We Talk Brain Tumours

Hi Stephen

Sorry you have had to join us there seem to be so many joining together.  I hope the Drs get  your mums seizures resolved soon, Paul had numerous fits when he was first diagnosed and they gave anti epileptic medication and high dose steroids to begin with, he continues with his anti epileptic meds and has the occassion seizure, often just twitching rather than full seizures.

Wishing you all the best as you await the scan results - the scans really raise the stress levels

JMS

just wanted to share this link, it shows the positive effect that Boswellia (plant based) has on brain edema, especially during RT.  Might save some of us having to hit the Dex steroid train!

BOSWELLIA TRIAL

Just to let you know that I had my 6 monthly MRI yesterday, and was lucky to have a great nurse & radiographer who were determined to get a line into my arm for the contrast rather than my hand after I told them the previous hospital managed to burst my vein and leave me looking like Hellboy for 4 days!  They even sent out for the smallest needle they had .

Now just have the stress of waiting till the 18th February for the results

Mixed news today.

The scans show no growth in the tumor.

However, the doctors need to find the correct balance of anti seizure and steroids to bring her back. She still has difficulty speaking and is very weak which is a worry.

Sending you my love and Support Debs, it never seems to get any easier - the waiting being the worst time.

Take care

Ann

I don't understand why the wait, Paul has been lucky enough to be given his results the same day except once when he was admitted and we had to wait 24 hours - that nearly killed me and was so stressful.  I understand the early response is not as accurate

Anyway, hope all goes well Debs and that the days pass quickly for you

The wait gets to me too.

With my mum, we know the tumor has now returned but we are still waiting to speak to an actual doctor about what the next step is.  My mum still has seizures but upto her seizure today, she was miles better than yesterday. I know it's the steroids doing this though.

Stephen.

Hi all,

Debs, best wishes for your results next week. Do I gather you can be a 'little bleeder'?  

To our newer passengers.     I apologise for not being as active on here as I should, but needs must here I'm afraid, I really don't know where the hours/days go.  Best wishes to you all.

Martyn.

Hi everyone

Thanks for your help on the DLA question.  Looks like events may be overtaking us a bit now.  Having been clear on the scans for almost 7 years, my poor husband has been suffering increasing headaches.  Last Sunday night was the worst, and he spend most of the night vomiting.  Rang the hospital and they've put him back on the steroids (6mg dexamethasone daily).  Worst thing was the confusion, which lasted for a couple of days until the dex kicked in.

He's going for a scan on Wednesday, and we'll get the results on the same day.  He says for the first time he feels like there is something growing back in his head.  Pretty tough after so long, but we got through it then and we'll get through it now!  On the upside, he's feeling better on the steroids which is good.  In fact., he's the best he's been for months, but we're under no illusions that it's only the effects of the steroids!

On another subject, anyone got experience of getting public sector ill health retirement with a brain tumour?  His application is about to go in, but I'm a bit concerned that if he needs chemo, and we let them know, they might refuse because all avenues of treatment haven't been exhausted.  Having said that, we applied on the basis of the late effects of radiotherapy causing so many problems and they ain't going away!

Martyn, I am sure I can be a little bleeder but that has nothing to do with my veins LOL  Unfortunately after the six rounds of TMZ my veins have made like a submarine "dive, dive, dive" and take more than a little coaxing to surface!  Hope things aren't too bad at home for you and Doreen.

Felix, can I ask if your husband has had an AO for the last 7 years or has it turned in this time.  I only ask as the owner of a AO3 for 2 years myself and the prognosis I have given was half of that time.  I am sorry to hear he is experiencing problems and wish you luck for his scan.  I get my results on Friday, could do with some positive vibes, am feeling pretty good but we all know that's not a watertight medical definition of 'being well'.

Love & strength to all on the train and a big hello to any new passengers.