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AussieMarg's Message Board Messages

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On Jun 14, 2019 2:53 AM AussieMarg wrote:

Back on the 8th. August 2014 at 2.30 pm I was diagnosed with Anaplastic Oligodrendroglioma Stage 3 brain cancer cancer. After fifteen double doses of radiation therapy whilst in a High Care level nursing home at Mount Gravatt in Brisbane Australia ???? I manage to escape from the nursing and lived by myself in society. I have even had to move twice since the nursing home. My brain cancer hasn't been stable for a bit over three years. I now have extensive scarring on my brain from the fifteen double doses of radiation therapy. Now my feet run on the spot often when I'm sitting down. I get no warning whatsoever. Onemmorning I was trying to get out of bed then when my feet were about six inches from the floor, they started to run on the spot, which caused me to fall and hit my head on the wall where the wall stud is. I called the ambulance and was taken to the Toowoomba Hospital where I live. Has anyone else who has brain cancer especially Anaplastic Oligodrendroglioma Stage 3 brain cancer experienced having their feet running on the spot while they are thankfully sitting down.

Sincerely Aussie Marg. 

My brain cancer has been stable for a bit over three years it should have read. Difficult to see on an Android phone as my computer. 

Sincerely Aussie Marg 

Back on the 8th. August 2014 at 2.30 pm I was diagnosed with Anaplastic Oligodrendroglioma Stage 3 brain cancer cancer. After fifteen double doses of radiation therapy whilst in a High Care level nursing home at Mount Gravatt in Brisbane Australia ???? I manage to escape from the nursing and lived by myself in society. I have even had to move twice since the nursing home. My brain cancer hasn't been stable for a bit over three years. I now have extensive scarring on my brain from the fifteen double doses of radiation therapy. Now my feet run on the spot often when I'm sitting down. I get no warning whatsoever. Onemmorning I was trying to get out of bed then when my feet were about six inches from the floor, they started to run on the spot, which caused me to fall and hit my head on the wall where the wall stud is. I called the ambulance and was taken to the Toowoomba Hospital where I live. Has anyone else who has brain cancer especially Anaplastic Oligodrendroglioma Stage 3 brain cancer experienced having their feet running on the spot while they are thankfully sitting down.

Sincerely Aussie Marg. 

On Apr 22, 2019 6:11 PM GiuseppeG wrote:

Hi,  

My wife (33) had a partial resection a few weeks ago.  Recovery has been great. The surgeon was amazing, removed much of it, and aside from her scar, you'd never know she just had brain surgery. She was  ready to go back to work a week later (she insisted on it, her boss wanted her to keep resting). Then we got the Pathology report: AOD, grade 3. She has done her best to avoid Google, and was waiting to hear from the Neuro Oncologist first (we're going tomorrow), rather than preemptively worry about statistics and stories that may or may not apply to her. I wasn't so smart. This stupid cancer doesn't let up. It comes back over and over, worse than before. The word "terminal" is in every treatment article about it. She's the smartest, strongest, most positive person I've ever known, and I'm so scared for her. I can't sleep, I have to constantly fight tears and distract my mind when we're together, and can't hold it in when she's away. I don't know how I'll hold it together tomorrow, let alone through all that's ahead. How do you give the person you love hope and joy in what seems like a hopelessly horrible situation?

I was diagnosed with Anaplastic oligodrendroglioma Stage 3 brain cancer on the 22nd August 2014 at 2.30 pm. I was so scared for my life and freaked out when I realised that I had to phone my three sons who were living in different states to me at the time. I underwent brain surgery to remove a small piece of the cancerous tumour as it covered one THIRD of my brain and was impossible to remove. A 16mm by 6mm by 6mm was removed to check that the diognoses was 100 % correct. I opted for no chemotherapy as I have severe chemical sensitivities which always result in convulsions  The Princess Alexandra Hospital in Brisbane gave me fifteen DOUBLE doses of radiation therapy whilst in a High Care level nursing home. I escaped fron the nursing home six months later to live by myself and my dearly loved Maine Coon X cat who was in a cattery for eleven months to the day. Last year in September I was well enough to go to New Zealand with my youngest son. We travelled in a rented camper van and had a great time. We covered 5,000 kilometers in three and a half weeks. I also have an under active thyroid gland and BLASTED kidney stones which has depletion my energy levels. At the moment my brain cancer is the least of my worries  It's the kidney stones along with Diabetes 2 which give me the most grief at the moment, especially the kidney stones. I have the 1p19q heriditory depletion which means that I will live a few more years than people who don't want to this depletion 

Being scared is a normal part of adapting to either having cancer or a loved one who has been diagnosed with brain cancer. I still have a few items on my wishlist that I intend to use. I want to go horse riding and go for a ride on a Harley Davison old style classic bike. I know who to go to as she's already invited me. So as soon as I'm rid of the blasted kidney stones I'm going. 

