We Talk Brain Tumours

Hello everyone

I've never posted on here before but I have read lots of posts and the way you all cope with this and bring comfort to each other is really great.

My dad is 65 and in October last year (2011) whilst on holiday my dad fell ill and following CT scans and MRI's Dad was diagnosed with a grade 4 GBM. Dad had surgery followed by a week of chemo tablets (temozolomide) and 6 week course of radiotherapy. Dad then started on a 6 cycle course of temo last month (5 days in every month) but due to worsening of symptoms (Dad is very confused, cannot walk very well, aggressive sometimes, loss of short term memory and is really struggling this past two weeks with his waterworks, things have just deteriorated so quickly) Dad had a mri this week and today we have been to see the oncologist.  Dads original tumour is in the left frontal lobe, today the oncologist said that there is now also a small mass in the right frontal lobe (something we so didnt want to hear). The oncologist wants to give the temo another cycle before he decides whether it is working or not and if when they scan again at the end of the month, the new tumour has grown then they will talk about other chemo options with us as the temo will be deemed not effective.  We are all so shocked and upset, it is like being given the original diagnosis all over again, I just wasnt expecting them to say there was something else.  I dont know what the future holds for us, all I know is that we have to stay strong for dad, mum who has just turned 60 was about to retire so that they could start to enjoy retirement together and this happens, why do these things happen to such wonderful people?

I just hope that with another cycle of the chemo that things start to improve, I so want Dad to have some time left with us so that we can make however long he has left memorable but I worry that if another tumour has appeared and the chemo doesnt work, what will happen then?

Does anyone know or have experience of what the other chemo treatments may be?

Sending you all love and hope for the future

Susan x

Hi Susan,

Sorry to hear of your family's heartache - I know how that initial blow must have felt, then to have it happen again, what a nightmare. I hope you find the support you need on here - there are some lovely people. I don't post very often, but do read regularly, and these people have given me hope that, should the worst happen to my dad ( touch wood), we can and we will get through it and come out the other side, somewhat sadder but still intact.

If anything, this diagnosis makes us appreciate our loved ones and be thankful for every day, week and month we spend with them. Here's hoping your dad's treatment proves successful. And, even if the temo doesn't, bear in mind that my dad's consultant once told him that it would not necessarily be the end of the world, that there are other options, and that they would do their damnedest to keep fending the cancer off for as long as possible. He is still with us 17 months after diagnosis, thank god.

To everyone else, I'm sending my love and strength - the latest posts have been absolutely heart-wrenching and I'm thinking of you.

Zanadu, I have sent you a fb message, I have got everything crossed for Steve - he will prove the doctors wrong yet again, I'm sure. Hope you are both keeping your spirits up.

Take care everyone,

Debbie xxxx

Susan,

What Debbie has said is so true. There are other treatments out there. If the temo doesn't work, there is another chemo called PCV- its three different types of chemo together. It is a severe chemo but it is an option. Its the one my husband has to consider now.  What has happened to my husband is that the TMZ(Temo) worked when all the tumour had been removed to keep new cells from growing. What it didn't do for him was actually attack cells that came back once the TMZ had been stopped. I think the cells in your dads cause must have already moved over to the other part of his brain.Go by what the oncologist says. They will keep a close eye on him. Hope it all works out there.

The other things you mentioned such as dealing with his mood changes,his lack of mobility, are sadly so difficult for the loved ones to see change in their loved ones. Your mum has you, and also make sure you have people that YOU can get support from. Hubs and I attend a support group called Hammerout, They have got groups in the southwest of england and the midlands and they are very helpful in the fact they offer groups to meet at, councelling and also practical advice. I don't know what your macmillian nurse is like, but ours is amazing. I would ask when you go for your appointments, if you want a support group, where your nearest one is. Thats how we have got through it but I appreciate not everyone wants it. Best wishes there and take care. x

As for my other half? Surgery has gone better this time.Yet to find out how much of the tumour was removed. He's had the scan so hopefully will hear soon. He's still got his speech muddling BUT its not any worse than what it was thank goodness. He's also got more strength in his right arm and leg, so thats great, He is feeling a bit of numbness in his left hand and fingers, but thats all and his eyes are adjusting again like last time. I slept better the last two nights! We hope he will be home after the weekend break.

