GBM or Brain Tumors

KaitlinKaitlin Community Member
Hi,
I'm new here. I'm looking to connect with people who have GBM.

The first time I had a grade 2 astrocytoma. This time it came back as grade 4 glioblastoma.

Anyone else have GBM?

Comments

  • 30 Comments sorted by Votes Date Added
  • DaceyDacey Community Member
    Hi Kaitlin, I'm about 4 months past my surgery for Grade 2 astrocytoma in my right temporalis. Going back to work in my high pressure job has been a very challengin transition. I'm sorry to hear you have regrowth with such a big change in the Grade. How long between the first time and now? let me know if you want to chat more. 


  • KaitlinKaitlin Community Member
    6 years - I would like that very much
  • JLBrownJLBrown Community Member
    Hello,
    My now 33 yr old husband had a Oglio III at the beginning of '12 and came back last summer as a IV. He had surgery in Aug of last year but it came back. They put him on lomustine(pill) and avastin(IV through a port) and he underwent radiation from a "gamma knife" which is pretty intense but a lot less time then the traditional radiation treatments. We literally received a sales pitch for the Optune device, which is silly and inconvenient, at least with my husband being proud and stubborn. A year into fighting the GBM and he is still doing well for the most part. He did have issues with brain swelling which I contribute to an intense cocktail a previous doctor had him on. 
    Let me know if I can help!  
  • KaitlinKaitlin Community Member
    @JLBrown Thank you for sharing! Because my tumor(s) is not methylated (aka chemo doesn't work) the lomustine (CCNU) won't work for me. So far the Avastin is working. 
  • JLBrownJLBrown Community Member
    The Avastin can make you bleed easier, which is alarming! My husband has random nasty nose bleeds and if he pops pimples it can get gross. But so far it is working with him.
  • KaitlinKaitlin Community Member
    @JLBrown Oh, I know. I just had to have my gall bladder removed (after much discussion between my oncologist and the surgeon about the bleeding risk).

    Otherwise it is working just peachy for me too! No recurrences.
  • JLBrownJLBrown Community Member
    There's a new trial at Duke's tumor center if you wanted to look into that. We can't do the trial because his tumor is to close to the ventricle (which could cause the polio to travel down his spine). 
  • JLBrownJLBrown Community Member
    Duke Tumor center is in one of the Carolina's
  • KaitlinKaitlin Community Member
    I have read about the Duke polio trial, and discussed with my oncologist. Mine is very close to my brain stem, so that would probably be a no-go for me too. 
  • JLBrownJLBrown Community Member
    Definitely do your homework on this topic. All the prognosis data is old, full of errors and covers to many grades and types of cancers to consider as credible advise.

    Also a random lady, while bring up this topic, said that sometimes a doctor can come off as cold and scripted but keep in mind that they deal with tragedy everyday and to be patient with them. It was insane and also what I needed to hear because we've dealt with some derps. 
  • JLBrownJLBrown Community Member
    We're going to push to have ours sent there. The nurse practitioner simply stated that it doesn't hurt to send it.  
  • KaitlinKaitlin Community Member
    That's kind of what my oncologist said - that they don't have the data to prove it, not enough testing before publishing. Also that the head of that dept at Duke is known to be a little nuts.
  • JLBrownJLBrown Community Member
    He's also gotten his marijuana card, in MA, and need to push him to check it out. I was looking into the CBD oils or at least THC to maybe combat the spread and maybe calm him down. He was on a lot of decadron(steroids) from the brain swelling and they up'd his keppra(seizure) from 500mg to 3000mg so he can be a dick. Not sure if you've dealt with that but its scary but treatable. 
  • JLBrownJLBrown Community Member
    The crazy ones can be a lot of fun and brake up the monotony. A friend of mine is going through IV melanoma and some doctor with cowboy boot with snake imprints at MassGeneral said I'll take your case and have been going through immunotherapy. 
  • JLBrownJLBrown Community Member
    All the previous doctors told her to grin and bare it. 
  • KaitlinKaitlin Community Member
    We don't have medical marijuana in WI. I've been on Decadron 3 different times... and they were all awful! They work, but geez do they suck. I'm on 1000mg of Keepra daily due to location I think. I thankfully have never had one. I mostly got really hangry on the steroids. They are the devil.

