Brain Cancer

[Smiley]

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

[Smiley]

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

[Smiley]

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

[Smiley]

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

[Smiley]

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

[Smiley]

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

[Smiley]

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

[Fran_Chris]

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.

[rarsie]

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

[CatBye]

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 ::))