Brain Tumour Survivor

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PostPosted: Sun Oct 01, 2006 11:19 am 
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Location: Melbourne Australia
My sister 37 in NZ 3 months ago had a Grade 3 Oligodendroglioma tumour removed. She has just completed 30 days raidiation. She has been told she has about 3 years to live. I'm new to all this and am looking for information on new therapies - anything that I can investigate and perhaps suggest to her Doctor when I get back to NZ. Any help would be appreciated.


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PostPosted: Wed Oct 11, 2006 9:03 am 
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Location: NE Victoria
Hi Leebee,

I have just discovered this site and dont know if I can help too much. My wife is 33 and has been also diagnosed with an Anaplastic Oligodendroglioma (Grade 3). She had surgery to remove the tumour in June 06 and will be commencing her first cycle of chemotherapy tommorrow. The oncologists debated about whether she should have radiotherapy or chemotherapy first and basically decided that one was no better or worse then the other. Her chemotherapy is referred to as PCV treatment and comprises of 3 different drugs (Procarbazine, Limostine, Vincristine). As I am unaware of the location of your sisters tumour and wether or not they managed to completely remove it during the surgery, it is difficult to offer any sound ideas. But maybe you could find out some basic info as follows - Someone should have undertaken what is referred to as a FISH analysis on the tumour when it was removed at surgery. This genetic analysis should reveal an absence or presence of alleles 1p and 19q in the tumor. An absence of 1p and 19q can be beneficial for overall long term survival and it is also known that these tumors are highly sensitive to chemotherapy. Chances are they would want your sister to have a break from radiotherapy and wouldnt commence any further treatment unless the tumor recurred. I also find it surprising that they have given her a specific time frame. Where did she have the surgery and who is her neurosurgeon? Thanks for the opportunity to chat to someone else who is looking for some help. Hope this helps in someway.


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 Post subject: Thanks Aaron
PostPosted: Wed Oct 11, 2006 11:33 am 
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Location: Melbourne Australia
hi Aaron thank you for your response.

My sister is being treated at the Wellington Hospital in NZ her Oncologist is a Dr Hamilton.

We have had conflicting information right from day one, but aparently they did managed to remove her 7.5cm tumour which was located in her right frontal lobe. She completed 30 days aggressive radiation. There has been a lot of testing done on her tumour, one of which was going to find out if chemotherapy would be successful but as you thought they are not offering that at present. She is being scaned again in Nov.

What her Doctor has told her is that a vast percentage of people with her type tumour sucumbe to the desease within 5 years from diagnosis.

I am currently trying to relocate to NZ with my 4 year old but of course that means I have to win the right to do that in a court (first hearing next week). So I am lacking further details of what the tests actually found as I'm not there to ask and my sister doesn't want to know, she basically told the Doctor that she only wanted to know when she was required back in Hospital to debulk it.

My sister asked her Doctor about the Ian Gawler diet (which I had obtained for her) and he told her not to worry about it if she wanted to drink 'coke' or things like that, just to do what she wanted. Eat what she wants, drink what she wants. And that Ian's diets etc unfortunately didn't work on brain tunours. He sounds quite a defeatists and really hasn't offered her much hope.

Thank you again for your help I will take your information and try to find out more about what the tests revealed on her tumour. I will let you know of anything else I find out, but as said I believe they are letting her be for the moment.

Best of luck to you and your wife, the burden they carry is huge and I guess all we can do is hope and pray reseach finds a cure or our loved ones receive a miracle. There is always hope.

Regards Belinda


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PostPosted: Wed Oct 11, 2006 11:56 am 
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Location: NE Victoria
Belinda,

Sounds as though there are a lot of unknowns at the moment. I have read about different prognosis and the studies vary considerably for Oligodendroglioma Grade 3. As difficult as it is I wouldnt be paying too much attention to 'average survival times' as they may tend to be a little rubbery and each individual case is different. I would really encourage you to find out the answers to the initial questions that I asked you in my first reply. It would also be beneficial to know if your sister has had neurological side effects as a result of the tumor prior to surgery. i.e. loss of movement down her right side, and speech difficulties. My wifes tumor was 3cm x 3cm in the front left lobe. She was first diagnosed in Feb 04. She was 23 weeks pregnant and had a major seizure, yadda, yadda, yadda. Regardless she is doing ok and battling on. The fact that she (& your sister) are both young is a good thing, which means that they are ina better position to fight the disease. Our neurosurgeon was Dr Michael Besser at Royal Prince alfred hospital in Sydney. I cannot speak more highly of him and would suggest that you possibly seek a second opinion regarding any further treatment. But for now, you probably need to help her regain her strength and help her to maintain a positive attitude. Say no to defeatist oncologists.


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PostPosted: Wed Oct 11, 2006 8:24 pm 
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Joined: Sun Apr 16, 2006 3:57 pm
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Location: Wellington, NZ
Hi Belinda

We live in Wellington where my wife Lynda is being treated at the Cancer Centre at Wellington Hospital for a grade IV brain tumour. Does your sister know that there is a good support network for brain tumour patients in Wellington, including a support group based at the Cancer Society in Newtown? If she feels up to it she can call the Cancer Society and arrange to come along to the next meeting. Some members of the group also have oligodendrogliomas.

The weeks immediately after diagnosis are a steep learning curve. It certainly doesn't help when your oncologist has a defeatist attitude to start with. We were given a similar message about diet, but Lynda has ignored it and has changed her diet as well as adding a range of supplements. We went to see Ian Gawler when he came to Wellington recently. We think it is absolute rubbish to say diet and supplements don't work for brain tumours.

Please tell your sister she is welcome to contact Lynda at home on tel (04)9738997 if she wants a chat.

