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Anaplastic Astiocytoma Stage 3: keeping hope alive- A mothers perspective

glory1960
Posts: 7
Joined: Jun 2011

My son Gregorsen Eugene was diagnosed with Anaplastic Astiocytoma in February 2004 when he was just 23 years old. He had surgery to remove the canserous tumor in his brain. He then received aggresive rediation treatment for a month and a half. the radiation made him feel realy ill. at times he would experience intence headaches and threw up alot. Overall going through radiation process was very hard for my son. He then went through chemotherapy treatment for a year and six months. THe chemo left him very weak. we constantly had to take him back to the hospital after the chemothearpy treatments due to him throwing up. At the time the doctors gave my son 2-3 years to live. I am happy to report that seven years later my son, who is now 30 years old, is still alive and doing better. I am not gonna lie and say that everything is perfect. the cancer has left him with memory loss, difficulty reading and slowed his speech. However, the gift life is the most precious thing of all. To anyone suffering with this or any other form of cancer, i urge you to keep hope alive. keep praying and remember god works miracles.

momsworld's picture
momsworld
Posts: 135
Joined: May 2010

I'm so happy to hear your story about your son. My 13yr old daughter has AA3 and it has been 15 months since diagnosis. It seems more like 15 years though. I try to keep positive everyday but, being human doesn't allow it. I believe in the power of prayer and I believe that God will take care of my girl whether it is here on earth or in heaven. I hope that in 7 years I will be here to comfort someone who is just starting their journey as you are here now. I wish your son continued health :)

glory1960
Posts: 7
Joined: Jun 2011

I am happy that you shared your story with me. its good to hear from others who are going through a similar situation. I know how hard it must be for you becuse it was the same for me. How is your daughter doing? i would like to pray for your daughter, so if you could tell me her name i would appreciate it. Trust me, with your support and gods help i am confident that your daughter continue to improve. Stay strong my freind.

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momsworld
Posts: 135
Joined: May 2010

I would appreciate your prayers for my daughter. Her name is Kasey. She is the most caring, generous, loving and strong person that I know. Right now my daughter is doing very well considering she takes 3 different chemos and a bunch of other meds. She is almost done with her treatments now. Her next MRI is in August. She is having some side effects from the chemos she is taking. She is losing her hair, which is hard for a 13 yr old but, the biggest worry for her is her lack of her menses. She is actually menopausal according to all the lab work. They have put her on the BC pill to raise her hormone levels. We do not know if this will be a permanent thing or not. She worries about having babies when she is older and I worry about getting her to the age where she can have a baby. I know my struggles of her having cancer, I can't even imagine what she is going through. Thanks and we will talk again :)

glory1960
Posts: 7
Joined: Jun 2011

I am so sorry for my late reply. Knowing that Kasey is almost done with chemo puts a smile on my face. I know seeing your child go through chemo,with all the terrible side effects, hurts to the point words cant describe. Regarding the menopause issue, the doctor had told my son that after 5 years he should be able to have kids. I dont know if you will get the same response but i pray that u do.I wish her good luck on the MRI because im hopeful it will be good news. We can never really know what they're going through, all we can do is support them through it all. When Kasey isnt feeling well dont be sad,make her laugh, show her that everything will be ok. God works miracles, never forget his power. Tell Kasey I said hello n I have been praying for u and her. Have a blessed day, hope to her from u soon.

Snoweerane
Posts: 10
Joined: May 2010

Hi glory1960 & others here. Its been awhile since I've been on mainly due to "denial". My daughter was diagnozed with AA3 brain cancer in August, 2009. She has had radiation for 6 1/2 wks then a high dosage of chemo from Sept 2009, until April 2011. She was taken off of chemo as she was too ill from it & was on it for too long. She goes to Seattle for follow up with her drs there but sees an oncologist who is about 4 hrs drive from where we live. She's been off chemo now for 3 1/2 months. She recently started to have headaches again, is weak yet, tires real quick and had a minor seizures (2) in one day last wk. so we are trying to get her back to her regular dr for another mri and other lab work. She stopped her menses however started them again about a month after being off chemo. I am wondering if any of you have heard of alternative medicine? vitamins and nutrition and whether they work or not versus chemo & radiation. I am worried that it returned after they stop chemo. I need to read from survivors that is why I'm here tonite. Thank you for giving me hope. God bless all of you!

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi:
We also receive treatment in Seattle. We still have many more months of chemo left before we are done. We go back to Seattle for an MRI in October.
We have consulted with a naturopath and be prescribed maqui berry which is supposed to be a supplement that is good for brain cancer and he also precribed Curapro which is also good for cancer and inflammation. We are however, do the chemotherapy combined with this information. I hope that helps somewhat. I think we are going to try accupuncture for the nauseau, I heard that helps.
I pray for all of the people suffering from this diease. God's blessings to you.

