One patient with glioblastoma still alive nine years later
by maries830 on Fri Jul 01, 2011 08:19 PM
I am appalled at the way you were treated by Dr Friedman. I guess that some physicians think that they are god. My husband was treated at Jefferson Hospital in Philadelphia. We were happy with his treatment. However, when he had a regrowth, we opted for s second opinion. Originally, we were going to go to Duke, but, at the suggestion of the NO at Jefferson, we went to NIH (National Institute of Health) in Bethesda, Md. Dr Fine is the head of the Neuro Oncology Branch. They are wonderful and have access to many clinical trials. The best part is the this is all part of the federal government. All of the information can be found on their website. They will get back to you immediately and you will be treated respectfully. Good luck and god bless your family
by passionfish on Fri Jul 01, 2011 11:52 PM
My sister was healing from her second craniotomy (in less than 3 1/2 months) and was waiting for Avastin treatment to begin...She started to rapidly decline,,she was dying in front of our eyes...I went on line and emailed Dr. Friedman, wondering why there was such a delay in starting the Avastin. They do have to wait a certain amount of time because of the bleeding issue with Avastin. This was way past the date she should have started however. Turns out her NO was on vacation.
My phone rang the next morning and the caller was Dr Friedman...after getting over the shock that a renowned surgeon was actually on the phone, I quickly described my sisters situation and asked for his advice...Without hesitation, he told me that my sisters chances of living for longer than 6 weeks was a foregone conclusion and we should not worry about starting the Avastin.. I sputtered a weak thank you and he hung up...It was horrifying and I was sooo angry.... # 1, I think it`s really odd that he calls people...# 2, This is not the first time that I have replied to someone about his wierd phone call...#3, My sister did indeed pass away less than 6 weeks later.. So maybe he really is trying a more personal approach and has good intentions...Either way it remains as just another freaky thing about the equally freaky diagnosis and death of my dear sister..
Peace to you guys, Adonna, sister of Marilyn dx GBM 7/27/09 died 12/21/09
by Gbm_Wife on Sat Jul 02, 2011 04:53 AM
I still remember my phone call with him. First of all he called me from a restaurant. I could hear all the restaurant noise in the backround. I wasn't 100% sure if he really knew my husband's case I forgot what he said that made me think that.Anythi ng I said to him, he cut me short and said Your husband is a dead man. Over and over he said that to me. Seven years later I can still hear it in my mind. He said it so deadpan to me. I was so upset when I hung up the phone with him. Needless to say we never went to Duke. My husband is a 7 1/2 year GBM survivor and hasn't had any treatment in 4 years. I believe every instiution has a small amount of long term survivors. Duke probably has more because they see more patients.
by Katherine62 on Sat Jul 02, 2011 05:33 AM
Whoa....were you aware that there are TWO Dr. Friedman's working at Duke University and both work in the brain cancer center!
Dr. Allan Friedman
Dr. Henry Friedman
I wonder which doctor it was you spoke to and if the other posters also talked to the same one.
On a side note: I was very disappointed with my recent Mayo Clinic visit. Don't get me wrong - the place is beautiful and most of the staff were pleasant. I was just very disappointed that they didn't have much to offer, the GI doc I met with was focused on only one of my medical issues. You hear "Mayo Clinic" and think that you will be meeting with docs that are passioate and will leave no stone unturned.
If interested in my Mayo Clinic visit, I posted a series on my visit there.
by TrustinginGod on Sat Jul 02, 2011 05:52 AM
I am so glad I am reading these post, we are possibly moving to the Carolina area in a couple of years. I thought Duke was a good hospital for brain tumor treatment, now I don't know. Has anyone had any bad experiences at the Cleveland Clinic. You know when you have never experienced anything like this, all you know is what the doctor tells you. I am so glad we didn't get a doctor like him. I know why we didn't, it's because God doesn't put any more on you than you can bear and I would not have been able to bear a doctor like that!!!
by rosegamel on Sat Jul 02, 2011 06:51 AM
Im not sure which Dr. Friedman it was that I spoke to. I dont really care at this point either..lol. He was rude and unprofessional. I think all of us can agree that if we find a really terrific doctor that has a not-so-great- bedside manner, it can be overlooked if they are your "ace in the hole". Problem is, he's not. Nobody is from what I can tell. I think if you've got a compassionate doctor that is ready to go to bat for you and sometimes veer off the beaten path, then you are a step ahead of the game already. This is a real crap disease that has shown very little progress over the years. They just cant seem to figure out how to beat this thing. In addition to that, the ones that are LTS (long-term survivors), they cant figure out why and Im sure that applies to a lot of other cancers as well. ITs frustrating to be in the situation that we all are in. I just want my husband to live. This is 21st century cancer. In the 1800's pernicious anemia was the "cancer" of that time. Now it is treatable. In the 1900s scurvy was the "cancer" of that time. Completely curable now. It would be great if there was an easy fix to this cancer. MAybe that will happen one day, and for all of our sakes, I hope it happens soon. It is hearbreaking to read about all the loved ones that have been lost on here. Heartbreaking and very very surreal.
