New member-oligoastrocytoma grade 2

[anjiep]

Hello! My name is Anjie. Quick intro- I am 29 years old, 27 weeks pregnant, have a 9 y/o son, 6 y/o daughter and supportive husband.
I had no symptoms or indications that anything was wrong until May 30th (daughters 6th birthday). I was feeling a little run down and have having episodes that I considered "spacing out" for about a minute at a time. During these "episodes" I was completely aware of what was going on around me. I was up and walking around, just felt "a little strange."
I thought maybe I was anemic or something. Now I feel silly...
The next day I didn't feel any better and the "episodes" became more frequent. I could feel my eyes and cheeks flutter. My family became concerned.I went to the ER and they ordered an MRI.
They found a "baseball" size tumor and diagnosed my "episodes" as seizures. I feel like I sould have know something was wrong, but I was clueless!I was taken to a specialty hospital 2 hours from home, due to my pregnancy. Tumor was removed. Surgery went "well".
I am taking Keppra and dilantin. I have an appt with a neuro-oncologist on friday. I have so many questions.
The pathology stated that I had an oligoastrocytoma grade 2. This was removed from my right frontal lobe. FISH studies for "possible LOH 1p 19q and PTEN loss" are pending.
Has anyone had something similar? Would this be considered cancer? I understand everyones situations are different, but if they did removed the entire mass, would I still possibly ondergo further therapy? Any info would be great. I feel my life has been turned upside down....Thanks for reading this ramble

[ksplat]

Hello Anjie

Fristly, I would like to say I am sorry for your current health problems, you are in my thoughts & prayers.

I am not familiar with the type of tumour you mentioned so am unable to answer your questions. I am certain you will receive replies soon from other members. We are a great community of support, comfort & sharing personal experiences with others here.

You must be finding it very hard to be processing everything that you have been experiencing! I have heard that brain tumours can be growing unnoticed & without symptoms which makes the whole issue even harder to come to terms with!

Cheers, Angie.

[Mama 2 2]

Hello Anjie,

First off, I am so sorry to hear of your situation - my heart truly goes out to you and your family. As Angie (our 'Aussie Angie') mentioned, this is a great place for support and information.

My husband has the same tumour as yours. We are currently just over 6yrs into this crazy journey - You can read our full story by clicking the link in my signature block, but a breif rundown is this:

~Diagnosed after a grand mal seizure at age 25 (and another gms right after diagnosis).
~Had surgery and were told it was 'all' removed.
~MRI's every 6 months, fine for 3 1/2 yrs, then tumour returned
~2nd surgery, followed with radiation, still 6 month MRI's
~Just over 1 yr after radiation, tumour returned again (another seizure)
~No surgery this time, on chemo (temozolomide, aka temodar in the US) and scans now every 3 mos.
~After 3 mos scan was 'clear' (lucky, since his doesn't have the 1p/19q deletion which makes it more responsive to chemo), and after 3 more mos still clear so they took him off chemo for a while
~MRI tomorrow (it's been 3 mos since going off chemo) and we'll see!

There's certainly no reason to feel silly about not realizing what was wrong - I know when my husband had his seizure, brain tumour was the farthest thing from my mind. My husband also takes dilantin for seizures -it seems to work well for him, but I know some people need to work to find the right doseage/prescription to help. If your tumour does have the 1p/19q deletion this will be a good thing as it means your tumour will be more responsive to chemotherapy. This is why they gave my hubby radiation first, as they felt that would be more effective. Fortunately for us though, the chemo has worked thus far.

As to if this is considered cancer . . . it depends on who you ask I suppose. We were never told this was cancer initially. We were told it was a 'benign tumour', and I always thought benign meant 'non-cancerous'. When he started on the chemo and our neuro-onc kept calling it cancer, we asked him why and he stated that any growing tumour is cancer, and whether it's 'benign' or 'malignant' relates to the speed at which it grows. Personally, we never really refer to it as cancer. The 'c' word seems to have so much power and I don't want to let it cast such a shadow on our lives. We don't downplay his condition - we fully understand the severity of the situation (and have shed countless tears) but we also try to stay as positive as possible and not let it get us down - but as you may find the days leading up to scans are usually the toughest as anyone around me today could probably attest.

Keeping a perspective on what's really important in life (and you have a few things to help you with that it sounds like!) really makes it all easier. We were quite ignorant initially of his prognosis, we decided (and were told) to stay off the computer and we listened blindly to our surgeon (who told us it would probably never come back because he 'got it all') and we unfortunatley didn't really get the full picture (apparently it's impossible to completely remove them) - but maybe that's why it also was easier to live with . . . who knows. But now, 6yrs and two children (3yr old girl and 8mos old girl) later, we still live an incredibly happy life. It's certainly not something we want to deal with, but when you have no choice - you deal with it.

