grade 3 anaplastic astrocytoma.....spread throughout my brain

rokaren5

I was diagnosed july 2010 with grade 3 anaplastic astrocytoma. I had surgery to remove part of my temporal lobe and some white matter. My surgeon also did a resectioning. My tumor is not a well encased blob. It's mostly in my temporal lobe but fingers over to the frontal lobe. And then there are other abnormal cells spread out all over my brain.
My surgery was 8/6/2010. I finished 5 1/2 weeks of radiation and 6 weeks of chemo (temodar) a little over a week ago. My body is trying to recover, and it mostly is. Except for the fact that I can't hear out of my right ear, and there's a nasty smell coming from it too. Yay. I'm going to call my radiation doc tomorrow because I'm fearing infection at the worst, and just swelling if I'm lucky. I only take an anti-seizure med (Keppra) now.
I have had a great attitude through it all .... until now.
Now I'm finding myself very sad. I'm so jealous of those of you who have had "all of it" removed. I've been told that my tumor will never go away. The purpose of all of the treatment was to slow it.
My tumor first presented in 2/07. It was just a couple of "spaceouts". That's it. No big deal at all. It happened only a few times and then went away. By the time I got to the doc the events had stopped. He said, "If it happens again you have to tell me and we have to look into it." Fast Forward to 4/2010. It happened again. Only 3 times in one week and then went away again. I only went to the Dr. this time because I promised him I would AND because friends pushed me "to just get it checked".
I went to the neurologist in July where I aced the physical exam that she gave me. She said, "Let's just do an MRI although I fully expect to see a normal brain"
My MRI came back abnormal. It showed abnormal cells in the temporal lobe that fingered into the frontal lobe, but they were also spread throughout my brain.
Surgery was 8/6/10. She took out a chunk of my temporal lobe, some white matter, and did a resectioning.
My point is ..... clearly it has always been slow moving. The surrounding brain tissue compensated for the abnormal areas.
Whatever. I just want to be "me" again. I want to hear out of my right ear. I want to lose the 10lbs I have gained throughout my healing. I want to enjoy food. Currently everything tastes terrible. My sense of smell is so sharp I can smell the horrible scent coming from my own ear. I liked it better when I didn't have such a sharp sense of smell. Is this is what's going on with my sense of taste as well? Is it so sharp I can tell that most food tastes like crap? The thrush is gone. Cold doesn't kill my mouth anymore, so I know I just have to sit back and let my body do it's thing. I'm just ready to be on the other side of this whole mess.
-Karen

sue Siwek

just asked my husband who is
just asked my husband who is going in to his 11th year of survival from an inoperable aa grad 3 brain tumor. he had radiation and stereotactic radiation(resection) and he says he recalls a lack of taste. you must beaware that the key point is that he is begining his 11th year of survival! he enjoys all taste. especially sugar!

sue Siwek

just asked my husband who is
just asked my husband who is going in to his 11th year of survival from an inoperable aa grad 3 brain tumor. he had radiation and stereotactic radiation(resection) and he says he recalls a lack of taste. you must beaware that the key point is that he is begining his 11th year of survival! he enjoys all taste. especially sugar!

rokaren5

sue Siwek said:

just asked my husband who is
just asked my husband who is going in to his 11th year of survival from an inoperable aa grad 3 brain tumor. he had radiation and stereotactic radiation(resection) and he says he recalls a lack of taste. you must beaware that the key point is that he is begining his 11th year of survival! he enjoys all taste. especially sugar!

senses
That is nice to hear. I'm only a week done with radiation & chemo, and I think I can feel the sense of taste coming back. I'm hoping all senses come back and maybe take some of the way too sharp sense of smell. :-D
Mostly I love hearing that you husband is 11 yrs out from an inoperable aa. The operated on me, but there's no way to get all of this tumor out. It's too spread out.
Thank you thank you thank you for responding. Already I feel better.

PBJ Austin

rokaren5 said:

senses
That is nice to hear. I'm only a week done with radiation & chemo, and I think I can feel the sense of taste coming back. I'm hoping all senses come back and maybe take some of the way too sharp sense of smell. :-D
Mostly I love hearing that you husband is 11 yrs out from an inoperable aa. The operated on me, but there's no way to get all of this tumor out. It's too spread out.
Thank you thank you thank you for responding. Already I feel better.

