We Talk Brain Tumours

Hi Joanna,

Please don't feel like an outsider now, you will never be that.  I agree with you on this.  When my hubby was first diagnosed in June 2009 with a 3 month prognosis, the hospital's 'proven treatments' wasn't enough for me and I went online checking out 'treatment and cures for GBM' from all over the World and then went to clinic armed with what I had printed off to show our Consultant.  I was always excited but it was always the same answer......' you are welcome to go if that's what you want to do, I can't stop you but none of these are proven to work and you will be spending a fortune for nothing - our treatments are proven to be successful in many cases and you wouldn't receive better care if you went private'. 

2 years and 3 months on hubby's tumour has regressed 'significally' for the second time since May 2011 after another 1 1/2 cycles of PCV (didn't complete cycle 4 which was stopped half way through as he caught HAP (hospital accquired pneumonia) when admitted earlier with a status seizure and intubated in ICU), I acknowledge our Consultant was right.  I recently asked our specialist nurse if there was anything on the horizon for GBM patients but sadly the answer was no.  She said there are trials going on which more often than not come to nothing - but we must never give up hope because one day something new WILL be available, lets hope it's soon.

Love and best wishes to all

Debs x

Joanna - you will never be an outsider. I know I will still come on here once I'm on the "other side" for support as you are the only people that understand.

My neighbour works for the press office of Cancer Research. Irrationally, I feel rather cross with him. I told him how much of their budget is dedicated to BT research and he was shocked, he didn't even know!!!!

So angry. Rant over.

Naomi

xxx

Been a tough couple of days for our family.

When I got to the hospice yesterday morning dad was crying. The man in the bay opposite him had just died (or may have even been dying) when I got there. He had only gone in to the hospice the day before for pain management. His family were shocked and devastated. It had obviously been a very rough night but dad was unable to voice any of his fears to me as his speech is so poor. I just sat with him for two hours, holding his hand while we both cried. Crying is how he expresses his anger now as he doesn't have the physical strength or energy to rant or throw things.

He hasn't borne any weight on his legs at all for three days now and he now seems to have lost the use of his arms too. It is so unbearable to watch yet I cannot bear to be away from him. Yesterday the nurses brought us both a gin and tonic, she waved it under dad's nose and he managed a weak smile. You can imagine the effects a G&T had on him when consumed by a straw.

The hospice is full and dying patients are now being sent to our general hospital's critical care unit. Dad is being discharged on Tuesday (unless he gets worse) but to where, we don't know. All they have offered us is a night sitter, no mention of a hospital bed downstairs yet. It's such a worrying time. To make matters worse, I'm pretty sure dad doesn't like it there. He is frightened and lonely.

To be honest, I have noticed that he is choking/coughing even when he isn't eating or drinking now so I have a nasty feeling he will contract pneumonia as he has always been prone to it in the past. I am in limbo, I want this nightmare to be over but I don't want to be without him.

Love to all.

Naomi.xxx

Naomi - lots of love to you - both your parents are very lucky to have all the support you are giving them.

Pam/Joanna/Debs thanks for all that info on the antidepressants. Although I listened to it a couple of weeks ago when Pam reminded me about it again I talked it through with a friend who is a GP yesterday who was very much ' it can't do any harm' and what have you got to loose. Broached it again with Clive this morning and he wasn't even too negative. Now having read your posts again not sure whether to give it a go or not.

I get so excited by all these good ideas and then so deflated when I hear all the negatives. There never is anything good enough!

Has anyone thought of joining the Novocure trial. I read all this up, spoke to the doctors in Paris, printed out all the info and was really excited I had found a cure. Our consultant was pretty dismissive.

Although our consultant is nice I sometimes think we are just a treatment to be got through and he is marginally interested in the results but not really. He doesn't really care about us - not really.

Sooo frustrating,

Wendy XX

Hi all,  Sorry haven't been on for a while but my thoughts are with u all old and new x

We are also still in limbo. G is still with us, defying all the odds.  Our daughter has started back at school but is struggling. Now she knows that he hasn't got long she feels she should be with him all of the time and when she is she always puts on a brave face but then breaks down as soon as we leave. It is heartbreaking, she lay on the bed with her dad yesterday and cuddled into him.  He fell asleep in her arms and she didn't want to leave him. It is all so wrong.

Ange x

Wendy--

if you want your Clive to go onto a trial or you find some other treatment yourself, you don't have to take notice of what the consultant thinks. All the doctors were very dismissive of the treatment we have put our daughter on, but since the NHS could give us nothing we are treating her with some brilliant alternative medicine. She has gone from not being able to go walk to the bathroom on her own to being able to return to england with her 2 small children without me being on hand for every single thing. Even if the treatment does not totally save her life, her actual quality of life has improved enormously! So do your research and go for it.

