Brain Tumour Survivor

A site dedicated to leading edge treatment for brain tumours
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PostPosted: Tue Jul 20, 2010 3:30 pm 
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Location: Whangarei, New Zealand
This story comes from New Zealand with a great outcome. It followed a conventional treatment pattern but was enhanced by beliefs resulting from research into what can be done to help the patient. It may not be classed as 'leading edge' but I just want people to know what was done as I'm sure it will help. It has for us.
My wife was diagnosed with GBM4 in May 2009. She had to be operated on immediately which included a helicopter transfer from where we live to Auckland - 2.5 hours drive away. It was operable fortunately but the prognosis we got was poor. The operation was very successful with no defects. She began Radiotherapy with combined Chemotherapy 4 weeks later. She then suffered hair loss and a low platelet count with her first 5 day Temodal course which curtailed ongoing treatment.
She is a senior nurse (59) with 40 years conventional training so wanted to go down the conventional path. She also followed a researched nutrition strategy to enhance the treatment which she still follows.
She has now had 3 MRI scans, all showing the tumour completely gone. Her hair has regrown, her blood counts are normal, she has been back at work for 9 months now and is completely back to normal - piano, tennis, driving, everything. That's 15 months now.
So after that initial treatment, she has completely relied on the diet she followed. A tumour is 'cells going wrong' basically so we decided that it must be possible to get them right again. It would appear we have but who knows, some luck for sure, but a lot of others with cancer seem to have done it too. Food is critical to how the body acts I believe.
I have written up a 5 page document covering exactly what we did which I am happy to make available to anyone wanting it. I don't know if this site has such a facility, maybe someone will know.
It is early in the recovery path so we're told but we have some confidence now. Our Oncologist is happy but I don't think he is convinced anything we have done has had any real effect. I'm sure it has.


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PostPosted: Tue Jul 20, 2010 10:06 pm 
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Welcome to the site!

Your wife sounds like a wise woman. I'm sure all her experience would have helped.

Complimentary medicine takes the best of both worlds. Medicine is an acute treatment for a chronic disease. Why not have chronic treatments to compliment too - nutrition, exercise and supplements?

Ross Symons (site creator) posted Jane's daily schedule to a website and then posted the link. So I'm assuming that would be the way to go.

Anyway glad to hear that shes going great guns - you must be very proud :).


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PostPosted: Thu Jul 22, 2010 3:38 pm 
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Location: Whangarei, New Zealand
Thanks for your welcome and advice about how to post the full story.
I have loaded it on for anyone to read. It is exactly what we did but I'm not saying it was all that can be done. I hope others find it useful.

Site is: http://tinyurl.com/25phtx4


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PostPosted: Thu Jul 22, 2010 10:14 pm 
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Nice work! Well researched and thought out. Thanks for sharing it here :).


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PostPosted: Tue Aug 31, 2010 10:26 am 
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Thanks so much for that; it's wonderful to read about a fellow GBM4er doing great!


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PostPosted: Thu Sep 30, 2010 10:29 am 
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Yesterday (29 Sept) Denise had her regular 3 monthly MRI scan. It seemed it was slightly more comprehensive this time according to her as it was more complex and took slightly longer.
The doctor said that she found it "very reassuring, with no evidence of any tumors anywhere". How wonderful is that!
This is the 4th MRI scan that has been completely clear now so she has gone over a year with no recurrence - 18 months since the operation.
You just gotta believe in this nutrition strategy which we follow and continue to encounter in lots of my recent research. It just has to be part of any treatment approach that a person takes as it gets the body back into control and reduces the body's load. I'd love it to be compulsory as it helps so much yet it allows you to follow other ideas you may want to follow, orthodox or not. It may be enough as it seems to be with Denise.
We have changed from Coral Calcium to Complex Calcium/Magnesium/Phosphorus (500/250/250 mg per day) as I was unsure about the effectiveness of the former. With the diet it results in about 1000mg calcium per day. Also now take Vitamin D3 - 5,000 iu every second day.


