Brain Tumour Survivor

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PostPosted: Mon Sep 06, 2010 8:54 am 
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Location: Brisbane Australia
Hi All
I joined this group several months ago when my wife, at the young age of 50, was diagnosed with an AA3. All the norms followed, surgical sub total resection, radiation for six weeks, then straight onto Temodal. Heather was really fit and healthy during all this and out of the blue, after 8 cycles of Temodal, really bad headaches started. An MRI revealed her orginal tumour has regrown and a new tumour, bigger than her first has sprouted. Now a GBM 4. Our neurosurgeon said surgery was not an option and obviously the chemo had not worked and the only treatment left was Avastin. This was a terribly scary time for us and they doectotrs all semmed very panicked about the situation. They didn;t say anything except that there was a rush element in everything they said and did.
They all went to great lengths to keep us calm and went extrodinary lengths to covertly find out of we could afford the $3800.00 per infustion. PBS does not cover Avastin for Brain cancer.
We went ahead regardless of the costs and Heather just had her second Avastin infusion. So far she is feeling much better, almost fully normal she says, and no apparent side effects. It seems to be the norm for no statistics to be given or offered about the success or failure of this drug and there is little info on the net about it for Brian cancer. I think it is relatively new for this application in Australia.
Heather is feeling good, no headaches, no more lethargy and she thinks this drug has beat her cancer after a few infusions.
There is no chemo being given during this treatment and just a moderate dose of Dexmethasone till the swelling subsides.
Is there anyone out there who knows how well or not well this Avastin works? Is this the drug we have all been waiting for, or just a time buyer?
This first round is six treatments, what happens after this?

Thanks Michael


Last edited by MichaelA on Mon Sep 06, 2010 3:20 pm, edited 1 time in total.

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PostPosted: Mon Sep 06, 2010 9:08 am 
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Location: Sydney, Australia
Hi Michael,

I suggest you speak to Dr Helen Wheeler at RNS/NSP. She's probably had more experience with Avastin for recurrence than anyone in Australia. She was using when other oncologists were ridiculing its use for brain tumours.

Outcomes vary, but I have heard of someone being apparently cured after recurrence. I suggest you listen to Dr Wheeler's recent speech:

http://www.cancerinstitute.org.au/cance ... ions3.html

I was on it for a year as part of experimental first line treatment. Towards the end I started getting the classic side effects (protein in urine), but boy, I got damn lot of Avastin into my system alongside the gold standard treatment.


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PostPosted: Mon Sep 06, 2010 9:36 am 
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Location: Brisbane Australia
Thanks Morpheus.

I have tried calling interstate specialists with never any luck. I understand that they have their own patients and it is far too difficult to offer "no obligation" advice over the phone of email.

Sometimes I just want some reassurance and some of these doctors to "have a heart". Litigation is the preventing factor.

Michael


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PostPosted: Mon Sep 06, 2010 3:54 pm 
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Joined: Mon Mar 10, 2008 4:03 pm
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Location: Australia
Hi Michael,

Thanks for sharing your Heather's story with us. There is not likely to be one treatment that will fix her cancer. That's the bad news.

The good news is that even high grade tumours respond to chronic treatments. I discovered after my chemotherapy had finished that there are lifestyle factors that can make a difference. Even better most of them don't have to wait until after she has received all acute medical intervention.

With the advantage of hindsight, if I was in her situation there are a few things that I would do:

1. Buy some vitamin D3 supplements and get her to spend 15-20 mins in the sun as many days as there is sunlight; without sunscreen.
2. Purchase the book "Anticancer" by David Servan-Schreiber, a brain cancer survivor himself.
3. Eat more fish and take fish oil tablets.
4. Eat 9-11 servings of fresh fruit and veges a day minimum.
5. Drink green tea and take green tea extract.
6. Exercise daily and try meditation or deep breathing.

There are many more things - see the research section of this site.

80% of cancers are preventable. Assume that she is in this position and act accordingly. There are no guarantees, but any increase in the quality of her life is worthwhile. Together the aim is now to prevent recurrence.

I wish you all the best. Please keep posting :).


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PostPosted: Wed Sep 08, 2010 7:51 pm 
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Location: North Qld
My husband (39, GBm4) has been treated with Avastin for the last 2 months. I think we are up to infusion number 5, with the latest MRI showing successful treatment signs. However, side effects have been worse with numerous chest infection, eye infections, ulcers, and needing blood transfusions (which is a first for 27 months of continual chemotherapy of one form or another).

