should we go to duke???

my fil was told today that going to duke or md anderson was prob the only thing to try at this point, the cemo drugs just make him sick. his tumor has come back after avastin and new spots  have shown up.. it has spread to other parts of brain..he would have to be off of avastin for 4 wks and hope he gets in a trial,  would 4 or 5 wks be to long when it grows so fast.. we just now got him back after being in a rad. fog. he feels good for now   has anyone been in this spot..they will decide by monday

I think if you do some searching here you'll find posts about Duke not being the only reliable brain cancre hospital in the country. It got a lot of publicity during Ted Kennedy's treatment, but Dr. Freidman, whom I think likes the limelight, only removed 30% of his tumor andthe rest of his treatment was at MGH. As far as chemo, of course it makes him sick. Some are sicker than others.

The so-called Duke protocol is available to all neuroncologists. They do talk to each other. Sounds like your onc is being a bit lazy or negative, or not willing to deal with the truth. Spreading to other parts of the brain is not good. I know many come here to have their hand held, but I like to speak the truth. You ask, I answer with my most heartfelt, knowledgeable opinion. I've been at this for awhile.

What does your FIL want to do? It is ultimately his fight and his decision. Many people here keep things from the patient. I DON'T BELIEVE IN THAT, BUT IT'S YOUR CHOICE. I wish you the peace of knowing, no matter what, you made the right decision.

jackiespools,

There is good reason why both Duke and MD Anderson, and only those two, are named as being the top hospitals for treating brain tumors in the US.  There may be trials that are available only at these institutions, and despite the words of the previous poster, the oncologist probably has good reason for advising treatment at one of these two places.  There is no shame in admitting someone else may be better than he.  If they can afford to travel, what do they have to lose by going to one of them?

My husband was operated on by Dr. Friedman at Duke and is on a clinical trial at Duke. They are amazing there and truly treat their patients with respect and dignity.  The Preston Robert Tisch Brain Tumor Center team consists of wonderful and knowledgeable people. Their intent is to heal -- At Duke There Is  Hope (that is their motto).  In regards to Mary's comment about Dr. Friedman -- he is incredibly humble and has NO ego whatsoever. He is highly skilled and his only goal is to save lives!  We were impressed with his demeanor (we already knew he was the best so didn't care what his personality was going to be like as long as he would do the surgery), warmth and generosity of spirit. He was actually embarrassed when we brought him a gift to thank him for all he had done to save my husband. 

Whatever decision your family comes to, do not second guess yourselves. It can be very easy to beat yourselves up over this and the path you may take.

Thinking of you and hoping that things take a turn for the better.

H

Looks like we're back on the Duke debate again. I think perhaps the Duke-sters should give some thought to how their comments make the rest of us feel--those of us who can't travel there, can't afford to, etc. I am thrilled that so many are receiving excellent treatment there, but there are many of us also receiving excellent treatment and cutting edge clinical trials at other hospitals. There are other fine neuroncologists who are not settling for palliative care only--they're striving for survival. This argument was a thread here a few months ago and many felt the way I do. We patients have enough to keep us awake at night without wondering if we should sell our homes and move our families to North Carolina. Just saying. By the way, I have always been treated with respect and dignity by my medical team. I am family to them and can reach them at a moment's notice.

It might not hurt to give a call to duke or MD anderson, they may be able to take a look at the medical records and give some suggestions.  It may be that they say you are getting exactly what you need where you are, or they may have some ideas that haven't been tried yet.  A second, third, or tenth opinion is never a bad idea.

Hallo, I to get somewhat annoyed with the Duke/MD Anderson debate.....why? Well, because it makes others who aren't going there feel like we aren't doing the best for our loved ones. My husband is at Dana Farber in Boston...which is an AWESOME place to be at! He is on a trial that is being done at MD Anderson as well. We love his NO, he call's Mark all the time, we have made friends with his nurses and his whole medical team! We are a young couple, newly married and the support there is great! Mark wouldn't leave his doctor Norden for anyone :) I'm sure Duke is wonderful, but hey so is Dana Farber. They saved his life. *end rant*         Krista

On Nov 06, 2009 2:13 PM Kristalee wrote:

Hallo, I to get somewhat annoyed with the Duke/MD Anderson debate.....why? Well, because it makes others who aren't going there feel like we aren't doing the best for our loved ones. My husband is at Dana Farber in Boston...which is an AWESOME place to be at! He is on a trial that is being done at MD Anderson as well. We love his NO, he call's Mark all the time, we have made friends with his nurses and his whole medical team! We are a young couple, newly married and the support there is great! Mark wouldn't leave his doctor Norden for anyone :) I'm sure Duke is wonderful, but hey so is Dana Farber. They saved his life. *end rant*         Krista

 

 

Absolutely, Krista!  I only answered the Duke question because we are there and we are blessed to live just 2 hours 20 minutes away (when I drive -- longer when my husband drives there).  No arguments that there are other facilities equipped to care for patients.  Many times the doctors confer with one another and a protocol being done at one center may be used at another.  Boy this did heated, didn't it? Yikes.  We are all on the same team here -- let's get rid of this blasted GBM. 

I hope that Mark continues to do well.  You are a wonderful wife.

H

Husband dx GBM IV 2/09

It's so damn hard to find peace in this journey. Both patients and caregivers are scared to bits. A second opinion, even if bleak, does help us to know that we're doing everything we can. When Andy's wretched double cancer pathology came back, our NO's and RO's here in Maine were immediately in touch with their colleagues all over the country. As long as you're working with someone who has that attitude, the same medicine is available anywhere. That is where I have found a small measure of peace to get me through the days and nights.

Sarah

mom of Andy 27 dx gbm/pnet 1/09

:) I didnt mean to heat things up, just to give people who are unsure of where to go some peace of mind. We can't second guess ourselves, right? As caregivers/patients we have to trust that we are getting the best of care. Like Sarah said, we are already scared. When Dr. Norden came to us with this trial, he said "I'm holding this spot just for you Mark" It was wonderful! We both felt blessed and that Dr. Norden was doing everything he could for Marky. At first I didn't like Dana Farber, it was our second opinion after another Boston hospital. I didn't like Dr. Norden at first either,but I have come to love and trust him.

As to being a good wife.....somedays yes, other days, no. I want to run home to my mom all the time. To face something of this magintude is something people in my age group just cant understand. I know Sarah's Andy can :(. I think of Andy all the time. Mark and I just turned 29, so we understand a little of what Andy feels. Although Marky's tumor is a Oligoastrocytoma 3, not a GBM/PNET. Sarah, let Andy know he isn't alone, people his age are fighting BT's and not to far away since we live in New Hampshire :)

 Hugs to all of you!      krista