Astrocytoma - Long Term Effects?????????????

Octobergirl
Octobergirl Member Posts: 2
edited March 2014 in Brain Cancer #1
I was diagnosed with a brain tumor in Sept of 2006. After two resections within 5 weeks, 6.5 weeks of radiation and 20+ months (extra just to be sure) of Temodar.....lingering symptoms of fatigue. My oncologist told me it would take me up to a year to get my energy back, it is going on 20 months. I was an avid exerciser, which now, can barely run a mile without stopping many times, lately I have been walking into things (stubbing my toes on doors and furniture)- ouch! There is also a noticable change in my personality that I can not explain. Even my husband ask me "what is happening to you". Anyone else experience any of these symptoms. Off for a check in a few weeks, will talk to oncologist as well.

Comments

  • amberhallfin
    amberhallfin Member Posts: 1
    #2
    It has about 9 months since
    It has about 9 months since my last dose of Temodar and I still feel fatigued.
  • janmiz
    janmiz Member Posts: 2
    #3
    long term effects
    My daughter Debbie wiil be an 8 yr.survivor of anaplastic astrocytoma.She still suffers fatigue.she has had surgery ,chemo & radiation the same as you.I have never got any answers from doctors on long term effects.I have figured it out myself.I guess they never had people to survive so long as to do a study.My daughters short term memory is getting worse her cognition is bad and she can't organize& lacks common sense.i truly believe that the radiation has killed the bad cells ,but really damaged the good cells.I am afraid that the fatigue will always be with you.sometimes you have to push yourself.you should join a brain tumor support group.We tried it for 6 months but she just won't help herself.They will tell you that this is your new normal
  • Lifeistooshort
    Lifeistooshort Member Posts: 4
    #4
    janmiz said:

    long term effects
    My daughter Debbie wiil be an 8 yr.survivor of anaplastic astrocytoma.She still suffers fatigue.she has had surgery ,chemo & radiation the same as you.I have never got any answers from doctors on long term effects.I have figured it out myself.I guess they never had people to survive so long as to do a study.My daughters short term memory is getting worse her cognition is bad and she can't organize& lacks common sense.i truly believe that the radiation has killed the bad cells ,but really damaged the good cells.I am afraid that the fatigue will always be with you.sometimes you have to push yourself.you should join a brain tumor support group.We tried it for 6 months but she just won't help herself.They will tell you that this is your new normal

    long term effects
    I believe the long term effects depend on the individual. It seems that you are strong and trying to fight through this. Stay strong! My husband was diagnosed with AA3 in Aug 02 and has remained one of those that does not help himself. You are driven and I think you will get through the side effects don't give up push through. The alternative is not living.
  • rebbmc
    rebbmc Member Posts: 1
    #5
    janmiz said:

    long term effects
    My daughter Debbie wiil be an 8 yr.survivor of anaplastic astrocytoma.She still suffers fatigue.she has had surgery ,chemo & radiation the same as you.I have never got any answers from doctors on long term effects.I have figured it out myself.I guess they never had people to survive so long as to do a study.My daughters short term memory is getting worse her cognition is bad and she can't organize& lacks common sense.i truly believe that the radiation has killed the bad cells ,but really damaged the good cells.I am afraid that the fatigue will always be with you.sometimes you have to push yourself.you should join a brain tumor support group.We tried it for 6 months but she just won't help herself.They will tell you that this is your new normal

    My daughter
    I was wondering how old your daughter is. My daughter is 23 and was diagnosed with a Grade II Astrocytoma tumor in January of this year. She just went back to work a couple of weeks ago and we are really confused as to what to expect. They only biopsed the tumor and are waiting to do chemo and radiation until or if they have to. Claire is very concerned about having chemo/radiation and the quality of life. It seems that is the biggest question with cancer, is helping them retain a quality of life with or without treatment. I am so happy that your daughter has survived 8 yrs. I wish her many more.
  • cindysuetoyou
    cindysuetoyou Member Posts: 513
    #6
    rebbmc said:

    My daughter
    I was wondering how old your daughter is. My daughter is 23 and was diagnosed with a Grade II Astrocytoma tumor in January of this year. She just went back to work a couple of weeks ago and we are really confused as to what to expect. They only biopsed the tumor and are waiting to do chemo and radiation until or if they have to. Claire is very concerned about having chemo/radiation and the quality of life. It seems that is the biggest question with cancer, is helping them retain a quality of life with or without treatment. I am so happy that your daughter has survived 8 yrs. I wish her many more.

