We Talk Brain Tumours

Hi Everyone

Great message Sue - hope Paul is feeling better than the weekend and the dex has helped xx 

Welcome to those people who, sadly,  have had to find themselves here - I am certain you will come to find it as beneficial as I have over the past couple of years.

Not sure this is the appropriate place but since you have been so supportive I thought I'd say that my daughter had her appointment with not one but two consultants today - both very very nice and spent a lot of time explaining things.  I am very grateful.  They seriously consider her tumour to be benign.  However, they need to biopsy to be sure and will do this at the same time they operate, hopefully sometime in May.  They are going to use something called radiofrequency ablation which is a new treatment, relatively - a probe is sent into the middle of the tumour and heated to 100degrees to kill the tumour from within - amazing!   It will be done under a general but should be a day case but only if the procedure is done in the morning, if not in the morning then not at all.  Because the tumour is so rare they have only performed this procedure on this tumour 30 times, which is apparently a lot more than some other places!  If, after biopsy, they find it's not the tumour we all hope it to be then this procedure won't make things worse. 

If they don't use this procedure or if the tumour returns (it may) then it is open surgery so they can remove 1.5" bone then 'something' fixed in and plastered up for 6 weeks.  So fingers crossed it works!  They are a little concerned there may be bone disease which they say is difficult to treat but the biopsy will tell them. 

All in all a good result we think - a lot of pressure seems to have been lifted.  I didn't realise just how much it was affecting me - so afterwards I treated Katie to a bacon buttie and then she went to work and I went shopping in Manchester and relieved my purse of probably too much weight!!!

Got a flight to catch on Sunday to visit someone who has become a very dear friend! 

Take care xxxx

Wow Mandy it sounds incredible what they can do & I'm pleased for you & Katie that it all sounds so positive. Bacon butties yum, yum!! Enjoy your time away. You deserve it.xx

Mo or is it Jo (can't see now I'm doing a reply which is correct ,sorry brain addled & not working very well) Welcome although I'm sad you have the need to join us here. My husband Pete also has a  Grade 4 GBM. He was diagnosed 21 months ago. His tumour is in the right front lobal area. He has only had one seizure since it was diagnosed but he was immediately put onto phenytoin to prevent them happening. The seizure he did have was pretty violent & scary for him & for me & my family to witness. He was admitted to hospital as a result. Our Macmillan specialist nurse did say that often the seizure can be brought on by stress & I firmly beleive this was the reason why Pete had his as he was getting very agitated at the time about an email he had received from his boss which was not very supportive to say the least!  

As Susan 206 has said often the position of the tumour can be a major factor in whether or not the patient will suffer with seizures. I would suggest having a word with your specialist nurse if you haven't already done so as I have found ours to be very helpful in finding out answers and providing support when needed. Very best wishes to you & your son. x

Thinking of you all as always.

Sue xx

Mandy, that's good news love. Give Katie another hug...as I'm sure she's had loads.

Enjoy your break.

Love to you

PEABS XXXXX

Hi Everyone

Just seeking some advice in respect of whether speech therapy can help.

Has anyone tried this type of therapy as my husband is getting frustrated that brain to mouth doesn't always work!

Part and parcel of the condition I know but on reading rehabilitation sites, it says that it can help.

Thanking you in anticipation.

My love and thoughts goes to everyone who is going through extremily difficult times at the moment.

Take care

Ann x

Hi Mandy , After four weeks in hospital then hospice , my step dad (David McClure) passed away last thursday aged 56. He fought it to the end.

 I can`t  thank you enough for your support and kind words .

Thankyou, Scott.

Hi Everyone

Scott, I am obviously saddened by your post but hope you can take comfort knowing your step dad had everything that could be done was done for him. Now I hope you can take care of yourself as this part of the journey is not easy - you need to allow time to simply be and remember you are always welcome back here anytime.

Ann, my husband had a lot of speech therapy and although Peter was severely lacking in communication (aphasic), speech therapy certainly improved things for us.  However, this is based on Peter's rehabilitation after his operation went wrong (so due to brain injury) and not based on tumour progression - even though Peter couldn't communicate, we could tell that if he could his understanding got less as his tumour grew so no amount of speech therapy would have helped that.  A problem, I think, will be that the therapist has to assess the person, find the baseline and also pinpoint  which part of the speech area is lacking (complicated) and with brain tumour patients this will be changing.  Also, therapy takes a lot of time and repetitive work - very tiring and very frustrating - it is certainly not a quick fix.   These are my thoughts but maybe you should speak with a therapist - I would suggest contacting a charity called Speakeasy who specialise in speech therapy for people with communication problems caused by brain injury - if you ring them you could mention us, Mandy & Peter, they know us well, as they may be able to recognise the problems with brain tumour patients from this.  I've loads more I could say about this so ask away if you want - sorry it's not that positive but I can only speak from our experience.

Love to all xx

Hi Mandy

Thankyou very much for the info.  With my husband (he didn't have an op just a biopsy) and in resent months, his brain power is all most the same but trying to communicate what he is thinking is the problem.

He seems to be able to say - can you get me but ......  the vitlal word he struggles with and is then frustrating.

The one thing he feared was not being able to communicate.  Fortunately 9 times out of 10 I can work out what he wants but it is when he is trying to communicate thechnical things to me that he struggles.

He knows what he wants to say but it won't come out and then disappears from memory, so we wait a bit and it sometimes comes back later in the day.

Our Oncologist did say that as the tumour is on the movement part of the brain my husband's problems would always be physical more then speech.

A part of me says that it is the medication that dulls the senses because when we have the first part of PCV chemo he gets what I call 'chemo' eyes.

I feel that he needs to be accessed so I will speak to GP

Many Thanks again

Take care

Ann x

Oops' my brain not working today! Technical, Vital and I think I meant assessed!

Never mind, you know what I mean!

Hi Ann

It does occur to me when you say the oncologist says what will be affected by the tumour that the problems can be elsewhere in the brain rather than at the tumour site.  As the tumour grows the brain tries to accommodate it so the brain gets pushed about and pressure is placed elsewhere, which is one of the many reasons the surgeons/doctors have problems giving us an accurate diagnosis and why everyone is so individual with BT's.  So even though your husband's tumour may be within a movement part of the brain, if the tumour is compressing the speech part  then speech will be affected.  However, I would agree with you with regard medication as so often they do cause problems with concentration, memory and speech - but speech therapy will not be able to help with this - best of luck with any assessment 

Thanks Peabs - will give her that hug - my other daughter, Abbi, is so impressed with the cymbals!

See you xxx

Just a quick hello from me to wish everyone as pleasant and relaxing holiday weekend as possible. Mandy, hope you have a fantastic time. Please give that special friend a big hug from me too!

Not much going on here this weekend. The usual schedule of laundry, cleaning, shopping and cooking but when I read of the sadness and difficulties some of my Mac friends are facing at the moment, I give silent thanks that at least life is still relatively normal for us.

MRI scan on Tuesday, always rather an ordeal although not as bad as waiting for the results.

Love to everyone,

Sue

xxxxx