I would hope for you that since it sounds like most of your tumour was sucessfully removed, you shouldn't need further treatment until it comes back which could be many years. Every case is so different, so you never can be certain, but now adays it seems the docs like to reserve further treatment for recurrent tumours. Depending on the chromozome deletion/non-deletion, further treatment would be either chemo or radiation, both of which my husband has handled incredibly well. Temodar or Temozolomide (depending on where you live) seems to be the 'chemo of choice' these days, and is usually taken for 5 days (pill form) and off for 23 for each cycle. It seems most people complain of fatigue - my hubby gets absolutely exhausted at the end of the 5 days on the drugs - but little else aside from some nausea perhaps - but it sounds like if you need to be on chemo, this is and 'easier' kind to be on - but hopefully this isn't something you would need to worry about for years.

Well, talk about rambling - I'm the queen of it around here! I wish you well Anjie, and please keep us posted. It is a rollercoaster of emotions and this is a great place to let them out. There will be good days and bad, and it may sound weird, but I think it's important to embrace the bad days and let them be bad - the situation does suck and there is nothing wrong with acknowledging that, just try not to let it completely overwhelm you. It sounds like you have a great family to help you keep a positive perspective on things. Our little one, Caia, was born two days before finding out the tumour had returned yet again, and her name means 'to rejoice'. She, and her sister, have unknowingly helped us incredibly throughout this ordeal.

Best of luck to you Anjie,
~Chelsea

[nancyj19]

Hello Chelsea

I feel for you and wish you well.
Of all the forums I have read, I have heard no one speak of the glidel wafer implants. Was wondering if there are some success stories. It is a slow release of chemo over a period of about two months to kill any cells that may have been left.

Nancy S

[anjiep]

Update~ I had my followup MRI and appointment on Tuesday. I was kind of expecting (hoping?) to hear "all clear, see you in 6 months". Instead, the Dr. said that there is "something" and it could be scar tissue or tumor. I will have another MRI in 3 months. This "wait and watch" is a bit nerve racking. I suppose I should just be thankful that it's not worse, and I am, just dissappointed. Anyone have the "scar tissue vs. tumor" dilema? Surgery was 6/5/08 and the tumor was pretty big (5.1cm x 5.5cm x 7.6cm) so I imagine scar tissue would be expected, but I'm suprised that they can't tell...
If the pathology showed a low-grade tumor, it wouldn't be growing yet, right?
Thanks in advance for any feedback.
Anjie
P.S. Turns out my tumor does not have the 1p/19q deletion, so if I need treatment they will start out with radiation.

[anjiep]

Another question- I have another thread and I intended to update that one, but accidently updated this one. Is there any way I can combine the threads, so it reads more like a "story"?

[brainman]

anjiep, just to answer your last question about moving you update to another topic... phpBB2 (our current software) does not allow us to do that. It allows me to split off replies to start new topics but does not let me combine topics. phpBB3 does and I hope that upgrade happens soon.

How is your daughter?

You are in my thoughts and prayers.

[Mama 2 2]

Hi Anjie,

I'm sorry to hear of the uncertainty with your scan. I know we have had the whole scar tissue/tumour issue in the past. Unfortunately the only way to know for sure seems to be to wait until the next scan to see if there is any change and it is certainly nerve racking.

Since it is so close after your surgery I would really hope that it's just scar tissue, and that is entirely possible. With my hubby they told us 1 1/2yrs after surgery and radiation that what they initially saw was possibly tumour growth but most likely scar tissue. We were a little surprised that it would be that late, but as it turns out that time it was the tumour. I think after his first surgery they had scar tissue show up shortly after, that did turn out to be scar tissue, but I can't remember for certain (I'm a little on the tired side right now).

If it is tumour growth will they do radiation right away, or would they do another surgery first? With Elias they did a second surgery before the radiation, though it was 3 1/2 yrs after the first surgery.

I hope you and your family - and new baby! are doing well. I know you are aware of our story from here, but I've created a 'blog' on caring bridge if you wanted to check out our site and you can see a few pics of our family - it's www.caringbridge.org/visit/eliasminatsis. We've started a new naturopathic treatment that is supposed to help make the tumour more sensitive to chemo, and since yours doesn't have the 1p/19q deletion (like Elias'), if it works for us I'll let you know because it may be something that could help.

