We Talk Brain Tumours

Yes you are right Martyn. How do you know if you have a wall? Is it a good thing to have and can you get tablets to help if you haven't got one? On a more serious note has any one managed to stop steroids altogether? My hubby has just finished his 6th cycle of Tmz. He is on Betamethasone(Dexamethasone) and takes 0.5mcgms daily. His onc wants to wean him off and wants him to take 0.5mcgms every other day. He now feels fluey, aching joints and tummy problems, Has any one else successfully weaned off them and did you experience any of the above? x x

Hi Y & Y,

I'm sure there is a smutty response to your question about walls, but my brain is slightly alcohol fueled at the moment.

Doreen eventually came off the steroids successfully. She very gradually reduced by half mg each week and then half every other day for the final week. She had just a few headaches, but was taking 8 paracetamols a day which may have helped.

The very best of luck to him.

MartynXXXX

HI yin and yang, B also has only taken dex for short periods around his operations. The dose was reduced over about a week and a half from 8 - 0 mgs without any real side effects. I think it is really relates to how much fluid accumulates around the tumour and how quickly the body reacts and compensates by producing it's own chemicals. so, like everything with bts, a person's experience is very individual to them.

So where are these walls then? I don't want to lose this message so won't  try to use the Search box. (Though it hasn't found anything else I've tried to search.)

Love,

CHxx   (Exit left pursued by a bear but still mumbling and muttering about the unfriendly Mac site.)

I was put on steroids when Somnulence hit around 6 weeks after radiotherapy.  Started on 6mgs and after 2 weeks came down to 4mg, 2 weeks and 2mgs, 2 weeks down to 1mg and then half and then nowt.  I am on my 4th cycle of Tmz and take 2mgs for 4 days to ward off the headache I have begun to experience on it.  Otherwise I take none and had/have no side-effects, but wasn't really on the steroids for long.

Good luck.

Dear Y and Y

my daughter was weaned off steroids..going down to 0.5mg everyother, every 2 and then every 3 days. She experienced the ache joints and terrible pains in her stomach, which we were told was a sise effect. They did stop very quickly though. Agree with Ch, every one has different experiences as she also had other side effects.

PEABS XX

Good morning all,

I have a friend request by email although there doesn't seem to be any reference to it within this site.

***How does this sound to you???    Hmmm***

***MESSAGE DELETED AFTER ADVICE FROM MARMALADE.***

MartynXXXX

Hi Martyn,

Hope you don't mind me dropping in on your thread, but I saw your post & as it is something quite a few of us have received, I thought I would let you know that Admin wrote about it in their blog yesterday. If this link to the blog doesn't work, click on "Blogs" & it should be on the 2nd page back..

http://community.macmillan.org.uk/blogs/admin/archive/2009/09/29/update-3-date-format-forums-list-and-more.aspx

xx

Hi Everyone

Just a quick pop in.

Suetoy, again I only write to reassure you.  I also took food in for P - but I can't help but wonder why he isn't receiving physio now, on the ward he is on - there is no reason why not and if you haven't already asked I'd be asking - many people get physio there and continue to do so in rehab - P had physio a week after his massive op - he couldn't balance to sit and that was the first thing they worked on and in a couple of days they were teaching him how to transfer using his good left side.  Then within a week or so he was standing - with much assistance from two physio's, then walking the day after, again with much assistance - them moving his leg and holding it into position.  If it's nerve damage then they have to start moving the limbs for the brain to make new pathways to get the messages down there.  If it's due to swelling then maybe that may be slightly different - however they did hope this was the trouble for P so I can see no reason for your P not to be having physio now.  Also my P had a trainee physio come every day to stimulate his paralysed right side with feathers and stroking techniques etc to stimulate nerves - he got P to eventually lift his leg (about a cm but wow what a day that was!!) - so really I'm saying go kick some ass and let tell them you and P want more and why isn't he getting more!

Good to hear Hannah is settling - my daughter number two went down Sunday - she's loving it - except her student loan's not through yet!  I understand your feelings totally, I have been saying recently that the void in my life is getting bigger and the distractions less - makes me think about stuff I don't want to more and more. My daughter number one went to uni the day after her day came out of hospital, she has managed, but I think she was very homesick when I look back - didn't realise it at the time as I was totally consumed with P - just a bit of a warning and hopefully Hannah won't feel like that - I don't think Abbi will this time around.  The one thing that is good for Abbi is the flat she is sharing with 7 others has an uncanny coincidence - it appears that of the 8 sharing 6 of them have 'problems' relating to their dads - died, suicide, brain injury and Abbi's dad with BT - I can only assume that Reading Uni has deliberately put this lot together - it's too much of a coincidence for ALL of them to be together - I feel comforted that Abbi as at least will have people around her this year who will understand better than most should things take a turn for the worst - but how did Reading know about all these kid- can only have been on their school references??   Anyway good luck with the cabin building xxxxx

Hi Marmalade,

Thank you very much for posting the link. I understand now and have deleted the copy email from here just in case.

Best wishes, Martyn.

Hello All

I am trying to do a bit of research (purely for my own use) and thought this would be a good place to start, I hope you dont mind... I shall try to explain.....

I am a qualified, practising reflexologist and for several years before my daughter was diagnosed with her brain tumour she has had veruccae on her big toe.  She was very shy about them and would barely let me look at them let alone treat them.  We have tried almost every over the counter & prescribed treatment for them going over the years but nothing worked!!  In reflexology, the big toe represents the head and therefore the brain and believes that the feet can give signals to warn of imbalances in the body.  Earlier this year, prior to diagnosis my daughter had a cluster of approx 12 -15 verrucae on the one big toe!!  Now, without any treatment (to her toes) they have almost vanished.  Although her tumour is still there I believe the verruca were an expression that all was not well in her head, and now that the fluid build up has been released and the 'problem' has been identified the verruca have done their job and are clearing. 

I understand this may be difficult to swallow for anyone who has not had any experience of reflexology before, or non-believers, but I wondered if anyone else out there with bt's have anything else remarkable about their feet, particularly the big toes.  It may not be verruca, it could be anything.  I would be very interested to hear from you if you have.  You may not want to post on here about it so please feel free to send me a pm.

Martyn - I got a message from you, thank you, but now I cant find it again.  It did mention you checking your "seetings" and when I first read it I thought you were checking if there was room on your train for me, but then realised yu were checking your message settings! haha!!

I look forward to hearing about all of your feet!!!

Lots of love X