Grade III Anaplastic Astrocytoma

Back in April, I had seizure as I was getting ready to leave my yoga class at the community college I was attending. I was talking to my friend, and suddenly I started stuttering, and then lost my speech completely. As this was happening all I could think was "Oh, I should tell her I can't talk... but wait I can't talk!" and then I blacked out. When I came to, they had called an ambulance and my tongue was swollen because I had bit it during my seizure and I was really confused! The ambulance took me to the ER, where they did a CT scan, which came back abnormal, so then they did an MRI and found multiple lesions, the largest of which was located on the left frontal lobe and told me it was either MS or a brain tumor. They set me up an appointment for the next day with a neurosurgeon and prescribed me anti-seizures (Keppra, no it doesn't make me grumpy).

We met with the neurosurgeon, who was very nice, and decided before they cut my head open that they should cover all the bases to make sure it wasn't MS. So, she ordered a lumbar puncture to test for that, which was... uncomfortable. It also gave me a bad headache. But it was the least invasive procedure they had! (Un)fortunately? it came back negative for MS a couple weeks later. Those weeks were probably the most agonizing I have experienced so far because we didn't have a for sure diagnosis yet. When the spinal fluid results came back negative, the neurosurgeon recommended that we go to Seattle (we don't have intra-operative MRI here in Boise) to remove as much of the tumor as we could. I was told at that time that because they didn't observe any enhancing on the MRIs that it was probably low grade and not malignant. I was also told I could sleep through surgery.

We went to Seattle in June, and my surgery was at Swedish Medical Center (best on the west coast for this kind of thing it turns out) on the morning of June 8th. I was nervous, because despite what the neurosurgeon in Boise had told me, when we met with neurosurgeon in Seattle two days earlier he informed me that I would indeed have to be awake due to the location of the tumor. The anesthesiologists did their best to comfort and assure me but I was still scared! Turns out all I remember is them calling my name a few times right twords the end of the surgery when the swelling got so bad I stopped responding. When I woke up I initially could grasp weakly with my right hand, but that went away by the end of the night. I had supplementary motor syndrome on my right side from the swelling, so I could feel everything on my right side but I couldn't make anything move; I was completely paralyzed. The surgeon assured me that this was temporary.

Good news though: they were able to completely remove my tumor! Yay! Bad news: it turned out to be malignant after all. In the center, on the parts the MRI couldn't see and really could only be diagnosed with a biopsy. It was hard for it to sink in that I had cancer... it still doesn't seem real. I met with the neuroncologist in Seattle, and he asked me since there wasn't one available in Boise where I live (the sucky thing about being from a small city I suppose) if I was okay with traveling to and from Seattle for MRIs every 3 months for him to monitor my progress. I agreed that it would be best for someone who only dose this to handle it. We decided that we would aggressively treat it, which means radiation and an oral chemo pill, Temodar. I also attend speech, occupational, and physical therapy twice a week to make up for the deficits that were caused by the surgery and SMS. It's been a little over a month since my tumor was removed and I've regained full range of motion in both my limbs, but the commands take a little more focus and effort to do, especially in my right leg (the tumor was located closer to the part that controls the leg).

I'm about halfway through radiation treatments now. About a week and a half ago, I noticed my hair was falling out... within two days I had lost all my hair in a big patch on the top of my head, right around my incision, where they were shooting xrays into my brain. At first I got upset because it happened so quickly, but now it's just another thing to deal with, haha. Oh, remember how I said that the initial CT/MRI showed multiple spots? I guess they were nothing, except one on the right side, which my neuroncologist thinks may be the start of another tumor, so they're also treating that, and the passageway in between the left and right hemispheres where the cancer could have traveled. Get it all out is what I say! As for side effects, when I left the hospital I was on dexamethasone, a steroid for swelling in my brain, but they had me on a taper and by the time I started radiation I was off of it. Well, a couple days in, I woke up on morning and threw up and thew up, I couldn't hold anything down, not even water. I met with the doctor that day at the radiation clinic (after I thew up in their hallway...) and they said it was probably the radiation swelling my brain again, so they put me back on the dex and I haven't had and nausea since.

As for the Temodar, the only side effect I'm having is I get some pretty bad joint pain in my knees after I take it, and that only started last Wednesday night. I've been taking 5mg tablets of oxycodone before I take the temodar, which seems to help, but I feel like it's just another medication I have to take on top of all the others.

Anyway, that's my story. Looking at the others on here, it sounds pretty similar to all of your guys' experiences, so I guess that it's good to know I'm not alone. :)

Comments

  • 14 Comments sorted by Votes Date Added
  • samisami Community Member
    Steffane Caiola how are you now dear ? You fully recovered after the treatment ? My hb dignosed with the same last year and went through the same treatment and all
  • Hiya! Definitely NOT alone! (((HUGS))) we've been on this journey for almost a year now with my husband. As scary as it all is, all the ups and downs, somehow we've found the positive. We truly believe in the treatment it has helped Ben so far, it took time though to see the actual results. Sounds like you have great care, and I hope you have great support also!

    Don't be shy to reach out for support!!! There are many great people on here to talk to!

