Duke Univ. Glioblastoma Iv - How To Find A Doctor?

Husband 42 Dx 11-07

Surgery 12-07

Radiation 6 Weeks Temdor

Now Cycle 5/23 Temdor

MRI show increase in the enhancement and mild increase in size of the residual glioblastoma multiform tumor for the last two months.

Surgeon is willing to help us get in to Duke or MD Anderson if we know who we want to see.  He suggested looking at clinical trials.

My husband is in very good health other than the Brain Cancer.  We'd prefer to be pro-active instead of just waiting to see what's going to happen.  They also suggested a Brain Pep Scan this week.

We live in Arkansas but are willing to go wherever!

Any ideas would be great!

On 5/5/2008 sandram wrote:

Husband 42 Dx 11-07

Surgery 12-07

Radiation 6 Weeks Temdor

Now Cycle 5/23 Temdor

MRI show increase in the enhancement and mild increase in size of the residual glioblastoma multiform tumor for the last two months.

Surgeon is willing to help us get in to Duke or MD Anderson if we know who we want to see.  He suggested looking at clinical trials.

My husband is in very good health other than the Brain Cancer.  We'd prefer to be pro-active instead of just waiting to see what's going to happen.  They also suggested a Brain Pep Scan this week.

We live in Arkansas but are willing to go wherever!

Any ideas would be great!

Hi. You go on the Duke website

http://www.cancer.duke.edu/btc/

Click on Referral Information and click on the Adult Patient Referral Form.

I filled out the form, submitted it and Dr. Henry Friedman called at about 10 PM the next night.  Very short convesation.  Went something like this.

Dr. Friedman:  "Is your husband walking, talking, eating, dressing himself?"

Me:  "Yes."

Dr. Friedman:  "Good.  Steve Silverman will be in touch to get everything scheduled."

Steve was, and my husband has been treated at Duke since July 07.

One thing - you don't pick the doctor you want to see.  They schedule the appointment - it is generally a two day appointment.  One day you see the physcian's assistant and one of the neuro-oncologists.  The other day you meet with one of the nurses, a social worker, a child life specialist, etc.   On our first visit, we saw Dr. James Vredenberg.

I don't think you will find a more knowledgeable group of medical professionals when it comes to brain tumors.  The support offered by the Preston Robert Tisch Brain Tumor Center is excellent.  We are extremely glad we sought help there.

Best of luck to you.

Barb

Husband dx 4/07/07.  Inoperable GBM IV.  Radiation and Temodar did not work.  On Avastin / CPT-11 since July 25, 2007.  One good MRI after another.

Here's a few links to MD Anderson if you'd like to talk to them in addition to Duke.  My husband and I had a consult at MD Anderson at the beginning of this journey (post surgery but pre-treatment).  I had called (on the recommendation of my neurologist) Dr. Alfred Yung about getting an appointment for my husband.  As I waited for the scheduling people to call back, the phone rang, and it was Dr. Yung himself.  We weren't able to see him due to timing, but saw Dr. Pudavalli.  After the consult we chose to stay in Austin for the treatment because at that point, it would have been effectively the same, but I'm happy to know we have the resources of MD Anderson if we need it -- then again, I've heard nothing but good about Duke too.

Here is a link to the patient referral page

https://www2.mdanderson.org/sapp/contact/selfreferral/index.

 Here is a link to Dr. Yung's bio

http://www.mdanderson.org/Departments/Neuro/display.cfm?id=C

Might I suggest checking with Dr. Gerald Linette at the Siteman Cancer Center, Barnes Hospital, St. Louis, Missouri.  They have a fabulous program, and state of the art facilities and treatments, and they have several clinical trials you might be able to look into.  My father sought treatment here after our local hospitals/cancer treatment facilities held no hope.  They had a clinical trial with Avastin/CPT-11 that Dad responded well too.  I know Dr. Linette has other patients he is using this treatment on as well.  Just a suggestion.  Might be closer than Duke.

Also, they have a place there you can stay for low cost....All that info is provided to you when you get there.  They took such great care of us.

Dr.Freidman called tonight but there is a 7 week wait.

What do you think?

Holy Cow!  A 7 week wait?!  What does that tell us?  More people presenting with brain tumors?   Everyone is traveling to Duke?   I think I would see how soon M. D. Anderson would see you.

Best wishes,

Barb