    My doc is eccentric for sure, but he's a freakin' genius. My favorite was my brilliant surgeon Mustafa Baskaya, one of the best in the world for deep brain surgery. After he was in the center of my brain for 8 hours, he came for his second visit in the hospital. I had already been moved out of the neuro ICU and into neuro general. He had me stand up and took a pic of me with his phone. Then in his thick Turkish accent he said, "Tell those doctors at the Mayo clinic that they are full of shit!" They had said I was inoperable. He removed 100% of my tumor that was wrapped around 3 blood vessels. I'm the same and was cleared from neuro rehab on my first appt.
  • kerrishpkerrishp Community Member
    Hi,
    My husband is 46 and he was just diagnosed with GBM level 4. He had surgery to remove most of one of this tumors and he will be starting chemo and radiation at NYU in the next few weeks. I am 37, we've been married a little over 6 years and I'm completely terrified of what's to come.
  • KaitlinKaitlin Community Member
    @kerrishp I hope everything goes well with his resection surgery. The more they can remove before chemo/radiation the better. If you have any questions feel free to ask. Where in his brain in the GBM? 
  • JLBrownJLBrown Community Member
    @kerrishp try and look into the cyber knife (i ment this instead of gamma knife in a previous post) radiation treatment. The beam of radiation is said to be more narrow and will less likely damage the brain tissue around the tumor area and with less side affects.
  • JLBrownJLBrown Community Member
    @Kaitlin that's hilarious about your surgeon!

    He's been keppra since the beginning but this last tumor has given him issues and is now taking the 3000 mg. Not sure if it's that or the tumor that's made him more irritable and with no drive. In other words taking too much keppra could mess with your moods to.

    The doctor wants to wait before he changes his dosage because he just finished weaning from decadron that he was taking for brain swelling and wants to wait and see how he reacts.
  • KaitlinKaitlin Community Member
    @kerrishp Ah ok. I'm on a pretty reasonable amount of Keppra (1000 mg), so I haven't really noticed the irritability. That makes sense. Decadron is the devil. I've been on it more than I would like, so I could see how the doctor would want to wait and see how he reacts. 

    @JLBrown He's great, and one of the only surgeons in the world that can do what him did in my brain.
  • kerrishpkerrishp Community Member
    @Kaitlin he has two tumors. Both on the left side. One near the language area and one near the memory area. They removed about 85-90% percent of the larger one but they couldn't remove all of it without damaging his speech, so they had to stop. The other one they say is too dangerous to operate on.

    @JLBrown I will ask about the cyber knife if the radiation and chemo don't work for him.
  • JLBrownJLBrown Community Member
    So we're back in the hospital because of an edema (brain swelling). Gave him a high dose of decadron but his speech is still messed up. He can say words correctly but doesn't use them appropriately like saying dominoes in reference to what time it is.

    He's gone through this before and has lasted a whole weekend. Not sure if we'll be shipped off to Boston tonight.
  • KaitlinKaitlin Community Member
    Hopefully the swelling goes down soon
  • JLBrownJLBrown Community Member
    He's home now but still having issues. They prescribed a narcotic Vimpat for seizures on top of him 3000mg of keppra and back on 4mg of decadron.

    Going to Boston tomorrow for eeg and MRI. Should be fun with no a.c. In my car.
  • JLBrownJLBrown Community Member
    So there was definitely edema on the MRI and some new f'in growth. They also did an echo MRI and saw even more but it could just be swollen tissue or new growth that didn't absorb the contrast.

    So he's left with two options, to continue with lumustein until the next imaging to confirm it's not working or try a new variation of avastin.

    He got new seizure meds that have a mood stabilizer to go with his keppra.

    But for now we are going to take in all the information and sleep on it.
  • ChloeChloe Community Member
    edited July 2016 Vote Up0Vote Down
    My husband, Duane , was diagnosed with stage 4 glio on June 22.  He is 71.  He is back in the hospital for the 3rd time with edema.  A neurologist called me on the phone tonight and said that the new MRI looked like his brain was a wildfire .  She also didn't agree with the radiologist who said he thought they were strokes.  
  • Grade 2 astrocytoma here!

    But, my friend Greg Cantwell is a 12 year GBM survivor. Check him out: http://gregsmission.org. He now devotes his time to helping others with GBM providing both support and evidenced-based information. He works with the National Brain Tumor Society and Society for Neuro-Oncology. 

    Your friend,
    Liz
  • Hello, so we're at the end of our glio journey. In summery January 2012 started and found a borderline 3 oglio/glioblastoma. Then years of bliss until the summer of '15 it came back as a full glioblastoma. He's still here but declining with a new deficit daily.

    This new glio has taken up the center ventricles area and has starting thriving in hypoxic conditions.

    Don't give up and always get a second opinion. Also if it's calm now in your treatment, sit down with the person who will be calling the shots and come up with a plan or ease them into making hard decisions for you Then forget about it.

    Shawn maybe at the end but he never gave up. And new treatments are discovered daily! Let me know if you have any questions.

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