My 32 Year Old Brother Was Newly Diagnosed (Glioblastoma Stage IV

My brother (who is only 32,) was diagnosed w a tumor a little over 2 weeks ago. He had been having headaches and slightly blurred vision for a month or two. He is a new father to a beautiful 3 month old baby girl and loving husband. He went in fo a routine eye exam. Immediately his eye doctor noticed something was not "right." He was referred to a specialist who only days later informed him he had a tumor. Within less than a week he was scheduled for surgery. Initially when meeting w the surgeon while my brother was in the recovery room/ICU, we were told it looked like Oligodendroglioma and that he would hava a long road ahead. I sensed during this conversation there was "more" going on, however since we were told by the surgeon that he believed he removed 95.9% of the tumor, we carefully just "took it all in." We would then have to wait to find out which grade it was. Now, when meeting to be fitted to prepare for radiation another meeting was scheduled where his diagnosis was changed to glioblastoma, stage IV. We are all so overwhelmed. Not to mention, we were told they initially thought 95.9% was removed, when in reality only 30% was. Seems every bit of info that shared w our family initially was way off base. The surgeons at Froedert Hospital in Milwaukee have agreed to meet with him to discuss the possibility of removing more of the tumor w a second surgery. He had surgery in GB initially, however it seems the Froedert team thinks more could possibly be removed. We are trying to stay strong...I would appreciate any thoughts, encouraging words or info. Just feeling so overwhelmed as a whole. Thank you. Blessings.

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I can't really give you any information - our family is going thru a similar situation - it's devastating news. I"ll pray for you and your family. Best

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You might want to try John Hopkins, they are ranked number ine in the nation for their Dept o Neurosurgery. 1-410 -516- 6234

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Sorry to read about the diagnosis. My wife was diagnosed in 2003 when our kids were 4, 4 and 2. Without ever learning how, I got a call from a complete stranger who lives three states away. Her husband had also been diagnosed with a GBM earlier that year, had one surgery, and after some complications went for a second opinion, and was told they needed a second more-complete surgery immediately. Two surgeries within several months. By the time I spoke with her, her husband was doing much better and had started the return to work. The message was if you want the best shot at longevity, get an aggressive surgeon who was willing to risk disability and deficits to get more of the tumor. For us it was the best advice we ever received. After interviewing several surgeons (Duke, Mayo, and MGH), we settled on MGH and a very blunt surgeon (he is now at Brown in RI) who, important to us, operated on brain tumors several times a week which was my other criteria - somebody who does this all the time. After that first agressive surgery, and several years, my wife completely recovered. We had a great run until last December when it reappeared. But we took the same approach and went to a center that was running a surgical trial using flouresent imaging of malignant tissue. http://www.ncbi.nlm.nih.gov/pubmed/19240573. This enabled them to be agressive without creating more disability than necessary. It has been very successful so far. My wife has limited mobility on her left side, but she attends sporting events, spends time with the kids, and last night we went out to dinner with friends. These are very tough calls, and every person has to decide what they can live with. The threats to my wife were speech and mobility, and she decided she could risk that and maintain a meaningful relationship with the children. But she is mentally and emotionally very durable, and I don't think everyone could make or should make the same decisions, but it has worked for us. The kids are now 13, 13 and 11, and will never forget her, or everything she did to stay with them. And there is no giving up yet. If there is going to be a second surgery, make sure he gets a functional MRI, and 5-ALA if you can. Good luck.

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So sorry to hear about your brother. Regarding a second surgery ask your doctors if your brother can enter a clinical trial or go to Australia or europe to do a gliolan assisted surgery which aids the surgeon in taking out as much as the tumor as possible. Here is some info: http://www.btaa.org.au/GliolanFAQ.html..

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I just noticed that Snowcialist has offered the same information. I would highly suggest you look into it.

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Thank you for all of your thoughts, prayers and of course suggestions/opinions. It means more than you know. As mentioned in my initial post, all of this is so fresh. I feel like the only way I can help is through staying educated and just being there for him and his wife and daughter.

My brother will be seeing surgeons at Froedert Hospital in Milwaukee on Wednesday. I will be forwarding these replies to my sister who will be traveling with them that day. Your replies are very helpful and much appreciated. I will keep all of you posted.

We do not know what they will tell him while at Froedert, however knowledge is power, and he has a very powerful team in his friends and family. Thank you.

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I know this is a difficult and scary time. My husband was dx with Grade 4 GBM in March. Since you are in (or near) Wisconsin, you may want to consider the University of Wisconsin Hospital & Clinics Cancer Center in Madison. They have on-going Clinical trials for GBM patients and are involved in some cutting edge research as I write this. My husband is receiving treatment at UWHC and we are very pleased with his treatment and physicians.

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I highly recommend Mayo in Rochester, MN. I was awake for my surgery and other than seizure meds I have no deficits at this point.

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Sorry to hear about your Brother in law. I'm not really an expert since I was newly diagnosed in April of this year; however, I felt confident once my Neurosurgeon who is well known in NY told my family and I that she had been following other patients with Oligo Brain Tumors for over 20 years successfully. I also was informed that, although brain tumors are unpredictable, some patients go without a reoccurance for several years and that life should be lived to the fullest and when a reoccurrance rears it's ugly head, we go for treatment. Perhaps that's enough for me to keep me going, I have 5 small children and I'm 38, so I want to be around and I keep that thought close to my heart. I was also told by my surgeon that microscopic pieces remain and they also hope these shrivel up and if they dont then radiation and chemo are used. If you are NOT comfortable with the first surgeon, I would definitly get another opinion or two before making a committment to a second surgery so soon and go with who you feel is the "right" one for you. It's a lot to take in, I totally can relate, and it's a "condition" that needs treatment for the rest of our life so why not find a doctor that you gel with. I will keep you in my thoughts, hope all works out.

