We Talk Brain Tumours

Hi Martyn, thanks for reply Re Dex i think thats what we are going to try and hopefully this time all will be well! Take careXX

MollieXX

Hello and thank you very much for all your replies, it's really helpful to be able to compare notes.

I phoned up my mums Macmillan nurse this morning and explained the situation and she relayed it to the Oncologist who said that she didn't think my mum should have another scan and that her symptoms were due to her having the seizure which apparently causes the brain to swell, must say I wasn't aware that a seizure could cause swelling.  She has told me to up the dose of my mums steroids.

She had a planning scan two days ago in conjunction with her mask, the Oncologist told me today that this was not a diagnostic scan but she should be able to tell from it if there was any regrowth which apparently there isn't.  Must say I am disappointed she wont be offered another diagnostic scan as half of me still thinks it is the tumour growing that is causing these symptoms.  This evening my brother thought her right eye looked odd, I did too the lid looks heavy and the eye seems to be slightly bulging (I had noticed this before the surgery too) her tumour was on the right temporal/parietal lobe with some growth into the Corpus callosum.

Anyway thanks for letting be bend my ear.

I wish everyone here strength and peace as I now know (unfortunately)  just how damn difficult and life changing  a BT is for the patient and their loved ones.

Fee x

Fee, my husbands eyes have also looked bulgy compared to normal since being diagnosed although the lids don't look any heavier.  He has also been on steroids since seizures started as apparently this helps with any excess swelling/fluid.  He is 32 years old and is getting to the end of his treatment which is making him more scared than usual.

As anyone had a problem with Follate levels when bloods have been taken, taking hubby to Doc's tonight as they have rang to say they are low, does anyone know what can help to get them back up without having to take anymore medication?

MollieXX

Mollie,

I believe that leafy green vegetables including broccoli, spinach, asparagus and fortified grains (cereal's) helps to increase folic/follate levels.  Also liver is very high in folates.

Hope this helps.

Debs xx

Hi Debs,  thanks for that he wants to take as little meds as possible, i'll pump him full of greens and suffer the possible smell they'll end up making!

Take care

MollieXX

Good luck LOL

My phosphate levels fall on TMZ but thankfully I just have to eat banana's and dark chocolate...not the worst things in the world to me

Hi Mollie,

Just one little tip if I may?

The folate in vegetables etc is damaged by heat, so hubby would get a higher concentration if he could eat them raw, or I'm not sure, but quickly microwaved?

Martyn XXXX

Good afternoon all,

I wonder if anyone knows - Is the radiotherapy treatment used for BT's Gamma knife? Or does it vary from hospital to hospital?

Thanks

X

There are different types of radiotherapy. Whole brain radiotherapy is one or (as my husband has had) radiosurgery or gamma knife. This targets the specific tumours therefore the side effects are minimal. I'm not sure if this works better on different types of tumours. My husband had this done at Sheffield Hospital and you can go on their website and find out abit more.

Jo

Hi Nerak,

I recently asked our ns about Gamma knife treatment but he told us that it's not used here (The Netherlands) for gbm's as these tumours do not have hard edges. It is also used with small (sometimes multiple) tumours I believe.

But it's always worth asking your doctors as I have read about several treatment variations from hospital to hospital.

Best wishes,

CHxx