We Talk Brain Tumours

Hi Martin..havent spoken to you before but was wondering if I could ask you about the Avastin? My daughter aged 15 has a grade 3 astroctyoma on right parietal lobe. She had usual surgery, daily radio with temozolomide and then 2 cycles of temozolomide which was stopped due to possible progression of tumour showing on MRI. PCV started but our oncologist has applied for funding for Avastin as a possible treatment. Can you tell me about any side effects as he has warned us that these can be severe?

At the moment, Sam is doing OK and I would hate to give her a worse quality of life from a different drug - but I suppose we have to balance that with a better long term outcome...

Wishing you all the best

Mummaggie

Hi Mummaggie, 

Becky has been on Avastin for six months now. She has had no obvious side effects. Avastin works on blood vessels, retarding the growth and development of newly forming vessels which supply tumour growth.  The side effects of avastin are cheifly related to its action on the blood vessels. The most common side effect can be an increase in blood pressure. Very serious side effects can be heamorrhage in the brain, but these are rare.

Becky has always had very low blood pressure. While she has been on avastin her BP has risen, but is now at normal levels for someone her age.

My guess is that the more serious side effects are more likely to occur in more elderly people whose baseline health status is less robust.

Today we were at the hospital for more Avastin. The nurses have booked us to see the oncologist because he is concerned that her last blood test shows depressed liver function. He thinks this is due to her new CCNU (the C in PCV). If the bloods remain as now he may stop the CCNU. We hope not as we feel this has put the brakes on the deterioration Becky was showing before she added this to her regime.

Don't be frightened about Avastin. I am sure Becky would not have made it this far without it.

If you can't get funding for the Avastin it is being used in trials in the UK and you should ask your oncologist about these.

Good luck to you with this. If I can add anything else please ask me again.

Martin.

Thanks so much for your reply, Martin. Oncologist scared us a bit as he had a previous patient on childrens ward who had it and suffered badly from side effects including constant diarrhoea. Suggested it may seriously affect quality of life. Understandably we were worried! But now will give it a go if the PCV not working and Avastin available. Thanks.

Sorry to shoot off at a tangent but our dear friends lost their precious granddaughter to cancer earlier this year and their son Warren is doing Hellrunner South run in November. Please read their story at http://www.justgiving.com/Warren-Drew    This cruel disease affects so many,

Hi Fee

So sorry to hear about your mums quick decline, as you will see from my profile we suffered a similar rate of decline with my father in law and the speed was really quite shocking.

The emotions of dealing with your dad and other relations can be very hard but in many ways it also helps, its cathartic.  You will do what comes naturally to most of us at this dreadful time. Be with your dad and with your mum and let yourself say and feel what you need to right now. 

Keep as strong as possible and make mum proud of the daughter she has raised, there is lots of time for tears later on.

thinking of you.

What has happened to this forum.  Where is everyone gone.  I found you all on page 4.

nicky xxx

The original thread disappeared with the old site I think. Many 'old posters' put off by the new site and its lack of security. Its not the same.

Hi Nicky,

How you doing my friend?  How's Amelia?  both silly questions I suppose.          I hope your brilliant star manages to dodge all those rockets and the like tonight!  Lots of love and best wishes to you both, not forgetting Millie as well.  XXXX

Hi Y&Y,

I think the Mac admin people have a hell of a lot to answer for.  I sincerely hope there aren't newly diagnosed patients/carers searching for help, support and advice, but unable to locate it on this most customer UNfriendly site.  I suppose we'll never know.

Love and best wishes to one and all.

Martyn XXXX

Hi Martyn

I think our star is safely hiding behid the clouds tonight, been a very wet bonfire night here in Birmingham.  I sent you are message on FB, which I think explained how I am.  Generally I am doing ok.  I do miss Harry very much, I miss the banter, his silly laugh, the hugs and kisses and the idle chit chat.  Evening can be a very lonely time.  Friends are great at trying to keep me busy but I can't be kept busy 7 nights a week, plus babysitting would get very expensive.

How are you and Doreen??

I do think Macmillan have really F**ked up this thread, and what annoys me is that they do not answer us or hold up their hands to apologise.

Anyway off to bed. xxxx

Hi Nicky - you're right about Macmillan and this thread, they should be ashamed - I think it highlights the problems across the whole of the thread.  I think Martyn is busy getting ready for a day out to you know where, hopefully his luck will be in today.  I think your shining star would be looking down and smiling with pride, you are a very strong lady, take care xxxxxxxxxxxxx