We Talk Brain Tumours

Hi All

Took Tony for his monthly blood tests today and everything is currently going well. We have our little bag of Temozolomide and begin Tony's second cycle tomorrow. His dose has gone up to 460mg so am keeping my fingers crossed that the side-effects are not too extreme.

We spoke to the Consultant about clomipramine and he communicated very strongly his frustration that this drug seems to pop up on the cancer scene every few years creating false hope to cancer sufferers. He explained that there is absolutely no formal evidence and no anecdotal evidence recorded that proves its effectiveness for treating brain tumours and would not be prepared to prescribe it himself as he feels being associated with the drug would compromise his strong position on the subject.

However, he did acknowledge that, for brain tumour sufferers, it is difficult to accept this view when you are the type of person who wants to give it a go. Once the genie is out of the bottle it's not going to go back in is it? He completely understood the motivations behind wanting to try it once you have heard of its existence. He was very lovely about it. So, whilst he said that he was not prepared to write a prescription for the drug himself (he understandably did not want to be connected with its association with brain cancer) he was prepared to speak to our GP to say he has no issues if Tony requests it and is OK with her prescribing it.

To be perfectly honest, whether it actually has a medical affect or not is only a small part of it. It's been tested (albeit as an anti-depressant) so the potential side effects are well documented which means that Tony can weigh up the risks. So what has he got to lose? As far as I can tell the biggest risk is an increased incident of seizures - which he may potentially get as his condition worsens anyway. Taking it certainly won't shorten his life and, it's an anti-depressant, so may even make him feel a bit better for a while. And I know that he is the type of person who would psychologically benefit from the knowledge that he is at least giving something a go. So even if it doesn't make an ounce of difference to his tumour, there are other psychological and emotional benefits to consider which are less easy for us to dismiss.

Personally, Tony struggles emotionally sometimes and he regularly swings through a whole spectrum of emotions. You never know what Tony you're going to get when you wake up sometimes that's for sure and he is frequently angry. So as far as I am concerned, taking an anti-depressant can only be a good thing on the quality of life for the whole family.

So, we'll be off to our GP next Monday in the hope that she'll write him a prescription.

Fingers crossed.

Love to all and I hope you're all having a good day today.

Pam

x

Ange - So lovely to hear from you, I have been thinking of you all week. Your posts about your daughter's feelings are heartbreaking. Imagine what a terrific young adult she is going to become. So much compassion for others and a real sense of what is important in life. Her dad will be very proud of her.xxx

Joanna - thank you so much (once again) for that information. I had no idea about it. I emailed our hospice nurse with all of our concerns and she asked if she could share it with the inpatient unit team. The Physio is coming on Monday to see exactly what he CAN do - shouldn't take long as not much!

Samantha - thank you for that post. It helps to know I'm not alone and that someone else has walked this journey and come out the other side. Thank you.xxx

Pam - I love your positive attitude. Good for you, I hope the trial drug brings you both some quality of life and it would be marvellous if it helped him feel a little better emotionally too.

Love to all.xxxx

Good for you Pam - will be interesting to see how you get on and I will see if I can persuade Clive to follow you.

Thanks for posts on the |Novocure trial - Paris is the nearest but you only have to go across once a month and as far as I can see that is the only cost - the temozolomide is prescribed and managed here and other costs covered by the EII card (or whatever it is now).  We are not too far from London to consider the Eurostar once a month. It is more that since the consultant so doubtful Clive is similarly not keen and persuading him is the difficult bit - he has trouble with all of the drugs he has at the moment.

Sue thanks for the support - it is so tricky. What alternatives are you doing? Would they be good for us to try?

Love to all

Ange & Naomi - lots of love and strength to you both especially tonight

Wendy XXX

Well, I had to wait til my husband came home from work at 7 tonight before I could go and visit dad as no way was I taking my baby son again! It was actually a really nice time to go and it was the best visit I'd had with dad so far.

Firstly, I genuinely hope what I'm about to say about hospice care doesn't offend anyone because honestly that isn't my intention and the hospice dad is at is amazing, great care and wonderful staff BUT it is my opinion that they are not geared up to helping patients who have dementia-like symptoms. Today dad's DR tripled his steroids. The nurse told me that dad had got very angry and upset and that "the trouble is, he didn't remember the DR telling him yesterday they would be being increased". NO WAY! REALLY! Aaaagh. He has advanced brain cancer, he can't remember what he did half an hour ago, let alone yesterday. They are also a little taken aback when dad can't tell them until it's too late he needs to use the toilet. They are lovely though and I really can't fault the level of care they are givng dad. Someone sits with him and feeds him every last mouthful of his meals and drinks.

Dad was in bed when I got there but managed to get himself in to a semi-supine position resting on his forearms. That is the most he's moved in about five days! He even laughed when I put his drink straw up his nose and spilt it all over him ....!

There was a moment when he was quite lucid, so much so it took me by surprise. He said he didn't belong in there wanted to go home and sleep downstairs there. It's so heartbreaking to hear him say that as I'm not overly sure mum could cope with that.

