We Talk Brain Tumours

Hi,

My dad is just over halfway through his first bout of chemo and radiotherapy for GBM4 and has coped well so far. His oncologist got him down to taking one steroid every other day to keep any inflammation at bay (so effectively half a steroid a day), then last week told him to stop taking them.

We have now noticed that his speech seems a tiny bit slower and he mentions having a 'muzzy' head, and during last night he had a headache.

The oncology nurse seemed quite adamant about stopping the steroids - does anyone know why this might be? To us, the people who are with him all the time and know from his demeanour how he is faring, it seems obvious that he needs to be on the half-steroid as it seemingly keeps the inflammation (and therefore the headaches) at bay.

Also, I was wondering if it is normal, during the treatment, to have a slight worsening of symptoms because of the radiotherapy causing inflammation? He is due to have his first scan after the radiotherapy finishes (because he is on a trial for Avastin, so will have scans every month or so) so we are just hoping that these slightly worrying signs don't mean the tumour has regrown after surgery already.

If anyone has any advice from their own experiences, I would really appreciate hearing from you.

Thanks,

Debbie

Hi Debbie,

The affects of R/T can last for 6 months plus after completion of the course.  It actually expands the tumour before it settles down and hopefully shrinks, therefore those ill effects are common in patients. That happened to Doreen, headaches' loss of balance etc. You don't say how many mg's of steroids dad is still on, there are various strengths of a tablet.  They like to get one off steroids altogether if possible, as they are notorious for muscle wastage, that happened to Doreen. She also developed osteoporosis, although whether this was totally down to the steroids we'll never know. It is a very gradually process to totally eliminate the steroids, as they have to wait until the body recommences production of it's own.  They can do a marvellous job, but unfortunately they do have their downside.   Between a 'rock and a hard place' I'm afraid.

I hope this helps somewhat and the very best of luck.   Martyn.

hi ali, i,m like you just bumbling around here trying get the gest of how things go. Seems all i think about at the moment is brain tumours and treatments. My 33 year old son has just being diagnosed. Reading lots and lots but a lot of the evidence seems to contradict each other. Anyone know the most up to date site studies etc.  Feel like a detective searching for hope.

Love Sue xx

Debbie,

Please ask what strength of steroid tablet Dad is on. Generally 16mg is the maximum daily dosage they like to give, but there are several varying tablet strengths. I assume he is on dexamethasone?

Doreen is quite poorly I'm afraid, but still fighting. Thank you for asking.

Hi Sue, I'm sorry you find yourself here, especially when it's your son.  Hopefully there will be folks along who can give you more information about other sites. There is a site called 'btbuddies' which is very helpful, also 'Samantha Dickson' and 'Brain Tumour UK' Hope this is of some help.

Love to all. Martyn

Morning Passengers,

Just wanted to pop by & announce, its my 2nd Craniversary today.  This time 2 years ago I was wearing my forehead on my chin and not a lot else (other than sexy hospital gown & matching surgical stockings) and the top of my skull was lying lonely in a metal tray!

Thats all apart from "yay me" for still being here

Happy Cranioanniversary Debbie ! and hope your next scan is a good one.

Sueik sorry to hear about your son, you can drive yourself insane looking at all the research but Im sure we all do it ,there are a lot of contradictions and statistics, but statistics are just figures ,how I look at it is you can be one in a million and be that one or one in two and not be the one!

A lot of carers seem to get a lot of support from others experiencing the same journey. There is a lot of information about a multitude of different treatments ,how is your son dealing with it? 

love to all Dianne J x

Well done Debs,

Here's to many, many more. Have a 'good' day.  XXXXXX

Hi Sue

Sorry to hear of your son's diagnosis.  My husband was diagnosed with a grade 3 anaplastic oligodendroglioma nearly seven years ago.  I'm a nurse, so wanted to find out as much as possible.

A really good source of info was the American Brain Tumour Association website, they have very detailed leaflets on the different types of tumour and the treatments.

Feilixthecat

Well done Debs.  Lots more anniversaries to come!