A website for discussions about any type of cancer, including lung cancer, breast cancer, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others
+ Reply to Thread
Results 1 to 6 of 6

Thread: Grade II Oligo-astrocytoma (mixed glioma)

  1. #1
    Newbie New User
    Join Date
    Aug 2012
    Location
    Ontario, Canada
    Posts
    7

    Grade II Oligo-astrocytoma (mixed glioma)

    Hi all,

    My name is Rick, I am 37 years old and was diagnosed with a mixed glioma back in August after having a major seizure at work. I had no previous symptoms. The tumor is 6 cm in size and inoperable, it's located on the left side of my brain in the area that controls speech. They started me on Dilantin to control the seizures, which have not occurred since. The Dilantin was throwing off my liver enzyme levels so I had to wean off of it and now I'm taking 1250 mg of Keppra each day. The Doctor's do not want to start radiation at this point because off my age and the possible damage it can cause. I started 5/23 cycles of Temadar(365 mg) last month and will start my second cycle at 275 mg on Monday, they lowered the dosage because some of my blood counts are still off.
    I do suffer from what I call spells which seem to happen an average of once a day, it's an odd feeling which I can only compare to nausea and it seem's to be brought on by anxiety, these maybe mini seizures, other then that I feel really good. The side effects from the Temadar are minimal (nausea and headaches). I stopped drinking beer and wine (which were a staple in my life) and I have cut out all the garbage I used to eat, I try to focus on eating different colored organic fruits and vegetables, fish(omega's), flax seeds, nuts, green tea and minimal red meat. I am not new to this forum, but I thought I would share my full story to see if anyone out there is in a similar situation.

    Thanks

    Rick.
    Last edited by rickt975; 11-10-2012 at 09:05 PM.

  2. #2
    Experienced User
    Join Date
    Nov 2011
    Location
    Central Indiana
    Posts
    76
    Hi Rick,
    Sorry to hear about your tumor. I am not really that familiar with tumors but my GF's oligo was on the left temporal. They removed it at Methodist here in Indy in 02. They did not do much damage but left some of the tumor and did nothing else and it slowly grew back. Her organizational skills were diminished and as time went on she slept more and more. Not just from the tumor but also coupled with depression from a crumbling marriage.

    In 2011 a surgeon, Dr. Cohen-Gadol decided it would be best to perform another resection and removed pretty much all of it in August on the day before her 41st birthday. This time though he did some damage. Her ability to speak, read and write are severely diminished. She has a real problem on the telephone, especially with people she doesn't know so we end up communicating for her. Her kids and those of us around here a lot can communicate with her well. The trade off is that there is no sign of a tumor though she still takes Lamactal and Vimpat to prevent seizures. She has also undergone radiation / Chemo treatment at GSHS in Vincennes, IN and then continued on with the 5/28 cycles of Temodar finishing her last dose last evening.

    I am not a religious man but I hope your situation turns out well. The only advice I can offer is that you educate yourself and stay on top of this. Doctors are great but simply may miss some things or get caught up in their own preconceived notions. You will be your own best advocate. I also hope you have someone close to you that will stick by your side through thick and thin and can also act as an advocate on your behalf.

  3. #3
    Senior User
    Join Date
    Sep 2011
    Location
    Australia
    Posts
    111
    Hi, I am in a similar situation to you.

    I have a grade II oligo-astrocytoma, also in the left frontal lobe. Makes me wonder about those mobile phones given I have always held mine to my left ear (who knows if there is a link, but i certainly use a headset now...). Mine was diagnosed a few weeks after I turned 36 and a month after giving birth to my second child, via a grand mal seizure while I was feeding her in the middle of the night. No other symptoms previous to that.
    I had surgery a month later and my neuro thought she had got out all that was visible of the tumour, but she warned that the tumour was just on top of my speech area so hard to do much more resection. I was also on dilantin as I was breastfeeding (Keppra goes through to breast milk and the impact of that on babies is unclear.) But like you, a month later my blood tests were all out of whack so I am now on Keppra. I tried coming off it about 3 months post-op but had another grand mal seizure about 3 months later, so now back on the drugs.
    I didn't have chemo or radio as it's not the recommended course for grade II tumours in Australia if you have had a good resection, but mine was borderline to being graded a III, so I know its a probability at some point.
    I had a second surgery about 7 months post diagnosis because of a large area that the neurosurgeon and the neuro-oncs were increasingly unsure as to whether it was scarring or left-over tumour. I went to a different surgeon the second time because I wanted a more aggressive option. He told me, from looking at the MRIs pre second surgery, that my tumour had advanced and was probably a grade III by now.
    The pathology on my second surgery showed the tumour to still be grade II and in fact it was much more definitively a grade II than the pathology from my first surgery. Phew.
    I still haven't had any chemo or radio, just MRIs every 3 months.

