Hi, I was diagnosed with GBM (astrocytoma IV). Different to your tumour. I have been on Temozolomide (Temodal). I had a craniotomy where they removed (well most of it) a 4-5cm tumour. Then 6 weeks Chemo and Rad. Now up to 3 month of chemo (5 days every 23). Side effects are not too bad as long as I take my anti-nausea tabs. Chemo has shattered my bloods, platelets and neutrophils(?spelling)falling, so get pretty tired. Have also had hives and mouth ulcers.
Note your post March......hope you are doing well.
Sending you positive thoughts.
... View more
Hi, I was diagnosed with Glioblastoma (GBM)Dec 2012. Diagnosis and prognosis was a huge shock as I have always been fit, active and healthy. It was the most horrific Christmas for my family and friends. The whole experience was so surreal, "this happens to other people not us". We are now coming to terms with our situation through the support and positive attitude of family, friends and medical staff.
I have two daughters and a son (24,22 & 21). I am feeling pretty lonely as my husband works O/S for 16 days a month and very very frustrated as Drs advised me not to drive (even tho I have never had any seizures). Public transport isn't regular where I live (sml beach side community in North Queensland). I have always been very independent and love to travel. I find it difficult to ask. Some days I feel like I am under house arrest!
I am now six months into treatment. Completed WHO protocol Craniotomy, with Chemo and Rad for 6 wks. Now up to 3rd mth of chemo regime. Doing Ok.
Would love to share experiences and thoughts with others with the same diagnosis.
My Goal: Rebook that trip to Cambodia!
... View more
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.