Hello rokaren5
Please take a look at my thread about my sister's fast recovery from a situation very much like yours. Her AA3 tumors were not contained yet somehow after less than a year of treatment she has no visible cancer and she has left the doctors at MD Anderson scratching their heads. You might have to copy and paste this.

http://csn.cancer.org/node/185562

rokaren5

PBJ Austin said:

Hello rokaren5
Please take a look at my thread about my sister's fast recovery from a situation very much like yours. Her AA3 tumors were not contained yet somehow after less than a year of treatment she has no visible cancer and she has left the doctors at MD Anderson scratching their heads. You might have to copy and paste this.

http://csn.cancer.org/node/185562

Thanks so much!
Thank you so much for that link PBJ. I read the whole thread. It was just the boost I needed. I was actually very positive when I was first got the diagnosis. NO ONE was allowed to treat me like I was sick. I did fantastic and felt just fine all the way through radiation and chemo treatments. My only downward turn has been since the treatments have finished. My body is now trying to recover, but I have lost the hearing in my right ear. My sense of taste is even starting to come back (mostly things taste average at best). But to get back to your sister. YES. I believe that I am going to live a very long life. I may have to do chemo for a long time to manage the tumor, but I fully expect to see a clear MRI ...... eventually.

I do a journal on the website caringbridge.org/karenmilligan . I am completely open in my writing. It's open for anyone to read. Take a look if you'd like. I love reading my guestbook. If I ever need a shot of "feel good" I read my guestbook. My friends & family who sign it are so open and loving. I just know they're helping my healing process with all the love they send.

I just figure that this tumor "presented" in 2/07, and it was so mild that I didn't even know it was a seizure, so I did nothing about it. That means there is no telling how long I've had this thing. I think I've had it for years and years. That I have done anything at all about it is going to give me the gift of time. More life

Now if my hearing would just come back ....... I could stop being such a big baby. :-)

Thanks again for the link. I love hearing how great your sister is doing. Your post give people the hope we all need.

-Karen

PBJ Austin

rokaren5 said:

Thanks so much!
Thank you so much for that link PBJ. I read the whole thread. It was just the boost I needed. I was actually very positive when I was first got the diagnosis. NO ONE was allowed to treat me like I was sick. I did fantastic and felt just fine all the way through radiation and chemo treatments. My only downward turn has been since the treatments have finished. My body is now trying to recover, but I have lost the hearing in my right ear. My sense of taste is even starting to come back (mostly things taste average at best). But to get back to your sister. YES. I believe that I am going to live a very long life. I may have to do chemo for a long time to manage the tumor, but I fully expect to see a clear MRI ...... eventually.

I do a journal on the website caringbridge.org/karenmilligan . I am completely open in my writing. It's open for anyone to read. Take a look if you'd like. I love reading my guestbook. If I ever need a shot of "feel good" I read my guestbook. My friends & family who sign it are so open and loving. I just know they're helping my healing process with all the love they send.

I just figure that this tumor "presented" in 2/07, and it was so mild that I didn't even know it was a seizure, so I did nothing about it. That means there is no telling how long I've had this thing. I think I've had it for years and years. That I have done anything at all about it is going to give me the gift of time. More life

Now if my hearing would just come back ....... I could stop being such a big baby. :-)

Thanks again for the link. I love hearing how great your sister is doing. Your post give people the hope we all need.

-Karen

rokaren5
I am very happy to help. There is an update to my sister's story:

On Monday, Oct 18 she had another MRI and once again it is all clear!! That makes 4 MRI's in a row showing no signs of cancer. Never give up, no matter what the doctors are telling you.

cindysuetoyou

PBJ Austin said:

rokaren5
I am very happy to help. There is an update to my sister's story:

On Monday, Oct 18 she had another MRI and once again it is all clear!! That makes 4 MRI's in a row showing no signs of cancer. Never give up, no matter what the doctors are telling you.

Thank you!
Thank you PBJ for always being so encouraging. I am thrilled to hear that your sister had another clear MRI! I stand with you, never giving up hope, no matter what the doctors say.

Fighting hard, staying strong...leaning on God...

Love and blessings to you and your sister,
Cindy in Salem, OR

KMPonder

PBJ Austin said:

rokaren5
I am very happy to help. There is an update to my sister's story:

On Monday, Oct 18 she had another MRI and once again it is all clear!! That makes 4 MRI's in a row showing no signs of cancer. Never give up, no matter what the doctors are telling you.

Awesome News!
So great to hear this news. My hubby just got a cold PET scan - his first - and we are over the moon! We know we'll have bi-monthly MRIs and are waiting to hear more details from the doctor, but it's a good, good feeling. Keep these positive updates coming!