From: Handcam1@aol.com
Subject: osteogenic sarcoma info

I am contacting you at the suggestion of Bill Suidmack ( Rotarian ). My inquiry has to do with my 13-yr old daughter. She was diagnosed with osteosarcoma of her left femur in Jan of 08. She has been through numerous rounds of chemo, leg salvaging surgery and an eventual amputation. Over the last 20 plus months she has also had several bacterial infections and intestinal adhesions, some of which have required surgery....most recently the doctors found many small lung tumors and has given her basically no chance at surviving the reoccurrence. She was being treated locally at Hackensack University Medical Center, but we recently visited MD Anderson Cancer center in Houston and they put her on a different chemo protocol that has had some success with one or two patients in her situation. Do you have any advice or information that may help us as we continue to seek treatment for our daughter.

My Response to the situation:
Watch this video on a new treatment:
http://www.epeiusbiotech.com/oncology-video.asp

Craig
I just downloaded a bout 200 pages of info to read including some good "stuff" on Rexin-G" a new nanotech gene therapy program that has been give "fast track" clearance for Osteosarcoma under the Office of Orphan Drug Development. I've had my eyes on this new product for sometime. I'll have dtails shortly, but I need to read a bunch. I don't have Bill Suidmack's e-mail so please include him with a copy so he's in the loop and knows I have followed up.

Has anyone mentioned using proton Beam therapy to you?

What chemo regiman are they using?

Have they tried any immunotherapy ideas yet?

Have they mentioned stem cell or cord blood treatment, even in passing?

I am on top of this and have located about 20 clinical trials for osteosarcoma. I need to read potential results to come upi with some suggections. meanwhile I'll contact Dr. Gordon on the rexin-G program. we have talked in the past so getting a hold of her should be realatively easy. More shortly...


RTN. Ed Mattson PHF (Cell: 630.440.7912)

Member, Romanian Association of Preventive Oncology
Board Chair, Rotarian Cancer Support Group
Member, Rotary Club of Mishawaka, IN - District 6540
Co-Chair, Rotarian Annual International Project Symposium and Workshop
National Membership Chair, Disaster Relief Rotarian Action Group-DRRAG

Zone 31-32 Institute is just around the corner!

This is the NETWORK MATRIX which makes using the Humanitarian Network easy. All one has to do is simply click on a box and the matrix takes you through each step to an international project. Take a test drive at www.projectsupportcenter.org.

Working with PDG-7230 Joe Clark and DGE-7230 George Camp we will be rolling out the new Humanitarian Network (or just NETWORK, for short). With the additon of the new NETWORK MATRIX, a network member can set-up an international service project in very short order. The MATRIX will walk you through every step you need to take to do a major project. There are seven areas covering 36 steps that are covered and easy to navigate:

• Project Set-up
• Project Country
• Project Selection
• NGO Partneres
• Funding
• Shipping
• Documentation

"There is so much help from "those who have been there before", it's going to be hard to screw up!" Just to give you an idea of how good this program is, some of the comments we've received are...

"WOW...it's about time we had this kind of resource. We need to put it to work for our Rotarian Action Group" PDG Ron Denham, Director, Water and Sanitation Rotarian Action Group

"I encourage you to carry-on in the Jim Johannsen tradition (Hands Across the Sea program), and get it in the hands of all Rotarians" PRID, PDG-7170 Dr. Bill Cadwallader

"Man, do we need this program" PDG-5730 J.B. Roberts

"We want the first Virtual Project in our district" PDG-7230 Joe Camp

"We need to get you to come to our Zone Institute in Florida" PDG-6920 Kenan Kern

"This will be more valuable than grant money to most clubs!" PDG-7620 Rob Ketron

From:
"KAREN FITZPATRICK"
To:
"ed mattson" emattson0711@yahoo.com

Thanks so much for the awesome meeting. You, my friend are really and inspiration and make me feel so proud to be a Rotarian!

Thanks for all you do to make the world a better place.