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Update: This week my brother traveled to Froedert Hospital. He was told that there will be no second surgery. We were looking for a second opinion which lead us there (complete w an all out fit by his surgeon when he learned my brother had an appointment scheduled at Froedert...but that is a whole different story.) He learned this initial diagnosis was Oligidendroglioma, however after tests came back it was actually Glioblastoma Sage IV. While at Froedert a wonderful Dr. met with him (and he was not even in her schedule that day...she offered to put him in her schedule.) If I recall...my sis said her name was Dr. Connelly. She has suggesed a clinical trial ...but he needs to qualify. I pray he qualifies, especially knowing the surgeons will not be doing a second surgery. Either way Dr. Connely has offered to work w my brother, and he seems to be fond of her, as compared to his experience w/ his initial surgeon who after his "fit" in front of my brother, in my opinion, should be repromanded for his behavior. Good surgeons need good people skills.

Anyhow, I would love to hear more about others experiences w clinical trials...I do not know which they are suggesting for him...but I believe it is stem cell.

Any experiences w others would be greatly appreciated. It has been less than 4 weeks since his diagnosis and surgery. Still so v fresh.

Blessing from WI.

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There are several in here that I have read that do the clinical trials. I only know what I have read,but the new vaccine is supposed to be very promising. Call the Cancer Centers of America, Duke, John Hopkins, MD Anderson,any of the bigger hospitals,and get info. Also ,lots of info on the internet. Do not wait to long,ask again from someone in here that is on the clinical trials. Kathy, Toms wife

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Hi, I suggest you contact the America Cancer Association http://www.cancer.org/Treatment/FindingandPayingforTreatment/FindingTreatme ntCenters/index
and expose your case. they should be able to guide you through what clinical trial best fits your brother. then you can compare notes with your brother's oncologist. I've heard they are very helpful. As far as the vaccine, I'm afraid your brother is not eligible for the most popular one-the DCVAX because he has already had surgery. There are many variables involved to be accepted in a clinical trial and a team work between you and your oncologist is the fastest way to achieve your goal. In any case a clinical trial is always the best option to approach Glioblastoma IV . The standard cure will only prolong life by a few months and sometimes at high costs in quality of life. A trial that perhaps includes the standard care and the new drug, vaccine, etc will give you more options.

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One trial that I found very interesting is this one http://www.wakehealth.edu/Clinical-Trials/A-Study-of-ICT-107-Immunotherapy- in-Glioblastoma-Multiforme-(GBM).htm?LangType=1033
your brother needs to have a certain variable in his white cells in order to qualify. If he does the results are quite incredible. Call them.

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First I'm sorry and you all will be in my prayers. My name is Tammy I found put I had a brain tumor in July a week later had surgery an a shunt put in they also told me they got most of it but they didn't an.now getting ready for 2 more surgeries I m also a moma.of.2young.babys I know its hard with all the what IF's in yours an your brothers mind but find hope an faith an hug an kiss that baby so much cuz he will find the strength to fight an

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Hi Snowcialist, can you let me know which hospitals in the US use the fluorescent based imaging for surgery? My wife's tumor recurred - we are looking at a second surgery. We are settling down on Cedar Sinai due to a clinical trial they have.

Regards,
Ravi

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Hi there, two immuno based trials you can qualify for even after surgery are: CDX-110 vaccine trial which is open at several centers and ICT-107.

Regards,
Ravi

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Ravi,

I really don't know the other the locations, but I understand it has been expanding. Dartmouth in NH was where they did the initial trial and has been doing it the longest, but at this point I would be surprised if they had the greatest number of cases, but they could. I believe my wife's surgeon said that NIH in DC was participating. Googling around makes it appear that the University of Washington, University of Chicago, Southern Illinois University, and maybe University Hospital in Cleveland, OH. I don't know if there were any in CA. Best of luck. My wife is doing well with some deficits 10 mos following her second surgery, so there is hope. And we are coming up on a year from diagnosis of the recurrence.

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sorry to hear the news but in the course of this disease you will often be given wrong or conflicting information by the doctors. You must learn to be constantly vigilant and to question everything. Keep records and pay attention to what's happening at all times. Sometimes you have to make decisions over quality of life versus quantity of life but you are new so this will come later for you-hopefully. He's young so that gives him a better chance at making it for a while. Everyone is different. I suggest you read the site "GBM 4 related" and that may give you some additional info. There is alot to see on different treatment options and care taking. There are very real situations there and wonderful insights to how people handled different situations. I hope you find something there that will help you. I wish your family great strength. You will need all of it and endless prayers as you walk this treacherous road. Many of us have traveled it.Some have lost and some are still weaving thru the twists and turns. keep your eyes open and always try to be prepared the best you can. Help him as much as you can. He's afraid and you can help with his fears. There are some great positive stories but most are not so lucky. GBM 4 is very cruel and most of the time shows no mercy. Try all you can and learn as much as you can, then when the day comes you must make some hard decisions you will know which way to go. until then my prayers and good wishes for success are with you.

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