Grade III Astrocytoma inoperable - help please

Hi Agnessa
Firstly really
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

Grade lll astrocytoma inoperable
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 said:

Thank you all who replied to

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.

Astrocytoma

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

 

 

Agnessa said:

Thank you all who replied to

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.

UPDATE?

Hello, I read about your husband's diagnosis on the brain cancer board. My best friend has inoperable AAII. I would like to know how you and your husband are doing? I pray that this message finds you both well!