We Talk Brain Tumours

Will most certainly do my best Sue, thank you.  Hope you don't have to wait too long for the scan results, anticipation is so hard, people don't realise do they? Anyway, take care the both of you xx

And to everyone else, take care too xxx

Jo

You may not realise this currently, but you and I have so much in common!  My father has 2 G4 Gliomas, diagnosed last June and we have been on such a roller coaster ever since his diagnosis.

The biggest change to him does seem to be his personality - I have always said that it is doubly cruel that not only will I lose my dad, but that the version I have got of him now is not such a good one!

Dad did get worse towards the end of his radiotherapy in terms of his behaviour/attitude and I am sure that part of it was him feeling so out of control and a mourning for the loss of his old life.

He had a delay in starting his chemo for a variety of medical reasons, so although he finished radiotherapy in Sept, he only started his chemo in Dec and is just about to have his 6th cycle.

He has got better in terms of his attitude and one thing that I have learnt is that if he rants and shouts at me, I shouldn't be afraid of shouting back!!  It doesn't always work for my mum, but somehow when I shout back, it calms him down!  I have also learnt the balance between not molly-coddling him and giving him a bit of a boot up the backside (in a nice way) on occasions.

To answer your specific questions:

- his chemo doseage is stronger than the original one

- he is also on steroids to control swelling but these have to be carefully monitored as they can increase his anxiety, which leads to him being less predictable in terms of his attitude and behaviour

- the mood swings have calmed down, but also I think that we have learned to deal with them more effectively so we are attacking the issue from both sides

- how do we cope?  Sometimes well, sometimes not and sometimes we just howl and sob!  People always say that we have to remember that it is the illness not the person - much easier said than done.  If I have had a particularly bad day then I have to tell myself that the day is over and tomorrow we will try again and try to do better.  Sometimes when he is ranting, trying to justify things just makes it worse and sometimes we should just acknowledge how unfair, cruel and bloody awful this horrific disease is.

In Sept we thought that we were going to lose him very suddenly - that didn't happen and now I try and treat each day that I have with him as a blessing - even through all this madness, there have been some very special times, and Dad and I are so much closer.

Whilst I would never be arrogant enough to suggest that I am an expert in this illness, I am some months further down the experience (with, it seems, some parallels), so if you ever want to compare notes, please feel free to give me a shout.

As I said to my mum, only today, "chin up, tomorrow let's plan for a great day!".

Regards

Samantha

Hello All

Haven't been on here for a little while.  Dad is still waiting to start his r/t should be Monday now.  He has had a very frustratiing day at City Hospital today, a chambolic day, tonnes of delays and stress that he didn't need but beggers can't be choosers, the NHS tries its best I guess.

Sometimes when I read these posts it does freak me out a bit I often sit in tears after reading the posts.  I know it is a horrible journey that you just cannot prepare for.  Me and my family are only at the beginning in a way but I think what people say is right, just try and focus on today and not worry too much about what could be yet.

Anyway, hope everyone had a nice bank holiday, I do think of you all on a daily basis.  This site is an excellent support network.  Take care everyone xxx

Co-trimoxazole, Temozolomide, metoclopramide these are the drugs my dad has been given today - they are chemo drugs right?  Sorry to sound like an idiot but my dad has not been given a proper explanation about his treatment plan.  Is it normal to do radiotherapy and chemotherapy at the same?

Hi LDW,

Yes it is normal to do the radiotherapy and chemo at the same time for the first 6 weeks. Then the RT stops (you can only have 30 doses so that's your limit reached). Then after a break (which I think is about 6 weeks but other people will probably know too) the chemo will start again - 5 days per month for 6 months is teh standard treatment. The RT is supposed to keep working for some time after treatment stops, hence people often being still extremely tired several weeks after all treatment has stopped.

I think that the temolozide is the only chemo drug - but I may be wrong. The other drugs are almost certainly anti-sickness drugs. Sorry - I can't go back and look at your post while I'm typing to see what tehy're called and see if I recognise them. Failing better answers from other people on here I would Google!!!

Thank you SallyE.  That has made me feel a lot better.  I live in Southampton and dad is in Nottingham and the treatment plan just hasn't been explained very well so have just had my dad on the phone feeling very frustrated and I am an information person so thats why I came straight on here to get help from my virtual buddies.

Any other advice would be gratefully recevied.  Sorry to be needy, but I am having one of "those days" today. 

XXX

Hi LDW - co-trimoxazole is an antibiotic given I think for bacterial infections. Temozolomide is the chemo drug and metoclopramide is an anti sickness drug. Its trial and error with the anti sickness drugs as my Hubby used to take his metclopramide and hour before his temozolomide and we found this stopped his sickness. As for chemo/radio he had 42 days of radiotherapy followed by a month off and then 6 months of 5 days of chemo then 23 days off. There are varying regimes according to whatever his oncologist feels best. Good luck x

Thanks very much for your post.

I dont undertsand what the anti bactria drug is.  I am going to write to his Consultant to try and get some sort of explanation about his treatment plan.  Neuros might be really clever but communication is not their strong point!!

Feeling kind of positive now.  Dad is really well right now, totally sympton free which is weird considering he has a brain tumour, just hoping he is strong and well during the treatment and that the anti-sickness medication can help manage all the side effects -wishful thinking hey!

LDW,

My Dad was also given the anti-bacteria drug and the explanation that he was given was that it would help "protect" him whilst his immune system started to be less effective.

One other thing that I didn't know until it happened was that the temazolomide that he takes when he is on his 5 days tablets, 23 days off is a higher doseage than the one given when it is in conjunction with the radiotherapy.  I panicked a bit because I thought the higher doseage meant that he was getting worse!

Completely agree about neuros not having communication as their strong point - my Dad has just been in hospital for 5 days for some further surgery and apart from the surgery day itself, have not seen Neurosurgeon since - and Dad was discharged today!!

Samantha

Hello All

I did write to the Consultant today and he replied fairly swiftly.  Have to be honest his response was very defensive and un-caring.  It does make it more difficult I just hope his clinical judgements over compensate for his vile bed-side manner which is pretty inconsistent!!  Today has not been a good day.  You naively think that all clinicians are lovely nice friendly people loving carers but sadly it is not the case. 

Thanks for all of the advice given.  speak soon -stay positive xxx