https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8598#M451 Hi Cathy, I couln't agree with you more, your positive outlook, like my daughter will see you get to 60 and beyond. Our daughter was diagnosed in Jan.2006 with a GBM and to date she is doing great. Cheers and never give up hope. Thu, 24 May 2012 07:21:00 GMT femme 2012-05-24T07:21:00Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8577#M430 My 28 year ols son has a gr4 brain tumor has anybody able to share with me Mon, 26 Mar 2012 04:16:23 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8577#M430 rarsie 2012-03-26T04:16:23Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8578#M431 how do i make friends????? help Mon, 26 Mar 2012 04:19:08 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8578#M431 rarsie 2012-03-26T04:19:08Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8579#M432 hey there, im a younger member but am supporting a partner with cancer im 25.. if you need any advice here to help.. how is your son coping with the news? xo Mon, 26 Mar 2012 08:14:15 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8579#M432 maddie86 2012-03-26T08:14:15Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8580#M433 Hi Rarsie, this is an amazing site with so many beautiful amazing people,It helped me so much in the past, I was caring for my courageous father who had head & neck cancer.Chat soon With (((HUGS))) Alison Mon, 26 Mar 2012 11:13:25 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8580#M433 Sunshine006au 2012-03-26T11:13:25Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8581#M434 Hi Rarsie, Not sure what GR4 is but my partner has GBM4 - dx early Aug'12. I'm more than happy to share my experience. Take care Fri, 30 Mar 2012 08:00:55 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8581#M434 peanutz 2012-03-30T08:00:55Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8582#M435 Hi thanks for joining in to my message, my son has this idea that he will be around till he is sixty, I know that people believe in been positive, but I believe in been realistic, not that I share that with him, What sort of cancer does your partner have Sat, 31 Mar 2012 23:06:45 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8582#M435 rarsie 2012-03-31T23:06:45Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8583#M436 Hi thanks for joining in to my message, my son has this idea that he will be around till he is sixty, I know that people believe in been positive, but I believe in been realistic, not that I share that with him, What sort of cancer does your partner have Sat, 31 Mar 2012 23:07:00 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8583#M436 rarsie 2012-03-31T23:07:00Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8584#M437 Hi Rarsie, GBM4 (Glioblastoma Multiforme Grave 4) is also brain cancer. My partner's tumour has recently grown back after only 4 rounds of Temodar. So things aren't looking good for us. Fingers cross for a clinical trial that he's likely to participate. The screening process will finish next week and if all goes well, he will be the 3rd guinea pig in the world. @_@ Sat, 31 Mar 2012 23:42:05 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8584#M437 peanutz 2012-03-31T23:42:05Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8585#M438 GBM GlioBlastoma Multiforme, has many forms/grades with grade 4 being the most aggressive of the four. It forms in the Glio Cells in the brain. The younger the person the better the results. It has been indicated in paperwork that it grade 4 GBM tends to happen more often in males between the age of 40 to 75 years of age. My husband was not quite 60 when we found out that he has a GBM (we had sent him to hospital with a suspected stroke due to drop in facial muscles). He had surgery to remove a 4 by 3cm tumour from right side frontal lobe. Within 2 months a second tumour started to grow on left side frontal lobe which stopped growing when the radiation (was in the line of fire of the radiation when specialists were radiating the remained of the tumour removed) and chemo started. We continued with MRI' every two months and in March this year, it was found that a third tumour (left side temporal lobe) has grown to over 3cm and after three weeks of phone tag and running around we have been informed that surgery will not be done on this tumour due to affects of surgery. So now we only have raditation and a possibility of chemo, we will know later this month. It has been an interesting ride through cancer, I have learnt so much, I also have found it sad due to watching the decline in my husbands health. Having a positive attitude, getting out there to enjoy life, take many photo', set up a network of family and friends all help in times like these. Sat, 07 Apr 2012 01:01:30 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8585#M438 Groenevelt68 2012-04-07T01:01:30Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8586#M439 Hi Rarsie - welcome to the group that none of us signed up for ! That being said at times this forum has been my sanity. My husband has been battling his GBM 4 for 2 years this month - he too talks about being around for the next 20, he is 49 years old. I go to every medical appt with him and often have a list of questions I'm not afraid to ask. We are lucky in that when David was strong enough he returned to work in a somewhat limited capacity & I truly believe this often gives him a reason to get going each day. We gave had recurrence of tumour & had stereotactic radiation while we are continuing towards our 18th dose of temodal. This our oncologists suggests will be our last dose this month as his body needs the rest - then another scan in May. We seem to live our life in 12 week cycles between MRIs. It is hard of that there is no doubt and I personally often hate every moment but then tomorrow is another day. It's either