We Talk Brain Tumours

Hi, my husband was diagnosed with a brain tumour two weeks before our wedding July 31st 2009. He had been suffering from occasional blurred vision which was on and off not permanent and that's all! The MRI he eventually had after several visits to Gp and opticians revealed a tumour about the size of an egg  in the area that affects his vision.He had his first op beginning of August and recovered extremely well enabling us to go ahead with our wedding on August 14th but having to cancel our honeymoon to kefalonia. First histology was a grade 2 oligodenglioma but he needed further surgery in November. He was brilliant until mid October 2009 when his peripheral vision was severely affected and eventually he became confused with numbers and dates. He was given a Ct scan which revealed a large cyst on the tumour. He again recovered extremely well from the second op in which they managed to take out most  if not all of the tumour. The histology this time came back as a shocking grade 4 glioblastoma multiforme but we have been told that under the old WHO grading would have been more like a grade 3.  He had 6 weeks radio and tmz but unfortunatley was only able to tolerate another month of the tmz as his platlets went dangerously low. 

He had his last scan in September 2010 which revealed no re growth. Although he continues to do well I am very worried about the next scan beginning of March as there will have been 6 months since the last one. We have to wait two weeks for the results too. He has has the occasional double vision attack (not many) a and a few slight dizzy spells.

We did manage to go away to Kefalonia a year later last summer which was lovely. Anyone else with similar experiences? I need to talk to someone. It's so worrying!

Siana my first pathology came back as WHO grade II Oligodendroglioma but a portion had been sent off to a lab in Cambridge who were unhappy with the amount of cells on the turn and I was upgraded within 4 days to an Anaplastic Grade III Oligo.  I had a gross total resection (all removed) from my right frontal lobe. Bit of a shock but 2 years later I am still doing ok, I have shocking memory problems since surgery & RT but it's become the new normal.  I managed the 6 cycles of TMZ but had a months break after the 1st one as my platelets dropped from 375 to 55.  They adjusted the dose and I was fine throughout the next 5.

I have a scan on Monday 7th Feb, so watch this space and send lots of positive vibes if any of you have some spare!

Good luck to your husband (and you) on this journey, you will find plenty of friends, listening ears and help on this forum.

TMZ vs PCV?

My wife Jo tolerated TMZ well whilst given alongside the RT (GBM surgery in Aug 10).  Unfortunately when she subsequently started the higher dose she was unable to tolerate it and due to her low white blood cell count they have stopped the treatment after 2 of the planned 6 sessions.

Is it worth asking about PCV or in the experience of those of you who have been through this would that have the same affect.  The problem is that she is on the Celengitide trial which the Oncologist is very confident of its benefits.  When her blood count drops she has to stop the celengitide as well (followed by reduced dose for 3 weeks) and we feel something is better than nothing so dont want to risk her blood count crashing again.

Anyone had any similar experiences?

Hi Jonesy

If Jo is tolerating the cilengitide well and responding to it then you may have to stick with the protocol - there is no harm in talking to your oncologist about other options however I believe that if you were to go onto PCV you would be excluded from the study. WCC can be affected by all chemos as the chemotherapy affects bone marrow function and this is where the cells are reproduced

jms

Hello

I am new to this and only just tried writing but reading your entry your husbands symptons sound so much like my husband and I want to say I hope the scan results ok.

Opal

Hello All

Its a while since I have been on here.  Things with my dad have been going ok, he did his 6 weeks of radiotherapy followed by TMZ for 6 months but sadly its not controlled the BT, so he started PCV on Monday and has been very poorly.  A couple of months ago he started to experience some sensory problems, the BT affects his left side and he struggles to use his left arm, speech is slurry occasionally (i kept thinking he was a bit drunk!) now he says he wants to put the second letter before the first when he writes. 

Me and my mum are as ever trying to be strong and positive to keep him up but we both realise that things are going to start to get worse now.  All the docs said he had 2 years well almost to the day things have started to deteriorate.

Have some thoughts and questions just wondered if anyone might be able to help.

1.  At what point do you have "the talk" the one you dread, about legal issues, funeral plans, wishes for his care packages etc?  I am keen to just start broaching the subject but mum isn't. don't want to bully anyone but I am really concerned about leaving the issue and then him not getting what he wants/needs - so very difficult.

2. We are being fake with one another, sometimes he tells me he is feeling good and that he is ok (mum tells me otherwise, last week for instance on Thursday I had a really good chat with him and he put my mind at rest but mum told me he spent the whole day crying) is it ok to pretend, suppose everyone has different coping mechanisms.  We are just trying to protect each others feelings.  I've been thinking about writing him a letter to let him know when he is ready to talk that I can handle it.  I know I will always be his baby but I am 31 now. I really want to tell him what an amazing job he did raising me, want him to know when the time comes he can be at peace that I am a well adjusted person who is generally happy in her life.  I think that as a parent he should know that he did everything he could for me, I appreciated it and that he leaves this world knowing its all ok.

3. Confidence his reducing, since he collapsed a month ago and the affects of the PCV he doesn't want to leave the house.  In the whole time this has been going on he has always managed to get out and about and not let it get him down.  This is a massive change in his behaviour and to me signifies that things are getting worse.  When do you know to initiate Macmillan support/care packages.  Do people suddenly get worse over night, how do you know not to leave this too late?

