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natmomwithgbm's Message Board Messages

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Hi;

My mom was diagnosed at 58 with GBM 4 Nov. 2011. I live in Canada. Not sure where you live but the grants/programs we have are likely different. I'm really sorry your father and family have been affected by this disease. It's an emotional roller coaster ride. It sounds like your dad is actually in the best position in terms of longevity and functionality. Total resection is good. What are the next steps? If he can be treated at a facility with an actual brain tumour program or at brain tumour center that would be best. Where was his tumour?

I'm so very sorry for your loss. My mom has a brain tumour she has been fighting for over a year now. Same thing here-2 surgeries so far, Radiation, Temodal, Avastin and now an oral chemo. Any advice you could give me would be appreciated. My mom jusgt turned 60 and is too young to leave us!!!

I am so sorry. What a horrible situation. I often wonder when I should start looking into palliative/hospice care for my mom. What a tough decision. I will pray for you and your family.

Her last dose of Decadron was a week ago but her oral chemo was 3 weeks ago. After the chemo she was pretty fatigued for a few days but rebounded and was fine up until last week

I have read many of the postings on this site and am humbled and taken aback by how many lives GBM affects. I've been a RN for 17 years and workied mainly in a Med/Surg ICU. Neuro was never my forte. I had very little knowledge and understanding about brain tumours. My mom started having headaches in mid Oct. 2011. No other real symptoms to speak of. She's a hair stylist and owns her own business and we originally thought the headaches were due to a possile pinched nerve in her neck causing radiating pain to the right side of her head. After two weeks of these headaches that were getting progressively worse I finally talked her into meeting me in the ER at the hospital I work at for assessment. Nov. 3 2011 is the day that our whole world changed in a heartbeat.

We live in a small community that does not offer Neuro services. We were fortunate to find one of the best Neurosurgeons in Canada to accept my mother under his care. She had a total resection of a parietal/temporal GBM,  which was done at St. Micheals Hospital in Toronto, Ontario. Without a doubt this is one of the best hospitals in Canada and not because of it's bricks and morter (as it is quite antiquated) but because of the professionals who work there. What an amazing group of people. She was then referred to the Pencer Brain Tumour Center in Toronto for f/u radiation and chemo. Another fantastic organization with amazing staff members. She tolerated the 6 weeks of Temodal and rad really well. No issues at all. She stayed on the Temodal until Aug. 2012, when she had tumour recurrance, unfortunately she was vacationing in Italy when this happened. She returned to Canada after a few days in a hospital in Italy and had a second resection (same hospital and NS). She then began Avastin infusions every two weeks. That worked well untill Dec. 2012, when her MRI showed disease progression. She is now on oral chemo (1 pill every 6 weeks). We have just weaned her off her Decadron (very, very slowly) as advised by her NS and NO. Her last dose was a week ago and she has had increased fatigue, SOB, disorientation and her functional staus has decreased significantly. She says she feels really shakey and unsteady. We don't see her NO until March 7. Can this be Decadron withdrawal or could she be having progression of disease. Her last MRI a fews ago was reported as really good.

What a rollar coaster this gross disease is. I truelly hate it and what it has done to my family. My mom just celebrated her 60th BDay

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About natmomwithgbm

Caregiver, Nurse
Brain Cancer
Clinical Trials and Research, Emotional Support, Side Effects

My 58 year old mother was diagnosed with GBM in November 2011. She has had two crainiotomies with total resection, radiation, Temodol therapy, Avastin and is now on a chemo agent.

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