Warm regards,

Karen FitzPatrick, President
Rotary Club of Middletown

From:
"John and Arlene Hamilton"

To:
emattson0711@yahoo.com



PDG Tom and Ginny Ryan with John Hamilton
Ed, Thanks for the interest. The information you provided was very helpful in making my decision to go with the DaVinci method. I signed into the hospital at noon on a Wednesday and was released at noon the next day. There were no particular side effects and within a couple of weeks after the catheter was removed everything was OK. Except sometimes sex needs a little help but the level is OK with us.

Although the cancer was at minimum levels and hadn't spread it was pervasive throughout the prostate. At age 65 watchful waiting or some other options did not seem reasonable.

It's been over two years and PSA is zero so all is well. Thanks again for the information and interest. John Hamilton

Rotarian from Croatia seeking help

This is what we do, so we hope all Rotarians will use our Cancer Support Group if and when needed...
Saturday, July 25, 2009 8:52 AM
From:
"Suncica Bulat Wuersching" bulat@kuca-zdravlja.com

To:
Rotarian Cancer Support Group
emattson0711@yahoo.com

Dear Rotarian friend Mattson,

I will take the liberty to address you and ask for you assistance. Namely, I am past president of RC Zagreb Croatia, RID 1910 and my Dad is past president of RC Zagreb and assistant governor in our District. My Dad's wife was diagnosed with metastatic melanoma 4 months ago. I am a medical doctor myself and it is terrible to watch them struggle. We've been in touch with Dr Chapman in Sloan-Kettering Memorial Hospital in NY to seek help for Verica, born 1957 (42 years old), to receive an experimental treatment for melanoma. We've faxed all relevant findings and she was supposed to be included in the study. Although she fulfills all the criteria, suddenly they said she should live in USA for one year.

Since my Dad is a CEO of his own company, it is difficult for them to leave for so long. Otherwise, coming for regular treatment and check-ups is not a problem. I hope I haven't burdained you with our request for your kind assistance. But since it is a matter of survival, I will be so free to beg of you to try getting Verica in the study conducted in Sloan-Kettering Memorian if possible. Thank you very much for your attention. I remain, sincerely, yours in Rotary,

Suncica Bulat Wuersching, PP, PHF, RC Zagreb Centar.
Sent via BlackBerry from Vodafone

Response:

Dear Suncica,

I received your e-mail Saturday morning. I have a couple of very good contacts at MSLCC and will be glad to make a call on Monday to see what we can get accomplished.

I have a couple of questions for you regarding the clinical study....There are six clinical trials for melanoma listed in NIH database. I am familar with all three which utilize immunogical concepts, but I need to know which one is the one you are trying to enroll Verica? :

• Phase 1 clinical study investigating PLX4032 (R7204). PLX4032 is a novel, oral and highly selective drug that targets the BRAFV600E cancer-causing mutation that occurs in most melanomas.
• Clinical study of MOAB 3F8 with I-131 as the toxin in an immunologic setting
• Clinical study of antibody responses with a KLH conjugated bivalent vaccine containing GD2 Lactone, GD3 Lactone with immunological adjuvant QS-DG or OPT-821

Who was the original contact person at MSKCC.

Ed Mattson

Board Chair, Cancer Support Group

Member, Romanian Association of Preventive Oncology

Dear Col Freytes and Col Biggs,

Good to hear that all is going well and that PP Deoraj is doing Rotary proud. Also that Rotarians are pulling out all the stops to ensure a very successful project.

I caught the interview on TV and the message was very clear and appealing. You should have a great turnout. With reference to Guyana, we have six (6) Rotary Clubs there totaling 230 members and my Assistant Governor is Keith Williams. He is the person with whom contact should be made. I have alerted him to the requests you’ve had and asked him to put together a small Committee to work with you and your Team.
His contacts: Home - (011-592) 231-7884;
Mobile - (011-592) 624-8894;
Email – keithw4493@yahoo.com.

Please feel free to contact me for any further assistance. Thanks again for all the wonderful work you’re doing to make a difference in the lives of so many.

Regards.

Astra Da Costa (Ms.)
District Governor 2009-2010
Rotary International District 7030c/o
20 Herbert Street, St Clair,
Port of Spain, Trinidad, W.I.
Office: 868-622-6753
Fax: 868-628-9634
Mobile: 868-689-0841
Home: 868-629-0208
Email: Astra.Da.Costa@ample.co.tt

Check out the below correspondence from the Rotary Club of Trinidad-Tabago...