us planning our lives where we can or letting the cancer call the shots - not while I can help it ! We are even away on holidays at the moment with our boys - making good memories is a way I look at it . Back to the oncologist on the 20th which is back to reality - even though we have the most aggressive of brain tumours (I say we because we are all effected) in some ways we have been so fortunate with what we have been able to achieve in the last 2 years. I am the organizer in the family & that's what I keep doing - just to keep us going & to have something to look forward too. I do understand though that this won't last forever - sometimes I would like to know how long we have though. Plz stay in touch - vent, get angree, ask questions - anything that feels right - you wont be judged here. Nite Sun, 08 Apr 2012 14:27:55 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8586#M439 Smiley 2012-04-08T14:27:55Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8587#M440 Hi Rarsie - welcome to the group that none of us signed up for ! That being said at times this forum has been my sanity. My husband has been battling his GBM 4 for 2 years this month - he too talks about being around for the next 20, he is 49 years old. I go to every medical appt with him and often have a list of questions I'm not afraid to ask. We are lucky in that when David was strong enough he returned to work in a somewhat limited capacity & I truly believe this often gives him a reason to get going each day. We gave had recurrence of tumour & had stereotactic radiation while we are continuing towards our 18th dose of temodal. This our oncologists suggests will be our last dose this month as his body needs the rest - then another scan in May. We seem to live our life in 12 week cycles between MRIs. It is hard of that there is no doubt and I personally often hate every moment but then tomorrow is another day. It's either us planning our lives where we can or letting the cancer call the shots - not while I can help it ! We are even away on holidays at the moment with our boys - making good memories is a way I look at it . Back to the oncologist on the 20th which is back to reality - even though we have the most aggressive of brain tumours (I say we because we are all effected) in some ways we have been so fortunate with what we have been able to achieve in the last 2 years. I am the organizer in the family & that's what I keep doing - just to keep us going & to have something to look forward too. I do understand though that this won't last forever - sometimes I would like to know how long we have though. Plz stay in touch - vent, get angree, ask questions - anything that feels right - you wont be judged here. Nite Sun, 08 Apr 2012 14:28:25 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8587#M440 Smiley 2012-04-08T14:28:25Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8588#M441 Hi Rarsie - welcome to the group that none of us signed up for ! That being said at times this forum has been my sanity. My husband has been battling his GBM 4 for 2 years this month - he too talks about being around for the next 20, he is 49 years old. I go to every medical appt with him and often have a list of questions I'm not afraid to ask. We are lucky in that when David was strong enough he returned to work in a somewhat limited capacity & I truly believe this often gives him a reason to get going each day. We gave had recurrence of tumour & had stereotactic radiation while we are continuing towards our 18th dose of temodal. This our oncologists suggests will be our last doseT this month as his body needs the rest - then another scan in May. We seem to live our life in 12 week cycles between MRIs. It is hard of that there is no doubt and I personally often hate every moment but then tomorrow is another day. It's either us planning our lives where we can or letting the cancer call the shots - not while I can help it ! We are even away on holidays at the moment with our boys - making good memories is a way I look at it . Back to the oncologist on the 20th which is back to reality - even though we have the most aggressive of brain tumours (I say we because we are all effected) in some ways we have been so fortunate with what we have been able to achieve in the last 2 years. I am the organizer in the family & that's what I keep doing - just to keep us going & to have something to look forward too. I do understand though that this won't last forever - sometimes I would like to know how long we have though. Plz stay in touch - vent, get angree, ask questions - anything that feels right - you wont be judged here. Nite Sun, 08 Apr 2012 14:28:42 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8588#M441 Smiley 2012-04-08T14:28:42Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8589#M442 Hi Rarsie - welcome to the group that none of us signed up for ! That being said at times this forum has been my sanity. My husband has been battling his GBM 4 for 2 years this month - he too talks about being around for the next 20, he is 49 years old. I go to every medical appt with him and often have a list of questions I'm not afraid to ask. We are lucky in that when David was strong enough he returned to work in a somewhat limited capacity & I truly believe this often gives him a reason to get going each day. We gave had recurrence of tumour & had stereotactic radiation while we are continuing towards our 18th dose of temodal. This our oncologists suggests will be our last doseT this month as his body needs the rest - then another scan in May. We seem to live our life in 12 week cycles between MRIs. It is hard of that there is no doubt and I personally often hate every moment but then tomorrow is another day. It's either us planning our lives where we can or letting the cancer call the shots - not while I can help it ! We are even away on holidays at the