26 yr old Mom w/anaplastic astrocytoma has questions

barbie204
barbie204 Member Posts: 2
edited March 2014 in Brain Cancer #1
My daughter is the patient. She will soon start Temador and 6/week radiation treatment. Does anyone have any suggestions or helpful hints for any of us? We are really scared, but also optomistic...is this normal?

Comments

  • Unknown
    Unknown
    #2
    Hello Barbie
    The fear is certainly understandable and normal. One of the best things you can do is become educated about brain tumors. My mom found the American Brain Tumor Association very helpful. I was diagnosed with a grade III astrocytoma in October of 2001. After my first surgery I had 8 weeks of radiation. Because the first surgery and radiation did not dissolve the entire tumor, I opted for a second surgery. After the second surgery I began with the Temodar. I alternated between Temodar and CeeCeeNu for forty weeks. I have been taking Tomoxifen since ending the Temodar treatments. Stay positive and supportive and know that this difficult time will be overcome.
    Mike
  • katie0713
    katie0713 Member Posts: 9
    #3
    I am a 24 year old woman just diagnosed in January with oligodendroglioma Grade III with another diagnosis from a different clinic of glioblastoma multiforme. I had surgery in January and now I am taking Temodar and doing radiation. I am starting my third week this week. Don't be scared. We are all here to help each other and it is so great to know there is so many out there who care. Tell your daughter to stay strong and everything will be ok. I have been doing fine with the temodar. Just make sure it is on an EMPTY stomach. Stay active and don't change your life. It will help with the fatigue. I wish you and your family all the best.
  • TAremote
    TAremote Member Posts: 56 Member
    #4
    Barbie..
    I'm 53 yrs old and was diagnosed in July 2003 with grade 4 Glio Blastoma Multiform. And like all of us, I was scared when we found out about the tumor. I have had a resection in Aug, along with Glio wafers installed during the operation. On Sept 12th I started 6 weeks of radiation (temadar). Since then I have had 6 treatments of temadar. And my last two MRI's have shown no new growth of the tumor. I have not had any side effects from the temadar, but I have lost some of my sight in my left eye, short term memory, and cognitive thinking issues. My tumor is located on the occipitial lobe (vision). When we first found out about the tumor it was very hard on us, and the burden seemed to much to handle. So, I went to God and asked Him to take the burden, and I would stay here and take care of my family. Since then I have been fine, and try to reach out to others that are going through the same kinds of issues.
    I have stayed positive, and never once ask, why me. I say why not me. The hardest job that someone can have is being a caregiver. They always have to be guessing how we are feeling and they wonder what it is they are suppose to do. The most important thing a caregiver can do is, just be there. Supporting us helps more than you will ever know. By my wife just being here allows me to stay positive and not worry about her or my family. Keep God in your lives, and pray for strength and courage and healing daily.
    Never give up hope, and remember that if you feel like your Dr's are not providing you with answers you need, go get a second or third opinion.
    I hope that something I have said has helped you with this cancer thing.
    Stay Stong and Stand Tall.
    Please stay in touch
    God Bless
    Tom
  • jabojones
    jabojones Member Posts: 4
    #5
    Hey, I'm 28 yrs old and have just been disgnosed with a GBM. I had surgery in Feb. and I started on Temador and radiation at the begining of March
    It's not that bad. The fear of the unknown is the worst thing. We all need to stay as postive as we can. If her Dr has not already mentioned Zofran I would ask about it. I take it along with the Temador, it really helps. God bless!
  • BinaryXtreme
    BinaryXtreme Member Posts: 2
    #6
    I'm Jerry from Yakima Washington and I'm 35 years old. I was diagnosed with a grade 4 astrocytoma brain tumor in 1984. I was told I had a month to live, would spend the rest of my life in a wheelchair if I did happen to make it through surgery and post treatment. I was only 15 at the time and thought that it was over for me. Most neurologists told me that there was no hope and to go home and die peacefully. I was devistated, angry, confused, and just didn't understand why me. I'm writing this to you now. I found a great neurologist at University California San Francisco named Dr. Michael Edwards. Don't give up hope! Everyone reading this, please, realize how strong you are. I was out of the hospital 4 days after brain surgery and had 6 weeks of agonizing hyper fraction radiation after. I walk now and have been cancer free for almost 20 years now. On April 10th 2004 will be my 20th anniversary of my death day. I had my surgery that day and was given less than a %5 chance of even surviving surgery. %5! Just prior to surgery I mad a promise to myself. If cancer tries to end my life and take me from this Earth it's going to be bloody. Cause I'm not just going. I'm going to fight to the very end and never give up. It's all you can do, fight! Make your promise, get educated, find a great doctor and fight! My family and I managed to laugh everyday through it all. My hair fell out and I looked just horrible and we laughed. I had a spinal fusion in 1994 because the tumor weakened my spine and yet again I was facing paralysis and possible death and had to face 3 months in a halo. I fought again and won. Fight, be optomistic, laugh, and get an attitude! Promise yourself this and I hope you can live to tell your story in your future. You're not alone.


    What Cancer Cannot Do


    Cancer is so limited...

    It cannot cripple love
    It cannot shatter hope
    It cannot corrode faith
    It cannot destroy peace
    It cannot kill friendship
    It cannot suppress memories
    It cannot silence courage
    It cannot invade the soul
    It cannot steal eternal life
    It cannot conquer the spirit
  • Jeneva
    Jeneva Member Posts: 3
    #7
    I am going to be 30 next week and I had an anaplastic astrocytoma removed in September, 2003. I also went through radiation and have, and still am, taking Temodar. My original symptoms were weakness in my left leg and lack of coordination in my left leg. They went away after surgery but came back after radiation. That was the scariest for me but it is only caused by swelling from radiation and could take awhile for it to go down and for me to be back to perfect again. Other than that, things have gone extremely well for me. My doctors always tell me that because I'm a woman who is under 40 and who is healthy otherwise, I have every reason to believe that I can beat this thing. My advice is to keep a very positive attitude, seek out success stories, either from other people, books, websites, etc., and find a support group in the local area. I have not missed a support group meeting since I was diagnosed because I love being able to talk to people who know what I am going through. Hang in there and just give your child unconditional love and support. My mom has been my rock through all of this. She laughs with me, she cries with me, and most importantly, she just loves me.
  • Unknown
    Unknown
    #8
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