Please help.. Survival date

Hi Tracy,
I don't know the
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

DevsDad said:

Hi Tracy,
I don't know the
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

Always keep hoping
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.

Brain Cancer
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

I_Promise said:

Hi James
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

Doing Well
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