Glioblastoma Why Why Why <br/>

hi all i only registered today as am desperatley trying to find out some of what the future has in store.

My dad who is 56 has been diagnosed with grade 1v glioblastoma. It is not operable and his radio and chemo therapies are due to commence on 27th may. His symptoms have been mainly confusion forgetting what year it is peoples names etc also his walking has become slightly wobbly.... my mum who has been married to him for 36 years immediatly said " he is not right" so after going to local hospital he had ct scan ( he was unable to have mri scan apparently due to a coil in his brain already from a haemorrage 12 years ago which he survived). he was then sent to addembrokes where he had a biopsy 8 days later my dad mum me and my 2 sisters all went together to receive news from neurosurgen it was hard to take especially as dad insisted on a prognosis which was with treatment 12 months.

he has been postive from that day and told us to be the same. Unfortunatley yesterday he had his 1st seizure which has knocked him back a bit but he is ok and is ready to start battle again. The seizure was very frightening my mum told me in the ambulance he went from just a trembling arm and twitching eye to all of a sudden turning purple rigid twisting and eyes closed. she said the paramedics then cut his shirt open which made her terrified . the seizure lasted 5 minutes but have seen here today they can last lot longer. are there different types of seizures or are they pretty much the same ??

i have already gained strength from reading peoples courage on here as today the simplest thing seeing my dad on hospital bed eating a cheese sandwich looking completely fine and without a worry in the world forced me to leave the room and cry. i have 2 sisters and my mum as well as my dad who i need to stay strong for.

Becca I'm so sad to read about your Dad. Sending you and your family strength & hugs xx



Lorraine sorry to hear your mum isn't so well either. Hope your birthday isn't too sad. Lovely words on your bracelet.



Lesley thinking of you and your dad too - he's been through a lot.



Gayle am I right that you and Emma are meeting. That will be great. I haven't had a chance to read all the posts so not sure how it's come about but how great to meet each other when you have given each other so much support.



Christie how was your scan? I'll have a read back to see. Hope you're well xx



Peter I'm sorry you find yourself here. As you have probably seen it is a great place to come for support, advice and just to be able to 'talk' to people who understand what you're going through. What an awful shock this must be for you all, it's just such an awful thing. It is my Dad who has gbm too although he is 64. Do ask questions if you want to as people here all have such different experiences as you will see on their profiles. My Dad did have surgery and has finished his radiotherapy. He is currently about to start the 3rd lot of temodal and unfortunately is so exhausted that he's not doing much. It's so different for everyone though so I always have to remind myself not to compare. I hope your dad won't have too much more trouble with seizures, that must have been scary. Is he on anti-seizure medication now? Anyway take care. Sending you hugs & strength too.



Sorry but have to rush off now (dinner time for the baby!) but hugs to all and thinking of you as always xxx

Hello

I really hope posting this post doesnt upset anyone and I dont want to sound negative but it was really bad news yesterday, the radiotherapy and chemo did work a little but not enough, the tumour has grown quite rapidly since first diagnosed, they showed us the scans and it as at least doubled in size, they were very blunt that it is not looking good for Stephen, the only chance that they have is to operate again very soon they are going to try and remove 90% and insert Gliadel Wafers, they basically said if he didnt go ahead with this it wouldnt be long but at the same time if they we do go ahead it could leave him with no movement down his right side.

We are going to go ahead because this is Stephens only chance and pray to god that it works for him and he doesnt lose any movement.

I am devastated and so frightened, I cant stop crying and I know I need to stay positive but it is really hard.


Love to everyone sorry I cant talk to you all individually but I will do soon xxxxxxx

sorry i havnt written in a while my computer is a nightmare, been feeling more tired lately which is fustrating because there is lots i want to do but it could be worse so i wont complain.

peter so sorry to see youve found your self on here also. i hope things are ok

greentree- hello :) the scan was looking good, there was no growth but as it was only 4 weeks after the radio T finished there is a bit which he said they are keeping an eye on.

also sorry to read from a few of you that things are not so great at the moment, i hope so much things get better for eveyone!

sending SO SO SO SO SO MUCH LOVE

Hi everyone

A super quick post from me as I am so ill and tired, myself and the lovely Emma managed to get through 5 bottles of wine, and then we managed to stagger a mile to the pub, then Emma's brother in law dropped us off in Kilmarnock, another pub, Emma on double whiskeys and me on the double vodkas we eventually found a taxi, decided to go home rather than our first idea of Glasgow thankfully!! not many memories after that until Martin and the firemen woke us up!! then back to bed Emma made her flight home by the skin of her teeth!! We had a lovely time, unfortunetly dont remeber it all, sending you big hugs Emma, miss you already. xxx

Lorraine have a very happy birthday, your bracelet sounds gorgeous and well deserved to you love, hope you enjoyed your birthday as much as possible, hope your mum is feeling much better, sorry we missed you last night, if you read above you shall see why, speak to you soon. xxx

Becca, sorry to learn of your bad news, Emma and I got your message today, sorry that we missed you, thinking of you and your lovely family. xxx

Joan, great too hear that you are into caravaning, it is such a fabulous life for the kids and Martin and I both love it too, glad to hear that you all go too. hope you are still enjoying your lovely walks, and not forgetting the cha cha slide. xxx

Julie, so sorry to hear your news, but have glidel wafers are good and are not used 90% of the tumour has to be moved to be eligible, so that sounds hopeful, love to you. xxx

