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Grade III Astrocytoma inoperable - help please

Agnessa
Posts: 3
Joined: Nov 2012

Hello,
My husband was diagnosed with grade 3 astrocytoma and it is inoperable. It has spread throughout the brain, the two hemispheres and the corpus collosum. He is due to start RT and chemo. He has been unresponsive to steroids so far.

Can someone please give me hope that we can beat this. Do people make it without surgery? All the prognoses I hear or read about are awful, I searched the Internet and all I see is grim statistics. Especially for a tumor this size...
He has deteriorated rapidly, can barely walk and his speech is almost gone. I just don't know if he can recover from these symptoms with treatment? How soon?
Any information or a personal story will help me, I want to keep my faith and I don't want to accept thatthis is fatal. I want to believe. Please help me.

Herbie39's picture
Herbie39
Posts: 4
Joined: Nov 2012

Hi Agnessa

Firstly really sorry to hear of your situation and thoughts and prayers are with you. In June of this year our 5 year old daughter Sophie was diagnosed with a Grade III Astrocytoma. It is a very rare Bilateral Thalamic tumour and is inoperable. I know every patient is different and every tumour is different but she flew threw her radiotherapy with no complications at all. Her chemo is ongoing and apart from some weight loss and lowered energy levels she is responding well.

Her first reassessment MRI was three weeks after initial treatment had finished and the tumour had shown a reduction of approx 40%. Her chemo is a 5 day out of 28 day course of oral Temozolomide and she is on a clinical trial involving fortnightly infusions of Bevacuzimab (Avastin). The prognosis is not good, 1-2 years with treatment but we live in hope. We also have her on homeopathic remedies (Ruta-6, Calphosphate, Bromelain, Chokeberry Extract) and are exploring faith healing and kinesiology.

All I can tell you is that we are dealing it with it on a day to day basis. Have hope, but be realistic. Hope is what you need, its what will get you through these times.....as will humour, whether you feel like it or not.

Every single person is different as is every tumour. Somebody said to me that Sophie's body made this tumour therefore it has the ability to unmake it.

I know words cannot help but I hope that you can draw something from my waffling. Have hope and faith. If you have a minute to spare take a look at www.kissypuppy.co.uk - its the site we set up for our daughter to raise awareness and keep people updated.

Stay strong - you're in our thoughts x

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

Hi :

My daughter is in a similar situation. Her reocurrence of AA3 is inoperable. They are radiating part of it but also given her Avastin every 3 weeks. She has lost her ability to speak and having severe swallowing issues. I do not know how she will handle this. Pray! I also think it is very important to go to a hospital that has experience with brain cancer.
We are working with University of Washington and Seattle Children's. I learn a lot by looking at this blog and reading about this illness,but in the end, even the experts don't have all of the answers. The fact that the doctors do not know is very hard to accept.

May God Bless you and comfort you. I pray a lot and during my darkest moments I read the bible. Read the bible until you find comfort. I wish I had some great advice, but I don't. I pray for all patients and their family members every night.

Edna and Sarah

leo1118
Posts: 3
Joined: Nov 2012

I am sorry about your husband, we are going through a similar problem right now. I am looking for answers as well, and all I can offer right now is support and letting you know you are not alone.
Keep your faith, stand strong and depend on your support system. My prayers are with you and your husband.

Agnessa
Posts: 3
Joined: Nov 2012

Thank you all who replied to my message in November! I wish you a Merry Christmas and may you and your loved ones stay healthy.

After my first post, my husband went on RT and Temodal. It has been four weeks and he started feeling some improvements. We are hopeful. We are considering alternative treatments as well. We are determined to fight this and stay positive.

I hope you and your families stay strong as well.

Caquigg46's picture
Caquigg46
Posts: 3
Joined: Feb 2013

I was diagnosed with a stage 2 low grade astrocytoma in 2007 and have had since at least 2005. It is inoperable because itis also diffuse and infiltrating. I used to read all the awful statistics, but know now to ignore and be positive. My tumor started growing in 2009 and I was on Temodar for a year. Ever since it has shrunk in size and now remains stable. It has been 8 years since they first found something on my brain and I feel much better than I did in 2005. Please, however, have your husband see a neuro psychologist. I always thought I was fine, however my personality was changing drastically and I made some terrible choices. If someone had told me how important it was to see a Neuro Psych early on to understand what can happen, it might have saved my 20 year marriage. I have been back to my old self for several years now, but unfortunately many people do not understand how a brain tumor affects your brain, especially the frontal lobe where it can change you where it is invisible to the eye. God bless you and your family! Annette Quigg

 

 

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