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Good Morning:
Thank you so much for sharing with us and giving us hope. My daughter is 17 and was diagnosed with the same cancer. She has had radiation and threw up a lot and now has one year of chemo. After her chemo she cannot do anything for a week and throws up even more with the chemo. I just want her to live! I am so happy everytime I hear there are survivors. We keep praying and we will. Have a wonderful time with your son and family every day. God Bless you.

glory1960
Posts: 7
Joined: Jun 2011

It was a pleasure to hear about your daughter. i am glad that my sons winning battle against this cancer gave you hope. remember Cancer is not a death sentence. keep praying and i will pray as well for your daughters continued strength. How is your daughter doing today?

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi Glory1960:

Thank you for asking about Sarah. I will tell you her name so you can pray for her. Sarah is the sweetest girl and just beautiful to boot! She had a good day today, but she is wiped out. She did not throw up at all and was able to go to the store with me. Going to the store can be really hard on her, so I was so happy to get her out and about. Thank for asking and sharing your hope. It keeps all of us Mom's going. May God continue to bless you and your son. :)

glory1960
Posts: 7
Joined: Jun 2011

Good afternoon, im sorry i took a while to reply to you. I was so happy to hear that Sarah was able to go to the store with you,i know that made your day. Im sure there will be many more happy days to come. The side effects of the chemo should stop as soon as treatment stops.I pray twice a day for her in the mornings and at night. Tell Sarah when she prays ask god to put her in the palm of his most precious hand.God will take good care of her dont worry. As quoted in a bible verse "trust in him and everything will be alright". I will continue to keep u in my prayers n thoughts. Take care my friend and have a blessed day. Bye for now.

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi Glory1960:

thanks for praying for Sarah and sharing. Finally, our first good news. We just had an MRI and it showed no growth and no change. We were elated! Thanks be to God! We are so thankful. I want to share the good news. We still have a long, long, way to go, almost a year of chemo, but everything little bit helps. God Bless.

glory1960
Posts: 7
Joined: Jun 2011

I was pleased to hear that the MRI results came back with good news.I pray that future MRI's will bring u better n better news as Sarah continues to progress.My son wasn't feeling to good these past weeks, he has had minor headches. His next MRI is in December, so I ask that u keep him in your prayers as well. Be sure to keep me updated on how Sarah's doing.May god be with you and your family.

SP24
Posts: 3
Joined: Apr 2011

Hi,

I am 24yrs old and was diagnosed with a G3 Anaplastic Astrocytoma last October. So far my post treatment MRIs have looked good, and it is really encouraging to hear that some people are doing so well even after many years. Thanks for the hope!

Sophie

Debbie1014
Posts: 1
Joined: Aug 2011

Hi I am new to this blog. I was always scared to read information regarding AA3 so I have stayed off the computer.I don't know why I got on tonight. I will be 47 in October. I was diagnosed with AA3 when I was 43., thought my life was over. However, obviously it wasn't I have 3 tumors and are in operable. I too, went though chemo and radiation. For me radiation was the worse....it was like having the worst hangover and knowing I wasn't going to feel better the next day. I have to teenage girls. I think teenager says it all! I also was going through a divorce when I was first diagnosed. The girls don't want to talk to me regarding the cancer and get very frustrated with me because I've lost hearing do to radiation and I say what a lot They think I don't listen to them and I'm stupid because I a tendency to forget wear I put things. Wish they would talk to me without getting mad at me. Any advice? They refuse counseling. Anyhow, I did run a 5k race during chemo thought that was going to kill me! I've continued to play tennis. After my seizure I couldn't hit the ball when I served. It was frustrating , particularly because I competed for over 10 years. Every 3 months I go to the National Institute od Health in Bethesda Maryland. I am in a free study and I highly recommend NIH. I will gladly send information if interested. I'm sorry if I have gone on and on. I believe keeping a scenes of humor,laughing and keeping your body moving (stretching) can really help. I don't take vitamins (bad me) but do drink Essies Tea when I remember lol!

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi:
My heart goes out to you having all of your struggles in addition to your tumors. Lift your troubles to God and lift your daughters as well asking that they might develop an understanding. My daughter has AA3 and her sister and younger brother have not been very understanding. Also, her friends don't visit much any more.
It is a very difficult illness to battle. I must say I am quite impressed that you ran a race on chemo. I enjoy running. What has the NIH done for you?
We are doing Avastin combined with Irinetecan, 2x a month and they Temodar for five days a month. We had one good MRI and we will repeat in October. Such a scary ride.
God's blessing to you and your daughters.

connsteele
Posts: 232
Joined: May 2011

Glad to hear about your son beating the odds. You said that even so, everything is not perfect. I'm wondering. Is he able to live independently? This is a big issue with our son. Is is 34 and we just moved him from Virginia, back in with us in Ohio. This has been really hard for him to accept, almost as much as the diagnosis (AAIII dx 4-13-11). How have you dealt with the independence issues?

glory1960
Posts: 7
Joined: Jun 2011

It is nice to hear from you. My son has never lived independently.The year that he was going to move out is the same year we found out about his cancer. The doctors have told me that he should not live on his own, they believe it is best because he forgets things and also in case he was to have a seizure.My son,who is now 30, has come to accept that it is better that he lives with me. At first it will be hard for your son to adjust but im sure he will soon realize that its the best thing for him.

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