Glioblastoma Why Why Why <br/>

Good Morning All,

I'm sorry I have a question about treatment as my mum and her husband are rather confused. At the moment she is just starting her second week of combined RT and temodal. Originally we were told it would be 5 days per week for 6 weeks. But actually the temodal is 7 days per week and the RT is only 4 days per week. This is because she started last week on a Tuesday. This week she has Friday off because it's Good Friday , the following week she has Easter Monday off. So my first question is, does this sound normal? Or is she being short-changed because of the Easter break?

Then she has 4 weeks off - is this completely off? No RT or temodal?

Then when she starts on the 6 months, what is the norm here regarding number of RT sessions and temodal doses?

SallyE

Carrie-I am so so sorry that your beloved B lost his fight.You have been truely amazing through these past months I have read your posts in admiration for your inner strength and drive to get B home....you did it and I thank you for being so supportive to the rest of us struggling with the devastation of this bloody illness.

Lisa-Im sorry to hear your father passed but glad to era that you were all there and it was a peaceful passing please post when you need to chat we are all here.

Jay-thinking of you all hope you are okxxxx

To everyone else reading this post I send you all the love strength and hope for the future,there are many new members that I dot know but welcome to you all sorry you find this low mood but three of our wonderful members have recently lost their fabulous husbands so its a very sad time for us all.Im finding posting really difficult as Im feeling so sad for all the loss of wonderful life.
Debbie xxxxxxxxxxxxxxxx
To everyom

Morning everyone

Emma so good to hear from you, you really are a trouper finding time to keep us up to date. I wept when I read your post, Matthew loved you right to the end and these beautiful words he spoke to you will be with you forever. big hugs to you and the girls xx

Carrie good to hear from you too, funny how life goes on even when a bit of us has died inside. Stay strong my friend. Love to you and the boys xx

Sallye, your Mum will get 30 days RT regardless of the holidays, you should have been given a schedule so count the days, if you didn't get one ask Shanne and she'll organise it for you, 30 days RT & 42 days Temodal. Then 4 full weeks with nothing before starting the 5days on & 23days off. They will probably double the dosage of the Temadol for the 1st round and if your Mum's ok with they will increase it again. Rob was really ill when they increased it so he was taken off and no other treatment given. If you are unsure about anything ask. We were like you at first and didn't quite take it all in but when we finally did ask they told us everything we needed to know and some!! Wish your Mum good luck from us, she is in good hands with Shanne around. xx

Debbie not spoken to you before as I am fairly new to the site (only 3weeks)but have made lots of new friends & lost a few this past week. Hope your Dad is doing ok and that you are coping with this terrible illness. It must be a huge relief for your parents to know that you are there for them, I don't know what I would have done without my 2 sons. Hope we speak again, xxx

Gayle hope Martin feels better soon, as if he doesn't have enough to cope with, you sometimes think someone's having a laugh at their expense the amount of things that get thrown at them. At least he has you and Martine to look after him. Stay strong, xxx

Lesley, Lisa, Rona, Jay and everyone else, thinking of you all.

Rob's still good thank God, but don't want to say too much as like tempting fate. Took him out to Homebase today to buy some rubber gloves?? no nothing kinky, he wants to clean out our pond, we'll see, I'll probably do the cleaning and he'll supervise but again he is showing an interest which can only be good.

Love to all of you,

Eileen xxx

I would just like to pass on my deepest sympthy to Emma at this time, my thoughts are with you.
My sister started her second cycle of PCV chemotheraphy, her doctor was very pleased that she has been able to tolerate this new treatment, so after her 3rd cycle in May she will have a scan to valuate how the treatment has been working. I.m just wondering has any of you dear carers have any experience of how successful PCV is?
I would also like to pass on to ddagent maybe some encouragement, my sister had fallen down my stairs and we all thought that maybe this was the tumour coming back, due to her disorientation, however after a few weeks in our local hospice it turned out to be swelling after the radiotherapy treatment, she improved greatly after steriods, I do hope this is the case for your dear dad. Passing on my best wishes to you all xxxx

Hi Everyone

I have noticed that like me trying to presents for family members when all the want to have is their health back is really hard.

I would like to recommend a website - http://www.bobbooks.co.uk/

I produced a beautiful book for my parents in less than three weeks altogether for their Golden Wedding Anniversary. I had all their old slides transferred to a disc and then made up the book using the website. You can produce calendars as well.
I was told about it by a friend and it is something that my Dad will be able to look back on in the future. Another thing is digital photo frames, or buy a star and name it for them.

Take Care Allison xx

Hi folks,

Emma & Carrie - just want to let you know Im thinking of you two lovely ladies. The sadness and disbelief is still unbelievable - much love and strength. xx

Gayle - Hope Martin's chest infection is improving. Martine will be on school holidays now wont she? Hope we get some nice weather for all the kids on hols. x

Becca - your soo good doing the 10k - pics at the finish line on facebook please lol! That sounds a lovely thing to do for your dad's 60th - i think i told you i was making up an album and i'll give it to him when he gets home at the weekend - you made one for your mum and dad a few months ago didnt you? - was crying at loads of the pictures, such fantastic memories - was also in hysterics at all the pictures of my sisters outfits over the years - they gave me some relief from the sadness! No ribenas im afraid...just cups of tetley!x

Lorraine - nice to hear from you again love! Did you get an answer back from Shanne about your mum's scan? I've never emailed her - i always phone - although she would probably use the word "stalk"! I dont think Scott is just saying that to cheer you up - your wee mum will most definatley perk up when she knows her favourite people are there just being with her. Enjoy your wee break from work...hope the sun shines for you...so true in saying the sun makes you feel happy....it was boiling (sort of!) in Edinburgh last Thurs and its the happiest ive been in yonks....horrible and windy today and im in a crap mood!! x

Eileen - I've just realise you live in Scotland - where is your hubby treated?? Hope your both enjoying the rubber gloves! Great if he gets an interest back in gardening, especially with the summer months coming up. I find that one of the sadest things - there's nothing much left that my dad can do that he was interested in - he's found a new hobby in trying to do the daily record crossword mind and he still loves to watch a game of footie - actually, he now watches corrie and emmerdale with my mum...something he completley detested before, strange!!

Debbie - hope you had a nice break at Haven - Amber was only 4 months when we went to Haggerston castle for a long weekend - it was fab...there's something nice and quaint about staying in a caravan!

Jakkity - no experience of PCV im afraid...or any chemo for that matter. I know its the older chemo but I think a few people on the thread maybe no more about it...hope someone comes along to help you out. x

Alison - thanks for the link to the website - will have a wee look in a bit. Your right about the only thing they would want is there health back....i would give up everything i own for that. xx

Well it looks like my dad may be getting out on Thursday...he now has a very angry cellulitus infection in the top of the leg which had the DVT...just to make things more complicated...so he's on antibiotics. I still find him confused and coming out with bizzare statements...he thought the people at the next table in the WRVS were talking about us...they obviously werent...anyway,

much love to joan, izzy, susan, diane, Rona, Jay and everyone i havent mentioned.
lesley xxx