by karynk on Sat Jul 02, 2011 01:00 PM
Thank goodness there is more than one Brain tumor center and brain tumor specialists in this world. I believe that the problem with large medical centers is that you become a number/statistic. I really believe that every employee at a BT center should go through some sort of compassion training for dealing with such things. I have felt for many years that my husband was his NO's pet guinea pig. His tumor is rare, not a GBM, and it was as if they didn't know what to do with it. And to answer the above poster - this was at the Cleveland Clinic.
We have been told not once, but 3 times now that my husband would be gone in less than a year. Yesterday we celebrated our "one year" post hospice referral, that his ex- NO gave his 2-6 months time frame.
by luckywife on Sat Jul 02, 2011 02:54 PM
Let me first say that I am so sorry to hear that you had a bad, well terrible, phone experience with Dr. Friedman. I am certain that you spoke with Henry Friedman (heavy NY accent?) as he runs the Preston Robert Tisch Brain Tumor Center at Duke. Allen Friedman is the rock star surgeon. I have heard other similar stories about phone calls with Henry but have also heard stories of hope and compassion. I wish your call had been the latter. For those who are considering Duke (especially the family moving to the Carolinas -- I live in Charlotte), I will tell you that it was an amazing and caring place for my husband and me. We are not part of an elite group and I promise you that you do not need to be famous and wealthy to be treated well by the staff at the BTC and hospital. I saw many bt patients from varied socioeconomic levels and ALL were treated with respect and warmth. Duke's motto is "At Duke there is Hope" so I am always saddened and surprised when someone shares their not so hopeful experience. The doctors at the BTC have one goal and that is too prolong life and one day find a cure for this insidious disease. If your experience is not good with Henry Friedman, I recommend trying Dr. Sampson (one of the head researchers who has come up with some very successful treatment options/vaccines), Dr. Vredenburgh, Dr. Peters or Dr. Desjardins -- all wonderful NOs at Duke. Our NO was David Reardon -- a kind, gentle and learned man. He has since left Duke (I believe) to go to Boston -- not sure where but if you are in that area, I recommend trying to find him. He is brilliant. So, that was my two cents on Duke. Sadly, my husband passed away in December after a valiant 22 month fight against beast. We were both very happy with the care he received at Duke. But yes, thankfully, there are other wonderful BTC's out there. Cleveland Clinic, MD Anderson just to name a couple.
Hang in there -- the beast can't win everytime and somebody is going to be a longterm survivor so it might as well be one your loved ones :-).
by mafaldas on Sat Jul 02, 2011 08:56 PM
I am also sorry your interaction with Dr. Friedman was not positive. I did want to chime in his defense, however. He spoke to me twice about my mom's case. For free. I have never had a doctor consult for me without a fee, and certainly not such a doctor of suh caliber.
As for his bluntness about your husband's prognosis with GBM, I am sorry that he did not handle the situation with more tact. But, I think Dr. Friedman has strong reasons for promoting Avastin as the first line of defense. This is not done for a lot of patients, including my mother. Dr. Friedman told me twice to combine Avastin with Temodar. And, my mother's oncologists said that we shouldn't, that we should keep a second weapon at our disposal. Their logic felt reassuring. I wanted to have something else to throw at GBM when Temodar failed. It feels better to have two lines of defense than one...
But, I understood Dr. Friedman's logic when it was too late. In some cases, starting Avastin (with Temodar) immediately might help delay progression ( http://jco.ascopubs.org/content/early/2010/12/02/JCO.2010.30 ). If that is the case, there is a also a good chance Avastin might help the patient have a better quality of life. And, in cases like my mom's, which do not respond to Avastin, we would have known early on Avastin would not work for her. It would have spared us the agony we lived when deciding on her third surgery.
But, you have to find the doctors you are comfortable with. I know I hated my mom's doctors, so I can certainly understand why you would be upset at this negative initial interaction. It is much better for everyone when the doctors and the family are on the same page in terms of treatment and bedside manner. Good luck!
by dmitry on Sun Jul 03, 2011 12:37 AM
These doctors get paid to be professional and show compassion, but they're human too, and part of it is their seeing the hopefulness of the patients and their families but knowing the sad reality of virtually 100% failure as far as any cure is concerned. The upbeat doctors with the sweet sounding words can often cheerlead patients onto a treadmill of, what in the end are, hopeless and debilitating treatments. The seemingly "mean sounding" doctors are usually just cutting to the chase and providing a reality check.
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