We Talk Brain Tumours

Hi

I am new to this site and was having a browe and came accross this page.

I am trying to get info on Bone cancer that has come from a non cancerous brain tumour. My mum has had a brain tumour for over 10 years that has grown back 3 time, the last time it grew back she was also diagnosed with bone cancer. Apparently there is only 1 non cancerous brain tumour that causes bone cancer and because of this i cant find any info!!

If anyone else has come accross this i would be really grateful to hear from you.

Becky

Hi Becky - sorry you find yourself here.

However, you may find that we are not able to be so supportive as your post is, unfortunately, confusing and I wonder if you should contact the specialist consultant involved with your mums care to confirm the type of brain tumour and the treatment she needs for her bone cancer.  You see brain tumour's themselves are rare and primary brain tumours that spread to other parts are rarer but to read benign brain tumours causing cancer doesn't make sense (my husband has a benign brain tumour) as the two are completely different tumours.  If you were to tell us the actual name of the brain tumour, as there are many types, then perhaps this would help us to help you.

Mandy

Hi Becky,

I'm sorry that I can't help you as I know very litte of this. However, you may find some information on The Rare Cancer website. http://www.rarercancers.org.uk/

Hope it can help.

PEABS

Have popped in to see how you all are. Am so sorry that it's not been too good for many of you.

Mandy, here's a useless fact: 200 different types of cancer in the body and out of that 200, 120 of them are different types of brain cancer.....Where's this RESEARCH!!!

Am thinking of you all always.

Stay strong, as I know you all do.

Love PEABSXXXXX

Hello Becky,
I also cant help as I don't really understand your question or how a non malignant tumour can cause a malignant tumour.
Mandy's advice, as usual, is sound; see your mother's consultant and get the facts before you search on the internet. Otherwise you may get yourself unnecessarily confused and worried.
Miggins.

Well, as Frau Miggins said (it has to be Frau with a hat like that) what a bugger of a week; thinking about it the last six weeks or so on the thread have been pretty dire to say the least. But out of adversity has come a new strength to the thread.

Martyn - Can we swing by the goods yard and pick up a set of UK boggies; we appear to have picked up a carriage on the other side which is narrow gauge and it's causing a lot of vibration here in the guards van as the wheels clatter over the sleepers because they don't quite fit - I am sure all will be well once the adjustment is done - quite pleasant occupants don't you know ! :)

Does anyone have any experience of Keppra? (Levetiracetam). Additional anti seizure drugs that Jan has been prescribed. Seem to be good knock out tabs !

This afternoon the four of us assembled the christmas tree (very eco friendly here; this is the 10th year it has done and no homeless squirrels in sight) and of course it has been decorated as a team effort by Jan and the urchins. Effort rewarded by a quick visit to the local Italian eatery.

Smallest urchin "Daddy, is it Christmas eve?"

Daddy "Have you seen daddy wrestling with an oversized chicken in the kitchen?"

Smallest urchin "No"

Daddy "Then it isn't Christmas eve yet"

Actually there will be precious little wrestling this year, I have a secret weapon. As the proud owner of a poultry needle and a ball of string - the turkey doesn't stand a chance.

Best weekend wishes to all - Robin x

Robin

My daughter has been on Keppra for the last 10 months. She seems to have coped well with them and not had any side effects so far. It's quite a new drug (developed by one of the Seizure consultants that my daughter sees). Don't know what dosage you're on, but I do know that they can take it quite high. My daughter has just gone up to 1g  2X a day, and we have been told that this is still a very low dose.

Take care.

PEABS XXXX

Hello everyone, I am looking for some advice please. My husband seems to be deteriorating very quickly now and this morning he ended up on the floor. He is twice my weight and I am really struggling to help him get around. We have a nurse from the local hospice who checks in from time to time and she happened to mention on Monday that should he fall, under no circumstances was I to try to pick him up, but to call an ambulance. I did that this morning, but I can't keep getting them to come out just to pick him up. If I can't manage that, then how on earth will I cope with everything else that is ahead of us.

Unlike your husband Y & Y, my husband does not understand what is going on, so he's not depressed or upset about the situation. He is starting to wander around the house in the evening, turning on lights, cooking food, turning on the heat pump. I am having to watch him like a hawk, but last night I was so exhausted I did not hear him wake. He decided to take a shower at 2.30am and once he got into bed I finally fell asleep and didn't realise he had got up again and started cooking everything he could lay his hands on from the fridge.

I must have looked dreadful this morning because the ambulance officer asked if I would like them to take him to hospital so I could have a bit of a break, but G hates that place and I really couldn't do that to him.

I've wandered off track a bit here, I originally posted to ask how others cope with getting their partners around and if there are any tricks I should know about.

Many thanks in advance. XXXXX

Evening or is morning???

Peabs, thanks for asking - nothing straight forward in our world hey?  Hope all is well with you and yours - dreadful statistics and quite unbelieveable how BT's can still be swept under the carpet - hopefully through people like yourself things will (slowly sadly) change x

Daisie - sorry things are so bad and I don't think there will be any easy answers.  Although I can understand why the hospice nurse says not to pick your husband up (makes it sound easy put like that!) I also understand your point of view - my husband has phases of falling from time to time - he is paralysed down his left side so getting him up is difficult, but we manage - I'm not sure if I'd like the thought he is laying on the floor for the length of time it takes an ambulance to get to us and once he has gathered himself he is so determined to get up anyway - but it's very hard and very upsetting.  When Peter was in rehab they showed us how to get him off the floor - if he landed in a tight corner, for instance, get a blanket under him and drag him out to where we could assist.  Other than that it was a matter of putting his limbs in the right place and getting him to help get himself up - this can take some time - is your husband able to assist in getting himself up?  Obviously there is the weight/size ratio to take into consideration too - if he is far larger than you then you must think about your own health. 

As for the break, hospital isn't the place - I presume you are in contact with the hospice since you spoke about the hospice nurse - ring her and ask about day hospice - my husband goes every Monday - it isn't the highlight of his life but it gives him space from me and vice versa - he also gets well fed and watered!  He sits and relaxes and the nurses care for him, they are very kind.  But as I post my husband has gone into the hospice for them to sort his medications out and observe him, they have put him on antibiotics and have instructed a chest x-ray, it also will give me time (they say) to re-charge my batteries.  So don't dismiss the hospice but start by asking questions of the nurse - also don't you have a Macmillan nurse, again ask the hospice nurse as they aren't the same at all. 

The sleeping problems - my husband too has phases of night-time wandering although he doesn't do the cooking (one handed is difficult anyway!) - he wanders checking the lights are on or off, the doors and windows are locked etc - but I was exhausted so the docs put him on clonazepam which is a drug used for seizures but also neuro pain and as a sleeping tablet - which works so maybe speak with your GP and see what he says?

 I hope this may prove even a little helpful, but they are only from our personal experiences, take care x

Greyhound, lovely to hear from you - I hope David continues to improve, I know that subsequent surgeries seem to take a lot longer to recover from.  P had two this year, one 3 hrs and one 5 hrs on his forehead where they performed the craniotomy (neither op on the tumour but to damage and complications from the orginal op) and each one took longer than the previous to recover from - I presume you must have a check up looming?  In any case I hope you see improvement very soon xx