moment with our boys - making good memories is a way I look at it . Back to the oncologist on the 20th which is back to reality - even though we have the most aggressive of brain tumours (I say we because we are all effected) in some ways we have been so fortunate with what we have been able to achieve in the last 2 years. I am the organizer in the family & that's what I keep doing - just to keep us going & to have something to look forward too. I do understand though that this won't last forever - sometimes I would like to know how long we have though. Plz stay in touch - vent, get angree, ask questions - anything that feels right - you wont be judged here. Nite Sun, 08 Apr 2012 14:28:45 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8589#M442 Smiley 2012-04-08T14:28:45Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8590#M443 Hi Rarsie - welcome to the group that none of us signed up for ! That being said at times this forum has been my sanity. My husband has been battling his GBM 4 for 2 years this month - he too talks about being around for the next 20, he is 49 years old. I go to every medical appt with him and often have a list of questions I'm not afraid to ask. We are lucky in that when David was strong enough he returned to work in a somewhat limited capacity & I truly believe this often gives him a reason to get going each day. We gave had recurrence of tumour & had stereotactic radiation while we are continuing towards our 18th dose of temodal. This our oncologists suggests will be our last doseT this month as his body needs the rest - then another scan in May. We seem to live our life in 12 week cycles between MRIs. It is hard of that there is no doubt and I personally often hate every moment but then tomorrow is another day. It's either us planning our lives where we can or letting the cancer call the shots - not while I can help it ! We are even away on holidays at the moment with our boys - making good memories is a way I look at it . Back to the oncologist on the 20th which is back to reality - even though we have the most aggressive of brain tumours (I say we because we are all effected) in some ways we have been so fortunate with what we have been able to achieve in the last 2 years. I am the organizer in the family & that's what I keep doing - just to keep us going & to have something to look forward too. I do understand though that this won't last forever - sometimes I would like to know how long we have though. Plz stay in touch - vent, get angree, ask questions - anything that feels right - you wont be judged here. Nite Sun, 08 Apr 2012 14:29:41 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8590#M443 Smiley 2012-04-08T14:29:41Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8591#M444 Hi Rarsie - welcome to the group that none of us signed up for ! That being said at times this forum has been my sanity. My husband has been battling his GBM 4 for 2 years this month - he too talks about being around for the next 20, he is 49 years old. I go to every medical appt with him and often have a list of questions I'm not afraid to ask. We are lucky in that when David was strong enough he returned to work in a somewhat limited capacity & I truly believe this often gives him a reason to get going each day. We gave had recurrence of tumour & had stereotactic radiation while we are continuing towards our 18th dose of temodal. This our oncologists suggests will be our last doseT this month as his body needs the rest - then another scan in May. We seem to live our life in 12 week cycles between MRIs. It is hard of that there is no doubt and I personally often hate every moment but then tomorrow is another day. It's either us planning our lives where we can or letting the cancer call the shots - not while I can help it ! We are even away on holidays at the moment with our boys - making good memories is a way I look at it . Back to the oncologist on the 20th which is back to reality - even though we have the most aggressive of brain tumours (I say we because we are all effected) in some ways we have been so fortunate with what we have been able to achieve in the last 2 years. I am the organizer in the family & that's what I keep doing - just to keep us going & to have something to look forward too. I do understand though that this won't last forever - sometimes I would like to know how long we have though. Plz stay in touch - vent, get angree, ask questions - anything that feels right - you wont be judged here. Nite Sun, 08 Apr 2012 14:30:08 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8591#M444 Smiley 2012-04-08T14:30:08Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8592#M445 Hi Rarsie - welcome to the group that none of us signed up for ! That being said at times this forum has been my sanity. My husband has been battling his GBM 4 for 2 years this month - he too talks about being around for the next 20, he is 49 years old. I go to every medical appt with him and often have a list of questions I'm not afraid to ask. We are lucky in that when David was strong enough he returned to work in a somewhat limited capacity & I truly believe this often gives him a reason to get going each day. We gave had recurrence of tumour & had stereotactic radiation while we are continuing towards our 18th dose of temodal. This our oncologists suggests will be our last doseT this month as his body needs the rest - then another scan in May. We seem to live our life in 12 week cycles between MRIs. It is hard of that there is no doubt and I personally often hate every moment but then tomorrow is another day. It's either us planning our lives where we can or letting the cancer call the shots - not while I can help it ! We are even away on holidays at the moment with our boys - making good memories is a way I look at it . Back to the oncologist on the 20th which is back to reality - even