Chris
Wellington, NZ
h/o Lynda, 41, dx GBM IV (left posterior frontal lobe) in Mar 2006
proud p/o Cassandra (13), Nathan (10)
9 Mar 2006 resection
14 Mar 2006 pathology confirmed giant cell glioblastoma
18 Apr - 30 May 2006 30 fractions radiation plus daily Temodal @ 75mg/m2
26 Jun 2006 1st cycle adjuvant Temodal on 5/23 schedule @ 150mg/m2
20 Jul MRI result inconclusive
24 Jul 2006 2nd cycle adjuvant Temodal on 5/23 schedule @ 200mg/m2
21 Aug 2006 2 week delay in treatment due to low platelet count
4 Sep 2006 3rd cycle of Temodal on 5/23 schedule @ 150mg/m2
2 Oct 2006 4th cycle of Temodal on 5/23 schedule @ 150mg/m2


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 Post subject: Hi Chris
PostPosted: Sun Nov 19, 2006 5:15 pm 
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Location: Melbourne Australia
Hi Chris Sorry its been so long in getting back on line and seeing yur message. My sister is aware of the Cancer Support group in Wgtn but her way of dealing with things is to go on as normal as possible and I think she feels it would bring her down to be amoungst other ppl with these cancers. Certainly at this point she is not chosing to go to these groups.

I've brought the Ian Gawler book 'You can beat cancer' and his recipe book which I will give to my sister in just over a week when my son and I travel to NZ for a few weeks visit. I've also purchased her a great juicer which she is keen to use as part of maintaining a good diet.

Have you read about the P53 gene that basically looks out for faulty cells and when functioning correctly suspends these cells until they correct their fault or it can sometimes create cell suicide. A high % of tumour sufferers have faulty P53 or 'useless' ones and there is also a link to viruses inhibiting the P53 from doing its job. I'd be happy to pass a copy to you of a good article I have via the mail if you want to give me a postal address.

The article was in a Sunday Newspaper magazine here in Melbourne a while ago and was passed to me from a friend. There is a lot of work in Labs around the world into this P53, it also controls our ageing process.

Anyway you may find enough on the internet about it, this article was good because it was explained in laymens terms. Its very interesting I will be attempting to find out when in NZ if they are testing for a P53 fault in my sisters tumour as they have said its a genetic fault.

I wish you and Lynda and your family the best. Keep positive.

Regards
Belinda


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PostPosted: Sun Nov 19, 2006 8:35 pm 
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Joined: Sun Apr 16, 2006 3:57 pm
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Location: Wellington, NZ
Hi Belinda

Completely understand your sister's attitude re the BT support group. There are pros and cons with these types of groups. We found it really useful early on when we were still in shock from the diagnosis and knew absolutely nothing about brain tumours. Talking to a few people in the same or similar circumstances saved us a lot of time on research, as well as providing comfort that there are others in he same boat. Nowadays we only go sporadically to the meetings, depending on how Lynda is feeling, and also just to catch up with some of the nice people we have met in the group.

About p53, we have read up a bit about this gene, because Lynda's type of brain tumour commonly has this gene mutated. Don't get me started on tumour testing however, as this is a bit of a sore point. NZ pathology labs do not routinely test for p53 mutation in brain tumour pathology. In fact the only genetic testing they do is the 1p/19q deletion for oligodenrogliomas. They don't do any genetic testing for GBMs at all!

One of the reasons for this is because they don't guide treatment based on genetic testing, therefore it is deemed unnecessary. The other reason is that they don't have the money, equipment or time to do such testing.

Lynda is taking supplements which are supposed to help upregulate p53 gene function, such as genistein (a soy isoflavone).

Hope your sister is doing well.

Chris
Wellington, NZ
h/o Lynda, 41, dx GBM IV (left posterior frontal lobe) in Mar 2006
proud p/o Cassandra (13), Nathan (11)
9 Mar 2006 resection
14 Mar 2006 pathology confirmed giant cell glioblastoma
18 Apr - 30 May 2006 30 fractions radiation plus daily Temodal @ 75mg/m2
26 Jun 2006 1st cycle adjuvant Temodal on 5/23 schedule @ 150mg/m2
20 Jul 2006 first MRI after radiotherapy, result inconclusive
24 Jul 2006 2nd cycle adjuvant Temodal on 5/23 schedule @ 200mg/m2
21 Aug 2006 2 week delay in treatment due to low platelet count
4 Sep 2006 3rd cycle of Temodal on 5/23 schedule @ 150mg/m2
2 Oct 2006 4th cycle of Temodal on 5/23 schedule @ 150mg/m2
30 Oct 2006 5th cycle of Temodal on 5/23 schedule @ 150mg/m2


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 Post subject: Thanks Chris
PostPosted: Sun Nov 19, 2006 9:30 pm 
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Joined: Sun Oct 01, 2006 11:02 am
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Location: Melbourne Australia
Thanks for your response. Tell me about the testing my sister was told she had a Anaplastic Astrocytoma it was at least a month later if not 6 weeks they told us it was Anaplastic Oligodendroglioma with prognoses 3 years instead of 5.

The 'testing' that they are doing hasn't actually come back with any findings yet, they say it takes a long time! Sure does.

thakns again for your information I am not hopeful of getting much from NZ when I'm there as far as what they are actually doing.

Interestingly my sister has been approach by the Cancer Centre in Wgtn to see if she would agree to open her file for students to study and then it also become part of their exams based on her situation. they say its highly unusual for someone of her age to have the type of tumour she
does.

I wil still look into P53 testing whilst I'm there and see what I can find out. If her case is so special maybe they will test more so as it can be used for study purposes.

Again all the best and thank you
Belinda


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