Sincerely Aussie Marg. 

RE: Scaring on my brain.

by AussieMarg - April 17 at 10:11 PM

On Apr 16, 2019 8:12 PM bizzerbee wrote:

Have you asked about Avaistin or would that cause the same reaction to other chemicals. It is not chemo persay but it is a drug that is delivered by an IV. It is one of the best drugs out there for treating sysmptoms that are causeing swelling and scaring in the brain. I do not know what kind of issue you have that makes you have convulsions so I do not if this drug would work but I do know that is has helped many others dealing with similar issues. What has your team reccomended that you do? 

I have just read about Avaistin and there's nothing there about brain cancer. There's information on lung, colon and breast cancer including how expensive this particular drug is. I'm a public outpatient at the Princess Alexandra Hospital in Brisbane which is a two hour drive each way from Toowoomba. As a public patient in my state of Queensland, Australia we have to take what we are given drug wise except, I refuse to have chemotherapy because of my severe chemical sensitivities so I had FIFTEEN double doses of radiation therapy instead  I don't even know IF this extremely expensive drug is available in Australia or not. Thank you for your reply.

Sincerely Aussie Marg. 

RE: Scaring on my brain.

by AussieMarg - April 09 at 7:11 AM

On Apr 08, 2019 4:14 PM stevew7000 wrote:

I don't know, but I wonder if the chemo would have been more gentle on you.

How on earth could chemotherapy be "more gentle" than the radiation treatment whenever I have already explained what happened to me when I'm exposed harsh chemicals??? The oncologist emphasised the IMPORTANCE of the radiation treatment over the chemotherapy as he told me "the chemotherapy is to mop up any left over brain cancer cells." We all know that I made the correct descion to opt out of the chemo. For the past THREE years, EVERY ONE of my specialists has been amazed at how well I have been doing. Last September  I spent the majority of the month touring beautiful New Zealand with my youngest son . This year I have been going down hill fast.

Sincerely Aussie Marg. 

RE: Scaring on my brain.

by AussieMarg - April 08 at 10:30 PM

On Apr 08, 2019 4:14 PM stevew7000 wrote:

I don't know, but I wonder if the chemo would have been more gentle on you.

No way Hozay would any sort of chemotherapy been more gentle on me. IF I had accepted chemo pills as well as the THIRTY single doses of radiation  I would most likely be dead by now AND immediately after treatment my actual quality of life would have been MUCH less. I wasn't able to have any stronger chemotherapy because ALL  chemicals make me have severe convulsions to the extent that I have been sitting on achairc aftera accidentlybbreathingi in fuelfumesl and l have busted the cross arm between the chair legs. Years ago when I was in a wheelchair, I busted the frame of my alloy wheel chair.

Aussie Marg. 

Scaring on my brain.

by AussieMarg - April 06 at 7:21 AM

My brain is Anaplastic oligodrendroglioma Stage 3 brain cancer. I refused any chemotherapy as I have severe chemical sensitivities which always result in  convulsions.Io opted for fifteen double doses of radiationtherapyi instead. I spents six months in a High Care level nursing hometor recover. I havebeenf fairly fine up until the beginning of this year. When I received the last MRI brain scan results on the 22nd February it showed extensive scaring covering allofmybbrain.I  had been losings strengthandb balance for a few monthsbeforehand.Willie mywWheelie Walker is always by mmy side. My question is has anyone else encountered this problem with their brain cancery? 

On Dec 16, 2018 11:42 PM FrankeW wrote:

I am almost at the 5 year mark with my Oligodendroglioma Grade 3 brain cancer with no recurrence.  My surgery was February 18, 2014 which removed 98+% of the tumor on my motor strip.  Was on Temodar for one year.  No radiation.  I haven't had a seizure since surgery.  I am not on any medication.  I take CBD oil.  I have been getting my MRI every 4 months.  Just had one yesterday - all clear.  My NO suggests the next MRI in 5 months.  Just wondering if others out there are going longer between MRI's.  Anyone going once or twice a year or waiting even longer between MRI's?

