Long Term effects after anaplastic astrocytoma

dc9md80
dc9md80 Member Posts: 4
edited March 2014 in Brain Cancer #1
I was wondering if anyone has any experience with the long term effects of radiation after the diagnosis of a grade 3 anaplastic astrocytoma? My husband was diagnosed in March of 1989 and went thru 2 craniotomies, chemo(BCNU)(didn't work), whole head radiation, and radiation implants. He was originally given 6 months but who listens to those predictions. He did have a bout with radiation necrosis which resolved itself. He recovered pretty well at first but now, 21 years later, he has been showing much more fatigue and balance issues. His tumor was in the right parietal lobe. His original symptoms were left leg numbness and the left leg continues to be his weak area. Amazingly he is still working at his job full time but the stress of it is also affecting him. He has been on Dilantin the whole time but we are now going to begin switching him to a new seizure medication because we are told that it can lose it's effectiveness over time. He is also set up for an MRI because he hasn't had one in a few years. His neurosurgeon who had been following him from the start released him as cured. I've seen some references here to new tumors showing up after 20+ years that are caused by the radiation previously given.

Comments

  • lkollros
    lkollros Member Posts: 2
    #2
    My brother was diagnosed
    My brother was diagnosed with a Grade III in 2004. He underwent two years of chemo treatment. He complains of being tired and still has terrible headaches, but all of his MRI's have been clear. Those are the two most common symptoms he has talked about.
  • Toshy
    Toshy Member Posts: 24
    #3
    Late effects, yes :(
    I was diagnosed when I was 7 in 1977. Last year 2 days after Thanksgiving I had a stroke. Long story in short... I ended up at Cleveland Clinic and that doctor was not surprised at the stroke. Well I WAS! He said new tumors as well as strokes are fairly common in survivors.

    I finally found a tool that showed me what other late effects of my specific tumor treatments might be and well I already have most. That tool can be found at the top of the page at beyondthecure.com

    I recenty started a facebook group called "Longest Brain Tumor Survivor?" Well I already know I'm not but I'm fishing for more of us long-timers. As my profile here says (I think ) I want to compare notes with people like me :) At 20 years your husband might not be the longest but I'd sure put him in my long-timers club! So feel free to sign up for my group on FB. I much prefer it to these discussion boards...
  • dc9md80
    dc9md80 Member Posts: 4
    #4
    Toshy said:

    Late effects, yes :(
    I was diagnosed when I was 7 in 1977. Last year 2 days after Thanksgiving I had a stroke. Long story in short... I ended up at Cleveland Clinic and that doctor was not surprised at the stroke. Well I WAS! He said new tumors as well as strokes are fairly common in survivors.

    I finally found a tool that showed me what other late effects of my specific tumor treatments might be and well I already have most. That tool can be found at the top of the page at beyondthecure.com

    I recenty started a facebook group called "Longest Brain Tumor Survivor?" Well I already know I'm not but I'm fishing for more of us long-timers. As my profile here says (I think ) I want to compare notes with people like me :) At 20 years your husband might not be the longest but I'd sure put him in my long-timers club! So feel free to sign up for my group on FB. I much prefer it to these discussion boards...

    Thanks
    Thanks, I'll look for you on Facebook.
  • dc9md80
    dc9md80 Member Posts: 4
    #5
    lkollros said:

    My brother was diagnosed
    My brother was diagnosed with a Grade III in 2004. He underwent two years of chemo treatment. He complains of being tired and still has terrible headaches, but all of his MRI's have been clear. Those are the two most common symptoms he has talked about.

    Thanks
    My husband never had headaches attributed to the cancer, but is always tired. His left side was affected and his leg especially, so whenever he exerts himself too much it drags more. And the older he gets the worse it gets.
  • KMPonder
    KMPonder Member Posts: 102
    #6
    dc9md80 said:

    Thanks
    My husband never had headaches attributed to the cancer, but is always tired. His left side was affected and his leg especially, so whenever he exerts himself too much it drags more. And the older he gets the worse it gets.

    Hubby Two-Time Survivor
    Haven't written on the boards in a while. Just got back from our Duke trip tonight. Hubby was orginally diagnosed with mixed germ cell tumor (inoperable in 1986/87). Responded very well to whole brain/spine radiation and chemo. Tumor completely disappeared (a healing as we like to call it). In August 2009, he was diagnosed with AA (three tumors) - cerebellum and one on and one right off brain stem (Duke doctors say these were caused by his radiation in 1987. Started radiation with low dose Temodar at Duke in Oct 2009 - Dec. Since Jan 2010, he's been on 450 mg of Temodar. Since the last three bi-monthly MRIs showed stable, we got his PET scan just last Friday. The PET was completely cold!!! No evidence of tumors! He is off the Temodar, and we expect a call from his doctor early this week to answer our many questions. We know follow-up MRIs will be required every two months, but we have many more questions.

    Hubby did well on Temodar - no nausea, but he did battle fatigue. He has been able to work full-time since January. His joints started showing some real strain within the last two months, but he had been slowly taken off the Decadron (steroid) over a period of about 9 months. I can tell you that in the last 24 hours since we've had the results, I can see my hubby have a new lease on life again. We rejoice in this news and look forward to the possibility of no more chemo - ever!

    He's claiming another miracle healing, and I am letting him. :) We are just thankful for God's mercy throughout the last 14 months, as there have been some tough emotional times. My hubby is 44, so I hope I'll have him here with me at least 44 more years - brain tumor(s) free!
  • Toshy
    Toshy Member Posts: 24
    #7
    dc9md80 said:

    Thanks
    Thanks, I'll look for you on Facebook.

    dc
    did you ever join my private FB group, was wondering which one you are ?
    8)
  • greenmawmaw
    greenmawmaw Member Posts: 6
    #8
    Toshy said:

    Late effects, yes :(
    I was diagnosed when I was 7 in 1977. Last year 2 days after Thanksgiving I had a stroke. Long story in short... I ended up at Cleveland Clinic and that doctor was not surprised at the stroke. Well I WAS! He said new tumors as well as strokes are fairly common in survivors.

    I finally found a tool that showed me what other late effects of my specific tumor treatments might be and well I already have most. That tool can be found at the top of the page at beyondthecure.com

    I recenty started a facebook group called "Longest Brain Tumor Survivor?" Well I already know I'm not but I'm fishing for more of us long-timers. As my profile here says (I think ) I want to compare notes with people like me :) At 20 years your husband might not be the longest but I'd sure put him in my long-timers club! So feel free to sign up for my group on FB. I much prefer it to these discussion boards...

    facebook group great
    cool that you started a group on facebook.. i will tell my son and hopefully he'll go ck it out.
    in 08 he was diagnosed with anaplastic oligodendroglioma III. then in april 2011 found another, aug 2011 he had 5 days full head radiation, oct 2011 he had stereotactic radio surgery.
    he had his first, and too us a major sezior in june 2011. since all this he has been weak and limps really bad, and trouble with his eyes. and seems to be slowly getting worse as far as weakness and limping. every two months he does a mri, he just had one today and waiting till friday for results.
    he will be on chemo and steriods and sezior meds the rest of his life they say. so i also know that dont help situation either.

    but my point about facebook, is he stays home alone daily during the week, and he has no more friends to visit or go hang out. so this will be a place hopefully that he can go to on his own and talk to people about his problems, or how he feels. i being his mome does talk to me but i know he would like to chat to others, but dont, maybe facebook group he will.
    thanks

Discussion Boards