though we have the most aggressive of brain tumours (I say we because we are all effected) in some ways we have been so fortunate with what we have been able to achieve in the last 2 years. I am the organizer in the family & that's what I keep doing - just to keep us going & to have something to look forward too. I do understand though that this won't last forever - sometimes I would like to know how long we have though. Plz stay in touch - vent, get angree, ask questions - anything that feels right - you wont be judged here. Nite Sun, 08 Apr 2012 14:31:47 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8592#M445 Smiley 2012-04-08T14:31:47Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8593#M446 Hi Rarsie - welcome to the group that none of us signed up for ! That being said at times this forum has been my sanity. My husband has been battling his GBM 4 for 2 years thisI month - he too talks about being around for the next 20, he is 49 years old. I go to every medical appt with him and often have a list of questions I'm not afraid to ask. We are lucky in that when David was strong enough he returned to work in a somewhat limited capacity & I truly believe this often gives him a reason to get going each day. We gave had recurrence of tumour & had stereotactic radiation while we are continuing towards our 18th dose of temodal. This our oncologists suggests will be our last doseT this month as his body needs the rest - then another scan in May. We seem to live our life in 12 week cycles between MRIs. It is hard of that there is no doubt and I personally often hate every moment but then tomorrow is another day. It's either us planning our lives where we can or letting the cancer call the shots - not while I can help it ! We are even away on holidays at the moment with our boys - making good memories is a way I look at it . Back to the oncologist on the 20th which is back to reality - even though we have the most aggressive of brain tumours (I say we because we are all effected) in some ways we have been so fortunate with what we have been able to achieve in the last 2 years. I am the organizer in the family & that's what I keep doing - just to keep us going & to have something to look forward too. I do understand though that this won't last forever - sometimes I would like to know how long we have though. Plz stay in touch - vent, get angree, ask questions - anything that feels right - you wont be judged here. Nite Sun, 08 Apr 2012 14:31:56 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8593#M446 Smiley 2012-04-08T14:31:56Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8594#M447 Hi, My 38 year old husband has had 2 surgeries in the past 6 months to remove a grade 2 Astrocytoma from the front right side of the brain. This time he has been recommended for Radiotherapy which he will be starting soon, the treatment in itself has long term side effects but there doesn't appear to be much of a choice. Because of the low grade the tumar is not proven to be responsive to chemo, however it was very large (size of a tennis ball the first time) and it has come back so quickly that it is behaving more aggressive than expected so we were told that if we don't do radiotherapy now they expect that it will grow back in the next 12 months which could mean more surgery. Unfortunately the prognosis that doctors give is not what we want to hear with two very young children and spent so much of my time thinking of the difficulties ahead of us. However I quickly came to the reaslisation that prognosis is based on averages and not everyone falls into the average. I also found a US support site where I found long term survivors with brain tumar, this gave me some hope: http://csn.cancer.org/ Now I try to take each day as it comes and deal with what is happening now without looking too far into the future. This is hard sometimes and we are all human and it makes me angry that I can't plan for too much into the future because of the uncertainty but I just need to accept the things I have no power to change. This is my third time supporting someone with cancer as both of my parents had cancer int he past 7 years and now my husband and it never gets easier. However, what it has taught me is that doctors are great at what they do but they cannot predict the future, always ask questions but be prepared that the answer you are given may not be the one you want to hear, always trust your gut instinct and enjoy what you can of the life you are given. Mon, 09 Apr 2012 04:32:49 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8594#M447 Fran_Chris 2012-04-09T04:32:49Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8595#M448 How are you all going Smiley, how did the MRI go on the 20th? What treatments other than the Temordal and radium has hubby had, was it resected and how many times, my son was to have his 3mth MRI in June, but now they are calling him back in 2 wks, they are sus it has grown back since the op in Dec Talk soon Sandra Tue, 24 Apr 2012 07:34:47 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8595#M448 rarsie 2012-04-24T07:34:47Z https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8596#M449 Hi, My name is Cathy. I am 29 and was diagnosed with GBM4 12months ago. Since than i have had 2 surgerys and 6 weeks of radiotherpy and 6 months of chemo. I understand your worry with your son and i understand you are trying to stay realistic. I to think ill be here when i am 60. I have a very positive attitude on my prognosis. It helps me get through all the terrible things that this disease causes and keeps me going. Even if thats not what happens, i think thinking postive is what helps survive longer :) Hope he is doing well. would love to chat ::)) Tue, 22 May 2012 00:25:07 GMT https://onlinecommunity.cancercouncil.com.au/t5/Diagnosis-and-treatment/Brain-Cancer/m-p/8596#M449 CatBye 2012-05-22T00:25:07Z