Hi, I am a new comer to this site, previously my husband had used it, but is not well enough to at present. I am his wife of 17 yrs and he was first diagnosed with GBM in the occipital lobe in August 2009. The surgeon only biopsied it, did not remove as said it was a risky area...had no bedside manner or empathy. Just told us the results said go and get your affairs in order, you will not make christmas. We walked out of that hospital with grief and disbelief but a fighting attitude. He had 6 wks of radiation and after 9months of temodal called it quits as he felt he was being poisoned too much. We both spent time at a health retreat on the sunshine coast, great detox and relaxation. We went and saw experienced bio dentist and had amalgams and my husbands root canal teeth removed. Over the next 2 yrs his health improved and with some alternate therapies the tumour shrunk away...all doctors were amazed. Booooom !!! April this year at a routine MRI (no symptoms) a new growth was found in the left frontal lobe...ended up being 2 after debate about swelling/radiation effect. Was GBM surrounded by lower grade II glioma. So the roller coaster starts again....we ar starting radium again on monday along with chemo. They are treating it as his first GBM with the same treatment because unusually it is so far away from the original it is out of the last radiation zone....not keen on the treatment after all the research I have done over the last couple of years, but between conventional and alternative you do not totally know what effect each is having. We have 3 teenagers, who have been wonderful, however along with myself are not coping with the personality changes associated with where this one is. I find I am a referee, carer, mum, alienated wife and nothing could have prepared me for the road we are travelling at the moment. My hubby remains positive he can beat this one also so we will begin to fight the beast again. Our strong belief in God gives hope...thinking of all the other families/couples/singles out there going through this awful experience.
This is interesting! My partner is keen on complementary therapy but I feel we should wait until all the conventional one isn't an option any longer. What I learnt in the past few months is, there is GBM and there is worse type of GBM. I guess it's more about the match of your GBM and the drug you get. In my partner's case, his GBM hasn't found the other half yet. I hope Avastin will be it.
We felt the alternate therapy helped boost my hubbies immune system whilst he was having the nasty stuff...you know he has never had a cold or flu in 5 years despite the kids getting odd wogs..wcc and other blood never out of wack whilst on chemo and radium..hoping we can do the same this time, I have found you must go wiyh your gut feeling on stuff...you get so much information you just need to filter out what suits you and run with it...thats my experience anyway....from the hours and hours of research I have done on GBM's over last 2 1/2 years feels sometimes I am more informed than the doctors after all they are just focused on what they have learnt where those of us that search with an open mind find all the nitty gritty stuff!!
