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

rokaren5
rokaren5 Member Posts: 14
edited March 2014 in Brain Cancer #1
I was diagnosed with level III anaplastic astrocytoma this past July (2010).
In 2007 I had some really mild "zone out" type activity. It only happened a couple of times and then went away. When I mentioned it to the doc he said, "If it comes back we have to look into it". 3 years later, in April of 2010 they came back. It only happened 3 times in 1 week and went away. Friends & family said, "Just go get it checked." and so I did. I aced the physical exam. I showed absolutely no physical indicators. My neurologist said, "I fully expect to see a normal brain."
The MRI was abnormal. What the MRI showed was an area in the temporal lobe that had abnormal cells. It also showed those abnormal cells spread from the temporal lobe into the frontal lobe and then also spotted throughout the brain.
I was diagnosed with level III anaplastic astrocytoma.
I had surgery on 8/6. My surgeon took out a chunk of my right temporal lobe and did a resectioning.

I read the discussion boards, and I'm envious of those of you who have had the entire tumor removed. Mine is spread throughout my brain. Diffuse I was told before chemo & radiation started that the goal is not to get rid of this tumor. It's to stop it from growing. 2nd MRI is better than first. No pressure on my brain. No swelling. The tumor is not growing and may actually be shrinking. It's great news.
I have long understood that this is something I'll just have to "manage". It's obviously very slow growing with only presenting itself once in 2/07 and then not again until 4/10. My surgeon said, "I expect this will eventually take you but not for a very long time." I agree with her, but I find myself sad and scared. I'm so sad that I've had no connection on this website. A couple of people have reached out but never replied to my replies. My brain tumor support group was canceled in Dec. I've only been to one meeting, but it felt so great to be with others going through what I'm going through, and now I miss them. I'm back to feeling alone in my battle. New to me are mini & deja vu seizures. I'm so thankful to my friends and family who know they do not "know" what I feel, but they are present and loving. I could ask for nothing better.
-Karen
I have hit a wall.
My attitude has been so upbeat for so long. Now I'm frustrated with the ear thing. I'm ready to be me again. I'm ready to return to my job and my normal life. This ear thing is making me batty though and sad.
Karen



I would really love to hear some input from someone who is much farther along living with this disease.
Thank you so much,
Karen

Comments

  • Fusionera
    Fusionera Member Posts: 10
    #2
    To Karen re anaplastic astrocytoma
    Dear Karen,

    My heart goes out to you - I am a fifteen-year, three time survivor of an oligoastrocytoma. Mine too was in the right temporal lobe, and I ended up having it resected through 2 surgeries that were 7 months apart. While I did not have the ear issue you mention above, I did lose hearing in my right ear around 1999-2000, five years after diagnosis, and it happened very suddenly. It was determined to be the result of radiation therapy for my tumor.

    I completely understand your frustration - when it came back again in 2005, 8 years after I finished chemo and 9 years after my 2nd surgery, I was angry. Escrow was closing on my first home the day I found out. Welcome to your new home...next week you start chemo! AGAIN! Fun fun fun...So I packed up my apartment, kept working full time, moved into my new condo and started another clinical trial.

    Re the bone mnarrow issue - I almost didn't finish the clinical trial of Temozolomide (Temodar) in 1997 because my blood counts dropped so severely. I don't know how your appetite is, but if you can bone up on protein, calcium and iron that helped me. There may also be drugs out there now that can help. For three weeks my doctor checked my blood regularly every week to ensure that my platelet counts were returning to normal levels. When they finally returned to a normal level, I was able to take the last cycle of Temozolomide and finish the trial.

    There IS hope..I am still here after three bouts of this in fifteen years and I have no idea why I am still here. Keep me posted and hugs to you.

