Brain Tumour Survivor

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 Post subject: brain stem tumor italy
PostPosted: Mon Jan 23, 2012 6:48 pm 
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Joined: Mon Jan 23, 2012 6:56 am
Posts: 7
Location: Modena, Italy
hi, i am new since last night i an dutch, but live in modena (ferrari city) in italy. 2 weeks after the birth of my 3rd (a son) i was diagnosed with brain stem tumor in the pons area. this caused a paralisation -.nerveswise- on my complete left side in only 5 days!! we satarted cortisone for 3 weeks in hospital, and my husband gives me 2 injections a day now, i have had 260 now and the infiammation is still there and gave huge face and belly. and doesnt seem to help. i have done 28 radiotherapy and am doing 3rd chemo now, temadol 300 mg x 5 days just like most of you. but am not confident and am quite depressive so looking for survivors.. if only i could move myself, am in wheelchair , only one eye functioning, am deaf at my right (always have been) and now almosr also on left..2'%, dont taste much, cannot go to toilet to pee its very frustrating does anyone recognize this? and can they give me a liitle hope? i am losing it a bit its been 6 months and sooo difficult! pull me up!
they dont know gradation since they cannot take viopsie on stem. does anyone in the us or elsewhere tried to operate??? id doANYTHING TO BE MORE WITH MY CHILDREN (6 MONTHS, 2 Y, 4 Y)
Claire


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 Post subject: salvestrol - resveratol
PostPosted: Wed Jan 25, 2012 7:33 am 
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Joined: Mon Jan 23, 2012 6:56 am
Posts: 7
Location: Modena, Italy
i am taking this has anyone tried this?
:?:


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 Post subject:
PostPosted: Wed Jan 25, 2012 5:06 pm 
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Joined: Mon Mar 10, 2008 4:03 pm
Posts: 18130
Location: Australia
I believe that you need a second opinion. Hopefully some the side effects of your treatment will go away overtime.

Most brain stem tumours are benign, but the only sure way to know is a biopsy. Benign tumours can grow slowly and in an area like the brain stem side effects can be very servere.

Seeking a second opinion may open new options. The best opinions are from those who specialise in brain tumours.

Stay in touch and please let us know how things go.


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 Post subject: reply italy
PostPosted: Thu Jan 26, 2012 10:48 pm 
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Joined: Mon Jan 23, 2012 6:56 am
Posts: 7
Location: Modena, Italy
thanks i see you re very active on the forum are you a doctor or patient? still have to find out how the forum works!
we are in bologna with dr. Brandes Bologna very well known neuro oncologist in europe, we also webt to Gerosa and Pinna, lets say top 3 in italy and def. top 20 in europe. its forbidden by law to do biopsie here apparently, there are too many nerves at risk and death... i offered myself as a living science patient to try on but they refused. whats the risk i told them death or paralisation is inacceptable but rest i can live with eyes, speech, hearing, wheelchair.. do they operate on pons is australia? i start new chemo 3rd next week
thx for your answer really helps!
i have never lived anything like this, have been veeery fortunate!
bye, claire


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 Post subject:
PostPosted: Fri Jan 27, 2012 6:41 am 
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Joined: Mon Mar 10, 2008 4:03 pm
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Location: Australia
I am a patient so it is really medical help you need.

Try contacting the IBTA, www.theibta.org for information in Europe.

Australia is too far in my opinion and with its larger population base there may be more options in Europe.

Don't give up hope! However try not to pin your hopes on one treatment, there may be other options.


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 Post subject: INTERESTING
PostPosted: Fri Jan 27, 2012 7:05 am 
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Joined: Mon Jan 23, 2012 6:56 am
Posts: 7
Location: Modena, Italy
DID KNOW THISS AM CHECKING ALSO IN HOLLAND THERE THEY DO KIDS BUT NOT ADULTS I AM 37. BUT AM TRYING SOMEWHERE HERE. THEY SAY ITS TYPICAL CHILD THING,, BETWEEN 10 AND 40..
SORRY BOUT THE CAPS LOCK
WE RE GOING TO BED HERE THERE ITS MORNING? ITS 10 HERE.


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