    My son's experience
    My son was diagnosed with an anaplastic oligodendroglioma (grade III) tumor in May of 09. He had a total resection, and as soon as he healed from that, he had 6 weeks of radiation and chemo. It was hard. But as far as the quality of life.....it is so worth it. My son says he doesn't remember stuff like he used to, and he's tired, and he gets stomach aches. Our oncologist told us that it takes the brain a few years to recover from what he's been through. He is still doing chemo....he takes Temodar for 5 days, then 23 days off, then back on for 5 days. Temodar is an easier-tolerated chemo, but it does make my son feel sick and it gives him headaches and insomnia, but it's much easier than a lot of other chemos. It's taken at home, in pill form. My son still does stuff when he's taking Temodar, but he doesn't feel too good for those 5 days, and for a few more days after he's done with the treatment. If you met my son, you would never know that he'd been so sick. I just got home from watching him play in a basketball game. He's back at work, his hair is all grown back in, he's out and about, doing things with his friends and our family, and he looks great. He feels pretty good most of the time, just not when he takes the Temodar.

    I don't know very much about brain tumors....we are still so new to this ourselves...but I hope that hearing about our experience will help to answer some of your questions.

    Love and blessings,
    Cindy
  • The 4 Walls
    The 4 Walls Member Posts: 1
    #7
    Lifeistooshort said:

    long term effects
    I believe the long term effects depend on the individual. It seems that you are strong and trying to fight through this. Stay strong! My husband was diagnosed with AA3 in Aug 02 and has remained one of those that does not help himself. You are driven and I think you will get through the side effects don't give up push through. The alternative is not living.

    I had my tumor removed Dec.
    I had my tumor removed Dec. 29 2008. I went thru. the same treatment radiation for 6 weeks, temoday everday during that time & 7 months of Temodar 5 days every 23 days. I have scans now every 3 months which have all been clean. I realize that I am more fatigued than before but I push myself. I am 41 years old w/ 2 daughters that will be 21 & 18 this year as well I have an incredible supportive husband. I will not lay down & give in to the side effects of the treatment or cancer. I will stay strong & fight everyday because today I am alive & enjoying every beautiful moment. That in itself is worthy of gettin up & not being tired, somehow, someway.
  • Gerard6
    Gerard6 Member Posts: 6
    #8
    janmiz said:

    long term effects
    My daughter Debbie wiil be an 8 yr.survivor of anaplastic astrocytoma.She still suffers fatigue.she has had surgery ,chemo & radiation the same as you.I have never got any answers from doctors on long term effects.I have figured it out myself.I guess they never had people to survive so long as to do a study.My daughters short term memory is getting worse her cognition is bad and she can't organize& lacks common sense.i truly believe that the radiation has killed the bad cells ,but really damaged the good cells.I am afraid that the fatigue will always be with you.sometimes you have to push yourself.you should join a brain tumor support group.We tried it for 6 months but she just won't help herself.They will tell you that this is your new normal

    Long term effects.
    Hi I am also a 9yr survivor of Anaolastic Astrocytoma. Im afraid I have such simular proplems as your daughter. Rencently my memory is getting worse also my cognition. I think its true that not only does Radiation Therpy kill the bad cells but unfortunately good cells as well. Tell your daughter to stay positive, laugh as much as she can and will help to keep this BEAST from the door. God bless and best wishes to you all.

    I live in Australia and would just like to say thank you all for a wonderful site. Ger
  • kcgrace
    kcgrace Member Posts: 3
    #9
    Gerard6 said:

    Long term effects.
    Hi I am also a 9yr survivor of Anaolastic Astrocytoma. Im afraid I have such simular proplems as your daughter. Rencently my memory is getting worse also my cognition. I think its true that not only does Radiation Therpy kill the bad cells but unfortunately good cells as well. Tell your daughter to stay positive, laugh as much as she can and will help to keep this BEAST from the door. God bless and best wishes to you all.

    I live in Australia and would just like to say thank you all for a wonderful site. Ger

    23 year survivor of Astrocytoma Grade 2.5
    I was diagnosed when I was 34. Location - lt frontal lobe at the olfactory nerve. About the size of a pecan.Craniotomy with follow-up radiation- 60,000 rads of cobalt.The radiation was called focal-not full brain and it was to target the surrounding area primnarily affected by the tumor. My doctors told me because of the likelihood of reoccurrence-50% chance- I had maybe 5 years. As I look back I can tell you that the combination of a great medical team and faith is what I believe has made the difference.

    And as I read your survival stories (and each one of you is a survivor),I must praise your courage.You inspire me. I wish a message board like this had been available to me- because there was not a support group for brain cancer patients.It would have been really great to exchange information and have the comfort of other survivors.

    As I understand it- it takes the brain awhile to heal and everyone's process is different. I experienced some memory and social lapses- blurting things out,etc. It did eventually pass or everyone just got used to it.

    Ijust want to encourage all I can and hope my survivor journey can help someone else.

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