From: Deoraj Beephan [mailto:http://us.mc507.mail.yahoo.com/mc/compose?to=dbeephan@googlemail.com]
Sent: Friday, July 24, 2009 1:06 PM
To: Biggs, David, LtCol (L); Moreno, Peter, Maj (L); Samson, Lisa, CIV(L)Cc: http://us.mc507.mail.yahoo.com/mc/compose?to=readdyla@aol.com; http://us.mc507.mail.yahoo.com/mc/compose?to=emattson0711@yahoo.com; Freytes, Dennis O LTC MILUSA USARSO; Astra Da Costa; http://us.mc507.mail.yahoo.com/mc/compose?to=rob.ketron@gmail.com; Edmond, Garrett E,CMSgt (L); http://us.mc507.mail.yahoo.com/mc/compose?to=missions-international@usa.net; http://us.mc507.mail.yahoo.com/mc/compose?to=tracy.settle@us.army.mil;

Prindle, Clinton J, LCDR (L)Subject: Beyond the Horizons (BTH)_Trinidad & Tobago

I want to express, sincere thanks to the SOUTHCOM, the wonderful opportunity for Rotary Clubs of Trinidad to be involve with this current mission. The integration with the Rotary Clubs have been fantastic. Lt. Col Dennis Freytes and his XO Major Wayne Guzman, have gone all out to ensure there was full integration with the Civic Community, Governments, and opened the doors to all, to partner and participate in this mission.

Col.Beliner is currently working with the MEDRETE for Cataract Surgery being conducted at the Mount Hope Medical Hospital. The visit by Gen.Chang lead to talks with our Government and key stakeholders to look at the alleviation of over 5000 back log cases cataract and other needs in Trinidad andTobago. Mission-International, Lead by Dr. Brian Luchington, advisor to our Prime Minister Office, is responsible for coordinating the US Team, document approvals, custom and excise, ministry of health approval etc. they put everything together for these programmes to run smoothly.

I am hoping that Rtn. Robert Ketron, and our Rotary International Team of EdMattson, Dr. Leigh Readdy and others, will work towards the alleviation of the 5000 cases of cataract and other corrective blindness for Trinidad and Tobago in the upcoming mission over the next 2 to 3 yrs. As per attached e-mails, Col. Berliner will like to get an idea of there sources, equipment, funding etc, that we can bring forward to make the mission a joint effort, "Working together as One for the People of Trindad and Tobago".

One goal is that the stategic partnership with Rotary District 7030 (which represents 13 countries in the Caribbean including Guyana, Suriname, and French Guyana), and for Trindad to be an example nation to this Joint Partnership with SOUTHCOM and its Humanitarian Missions to the Caribbean. Currently the District Governor of Rotary District 7030 is from Trinidad, DG Ms. Astra Da Costa, to whom thise-mail is also copied. DG Astra, has given her support to the Partnership, so we hope to see this integration become stronger, with improved communications between all involved.

The contact here in Trindad via the US Embassy, is Chief Garrett Edmond. He has done a great job ensuring protocols are maintained and that there is integration of the local entities. As you know, Rotarians are people with resources and networking ability. They can make things happen. This economic turn-around strategic approach is for collaboration and partnership to serve, and to serve meaningfully, with the long term focus of our future, sustainable development and security to the region. Rotary as a non-political or secular entity can make a major difference in bringing the people of nations together to serve. I will be sending a complete report to Rotary International, Chairman for Humanitarian Service Rotary Action Group, Dr. Ed Mattson and will copy SOUTHCOM, through Rtn Dr. Leigh Readdy, for future reference, lessons learned, and recommendations.

RegardsDeoraj Beephan

CHAIRMAN, Civic Coordination Committee, US Army South PACCE Beyond the Horizon 2009Trinidad and Tobago.
Mobile: 868-680-6169
Fax: 868-221-7882
Member of Rotary InternationalnHumanitarian Service Rotary Action Group.
Past President 2008-2009, Rotary Club of Princes Town