We Talk Brain Tumours

Dear All,

Thank you for all your replies and accepting me into your conversations.

Debbie, thank you for the web links- I shall definately be taking a look at those and Joanne thank you for the link to the clinical trials link. I know that because of the intrcranial bleed, my husband's chances are slim to none for acceptance. I shall still pray for a miracle as I can't let him go. We met when we were 19 years old and I'm now 46. We have rarely been apart from each other. Opal, with PCV, we've been told that there is only a 10% chance of extension of life by a few months. PCV is very aggressive. Thank you all for your kind words.

Beedarsh

Dear Beedash

Think there are several new members now to this site. It helps so much to get replies and to know you are not alone. My husband only managed two PCV sessions, like you say, it is very aggressive (not to mention problems he had trying to understand the restrictive diet)

We to put all our hope into being accepted into a clinical trial but sadly this didnt happen.

keep strong

Opal x

Hi there Zoeteen,

What a horrible situation to try to get your head around. I'm almost sure some doctors underestimate patients' time left, in order to avoid giving false hope, but however long your mum has left - MAKE THE MOST OF EVERY SINGLE DAY with her.

I can only imagine the close relationship you both have, and the devastation you must be feeling, but keep thinking of all the good times, tell her how much you love her, give her cuddles and make however long she has left very special for you both.

My best, best wishes to you, your mum and all your family - stay in touch, good and bad, and we'll be here to support you whenever you need a friendly word.

Stay strong, love.

Debbie xx

Hi all, hope everyone is as well as possible. IDOF im so sorry for your loss honey, my mum is also ill with gbm 4 and i darent even imagine how you must be feeling at the end of it all. I am praying that you find strength and comfort at this sad time. Unfortunately we have also had bad news this wk following my mums admission to hospital. An mri has shown progression and they will have to stop treatment so we are now trying to get a palliative care package in place so she can come home. In a way im relieved she hasnt gotto go through any more pcv treatment as it made her so ill. Im just terrified of what the future holds. Hope you are all coping as well as possible Lou Xx

Good morning all,

So sorry to see new passengers boarding almost daily.   Beedarsh,  Zoeteen and all others who have needed to seek us out, I know you would sooner not be here, but welcome.  As you have quickly found out, there are some truly wonderful folk on here who despite their own traumas, immediately offer support and advise to all.  

Many new passengers, but same old driver!  Love to you all.  Martyn XXXX

I just wanted to welcome all the new people on this board, you have not been accepted into our conversations YOU ARE MORE THAN WELCOME HERE - just wish none of us had to be!

I would mention you all by name if not for fear of missing someone out, my short-term memory is akin to Dorey from Finding Nemo and I scan the messages but can't tell you how many times I have to either open a new browser and wait 10 mins to get onto this page (for some reason this site is sooooooooooooo slow for me) or cancel my message and go back through the replies to check who I am talking to or about

I belong to lots of brain tumour groups - mostly populated by Americans/ Canadians who seem to be able to self-advocate better than us - perhaps because their insurance companies pay for treatment and we get ours free - maybe?  But they take lots of different supplements that at the moment I am too scared to try.

I've read lots of positive posts about DCA also an anti-depressant (which should be easy enough to get our GP's to prescribe, I mean being told you have a brain tumour isn't going to make you happy is it !) I know a few people, including one patient who is a macmember living in NZ that takes it - CLOMIPRAMINE.  I've put a link to a passage about its use for BT's (not an endorsement just info)

CLOMIPRAMINE

I am just throwing these suggestions out there, I do not endorse them or anything, just think that sometimes knowledge is power (it can also be dangerous so another oxymoron).

Hope others can help give all the newcomers a helping hand along this journey (sometimes feels more like a war to me).

Love & Strength to all,

Dear Debs

Thanks for Clomipramine link, I will discuss with our GP but anything that may improve my husbands quality of life is worth a try.It is an antidepressant that has been around a long time, used to be called brand name Anafranil, and helps to elevate mood.

I overslept this morning and my husband thought he would run his bath...woke up to water pouring through kitchen ceiling...at least floor has been washed now.

Opal

Opal, you made me laugh - thanks.  I have an image of you bleary eyed up to your ankles in water and wondering where to start.  I know its not really funny but have been there with the kitchen sink.

I don't know anything about Clomipramine as an anti depressant but I understand that it should not be given with MAOIs and Procarbazine (of PCV fame) is a MAOI.  I don't know if there needs to be a wash out period before starting the Clomipramide but it would be workth checking if you are going to discuss with your GP

For those hearing PCV as the awful chemo - I have to confess I was really worried when Paul started it but he has just completed 5 cycles and no real side effects until the last one when platelets very low (Procarbazine now stopped as tumour progressing) but he does also have a DVT so is on anticoagulants which don't help.  The only other side effect was a real bad hangover after he had a glass of red wine - one of the prohibited foodstuffs, and this was a few days after stopping the tablets.

jms

Thanks to all your lovely replies advice etc, we are making the most of our time together, I have 3 sisters and a wonderull stepdad and husband and family myself so support is quite good, we are experienceing bickering/jealousy with one sister and snide comments etc is this common??? mainly aimed at my husband and the time we spend with my mum, nothing unusual as like I said we see each other every day, so I cant understand her attitude!! maybe her way of hurting and we are the targets of her pain at the moment, I dont know!!

Opal you made me smile xxx

Zoeteen, I suspect your sister is just so angry and frustrated with the whole situation, she is taking it out on her nearest and dearest, without realising how hurtful it can be. You just keep doing what you're doing, and she will come round I'm sure. 

Glad you have such a great family - it really does make all the difference and I feel for anyone who doesn't have the same kind of support that we have. 

Keep your chin up xxx