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PostPosted: Fri May 25, 2007 9:53 pm 
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Hi there, My name is Gilda, and i currently live in Sydney.
Mum mum three weeks ago presented with some visual disturbances, and just by chance happened to be taking my grandmother to her eye specialist, where she mentioned she had these disturbances. The tests Dr Tim Roberts did show that mum may have a blockage in the brain, and then was sent straight away for a CT scan, which showed that she had 2 tumors on the left side of her brain (frontal and occipitial).
She was then reffered to the neurosurgeon, who immediately addmitted mum to hospital (north shore private). A few days later she had her surgery to remove the small tumor from the frontal lobe.
Her word finding skills are quite a lot worse from this surgery. She has problems finding the right words to say and this is very frustrating.
A week later she had her second larger tumor removed and this surgery was a whole lot easier for her and recovery was a lot quicker.
Chemotherapy started a week after her last op, and so far she is doing well. She starts her radio therapy next week on Tuesday, and she is quite scared about this.
I suppose i would like to hear from other carers or patients about what we can expect from Temodal, will mum loose her hair? She is quite tired, is this from the Chemo?
Has any one else encountered word finding problems after surgery? will this subside?
Our doctors are Prof Philip Yuile (Radio) Dr helen wheeler (chemo onc.) and Dr Michael Biggs (neuro)
If any one has any info or feedback about rehab with speach please let me know, as i really want to get mum reading and writing again so she can feel normal - when she says the wrong words it really frustrates her... any ideas how to combat this... will this go away?

Also if any one is around the Crows Nest area and would like to catch up and swap notes and just be support i would love to hear from you too.

Thanks every one.


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PostPosted: Tue May 29, 2007 1:16 pm 
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Location: Melbourne
Hi Gilda,
My 46-year old partner George has a GBM and is now very ill from it as the tumour is extensive, although he has survived nearly 22 months which is apparently pretty good. He has been through the whole range of treatments - radio, chemo (Temodal, TransMID, Carboplatin and BCNU) but we've now run out of options for him. It's a case of palliative care now.
If we had our time again I would do some things the same but other things differently.
I would get Charlie Teo to operate on your mum as he has a reputation for being less conservative and removing more tumour than other surgeons. He doesn't say he can cure his patients but in many cases he seems to prolong their life.
I would also take a cocktail approach with the medications to fight the tumour from a number of different biochemical angles, and I would be strict with diet and supplements. I would also never have a break from Temodal, regardless of what the oncologist says. As soon as you let these tumours rest they come back with a vengeance. Temodal is well tolerated as far as side effects.
George also had his word-finding ability affected and in his case it did not subside but everyone's different. It's useful to have photos of friends and relatives (and all sorts of things) so you can point to these to get your message across and vice versa.
Focus on the fact that some people DO SURVIVE THIS CANCER and so there's no reason your mum can't be one of them. So go for it!!!!
All the very best,
Joanna


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 Post subject: Thanks Joanna
PostPosted: Tue May 29, 2007 9:52 pm 
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Hi Joanna
Thank you for your reply. Mum has already undergone her 2 craino surgeries. And the surgeon states that he has removed all that he can see.
She started her Radiotherapy today, and she was a real mess afterwards. She was shaken and scared... she was literaly shaking like a leaf.
She will be on temodal for 42 days, provided her bloods are ok.
She had her fisrt chemo blood test today, so hopefully she is ok. She definately doesnt look unwell, just a little scared about what the future holds.
Where was your husbands tumor located... did they do a full resection of it?
What supplements have you tried?
Mum has been on Goji Berries, and i will be putting her on Melatonin and PSK (mushroom extract) and perhaps whey powder.
It seems that the only way to survive this is to attack it from every angle possible.
How is your husband doing? why do you think the tumour has aggresivley returned?
Thanks for your response.
Gilda


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PostPosted: Wed May 30, 2007 10:36 am 
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Location: Queensland, Australia
Hi Gilda,

I wanted to respond to your comments about your mum having problems with word finding.

My mum was diagnosed 2 months ago with secondary brain tumours from breast cancer she had 4 years ago. She was diagnosed after having a seizure and was immediately started on radiation therapy to her brain which has been finished for about 3 weeks. Since then Mum has also been having trouble writing and finding the right words to say. She has given up typing & writing as she gets so frustrated with not being able to say what she is thinking. She is only 53 and not being able to communicate is REALLY getting her down. She is on Dilantin and Keppara and we can't figure out if her problems with speech/words are related to the drugs or the radiation and whether or not these will improve. I think she can deal with everything else but losing these skills has made her feel she's getting worse. Have you found any info about whether speech rehab is the way to go?


