The verdict for this week is ....

[peanutz]

My partner gets to stay on the trial for another 4 weeks until the next MRI. The scan from Monday looks promising although they spot something around 7mm in his front left temporal lobe which is a bit further away from the main tumour area. It's not conclusive what it is as the main area looks better and the swelling is better which means the drug works but then why there is this new little stranger. Let's hope it's nothing but my gut feeling says there is no such a thing as 'nothing' in this fight. Well, for now, just enjoy our lives until the next anxious few days of waiting for the scan result.

[SILLY]

I can only say that I wish the best results for the MRI.The 4 weeks of waiting will feel like a very long time . Yep,do what you can to stay happy .

[Dotty_and_Rex]

Oh gosh!what can I say..I have just put a blog up that 'kind of' relates to this...waiting for tests and results is such an awful time.I hope you can do something nice for you and your partner while you are waiting and be as positive as you can be. Great news the trial worked for the main area. Gently gently. Dotty

[peanutz]

I think GBM teaches me to live my life a bit more, cherish people around me and everyday that I have.

[rarsie]

Hi peanutz, Hoping all is well for you in 4 weeks time, we had my sons MRI on last friday saw a doctor dont think he was an oncology Doctor as he didnt even know what Temordol was. He said from what he could see there was no change, but he was such an idiot I dont trust his word, anyway lets hope he is right, go back in 3 mnths for MRI, keep taking Temordol rarsie

[peanutz]

Hi Rarsie, It's odd that the doctor didn't even know Temodar. Perhaps, he's a radiologist rather than an oncologist. Let's focus on the good scan that your son has for now :) Cheers!

[storm]

Hi Peanutz The spot sounds suspicous so probablely the following is not something you wish to hear Lorraine had an MRI scan yesterday morning then later saw the oncologist. The results from the scan is the tumour is contained however there is a new small growth and explains some further deteriation she has experienced with fatigue, cognition, memory and talking. Basically the effectiveness of the trial drug she has been on Avastin is now limited. The oncologist recommended entering into stage 2 of the trial which involves taking a chemo drug carboplatin. Pending a computer selection process this taking of carboplatin could be taken with or without Avastin There are some adverse effects from carboplatin, so whether it is worth loosing what quality of life is left for her to gain some more time..... She is considering options and whether to travel this road This is getting to the real scary part Emotionally I had a extreme rollercoaster of the last two days - its been magnified by another woman who we were getting to know and like in the same trial she died on Sunday Then today in a daze I get booked for speeding Hope your spot works out to be just a blip or fades away Hugs and love for your journey and all else who may read this

[peanutz]

Big Hug for you Storm!! I think we need it. Life with GBM is terrible. I really hate it that the chemo will work for some time and then stop working. It's the fear for the worst every so often for the scan result or how our partners feel ... and perhaps it's the fear of losing someone we love.

[storm]

Hi Nat Re loosing - yes its one step closer to her death, then its my grief and all that implies to me spoke again to the oncologist today to get clarity on the outcome - best guess is the drug should increase her life from 2 to 12 months (providing she does not adversely react to the chemo drug) and her quality of life should be better than without it. My bent is that its a appropriate way to go - However the final decision is for Lorraine and I try to be aware of not colouring her mind with my sway, of presenting a unbiased view (i have to read to her,constantly repeat what was said what I said, try to unravel any confusion, try to understand what she says - she talks and words are different to what she wants to say, sometimes she is not aware of what she said...she grows closer to a dementure like state) She is the one to endure the chemo drug and it is her life. Presently she has reasonable cognition on a good day during good minutes, the future will bring its changes and I will make those type of decisions for her, for us and for me. She is a remarkable woman pre and post this tumour she has the knowledge that she is loosing her conscious mind, her decision making, making sense of the world and how she approaches what has been presented. During confusion and forgetfulness she will struggle and gets frustrated for a short period, moves on. Despite her tumour she is more with the present than I, and more detached from the outcome. I flounder at times, although (so far) able to move through my emotions, and rammble She is my teacher. And I wonder of my journey into this lurking world Hugs for your journey Geoff