Brain Tumour Survivor

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 Post subject: Help needed parted 2
PostPosted: Sun Nov 06, 2005 9:39 am 
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Joined: Sat Oct 01, 2005 10:20 am
Posts: 11
Location: Sunderland, England
In 2001, I was diagnosed with an oligoastrocytoma which was
successfully treated. I was diagnosed with GBM in August of this year
of which 90-95% was removed.

About 10 weeks ago I had an MRI which showed that the temodar was
having the desired effect- there was significantly less enhancement.
Last week I had another scan- the tumour has grown and there is some oedema. And I don't know what to do because I had radiotherapy, PCV and temodar in 2001-2 when being treated then- my NO is concerned about my blood counts after all the chemo I've had.

I'm meeting with my NS next week and I think he favours debulking then
gliadel. The NO now suggests some other type of chemo.

I'm very frustrated with my NO...my research indicates that drugs such
as tamoxifen, accutane, cellebrex etc have others helped yet he won't
prescribe them so I don't know what to do...is a very conservative NO.
But I'd like to use a combination of drugs to give myself the best
possible chance. I'm only 24 so that should count in my favour.

By the way, I live in England and my NO says that treatment is more
aggressive in the US, which, if so, is good isn't it? Which are other the
other major brain tumour centres other other than Duke and MD Anderson? And as a private patient from overseas, how much could I expect this to cost? $20k? $50k? $100k +?

I'm getting married to my fiance immimently so I'm very determined to
have many happy years of me!

Any help would be greatly appreciated,
Chris


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 Post subject:
PostPosted: Sun Nov 06, 2005 9:55 am 
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Joined: Tue Jul 19, 2005 10:12 pm
Posts: 260
Location: Melbourne
Hi Chris,

was just about to email you when I read this on the "brain-temozolomide" list, I am so sorry to hear this latest news.

Probably the most promising treatment for recurrence at the moment is Avastin + CPT-11.

My wife Jane is currently on Avastin + Temodal + Procarbazine (not CPT-11 as she had just finished a few rounds of that prior to the latest hospitalisation for radio-necrosis).

Avastin is very expensive, probably about 1000 pounds an infusion which is required every two weeks for a course of six weeks. The CPT-11 should be covered on the NHS (if it is still called the NHS, it's been a while since we lived in the UK).

If you are to go for surgery and wafers be sure to ask questions of the surgeon with regard to their experience with them, correct placement is paramount in their efficacy.

Mate, I really wish you all the best at this tough time, feel free to contact us anytime.

Ross.


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 Post subject: What to do next??
PostPosted: Sun Nov 06, 2005 10:01 am 
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Joined: Wed Jul 20, 2005 4:13 pm
Posts: 48
Location: Sydney.
Hi Chris,

What you are facing with your NO is what many of us have faced here, it may be worthing trying another oncologist. I'm not sure of the cost to be treated in the U.S as a private patient without insurance, but it would be high. A man by the name of John was from the U.K and was able to put a cocktail together for his wife, she sadly did not survive but maybe he could help with an oncologist in the U.K that can facilitate the approach you wish to explore. I will go through my old emails and find his details which I shall forward to you privately.

As mentioned in my earlier reply to your last email, have you discussed PCV again, given that it was helpful a few years ago.

Best wishes

Uschi.


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 Post subject:
PostPosted: Sun Nov 06, 2005 10:41 am 
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Joined: Sat Oct 01, 2005 10:20 am
Posts: 11
Location: Sunderland, England
I've had 2 sessions of PCV and had some success with that (September 2001); CCNU is another option I haven't tried. My NO is concerned that with all the chemo I've had I may end up having problems my with bone marrow.

How effective is avastin + CPT-11? And what about VP-16?