Our oncologist is treating hubby with Avastin and Irinotecan. Let me know what else you would like to know, be happy to share any knowledge I have :)


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 Post subject: Thanks
PostPosted: Thu Sep 09, 2010 7:35 am 
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Joined: Mon May 10, 2010 12:31 pm
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Location: Brisbane
Thank you for that. Heather is due for infusion number three this coming Monday. So far she is feeling very well and no apparent side effects. She has always been tough though, never giving in to symptoms or hiding from life. The Dex is messing with her a bit and we have begun tapering (thanks John P) so the pyscho dreams should start to ease and Heathers eating habits may return to normal. Every day we start the day with the famous words from the Batman movie- "and here we go".
By the way, Credit Union Australia Private Health fund- great people, very compassionate and they help fund Avastin!
Good health to all!


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 Post subject: It's Working
PostPosted: Mon Sep 13, 2010 4:57 pm 
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Hi All

Heather had her third Avastin infusion early this morning. An MRI done last Thrusday was reviewed this morning. I never go much on what the radiologist says on the MRI reports and our surgeon interprets them more realistically, BUT, the MRI showed a 20% shrinkage in Heather's orginal tumour and a 11% shrinkage in her latest tumour. The report said "exceptional response" to the Avastin. This now gives my darling some joy that this treatment is giving us some time. No side effects at all so far and our neorologist has begun tapering the Dex in a big way. Down from 4x4mg per day to 1 x 4mg per day this week and then 1 x 2mg per day next week. Heather had seizures in May that cost her her drivers licence and since she has been seizure free since (thanks to Keppra and Epilim) the doc said she can now drive again a little at a time. For Heather it is like Christmas ten times over all in one day!

Boy, this terrible disease really makes you appreciate the little things in life that we all used to take for granted.

Good health to all!


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PostPosted: Mon Sep 13, 2010 8:52 pm 
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Joined: Mon Mar 10, 2008 4:03 pm
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Location: Australia
Great news!

I know what its like to be without a licence - I had a year of being driven around before I regained my freedom. Like most things you don't realise how much you miss it until its gone. The only advantage I have now is disabled parking.

Fingers crossed it keeps working as it has :).


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PostPosted: Fri Sep 17, 2010 11:35 am 
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Location: Sydney, Australia
Michael, that's great news to hear that Heather is responding well!


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PostPosted: Fri Sep 17, 2010 11:39 am 
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Location: Sydney, Australia
Michael, just be careful about Green Tea and Avastin:

http://lungcancer.about.com/b/2010/01/1 ... atment.htm


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 Post subject: Green Tea
PostPosted: Fri Sep 17, 2010 11:59 am 
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Thanks. Heather is a self confessed coffee lover and not much on the green tea. She does love a cup of weak black tea. I wonder how they were able to isolate Avastin users and green tea drinkers to the point were they know green tea is not so good for them?
She would be in a lot of trouble if red wine, chocolate and pasta were taken off the menu though. :)


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PostPosted: Tue Oct 12, 2010 5:44 pm 
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Location: Australia
Michael,

Your wife’s story reminded me of some articles I’d posted a while back (see copied below) . While those who respond to Temodal will sing it’s praises, brain tumour treatments are not a “one size fits all solution” – even though doctor’s use the “evidence-based” argument (ie. x % of people respond to the drug). Some drugs that help one person can make another’s tumour progress. Some experience minimal side-effects and others relatively few. That’s why it’s important to monitory any drug treatment for effects while on the treatment as a guage for any individual.

Also the drugs that are approved by the TGA for a particular treatment are often the first line of treatment as doctors are reluctant to mention drugs that are not subsidised and at a high cost to the patient. Often what happens is that by the time a drug comes to the market after 10 years of clinical trials and scientific reports and applications to the TGA to approve the drug, the patent has almost expired (although they charge big dollars for the drug while the balance of the patent period remains to recoup their investment in clinical and scientific studies and application processes with drug regulators) Hence any future uses for the drug even if found through experimentation or as a last resort type trial, are not much use in terms of getting the drug approved for that purpose. The drug companies are only interested in investing money in clinical trials for drugs they have a patent on if the duration of the patent period allows sufficient time for clinical trials and related drug approval processes (so they can make big dollars in sales) and the TGA is a cost-recovery agency and only interested in those drugs or drug companies that are prepared to pay it’s hefty fees for approvals and then Committee consideration to have it included on the PBS.