Thinking of all of you this weekend. xxxx

Hi,

I haven't posted on here in a long time, WTBT and Glioblastoma Why Why Why helped me through my mum's illness and I will be forever grateful for all the support and care I received. My family still learning to live our lives without mum, and it's hard - but I've been lucky to have the support of a creative writing/bereavement group, so again I've not been too alone. 

I do read every now and then as I just want to know how people are doing - cyber hugs to all old and new, there are always so many new people...which makes me sad, but it's a good place to find an ear and a shoulder. I genuinely would have been lost without Mac. 

The reason I am writing is I came across this http://www.relaygb.org/Pages/About%20BTUK a while back, it's basically a relay marathon with money raised being donated to Brain Tumour UK. I'm no runner but am hoping to help with the section happening around Bristol/Bath. I know people here are far and wide so I thought it was worth posting a link just in case any one can offer any runners/support.I know I am always slightly outraged by the lack of funding and attention BTs get so I am keen to try to help do something that might one day lead to a cure, and less heart ache.

Anyway, I hope you don't mind me butting in with this post...

H xox (I dream of Fiji)

Hi everyone, advice please you lovely people, Alan has been on steriods since diagnosis in 2010, spoke with mac nurse yesterday as amongst lots of other deteriorating things he seems to be peeing for england, asked how his blood sugar levels are and I said well not been taken since he was in hospital for second debulking in July 2011 not been checked by anyone, well DN has just taken test and tells me it is high 18 but not to worry she will get a message to GP who is not in tomorrow, can t speak to mac nurse as she is off until monday just wondered should I be concerned the DN said not but I really don t trust many now on NHS - your help will be greatly appreciated.

Every day there is a slight deterioration in my man such a living hell......

Hope all new and old are ok sending huge hugs to one and all  Julie xxx

Ah Julie.  Sorry to see you're going through such trauma.

I'm quite surprised that he's not had his sugar tested on a regular basis, but you have regular DN visits, so they should be able to spot anything occurring.

A reading of 18 isn't neccessarily bad.  Mean normal in adults is around 4 or so.  But don't let the high reading cause you any distress. Ali went into hospital when hers went above 30 at which stage she was stabilised and we took her home on metformin and insulin.

Although I had a talk with the diabetes nurse who told me to adjust Ali's diet, I basically ignored that advice and gave Ali whatever she wanted.  With input from our (very supportive) DN, we set our BS alarm levels between about 4 and 25.  The levels did wander around quite a bit, but she never developed any adverse symptoms until right at the end when it crashed to a level of 2 the morning before she passed away.

In short, don't worry overly about it.  Steriod induced diabetes is to be expected, so I suspect that he'll be assessed by the GP and placed on appropriate medication.

Yes, the daily deterioration is a hard thing to go through, but love grows in response.

Peace and comfort be with you both.

Ah, dear Elaine.  So sorry to hear of your news.  It's comforting, however, to hear that he passed with dignity and without suffering.  You did your absolute best for him and it showed.

Peace be with you in the coming days.

Elaine,

I am so sorry to read of Dave's passing. I cannot think of any words to take away your sadness but I am hopeful that you can find some comfort from his goodbye being peaceful and dignified.

Thinking of you and your family at this incredibly sad time.

With love,

Naomi xx

Julie - you are so right, it absolutely is a living hell. Our Mac nurse described it as the cruellest of terminal illnesses. You lose a part of them each day and you know it will never be recovered. We had such wonderful care for dad that my heart breaks when I read of your struggles with the medical profession. When you are feeling stronger, perhaps a word with your local MP may be in order. Something has to change where you live!

I don't post much nowadays but I always have a weekly catch-up. To the newcomers on our train - you will find no greater support than from those on here and to the oldies - hope everyone is coping as best as they can.

I still miss my dad, each and every day. The pain still takes my breath away when I think "oh I'll just ring dad and ask/tell him about that' and I remember that I can't. I haven't been to the church to visit him for months. I just can't and it's the weirdest thing because I was so desperately looking forward to having somewhere to go to visit him. Grief is so confusing and I hate not being in control of my emotions!

I'm doing an 8 mile midnight walk for the Hospice in June. It doesn't start or end at the Hospice which I'm pleased about as i'm still absolutely phobic about going back there.

Time for me to get my head out of the biscuit tin and get fit!

Love to all,

Naomi xx