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 Post subject: Word Finding
PostPosted: Wed May 30, 2007 8:02 pm 
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Hi Karla,
I have been trying to find speach rehab for Mum, but as yet i have not found any thing available.
The neurosurgeon says that the word finding is due to the surgery, mum had slight word finding problems before the operation, which is much worse now. The neurosurgeon admitted he did make mum worse through surgery - but also said it is very likely to get better - i am noticing every day she is getting better.
He (neuro doc) mentioned that word finding happens due to the surgical swelling, but also radiotherapy causes swelling in the brain too... I would wait about 5-6 weeks after radio to see how your mum goes.
I am trying to get mum to write stuff when she is not tired, as at night time she gets really sleepy, and her writing and reading skills are poor.
So basically i am trying to rehabilitate her myself.
The dilantin may change concentration, but i know that radiotherapy can cause swelling, and therefore cause word finding problems.
When is your mums next MRI or cT scan?
Is your mum on Chemo? did she have surgery originally. When was your mum diagnosed.

By the way did your mum suffer from headaches after her radiotherapy? how did she go... did she loose much hair?

Thanks Karla hope all is well and i look forward to your reply


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PostPosted: Tue Jun 05, 2007 12:31 pm 
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Location: Queensland, Australia
Hi Gilda,

Sorry i have taken so long to reply to your post, have been working too hard i guess.

As mum was getting so frustrated last week with her speech and coordination and we wanted more information we (luckily) got an appointment with the head radiation doctor at mum's hospital in brisbane to get another opinion on the radiation side effects and mum's condition. He was actually great and was very positive and thought mum was exactly where she should have been in regards to her stage of treatment.

More background... mum had surgery in 2003 for the inital breast cancer. This was followed with radiation and chemo in 2003 and 2004. The chemo then was to prevent spread of the cancer, so the fact that 3 years later it has been found in the brain seems to indicate that the chemo was unsuccessful. The oncologist is 'undecided' whether intensive chemo will be of any use this time. The brain tumours she has are different from alot of people's tumours in that they are actually breast cancer cells (i think that's right). They are not recommending brain surgery due to the location and the fact there are 4 small tumours.

The next difficult stage for us will be in 2 weeks when mum is having a new MRI and then a consultation with oncologist and radiologist to assess how the tumours are progressing. If good news and they are shrinking then the next path will be attacking the small tumours she has in her lung and on her spine. Her treatment then will be a whole body approach to stop further spread.

Last week i also found a great neuropsychologist who i spoke to in length about mum's situtition. She specialises in 'acquired brain injuries' and will be able to help mum both emotionally but also understand the brain science of what damage the radiation has caused and help her rehabilitate. The psych's advice was though to wait another month for the brain to settle before she does a complete neurological assessment. I think that will be good for mum and she is looking forward to it.

As for mum's hair, she shaved it off in April. She didn't want to go through it falling out bit by bit again as it did back in 2003 from the chemo. That time, she spent alot of money on beautiful wigs as she didn't want to get around bald but after a month or so she could no longer bear the itchiness and the heat that the wigs caused so she just went bare. She has done the same this time. I don't think being bald worries her, we tell her she looks cute. Also in response to your other question, no headaches from the radiation although the tiredness and all the rest seems bad enough.

So now its about 3 months since the discovery that mum's cancer has spread to her brain. I'm a big believer in alternative therapies and i think if the scan results in 2 weeks show stabilising or shrinkage of the brain tumours we'll go full on with whole body natural therapies of supplements, detoxing and whatever else we find. Although the last 3 months since the diagnosis mum has already made many changes to her lifestyle including switching to organic food (not that she's been eating much), drinking pure water, not working anymore just resting, cutting out chemicals, gentle exercise. I think every little bit helps.

Does your mum live on her own? My mum lives with dad and he's finding it hard getting used to shopping/cooking etc but needs to accept this is the way it is now....

How is your mum feeling this week?


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PostPosted: Wed Jun 06, 2007 6:08 pm 
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Location: Melbourne
Hi Gilda,
In response to your questions:
George's tumour started in the left temporal lobe, in the language area. It was quite small when detected.
The surgeon didn't do a full re-section. George had radio and chemo (Temodal) and that seemed to shrink the tumour right back.
He has at various times been on Salmon Oil, Vit C, Astro-Fort, Melatonin and Evening Primrose Oil. We are not in any way an example of good use of supplements, as George has never taken his condition all that seriously - by that I mean he has stuck his head well and truly in the sand. This also applies to cutting out sugar etc and eating only very healthily - I gave up early on as he is a very independent and stubborn man.
George has not been given long to live now - maybe weeks if he's lucky - but he is doing well at the moment on a drug cocktail of Morphine, Midazolam (an anti-seizure drug) and Maxalon (anti-nausea). ie. it's palliative care and no more chemo. He has survived 22 months so far.
I think that you can be lucky and beat this sort of tumour, and that one mistake we made was to listen to the onco's advice that it was a good idea to have no chemo (a rest from Temodal) for 3 months at one stage after the radio and first 6 months of chemo, as this gave the tumour a chance to re-establish. So my advice would be to never stop attacking it, regardless of what medical advice you are given to the contrary.
Good luck with your mum.
Joanna


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PostPosted: Sun Jun 10, 2007 9:04 pm 
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Hi There,
Thank you for that information.
I do hope that George pulls through, never loose hope.
Good luck, and i will pray for you and your family.


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