Cheers,
Chris


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 Post subject:
PostPosted: Sun Nov 06, 2005 10:51 am 
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Joined: Tue Jul 19, 2005 10:12 pm
Posts: 260
Location: Melbourne
There are as yet unpublished very positive results expected from Duke for Avastin + CPT-11, plus see:

http://dfw-neuronetwork.com/Avastin_and_CPT-11.htm

Avastin will not effect your marrow much as it is an anti-angiogenesis agent not a chemo. The CPT-11 has shown to be effective when coupled with Avastin, but that is not to say that other agents would not also be effective with Avastin.

If you do google searches for avastin vance, and avastin "cpt-11" you will see a lot of hits.

CCNU is related to Temodal, perhaps it would be best to try an unrelated type of chemo.

Jane has done well on CPT-11, but she has also done well on Temodal and every other chemo too. It is hard to conclusively say that the Avastin has made a difference as Jane has had no tumour visible for more than a year now.

I have no first hand knowledge of VP-16.

What are you white counts like?

Cheers,

Ross.


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 Post subject:
PostPosted: Sun Nov 06, 2005 10:39 pm 
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Joined: Sat Oct 01, 2005 10:20 am
Posts: 11
Location: Sunderland, England
As far as I know, my blood levels are fine but my lucacytes(?) are low although they have been like this for years.


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 Post subject:
PostPosted: Sun Nov 06, 2005 10:57 pm 
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Joined: Tue Jul 19, 2005 10:12 pm
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Location: Melbourne
The Leukocyte count is generally referred to as a White Blood Cell (WBC) count and this count is directly tied to your ability to fight infection.

Further chemo would lower this value and if it has been suppressed for years then there is indeed risk of permanent damage to the bone marrow and the risk of inducing Leukemia.

The reason your NO would favour the wafers is that the delivery of the chemo is local and behind the blood brain barrier, which limits the general toxicity of the BCNU (this is the chemo in the wafers). If surgery is required in any case then it seems a reasonable choice to have the wafers inserted at the same time. (Wafers are very expensive, are they covered by the NHS?)

The Avastin would not effect your bone marrow and could be used as a conjunctive therapy. As could celebrex, roaccutane, and tamoxifen.


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 Post subject:
PostPosted: Mon Nov 07, 2005 12:31 pm 
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Joined: Sat Oct 01, 2005 10:20 am
Posts: 11
Location: Sunderland, England
I really feel as if my NO is doing me a huge disservice...so I'm going to get a second opinion this and have made contact with Duke too. Next on my list of contacts is MD Anderson. I feel that doctors here are too conservative yet the Americans are more willing to take calculated risks.

Glidel isn't available on the NHS but we are insured so could get that way.

Do the doctors in Australia take much persuading to prescribe drugs such as celebrex, roaccutane, and tamoxifen? I am just sooooooo frustrated with my NO...this is my life, not some experiment!

Is avastin successful in its own right it or is it better to take with chemo?

Cheers,
Chris


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 Post subject: Frustration with NO
PostPosted: Mon Nov 07, 2005 5:54 pm 
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Joined: Fri Jul 22, 2005 1:58 pm
Posts: 50
Location: Woodford, Queensland
Chris, how do you get on with your GP. I take Celebrex for my knees (too much horse riding) and Cimetidine for reflux. I have a GP who specialises in working with Caner patients who prescribes very high dose melatonin for insomnia, though you can get this over the net

Also are you aware of the work being done on Clomipramine sponsored by the Samantha Dixon Research Trust based in London.

I would also add Curcumin to you Protocol.

Below is my Protocol
Vitamin C injection 14 grams each fortnight
Cimetidine 800mg per day
Celebrex 400 mg per day
Clomipramine 150mg per day
Melatonin 20mg per day

Supplements
Lymphodran 6 tabs per day
Tresos B
Withania two tabs a day
Anti-oxidant two per day
Fish /EP oil 6 caps per day
Genestin 2000mg per day
Bromelain 1000mg per day
Five Mushroom extract 3ml per day
Curcumin 3000mg per day
Calcium 600mg per day
Zinc 25mg per day
CoQ10 360mg per day
Vitamin C powder 2-3 grams per day

I had surgery for a GBM IV 31/12/04.
Providing the news is good Wednesday when I get results of latest MRI, I am doing great.

