GBM and Duke University

denismcd · New User Joined: 09 Jan 2006 Posts: 2

My Father is currently receiving treatment at University of Pennsylvania for GBM in the parietal lobe. He was diagnosed at the beginning of November and has been undergoing radiation (five days\week) and chemotherpy (temodar). He is almost through with the radiation, and he and my Mother are looking at alternatives for second opinions.

In our research, Duke keeps coming up as one of the best places to go. I live in NC, and it would be easy for them to stay with me and visit the doctors there. When they mentioned this to the radiation-oncologist at UPenn, she told them that if they went to Duke that it was unlikely that they would be able to return to Penn for further treatment. She claims that Duke is so "out there" that the treatments often disqualify the patient for further treatment at other facilities.

Like so many other families, we are devastated by this diagnosis and are looking at every available option. We have been very pleased with UPenn, and have no qualms with the treatment he's received.

I would be very interested to hear other's experiences at Duke or other facilities. Is Duke [i]so[/i] experimental as to disqualify patients from other treatments?

Thanks a million.

- D

leo · Contributor Joined: 23 Sep 2004 Posts: 1575

Hello

I am not sure what the physicians meant by it. If he is on a clinical trial, he would not be able to return after receiving treatment to the same trial. Duke has definitely expertise in this area. But I would ask why it would disqualify him for other treatments. It might be clinical trial-related.

best regards,
Dr Leo
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brainman · Posted: Tue Jan 10, 2006 12:56 am Post subject: Re: GBM and Duke University

Hi,

To me, it sounds like your father is receiving a standard course of treatment for a GBM at UPenn. Are you sure that your parents heard the doctor correctly? I have no way of knowing if I am right or not, but they may have gotten the message mixed a little.

If your father has received the standard treatment, that fact alone might disqualify him for investigative studies at Duke or anywhere else. Unfortunately for your father and me, a lot of those studies look for patients who have never received chemo or radiation.

I would suggest that your parents get clarification from your father’s doctor.
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denismcd · New User Joined: 09 Jan 2006 Posts: 2

He is receiving the standard course of treatement. I got some clarification from my Mom (my Dad can be sort of fuzzy, particularly at the end of the day). It was, in fact, the oncology nurse who made the claims and not the doctor. She was quite clear, evidently, that outcomes at Duke are not good.

My folks have a phone consultation with one of the doctors from Duke. They are curious with regards to the next steps. There are nine radiation sessions left, and they don't want to feel as though they are waiting around for recurrance. They are looking to be as proactive as possible and consider the consultation with Duke a second opinion of sorts.

brainman · Posted: Thu Jan 12, 2006 2:16 am Post subject: Re: GBM and Duke University

[quote="denismcd"]My folks have a phone consultation with one of the doctors from Duke. They are curious with regards to the next steps. There are nine radiation sessions left, and they don't want to feel as though they are waiting around for recurrance. They are looking to be as proactive as possible and consider the consultation with Duke a second opinion of sorts.[/quote]

1. Make a list of questions. It is easy to forget what you wanted to ask when the almighty doctor calls.
2. Know what type and grade of cancer he has. The more details you know, the better your consultation will be.

Those are important thing to know prior to a consultation.

I do not know what to make of the comment that "outcomes at Duke are not good." Duke is one of the leading research institutions in the country. Because they do a lot of research, a lot of their patients are "worse case scenario" patients... patients whose condition is so bad that the likelihood of death is higher anyhow. That might be where she is getting the impression the outcomes are not good.

During the last 13 years, I was not just sitting around waiting for the cancer to recurre. Oh, I guess there in the beginning and, occasionally, I would feel my head and ask myself: "Are you all behaving up there?" But most of the time, I was LIVING. And that is all that really mattered.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54
FaceBook: http://www.facebook.com/James.Hawking54?ref=profile

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