Lesley, hope things are better for you, is your dad home yet, did you mention the lamotourgine?? xxx

Diane ((((((((((bighugs))))) xxx

Carrie, Rona, Jay, susan and everyone else sending you all love, I really must go my eyes are closing. xx

love Gayle. xxx

Hello all. I feel like I just use you lovely people for info at the minute, but after chasing round after a 7 month old all day im ready for bed about 4 mins after him! I just wanted to know about any supplements people with gbm may benefit from taking? I have seen posts mentioning supplements and thought anythings worth a go! Jamie is having his mask fitted for radiotherapy this week and will begin the course 1st July. The receptionist booking the appointment mentioned another mri scan for next tuesday which i instantly began to panic about! I think I have now come to terms, well not come to terms maybe say its starting to sink in the fact that we wont be growing old together and he wont see our baby Connor reach milestones like exams, driving etc (crying so obviously not come to terms he,he!) but the thing that still gets me is the way this nasty thing takes them. I have read posts about this cruel decline and how some people are unable to function at all, thats the thing that scares me the most watching this lovely strong, independant man waste away before my eyes.

I hope I get to know everyone well during our journey as it seems you offer such great support to everyone no matter what stage you are all at and for ladies like Emma and Carrie to post once they have lost their loved ones astounds me.

Thanky you, love Laura.x

hi everyone
have posted some news on WTBT , sorry can't repeat it all here, must do the copy and paste thing again. we are coping, I think, as well as we can.
Becca, have replied to you on wtbt
lesley, hope your dad is ok, he just seems to get over one thing then... its not fair.
Julie, i'm so sorry to hear your news, and do hope the second operation goes well. I know that some people can do well after second surgeries so here's hoping. whatever the outcome you'll know you did all you could to fight the monster.
Sallye, you'll be pleased mum finishes rt soon, its hard to predict how long the tiredness lasts as everyone is different, but it may be a good few weeks I'm afraid. sometimes though jsut the boost of knowing rt is finished can help I'm sure. she'll still need plenty of rest. I am the same with people being nice to me, i'm ok till then, then I just crumble!
Laura, please try not to look too far into the future and just take each day as it is. everyone's experience is different, even at the end.
Gayle, glad you and Emma had a great time.
Joan, nice ot hear from you and great that David is a little better now. what you said about things being fragile is so true, but when you have a good weekend like that its good to forget a little and live life again!
finally, happy birthday to Lorraine, just a youngster
love to all
Diane xx

Hi Laura

just a quick note as on my way to bed - We use a lot of supplements - some I think are really important

A basic one is a good Aloe Vera juice easy to take daily in some fruit juice - boosts the immune system generally when it's about to take a battering with chemo etc

Chemo hits the liver hence nausea etc so it's a good idea to get onto MilkThistle - any health shop will have it - very protective of liver function and therefore general well-being. David also takes CoQ10 enzyme - very protective of the heart during chemo. You may also be interested in Astragalus as it supposedly works to increase efficacy of chemo but helps the body cope with chemo (Google it)

One side-effect of Brain radiotherapy is oedema and it's almost inevitable that Jamie's steroid dose will go up. Steroids may work wonders with swelling but have heavy side-effects long term. David takes Bromelain (1500mg daily) - it's just pineapple extract but a very good anti-inflammatory for the brain. He also takes Boswellic Acid (Frankincense) - about 1500mg a day - quite a high dose but really very safe - there's a lot of research going on re Boswellic Acid for brain tumours - it's probably very wise to google all this yourself - We made decisions to use supplements but they remain controversial for some.

We also use Vitamin D (3000mg daily) and Selenium. Also Biocare's Anti-oxident complex which has turmeric and other good things in. One more!! David takes Flax Oil everyday in yoghurt - Google 'Johanna Budwig'...

all this sounds pretty faddy but i have to say David has remained in good health throughout treatment despite regrowth .. We have regrowth so obviously we have no miracle cure going on - the prognosis stands like a horrible monolith in front of our eyes all the time BUT his quality of life remains good- Healthy appetite, no real fatigue, minimal nausea during chemo - perhaps I'm deluding myself but i put a lot of his health down to the protection and boosting his system gets from the supplements - It is expensive however and thats a heavy thing when you've lost a wage in the family.

Really Laura, i wouldn't like to make false claims re supplements - but for us they've helped even to the extent that you feel at least you've given it your best shot.

If you want a really good site try Canceractive - it's really helpful and interesting - look at the section on diet - giving up processed sugar, red meat, dairy products - you might find it useful



Hope this helps- It's a tricky subject - we have an excellent consultant but she is not sympathetic to supplements etc - so we've done this under our own steam - this may not be something you feel comfortable with - If nothing else, looking at sugar etc in the diet may help. Oh yeah and lots of Green Tea!!!!!!

Hope i haven't bored you - always willing to talk about what we've tried !! And don't worry about accepting the prognosis - I veer all the time between the depths of despair and ridiculous hope, generally falling somewhere in the middle most days... It's not about being in denial or giving up either - it's just trying to make sense of this awful thing that has happened so you can get on with living your daily life as best you can - Keep your chin up and keep your faith

lots of love to you

Joan xxx



LOTS OF LOVE TO ALL - Thinking of each and everyone tonight and saying some prayers xxxxxxx

Oh yes Laura - nearly forgot - Fish Oils, Vitamin B and Zinc - haha - I sound like a nutter...lol

Joan xxxxx