We Talk Brain Tumours

Hi fee

My husband, who also had a GBM (glioblastoma) had regrowth of the tumour before radio and chemo therapy began. Within 5 weeks of the first surgery Harry started experiencing return symptoms and weakness down the left side of his body. Through quick actions by our Macmillan nurse Harry was admitted to hospital for a second debulk and started treatment 2 weeks later.

You are right to hate radio and chemo to start when there has been a possible change in the tumour, as any regrowth could affect the results of radio therapy working well.

I would think it was best to chase up your mum's consultant asap, GBM is a very aggressive tumour and need treating quickly.  I have heard recently that the NHS is trying to improve waiting times for cancer patients starting treatment ie radio and chemo therapy.  Certainly at the Birmingham QE hospital the waiting time for GBM treatment between diagnosis and treatment has been cut to 2 weeks. This i hope will improve people survival rate.

All the best to you and your mum x

Hi Fee

So sorry to hear of your Mother declining after her seizure. My husbands brain tumours are not GBM but he does take Tegretol for his seizures. I am sure someone will be able to advize you on this thread based on their experiences. It is good that your doctor is moving things along for an urgent scan. One thing that may be worth considering is that sometimes seizure medication can cause side effects similar to tumours, i.e. may affect memory, cognition and mobility. Some individuals tolerate this medication well, others develop a sort of toxicity to it and may need it adjusting or changing to a different type of antiepilepsy medication. The sacn is obviously paramaount, but if no change is found I would discuss medication with doctor. If I can help in any other way please ask xxx

Hi Fee

Sorry to read your post but wanted to reiterate what Lozzy suggested above.  My husband doesn't have your mum's kind of BT but has been on various anti seizure drugs and has recently started on yet another.  He has had adverse side affects of the drugs and agree with all the symptoms Lozzy listed - anti seizure drugs can sometimes also have the unfortuate side affect of increasing seizures - the drugs have to be finely tuned to an individual.  Also there is a period of time where the patient gets used to them - this could be up to a week of a stable dose.  Presently I am increasing my husband's dosage but have chosen to increase the night dosage to 3 tablets compared to 1 in the morning even though it is meant to be the same - he can't tolerate 3 tablets, it knocks him out so it's ok for nighttime but he doesn't want that during the day, they also make him feel spaced out so he would be confused etc.

I am not saying it's not to do with progession of the tumour, Nicky, knows only too well about that - so you are right to seek further medical advise so you know what is causing these symptoms.  BT's are always very complicated and never straight forward so be prepared for some very vague answers when you may feel that actually you know nothing more than you did before, I think most of us have and are going through that constantly, it is never black and white.  Best wishes x

Hello Fee, I'm sorry to read about your mum's diagnosis.  You've already had some excellent replies. After my partner's operation he also had to wait 4 weeks to start rt. I'm certain that it's a clinical decision to wait 4 weeks to give the operation time to heal before giving rt. RT is easy to have but it is very powerful and goes on working for up to 6 months after the daily treatment has finished

It's also my experience that it's a good idea to ask and push. Just because there is no definitive cure for gbm today does not mean that treatments are not urgent and important. Keep your medical team actively fighting on your behalf.

Listen to their reasons for doing what they are doing and push a bit if you think they could be fighting harder.

Best wishes,

CHxx

Hi Fee,

I'm glad you managed to make it over.  It isn't the easiest site to comprehend at the moment, but we have been assured it will get easier soon, mainly thanks to our trained investigator and negotiator Miss M, the M being for Mandy not Marples!

I did mention the support and advice available here and it seems that you have already begun to find it.  Chat again soon.

Good morning all, I now have a positive feeling about the future of this thread and just hope that Mac admin do make it far easier for new folks to locate us.

Best wishes to you all,

Martyn XXXX

I wholeheartedly agree Martyn,

Huge thanks to Mandy for collating all the ideas. xx

Amazing how a human response makes all the difference. Lets hope the site improves as soon as possible so more friends from the old thread can find us and access the wealth of info built up over the last few years..

Hope everyone is as well as possible today.

Love,

CHxx

Hallo Fee,

My husband also has GBM and was diagnosed in December 08. He is very unwell now but seizures have been present throughout his illness and although on high doses of Keppra and Lamotrogine they have never been totally controlled.

When his seizures have been signficant we have often seen a deterioration in his condition, as you described with your mother, increased confusion and drowsiness. However, after a few days there has often been a improvement  albeit slight and this may be the case with your mum.

I think with this disease it does vary so hugely from one person to another that it's very difficult to generalise.I hope the scan will tell you more. Thinking of you anyway.

Mandy thank you for your endeavours on our behalf, I love your e-mails!

Love to all

Jeanxx

Hi All,  Jean sorry to hear your husband is starting to deteriorate, thinking of you bothX

Fee, my husband as GBM and also suffers from seizures, he is on Epilim Chrono.

Martyn, Don't know if i've missed it but as Doreen had the results from her scan, hope you are both wellX

Yippee weekend away and no hiccups at all.  Hubby as got the pain back in his knees, ankles, feet and shoulders, lot worse than last time he is actually taking something for the pain, going to try to decrease the Dex see if that helps.

Hope everyone else is keeping ok.  Take care XX

MollieXX

Hi Mollie,

Pleased to read about your weekend away, I remember the last one only too well

We haven't had the results yet, I rang on Monday but the NS's secretary told me they hadn't had the report through as yet, but no news etc etc. Re reducing the dex, we found that no more than half mg per week eventually worked for us.

Martyn XXXX

Hi Fee,

Just looked back at your post and see that your mum is on Tegretol. Paul was previously taking Tegretol but had it changed by the hospice team as they said it was preventing the Dexamethasone from working. Not sure if your mum is taking  Dex but guess she is. When anticonvulsant was changed Paul's confusion etc dramatically improved. Just a thought.

Jeanx