    Just a few questions, did you have a biopsy to confirm the tumour is grade II? If so, do you know if you are 1p19q co-deleted and whether you are IDH1 positive? Both are good things.

    You are not alone in your battle. There are many of us out there. Good luck with your treatment.
    Diagnosed with grade II oligoastrocytoma after a seizure in July 2011. Resection of approx 98% of tumour (hopefully). IDH1 positive and 1p19q co-deleted. On watch and wait status. No chemo or radio yet. Second round of brain surgery March 2012. Tumour still grade II thankfully.

  4. #4
    Experienced User
    Join Date
    Oct 2012
    Location
    Chicago
    Posts
    65
    Hi All,
    My brother has a GBM 4, just diagnosed Sept. Prior to that my daughter dated a boy for 2 years. He had a mixed oligodendroglioma astrocytoma grade 2/3. They weren't quite sure if it was a 2 or 3. It was completely inoperable as he not only would have been a parapalegic, but an entire side of his body would have not worked, so he would have died. It was on upper back of his head, very close to motor strip. His mom dug deep into research. She sent his films everywhere (California, New York, Wisconsin) Against one of the top docs advise she went to Florida and he received proton radiation. One of the best docs in the country told her he did not advise it, that he would be fried. She went to Florida because at that time they were the only place doing proton. This was six years ago. He is doing fantastic! No deficits and no physical impairments at all. He is on anti seizure meds as he had one seizure, but nothing more for now. It was truly a godsend. Proton radiation does not do any damage on exiting. I don't know if it can be done on any area of the brain, but in his case it was truly a miracle. Good luck and keep us abreast of what you do.
    Mary Anne

  5. #5
    Newbie New User
    Join Date
    Aug 2012
    Location
    Ontario, Canada
    Posts
    7

    Post

    HI guys,

    Ken, thank you for your thoughts and advise, I really appreciate it and I hope everything works out for you and your girlfriend.

    Tipper,it sounds like our situation is very similar. However I am not a big cell phone user, hardly ever really...hard to imagine these days. I did have a biopsy and the grade II was determined from that. I did ask the onc if it could be a higher grade in a different area of the tumor and he said it is possible, I have an MRI on the 29th so maybe we can rule out that possibility. I do have the 1p/19q co-deletion, I am not sure on the IDH1, I will look into it, what would this mean?
    How big was the tumor, is there any chance I could see your MRI before resection, I would like to compare locations. The doctors tell me I have a lot of things on my side including age, the 1p/19q co-deletion and over all health, but it makes me nervous knowing I have a lemon sized tumor on my brain, it would be nice if they could take some of it out.

    Mary Anne, thank you for your advice. I did look into different types of radiation before they told me it was not in the plan as of yet, but I will dig a little deeper.

  6. #6
    Senior User
    Join Date
    Sep 2011
    Location
    Australia
    Posts
    111
    Mine was about a lemon/lime size too. I still have this whopping big hole in brain when I look at the MRIs.. ! I'm not sure if I can get the pic on this website but might be able to. Will look into it.
    Being IDH1 positive is so far considered a good thing. So far, it means you are statistically more likely to live longer than if you are not IDH1 positive. However....... as my neuro-oncologist pointed out there is another type of cancer (I can remember if its leukaemia or lymphoma) where it used to be one version of it that was better than the other, and then they found a cure (ish) for the bad one so now that's considered the better one to have. It all depends what the scientists discover I guess, but for now, anyway, IDH1 is a good thing, though no-one knows why.
    Diagnosed with grade II oligoastrocytoma after a seizure in July 2011. Resection of approx 98% of tumour (hopefully). IDH1 positive and 1p19q co-deleted. On watch and wait status. No chemo or radio yet. Second round of brain surgery March 2012. Tumour still grade II thankfully.

 
+ Reply to Thread

Similar Threads

  1. Low Grade Stage 2 Mixed Glioma (diffused)
    By rickt975 in forum Brain Tumors Forum
    Replies: 4
    Last Post: 08-30-2012, 10:58 AM
  2. Grade 2 Oligo
    By unxpctdbil in forum Brain Tumors Forum
    Replies: 14
    Last Post: 08-17-2012, 10:06 PM
  3. Grade 2 oligo-astrocytoma
    By akist in forum Brain Tumors Forum
    Replies: 19
    Last Post: 01-20-2012, 06:26 PM
  4. Sister in law newly diagnosed with mixed glioma
    By douza54 in forum Brain Tumors Forum
    Replies: 9
    Last Post: 09-20-2011, 11:26 PM
  5. Replies: 7
    Last Post: 04-26-2011, 12:14 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts