What's your Oligodendroglioma story?

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RE: What's your Oligodendroglioma story?

by AussieMarg on Sun May 27, 2018 06:32 AM

Quote | Reply

On May 25, 2018 7:38 PM Metroman wrote:

On May 25, 2018 7:25 PM AussieMarg wrote:

On Mar 31, 2011 2:31 PM jefuchs wrote:

I've been angry at the medical community for publishing dire numbers for oligodendroglioma survival.  All of the medical websites I've seen tell me that the average survival for grade II is 10 years, and the average for grade III is 3.5 years.

It has become apparent that they've scared the bejeezes out of us beyond proportion.  For nearly a year and a half I've been seeking out other oligo patients (I'm not one myself, but my wife is), and every one I've found has beat the "average" by many years.  By contrast, regular readers here have seen many GBM stories that seem to mirror the official life expectancy pretty closely.

So, not finding even a single case that comes close to the published expectations. I want to know if you guys have seen anything different than I have.

Let me know your (or your loved one's) year of diagnosis, and how they're doing.  If you know someone who has actually died of this, please share the story.

My wife was diagnosed in November 2009, and is still on Temodar, and doing very well.

I was finally diognised with an Anaplastic oligodrendroglioma Stage 3 on the 08/08/2014 so nearly four years ago. It was three months before I was diagnosed. I had six or seven half hour seizures AND a ONE HOUR seizure before I was diagnosed with a brain tumour. This resulted in a VERY frightened Maine Coon X cat who lost weight worrying about me. The local hospital took absolutely NO notice of the police report  the ambulance people and least of all me. The medical staff at the local hospital didn't even bother to look inside my mouth where I had lacerations... . I was too dazed to even think to open my mouth at the time  I asked the so called doctor for a CT scan and his reply was "we don't do CT scans in Emergency...... My voice was so slurred that my middle son who is my Power of attorney though I had had a stroke. I didn't go back to that hospital again. I live two hours drive from the Princess Alexandra Hospital in Brisbane. My brain tumour is in my left frontal temporal lobe and was FIVE inches across when I was first diognised. My oncologist told me that it had been there for at least six to eight years hence its large size. Two weeks after I was diagnosed I underwent emergency surgery at the Princess Alexandra Hospital in Brisbane Queensland Australia. 

Because I have had extreme chemical sensitivities for the past thirty years I decided to not have chemotherapy  I was supposed to have thirty single doses of radiation treatment plus chemo. Because I opted for no chemo my brain cancer team gave me fifteen double doses of radiation therapy. The neurosurgeon team could only remove a tiny piece of brain tissue because of the size of my malignant brain tumour. 

So far and most likely because of my age (68yrs)now so 64 at the time of diognosis my medical team are astounded at how well I'm doing. I have been told that by one one of the reporting team after I have an MRI.

I have been on Keppra for the past not quite four years. Over the past year I have had to have the dose gradually reduced from 500mg twice daily to 250 twice daily because of extreme side effects. I think see my neurologist in six days time so need to talk him about me being on another antiseize drug. I also take Lamotrigine 25mg. Dr. Sandra Cobot advised me to take at least 150mmg of Organic Selenium a day so I take one capsule twice daily.

When I asked my oncologist how long I would live for with full treatment he said eight years. I asked him half treatment, he said five years, then I asked him no treatment and he said eighteen months. I have had full treatment just in a different way. The medical team had me placed into a high care nursing home for me to undergo my radiation treatment. I escaped after six months back into the community when I live alone, have had to move twice while on an Aged Pension and paying private rent. I am on an Aged Care package so get help with grocery shopping and basic cleaning. I am also entitled to six hours of cooking per week but have opted for an extra hour to go grocery shopping and no cooking for now until I really need it. I've been told that it takes months to go onto a higher level of the care package so I don't see the point of having cooking done for me when I can still do it myself. This way my dollars build up and always roll over for when I do need it.

I don't worry or get angry about how long I will last as this has a negative impact on my immune system which I need to be as strong as possible to fight the Anaplastic oligodrendroglioma Stage 3. 

I am sorry to hear that, when I was diagnosed back in 1995 they said the same to me, 8-10 years. I went through three surgeries (and the last one was cool since they woke me up halfway through to have me speak to make sure it doesn’t affect my speech. Even gave me photos of my brain). I’m still here and they now estimate 13 years to go. Processes are better now, so I wish you the best to get as many years as you can to still enjoy life! Just remember, when things seem bad, the do get better. For me, after 20 years my old girlfriend (my true, and forever love) and I found each other again as we both were searching each other at the same time. She knows my condition and doesn’t care. She wants to be together again as I do too. She’s prepared for my passing and is the best to help enjoy life while it’s still here. Make the best of what you can! Never let anything affect your life. Just remember younger people die in car accidents every day, death happens anytime, any age. so enjoy life as it’s still available!

As a matter of fact I do know that young people are killed in vehicle accidents. My late younger brother was involved in a near fatal motorbike accident when he was just twenty six. He wasn't able to work again because of his severe brain injuries. Twenty years later he developed trauma induced epilepsy (which he told no one about)

Six years after he had developed the epilepsy he passed away from his trauma induced epilepsy and was found in his room surrounded by a pool of blood. I have his autopsy report. 

I'm a VERY positive person and I'm VERY lucky ?? to still be here  I was also born happy ?? so don't have to problem with depression. 

I have found out that the biggest killer of children under the age of ten is brain cancer. I think that not many people know of this, especially in Australia ???? Tomorrow morning I will be going to another Australia's Biggest Morning Tea where every dollar raised goes to cancer research. The morning tea ?? that I'm going to tomorrow is for brain cancer research only. I'm wearing my brain cancer beanie  Next year when I go to the same morning tea ?? I hope to have some turned pens for raffles. I just need to have my antiseize drugs changed as that's my biggest health problem at the moment  

Take care 

???? Aussie Marg. 

RE: What's your Oligodendroglioma story?

by Wiferally on Sat Aug 18, 2018 02:51 AM

Quote | Reply

In 2008 my husband was diagnosed with Anaplastic oligodendroglioma stage 3. The first of now four surgeries was performed with success as best could be determined. A series of radiation treatments followed along with oral chemo. 
The 3rd and 4th surgeries only 10 months apart, the 4th just 6 weeks ago. Once again radiation and now Avastin infusions.
My husband is amazing as most would never know he has cancer at first glance. He is now 10 years and still going.
Stress is always multiplied when taking care of a loved one. 

Reading similar posts is so therapeutic for me. 

RE: What's your Oligodendroglioma story?

by mpssm on Sat Sep 01, 2018 09:32 AM

Quote | Reply

Hi, 

My partner was diagnosed with a brain tumour in 1995 on CT imaging incidentally after a head knock required scans. There were no symptoms. They adopted a watch and wait approach.

Surgery occurred in 2005 following a seizure. Gross total resection took place and a Oligo Grade 2 with co-deletions was the diagnosis.

Watch and wait then occurred until 2013 when recurrence was identified following focal seizures. Temozolomide for 12 months until Sep 2014. 

Recurrence again in March 2016 followed by Temozolomide monthly up until May 2018 when consecutive MRI's identified progressive disease and high grade glioma diagnosis.

Now awaiting VMAT radiation commencement next week for 6 weeks with concurrent Temozolomide.

We have had a long journey. Despite the long time period and progressive disease my partner has remained largely symptom free thankfully. She has well and truly exceeded the figures thrown about over the internet. Her case is an example that you can live a long life despite a brain cancer diagnosis.

I hope this helps any readers. 

  

RE: What's your Oligodendroglioma story?

by nudmfree2 on Sun Oct 28, 2018 03:00 AM

Quote | Reply

On Mar 28, 2012 2:21 AM virgo228 wrote:

Hey. This is my first post. Like most of you I came here searching for hope. My husband was diagnosed with a oligodendroglioma, grade 3 last month. He has surgery and it removed almost all of the tumor. Now he is on Temodar and getting radiation 5 days per wk for 6 wks. I am so scared! He is only 32. We have two small kids. I need to know that we will grow old together and see our grandchildren. Reading some of the posts here have given me hope that his life expectancy will be longer than the standard 3-5 yrs given by the oncologist. I just wish I knew what to do. Has anyone been to MD Anderson?

Hello Virgo228, our stories sound very similiar.  My husband was diagnosed August 2018, grade 4, and is on Temodar and getting radiation 5 days per wk for 6 weeks.  My husband is 53 and it has been a scary ride; however, we are praying everyday that there will be a way to beat this in time.  

RE: What's your Oligodendroglioma story?

by AussieMarg on Sun Oct 28, 2018 04:12 AM

Quote | Reply

On Oct 28, 2018 3:00 AM nudmfree2 wrote:

On Mar 28, 2012 2:21 AM virgo228 wrote:

Hey. This is my first post. Like most of you I came here searching for hope. My husband was diagnosed with a oligodendroglioma, grade 3 last month. He has surgery and it removed almost all of the tumor. Now he is on Temodar and getting radiation 5 days per wk for 6 wks. I am so scared! He is only 32. We have two small kids. I need to know that we will grow old together and see our grandchildren. Reading some of the posts here have given me hope that his life expectancy will be longer than the standard 3-5 yrs given by the oncologist. I just wish I knew what to do. Has anyone been to MD Anderson?

Hello Virgo228, our stories sound very similiar.  My husband was diagnosed August 2018, grade 4, and is on Temodar and getting radiation 5 days per wk for 6 weeks.  My husband is 53 and it has been a scary ride; however, we are praying everyday that there will be a way to beat this in time.  

I was diognised with Anaplastic oligodrendroglioma Stage 3 brain cancer on the 8th. August 2014 .Stage three IS the highest grade of this particular brain cancer. I refused to have chemotherapy even though I don't remember doing it. I have had extreme chemical sensitivities since August 1988 which always result in me having convulsions. I opted to have the fifteen double doses of radiation therapy at the Princess Alexandra Hospital in Brisbane Australia ???? My brain cancer has been stable for well over THREE years and now I'm halfway to my supposed to be expirary date. Ha ha I'm not going anywhere soon. At the results of my last brain MRI scan I was put on SIX monthly check ups instead of the THREE months which I was told by my oncologist that I would have to forward the rest of my life.

I have not long returned from a trip to New Zealand where we toured the South Island of New Zealand in an eight metre camper van. I did whatever my son did including salmon fishing where I caught the biggest salmon while sitting on the seat of Willie the Wheelie Walker . My advice is to take each day at a time, even if you have to take that day an hour, minute or second at a time. Above all please don't stress as this weakens the immune system. Dr Sandra Cabot advised me to take at least 150mg of organic selenium so I take two of her brand  Cabot Health Selenium Ultra Potent. I'm not here to promote her products but to try and help others. 

RE: What's your Oligodendroglioma story?

by MISSBETSY on Sun Oct 28, 2018 07:26 PM

Quote | Reply

On Oct 28, 2018 4:12 AM AussieMarg wrote:

On Oct 28, 2018 3:00 AM nudmfree2 wrote:

On Mar 28, 2012 2:21 AM virgo228 wrote:

Hey. This is my first post. Like most of you I came here searching for hope. My husband was diagnosed with a oligodendroglioma, grade 3 last month. He has surgery and it removed almost all of the tumor. Now he is on Temodar and getting radiation 5 days per wk for 6 wks. I am so scared! He is only 32. We have two small kids. I need to know that we will grow old together and see our grandchildren. Reading some of the posts here have given me hope that his life expectancy will be longer than the standard 3-5 yrs given by the oncologist. I just wish I knew what to do. Has anyone been to MD Anderson?

Hello Virgo228, our stories sound very similiar.  My husband was diagnosed August 2018, grade 4, and is on Temodar and getting radiation 5 days per wk for 6 weeks.  My husband is 53 and it has been a scary ride; however, we are praying everyday that there will be a way to beat this in time.  

I was diognised with Anaplastic oligodrendroglioma Stage 3 brain cancer on the 8th. August 2014 .Stage three IS the highest grade of this particular brain cancer. I refused to have chemotherapy even though I don't remember doing it. I have had extreme chemical sensitivities since August 1988 which always result in me having convulsions. I opted to have the fifteen double doses of radiation therapy at the Princess Alexandra Hospital in Brisbane Australia ???? My brain cancer has been stable for well over THREE years and now I'm halfway to my supposed to be expirary date. Ha ha I'm not going anywhere soon. At the results of my last brain MRI scan I was put on SIX monthly check ups instead of the THREE months which I was told by my oncologist that I would have to forward the rest of my life.

I have not long returned from a trip to New Zealand where we toured the South Island of New Zealand in an eight metre camper van. I did whatever my son did including salmon fishing where I caught the biggest salmon while sitting on the seat of Willie the Wheelie Walker . My advice is to take each day at a time, even if you have to take that day an hour, minute or second at a time. Above all please don't stress as this weakens the immune system. Dr Sandra Cabot advised me to take at least 150mg of organic selenium so I take two of her brand  Cabot Health Selenium Ultra Potent. I'm not here to promote her products but to try and help others. 

Shit..... I wrote a long reply and it disappeared.... if I find it I will send....... bottom line .......... I still have a bit of the tumor but I am great......I love southern New Zealand!!!!!!!!!! I live in Seattle . I have oligodrndroglioma 2

RE: What's your Oligodendroglioma story?

by Metroman on Sun Oct 28, 2018 07:51 PM

Quote | Reply
That is great to hear, but to let you know, I’ve been through 3 surgeries, Chemo and Radiation and have been around longer then the initial 10 year window (2005). Live everyday like it’s your last. Some the die from other causes hopefully do the same (especially care accidents and such)

RE: What's your Oligodendroglioma story?

by AussieMarg on Sun Oct 28, 2018 09:25 PM

Quote | Reply

On Oct 28, 2018 7:26 PM MISSBETSY wrote:

On Oct 28, 2018 4:12 AM AussieMarg wrote:

On Oct 28, 2018 3:00 AM nudmfree2 wrote:

On Mar 28, 2012 2:21 AM virgo228 wrote:

Hey. This is my first post. Like most of you I came here searching for hope. My husband was diagnosed with a oligodendroglioma, grade 3 last month. He has surgery and it removed almost all of the tumor. Now he is on Temodar and getting radiation 5 days per wk for 6 wks. I am so scared! He is only 32. We have two small kids. I need to know that we will grow old together and see our grandchildren. Reading some of the posts here have given me hope that his life expectancy will be longer than the standard 3-5 yrs given by the oncologist. I just wish I knew what to do. Has anyone been to MD Anderson?

Hello Virgo228, our stories sound very similiar.  My husband was diagnosed August 2018, grade 4, and is on Temodar and getting radiation 5 days per wk for 6 weeks.  My husband is 53 and it has been a scary ride; however, we are praying everyday that there will be a way to beat this in time.  

I was diognised with Anaplastic oligodrendroglioma Stage 3 brain cancer on the 8th. August 2014 .Stage three IS the highest grade of this particular brain cancer. I refused to have chemotherapy even though I don't remember doing it. I have had extreme chemical sensitivities since August 1988 which always result in me having convulsions. I opted to have the fifteen double doses of radiation therapy at the Princess Alexandra Hospital in Brisbane Australia ???? My brain cancer has been stable for well over THREE years and now I'm halfway to my supposed to be expirary date. Ha ha I'm not going anywhere soon. At the results of my last brain MRI scan I was put on SIX monthly check ups instead of the THREE months which I was told by my oncologist that I would have to forward the rest of my life.

I have not long returned from a trip to New Zealand where we toured the South Island of New Zealand in an eight metre camper van. I did whatever my son did including salmon fishing where I caught the biggest salmon while sitting on the seat of Willie the Wheelie Walker . My advice is to take each day at a time, even if you have to take that day an hour, minute or second at a time. Above all please don't stress as this weakens the immune system. Dr Sandra Cabot advised me to take at least 150mg of organic selenium so I take two of her brand  Cabot Health Selenium Ultra Potent. I'm not here to promote her products but to try and help others. 

Shit..... I wrote a long reply and it disappeared.... if I find it I will send....... bottom line .......... I still have a bit of the tumor but I am great......I love southern New Zealand!!!!!!!!!! I live in Seattle . I have oligodrndroglioma 2

Lol I loved your reply re losing the long message then losing it.

I don't have private health insurance and even if I did my Anaplastic oligodrendroglioma Stage 3 brain cancer was far too larger to be removed. My team of neurosurgeons at the Princess Alexandra Hospital in Brisbane Australia only removed enough of the cancer as a small sample for pathology testing to be 100% certain that they have put the correct name to the brain cancer. So I have a cute little dent in my skull with three titanium plates and six screw to keep the piece of my skull that was removed by the surgical team back in place. My brain cancer covered one quarter of my skull on the left hand side within the temporal area. My tumour was far too large for the neuro surgical team to even think about trying to remove the cancer. It was too large and far too deep with tentacles going deep into my brain tissue. So the Princess Alexandra Hospital in Brisbane oncologist team zapped my brain cancer with fifteen double doses of radiation therapy which barbecued it. Now wgeb I go back to the Princess Alexandra for my MRI brain scan results my cancer is barely visible on the computer screen. Yah. 

RE: What's your Oligodendroglioma story?

by MISSBETSY on Mon Oct 29, 2018 12:27 AM

Quote | Reply

On Oct 28, 2018 9:25 PM AussieMarg wrote:

On Oct 28, 2018 7:26 PM MISSBETSY wrote:

On Oct 28, 2018 4:12 AM AussieMarg wrote:

On Oct 28, 2018 3:00 AM nudmfree2 wrote:

On Mar 28, 2012 2:21 AM virgo228 wrote:

Hey. This is my first post. Like most of you I came here searching for hope. My husband was diagnosed with a oligodendroglioma, grade 3 last month. He has surgery and it removed almost all of the tumor. Now he is on Temodar and getting radiation 5 days per wk for 6 wks. I am so scared! He is only 32. We have two small kids. I need to know that we will grow old together and see our grandchildren. Reading some of the posts here have given me hope that his life expectancy will be longer than the standard 3-5 yrs given by the oncologist. I just wish I knew what to do. Has anyone been to MD Anderson?

Hello Virgo228, our stories sound very similiar.  My husband was diagnosed August 2018, grade 4, and is on Temodar and getting radiation 5 days per wk for 6 weeks.  My husband is 53 and it has been a scary ride; however, we are praying everyday that there will be a way to beat this in time.  

I was diognised with Anaplastic oligodrendroglioma Stage 3 brain cancer on the 8th. August 2014 .Stage three IS the highest grade of this particular brain cancer. I refused to have chemotherapy even though I don't remember doing it. I have had extreme chemical sensitivities since August 1988 which always result in me having convulsions. I opted to have the fifteen double doses of radiation therapy at the Princess Alexandra Hospital in Brisbane Australia ???? My brain cancer has been stable for well over THREE years and now I'm halfway to my supposed to be expirary date. Ha ha I'm not going anywhere soon. At the results of my last brain MRI scan I was put on SIX monthly check ups instead of the THREE months which I was told by my oncologist that I would have to forward the rest of my life.

I have not long returned from a trip to New Zealand where we toured the South Island of New Zealand in an eight metre camper van. I did whatever my son did including salmon fishing where I caught the biggest salmon while sitting on the seat of Willie the Wheelie Walker . My advice is to take each day at a time, even if you have to take that day an hour, minute or second at a time. Above all please don't stress as this weakens the immune system. Dr Sandra Cabot advised me to take at least 150mg of organic selenium so I take two of her brand  Cabot Health Selenium Ultra Potent. I'm not here to promote her products but to try and help others. 

Shit..... I wrote a long reply and it disappeared.... if I find it I will send....... bottom line .......... I still have a bit of the tumor but I am great......I love southern New Zealand!!!!!!!!!! I live in Seattle . I have oligodrndroglioma 2

Lol I loved your reply re losing the long message then losing it.

I don't have private health insurance and even if I did my Anaplastic oligodrendroglioma Stage 3 brain cancer was far too larger to be removed. My team of neurosurgeons at the Princess Alexandra Hospital in Brisbane Australia only removed enough of the cancer as a small sample for pathology testing to be 100% certain that they have put the correct name to the brain cancer. So I have a cute little dent in my skull with three titanium plates and six screw to keep the piece of my skull that was removed by the surgical team back in place. My brain cancer covered one quarter of my skull on the left hand side within the temporal area. My tumour was far too large for the neuro surgical team to even think about trying to remove the cancer. It was too large and far too deep with tentacles going deep into my brain tissue. So the Princess Alexandra Hospital in Brisbane oncologist team zapped my brain cancer with fifteen double doses of radiation therapy which barbecued it. Now wgeb I go back to the Princess Alexandra for my MRI brain scan results my cancer is barely visible on the computer screen. Yah. 

Yeah..... the tendrils...... freaky. I have a dent too!!!! The surgeons put my head in a clamp ,sawed it open..... then they sawed a triangular hole as a window into my brain......took the tumor out and stamped me shut. Very quickly my story is: My left leg was really acting weird so for 5 years I went to the doc and they said it was from running...... . I kept asking to see a neurologist but they did not think I need one. One day my left leg and left side of my body had a seizure. Next day I called the doc and demanded an MRI and within 15 minutes she came back and said I had a brain tumor. So a few days later I had surgery, they were going to just take a biopsy but decided to remove all they could. I am fine with some symptoms. Anyway I just move along and I feel damn good. Good on ya mate,Betsy

RE: What's your Oligodendroglioma story?

by AussieMarg on Mon Oct 29, 2018 05:21 AM

Quote | Reply

On Oct 29, 2018 12:27 AM MISSBETSY wrote:

On Oct 28, 2018 9:25 PM AussieMarg wrote:

On Oct 28, 2018 7:26 PM MISSBETSY wrote:

On Oct 28, 2018 4:12 AM AussieMarg wrote:

On Oct 28, 2018 3:00 AM nudmfree2 wrote:

On Mar 28, 2012 2:21 AM virgo228 wrote:

Hey. This is my first post. Like most of you I came here searching for hope. My husband was diagnosed with a oligodendroglioma, grade 3 last month. He has surgery and it removed almost all of the tumor. Now he is on Temodar and getting radiation 5 days per wk for 6 wks. I am so scared! He is only 32. We have two small kids. I need to know that we will grow old together and see our grandchildren. Reading some of the posts here have given me hope that his life expectancy will be longer than the standard 3-5 yrs given by the oncologist. I just wish I knew what to do. Has anyone been to MD Anderson?

Hello Virgo228, our stories sound very similiar.  My husband was diagnosed August 2018, grade 4, and is on Temodar and getting radiation 5 days per wk for 6 weeks.  My husband is 53 and it has been a scary ride; however, we are praying everyday that there will be a way to beat this in time.  

I was diognised with Anaplastic oligodrendroglioma Stage 3 brain cancer on the 8th. August 2014 .Stage three IS the highest grade of this particular brain cancer. I refused to have chemotherapy even though I don't remember doing it. I have had extreme chemical sensitivities since August 1988 which always result in me having convulsions. I opted to have the fifteen double doses of radiation therapy at the Princess Alexandra Hospital in Brisbane Australia ???? My brain cancer has been stable for well over THREE years and now I'm halfway to my supposed to be expirary date. Ha ha I'm not going anywhere soon. At the results of my last brain MRI scan I was put on SIX monthly check ups instead of the THREE months which I was told by my oncologist that I would have to forward the rest of my life.

I have not long returned from a trip to New Zealand where we toured the South Island of New Zealand in an eight metre camper van. I did whatever my son did including salmon fishing where I caught the biggest salmon while sitting on the seat of Willie the Wheelie Walker . My advice is to take each day at a time, even if you have to take that day an hour, minute or second at a time. Above all please don't stress as this weakens the immune system. Dr Sandra Cabot advised me to take at least 150mg of organic selenium so I take two of her brand  Cabot Health Selenium Ultra Potent. I'm not here to promote her products but to try and help others. 

Shit..... I wrote a long reply and it disappeared.... if I find it I will send....... bottom line .......... I still have a bit of the tumor but I am great......I love southern New Zealand!!!!!!!!!! I live in Seattle . I have oligodrndroglioma 2

Lol I loved your reply re losing the long message then losing it.

I don't have private health insurance and even if I did my Anaplastic oligodrendroglioma Stage 3 brain cancer was far too larger to be removed. My team of neurosurgeons at the Princess Alexandra Hospital in Brisbane Australia only removed enough of the cancer as a small sample for pathology testing to be 100% certain that they have put the correct name to the brain cancer. So I have a cute little dent in my skull with three titanium plates and six screw to keep the piece of my skull that was removed by the surgical team back in place. My brain cancer covered one quarter of my skull on the left hand side within the temporal area. My tumour was far too large for the neuro surgical team to even think about trying to remove the cancer. It was too large and far too deep with tentacles going deep into my brain tissue. So the Princess Alexandra Hospital in Brisbane oncologist team zapped my brain cancer with fifteen double doses of radiation therapy which barbecued it. Now wgeb I go back to the Princess Alexandra for my MRI brain scan results my cancer is barely visible on the computer screen. Yah. 

Yeah..... the tendrils...... freaky. I have a dent too!!!! The surgeons put my head in a clamp ,sawed it open..... then they sawed a triangular hole as a window into my brain......took the tumor out and stamped me shut. Very quickly my story is: My left leg was really acting weird so for 5 years I went to the doc and they said it was from running...... . I kept asking to see a neurologist but they did not think I need one. One day my left leg and left side of my body had a seizure. Next day I called the doc and demanded an MRI and within 15 minutes she came back and said I had a brain tumor. So a few days later I had surgery, they were going to just take a biopsy but decided to remove all they could. I am fine with some symptoms. Anyway I just move along and I feel damn good. Good on ya mate,Betsy

Hi Betsy,

Thank-you very much for your reply. Just after I was diagnosed with brain cancer my oncologist told me that I had had my brain cancer from six to eight years ago. I eventually worked it's out that I had the brain cancer closer to eight years because of mainly my total exhaustion even though I did have Chronic Fatigue Syndrome this other exhaustion was definitely a LOT more and continual.

Then one night in May 2014 I was talking to a friend in another state far away from here. I had a MASSIVE seizure and lost conscious very soon  My friend dialled000wwhich is the emergency service number in Australia.The policeestimated that I had been unconscious for at least twenty fivemu yet when I was taken by ambulance to the local hospital the staff took absolute NO NOTICE of what I told them nor the ambulance service OR the policereport. I had lacerations inside my mouth because of the long seizure. This was repeated over and over again for the next THREE months.One seizure lasted for ONE HOUR but Iknew IF I had called the ambulance after regaining consciousness I would definitely have gone into shock and I would NOT beherenow.My doctor" hadn'tbothered to sender me for either a CT scan or a MRI. I live alone and back then I had sons still in the Australian Defence Force so scattered all around Australia ???? I eventually trememberedto tell my doctor about the sharp shooting pains at thetop of my head and the rest ishistory because that's when he soranf into action. I had to move away from Toowoomba for other reasons. but.now I'm very happyto be back home in beautiful Toowoomba.

Take care of you OK Marg ?? 

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