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4,460 Views 9 Replies Last post: May 4, 2011 9:13 PM by tsags RSS
Sam1 9 posts since
Jan 14, 2011
Currently Being Moderated

Jan 31, 2011 2:12 PM

Anaplastic Oliogrodendroglioma Grade 3

Hi, new here, just been diagnosed, needing someone to talk to.  Has anyone got any experience of this rare brain tumour? thank you.

harryeleri 1,220 posts since
Apr 28, 2010
Currently Being Moderated
1. Jan 15, 2011 9:17 AM in response to: Sam1
Re: Anaplastic Oliogrodendroglioma Grade 3

Sorry but I dont have any knowledge of this condition but I would like to wish you luck with your treatment.

Rose xxx

dad1929 552 posts since
Jul 23, 2010
Currently Being Moderated
2. Jan 15, 2011 2:37 PM in response to: harryeleri
Re: Anaplastic Oliogrodendroglioma Grade 3

hi sam

like rose i have no knowledge of your diagnosis but if you dont mind saying what is the prognosis because i am sure it would help to no where you are at and then you at least would be able to know what you are up against,so i hope to hear from you again and i will be keeping you in my thoughts so till then take care and stay strong.

 

 

     jeff.

1 posts since
Jan 29, 2011
Currently Being Moderated
3. Jan 29, 2011 2:57 PM in response to: Sam1
Re: Anaplastic Oliogrodendroglioma Grade 3

Hi Sam

 

Sorry to hear about your diagnosis.  My husband was diagnosed nearly seven years ago with an anaplastic oligodendroglioma, so we know quite a lot about it.

 

A really good source of information is the American Brain Tumour Association ( http://www.abta.org/ ), they have some excellent online leaflets about all types of tumours.

 

Do you know if you have the genetic deletion of 1p and 19q chromosomes in your tumour?  The majority of oligodendroglioma tumours do, and it means they are more sensitive to treatment with a much better prognosis.

Ask your consultant if this has been done.  Do you know what treatment they are planning?

 

Happy to answer any questions

 

SarahSwan

tsags 8 posts since
Dec 15, 2010
Currently Being Moderated
7. Jan 29, 2011 8:03 PM in response to: Sam1
Re: Anaplastic Oliogrodendroglioma Grade 3

Hello Sam1 ,

 

I am so sorry to read of  your diagnosis, we may have already contacted each other through someone else's question?

 

My husband Stuart was first diagnosed with an anaplastic oligodendroglioma grade 2/3 back in 2005 the tumour at the time could not be removed as it was classed as too deep, so just a biopsy was performed.  He had a course of radiotherapy over 5 weeks 5 days a week (please do not be afraid of this he said it is not that bad, we bought a big pot of E45 cream as this may help if the skin gets sore).   The radiotherapy shrunk the tumour considerably from being 5cms diameter to barely noticeable on and MRI.  Until November 2010 he was very well, but he started to have headaches which were mild at first but gradually got worse.  At his yearly check up they performed an MRI and the tumour had changed, he had surgery on 10th Jan  this year (they could operate this time), a medicine called gliolan was used which highlights the bad cells so that the surgeon can see exactly what needs to be removed and then hopefully no good cells are taken. (I don't believe that this is used in many hospitals)  A majority of the tumour has been removed it was graded the same as before and had not got any more agressive. My husband was told yesterday that he needs pcv chemo,  as the hopital put it to mop up anything that was left, ,which will start on Tuesday. He is still very positive of this as he has been throughout so please be the same,  no doubt you probably have read so many different websites about this type of tumour as I have and not all of them are very nice to read, but I did come across one (just wish I could remember which one) were the patient was still here 17 years after first being diagnosed, so be strong, think positive but most of all stay well.

 

Take care of yourself.

 

tsags

tsags 8 posts since
Dec 15, 2010
Currently Being Moderated
9. May 4, 2011 9:13 PM in response to: Sam1
Re: Anaplastic Oliogrodendroglioma Grade 3

Hello Sam1,

 

I have'nt been on here for a while, so sorry I have not replied sooner.  How is your husband?  How did he finding the radiotherapy?  My husband Stuart has had 2 cycles of pcv chemo now, he could not have his third last week as his blood count was low but we are going back next week to see if levels are back to normal, he has an MRI in June so should see if it is working.  How are you coping? It is very hard I know.  It would be nice to hear from you even if it is to have a moan or get any frustrations out.

Take care

Tracy x

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