We Talk Brain Tumours

Also to add to Mandys good advice I think morphine/oromorph can actually cause headaches! sounds strange for a pain relief I know. x

dshaw,  good advice from the 2 previous ladies, just shows what I know eh?

Regards.

Morning all.. My family had the meeting with the Drs yesterday afternoon and prognosis is not good.

My Mum has a grade IV Glioblastoma and they have said 6-12 months. Dr has told us in his own personal experiences he has not known anyone to last 2 years.

We are waiting for the radiotherapy appointment to come through and they have said because she recovered well from the operation they would consider operating again if needed.

The lump they removed was the size of a tennis ball and Dr thinks he removed about 2/3 of it, but he told us this may have only been growing for the last 6months he said it definitely was not growing a year ago.

If any of you can give me advice on what to expect now I'd be greatful. Thanks

hi worriednow,

my dad had glioblastoma too and had radiotherapy.  the radiotherapy is given daily monday to friday with weekends off, initially dad was fine but towards the end of treatment he got tired.  it is liklely the original symptoms will return temporarily as the radiotherapy iritates the brain and causes swelling, well thats what we were told anyway. 

it's hard to give advice as everyone is different and not sure what kind of info your after.  if you have any questions feel free to ask. 

what hospital is your mum being treated at? some hospitals have very good support groups for your mum and the rest of the family.

hope this helps

jennie xxx 

Thanks I have heard that radiotherapy can make you tired.

She is being treated at Charing Cross in Hammersmith, London. Our local hospital does not have a neurology department.

I'm not sure I know what questions I need answering lol. Reading through this I have found answers that I didn't know the question.

My next step is to talk to people about benefits and see if they are entitled to any help. I've been advised to speak to a Macmillan nurse for that. Then hopefully the letter with the radiotherapy appointment will have arrived and it will tell us how long each session will be and for how long.

Thanks all

All I will say is that the Dr's personal experience isn't very wide. There are many cases of GBM patients surviving after 2 years, although the majority do not.   A prognosis is an educated guesstimate based on past experiences, but thankfully not every sufferer has learnt the lines!  Doreen's prognosis was approximately 2 years and that was January 7th 2003. We haven't got much further to travel, but we have enjoyed each other even more these past 7+ years.

Best wishes, Martyn.

Hi all,  It's been a while since I posted and quite a bit has happened.  After my husband had his brain tumour removed we went for a follow up scan and it showed that the cancer had spread to three areas of his body.  We were both shocked to say the least as other than the brain tumour we believed he was all clear.  The consultants were very worried that the cancer had spread so quickly in such little time.  Our last scan was in December and at that time he was given the all clear.  

He has taken 2 courses of Temozolomide and we went back for our next follow up scan.  It showed that the brain tumour had returned and that he had further spread to another organ.  We are starting a course of Nexavar combined with Temozolomide next week and we have just finished a 5 day course of Radiothrrapy to his whole brain.  

He has been very sick over the last couple of days and completely off his food for the last couple of weeks.  It looks like he's wasting away in front of my eyes and I feel so helpless.  It was our son's 9th birthday yesterday and we tried to keep it as normal for him as possible.  We discussed daddies illness with him last weekend and explained that there would be some changes.  Our 6 year old seems oblivious to it all, but my 9 year old is very sensitive and has such a strong bond with his dad that I worry how this is all impacting him.  

My husband is taking anti-sickness drugs, but just throws them back up minutes later.  I'm feeling scared and don't know what I can do to help him with his sickness and lack of appetite.  The consultant suggested steroids?  Any advice, words of wisdom would be greatly appreciated.  xx

Martyn that is fantastic news and a real boost to hear there are people who do beat the statistics. Mum has said that she will, she wants to see her Great Grandchildren although to do that would mean 20+ years.

Dimmy I'm sorry to hear that the cancer has spread elsewhere. My Mum too suffered with the anti sickness drugs but we thought that was because she was taking them too close to a painkiller. Reading your story makes me now think that could be coincidence.

Hi Dimmy-sorry to hear the trouble your Husband is having. If your consultant has suggested steroids I would give them a try. They usually have quite a dramatic effect in that they reduce the swelling around the tumour site thereby relieving the pressure and also give the person an immense appetite. My Husband could eat for England when he was on his highest dose of steroids and I put on 2 stone as well!!!! Not so good but it seemed rude not to join him in all that lovely food. As for the anti-sickness meds there are different types so maybe ask you doc to try a different kind. Failing that just to give him some respite from the vomiting  he may be able to have the anti-emetic ( anti sickness) medication via injection. It will be less intrusive on his stomach and is sometimes better tolerated short term. It is such a worry to have to watch our loved ones suffer, and especially hard when young children are involved. Good luck. x

Hi WorriedNow

We have all been were you are at now and it is extremely difficult to believe that your loved one has been told 6-12 months.

This time last year 3 Dr's told us that my husband only had 3-6 months untreated and 6-12 months treated - click on my name to see our profile.

Well we have just reached the 12 month mark and on the whole my husband is doing fine albeit still having to endure the treatment and he also has mobility problems.

I feel that we have got this far as my husband has always said it doesn't occur to him to give up and despite the daily upset/worry (which never goes away) you have to believe that your loved one will beat all the odds and that there are people who do, so keep positive.

With regards to benefits it depends on age ie over/under retirement age.

Your mum should be entitled to DLA (Disability Living Allowance) so my advice would be is to complete/send the forms straight away regardless of entitlement (you can download them) because DLA is only paid from the date the form is received and will not be back dated to the date of diagnosis.

If your mum is entitled to the higher rate (her GP or the Oncologist has to complete a form called DS1500) which then should put her on the higher rate.

If you look back on the general forums (not sure if it is in Brain Cancer or General Cancer) there is a forum about benefits which I have posted on in the past.

You have to keep pushing for benefits and don't accept being turned down.

Hope this helps a bit

Take care and will be thinking of you

Ann x