We Talk Brain Tumours

Mandy, it's quite astonishing what  you have been going through - and still managing to support here. Hope everything goes well.  xx

Ann, good to read how well your husband is doing. And especially encouraging for everyone who cannot take tmz.

The good weather here has lured me out into the garden so aching limbs now - typical of the first days of spring weather. Wish I had more to show for though than a few potted up violas!

Jill in Canada, are you still reading? Would be nice to hear from you if you are around. I miss seeing that nice flag waving in the drinks compartment! xx

CHxx

Hi Maggie

Just seen one of your posts on Parents with...... and I have just re-read the leaflet that goes with the Lomustine tablet (which our Oncologist said was the 'nasty' tablet) and it says that one of the side effects is mild neurologic symptoms - ie apathy, disorientation, confusion and stuttering.

Since Steve has been on all of the medication, I am convinced that they cause him most of the problems ie speech, confusion, imbalance etc.

We started chemo yesterday and today Steve has what I call 'chemo eyes' -  looks very tired although had alot of sleep, eyes blurry and can't see very well.

When Steve couldn't put two words together when we started chemo last time, our GP said that the treatment can cause swelling and this puts more pressure on the brain which could cause the speech problems.

At the time, you think that this is how it is going to be but gradually, his speech came back - always seems to be a long process after a set back.

I can see from you postings that it is very scary for you as it is your daughter that this is happening to.

You have said that Sam isn't on steroids at the moment - Steve takes Dexemethesone and again a side effect is difficulty thinking, being confused and loss of memory (all must affect speech).

Steve is on Keppra for epilepsy - increased to 500mg twice a day in Nov 2009 - we found that by giving him 500mg at 7am and then 250mg at about 4pm and then 250mg at 7pm helps him throughout the day and touch wood no face twitching or full fitting since January.

It helps to talk - just letting you know that I am thinking of you and my thoughts are with you and your family.

take care

Ann x

Mandy- so soon for you to be ' fighting' again but I know you  will. Look for the positive to come out of Peter's illness and you will see that it is the insight it gave you into NHS, diagnosis, consultants and how to work the system. These are all your strengths you have now to help your lovely daughter. Keep going Mandy you are a very strong lady. Sending you a hug and some strength. x x

Another quickie from me but just wanted to say to Mandy that I was sorry to hear about Katie's illness. So many people said to me last year when I was having such a horrible time that it seemed so unfair that one person should have so much tragedy to deal with at once. I got through it and I know you will too. You have so much courage and, sadly, your experiences with the illness and loss of Peter will help you get through this latest battle. I am keeping everything crossed for you and Katie that it will turn out to be benign and I send you much love.

xx

AnnB, thank you for your kind comment. I have sent you a PM and look forward to getting to know you better.

Hope everyone is as well as can be and enjoying the lovely sunny weekend. Hopefully the sun has been shining across the Channel too, CH. I've done all my household chores today and since there is no Grand Prix on tomorrow, I am taking Paul out for the day. We both love the seaside but unfortunately we are just about as far from the sea as it is possible to get in England so we have a longish drive tomorrow, think we are off to Skeggy for the day!

Love to all.

xxxx

Hi everyone. im new(ish) here. been on teh site for about  a month now but still finding my way around.

My dad has a brain stem glioma which is probably linked to his neurofibromatosis 1 (nf1) and all i know about it really is they cant operate or biopsy cuz its too dangerous. Its either a grade 2 or 4 which seems a varied guess to me. Dad had radiotherapy that finished in march and that angered the tumor and made it grow.

Dads wife has been told to stay with him all times due to dizziness and depression that he now suffers with too, so she now has to leave her job of 10 years.

I live over 200 miles away  from my dad and im 26 with 4 kiddies (my youngest 4 mths) and a wonderful hubby. Dad is only 53 which is no age really.

Anyone here with a brain stem glioma and nf1? or even heard of the progosis of such a situation?

Im very scared and very confused right now. so much is happeneing in such a short space of time and im scared of losing my dad, the one person who i have always needed.