I am about to go onto a different protocol with Temozolomide 14 days on 14 days off at a lower dose instead of 5 days high dose every 28. plenty of emerging evidence that these extended protocols lead to better outcomes

Feel free to ask for more help, we are here to help each other.

Never give in, never surrender and never, ever give up hope.

Mike Gabriel


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 Post subject:
PostPosted: Mon Nov 07, 2005 6:06 pm 
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Joined: Tue Jul 19, 2005 10:12 pm
Posts: 260
Location: Melbourne
Chris_Snaith wrote:
Do the doctors in Australia take much persuading to prescribe drugs such as celebrex, roaccutane, and tamoxifen? I am just sooooooo frustrated with my NO...this is my life, not some experiment!

Is avastin successful in its own right it or is it better to take with chemo?

Cheers,
Chris


Hi Chris,

Doctors worldwide are conservative, we hear about the ones in the US that are more open to cocktails and newer therapies because their numbers (pop) is higher and the "industry" is based there. People are loath to name their oncologist online (publicly) as there are ramifications for those that play at the margins.

Perhaps someone here from the UK might be able to email Chris privately about a sympathetic oncologist/GP in the UK? (I really hope so.)

Avastin has been very successful in various tumours on its own, but I have only heard of it used in combination for BT patients.

Cheers,

Ross.


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 Post subject:
PostPosted: Mon Nov 07, 2005 8:24 pm 
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Joined: Tue Jul 19, 2005 10:12 pm
Posts: 260
Location: Melbourne
Chris_Snaith wrote:
Do the doctors in Australia take much persuading to prescribe drugs such as celebrex, roaccutane, and tamoxifen?


Sorry Chris, I didn't directly answer your question - Yes it is just as hard in Australia to find a doctor to prscribe such a cocktail as you are finding it in the UK. It took us a long time to find ours.

I understand your frustration, it is hard enough to fight a tumour without having to fight for treatment.


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 Post subject: UK Oncologist
PostPosted: Mon Nov 07, 2005 9:46 pm 
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Joined: Fri Jul 22, 2005 1:58 pm
Posts: 50
Location: Woodford, Queensland
Chris I have emailed my Dad who is friendly with a Cancer specialist in UK who has been giving me advice via Dad. Hopefully will establish direct contact with cancer specialist in next day or so.
Mike


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 Post subject:
PostPosted: Wed Nov 09, 2005 9:30 am 
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Joined: Sat Oct 01, 2005 10:20 am
Posts: 11
Location: Sunderland, England
Thank you so all much for all of your help


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 Post subject: Glad to help
PostPosted: Wed Nov 09, 2005 11:44 pm 
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Joined: Fri Jul 22, 2005 1:58 pm
Posts: 50
Location: Woodford, Queensland
Chris, this site exists thanks to Ross. This site along with another OZBrain Tumour constitutes the meeting place for a number of us on this unfortunate journey, a place to support each other, share experiences and learnings, along with information. Welcome to our band of brothers and sisters
Chris_Snaith wrote:
Thank you so all much for all of your help


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 Post subject: Website
PostPosted: Wed Nov 16, 2005 2:33 pm 
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Joined: Wed Oct 26, 2005 1:02 pm
Posts: 7
Location: Forest Lake, Qld
I would like to thank Ross Symons for his work on this website.
It has helped me to come to grip with the complexity of the treatment for Glioma's. I was diagnosed with a brainstem GBM las XMas and I am doing reasonable well. I have had a full dose of radiotherapy and now I am on 5 days per month Temodal. I use a coctail of prescribed and herbal drugs like Primrose, Selenium and Melatonin and have just started with Celebrex. My treatment seems to work as my last MRI showed virtually no tumour. My diagnosed (24/12/2004) tumour was 20mm. I follow the treatment philosopy of Ben Williams.
Regards
Dirk


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