Hi. I'm a regular here but posting anonymously for privacy reasons. I was diagnosed with Stage 3e Non-Hodgkins Lymphoma earlier this year (about 12 weeks ago). I had to climb a very steep learning curve very quickly and start treatment asap because it's a fast moving disease and early treatment is key. (In my case)

I don't know much about GBM, but I wanted to give you some general advice. My first oncologist seemed great, but my wife pointed out that he was 'interviewing for the job' and there is no reason to not find the best available doc. So I googled like crazy, found a few great lymphoma clinics and settled on Mass General in Boston after chatting to them on the phone. I flew out there (6 hour flight) and spent a week getting a second opinion including PET/CT scan. It was so very very worth it. From the amazing doc there I got a referral to a world-class local clinic and well known oncologist in my local town and started treatment within a week.

So I'd encourage you to A) Move quickly, especially if it's aggressive and B) Get a second opinion to make sure you get the best treatment available.

It's actually difficult to do both. But what I found is that the first oncologist I worked with was actually not moving as fast as he could have. The local hospital had about a 9 day wait time for my initial PET/CT scan and my doctor could have scheduled it a day or two earlier but he just didn't get around to it. By flying out to Mass General I got my scan earlier because there's less of a wait and I got a doctor and team who move very very quickly.

With what I have (DLBCL Non-hodgkins Lymphoma), there are various genetic subtypes and tons of literature. I had my pathology sample sent to mass general for further DNA level analysis and ended up with a ton of literature and the doc was happy to have conversations as technical as I would like. What I realized is that I don't have the background to understand much of the literature. (I'm smart, but not in medicine) Also the percentages you deal with when you read about outcomes become meaningless because the studies are done on groups and every individual case is different. So what seems to be the best approach is to get access to the best minds in the business and have them guide you on diagnosis, interpreting results and treatment. I have now worked with three oncologists and two of them have been incredible and are world-class in their field. That seems to be working out quite well.

I would also add that it's not just about finding a great doctor. It's important to find a great team. That means: admissions nurse, scheduler (very important because with some treatments it's critical you don't miss a dose or schedule), other nurses who administer treatment and so on. The team at Mass General Lymphoma clinic is amazing. If you're reading this and do have lymphoma, get in touch with 'Mutsi' the admissions nurse, and try to get scheduled with Dr Effi Hochberg who is an amazing amazing guy and affiliated with Harvard Medical School. I'd hope that your friend can find a similar clinic that has a great team and doctor and is really great at treating GBM.

Some further unsolicited and anecdotal comments that might help your friend:

I've just finished my third cycle of R-CHOP (my particular flavor of chemo), feeling great and looks like I might actually beat this thing. Getting a CT scan in about 3 weeks to find out more.

I've kept this whole thing private except for a small group of about 15 very close friends and relatives who know. They have been incredibly supportive and what has really helped me is just talking to my friends in person or on the phone. I'm generally a very positive and energetic person and I seem to be offering them more life advice than them giving me support, but just talking about anything, whether related to the disease or just unrelated stuff, it REALLY helps keep me energized and positive and generally happy. So I'd encourage you to make yourself available without being overbearing and suggest your friend connects with those close to them and stays in touch. What I've done is send out an update every 3 to 6 weeks to my core group just letting them know how I'm doing etc and that leads to further conversations.

Also I've managed to keep mountain biking and running during chemo which is a little unusual, but it's kept me sane. Some advice I got was to not 'stop everything' while dealing with this. I don't know what your friend's physical situation is but if they can keep their life as normal and ongoing as possible it will (in my experience) keep them much more positive and energized and generally happy. Symptoms vary so much and I know this from my treatment facility and seeing the huge spectrum of physical conditions as people go through treatment - so totally understand this may not be possible. But if it is I'd encourage it.

Getting a diagnosis like this is crazy. You actually have to develop a sense of humor about it I think because it's just one of those things that is supposed to happen to other people. Not you. I think everyone has their own way of dealing with it, but for me what has worked is to have a bit of a sense of humor about it and then to focus on the problem aggressively and stay positive.

Best of luck to you and your friend.