Sorry everyone, it sounds like im rambling now, so thanks and will be great to get to know you all.

Hi Fiona,

I have also read your message on another thread and they all gave you great advice to post here. Unfortunately I do not have experience of Dad's type of tumour, but do agree with you that is quite a varied guess re the grading, grade 2 is low and non aggressive whereas  4 is the most aggressive. Let's hope that it is the former.  It may help if you read a few of our profiles which will give you an idea of the varied situations on the thread.  Regarding the tumour's growth after radiotherapy, we were told that the tumour does swell after R/T before it settles down and hopefully commences it's shrinkage. I promise that you will get the help, advice and support that you need to help along Dad's journey. Please stay with us as I'm sure someone with the knowledge and experience to help you will be along before long.

The very best wishes to you and your family. Martyn

Thanks Sue for your support.  I remember how awful last year was for you and I did wonder about you during that time - I remember too that you still made us laugh when you recalled scattering the ashes - or sprinkling them down trouser legs - I retell that tale to friends sometimes!  On one hand I can't wait for the confirmed diagnosis but then on the other, well... 

FJC - I'm sorry to read your post.  A BT diagnosis is never straightforward and everyone seems to be so unique - when you are being told such conflicting information it must even more confusing and living such a distance away obviously isn't easy.  I also can't comment on your dad's specific type of tumour but Martyn's suggestion of reading our profiles will hopefully help you to know there may be cause for optimism, that the surgeons don't know all the answers so we have to have hope and keep strong  for as long as we have them with us.  I know this won't help you but you see often a confirmed diagnosis (though this is how we often cope - with facts and figures) doesn't actually help with the journey you find yourself on.  You will find that being there for your dad, whenever you can, will become far more important, the knowledge that you care, love and support him will mean the world. Keep posting and stay with us - just being able to chat with people who do understand your confusion does help I assure you.  Take care x

Hi to CH - I am rather confused, are you still Miggins or have you returned to CH? xx Hi Martyn, hope Doreen is well x

Take care everyone xx

Hi,

Another newbie on this site, my husband was diagnosed with  gd 2 ( but nobody will be definate with the grading) astrocytoma left frontal, following misdiagnosis of Migraine at the start of Fed this year. Post op, and 4 days into 6 week RT plan.

Friends and family have been brilliant, but as everbody elses lives move on through the months, we both still feel pretty stationay with appointments and trying to get siezures under control etc. A colleague suggested a support group, but  this doesn't fit around trying to  work and mantain normality with running my Guide group and walking the collie cross pupster- so i found WTBT!

Feeling pretty good this weekend, sunshine is lovely  isn't it. Hope it has brigthened some of you moods too

Jen

Hi Mandy, Some days I don't know who I am! Answers on a postcard please to: Crazy Miggins or, on a bad hair day, Horse. Holland! xx

Hi Jen, and welcome, lots of support here - as you have probably seen.
Yes it's a diagnosis that stops you in your tracks doesn't it?
Determining grades is a tricky business as some tumours harbour cells of different grades but the treatments can be quite similar.
Is your DH also having chemotherapy? Rt we found has increasing effects over the course of treatment - and can go on for a while afterwards. It's a powerful treatment and goes on working long after the sessions are complete.

Keep on talking. Many of people who write here have people with astrocytomas of various grades.
Great dog you have there, same type to mine. Demanding but lovely.

Best wishes to all reading.
xx

Good morning all,

Mandy thank you for asking of Doreen, much appreciated. She is reasonably stable at the moment and we are hoping the pc is visiting later today.

Hi Jen, glad you've found us. This is the place to be for the help and support to aid you both on the road ahead and hopefully many of the potholes will have been levelled off by the time you reach them! My wife has a grade 3 astrocytoma in her left temporal and her initial prognosis was around 2 years, that was in January 2003.  Any questions please fire away, someone on here will most probably have the answer.

Best wishes to you both.  Martyn.