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 Post subject: Metronomic Temozolomide
PostPosted: Fri Jan 12, 2007 2:15 pm 
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Joined: Fri Jul 22, 2005 1:58 pm
Posts: 50
Location: Woodford, Queensland
Hi everyone, sorry I have been away from this bulletin board for a while. All well my end (fingers crossed for results of latest 3 monthly MRI yesterday!).

I am considering switching to daily TMZ. Does anybody have any advice, especially as to the appropriate dosage. Currently I am on the 14/14 protocol at 100mg per night.

Thanks
Happy New Year to all.

Mike


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 Post subject: daily tmz
PostPosted: Thu Jan 25, 2007 9:15 am 
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Joined: Tue May 02, 2006 3:33 pm
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Location: elliott heads, QLD
Hi Mike,
Hope your MRI came back clear, my daughter Nicole is having her next MRI on the 7th Feb. and she has decided to have stop the temodal treatment. I was devastated by this news but realise I have to accept her wishes. the reasons for this being, she gets so sick and she said I just want to have some quality. My dread is now when she stops, the tumor will grow. I have ask as (she did) numorous times to lower her dosage over a longer period, but they simply refuse and say they are following protocol. I was another hard fight for her to get the last 3 months of temodal. Maybe she will change her mind if they allow her to go on lower dosage like 14/14.
Take care femme


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 Post subject: temodal
PostPosted: Mon Jan 29, 2007 10:18 pm 
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Joined: Tue Oct 10, 2006 5:13 pm
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Location: goondiwindi
Dear Mike and Femme
I have been trying to get reliable info on other ways of takng temodal. There is an abstract by L Buttolo etal Proc ASCO 2006 Abst 1511-Alternative schedules of adjuvant Temozolomide that finds daily temodal is better than any of the other protocols but I haven't read it myself. Good luck and love Catherine


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 Post subject: temodal
PostPosted: Tue Jan 30, 2007 1:08 am 
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Joined: Tue May 02, 2006 3:33 pm
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Location: elliott heads, QLD
Hi Catherine,
Thanks for info but I have taken many documents to the oncologist and showed them, they say that they must follow protocol. I have had many debates with them etc. All I am hoping for now is that my daughter will change her mind about continueing temodal. We have fought so long and hard for her to have some sort of quality with quantity in life.
As her mum i find this so hard to accept, but again we will never give up hope. For where there is hope, MIRACLES may occur.
Take care


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 Post subject:
PostPosted: Sat May 24, 2008 4:35 am 
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Joined: Sat Apr 19, 2008 9:17 am
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Location: Palmerston North, NZ
I have wriiten about temolozide regimes after radiation in General Treatment and am interested in your progress with daily temolozide. Have you had any progress?


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 Post subject:
PostPosted: Sat May 24, 2008 4:35 am 
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Location: Palmerston North, NZ
I have wriiten about temolozide regimes after radiation in General Treatment and am interested in your progress with daily temolozide. Have you had any progress?


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 Post subject:
PostPosted: Sat Mar 21, 2009 6:28 am 
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I have been having daily Temodal (100mg) each day for 7 days followed by a week off. This is going very well at the moment. My hair is thinning a ittle but otherwise the drug is quite tolerable. Next MRI is Monday but no reason to think there will be a problem. I am feeling too well to believe I have cancer.
Wendy


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 Post subject:
PostPosted: Sat Mar 21, 2009 10:20 pm 
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Location: Australia
Hi Wendy,

Best of luck with the scan. I had a few months of 20/28 Temodal (at first I had the stand higher dose 7/28), which may have stablised things or proven that mine was too slow growing to have much effect. Either way I'm happy :).

Like you I tolerated well, only small prob was I had take the antinausea for the last couple of months, rather than the first few days - no biggie.

Ken.


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 Post subject:
PostPosted: Thu May 21, 2009 11:28 am 
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I would really like to know more about the connection between temodal and pseudoprogression. It seems that everytime I have used Temodal I have had dodgy scans which have then improved after Temodal has been stopped. Each time there is a question about whether it is true progression. There is now no doubt that the original tumour ,right frontal obe has regrown as I am now almost paralysed on left side. Avastin does not seem to be keeping up.I am coping by saying each day when I wake up "today I am alive". the effect on my family is devastating. 18 year old son is struggling to stay motivated with uni or life in general. Husband is working so hard to look after me.I hate the pain this is causing everyone and sometimes wish it could all be over.
love
Wendy


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 Post subject:
PostPosted: Thu May 21, 2009 4:31 pm 
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Location: Australia
Hey that's not the Wendy that I know :). Don't worry we all get down at times, but each day is a new day. If you are feeling like this all the time then it could be time to talk to someone about it.

I feel a responsibility to keep my family positive, so I watch favourite movies, sing, exercise and do whatever it takes to put on that brave face. Here is a trick that works. Force yourself to smile and hold it for 30 secs - see!

Pseudoprogression is a tricky subject and can be due to swelling, but best answered by those reviewing your case. One comment I would make is that usually when something is not working I would consider other options and I would ask what they are.

I am sure that your family are stronger than you think. With men suggest get them doing something - it will relieve stress and make them feel that they are contributing.


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 Post subject:
PostPosted: Thu May 21, 2009 8:54 pm 
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Posts: 62
Yes ,it takes a man to know a man. you guys all want to be action heroes, I keep forgetting that. Giving my boys"missions " seems to help us all, as long as they are enjoyable missions. "boys just want to have fun." Number 1 son is trying to teach number 3 how to collect and identify insects(using him to help with a uni assignment). A skill that can never lead you astray. Number 2 son has been given the task of finding the world's greatest guitar riff to put on my ipod for chemo tomorrow. Also can never be a waste of effort although to him no guitarists existed before Van Halen. The lord of the manor is planning meals for next week. and filling in paperwork. He has had to stop work and become full time carer for me and the family. Centre link paper work is about to put him in the foetal position.
I am spending a lot of time crying and worrying and Iknow this is not good. Started taking antidepressants but am not happy about it .
I will not give up !Taking on your suggestions. Thanks for caring.
love
Wendy


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 Post subject: mike gabriel
PostPosted: Fri May 22, 2009 10:35 am 
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Joined: Tue May 02, 2006 3:33 pm
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Location: elliott heads, QLD
Hi everyone, just wondering if anyone knows how Mike is doing???


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 Post subject:
PostPosted: Fri May 22, 2009 10:03 pm 
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Location: Australia
Have you tried emailing him? Hope that he is doing well :).


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 Post subject: mike
PostPosted: Sat May 23, 2009 9:33 am 
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Location: elliott heads, QLD
Hi, yes I have tried on numerous occasions. But what do they say, no news is good news.


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 Post subject:
PostPosted: Sat May 23, 2009 12:30 pm 
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Location: Australia
I may have some regretable news:

While we can't be 100% sure, his interest in horses and timing does fit :(.

"In closing, I would pay tribute to a major member of our team, Dr Michael Gabriel, who was responsible for the phone negotiations which has led to the current 95% acceptance of the trails network being retained for future use by horse riders. Michael Gabriel had an aggressive brain tumour throughout these negotiations, but carried on to achieve a successful outcome. Michael sadly passed away last year as a result of his brain tumour." (Friday, 24 October 2008)

http://www.horsesandpeople.com.au/new2/content/view/135/1/

I tried the phone number but there was no answer. Even if you are not the same Michael sorry to lose you. I am hopeful that the brain cancer stem cell vaccine at Cedars-Sinai, along with the new range of emerging treatments, will finally tip the battle in our favour.


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