OK think thats it for now.  If anyone feels like commenting that would be awesome.  I know things are getting bad, I am always thinking of my dad, i carry it with me all day long, normally I can shrug it off for sleeping time at night but I keep thinking things over and over hence the early log-on to the website.

Bye for now hope you all have a good day, Love Helen xxx (AKA Long Distance Worrier)

Hi LDW

Helen is my husband Steve's youngest daughters name!

I will give you our jorney so you can compare.

Steve lost the use of his right arm afetr the biopsy due to position of tumour and had weakness in right leg so mobility was always going to be our problem.

When Steve was diagnosed his tumour was 2.5cm and after 6wks radio with TMZ and then one course of full dose TMZ it had grown to 3.5cm.

Steve didn't like TMZ on it's own so we changed to PCV (a very harsh chemo).  Steve was ok upto 4th session but it did not reduce the tumour.  When we started the 5th cycle he was already due to gave a blood tranfusion because his blood count was low and he was aneamic.

Three days into 5th cycle Steve collapsed (6th June 2010) and could no longer hold his own weight and ended up in hospital and PCV was stopped as it was affecting his liver function.

I then had to have that conversation with the Oncologist (11th June 2010) and I was told that treatment had to stop and no more would be offered (Steve couldn't take anymore).

I was told that it maybe quick but it could also take time (They can only judge - they do not know themselves).

Steve was bedbound and immobile and never walked again or got out of bed.

The oncologist/social services said that he could not come home until all of the equipment was in place (hospital bed, hoist etc) and that he woudl fast track a full care package.

It took another 4 weeks to put into place so Steve had to stay partly in hospital and partly in the hospice as he had another two blood transfusion and fought off cdif and two chest infections.

He finally came home on 19th July 2010 and we had 2 Sue Ryder Carers coming in four times a day, a night carer provided by the DN, the DN coming in every day.

Steve then had difficulties breathing on 6th August and ended up in hospital again and passed away on 12th August 2010.  Steve passed away because of being completely immobile which caused a pulminery embolism (blood clots to the lungs).

My advice would be start talking to DN, Oncologist about what care needs they feel your Dad may need because hospital is the last place to end up and all of these things take time to put into place (prescious time we never had whereby Steve could have been at home for longer).

Talk to your Dad now (not about the horrible bits) but the things you feel you need to say to him because he may not understand you when things start to progress.

Don'y worry about crying together - this is only natural - Steve and I cried together throughout the treatment/trying to fight it.

Hind sight - I would gave put things into place much sooner so we could have been together at home for longer.

Hope this helps you a bit

Take care Helen

Ann x

Dear LDW

I feel the same as you, feel in limbo waiting for something to happen. Last time I tried the funeral topic he got so upset I havnt dared mention again and now he is unable to express himself due to speech problems. I too would like someone to tell me what to expect in the future. I have been told my husband will get increasingly drowsy then fall into a coma but I feel that sounds too simple. We too tried TMZ then PCV but now only pallitive care. I had an accident so a hospice at home has already been started.

Does anyone have experience of steroid induced diabetis?

OPAL XX

Sometimes reading these posts really scares me - I try to be positive and find being practical is the way I cope best.  I am well aware how slowly things can move in the NHS and started to put a care package into place when Paul was first diagnosed last January, at this point we didnt need any help but I still asked for a macmillan nurse, social work guidance, information about day hospice as his speech started to become an issue (before he pretty much lost it) I asked for speech therapy.  My theory is that if its in place then the  team knows you and your lifestyle and to be fair they have visited monthly or weekly as we needed it.  Even the district nurses have come on a regualr basis just to get to know us in anticipation of us needing help in the future

Currenly Pauls mobility is poor but I already had a wheelchair in place months ago so that we never had days when we could nt get out if we wanted to.  Macmillan nurse physio and OT vist and help as required and Paul goes to day hospice once a week. 

I am not shy about phoning and asking for whatever I think Paul may need and that includes changing his steroids if I think its going to help him, yes there is a risk of side effects but then we are living with risk every day

Ann B I read your posts last year and hope I learnt well from you so thank you.   

jms

Hi Helen,

You sound a bit like me - and I know I think too much! I feel like all the points you have raised, I too lie awake worrying about, but putting on a positive front. 
We are a few months behind you in terms of my dad's treatment. He has one week left of a six-week radiotherapy course, a month's break from the TMZ chemo, then another five months of chemo.

I too feel like we are in limbo, living with a timebomb that will completely destroy us if it explodes. Some days I feel very positive about dad's future, but then other days I feel hopeless, and fretful about how we will cope with the whole 'talking about the end' or even just talking about our own emotions if the situation takes a nosedive. It's a real high-pressure situation at times, which I don't want it to be. 

I know I'm not being very helpful there (!) but wanted you to know you're not alone in the way you're feeling, and the things you're worrying about. I've thought about writing a little note, perhaps in a card for my dad's next birthday in March, telling him what he means to us, but then I don't want to open the floodgates! I guess the answer is to take each day as it comes, and do whatever makes you (and your dad) feel better.

Anyway, take care everyone.

Debbie xx