I’ve had a similar experience and the drug I’m on to stop the growth of my meningioma is not available incl for that purpose and at a cost of thousands of dollars per year while I can afford to pay for it – when I can’t that’s just too bad.

Even if you find the drug is useful for you, the government won’t subsidise it under existing arrangements and that’s been the case under the Liberals for 10 years and since Labor has been in government. No change to the drug approval, PBS approval process. I guess not all taxpayers are equal, some end up with subsidised drugs to keep them alive (at phenomenal cost to the taxpayers) and others (who have paid an equal amount of tax over the years) have to pay for their own drugs to keep themselves alive. Those that can’t well they won’t stay alive so why worry about their votes anyway?...........

Mary




Brain Tumor Drug (Temodal) May Help Spur Cancer's Return
http://www.nlm.nih.gov/medlineplus/news ... 81362.html
March 5, 2009


Avastin increases survival rates in recurrent glioblastoma affected patients
http://www.news-medical.net/news/200909 ... ients.aspx
3. September 2009


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 Post subject: 5 down
PostPosted: Wed Oct 13, 2010 11:04 am 
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Location: Brisbane
Thanks Mary

Heather had her 5th Avastin infusion on Monday just gone and a review of an MRI that was done late last week. The reduction in size of both her tumours initally was 15 - 20%. This last MRI showed an increase in size of the tumour in her left temporal lobe on the temporal horn and her initial tumour in her right frontal lobe was stable. The oncologist said that they are stable and to contuniue on with the Avastin. Luckily so far there have been no visible side effects from the Avastin and he advised to continue past the initially decided 6 treatments to make it ongoing. Again luckily our health fund have been kind enough to help cover the first six treatments and I believe Roache do some sort of deal for the ongoing treatments if a positive result is evident.

No one has mentioned more chemo or supplementary treatments, just the Avastin.

A friend of mine was recently complaining about how much his life sucked because of all the rain in Brisbane lately, he was fighting with his wife over where to holiday at Christmas and how his dog was getting hair all over his furniture..........I just smiled to my self and thought ....I WISH!

It's been a year this week since Heather had her first seizure from out of the blue........a year I wish no one ever has!


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 Post subject: Chin up
PostPosted: Wed Oct 13, 2010 2:42 pm 
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Location: Australia
Michael, pleased to hear your wife is stable on this latest treatment.

It is when something like this happens that all other problems become so miniscule and the hope of getting back to a stage where relatively trivial annoyances in life is all that you have to deal with (some people don't know how to count their blessings).

Chin up and great to see a fellow brain tumour patient has such a caring and supportive husband on hand. It takes a lot of patience and emotional energy to deal with all this stuff. It's not easy so don't forget to take some time out to enjoy the things you both enjoy to do.


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 Post subject: I dont know about that
PostPosted: Wed Oct 13, 2010 3:00 pm 
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Mary, I wish I was a better person because at times I think why me, why us? I have not had a day off in the past year that didn't involve taking Heather somehwere for a treatment, consult, MRI or doctors appointment and sometimes, just sometimes, I think crap.....here we go again. Then I just look at her and think......well for 25 years of marriage I never ever had to take time off work due to her health, not for a cold, the flu, a sickness with our kids, nothing. Then I feel a right jerk.
Sometimes I wish I could go guilt free somewhere by myself that does not involve a doctor.......again I fell a right jerk. Sometimes I cry like a baby because on the drive home after a 10 hour day at work I can look forward to cooking and taking care of Heather and yes.........again I feel like a jerk.
It's a bit like the book you look for when you have kids......the "how to" manual. I needed and still need a how to manual on what is coming in our future. Luckily Heather has adopted an "I am going to beat this and I am going to get better"attitude. Deep down I know in my heart of hearts that she may very well not and I am yet to speak to a long term survivor. When you do find one, all of a sudden they stop posting and you get a private message saying the person has passed. So far, just on this forum, I have go two of those.
But for now we are ok, trying to get on with things as normally as we can, whilst all the while I am crumbling inside always getting glimpses of the inevitable. Some say damn the statistics and I agree to a certain extent, but I am still very scared.
Thankfully I dont show this to anyone, nor tell anyone, I just have these alone feelings alone.
Thanks and take care.


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