We Talk Brain Tumours

Hi Edith

I like Martyn I know nothing about acoustic neuroma, I did have a quick look on the internet and found this site, it is run by suffers of this condition and wondered if it might be helpful to you if you were not aware of it.   http://www.bana-uk.com/

Martyn

I will see what I can arrange, anything to make you happy. xxxx

I am now coming to terms with Tony passing as one does, and everyday seems to get better.  I know that if he could talk to me he would say please don't grieve too long and to be pleased that he is no longer suffering and no longer causing pain and worry to those who looked after him with so much love and selfless devotion.

TG,

Several of my friends have reached that  final stage which is still an unknown to me and I do take hope from such as yourself that it does eventually get easier, thank you.

Love to you and yours,

Martyn XXXX

Hi,

I've had something unexpected happen today and I wondered if this has happened to anyone else?

My Dad has Grade IV GBM and had operation, radio and temozolomide. The tumour has regrown but in a slightly different place which has ruled out further operations. A PCV course of chemotherapy was started and the second cycle is due this week. But because my dad's short-term memory has been affected (i.e. he can't remember what day it is or if he has taken his tablets) by the tumour regrowth (which happened after the first PCV course), the Doctor says it's unsafe to continue with the chemotherapy. I feel like they have just given up. 

Your replies most welcome.

Joso

Hi Joso,

My daughter has grade 3 astrocytoma. Also had surgery, radio and TMZ, but only completed 2 cycles of the TMZ as MRI  showed progression. She is now on PCV and has completed 1st cycle. I see from your profile that you are your Dads carer. Why, then, don't they just let you give him the drugs and take him to the appointments for the Vincristine? After all, I do this for my daughter as she is 15yrs old!  I wonder if they have stopped the PCV because his tumour has regrown despite taking the 1st cycle, showing that it has not been effective? I have heard that it is possible to try TMZ again if there has been a gap between the first treatment and the regrowth. I think they need to explain!

Mummaggie

Hi Joso. Sorry to hear about your Dad. I also think it seems a bit strange. I can't see why poor short term memory is a reason to stop and you should ask for clearer explanation. If someone can give him the tablets then it shouldn't matter. From what I understand temozolomide is also a good option for a recurrence so maybe you could ask about that. Another drug called avastin can also be good for recurrence but I think not funded by most trusts in the UK - it is very expensive. No harm in asking them if it is a possible option though. My Dad's GBM has just recurred and although they thought they could operate, when they tried they realised they couldn't remove the tumour. He is still recovering in hospital and I don't know yet what chemo he will be offered.

Let us know what happens. Don't give up. It sounds like your Dad should get more than this.

Joso I just read your thread and see that you've only recently joined. I just wanted to say that I'm sorry you had to find this site but I hope like me you will see what a support it can be. What an awful time you've been having. My dad's first scan was also good and the second MRI after treatment showed recurrence. It's scary how fast this evil tumour grows. Sending you hugs & strength. Do you have a macmillan nurse? The one my Dad has is a great source of info when we have questions and someone like that may be able to help with treatment questions too.

Thanks for coming back to me. Apparently an acoustic neuroma or schwannoma as they are sometimes called is quite rare. I've always said he was a one on his own :-) It has given him tinnitus and also has affected some of his hearing. It has also affected his balance, Not too much, but he is becoming scared of going out. He had an accident on his bike the other week, which was partly his own fault and only in part to do with his dodgy balance. He now wont use his bike, but I am worried that he might stop going out all together if his confidence goes completely. He isn't working at the moment and I am trying very hard, but not quite pulling it off, to keep his spirits up. As well well as trying to keep my own spirits up.

I realise that there may not be anybody out there with experience af my husband's condition, but if there is I would be very gratefull for any help and/or advice they may have. I would also be very gratefull for any advice anyone has about coming to terms with what has been a bit of shock to us and the prospect of a major operation. We don't know yet how they are going to deal with it. They will either cut it out or zap it.

Thanks

Hi Edith,

My dad had a benign acoustic neuroma removed 23 years ago at the age of 51 and he is still going strong. He started going deaf in one ear & thought he had occupational deafness as he worked with a very large noisy printing press all his life. The neuroma was found on a scan & it was the size of a pea. In those days the surgeons didn't give you all the info in order to make an informed decision so dad went with the surgery thinking he had a cancerous tumour. It turned out to be benign but he suffered terribly from head/neck pains cos they obviously cut into the nerve to remove it.

A year later dad another op to remove some of the smaller nerves in an attempt to ease his head pains. This helped but he still suffers from pain & has been on painkillers & valium (to relax him) ever since. He has learned to cut down the medication to the lowest dose & he uses acupuncture to help pain management. At first he regretted having the op, thinking that the pain afterwards was worse than just deafness. It wasn't until he said this to the consultant 3 years later that he was informed that without the op, even though the tumour was benign, it would have grown to such a size that one by one he would have lost his hearing, sense of smell & taste, eyesight & then he would have died due to pressure on the brain. Perhaps if he had been given the full information when first diagnosed he wouldn't have spent 3 years regretting the surgery & he would have learned to enjoy life earlier.

Since that time he has accepted the constant dull pain in the knowledge that seeing his 2 children married, his two grandchildren born, his grandaughter going to University & his grandson working towards an RAF Pilots Scholarship far outweighs anything else in the whole world.

Please remember that over the last 23 years medical science has advanced enormously & I in no way believe that patients being treated for this condition these days will undergo the same painful outcome that my dad did. He still has a full and active life (within the constraints of his creeping old age) and until his recent angioplasty was still walking up the Cumbrian fells!

I hope this helps you & your husband to understand the condition a little more without frightening you about what happened 'in the old days'.  Best wishes for the future and I hope all goes well for you both,

Angie x

Good morning all,

Hi Joso,

Sorry to read about your Dad, but as you can see there are folks on here who are only too willing to try and help.  I have no experience of chemo, but most on here have.  Best wishes to Dad.

Hi Angie,

Thanks for response to Edith and so good to hear your Dad's success story.

Best wishes to all,

MartynXXXX

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