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First post here: husband has AA3

marriedmom
Posts: 2
Joined: Sep 2012

Hi all,
My husband was dianosed with Anaplastic Astrocytom grade 3 in july of this year. He underwent a partial removal of one tumor, the other is too deep to get to. He is currently doing temodar and radiation, which will be done in 2 weeks.

I'm just seeking some insight. My husband is on prednisone, which they are weaning him off of, but his behavior is all over the place since treatment has started. He becomes very irrational, argumentative and difficult to live with.
I know Prednisone can do this ( I an a nurse as well ) but I am concerned that the tumor is worse too. His physical sypmtoms are worse and his behavior is erratic.
Also, what do you look for as far as end stage symptoms? I know people can live a long time with this, but my husband keeps saying, he doesnt know how much longer he will be here. :(
His behavior has caused issues in our family as well and many friends dont come around or call like they did at first. He tends to say what he thinks, without filtering it first and he is aware he does this and thinks its funny.
Has anyone heard if AA3 can progress to glioblastoma? My guess, is yes, it can, but just want to know if anyone out there has heard of it as a fact.
Thanks for listening.
this is all so overwhelming for all of us.

Marriedmom

biodeb
Posts: 5
Joined: Oct 2012

Hi Marriedmom,

I understand how overwhelmed you are feeling. Our family has two adult children that were diagnosed two months apart last fall - my daughter has a GBM and my son has an AA. Both tumors are in their right frontal lobes. My daughter's symptoms have always been more extreme and it took about three months before she seemed more like herself again. She was in a fog after surgery and during chemoradiation, she was irritable and very argumentative. Everyone kept telling us it was the steroids. I'm sure that is partially true but I'm certain it's the tumor, too. She has been unable to get off the steroids completely but has weaned down to a very minimal dose.

My son was able to to get off the steroids and anti-seizure medications completely. He is virtually asymptomatic. They are like night and day in terms of their symptoms.

My daughter did become less argumentative but still says what she thinks. Can I ask where your husband's tumor is located? The reason I ask is because in my kid's case, their tumors are in the region of the brain where the personality, logic and decision making skills and emotions are located. Just wondering if that could be contributing to your husband's emotions.

I hope he changes his mind about how long he can stay around. I hope he isn't giving up. It sounds like he has lots to live for - you and his family!!

Yes, it's possible for an AA to become a GBM - they are both gliomas and behave the same way. An AA is less aggressive but still a serious tumor.

I'll be keeping you and your husband in my thoughts & prayers!! I'm glad you reached out - this discussion board has lots of helpful information and many that understand.

Take good care of yourself.

marriedmom
Posts: 2
Joined: Sep 2012

Thanks for your reply. Sorry,. I havent responded sooner. Busy with his treatments and working full time, etc. He just finished his treatments yesterday!! Whew! Thank God!
His tumor is in the right frontal parietal temporal area. It is in the area of personality and moods, I believe.
He is finally off the steroids but still "speaks his mind" freely. I know he can control it because he will be talking with a stranger and be nice, then turn to me and not be. He seems to get angry with me easily. I know part of this is because he knows I will be here with him, but I have let him know, repeatedly, that I am not going to be treated that way.
Hopefully, it will get better.
Yesterday, the radiologist oncologist told us that he expects him to live a long time because he is in great health otherwise-altho he counters that with some people only live a year.God is in control.
Thanks again for your help!

Tubbs
Posts: 51
Joined: Jul 2009

I'm sorry you're having to go through this. I imagine you have so many questions but aren't quite satisfied with the answers, nor do you get all of your questions answered.

Sorry to sound like a cliche, but the best way to deal with it all is to go one day at a time and never get too high or too low.

My wife was diagnosed with AA grade 3 just over 5 years ago. I'm not trying to scare you but after 4 years of good MRIs, she had a couple new tumors pop up. The docs could not be certain of what the new tumors should be diagnosed as, but it looks like gliomatosis cerebri. Yep, a type of glioma which is not good.

One very, very important thing to know is that every tumor is different, so, as much as we want to compare cases in our search for answers, every situation is unique.

Again, I'm sorry you're on this new journey, but this is a good forum to get some answers and support. Don't be afraid to come on here and vent. You may want to check out the caregivers forum. It's for folks like me who are a bit further down the road then you are, but it might help you in some situations.

Best of luck to you and your husband.

connsteele
Posts: 232
Joined: May 2011

I agree with BioDeb. Physical and/mental/emotional changes after a brain tumor diagnosis depends on where the tumor is located in the brain. Our son's tumor was located in the back of his brain, the cerebellum. As a result he had serious balance and motor problems.
And yes, astrocytomas can evolve into GBMs, as did our son's.

The radiation after surgery (the surgeon could only "debunk" the tumor as it had diffused tentacles extending out. As the surgeon said, he would have had to remove the entire cerebellum to get it all. Of course the, he would have been in a vegetative state.

The radiation was brutal, couldn't stand or walk. He was put on 16 mg of Decadeon (whopping dose for a small guy like him), but he did regain some mobility and got out of the wheelchair to using a cane. But it did effect his mood. in fact we called them the Green Meanies pills. Once he was weaned off, his mood improved greatly.

On the Temodar, he was very tired. I asked his NO if it was the meds, or depression. he said it was probably a combo of all three: tumor, meds, and depression. He was put on an anti depressant and I think it did help.

Our son lived only a year after his surgery but I don't want his case to discourage you. his case was unique. This was his second brain cancer diagnosis. He was diagnosed with a medulloblastoma when he was 8. He went 26 years with no cancer after that. (although he did have some long term effects, but nothing that prevented him from living a full productive life). Then, at the age of 35, he was diagnosed with an AA3. the consensus was that it was caused by the radiation he had when he was 8.

I really wonder if they didn't really know what kind of tumor he had. Initially, the surgeon said it was a medulloblastoma(after 26 years?) Then, his tissue sample was sent to a Dr. Burgers at Johns Hopkins who dx it as an AA3. But in his report, he said that this was a highly unusual tumor, so maybe it was a mix. I don't think it mattered in the end. The treatment would probably have been the same anyway (the treatments he had when he was 8 disqualified him from most trials).

One thing...other than the physical deficits, he never had seizures or intense headaches, even towards the end. There is a website called "brain hospice" which was really helpful in trying to determine what stage he was in. But from what you are saying, I don't think it pertains to your case .

Sorry you have to go through this but there are many success stories here, so take heart and live life as fully as you can.

Connie
Mother of David
2/28/77-4/14/12

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