It's Aussie Marg here. My Anaplastic oligodrendroglioma Stage 3 brain cancer was diognised on the 08 /08/2014 at 2.30 pm .I had emergency surgery two weeks later and my brain cancer was far too large to be removed so a little sliver was taken and sent to pathology which took a long week to complete the results. I chose to not have chemotherapy as I have EXTREME chemical sensitivities which always result in quite severe convulsions. I had fifteen double doses of radiation therapy whilst in a High Care level nursing home. The radiation treatment was at the Princess Alexandra Hospital in Brisbane Queensland Australia ????  It took a few months for my brain ?? to settle down and since then there hasn't been any reoccurance of the cancer. On my last MRI brain scan results in late August this year I was told my the oncologist that now I can go onto six monthly ckeck ups. ?? I had all my treatment at one of the major teaching hospitals in Australia ???? As my local hospital in Toowoomba Queensland didn't even take any notice of the ambulance AND the police reports I absolutely LOATHE that hospital. It took FIVE months for me to be diagnosed and by that time the cancer was the size of ONE quarter of my brain ?? and FAR TOO large to remove any of it except a tiny piece for pathology testing.

I hope you continue to do very well. 

Aussie Marg. ?? 

On Dec 07, 2018 9:43 PM ottoh wrote:

I want to say it was 5cm but am not sure anymore. It was the size of a small orange in her front right temporal lobe. We enrolled her in the ALA-5 clnical trial @ UCSF and Dr. Berger was the surgeon. Google the ALA-5 trials. They inject you with a chemical that when they get all that they can see of the tumor, they turn out the lights and turn on a black light that lights up the remaining pieces of the tumor to a floresent bright orange glow so they can get a lot more of the tenticles and pieces they may not have seen. They also did a scan on her brain to see what was functioning and what was'nt so they could take a margin. My wife has a cute dent as well! ;-)) If you haven't researched the use of CBD and THC oils, I would highly recommend you do. There are clinical trials going on @ GW Pharmacuticals with CBD,THC, and Temador chemo that they are having great success with. We have had her on them and I believe they are a major reason she has not had a relapse. I wish you all the best Marg and stay strong! It ain't over till it's over. There is always hope. 

Hi again, 

So if your wife's tumour was approximately five centremetres across it would have been about the size of an egg. I found another lady who has the exact brain cancer that I have and even with the 1p19q deletion. This lady's brain tumour was also completely removed whereas mine was too large. I think that I have mentioned I had fifteen double doses of radiation therapy at the Princess Alexandra Hospital in Brisbane Queensland Australia. As I also have had extreme chemical sensitivities which always result in severe convulsions for the past thirty years I have to be very careful with what I breathe in, eat and drink. Apart from my extreme chemical sensitivities I can't afford the expense of medical Cannibis oil. Even IF the oil was affordable I still won't take it risk because of my extreme chemical sensitivities. What I was advised to do by Dr. Sandra Cabot was to take at least one Organic Selenium capsule. I take one in the morning and also one at night. Organic Selenium is an antioxidant which strengthens our immune system. I'm also a happy and positive person by nature so I believe it's what I'm doing as well as my very positive attitude towards life AND my brain cancer is why I'm doing so well. I have also always eaten a very healthy diet and for since August 2014 I have become even more conscious about the diet and having a healthy lifestyle.

Sincerely Aussie Marg. 

On Dec 07, 2018 6:06 PM ottoh wrote:

Dr. Berger removed my wifes tumor as well! She's now 3 years out. He is a great surgeon!! 

May I ask you how large was your wife's brain tumour that the surgeon was able to remove all of the cancerous tumour ? I'm asking you because my Stage 3 brain cancer Ananaplastic oligodrendroglioma was far too large to remove. It not only covered one quarter of my brain but it had tenticle like structures going very deep into my brain. My brain surgery team at the Princess Alexandra Hospital in Brisbane Queensland Australia could only remove a small sample for pathology testing. Now I have what I call a "cute little dent" in my skull with three titanium plates and six screws.

Sincerely Aussie Marg. 

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About AussieMarg

Survivor
Brain Cancer
Acupuncture, After Treatment, Cancer Diagnosis, Cancer Nutrition, Cancer Prevention, Cancer Treatments, Clinical Trials and Research, Conventional Treatments, Diet, Emotional Support, Genetics, Naturopathic Medicine, Physical Therapy, Prevention Tips, Radiation, Recipes, Side Effects, Spiritual Support, Supplements

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