    Regards,
    Johanna
  • rokaren5
    rokaren5 Member Posts: 14
    #3
    Fusionera said:

    To Karen re anaplastic astrocytoma
    Dear Karen,

    My heart goes out to you - I am a fifteen-year, three time survivor of an oligoastrocytoma. Mine too was in the right temporal lobe, and I ended up having it resected through 2 surgeries that were 7 months apart. While I did not have the ear issue you mention above, I did lose hearing in my right ear around 1999-2000, five years after diagnosis, and it happened very suddenly. It was determined to be the result of radiation therapy for my tumor.

    I completely understand your frustration - when it came back again in 2005, 8 years after I finished chemo and 9 years after my 2nd surgery, I was angry. Escrow was closing on my first home the day I found out. Welcome to your new home...next week you start chemo! AGAIN! Fun fun fun...So I packed up my apartment, kept working full time, moved into my new condo and started another clinical trial.

    Re the bone mnarrow issue - I almost didn't finish the clinical trial of Temozolomide (Temodar) in 1997 because my blood counts dropped so severely. I don't know how your appetite is, but if you can bone up on protein, calcium and iron that helped me. There may also be drugs out there now that can help. For three weeks my doctor checked my blood regularly every week to ensure that my platelet counts were returning to normal levels. When they finally returned to a normal level, I was able to take the last cycle of Temozolomide and finish the trial.

    There IS hope..I am still here after three bouts of this in fifteen years and I have no idea why I am still here. Keep me posted and hugs to you.

    Regards,
    Johanna

    thanks Johanna
    Thank you so much for sharing your story with me Johanna. That sucks that your hearing loss hit you so long after your treatment. I'm starting to learn that I'll have to fight this disease all of my life. That sucks. I just want so badly to return to the me I was before even the diagnosis. I only had very mild seizures 3 years apart and only about 3 in a week. Then it would all go away. Now it is my entire life, and it's so frustrating. I've starting looking for a support group in my area. I think I really need to talk to people who understand what I'm going through.
    It's so comforting to connect with someone who has gone through so much more than I have and is doing so well. You give me hope. I finished chemo & radiation about a month ago. I tried to go back to work in NY and ended up in the hospital. I got so light headed and dizzy. I couldn't focus my eyes on the paper in front of me. It threw the live TV show that I work on into a terrible spot. Wonder if they'll let me try again someday when/if I ever stop being so tired.
    Thanks for the info on food too. I want to do everything possible to help my body stay strong enough to fight the hell out of this tumor.
    Reading your message makes me feel supported and understood. From the bottom of my heart Thank You.
    There are so many people around me who are so loving and supportive, but it's a very lonely disease.
    Karen
  • Kimberlyann72
    Kimberlyann72 Member Posts: 6
    #4
    rokaren5 said:

    thanks Johanna
    Thank you so much for sharing your story with me Johanna. That sucks that your hearing loss hit you so long after your treatment. I'm starting to learn that I'll have to fight this disease all of my life. That sucks. I just want so badly to return to the me I was before even the diagnosis. I only had very mild seizures 3 years apart and only about 3 in a week. Then it would all go away. Now it is my entire life, and it's so frustrating. I've starting looking for a support group in my area. I think I really need to talk to people who understand what I'm going through.
    It's so comforting to connect with someone who has gone through so much more than I have and is doing so well. You give me hope. I finished chemo & radiation about a month ago. I tried to go back to work in NY and ended up in the hospital. I got so light headed and dizzy. I couldn't focus my eyes on the paper in front of me. It threw the live TV show that I work on into a terrible spot. Wonder if they'll let me try again someday when/if I ever stop being so tired.
    Thanks for the info on food too. I want to do everything possible to help my body stay strong enough to fight the hell out of this tumor.
    Reading your message makes me feel supported and understood. From the bottom of my heart Thank You.
    There are so many people around me who are so loving and supportive, but it's a very lonely disease.
    Karen

    Hope
    I need hope for my father who has grade 3. He has had surgery and is now in radiation/chemo. I am scared if anyone wants to talk let me know.
    Kim

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