Take care Anjie - thinking of you!
~C~

[anjiep]

Hello all,
Things have been okay. I celebrated my 30th birthday last week. My husband threw me a surprise party, it was so sweet. Our newest addition, Mariah, is 3 months old and doing great Joey and Marissa (9 and 6) are great too!
Over the last few weeks, I have had increasing numbness in my left arm. This was "checked-out" during my last visit, but is getting worse. Sometimes it is very painful! The "tests" for carpel tunnel were negative. After a couple sleepless nights I called my neuro-onc to let her know what was going on. I was already scheduled for my 3 month follow up MRI in Jan. but the DR said I should be seen "sooner, better then later" after reporting these symptoms. I will go in Dec 10th. I am really trying to believe what I am telling everyone else...that I probablly pinched a nerve, but I am getting pretty nervous. I don't know why I am so scared, I really doubt the tumor is growing, as is was diagnosed as "slow growing." On Dec 5th, it will be 6 months since this crazy journey began, but it really doesn't seem that long ago. So I guess I am just sort of rambling...I will keep everone updated. I really love having this online community. Thanks to everyone that takes the time to read and repsond to these posts. I read all of the new posts, but feel like I can't offer much support. Maybe someday...

[anjiep]

Hi everyone
I had my scan last Wednesday. It showed no growth They still can't tell what the area is (tumor vs. scar tissure), but this is happy news! Another MRI in 3 months. As far as the numbness and pain, no answers. I get frustrated that I even have to deal with this sometimes...I guess I just need to remember to be thankful that it's not worse...easier said then done sometimes. And oh boy....I was NOT the funnest person to be around a few days before the MRI...guess I better suck it up and get used to it...this is my life now...I just wonder when I will feel "normal" again?
Thanks for listening
Anjie

[brainman]

anjiep, this is indeed great news. I am so glad there has been no change. Keep it up

[Mama 2 2]

Hi Anjie,

SO happy to hear your good news!

I know what you mean about the time leading up to the MRI's, even after 7 yrs we still get the jitters, though I must say I was not as stressed over the last few for some reason.

I know the feeling of wanting to have your 'normal' life again. I was commenting on that on my own blog the other day, though I've just grown to accept the fact that this is our 'new normal'. I think once I accepted that it made the whole thing eaiser to deal with.

I hope you and the kids are having a great time together - I know we enjoy the little things so much - lots of smiles and laughter make the days easier.

Take care and keep in touch!
~C~

[anjiep]

Hello everyone. Just wanting some input....
Since all of this has began I have noticed some changes in my mood. I get anxious, aggitated and just plain sad sometimes. I have been just waiting to feel better, figuring that I just needed some time to deal with all of this. My hormones were crazy due to the pregnancy too. In addition, I thought maybe the Keppra was causing some of this, and I would adjust. But it's not better yet. I have never delt with depression like this before and I hate it. I usually try to avoid medications as much as possible, but I am thinking about asking my doctor if I can start an antidepressant, because I don't like feeling this way. Obiviously, many of you have likely delt with feelings like this. Think it is just "situational" depression, and I just need to work though it, give it some time? I am certainly still functional, I am still working and loving my family...and everyone says I "am so strong" and keep such a "positive attitude", but I just don't feel the same. I count my blessings and know things could be much worse, but I can't help feeling this way...I have been unable to "talk myself out of it" thus far. I guess I am wondering if it's pretty common for people to begin antidepressants after brain tumors. Since depression and is a medical diagnosis, could the surgery/tumor have actually changed the way my brain functions? I wonder if an antidepressant would even help? I have always been such an upbeat type of person... I realize this is a personal decision, and I need to talk to my DR, I just want to know your opinions and experiences....ramble ramble
Thanks
Anjie

[chatterboxgayle]

Hi Anjie,

I just read your post about depression. I've got a GBM IV myself and have been dealing with the tumour, surgery, radiation and chemo since March. I found myself having so many bad days emotionally that I finally talked to my g.p. about it and I started anti-depressants around the beginning of November. How I wish I had started them sooner! Within a couple of weeks I was 100% better. I was finding that I was angry when I woke up in the morning, wishing that I hadn't woke up at all. I had nothing to look forward to, couldn't make myself look ahead to the future that I do have left......life was pretty miserable. My moods were all over the place - up and down continually. The anti-depressants have smoothed everything over. I am now able to think rationally again. I also have a much more peaceful feeling and have just generally calmed right down. I, like you, thought I could handle everything myself - have generally been able to stay upbeat around everybody - but when I was by myself I cried nearly every day. I hope that you will consider taking the anti-depressants, at least give them a try. We need all the help we can get!

Hugs,
Gayle

[brainman]

Anjie, depending on where and how big the tumor is, it is possible that it can put enough pressure on the wrong spot and change a person's moods. However, just having brain cancer can be a major mood changer. I have always been bipolar; having cancer has not helped. Fortunately, Lamictal not only helps me not have seizures but it also helps with my mood swings.

I took Keppra for many years but I also had to take an antidepressant at the same time. Your pregnancy does complicate things for you but I do not know how any meds affect pregnancies... never had to worry about that