Astrocytoma Grade III-Survivor

Hello Garryze,

My mom was diagose with anaplastic astrocytoma on June 30, 2016. Like you, she had the surgery to remove as much as they could get. In October she went through 6 weeks of radiation. The radiation itself did not due much to her physically except for hair loss and sensitive skin on her scalp. However, she was in great shape which helped. Others also going through the same radiation had more issues with being tired all the time the more out of shape they were at the beginning. Once the radiation is over, the sensitive skin grew less sensitive with time especially as her hair is starting to grow back. They waited a month after radiation before they began treament with chemo (Temedor). She has been on that for a little over two months now with 5 days on and 28 days off schedule. As they continue to up her dose, it has started to affect her energy levels more along with some nautiousness but neither has been too bad yet. She just had her first followup MRI post radiation treatment and the cancer is still at bay for now and the hole where it was continues to shrink. I hope this gives you an idea of what to expect.

Laura,

I can't wait to read the book. I truly did not know anything about brain tumors until my daughter was diagnosed. We live in West Virgina. I have checked around and there is no support group for brain cancer victims in the area. I was initally shocked to find out about her cancer (really did not even know what astrocytoma was) and the need to talk about it with someone who has been there was overwhelming. What grade astrocytoma did your son have? I am so glad it has not recurred. Amanda (my daughter) had her first mri since surgery and it was clean. She still has memory problems as well as fatigue but she was very lucky not to have more serious effects from the surgery. I don't like this waiting game but I guess that is all we can do.....her next mri is the week before Thanksgiving. Being a mother yourself, I know what you have been through with Michael. It is a non stop worry even when you are sleeping. Amanda is a single parent. Her daughter is 5. I help her with Hannah. She did go back to work and is trying to lead a normal life but she is scared.
Take care and good luck to you and your family. I will be buying your book when available.

Diane (momfor2)

Laura,

My son was diagnosed with stage III /giloblastoma. He enjoyed 3 years of stability. Can you tell me if your son had any relapes. Charlie had 2 resection back to back and then a shunt put in. He had radiation /chemo / temadar. He suffers from poor vision and cognative effects. I really am trying to find people who have had relapes.

Linda

Hi Laura, how are you?

My name is Margaret I live in Brazil, I read his statement on a website and would like to speak to you. I read that his son had a brain tumor and thank God he is fine .. He improved the aftereffects of a stroke?

My son operated a grade two astrocytoma in March this year, he stayed with sequels, this was without vision and with hormonal problems.
I'm very nervous, sad, looks like I'm dreaming ...

I'm using Google translator, I'm sorry because I can not speak English.

Do you have MySpace or Facebook?

May God protect your child, and if possible news.

kisses

Margarete

his tumor was near the thalamus and inoperable. he also has experienced numbness on his right side which has never gone away. he had chemo and radiation. the chemo went on for 3 years. actually he had 3 different ones. first tremodar which did not work for him, then he went into an experimental drug which shrunk the tumor but caused too many side effects. his last course of chemo was procarbazine and ccnu. he also has double vision but, had he not been diagnosed with parkinsons' disease he would have continued on with being fairly active. the two diagnoses have no relationship to one another so do not worry about that. i hope you are going to a teaching hospital. also, if you should experience shortness off breath get to the nearest hospital not to alarm you ,but brain tumor patients can get blood clots from i believe, the chemo. my husband got clots in his lungs and they put a filter in the chest somewhere and that was the end of that problem. best of luck. also, i am assuming that this is a primary tumor not a secondary and that is a good thing(if there is such a thing)! i am sure that you know this but just remember they are only treating one cancer not many. it is rare that brain cancer spreads anywhere else in the body but other cancer can spread to the brain. also, get physical, speech and psycho therapy it will help.

Hi from Australia Michelle.

My wife of 24 years (aged 49) was also recently diagnosed with a Anaplastic Astrocytoma Stage 3. Heathers first seizure was October 10 2009 from out of the blue. Two days later surgery removed 80% of the tumour and we are now beginning week 6 of radiation treatment coupled with daily Temodal chemotherapy medication. As we all do, I scour the internet for answers solutions, alternate treatment options and other life experiences.
The trouble I have is that Heather is a great person, fantastic mother, good christian, a wonderful wife and friend, so I am in awe as to why, if there is a God, did this happen to such a fine person?
I dont doubt belief has healing power, but my faith is questioned at this point.

Heathers treatment seems to follow the sames lines as all AA/3 patients around the world. Surgery, 6 weeks of radiation, chemo then wait? Luckily Heathers surgery was a 100% success, in that there were no side effects, and luckily she is taking all the treatment on the chin. Heather has lost a lot of hair from the radiation, is listless some days, and has a few mild reactions to the Dilantin and the Dexmothzone. Otherwise she has maintained working (three days per week school hours)and hopefully will enjoy a good family Christmas.

No one really has spoken of life expectancy, and we haven't asked, but it is always there hanging over our heads. We have two teenage children, a daughter at University and a son finishing high school. Do we set short term goals or long term? There is no one who can advise us of this, they all just say we will see when the radiation treatment is finished and a few weeks after that we ill do more MRI's.

Any answers/advice would be appreciated.

Michael
Brisbane
Australia.