    Hope for good days!
  • You are NOT ALONE! I actually had the exact same diagnosis. I was having headaches and small seizures before diagnosis. I have had 2 resections and radiotherapy and would love to talk about it more and share stories. :)
  • Hi there! Like everyone else said, "You're not alone" :) My story and diagnosis is a little different. I was diagnosed my senior year (age 21) in college with a pediatric brian tumor a little bigger than a golf ball. After my diagnosis my life changed completely! I had to drop out of college and move back home with the parents ;/

    Anyway, I had 6 weeks of radiation and lost patches of my hair. I eventually decided to just shave it off! I got myself like 2 wigs which look super natural. Many girls aren't big fans of wigs, but I think it brings back my confidence physically and emotionally. I'm now doing chemo which is making me lose every single little hair on my body...Weird, but convenient in a way ;)

    Being awake during surgery would have freaked me out! High five on that one! That takes some courage. I had two brain surgery's and I can't imagine having to be awake. Well thanks for sharing your story and I hope all turn out well in your treatment.
  • @Laura
    Yeah! Feel free to message me :)

    @Ellie
    Yeah, I thought about shaving my hair or cutting it shorter, but I decided not to in the end because I was put off by the idea of wearing a wig in the middle of summer but equally put off by being bald haha. So I got used to it, but I still don't leave the house without a hat.

    And yeah it freaked me out too!! I would usually be way too chicken to go through with it but I didn't have a choice lol. Luckily I don't remember much or I'd probably be traumatized hahahaha
  • Steffanee Caiola;4943 said:
    @Laura
    Yeah! Feel free to message me :)

    @Ellie
    Yeah, I thought about shaving my hair or cutting it shorter, but I decided not to in the end because I was put off by the idea of wearing a wig in the middle of summer but equally put off by being bald haha. So I got used to it, but I still don't leave the house without a hat.

    And yeah it freaked me out too!! I would usually be way too chicken to go through with it but I didn't have a choice lol. Luckily I don't remember much or I'd probably be traumatized hahahaha

    Well if you ever want to try out a wig, they're pretty cool and surprisingly comfortable. It's all about finding the "perfect" wig! So how is treatment going for you?
  • Hi Ellie! I was diagnosed with Anaplastic Astrocytoma Grade 3 on August 26, 2011. I start radiation and chemotherapy next week and am looking for a cute wig to wear. Where did you buy your wigs?
  • Hi Kelly! First of all, I just want to wish you the best of luck with your treatment. I had 6 weeks of radiation back in June and am currently being treated with high dose chemotherapy. If you ever have any questions about treatment feel free to ask?

    Well I have two wigs, a short one and a long one. I actually bought them at a local wig shop in the DFW area. I'm not sure where you live, but just google local wig shops. Several shops should pull up. I would recommend buying 100% human-hair wigs. Human-hair wigs are a little more expensive because they of course look more natural. But not only do they look natural, you can curl/straighten/wash the hair. It's like REAL hair. I paid about $70 for my short wig and $130 for my longer wig but I think it was worth it. Synthetic wigs look too fake, but can also be convenient because you never really have to style them.

    Good luck in your search! I also recommend calling the places to ask if they carry human hair wigs before going. Some places like to sell human hair for a lot of money, so I don't recommend paying more than $200 for a long decent looking wig :)

    Best wishes,

    Ellie
  • Treatment is going fine for the most part, it's a lot easier to deal with now that i'm done with radiation. I never had to go in for chemo, just pills, so that's not really a big deal. Just waiting for my hair to grow back mostly haha
  • Thank you, Ellie! I looked at a local wig shop where I live. I want a human hair wig, but they seem so expensive. What did you do about your eyebrows?
  • Hey Kelly! Sorry that I didn't reply sooner, but I just literally got out of the hospital. I go inpatient for 5 days to get chemo.

    Well, I definitely recommend looking around more for wigs. Like I said before, some places like to overprice human hair wigs. It's kind of ridiculous. For my eyebrows, I got an Anastasia eyebrow kit, which comes with 5 eyebrow stencils and eyebrow wax, powder, and eyeshadow. This product was a little overpriced, so if you can find an eyebrow stencil and powder that match your normal hair color, you should be set! Good luck on your seach :)
  • Thank you again! I noticed that you were diagnosed at age 21. I'm actually 21 right now so I got into St. Jude Children's Research Hospital. Out of curiosity, are you being treated by St. Jude?
  • Same diagnosis as you but never had any seizures! And mine was non operable. After a full year on temodar I JUST learned that joint pain was a side effect. I've been dealing with intense hip joint pain but had just assumed it was from limp I developed from weakness on one side. I'm so glad to know I don't need to relearn to walk (again!) and I'm not the only young person with temodar joint pain!
  • bls0807bls0807 Community Member
    I'm new here and have the same diagnosis. Was just diagnosed on April 10th. Had a seizure out of nowhere, was rushed via ambulance to the hospital where they found a tumor larger than a clementine but smaller than a tennis ball.

    It's a grade 3 anaplastic astrocytoma. I have an IDH mutation which is apparently good, but still waiting on results about MGMT. I already had a resection and they were able to get 98% of the tumor out. I start radiation on May 30th and will be starting temodar that day as well. As a 29 year old female, I was just rushed through an IVF cycle in an effort to preserve my fertility and luckily that went well. I just feel SO overwhelmed as this is all happening so quickly, I barely have had time to process it all. I have a great support system in my husband, family and friends but it feels like no one understands what I'm going through. It's scary and it sucks. :(

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