re: I've been diagnosed with glioblastoma

Prayers sent.

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guedeaux

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My sister was diagnosed with stage 4 Glio almost four years ago. They did two surgeries and she had chemo plus focused radiation. They told us she has six months to live.

Well, she's still around. She can no longer work as an attorney but she can drive, has not had any siezures and is on very minimal pain meds. She lives in an assisted living place but we asked her to do this so she would socialize more. It's really helped a lot. She was diagnosed in her early 40's so my understanding is that the earlier the better.

She went to MD Anderson for the last year and a half. They monitored her tumor and never saw any growth. Her neuro-oncologist is only seeing her every 6 months now.

With the incredible things that you guys do (like using the tumor itself to develop a treatment against it) there's no telling how long she'll last or how long the OP will last.

To OP: I will pray for you man. You sound young. FIGHT! Do not give up no matter what anyone says. You have a chance to beat this so take it!

May God bless you, your family, and your friends.

Will keep you in my prayers!

Pardon the long post but your situation hits a little close to home for me. I even debated about posting, because I don’t want this to be taken the wrong way. But, I’m posting anyway with the hope that it’s taken as intended: just some food for thought. It took me a while to type it, so some of this may be repetitive to what others have already suggested.

1. The GBM is trying to kill your body. Don’t let it kill your soul. Live your life and refuse to let it defeat you emotionally.

2. Your family and friends love you and will do anything they can to help you. Don’t be too proud to lean on them when you need to.

3. As someone else posted, find a neuro-oncologist, not just the local oncologist in your yellow pages. This means, depending upon where you live, you must be willing to travel if necessary. Make contact with one (or more) of the national cancer centers, like MD Anderson, Sloan Kettering, UCLA, etc. If you can, go there. There are many, fairly renowned doctors around the country researching and treating GBM in a variety of ways. Baybeefeetz mentioned someone at UM. There was a guy at Duke a few years ago—His name eludes me. Find someone somewhere who’s willing to fight as hard as you are. DO THIS AS SOON AS POSSIBLE, LIKE YESTERDAY.

4. No offense to the many doctors who post on here, but many in their profession have egos and don’t want to be second-guessed nor work as part of a collaborative team focused on you and your diagnosis. If you meet doctors like that, run away as fast as you can. Ask questions, lots of them. Be a pain in the doctors’ asses. You have to make them pay attention to you and, oh the horror, maybe even think “outside the box” a little.

5. Is your GBM operable? If so, ask about an awake craniotomy—It might be an option depending upon the location of the tumor. As someone else posted, look into the radiation “seeds” that are implanted when they cut the tumor out, as well as Avastin. The FDA approved “gold standard” of care, at least a few years ago, was temozolomide (TMZ) and radiation. If that’s the first thing out of the doctor’s mouth, see 4. Don’t settle for just that. The FDA doesn’t give a shite about you. Research all the other options out there. See 4.

6. Ask your doctor about his willingness to approach your treatment with a drug cocktail. There are several drugs approved by the FDA for brain cancer treatment. And, doctors can write off-label scripts for others (tamoxifen, etc.). These drugs have different modes of attack on cancerous cells. Why not try to attack it from multiple angles? The problem with brain cancer is getting the drugs into the brain (across the blood brain barrier). See 4.

7. What’s your age? Unfortunately, you can’t do anything about it, but it matters, not only to the GBM but, sadly, to your doctors.

8. Research places that do genetic testing. There was a study several years ago about a specific gene (MGMT) in GBM patients. The presence or absence of MGMT (I can't remember which) rendered TMZ useless, or at least much less effective in something like 60~70% of patients (I’m probably fudging the terminology and the number, but it was a statistically significant result). But, rather than spend the money and effort for a test that might show you should go straight to Avastin or something else, the FDA, many doctors, and by proxy your insurance company, would rather you waste money and time you don’t have on TMZ. Incredibly, that's the state of modern medicine.

9. Go to clinicaltrials.gov and search any possible trials that are available to you. Don’t restrict your search by geography, or anything other than your disease. Be willing to travel if you need to. And, even if you’re not a perfect fit for a certain trial, your doctor may be able to get you in. Look into immunotherapy and genetic based trials and the Novo TTF. The latter showed some promise in early phase 1/2 trials. The downside to trials is they limit your treatment to that particular regimen. The multifaceted approach that I keep alluding to here isn’t possible. And, you never know if you're getting the placebo. Just do some research and see what you can find.

10. Look into supplements like antioxidants and immune system boosters (coriolus versicolor (mushroom), green tea, high-dose vitamin C, etc.). They may not do anything, but then again they might. And, in the grand scheme of things, it’s not a ton of money. Your doctor will likely turn up his nose if you ask about them, but then ask him what his success rate is with whatever treatment he’s promoting. They’re all about the studies to promote the limited efficacies of traditional treatments but can’t point to a single study to prove that these “alternatives” will inhibit chemo. And, I’m not a “holistic guy.” See 4.

11. As fish said, eat, even when you don’t feel like it. Eat. That’s one of the big sellers of TMZ is that it’s more easily tolerated than other chemo drugs. So, if you're on it, take advantage of that and to the extent you can, feed your body.

Thoughts and prayers.

Bump. Guess it's time for everyone you know to help with some homework. I wish you nothing but the best. There has been some really valuable advice given already.

man, I thought about this all day today...just wanted you to know that...

Don't give up. We had a patient that had this. I know there are some aggressive treatments in DFW.

Cancer took my grandmother's life in 2011. MD Anderson saved my mom's life in 2012-13. Now, MDA is treating a friend's sister that's just 22. She has a rare form of ovarian cancer (approx 20 cases in the country), and although she's had multiple surgeries/rounds of treatment, she's anything but out of the woods. She's been through a lot, but her faith in God and positive outlook on life has really helped her family and support group stay positive throughout. There's going to be tough moments for you, but as you mentioned, cancer and other life-threatening diseases can often be harder on the family. Try to stay positive for you and your family's peace of mind.

I don't really have a point, but I felt compelled to post. Cancer is a terrible thing for anyone to go through, but you're not alone. Good luck to you.