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Please help.. Survival date

Tracy724
Posts: 3
Joined: Aug 2011

Hi. My husband Of one year was diagnosed w an anasplastic astrocytoma grade 3 in July. He has had partial resection , gliadel placement , steroids and temadur now. He's 41 and we are optimistic but have read probably too much. Is there ANYONE with info with long standing survival numbers . Please tell me what you have seen. Also, radiation is next after the incision/ graft is healed. What can we expect. Also we were in the process of starting a family , not now..his survival is our focus but now I sort of feel like our dreams and future have been obliterated..
Thank you for any info u have

DevsDad
Posts: 6
Joined: Aug 2011

Hi Tracy,

I don't know the answer to your question, but I can sure empathise. My 17 yr old son was also just diagnosed with a brain tumor in July, and it has turned our whole world upside down.

Wishing you the best,

Bill

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

My daughter who is 13 now was diagnosed with Anaplastic Astrocytoma 3 in March of 2010. It has been a long and tiresome road. I also have read alot of bad things about this cancer and it eventually drove me crazy, all the sad stories. I would have nightmares about her last breath and so on and so forth. I tortured myself. My daughters tumor was in her cerebellum, size of a golfball. She had a total resection on march 27,2010. MRI was done 3 days later and there was still some tumor, the next day, she had another crainiotomy. She recovered very well from them and went home after 1 week. She had 6 weeks of chemo and took temodar. She lost her hair where she had radiation and it still has not grown back. 3 months later, she had her 1st MRI since the last surgery and finishing her radiation treatments. The results showed that the tumor was growing back. From the size of the tumor, her doctor said that it was growing during the radiation treatments. She had her 3rd surgery the next day. 8 more grueling hours of waiting for the surgeon to come see me.
When I spoke with the doctor, they told me there was nothing more that they could do and that my daughter was going to DIE. I was so mad that I took her out of that doctors care and brought her to The Jimmy Fund Clinic/ Dana Farber in Boston, MA. She has been cancer free for 10 months now. Never stop hoping. :)

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

Hi:
My 18year old daughter was diagnosed with Anaplastic Astrocytoma 3 when she was 17 in Februay 2011. It was a nightmare, still is. I completely understand. She had surgery at Seattle Children's Hospital, radiation at the University of Washington. We are in the chemo phase of her treatment. The chemo will last a year. She gets so sick from the temodar, I don't know how she can physically last a year from this. I will tell you, whenever it feels overwhelming I pray and pray. My prayers get answered,there is some relief provided. We met a girl at the store that is a brain cancer survivor. It is so hard because it seems like the doctors don't have all of the answers. I have faith and believe in the power of prayer. Pray for healing and for guidance on your decisions. Recently CNN had information on the Vaccine Therapy, I wonder about that. It sounds like it is being done at Duke and San Fransisco. We are doing the standard treatment, infusion of Avastin and Irinotecan twice a month. The last infusion is coupled with temodar for five days. My daughter seems to tolerate the first infusion ok, the last one with temodar kicks her butt. There is also the Burnzynski Clinic in Katy, Texas. I don't know if that is legitimate. My friend found weird information about that on quackwatch. But a family physician in our town said she would take her daughter for an opinion. Right now we are going to keep with the standard unless it starts to not work. I see MD Anderson, Jimmy Fund and Duke mentioned on here a lot. We are going to try accupuncture for a nausea. We also see a naturalpath doctor who gives my daughter Curapro, which is good for cancer, maquiberry, which is good for the brain and glutamine. The nauturopath talks to our oncologist, so they confer on the meds. I think this is a good network to find out what is working or not. I send God's blessing to you and your family. Like the other Mom said, Never give up hope. We are fighting this diease and will not stop. Also, create a caringbridge site, it will lift you up during dark times.

JPoole's picture
JPoole
Posts: 4
Joined: Sep 2011

I was diagnosed with anasplastic astrocytoma in May of 2010 so I have been down the road that you are just starting. As for long term survival numbers, its hard to find up to date statistics. Most of what you find is old. There are stories out there of people outlasting the statistics by many years and still going.

I went through an operation followed by radiation and chemotherapy. I am currently on maintenance chemotherapy and I get an MRI every 2 months.

As far as what to expect with the radiation it made me very sick, especially towards the end. I was in a wheel chair for a while because it made me so weak. Some days it was hard to drive to the radiation place because I knew that it would make me sick but I just looked at it like - "This is the treatment that will kill the last cancer cell."

Things will get better. Hang in there.

James

PS. I am about the same age as your husband (43)

I_Promise's picture
I_Promise
Posts: 208
Joined: Aug 2011

Hi JPoole,

I was wondering how you were doing. My sister has the same diagnosis (she is 31 years old, diagnosed in August 2011 with anaplastic astrocytoma). We are just starting on this road. You are more than a year out. Did you resume your normal life? How often do you get MRIs? Which center do you go to? Any insight is always helpful. I hope that you are doing well, as well as before the diagnosis.

Julia

JPoole's picture
JPoole
Posts: 4
Joined: Sep 2011

Julia

Hi, I am 43 and I was diagnosed in May of 2010

My treatment seems to be the norm - Craniotomy, radiation and Temodar 5 days a week for a couple of months followed by Temodar 5 days a month. My oncologist tells me that as long as the Temodar is working and I am tolerating it well then we will continue the 5 days a month schedule for a total of 24 months. I will start cycle 14 next week.

My tumor was in the brain stem. I was lucky that the surgeon was able to remove the tumor given its location. The scans after radiation shows something left in the brain stem, the surgeon thinks that it is necrosis and the oncologist is unsure. Either way the treatment is the same. My operation was done in an operating room that has an MRI. The surgeon says that there was no tumor showing up at the end of the operation. With each additional scan the spot in my brain stem gets a little smaller.

I get an MRI every 2 months. My last MRI showed a new spot in the right frontal lobe. The Oncologist thinks that it is necrosis from the radiation. Also, I do not have any new symptoms. Apparently this sometimes shows up at a year to a year and a half out from radiation. I get an MRI and a PET this week so I should know for sure on Thursday.

It has been a long road. After my surgery I could not walk or swallow. I regained enough strength to start walking just in time for radiation. The radiation made me very tired and sick, especially at the end. I never minded it though. With each trip to the radiation facility I just kept telling my self that this is the treatment that would kill the last cancer cell. That kept me going. Things looked bad by the end of radiation though. I spent most of the time in a wheel chair because I was too weak/dizzy to stand. After radiation was complete I did regain my ability to swallow and I rarely use a wheel chair. My swallow is not perfect but I no longer need a feeding tube. I have a few other symptoms like low blood pressure ,dizziness, body temperature control, ... due to the tumor location .I have not returned to work but I live a pretty normal life.

My Oncologist is at Neuro-Oncology Associates located at Baylor University Medical Center at Dallas. Dr. Fink specializes in brain tumors. She is great. I feel lucky to have her.

By the way, I love your sisters blog. She seems like a really strong person. Her positive attitude will help her a lot. I know it did for me.

James

WillieJames
Posts: 2
Joined: Sep 2011

My heart goes out to you, my wife was just diagnosed with terminal cancer August 12th,2011.
She also has it in the lungs,liver,and spleen.
We have not had a chance to catch our breath since this started,just finished the 10th radiation for the brain tumor and are headed for Chemo? I have not even had time to read and find out what is in store for us.I am really worried for Her and feel helpless.
I hope for the best for you and your husband, you are not alone.We hope and pray for a miracle but we are trying to prepare for the storm at the same time.

Best Wishes

Willie James

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