Ted Kennedy

I just want to make a small clarification for those of you who keep mentioning Ted Kennedy in all your messages about Duke.  Duke is a very good facility, but by no stretch of the imagination, the ONLY facility doing good work with braing tumor patients.  Now to clarify.  Ted Kennedy went to Duke for only his surgery.  All of his further treatment was done at Mass General. 

I'm new here and I've definitely noticeda trend of everyone who lives the longest saying they went to Duke - what does Duke do differently?  Could anyone tell me what treatment options were different at Duke?  What are the other really good places? We're in Wisconsin and looking at UW Cancer center in Madison, but I want to go wherever's best... My Dad is physically healthy and he deserves the best chance possible. 

We are from Canada and Dad is at Duke for treatment.  The difference for us was night and day.  Up here you get your standard treatment, a clinical trial if your lucky, and that's about it.  There is not a lot of hope involved.

At Duke it was shocking, doctors giving you their cell and home numbers, People jumping through hoops to make things happen for you (lots of crazyness involved with getting treatment in the US).

 They just have a different attitude than we were used to.  If you are willing to fight, they are willing to do whatever it takes, they dont give up.  Their motto of "At Duke there is Hope" is exactly what we felt when we started dealing with them.

 That said, I am from Canada, things are different here, it is tough enough to get an appointment with a specialist, let alone have them give you their cell number!

Duke is a fantatstic facility, no question.  My point is there are others.  Those of you who say it has to be Duke or nothing are virtually telling others that unless you go to Duke you don't have a chance and this is just not true.  You leave people feeling like they have let their loved ones down by not taking their life savings and running off to Duke.  There are wonderful facilities throughout the country.  I have many long-term survivors at our small clinic in Colorado.  They've never been to Duke and they are surviving because of a dedicated group of clinicians who dare to be aggressive and treat for survival and cure.  We treat patients from all over the world; China, Norway, Canada and all over the US. 

In September we hotsed our 6th annual long term survivors reception for patients with grade 3 and higher tumors who are 3 or more years from diagnosis.  I had 74 patinets to invite this year and one fellow was celebrating his 20th year of survival. Another was at 19 years, one at 18 years. 

I concur.  University of Virginia where I'm treated is top notch.  There are several cancer centers with outstanding surgeons, radiologists and neuro-oncologists working in teams.  I would not trade my NO, Dr. Schiff, for anybody.

Larry

My husband is a patient at Dr. Arenson's clinic in Denver and the care is outstanding.  They too give cell phones, immediate information, extremely sensitive care and they are not afraid to go the distance with you understanding and relating all the liabilities while they try to give you a chance to live. 

If you live anywhere near the Denver area or can get there readily, I urge you to move immediately towards CNI/Dr. Arenson as you will be so overwhelmed with this brilliant man and this extraordinary clinic of care.  Roxy in Colorado  

We give 2 thumbs up to UCSF!

 

On 10/13/2009 Lorre G wrote:

I just want to make a small clarification for those of you who keep mentioning Ted Kennedy in all your messages about Duke.  Duke is a very good facility, but by no stretch of the imagination, the ONLY facility doing good work with braing tumor patients.  Now to clarify.  Ted Kennedy went to Duke for only his surgery.  All of his further treatment was done at Mass General. 

It is my understanding (since we are receiving treatment at Duke) that Senator Kennedy did receive some treatments at Duke for a time.  The Preston Robert Tisch Brain Tumor Center is an amazing facility and give hope to all of us dealing with this dreadful disease, but Lorre is absolutely right -- there are many wonderful facilities that offer quality care and amazing research.  We are thrilled with the treatment my  husband is receiving there and are lucky to live nearby. 

I understood that Kennedy was being treated at Mass Gen with Duke overseeing his treatments.  They will routinely do this for anyone.  That being said my husband is just shy of being a 6 year GBM survivor and he has never been to Duke. 

Count me in on UVA and Dr. Schiff. My husband has had top of the line care. Even his neuro-surgeon, Dr. Shaffry(sp) is  concidered one of the best in the country.

Right after my husband had surgery and was dx,I called Duke for a second opinion. Dr. Friedman said my husband is getting "world class care".

UVA and Duke are very close in distance. I feel sure Dr. Schiff and Dr. Friedman on are the same page.

I know it' s still soon after his passing, but too bad we havn't heard anything from the Kennedy family about their plans for funding research or an awareness campaign.

L