Glioblastoma Why Why Why <br/>

My mum finished her first cycle of 5/28 TMZ nearly 2 weeks ago. During the 6 weeks of RT and TMZ she suffereed very badly from sever diarrhoea so she actually only got about 4 weeks of chemo in the end as she was too weak to carry on and had lost so much weight. At the time they didn't know whay she was getting diarhoea so badly but finally decided she had campilo bacta and it wasn't te chemo at all. She then had 7 weeks off to give her a better chance of rebuilding up her strength. She managed the 5 days without any problems, so we thought great, but on day 5 she bagan to feel rough. Then 2 days later the diarrhoea started again and it got so bad last week, coupled with the heat, that they took her into hospital to be put on a drip. Has anyone else expeienced really bad diarrhoea with the TMZ - the consultant says it is most unusual and that TMZ doesn't ususally do this in his experience.

Hi Everyone,

I posted this message on the main tumour thread, and had some very lovely replies, I thought I would report it here as it seems more relevent to Dad.

Hi Everyone,

Well we got the news from the Consultant, last Thursday, and Dad has a Grade 4 Glioblastoma multiform..now waiting for him to be transferred to our local hospital, fingers crossed it will be soon and they can discuss possible treatment options and also selfishly it will be much closer to my home and make visiting so much easier (it's currently an 100 mile round trip)
His tumour is in his motor cortex, so was wondering if anyone has experience of this and what to expect in the coming weeks & months...?

Thanks

Claire

I haven't had much chance to come on here lately but have just been reading and so sad to see more sad news. Thinking of you all and sending you cyber hugs xx



Hi Claire. I'm sorry you find yourself here. My Dad has GBM too. The standard treatment is 6 weeks of radiotherapy (every day mon-fri) and daily chemotherapy with this. The chemotherapy is a tablet called temozolomide (tmz) which they take at home. Then once this is finished they get a break of around a month and then it's tmz for 5 days out of every month for 6 months. Hope that makes sense. You may already know this. The chemo is usually pretty good in terms of side effects but of course everyone is different. My Dad is half way through the 6 months part and is extremely tired from it. The first 6 weeks of treatment went ok though and he just lost hair over the radiotherapy site which is slowly returning. It's a scary time and unfortunately no-one can say what will happen as everyone is different. My feeling is that no-one knows what is around the corner anyway so we may as well all make the most of each day.



Dianne very glad to hear of H's scan result. Know what you mean though - my Dad had a good scan but at the end of the day you're still in this horrible situation so it's a bit hard to know what to feel. It's certainly good news for now though.



My Dad is feeling awful as he is so worried and nervous about what is happening and more to the point what the future may hold. He seems to be finding the not knowing and of course the not being able to escape from this situation incredibly difficult. It's hard to know how to help as I wish I could just make it all go away.



Rona xxx

Hi Rona

Yes good news for now and thats how we have to look at it, although others do not understand that, they interpret the news of a good scan as that everything is ok. Your Dad's unrest at not knowing what the future holds is how I feel but no one can give the answers. As for how you can help, it sounds as if just being there for him is a great comfort as he can talk to you and articulate his fears. Although it must be so hard on you as its your Dad. There is a lot of bad news on the posts lately, but you are spot on when you say no one knows what is around the corner so we should all live each day to the max- Hannah does but we sometimes find it hard to keep up with her! I even had a go of rock climbing last week- didn't want to but felt ashamed when she had a go even though she has a left sided weakness after the stroke. Take care everyone Love Diannejx

Claire - Its so sad that there is again someone new to this thread, it's my husband that as GBM4. He as had his 6 week radio and chemotherapy after de-bulking and as now just finished his 2nd cycle of 6 month chemo. The chemo does make a lot more tired than usual but thankfully so far no sickness. You will be able to read more detail on my profile. Take care.
MollieXX

Jennifer, so sorry to read of your fathers passing, thinking of you and your family. xxx

We just popped over home to check the mail etc, Martin has been put back on the dex as the blood tests at the hospital last week showed adrenalin glands are not working properly after the long usage of dex so hopefully we will try to come off again soon, he is much more like himslef again all the aches and pains have eased and also Martin is eating much better, thankfully, we have a scan next tuesday so hears hoping and praying that it is as good as the last one. Christie just to say we got the goji juice, Martin says its ok here's hoping it helps, love to you all thinking of you all.

love Gayle. xxx

hi everyone - sorry i havnt posted in a long time my computer was in a state but we have a new one now.
been trying to catch up and jenifer i am so sory to hear of your dads passing , all my love!

started my 3rd cycle of tzm yesterday, goin ok so far just been veeery tired the past week, cant stay awake for a day, apparently thats normal at this stage too.

gayle glad to hear martin is feeling a bit better.

also another little 'remidy' apparently grapefruite juice helps your body absorb the chemo more aswell. im getting pumped with alot of juices at the moment lol.

also has anyone heard of 'aspatame' if not its an artificial sweetner which is in ALOT of things and is actually thought to of been a cause of cancer. in America it's labeled with 'may cause cancer' however over here it has a few different names.
Aspatame
phenalenlalyn
acusulfame
i cant remember the propper spellings sorry, its actualyl banned in most countries in europe in childrens products.
its in EEEEEVERYTHING mostly diet stuff like diet coke. but havnt the coke with suger in will be better for you :)

take care everyone
thinking of you all the time xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Gayle I'm glad to ehar Martin is more like his normal self. It is great he had that blood test as it is really important not to miss that and can often happen after such a long course of steroids even if they are weaned off slowly. It is a shame to be back on the steroids but is important for now and he will be able to get off them again. I'm actually trying to organise a blood test for my Dad to check the same thing. It's also important to remember that if he becomes unwell with an infection (ie. flu or something) that he will need extra steroids. His body would normally make more in sickness but isn't able to do so at the moment. Thinking of you & fingers all crossed for the scan, when do you hear the results?



Christie nice to hear from you again. Make sure you get plenty of rest. It is normal to feel so tired during treatment and you should have a nap when your body needs one. Take care xx



Dianne thanks for your post. It's nice to feel support xx