soccermom2 Member Posts: 1
edited March 2014 in Brain Cancer #1
My husband who was diagnosed ten years ago with an oligodendroglioma was in remission up until this past January. He was diagnosed with an astrocytoma graded between a 2 & 3. The doctors say that since he has had two surgeries and extensive radiation that he can't have anymore. All they can give him is chemo again. He is taking Accutane to slow down the growth. He has been very tired, lethargic and has no ambition. He is actually not taking the accutane like he should. I was wondering if you could give any stories or info concerning his type of tumor, prognosis, and coping strategies. Please. I am his wife and am going crazy with all of this!!


  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member

    You may want to contact others on this board through the CSN internal email system that have had oligodendroglioma. You can also do a search of the Personal Web Pages (found on the left hand side of this page). If you find someone with a similar situation you can contact them through the CSN email system.

    You may also be interested in contacting the American Cancer Society's National Cancer Information Center. Cancer Information Specialists can assist you with medical information and resources. They can be reached 24 hours a day 1-800-227-2345 or by clicking on the "Contact ACS" link at the top of the page.

    I wish your husband well on his treatment.

    Take care and be well,

    CSN Dana
  • shornstra
    shornstra Member Posts: 2

    My husband was diagnosed with a grade 2-4 astrocytoma about 3.5 years ago. It is inoperable. He had radiation and the tumor shrunk. Since then, he has not had any new growth. He has a port "installed" for when he needs chemotherapy. He has seizures now, usually at night in his sleep. He hasn't driven a car in over a year. He works full time.

    Living with it has been very difficult for both of us. He does not follow all the doctor's orders. He was in denial about his seizures. We have a strong marriage, but at times, he is angry with me because he can't do all the things he wants to do. He was sure he really wasn't having seizures until the neurologist laid it on the line and told him to quit denying it. It is really hard.

    His prognosis is that he will live 2 - 5 years most likely. I think we found out that about 1% live longer than 5 years and he says he will be in that 1%! I wish his actions backed up his words!

    I talk about it with my family. His family is also in denial. They don't see his symptoms (seizures, word aphasia, short term memory loss) so they don't think that there's a problem.

    I go to all doctor's appointments. I make sure I communicate with them. I tell them my observations, my fears. I have learned that the docs and my husband respond to me when I am very specific about time, place and situation when I describe behavior that isn't right. They give me good information and reinforcement in the face of strong denial from his family. He and I are learning to trust each other as never before.

    Once I learned to record time and dates of behavior, the doctors could really diagnose what was happening to him. We have learned through his neurologist that his medicine dosage was not optimal! She has been changing it over time and experimenting a little. The results have been dramatic! His word aphasia has all but disappeared and his short term memory is back.

    What I have learned in these past couple of years: Other people, even family, do not know what is happening and cannot be the judge. Sometimes, even the patient doesn't see it. I have to be aware, trust my own judgement and communicate clearly and responsibly. Even if it scares the person I love most and makes him angry. It helps him have a better quality of life.