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PostPosted: Thu Sep 30, 2010 11:17 am 
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Great news it keeps getting better!

I'm a big advocate of nutrition, exercise and vitamin D3. Hope that she is getting some sunshine too.

Even though I am doing these things I count myself as lucky too. All these measures help. What they add up to is giving the best chance of the prevention of recurrence. I know that I am living with the best quality of life.

As for making it compulsory... I was disgusted by the food they served in hospital let alone the whole junk food industry. I heard a conversation between two patients on nutrition. They said that they loved this food too much to give up. I couldn't believe what I was hearing - they would die rather than stop eating this rubbish - if that is not the definition of addiction I don't know what is!

Unfortunately, these same patients had to be cautioned to do the minimum amount of physio required. Not trying to be too judgemental but I look at most doctors and do not find them to be exemplars of health professionals - leading by example. Most seem to live the same lifestyle as the rest of the population. They almost never give advice on nutrition.

I think that there is a real need for education. That more than 50% of calories consumed are empty calories. It has taken cancer for me and others to realise this. This is why I am so keen on the research and providing evidence to support the anticancer lifestyle. Now if we could just get to the stage where 80% of cancers are prevented initially because the modern lifestyle that leads to cancer changes...


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PostPosted: Fri Oct 01, 2010 11:44 am 
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Keep the good news coming!

Quote:
I was disgusted by the food they served in hospital let alone the whole junk food industry


Amen to that.

I have attended several brain cancer related forums where muffins and cakes has been offered... (including a Dr Gawler presentation in Sydney and a brain tumor support Group at Royal North Shore Hospital. The Gawler incident occurred because no one apparently briefed the caterers what Gawler was about, and the RNS incident, well, I assume that was because " food hasn't got anything to do with cancer". Right.

What amazes me is that the whole body/mind/spirit approach to fighting cancer is intuitively and logically common sense. If your body has to deal with cancer treatments and fight cancer, the fitter, and healthier, and calmer you are, the better chance you've got. I can't see how that proposition can be disputed - especially, since there is research out there that backs this up ... It's a funny old world.


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PostPosted: Sat Oct 02, 2010 1:21 pm 
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Hearcam, just a quick question:

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Also now take Vitamin D3 - 5,000 iu every second day.


How did you come up with this dosage?

BTW I just reread your overview, and just as a side note regarding low platelets during chemo. When I was doing my six cycles, I had a similar issue, and oneof the registrars let it slip that the hospital's GBM4 guru had a theorythat low platelets was an indication that the chemo was working. As you suggested, getting hit hard by chemo isn't necessarily a bad thing. Doing the full six cycles at full strength doesn't provide any guarantees.


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PostPosted: Wed Oct 13, 2010 7:35 am 
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I had done some research on vitamin D and realised that we might well be on the low side as we tended to cover up against the sun as everyone is encouraged to do these days. We play tennis and walk lots in the sun but maybe the skin exposure was low. We will aim to get more from now on.
I read "The Vitamin D Revolution" by Soram Khalsa which I found believable. I think he talks good sense about the likelihood of low levels and he recommends a level of 40-70 ng/ml as optimal, 70-80% of people he tests he has found to be deficient (<20). This is much higher than conventional thinking but conventional thinking doesn't fill me with confidence about lots of things medical.
The best thing is to get tested (25-hydroxy Vitamin D blood test) but toxicity of Vitamin D occurs rarely and requires levels > 150. His guide suggests 2000iu per day (14000/week) on a safe ongoing basis. I get 5000iu gel tabs from iherb.com cheaply, 1 every 2 days, 5000 x 3.5 = 17500 - slightly higher but better to keep the level up and easier to remember. Miss the odd one and it doesn't matter. How's that for wonky logic! Some reading suggests that 5000/day is ok. Apparently building up and holding after 40ng/ml or so takes more and more intake so it is a fairly safe approach I think. I'm open of course to other opinions about this.
I had some misgivings about chemo and, honestly, was pleased that Denise didn't undergo the full course. The battle of the body coping with it from some of my readings filled me with deep concern. I wondered what does the chemo do if the tumour cells are gone or under control - does it just rush around looking for other (nasty) things to do?
Ty Bollingers book "Cancer - step outside the Box" is a chilling read in relation to this. I'm reading it for the second time now I know more (I do recommend it as long as you can handle strong alternate views).


