Brain Tumour Survivor

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 Post subject: My Husband, Paul
PostPosted: Wed Nov 16, 2005 3:43 pm 
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Joined: Wed Nov 16, 2005 3:01 pm
Posts: 1
Location: Park Orchards, Melbourne, Aust
Paul, my husband had a GBM level 4 tumour removed on 3/11/2005 after having headaches for one week. It is just such a shock. Paul, has never smoked or drank alcohol and is also a vegetarian. Me on the other hand, this experience has made me come so close to opening a bottle of wine at 10 a.m. He is about to start 6 weeks of radiotherapy and Temozolomide chemo. We saw the radiotherapists, yesterday who seemed to think we should be happy to think 30% of patients now survive for 2 years using this combination. Surely there must be something better on offer than this? What about the other 70%.

I have read an article about EphA2 at www.news-medical.net which is talking about a glioblastoma vaccine.

Has anyone got any comments.

Regards, Sue.


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 Post subject:
PostPosted: Thu Nov 17, 2005 8:01 am 
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Joined: Tue Jul 19, 2005 10:12 pm
Posts: 260
Location: Melbourne
Hi Sue,

no one can say how long a particular person will survive GBM, each person is different and will react to treatment differently. As doctors don't know enough about brain tumours yet, it is akin to averaging the lotto numbers and trying to figure out the pattern.

The radiotherapist would be comparing the previous historical results of 5% two year survival in thinking that 30% is good.

The EphA2 protein targeting therapy is in its early days and my understanding is that it is all in vitro (in the dish) and hasn't been tried on mice or humans yet.

There is a lot more on offer, please be sure to read Ben Williams stuff on here, along with others for supplements and other drugs to try adjunctively (at the same time) as the radiotherapy and chemotherapy.

The healthy lifestyle that Paul had prior to diagnosis will hold him in good stead for the journey ahead.

Cheers,

Ross.


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 Post subject: Re: My Husband, Paul
PostPosted: Sat Nov 19, 2005 8:42 am 
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Joined: Fri Jul 22, 2005 1:58 pm
Posts: 50
Location: Woodford, Queensland
Sue, sorry to hear that your husband has had surgery for a GBM. I had my op on 31/12/04 and am still thriving with clear scans and so there is hope for Paul.

I also had TMZ with my radiotherapy, as did a friend I met in radiotherapy who had her op 1/1/05. Jen is also thriving. Interestingly Jen and I by chance recently realised that we are both also using visualisations to hunt down and kill remaining cancer cells - I have an army of Klingons (hopeless Trekkie) in my head hunting down and killing cancer cells which I imagine as helpless white blobs, and Jen hunts them down with her husband and dog (who pees on them).

I am throwing almost everything but the kitchen sink at the cancer, including Celebrex, Cimetidine, Melatonin, Clomipramine - see http://www.sdrt.co.uk/

I am also taking a lot of supplements.

You are right the stats are not brilliant, but as my father taught me, Paul is not a statistic and you should focus on his struggle with hope. I have decided if I am a statistic, I am one of those anomalies that number crunchers hate because I am so far away from the average that I skew their percentages.

Please feel free to email me direct, but could you use belgari68@bigpond.com not the address listed in my profile which I must change.

Mike


Sue wrote:
Paul, my husband had a GBM level 4 tumour removed on 3/11/2005 after having headaches for one week. It is just such a shock. Paul, has never smoked or drank alcohol and is also a vegetarian. Me on the other hand, this experience has made me come so close to opening a bottle of wine at 10 a.m. He is about to start 6 weeks of radiotherapy and Temozolomide chemo. We saw the radiotherapists, yesterday who seemed to think we should be happy to think 30% of patients now survive for 2 years using this combination. Surely there must be something better on offer than this? What about the other 70%.

I have read an article about EphA2 at www.news-medical.net which is talking about a glioblastoma vaccine.

Has anyone got any comments.

Regards, Sue.


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 Post subject:
PostPosted: Sat Nov 19, 2005 8:59 am 
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Joined: Mon Sep 05, 2005 12:58 pm
Posts: 18
Location: Queensland Australia
Hi Sue,

Sorry to hear about Paul's diagnosis. It really sux hey - especially when he leads such a healthy lifestyle, which I also did before my diagnosis in January this year. I couldn't stop thinking - "how could something like this happen!" I was 28 at the time of diagnosis.

As Mike has said - It is so important to remember that Paul is not a statistic. I could only find hope with one dr - my med oncologist, who told me about how they use averages in medical science, but to always remember that there will be some people that are above average and also below average. Like Mike, I believe that I am one of the well above average people who annoy the stats people by skewing their averages way out of wack.

My scans are still clear - yay! I now take 14/14 of TMZ with celebrex, cimetidine and fluoextine. I haven't gone in for lots of supplements and stuff like some of the others have as I wish to keep my treatment program simple and easy for me to manage. Not to say they don't work, its just that you have to choose what is best for you. I also maintain a very healthy lifestyle with organic foods and positive attitude, and the visualisations as Mike mentioned.

Best Wishes to you and Paul.
Jen


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 Post subject:
PostPosted: Sun Nov 20, 2005 3:21 pm 
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Joined: Sun Nov 06, 2005 2:21 pm
Posts: 6
Location: New York, USA
Dear Sue,

Like you I am new to all of this. Our lives were turned upside down on Sept 24th when after 2 weeks of headaches he finally agreed to go to the hospital. My husband David who is 36 had his tumor removed of September 29th, 2005. (Two days after our daughter turned 7). He just completed his second week of radiation and chemo. He is taking Temador 7 days a week and radiation 5 days a week for 6 weeks.

David also lead a very healthy life style. No smoking or drinking. I like yourself feel like crawling into more than just a bottle of wine, but I know that is not the answer. We are truly believers in God. My husband is also a minister at our church. We are believing for a miracle. We will add you to our growing list of names to pray for.

I can tell you I know what you are going through. I know the pain and fustration, but as the spouse you need to stay strong for both of you. I know that this whole terrible experience has made us appreciate eachother so much more. So much we took for granted is now very special to us. We live each day to the best we can, despite the terrible numbers and stats they gave us too. No Dr. is God and can tell you when you will die. That has been our approach. I refuse to live for the next 12-24 months ( our odds according to them) thinking its almost over. We will live happily and lovingly and fight until there is nothing left to fight.

I hope I can be of some comfort to you.
JeanneMarie


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