Kumar, Mayo-Rochester and Christine Giresi about LLS Entitlements and the Patient Navigator Program w/ Diplomat Pharmacy.......
Sue Smith, ASG Michigan Facilitator
Our guest was Don M Benson Jr, MD PhD
Assistant Professor of Medicine &
Education Coordinator,
Division of Hematology/Oncology,
Arthur G James Cancer Hospital &
Richard J Solove Research Institute,
NCI Comprehensive Cancer Center,
The Ohio State University College of Medicine
MAYO DAZE 1 -There we were 27 patients and care givers in the Siebens Building (has a green house on the top where many of the plants etc that beautify the Mayo grounds are grown and nurtured), having a wonderful meeting with Dr. Buadi, new to us but not Mayo. All had an opportunity to share and Q and A while eating breakfast and lunch. We had four newbie’s and we all contributed to alleviate anxiety and fear. It was great to have one of our kidney transplants (recent) there with her donator brother and both looked so great. They had been to our first meeting in fall of 2004.
Then Dr. Gertz came off rounds and came by to explain in the most wonderful terminology Kidney and Cardiac Amyloidosis……alleviating even more apprehension and helping to empower the newbie’s as well as the others. The bonus was being treated to a guided tour by Dr. Gertz through the main buildings (Gonda, Plummer, Siebens etc.) and the artwork ranging from Andy Warhol to Auguste Rodin’s 7 foot statue “Jean D’Aire…and Miro to Ellsworth Kelly to Calder and …..well you get the drift…..
The tour of the laboratory (anyone who went to Patient’s Day in Boston would have a bit of déjà vu)….was wonderful and Laura our tour guide (Marina was in a triathlon) was wonderful…..All were to give up their Saturday for us to learn and share and have a wonderful experience…..
Steve and I joined a couple from Arizona for dinner at “The Hubbell House Restaurant” …circa 1854 in historic Mantorville….Population about 1000…but quaint and charming….tomorrow we all have brunch with Dr. Hayman back at the Siebens Building…..definitely a wonderful weekend……and appreciated by all…..…
MAYO DAZE 2 - Dr. Suzanne Hayman was so wonderful to give up her Sunday to get down and dirty with us for our wonderful brunch. Our group bonded beautifully and we did think the requirement of reading a chapter a day of the Wheel of Time Series by Robert Jordan was a bit much; but realize that if Conan the Barbarian and Wheel of Time was her reading material and she was so brilliant and down to earth and amyloidosis savvy doctor, then her suggestions should be followed. Our brunch extended into lunch and we had an educational, bonding, sharing supportive, FUN time……THANK YOU EVERYONE FOR BEING SO WILLING TO SHARE…EVERY ATTENDEE AND DOCTOR GAVE OVER 100 PER CENT.
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3/31/07: A great Amyloidosis Support meeting took place in Detroit this week end. There was sharing, caring, crying, empathizing and learning by the 20 patients and their guests. We missed a few of the oldies who could not come and enjoyed meeting a few new one guests....
Dr. Jeff Zonder told us about the new clinical trials that will be taking place in the future for amyloid research - check the Karmanos website www.karmanos.org for more details, Dr. Peter Vaitketvicius , Karmanos cardiologists, gave us an overview of what happens to the heart with amyloid present and what symptoms to look for and Clifton Scott motivated us to be the best we can be while living for today - a BIG THANKS to all of them!! And of course, Cay for arranging the beautiful breakfast and luncheon and Karmanos for being our host. It was a wonderful meeting!
Thanks to everyone!
Sue Smith
Michigan/Ohio Facilitator
www.amyloidosissupport.com
937-393-1135
NOTES FROM OCTOBER 2006 MEETING:
Another successful meeting Karmanos in Detroit...... Over twenty eager people met to discuss how amyloid has affected there bodies, their families and every aspect of their lives!
HOPE was the THEME and we had many success stories. Two of our ladies have had successful SCT's with 1 being out just 5 weeks and she looked GREAT!! The other lady has her FIRST birthday today and has resumed normalcy..... Other beautiful people have been given an almost CR, gaining weight and feeling life to the fullest! Our AA was not present although he sent his lovely wife. He had commitments with his children! Isn't it wonderful!! As the meeting progressed, 1 gentleman was upstairs collecting his stem cells for SCT. His wife and sister were with us to tell his story.
Thanks to Dr. Zonder, who now has competition for the best looking doctor at Karmanos, we got to know Dr. Muneer Abidi. His presentation was very informative as he kindly broke down & explained amyloid to his attentive listeners. We, in the amyloid world are very grateful to have Dr. Zonder and Dr. Abidi who have helped to form a consortium with hospitals in the Michigan area for patients who need transplants.
Thanks to Cay for all her hard work putting this meeting together. The full (not light) breakfast and the great tasting Chinese lunch, did you hear that! Chinese lunch was eagerly enjoyed by everyone, thanks to RJ from Celgene, who is a friend to Karmanos and the ASG. We had other doctors stopping by to introduce themselves and ask if there was anything they could do to help us and to tell us what a need there was for an amyloid support group..
November 4, while most were at Patient's Day in Boston, I was at the Dearborn Inn as Karmanos was sponsoring a MM Symposium. Lorrie Biard worked with me at an Amyloidosis Awareness table and speak to as many doctors as we could about amyloid. Drs. Gertz, Jakuboviak, Vescole, Abidi, Webb, Richardson and Dr. Zonder presented. It was such an honor to finally meet Dr. Gertz. I look forward to meeting the Boston team soon and the rest of the Mayo team. We are going to discuss that at the Leaders Retreat in June.
We had close to 20 people at our meeting, representing most areas of Amy. Primary, Familial, Care Givers, those who have lost loved ones.........we even had a family that lived a few blocks from another, and a family that grew up in the same town in Mexico as a family from another meeting. We had people from Ohio, Indiana, Illinois and Michigan.
The Hilton Family Hotels did a great job, as usual. Thank you Deborah, and your cast and crew.
Mary O"Donnell was selected by the group to be the "leader" of future meetings; and we will hear from her soon.
There were some Familial patients at the meeting, who had not yet contacted Boston about the new trials; and, we encourage them to do so. A reminder that the contact is Zareen 617-638-4494 zlakhani@amyloid.bu.edu
It was a joy and pleasure to meet everyone; this was the first meeting that I totally led, and administered. Had some great examples. Thanks for your prep help, Gloria, Carmen, and Sue.
Muriel Finkel, 10th October 2004
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Hello All,
Just wanted to tell everyone what an informative, supportive, caring group we had at the Detroit meeting and how wonderful it was to meet each and everyone of you. I needed to hear your story as much as I needed to tell mine!
I am also concerned about getting the message out to Drs. about Amyloidosis as that was a common theme among all of us. I will get information about Amyloidosis out to my Dayton area Drs. via amy pamphlets or by knocking on doors. Then the task of finding ways to get Drs. to test for amy via red congo stain ASAP as we know early detection and aggressive therapy is a must to control this disease......many of our loved ones would be alive today if this would have happened!
Again thanks to our dear Muriel for conducting a fruitful, informative meeting - food was abundant and delicious - Muriel worked hours on the food!!!
Take care to all my new family I met this weekend.
Sue Smith, 10th October 2004
