We Talk Brain Tumours

Oh, MrsSG.  If I could hug you, I would.

Dutch - I am so sorry you are having to face this, you must be feeling so incredibly sad.  I'm sure Jane knows you are there and is so happy to have you by her side, I believe what you are doing is the ultimate gift of love between a husband and a wife.  I just hope if this were to ever happen to me, I'd have somebody there who is as kind and caring as you are.

x

MrsSG......The only time I post is if I am able to offer advice to others as husband and I are extremely private people......but I hope that what I am about to tell you may give you some hope for the dreadful situation you find yourself in (I've been there)and because I feel your intense emotional pain.

We have been living with GBM since June 2009.  My husband was given 3 months and had tumour the 'size of an orange' at the time of diagnosis (just headaches, he wasn't incapacitated in any way and was at work the day before!).

His tumour was debaulked by 20 - 25% - his craniotomy was massive (from ear to ear) - they literally removed his forehead - and so large was the tumour, I have since learnt that some of the surgical team who reviewed his scans didn't think surgery was an option.....but one good guy did operate to at least give him a chance.

His Oncology Consultant didn't think he would even tolerate having the mask made for radiotherapy as the op knocked him off his feet and he was like a patient with dementia, wheelchair bound, incontinent, unresponsive when spoken to etc......but I told the Consultant that my husband just needed time to recover from such massive surgery and the shock to his system (he hadn't been a GP since he was a baby, was 44 going on 24, non-smoker, tee-total, fit as a fiddle).  He agreed eventually to let him have 3 weeks of radiotherapy (he didn't think he was well enough to get through the standard 6 weeks) and the chemo (Temozolomide) that runs along side radiotherapy was given for only 9 of the 15 days.

Due to further complications, we were unable to start the 6 months of Temozolomide until October 2009 (due to wound infections, DVT, seizures).

A scan 3 months later showed stable tumour.  The scan at 6 cycles showed 40% shrinkage!  We carried on and did 2 more months of Temozolomide and then a seizure which caused him to fall and hit his head on heavy furniture caused a brain bleed, this required two burr hole operations to drain off fluid (sub-dural heamatoma).  All this head trauma then caused a 3 hour status epilepticus seizure whilst he was an in-patient that caused another fall that broke his back!  He spent a week on ventilator in ICU and 3 months in a back brace.

He was in hospital for 4 1/2 months. 

The first sign of tumour progession occured in September 2010, Temozolomide was re-started (had been off it during the time he spent in hospital). After 2 cycles an MRI was done....tumour still progressing.  It was decided to press on and do 2 more cycles and then scan again.  Again, scan showed progression of 5 cm and Temozolomide was withdrawn (strangely, throughout all this my husband had felt well in himself). Yes, the seizures still came (even though he's on two anti-seizure meds - but I have always maintained his seizures are caused by chemo because when he was off it he didn't have one).

In March 2011, it was decided to try second line chemo PCV and then scan after 2 cycles.

This scan was carried out on 12th May 2011 and shows that the tumour has shrunk by two-thirds!!!  And this after 7 months of steady tumour progression. We continue with the 3rd cycle of PCV next week.

MrsSG - if your husband is well enough in himself and his bloods are good ask if PCV could be tried.....my husband is proof that things can turn around.  Your husband may get a response too.  If he's well enough, it's worth a try.  My husband has also had bouts of incontinence when hospitalised which I believe is brought on by trauma.......whenever he has returned home the problem has resolved after a couple of weeks.  I hope this is the same for your husband.

Of course he's not the man he was and never will be again, but he's still here 2 years later and has proved that strange things can and do happen - he has been off steriods for 12 months (yes, even whilst going through all the above).

I hope this gives you some positivity MrsSG and anyone else whose going through this hideous illness that strikes the loveliest of people from nowhere.

Take care all xxx

Mrs SG, please dont give up hope.  debs-reflections story is incredible.  My husband was diagnosed with GBM IV and told his tumour was incurable - he was told he had 3-6 months in Jan 2010.  Briefly he was diagnosed had surgery, RT + TMZ, 2 cycles of TMZ followed by 6 of PCV.  In November 2010 he was told the tumour had progressed again and the PCV wasnt working.  He asked to continue with it and he is currently doing OK.  Very little speech and rt sided weakness but great sense of humour.  He is currently in hospice to improve mobility due to cellulitus.

Keep strong, jms xxx

My lovely Ian died this morning at 0308.  I was with him every step of the way right up till the end - I will love him forever x

Dear Lost Hope....Know that we are with you and that we understand. Your beautiful husband is at peace and is free from this awful disease.

cathi xx

Mrs SG...With you all the way ((()))

Debs-reflections...Thank you for your inspiring post. The one thing that I have learned about this cursed disease is that there is no knowing which way it will go. A morning can start off terribly and by the evening things have improved..and v. v. It plays with us and dashes us down to the depths and then from nowhere there can be hope. If your post proves anything it is that our beloved husbands wives and partners are not statistics and medical data...we have all to take each day as it comes and hope.

love to all my fellow travellers

Cathi x

Dear Lost Hope, I was saddened to hear about Ian, I am glad you were able to sta with ian throughout.  Thinking of you and sending hugs

Joanna xxx

Is anyone else seeing WTBT lastest post on the home page as 19th May?

Not now as mine has replaced it!  Apologies and our thoughts are with you all.