Good Experiences In Nc/Duke?

Hi,

My mother was just diagnosed with Glioblastoma Stage IV. She is currently recovering post-surgery (about a week out) and goes to Duke to consult with Dr. Friedman's team on Mon/Tues.

I have been visiting her in NC for about a week, as I am a PA-C in cardiac surgery in Boston, and unfortunately, cannot be here for the treatment course. She lives with my aunt, and will have one of my 5 brothers/sisters around to help out.

Right now, she has word-finding/speaking difficulty, and trouble reading/comprehending. She is sometimes confused, but usually right there with you.

She is the sweetest, most beautiful person I have ever known.

My question is if people have had a good experience with treatment in NC, and if so, what was the treatment course? Were any people in one of the trials with Dr. Friedman?

Right now, my mother can take care of herself, save for insulin dosing, and scheduling appointments, driving, etc. I am wondering what to expect, and anyone has any good ideas for the future.

If necessary, I will transfer her up to Boston, and take care of her with the help of her brother who lives close, and my brothers/sisters.

I am very scared, and we will do all that we can to beat this-so far, I am told that we will not use the cyberknife, and that there are two lesions, one of which was debulked in the initial surgery/biopsy. She is taking only Dexamethasone now, with chemo (Temodar) and radiation planned, in addition to any trials that are discussed next week.

Thanks in advance

Chris

Hi Chris:
I am truly so sorry to hear about your mother. I will remember both of you in my prayers.

I have lived in NC all of my life. I'm 54.

Duke's reputation is sterling! I do not know Dr. Friedman, but I have been treated my several Duke doctors. All were eminently qualified, thorough, and professional.

Duke has a website that you can use to create a username, keep up with appointments, send & receive messages, medicines, etc.
http://www.dukehealth.org/static/patient_channel/

You can also login as a guest just to see what is available on the website.

Other DUKE websites you might find useful:
http://www.duke.org


http://www.dukehealth.org/physicians/D7A9925C7B1E813E85256DF

http://www.dukehealth.org/physicians/65AB8B0EC98FE63F85256DF

http://www.duke.edu/medical.html

http://www.dukemednews.duke.edu/av/medminute.php?id=3858


http://www.dukemednews.duke.edu/av/medminute.php?id=2265

One thing I will have to say that is truly marvelous about Duke doctors is their level of committment to their patients. Every time I was seen by a doctor at Duke, when I got home, if I had a question, concern, complaint......whatever, all I had to do was call Duke. They would page the doctor and he would speak to me. It was that simple. (No, I don't mean he would call back. They came to the phone right then, almost always.)

I don't know if any of this will help you.
Again,
Hugs & Prayers,
Gloria

My mother goes in on Monday-unfortunately, I am back in Boston as of tonight (Sunday).

She lives about 4 hours from Duke, so will stay in the area overnight, with my sister and aunt.

I thank you for your prayers!

She is only 63, and has a lot of work yet to do, like raise my kids (when I have them)!

I hope and pray that I can give a happy story here soon enough

Chris

Hi Chris,

I'm so sorry to hear about your mom. My 33 y/o husband was dx in 12/05 with an AA III in the brain stem. You talk about devastating. We have a two year old daughter and my husband was given 2-10 years.

So, what I can share with you about Duke is this. We got 4 opinions - U of M, Mayo, Duke and UCLA. They all 4 prescribed the same course of treatment for him which was chemo and radiatiion as his tumor is inoperable. Duke is rated in the top 10 in the nation so you simply can't go wrong by sending her there. They are world renowned. They are the top specialists in their field. We went to UCLA and had great success there with a 60% reduction in the tumor.

Best of luck to you and your mom. You're in my prayers.

Mary

Just got word that Mom was accepted to a trial at Duke (actually, she will get the medication close to home in Waynesville, NC) using CPT11 and Temodar. No radiation for now.

The clinicians at Duke described it as "2+2=6," in that the combination of CPT11/Temodar seems to be much greater than the parts. I hope that it is as effective as they hope.

They even mentioned the word "cure," which is, obviously, a very strong word. Here's hoping that it proves to be a valid claim.

I am so sorry to hear about others in this situation-it is a horrible disease, that robs us of our loved ones while they are right in front of us.

I am having a lot of trouble accepting this.

I am recently engaged, and am considering moving the wedding date up, so that she might attend. No guarantees either way, though

take care

Chris

Hello Chris,

I went through the same thing myself about 8 months ago. Had the surgery at Columbia Presb in New York (Dr. Micheal Sisti) I then followed up with the 30 daily radiation treatments & Temodar at the same time. The radiation was tough at the end, so if it is not necessary that would be great. I am convinced that my long term "effects" are more from the radiation than the actual tumor.

I moved on to Temodar & CPT11 for a month and then got involved in a trial from Sloan Kettering with CPR11 and a drug called Avastan (it is not approved by the FDA) but I have had great results from this combination.

I hear only GOOD things about Dr. Friedman at Duke, so it seems like you are good hands. There is no ONE way to fight this battle. We all respond differently. It is very had, but continue to have faith and enjoy each day that you can with your mother. God works in strange ways!

I am a 44 year old runner that was blindsided by this. I have a wife and three children and was told I had 6 to 12 months to live. That was last August and I am doing really well. So there is hope. You and your mother will be in my prayers.

Good luck,

Mark

Mark,

I went to med school in NYC, so am familiar with Sloan Kettering. In fact, my cousin is there now, getting treatment for metastatic renal cell cancer.

Please keep me updated as to how you are doing-i hope very well!

Incidentally, I plan to run a marathon in the fall-it is one of the few things lighting these dark days.

Mom has had the first 2 days of treatment-so far, no nausea, however, I know that she probably won't have any of this for a week or so, if she is to have it. I hope not-she is a difficult to control diabetic anyway, although we have been managing quite well.

In med school, we always heard, "only nice people get cancer." I think I believe this

Chris

Hi my name is sarah, i'm 32 & live in ohio. I have been going to duke since nov. 2004. I also have dr. Friedman's team treating me - & i'm still here!! I had a grade iii anaplastic astrocytoma which is just one level below what your mother is dealing with. But with all the treatments, i now have a low grade ii tumor.
I could go on & on & would love to talk to you on the phone, it's so much easier than typing.
My # is --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----. Please call! Oh, & yes, i was on trials. I think duke is the best place she could be. Sarah