'Bruce' the brain tumour

Occasional Contributor

'Bruce' the brain tumour

New to the page, new to cancer. Found out I had a pretty big brain tumour (Bruce) in a god awful location 2 months ago. Surgery went better than expected and I'm about to start chemo and radiation concurrently in 2 weeks. Anyone else in the same situation? I'm interested in your experience or opinion of concurrent treatment +/- concurrent natural therapy (IVC, diet, cannabis oil ect) Thanks!
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Occasional Contributor

Re: 'Bruce' the brain tumour

Hi raech_001 I am sorry to hear of your diagnosis but pleased your surgery went well - are you having chemo or radiation first? I have pancreatic lymphoma which was treated with surgery first then chemo for 6 months then 2 additional infusions of Retuxamab - over time you become used to the terminology and what they mean. I have not tried any alternative treatments (yet) but as the side/after effects manifest themselves (I have developed chemo induced arthritis) I will be looking into them more. Are you located in Australia? I am located in Canberra. Just to let you know that WA has legalised cannabis oil for medicinal purposes just recently. Hopeing all goes well with you and please let us know if any of the alternatives you use are effective/successful or not. Anne
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Occasional Contributor

Re: 'Bruce' the brain tumour

Hi Anne, Sorry to hear about your diagnosis and as well. The arthritis is a bit of a blow as well. I having concerns about the long term side effects of radiation to the brain. Are you in remission now? I started both chemo and radiation last week. No side effects from either yet but I believe they will kick in soon. My naturopath started me on a whole heap of supplements to support my immune system through treatment but I have no way of knowing if they work as they started at the same time as treatment. Makes me feel like I'm doing as much as possible I suppose.... We are in Qld. They have just legalised the oil here too. It won't be available until march next year though, and then only to terminal patients. From my reading it sounds like some of your side effects could benefit from it. All the best x
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Re: 'Bruce' the brain tumour

Hi Bruce. I have 4th stage breast cancer. By the time it was found it was inoperable in two places in my first vertebrae and on my artery in the back of my head it is terminal. I had ten treatments of radiation to the back of my head. Really great treatment only side effects was like sunburn to the back of throat.I am not being offered chemo so I can't tell about that. I was given months to live that was 3 and half years ago. I recomend radiation to anyone who can get it.
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Re: 'Bruce' the brain tumour

Hi Bruce. I have 4th stage breast cancer. By the time it was found it was inoperable in two places in my first vertebrae and on my artery in the back of my head it is terminal. I had ten treatments of radiation to the back of my head. Really great treatment only side effects was like sunburn to the back of throat.I am not being offered chemo so I can't tell about that. I was given months to live that was 3 and half years ago. I recomend radiation to anyone who can get it.
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Occasional Contributor

Re: 'Bruce' the brain tumour

Hey, I have finished my treatment this year for Anaplastic astrocytoma brain tumour stage 3. 

After surgery, I was able to be put on a trial which involved the standard radiation (about 6 1/2 weeks ) and then 12 months of chemotherapy, which consisted of temezolomide 5 days out of every 28 for the 12 rounds = 12 months. I had my first clear scan in December 2015 and just had a follow up earlier this week and still no re-occurance. 

I found it's a hard decision on what to do with so many things out there, I trusted the doctors etc at the hospital and feel that if it does re-occur, then I would consider other therapies. 

Cheers, Maggie. 

Visitor

Re: 'Bruce' the brain tumor - just thought I'd make contact..

Hi. I was diagnosed with Glioblastoma last Monday after the results came back from the tumor that Royal Brisbane Hospital took out earlier last week. Looks like the op went OK. I'm home now, waiting....

I'll go onto chemo (Temozolomide) and radiation as soon as they are ready. I've got interviews next week with the radio and chemo oncologists and I guess it all starts soon after that. I had the radio initial interview on Monday so I know it's 6 weeks of Mon-Fri radio (30 sessions). With the Chemo I don't know the regime yet.

I'm scared out of my head and working to deal with it all + starting to get superannuation and work leave sorted.

I never considered myself mentally strong or physically brave so I'm wondering what the whole treatment process will look like. My wife is my primary carer and I am concerned that this will be too much for her as our kids are in high school and we were flat out keeping up with everything before all this started.

Sorry that the above is a bit long but I found this site and wanted to learn from others' experiences.

 

 

 

Contributor

Re: 'Bruce' the brain tumour

Hi Raech,

i am 45 years old and found out 6 months ago after a seizure that I have stage 4 GBM 

i had the tumor removed from the right temporal lobe. I was told that I would probably be paralyzed on my left side. Surgery went well and I came out with numbness below my left knee but still able to walk.

3 weeks after surgery I started the 6 week radiotherapy and chemo course. 

My movement was getting worse and after 4 weeks I could hardly walk. I was also having focal seizures in my shoulder and hip.

The Monday after radio had finished I had a tonic seizure, fell and hit my head. I had a CT scan done which just showed a lot of swelling.

Onthe Thursday after I saw my general physician and she put me in the hospital the next day for a MRI as she said I wasn’t right

The MRI showed the tumour had returned already after around 11 weeks

i had a second removal with the neurosurgeon believing I would be paralyzed on my left side.

i came out not being paralyzed but it was a lot slower recovery (but after 12 weeks I am back to what I was after the first removal)

After 3 weeks I then started the 5/23 day double dose of chemo. I get tired towards the end of the week but other than that I have no side effects. 

My 6 week MRI scan was clear

Today I have a 12 week MRI done so once again hoping it to s clear or that the chemo is keeping it controlled for the time being.

i have 4 doctors in my team (neurosurgeon, chemo oncologist, general physician, neurologist)who are all fantastic and listen to what my wife and I tell them what is going on.

The neurologist has helped to get my seizure drugs right and I have not had any since the second removal.

I hope you are doing well with your treatment 

Sorry if I dribbled on

 

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Occasional Contributor

Re: 'Bruce' the brain tumour

Hi reach, 

i am in a similar situation, I have a brain tumour, had most removed via an awake surgery in may. I have had radiation therapy for 6 weeks as well as chemotherapy pills ( temozolomide). I will finish my chemo in march next year.  I take 5 mg of cannabis oil most days and have not been sick since I started doing so, the first month or so of chemo and radiation was pretty rough for me, so that's when I started taking the oil. Honestly if you can get it, it will help, I had no energy at all and was sick after most treatments until I started taking the oil... I can't believe this isn't legal, it works wonders. Not to mention the other benefits and conditions it treats/cures. (Anyway I could rant on about that for hours). I hope everything goes as well as possible for you. If you have any questions don't hesitate to ask me... ps my hair is fully grown back now after the radiation, so don't stress too much about losing it, it will come back, it's been 4 months since I finished my radiation. Thanks

Occasional Contributor

Re: 'Bruce' the brain tumour

Hi, my surgery was in December for the biggest tumour on my brain, feeling good, still got another few in there...would like to chat if you want to.
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