Search found 25 matches

by ashony
Tue Jul 08, 2014 2:48 pm
Forum: Personal stories
Topic: Lyn - my story - GBM IV
Replies: 17
Views: 28894

Re: Lyn - my story - GBM IV

lyn wrote:It's now March 2014 and I have survived five years with GBM ! MRIs continue every 6 months ! Keeping busy and very grateful !!
I'm so happy for you!
Thats the way! Keeping busy and being with loved ones makes things a little more normalized.
by ashony
Tue Jul 08, 2014 2:47 pm
Forum: Personal stories
Topic: Nicole's Journey & survival with GBM
Replies: 5
Views: 13096

Re: Nicole's Journey & survival with GBM

thank you for your kind words, Nicole is doing great and has just passed her 8th year of survival with GBM. She is totally med. free and lives a healthy life....she continues to have 6 monthly MRI which shoe no visible signs of tumour. Feel free to check out share /like our page and see her progres...
by ashony
Tue Jul 08, 2014 2:44 pm
Forum: General treatment discussion
Topic: Caring for someone with cancer
Replies: 14
Views: 21737

Re: Caring for someone with cancer

Certainly letting go through being cared for can help to alleviate stress. But at some point in hospital being told when to eat, drink and breath all the time wears thin. That's when its time to get out. I can definately agree. My partner has been in hospital for 1 year 2 months and is still there....
by ashony
Tue Jul 08, 2014 2:41 pm
Forum: General treatment discussion
Topic: Charles Teo and his work
Replies: 24
Views: 52946

Re: Charles Teo and his work

camexonda wrote:If you were recommended by your surgeon then you must go, If your surgeon suggest you some other solution then you do what your surgeon told you to do.
Sorry but I'm not sure I quite follow? Where do you mean I must go?
by ashony
Tue Jul 08, 2014 2:37 pm
Forum: Personal stories
Topic: This was so fast...
Replies: 34
Views: 47012

Re: This was so fast...

Thank you for sharing your touching story Jaytee. No don't think you were stupid at all, having hope is what gets us by day by day, what gets us through those incredibly difficult times. Please keep us updated. You are a very loving brother and she must be lucky to have you. I'm sure you will be a g...
by ashony
Tue Sep 03, 2013 11:15 am
Forum: Personal stories
Topic: THIRD TIME RECURRENCE
Replies: 3
Views: 10628

Re: THIRD TIME RECURRENCE

Thanks for sharing Sam, I'm sorry to hear that its recurred for your husband. Thats awful news. And yes the ripple effect it has on yourself and your kids is devastating. I am a carer for my partner/fiance. I'm sure you know that it has a huge toll on everyone involved. I commend you on staying posi...
by ashony
Wed Jul 31, 2013 9:35 pm
Forum: General treatment discussion
Topic: Caring for someone with cancer
Replies: 14
Views: 21737

Re:

marrie wrote:thanks for sharing those stories..

i thought i was alone.. i thought i was the only one caring for..

:)
Sometimes it definately feels like we're alone. But its nice to know there are others who care about their loved ones as much as me. :)
by ashony
Wed Jul 31, 2013 9:32 pm
Forum: General treatment discussion
Topic: Brain stem Tumour Astrocytoma and stereotactic radiation
Replies: 6
Views: 14811

Re: Brain stem Tumour Astrocytoma and stereotactic radiation

Hi wondering if anyone else has a brain stem tumour that is benign and has had radiation. Did it work? Due to location (6th/7th cranial nerve) surgery is not an option. I have a pilocytic astrocytoma WHO grade 1 that is multifocal as I have already had one removed completely from the Vagas nerve (4...
by ashony
Wed Jul 31, 2013 9:21 pm
Forum: General treatment discussion
Topic: Charles Teo and his work
Replies: 24
Views: 52946

Re: Charles Teo and his work

Hi Ashony did your partner end up having the surgery? I am new and have just seen this post. I hope all went ok if so. Did you send off to John Hopkins? I was considering the same as I had an Astrocytoma removed at RPA Sydney in Sept 2012 but unfortunately have another that is on nerve 6/7 so too h...
by ashony
Sat Mar 02, 2013 8:46 pm
Forum: General treatment discussion
Topic: Charles Teo and his work
Replies: 24
Views: 52946

Re: Charles Teo and his work

Thank you for your suggestions, ideas, and support. Well Charlie recommended surgery for us with around 40% chances of causing permanent damage and hastening quadraplegia. We are scared of those odds so we're still thinking about it. Actually we might send off our scans to john Hopkins hospital in A...
by ashony
Wed Feb 13, 2013 4:09 pm
Forum: Odds, Ends, Anectdotes, and Announcements
Topic: Sydney - Brain Tumour Support Group meeting April 21 2010
Replies: 3
Views: 17622

Re: Sydney - Brain Tumour Support Group meeting April 21 201

The Cancer Institute NSW will again host the annual Brain Tumour Support and Education Forum on Wednesday 1st May 2013 at The Menzies Hotel, Sydney to coincide with Brain Cancer Action Week. Featuring International guest speaker Dr James J. Vredenburgh,M.D., Medical Oncology, Haematology and Interna...
by ashony
Sat Feb 09, 2013 10:45 pm
Forum: Finding Supplements or Medication
Topic: Supplements to take
Replies: 6
Views: 22354

Re: Supplements to take

Thanks for that, Ive got him doing some of those + using the exercise bike. Although his knees are pretty shot and his calves have atrophied, I think if you dont use it, you lose it! Also, hes completely off the dex but the headaches persist (worst in the mornings). He just takes panadeine but anyon...
by ashony
Sat Feb 09, 2013 10:41 pm
Forum: Personal stories
Topic: Nicole's MRI results
Replies: 1
Views: 9723

Re: Nicole's MRI results

Thats great to hear! I hope the good news continues :")
by ashony
Sat Feb 09, 2013 10:37 pm
Forum: General treatment discussion
Topic: Charles Teo and his work
Replies: 24
Views: 52946

Re: Charles Teo and his work

Hmm, I think I will hold off then. GP recommenended Ron Granot in Sydney, but I dont think he will have much to offer and given his specializes in other areas, its probably not suitable. Update: anxiously waiting for appointment with charlie on the 19th. I'm much less nervous than previously and les...
by ashony
Sat Feb 09, 2013 3:19 am
Forum: General treatment discussion
Topic: Charles Teo and his work
Replies: 24
Views: 52946

Re: Charles Teo and his work

Quick question,

GP wants us to see a neurologist (doesnt specialize in tumors or anything) thinking that they may help with managing (with medications etc) my partners muscle stiffness and rigidity. Do you think hes worth seeing or just going with a neuro-oncologist?