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 Post subject: Diet
PostPosted: Wed Oct 27, 2010 8:14 pm 
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Hi- I suggest you also read David Servan Scheiber's book - 'Anti Cancer a new way of life' and Richard Beliveau's book 'Foods to Fight Cancer'. Richards book is a little more practical , but David's book gives the epidemiological basis for the suggestions.
Good Luck! - Bob


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 Post subject: The Best Xmas present.
PostPosted: Sun Dec 26, 2010 5:56 pm 
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Denise had her regular 3 monthly MRI scan on 22nd December 2010.
The doctor reported it as "yes, good, it's just like the last one" so he's pleased.
Pleased! That's bloody wonderful, it's amazing - that's 5 scans now with no evidence of any tumour activity anywhere!
I hope my use of enthusiasm doesn't upset anyone, it's only that we don't get much delight fed back to us from this fine body of clinicians, just, well, constrained pleasure. Maybe they aren't allowed to get too happy. We haven't seen Denise's original Oncologist for a year now, each subsequent visit is with the Oncology Registrar, a different one each time. This, I suppose, is a good thing - we are now in the low priority holding pattern. She now goes out to 4 monthly scans and no more monthly blood tests.
I find it surprising that none of these registrars has asked anything about what Denise is doing to help herself. Ok, I happily concede that the initial treatment dealt strongly to the tumour, but that hasn't addressed the underlying cause. As you would be well aware I think that the reason the cancer was fully removed and is being held at bay is because of our lifestyle and nutritional approach. Remember we are being quite simplistic in what we do - FO/CC, veggie juice, high fruit, high veggies, low nasties, Vitamin D3, exercise. Is this the answer then? Keep it simple?
I now feel so mixed when I post these updates because I love to do it for encouragement but feel sad that many others are not getting such positive early results when they obviously deserve to.
I wish you all well for the festive season. Dave.


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PostPosted: Sun Dec 26, 2010 6:17 pm 
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I love hearing good news, especially around this time of year :).

I can remember the relief when blood tests were over. You have much to be pleased about. I like the simple approach. I also keep to a low information diet. There is so so much useless information out there and I ignore most of it.

Simplicity is one key to less stress. The volume has turned down on many things that are not a priority. Health is my number one priority. Although, change is a key attribute to success. I recognised that I had to change, otherwise I couldn't expect a different result.

Well done on recognising the need to change. Keep the good news flowing!


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PostPosted: Thu Dec 30, 2010 3:16 pm 
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Come on let yourself be happy. Every day is a blessing, and your wonderful wife is an inspiration for everyone!


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PostPosted: Sun Apr 24, 2011 10:00 pm 
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Denise had her regular MRI scan last week (now 4 monthly). It was clear once again so that is just great. The doctor wouldn't say that everything has gone as there is an area where the tumour was removed that is still there but he did say that it appears brain is 'growing back in' to the area. No evidence of anything untoward.
Denise continues to be very healthy and is starting to believe that the approach we are taking is really, really important. She has 'gone along with it' up til now but remember she is a 40 year trained senior nurse so it is hard for her to step aside from the conventional. It's easy for me as I am not medically trained and, as an analyst, was able to research and comprehend how strong the argument is for this non-medical, nutritional anti-cancer approach (I just want everyone to do it, please).
Denise takes Vitamin B12 tablets (sublingual) as that was a concern I had that we both were not eating much that boosts B12 and she had a low count in times gone by. Her latest blood test shows that she is at the high end of the normal B12 range which just shows they are very effective. I take them too.
So the next target is as a 5 year survivor which the medical people might then take heed of. As a 2 year survivor on no drugs with no deficits they still show no interest in what she is doing but I should be used to that now.
Who cares, we're happy, we're confident, this works.
Dave


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