He told me he loved me twice - after he'd told me he'd swum 25 lengths of the "hotel" pool that morning haha! - so I'm going to bed feeling really comforted tonight.

Love to all.

Naomi.xx

Ah Naomi - its the most positive post I have heard form you and so uplifting - xxxx

pam - hope you get your presription and good luck with it

Ange - Phew, I was lucky my son is older and supportive of me.  Your daughter sounds amazing, I can se her growing up to want ot be a part of the "caring" services

jms x

Not been on here for a couple of days and so much has been going on.  Welcome to all the new people but sorry that you have had to join.

Ange,  your post about your daughter really touched me,  she sounds absolutley amazing and it still  gets me everytime to hear that children are having to go through this too.  As I have said before, our daughter is 11 so very similar in age

Naomi - so glad that you had a good visit with your dad.  You need to really push for the hosp bed if your dad is going back home.  Nicks only took 2 days from ordering it and that was over a weekend.  If they order one,  would suggest that someone is with your mum when they deliver it as they just dumped ours in the hallway and left,  I really struggled with it as they are so heavy and you have to work all the wires out etc so she doesn't need all that hassle.

Sue - so good to hear that your daughter has managed to come back to the UK with the kids on her own.  What an achievement for her and it must be so good for you to see her quality of life improving so much!

Well - in my world,  everything has turned on it's head and it's been an emotional week for all the right reasons for once.  When Nick lost his mobility back in May,  we were told that he may never walk again. Well,  the physio has been gob smacked!  From 2 weeks ago where he could not sit up, get out of bed let alone walk,  he is now sitting, getting out of his own hosp bed and he is now able to walk into the kitchen un-aided!  I broke down the first time I saw him,  it was just so overwhelming.

 Last night we managed to share a candlelit meal in the dining room just the two of us and it was so nice (even though I had to cut all his meal for him) the conversation was so good.  Just reminded me of old times, he just looks different with all the weight gain and head scars but who cares.  Think I have more than doubled in size since we met!

Has anyone heard off Pete? He doesn't seem to have been on for a while,  hope all is ok for him.

Have a good weekend and happy thoughts go out to everyone   x

Naomi, I had to laugh when you said about the straw.  It just goes to show that in the depths of our suffering, we are still able to laugh at the indignities that this disease throws at us.  Any "normal" person would probably think us insenstive, but I beleive that it's vital to play down these things and diffuse any bad feeling before it starts.

Last week, I was watching Ali's mum brush her teeth for her and she was asked if she wanted to spit out the gunk (sometimes she swallows it, which is fine with me).  Anyway, as soon as she was asked if she wanted to spit, she well and truely spat, before her mother was ready with a bowl.  I just had to laugh at how expertly Ali wrong-footed her mother.

And Liz, great to hear that your husband has managed to get back on his feet again.  No matter how long it'll be, it's good that it's happened and that you've had a "normal" evening's meal.

Sorry I've not been around for a few days, life here is pretty static.  Ali's in bed and sleeping/somnolent for pretty much all of the time except for meal-times.  She's getting the odd headache, but she's largely peacefully listening to the radio.

I'm not getting much sleep as I tend to stay awake or shallowly asleep listening for whether Ali's getting any headaches/discomfort in the night.

Her diabetes is now under largely under control with her sugars reading in the 4-5 region.  If it goes below 4, then we'll have to reduce the insulin.

Liz - that is amazing news! So pleased to read your post and hear good news. Must have been a very emotional meal. Long may his progress continue. He'll be chasing you up the stairs next! Shows how determined he is.

No, I haven't heard from Pete and I was wondering about him too. Does anyone ever hear from MrsSG? I think of her often and she hasn't posted for ages.

Love to all.

Naomi.xx

Just off to the hospice. Dad has been moved to the room next to the desk - kept trying to get out of bed in the night and fell over.

Oh dear. How is mum going to cope at home?? xxx

Not been on here as really not had any time - so hello everyone.

Naomi - Similar to you - mum has been in hospice for two weeks now and we are preparing for her to come home but before the hospice would let her, we had to have an assessment of her home yesterday by OT.  They said her bed, chair and other bits of stuff were not suitable.  To cut  along story short, they rang back yesterday afternoon to confirm bed and chair being delivered on Monday and then we will have a care plan meeting with the family members who look after on Monday afternoon at the hospice with physio, doc and SW to tell us all what we need to do for her.  They wouldn''t let her out until we did all this and we still have to fit some rails and stuff before they let her out.  Anyhow she has gone downhill alittle further and started having 'accidents' this morning so we have tried to talk her into having a catheter (spelling ?) fitted.  My dad will not cope with accidents and moving her quickly as she doesn't seem to get much warning any more.  Although we are constantly with her, we can't be there 24/7.

Joanna and Samantha - its wonderful that you still come on here and your experience and advice is invaluable at times.

Pete - good on Ali, you do write some funny stuff at times.

Cathy - don't know if you will get this but hope you can all have a wonderful holiday

xxx