With lots of love, Sue xx

So many going through tough times myheart goes out to you.  Naomi, ask for a discharge planning meeting, stress that you dont feel mum will cope alone, they hospice staff should arrange one for you, it should be attended by hospice team SW, DN OT and anyone else you think needs to be there.

Wendy, I don't think the Novocure study is running in the UK its a US study with sites in Eastern and Western Europe.  There is no reason why you can't look at participating but it would probably be expensive to do as there will be frequent visits.  Feel free to PM me.  Have you checked Clinicaltrials.gov to see if there are any suitable trials running in UK?

Wishing you all a peaceful day

Joanna x

Hi Debs-reflection

I am really pleased to hear that your husband has had success with PCV.

My husband was diagnosed the same time as your husband with the same prognosis and he was doing quite well on PCV upto the 4th cycle but the 5th cycle had to be stopped as my husband became completely immobile (his tumour was on the movement part of the brain so mobility was a problem from day one) and the treatment had started to affect his liver and bloods would not recover.

Sadly I lost him in August 2010 purely because his poor body couldn't take anymore because my husband never gave into it and fought all the way.

The reason for replying to your post is that I explored all of the other treatments and like you took the print outs to the Oncologist and got the same response.

I know that there is also a teatment called photodynamic therapy (PDT) - obviously if you google it you will find it - it is also on the NICE site www.nice.org.uk.

We looked into a trial for this but there are 'rules' that go with the trials aswell - sadly, we didn't fall into the catogories - I think they were age range, mobility so this meant Steve was out at the first hurdle.

I used to speak to a lady on this site called Buzzie who's husband had the treatment for another type of cancer but they went abroad and paid for it.

Hope this helps a bit - keep positive.

Take care

Ann x

Hi Ann,

Thanks for writing and I am so sorry your lovely husband lost his fight to this devastating illness.  I have nothing but admiration for you because you have always helped and offered advice to others even though you are hurting inside and I personally have learnt so much from your previous posts. You are a very special lady and Steve was a lucky man to have such a wonderful, caring wife.

I will look up PDT and learn about it - not heard of it before - thanks for the info!

Yes, the response to PCV has been nothing short of amazing - Temozolomide worked wonders too in the beginning and there was no tumour progression for 15 months. It was September 2010 it began and continued until March 2011 - four cycles of Temozolomide had no effect this time......reason for trying PCV.

I have to say (as I think others have before) this chemo is much 'harsher' on the body than Temozolomide.  I was shocked when my hubby caught HAP (another kicking for him) but thankfully he's never smoked and has a good set of lungs and the pneumonia which was in his right lung responded to the industrial strength antibiotics and has now gone. We see our Consultant Monday....to decide whether to press on with cycle 5 or give hubby a break as he's really been through the wringer these past 9 weeks - seizures, HAP and uti (from catheter in hospital icu).

I still always ask our Consultant about anything 'new' that appears on the scene....but these days I'm ready for his lack of enthusiam (!).....because there really is no miracle treatment out there at the moment for GBM. He's told me when there is we'll be the first to know (bet he says that to everybody!!!).  His judgement as far as hubby's treatment has gone so far has been pretty much 'spot on'.....including his decision to only give 3 weeks of radiotherapy instead of the standard 6 with chemo added for 1 week instead of all 3 due to hubby being so poorly after his craniotomy which was from ear to ear - the bone flap was his entire forehead - no wonder no one fancied doing the op!  Being new to all this and in total shock, I wanted hubby to have the full 6 weeks radiotherapy/combined chemo but Consultant didn't think he'd make it through to the end (he was so ill after his massive op) and said he's rather get him through a 3 week course instead of failing a 6 week course - he was right because hubby only just made it through the 3 week course and was very poorly on the penultimate day suffering two seizures - the first of many to come.  I am so grateful we have a superb Consultant looking after hubby.

Ann, thanks again - your help and presence is appreciated by me and I am sure I speak for everyone else who has been unfortunate in having to join this forum.

Look after yourself.

Debs xxx

Naomi,

I have thought long and hard about whether or not to write this post as I don't want to appear as a busy-body, but as BT life has taught me - sometimes you just need to get on with things and worry about the potential consequences later.

I have posted on this site previously but unfortunately now I am "on the other side" so sometimes feel that this is not the place for me - not because the people on here are not fabulous and welcoming, just sometimes I feel like I am a reminder of people's future rather than their current life.  So, please don't think I am some stranger who is just playing around.

Anyway, reading your posts is like reading a diary of my father's illness - there are so many similarities it is uncanny, both in terms of physical symptoms and deterioration.  We also had experience of my Dad being in a hospice and then being discharged even though the practicalities of him being at home were untenable.  We learnt a lot really quickly about what other help was available, how to get it and how to really fight for what we needed at the time.

I am not saying that I have any of the answers for you but I may have had some experiences which could be of assistance in the coming days/weeks.  So, please shout if I can help or PM me if you want.

I wish you and your family love and strength.

Kind thoughts to everyone else.

Samantha