Adult Medullablastoma (Brain Cancer @ 23)

Hi, new to the forums here, so I decided to introduce myself.

My name is Justin Wymer. I'm 23 (11/14/1987), I live in Northern California, I worked as a carpenter for ten years before this mess.

After suffering 10 months of constant, violent nausea, and eight months of incredulously painful, episodic headaches that put me on my knees, I sought answers from doctors and professionals. I underwent and MRI on August 8th, they were looking for bulging discs or other reasons I would be in pain.

By the time I got home from the facility (all of 15 minutes), I received a call from my primary physician telling me to go directly back to the ER and check in for emergency brain surgery. I'll spare this post of the next three days, including my entire flock of friends and family populating 3 or 4 waiting rooms for three days straight, waiting for my surgery.

I met with the neurosurgeon, the anesthesiologist, and my family one final time before surgery on the 11th (three days later) at about 9AM.

Eight hours later--I'm out of surgery, slowing coming around. My surgeon was chewing out a nurse in my room, at my bed side, so I told him (rather rudely) to "Get out of my rooms."

"What?"

"Get out of my room now."

"What!?"

"Get out of my g'd**n room, now..."

So, I was back to "me" I guess. But in the following two months, I'd be torn apart by a litany of doctors and specialist, all telling me that I was gravely sick. The tumor came out perfectly, 100% resection, according to my surgeon, clean as it could have come out.

Six inches of a scar on the back of my head and people throwing around words like, "Cancer, Radiation, Chemotherapy"... A trip to San Francisco and back to see the "best of the best" and now, starting October 17th (2011) I am starting radiation.

Now, again, this is all new to me, but they'll be dosing my brain, brain stem (where the tumor was), and my entire spinal axis.

Then they suggest chemo therapy after that...

So, what am I in for? Busy trying to facilitate a place for my family to care for me while I'm "down and out" like this, manage a relationship with my girlfriend, and still retain enough sanity to actually function and cope and process all of this...

Help?

Comments

  • 7 Comments sorted by Votes Date Added
  • Hi Justin, welcome to the forums :) Sorry to here about your diagnosis, and I hope you find the help you were looking for here, if nothing else I think we're good listeners! Nice story about waking up from surgery- I remember waking up after my first surgery and as soon as the doctor saw my eyes open he started talking about how my surgery went and then walked out... I wasn't aware enough to remember a thing he said after except something about it being deeper then he thought which certainly didn't make me feel great. Best of luck with all your treatment and everything.
  • Hey Justin, sorry to hear about everything but welcome to the website. It sucks, I know. Im 26, was just offered my career job at a fire department I had been trying to work for for years. They called and offered me the job then the next day my primary doc called me and said I'll be meeting a nuerosurgeon to have brain surgery. So that didnt work for the job so on August 9th, I had a tumour resection on my right temporal lobe, they got out about 90percent of it. Ends up the tumour was cancerous, oligoastrocytoma grade 3. I just ended my 6 weeks of radiation and temodar (chemotherapy pill).
  • Hi Justin. My 22 year old daughter had emergency brain surgery on October 5 for Medulloblastoma. She had bad headaches for about two weeks and started vomitting so I took her to the ER and they did an MRI and found a 5cm tumor in her cerebellum. She is currently undergoing proton radiation for the next six weeks in Jacksonville, Florida to her brain, and spinal axis. They are not doing chemo because her spinal MRI, PET scan and spinal tap were clear. How are you doing? How are you handling the radiation?
  • Hi there, welcome to the group.
    Seems like emergency brain surgery is not as uncommon as i thought...i had one about a year and a half ago. Started with headaches, vision problems, etc...i had a tumor about the size of a cassette tape holder removed from my right occipital (?) lobe before i even knew what was going on. I waited 8 months for any sort of treatment (i prefer to try holistic remedies first), but when the tumor finally came back i went thru 6 weeks of radiation and Temodar and now i am on a monthy dose of Temodar which will continue indefinitely (either until it stops working or something better comes along) I find that each month gets a little easier, guess i have built up some sort of tolerance to it. I don't even have to take the antinausea with every dose anymore!
    How are you holding up? I had a very hard time at first, but finding this forum helped me realize that i was not alone in this s**t. a bittersweet realization, of course....
  • How did you handle the radiation? any major side effects? Did you have proton radiation? I get so worried because they are radiating her brain and said she may experience hearing loss, lose her hair etc. She is getting sick even with the anti-nausea meds. I guess her body needs to adjust to it, but it is so hard watching her go through this.
  • SurvivedSurvived Community Member
    I know you posted about seven months ago, but I'll just add my two cents because I had Medulloblastoma when I was 14. What radiation to the brain did to me is damaged my pituitary gland, which meant I had to go on growth hormone in order to grow, but since you're older it not too relavant to your situation. But if the radiation completely destroyed the pituary functioning you'll probably need to go on growth hormone because even adults produce low levels of GH, which maintans muscle mass and also produces a general feeling of wellness. The pituitary also produces cortisol (I think), which is a stress hormone. The docs thought that the radiation damaged my production of this hormone. You show probably get tested for the lack of cortisol before you go on the medicince because prednisone can cause osteoporosis, but so can radiation. The radiation to the head also destory the functioning of my thyroid gland which produces the hormone thyroid. It also is a hormone that gives you a feeling of wellness, so you should get on thyroid medicine if that happened. Radiation to the head gave me some nuerological issues too, like slower processing. It's not too bad, but when I was taking the ACT test it was more evident. I had to have time and a half to finish it, but in everyday life the neurological promblems aren't too evident. You should get neurological testing to find out if the radiation has aadversely affected you. As far as radiation to the spine, the only thing that I know of that it did is stunt my growth. It could have done more but I'm not seeing or feeling anything.
    I had four different chemo therapies. VP-16 ( It's an oral chemo that I had while going through radiation), Cisplatin, Cyclophosphamide, and Vincristine. I assume all of the make you lose your hair, but I'm not sure because radiation to the head destroyed alot of my hair follicles. The Cisplatin really affected my hearing, it damage like 40%-50% of it. Now everybody is different so don't go thinking you're going to lose that much of you're hearing and the same goes for the radiation. The nurses give you Mesna to protect your kidneys or liver or something like that when you get Cyclophosphamide. Other than that it just made me sick ( ie: vomitting, feeling crappy) like all the other chemo therapies did. The Vincristine affect my balance when I took it. But the intial surgery affected my balance WAY more than this stuff. It also made my bones hurt, mostly my legs. That's just a general summary of what I experienced. There nothing nice about chemo or radiation, but cancer isn't nice so I guess you have to fight fire with fire sometimes. I hope this answers your question and sorry for painting such a bleak picture.
  • Hey Justin-
    Sorry to hear about your diagnosis, and hope you managed to figure some stuff out since you posted. Where did you get your surgery done? I had an emergency craniotomy done in Redwood City Kaiser and then another non-emergency one done this year. I'm a pretty good customer there. Was wondering if you had had it at UCSF? I am looking to get a second opinion done there and wanted some firsthand opinions of their neuro oncology team.

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