We Talk Brain Tumours

Hi everyone!   I'm new here.... thanks to Robin for pointing me in this direction! 

Having recently been diagnosed with a brain stem glioma... I'm searching for information.  It's hard for it to sink in when you're not sure what it means!    To be told that no-one can tell you how long you might survive for....and to research that statistics show you'd be one of the lucky 37% to still be around in a year...is hard to take on board.  I'm not even sure about beginning 'treatment'.... it does seem to lower quality of life for many and come with so many side effects and complications.  If I have little time left I want to enjoy it with my boy!   I'm 30 and live with my son in our rented home....I don't have much to leave to anyone...I don't have life insurance....and I'm not sure who would be best to look after my son if I have to leave him...he has only seen his dad twice a year for the last 5 years.  It just makes me determined not to leave him yet!

I've begun a much healthier diet after reading on the internet.  Cutting out refined foods that increase inflammation allowing tumours to grow.  I've started eating only wholegrains...brown pasta/rice/bread...no more added sugar to anything...more blueberries, brocolli, cooking with olive oil, onions, garlic, turmeric (an excellent anti-inflammatory) making my own teas with  ginger and unwaxed lemon....apparently the skin of oranges/lemons contains lots of goodness.  I've ordered my own shitake mushroom logs so that I can cultivate my own!  I've also started taking a daily dose of manuka honey...it apparently has great anti-viral properties, and I've learned that there are usually certain viruses associated with different types of tumours. At least I know that I'm doing what I can to help my body to heal...and I have no awful side-effects.  Apart from regular morning headaches, I'm feeling OK.  I don't think I'm struggling to find the right words yet, at least not any more than is ordinary for me!  I'm really enjoying getting out for a walk in the sunshine and absorbing every sensation along the way. 

I just wondered as well as conventional treatment, do most patients with brain tumours change their diets too, or just rely on the doctors knowing best?  I've never been very confident in Western medicine...to treat the body by 'attacking' it doesn't sound good to me.  I have very mixed feelings at the moment about whether I should accept radiotherapy/chemotherapy at all. 

I'd appreciate the thoughts of anyone who has experienced a similar situation.

Love to all   XXX

Hi Thyme,  I'm pleased you followed Robin's suggestion as there is a wealth of information and support on this thread.  Unfortunately I have no knowledge or experience of your type of tumour so I will not begin to comment about conditions or situations relating.  Regarding diets, my wife has not changed hers dramatically, but we did eat healthily before diagnosis. She does take more cheese, yoghurts, milk etc to help with her osteoporosis, but I believe most importantly she has increased her water intake.  The brain, body is approximately 75% water and in my opinion benefits from regular refuelling.  Also to rest whenever the body tells you is also beneficial.  Regarding your concerns about invasive treatment, I can only speak from our own experience. Doreen was diagnosed with a grade 3 astrocytoma in January 2003 and we were advised that with radiotherapy her prognosis was approximately 2 years, she had the full course of R/T during March/April that year. She had an MRI scan towards the end of last year and the tumour has still not progressed since the course of R/T.  What the situation would be if she had not had the recommended treatment? I don't know, does anyone?  She has not had chemotherapy, that is in reserve if ever necessary or appropriate.  She has many side affects from the tumour and maybe from the R/T, but in hindsight I don't think we would have embarked on a different course of action.  That of course is purely personal to Doreen's situation.

If determination wins the day, then you appear to be a street ahead already.

The very best to you. Martyn XXXX

Such amazing news.  I agree with the others - it is nice to see some postive news for a change.

All the best xxxx

Hi Thyme

I am sorry to hear that you have had to join our community and this is the place to get alot of help and support from a great bunch of people.

As Martyn said, I am not familiar with your type of BT as ours is a GBM IV which means it is an aggressive/quick growing tumour.

With regards to the statistics, unfortunately the Doctors have to tell us the worst because in most circumstances this is what has happened to most people.

In June 2009 we were told that without treatment my husband had 3-6 months and he may not see Christmas but with treatment 12-18 months - devastating to hear.  You can imgine the worry.

My husband opted for treatment, Radiotherapy with chemo then chemo on its own (tablet form).

In our experience radiotherapy is only given once with a maximum of 30 sessions over a six week period as the brain cannot take anymore radiation.

My husband's tumour has caused him mobility problems due to its location so getting out for us since November has been extremely difficult and the thought of going on holiday is not existent.

However, alot of other people manage to go back to work and carry on as normal - even with treatment.

It is difficult to say what would have happened if no treatment was taken and yes, treatment has caused my husband problems and does affect quality of life.  We try to strike a happy medium and keep him well at all times.

Like you, you do feel should you just have gone with it to see what happened and would quality of life be better even if only for a short space of time, but once on treatment it is difficult to stop and there are still lots of difficult decision to be made.

I feel that by changing your diet as you have can only be a good thing as I would also do all that I could to help heal my body naturally.

My advice to you would to be to talk to as many professional as you can - the Oncologist, a Macmillan Nurse and your GP if they are well informed on BT's (some GPs aren't).

I am sure that with getting as much advice as you can, you will then make the decision that is right for you and your son.

Be positive/determined to beat it because I do feel that frame of mind helps and that is why my husband is still fighting it today and there are survivors.

If you look back on the posts you will see I posted a thread in the past couple of days saying there is something happening in our household!

Also, take a look at a forum headed there is hope

Hope this helps a bit

Take care

Ann x

Hi Thyme

Just as I sent you a reply there is a programme on Sky Three (freeview) called Brain Doctors.

I have seen the programme before and todays programme is about a young woman called Stephanie who was diagnosed with a brain stem BT after the birth of her 2nd child (although she had had it for a while un-diagnosed).

Her symptoms first appeared at the birth of her 1st child but was not investigated.

She is under the Frenchay Hospital in Bristol - Neurosurgeon David Porter.

Maybe worth watching if it comes on again or you maybe able to watch it over the internet.

Also, a hospital to be referred to for a 2nd opinion.

Take Care

Ann x

Hi - I'm new to all of this please can you explain what the WTBT is all about?

Hi Catherine,  It does what it says on the tin,  We Talk Brain Tumours.

There are no specifications or format. We are all here to help, support, offer any advice from our own personal experiences and gathered information to each other. Many friendships have developed from here. May I suggest that you have a read back through the posts, check a few of our profiles and see if we can be of any help to you and your Mum.

Best wishes, Martyn.

Hello Thyme - once again sorry you have had to find yourself here, but welcome!

The Sky3 Brain Doctors tumour is about a meningioma and is benign - my husband had this on his brain stem and I have watched this programme a couple of times - so I know that this will not relate to your particular tumour. 

I don't know much about your tumour other than I think it would be best as advised above to consult with some professionals who can talk as openly and candidly as you would like.  I think it wise to seek answers to your many questions especially as you have your lovely son. You have to consider that if you decide to have treatment then you may well need assistance with his care as there may be days when you aren't well enough to consider anyone but yourself.  You also may need assistance for yourself.  Then if you decide not to have treatment you have more decisions to make on behalf of the pair of you.  None of this is easy I know but I think most of us agree that preparation for what may lie ahead is a better way to cope (that sounds as if I mean it is easy - it certainly isn't!).

My husband's BT, as I say, was on his brainstem.  We choose a massive debaulk - chemo and radio weren't an option - things didn't go well and we often wondered if we should have jumped in.  This is why you need to have the honest answers to your questions - we didn't ask the right questions because we didn't understand the consequences of what they were telling us - they glossed over the complications.  I'm not saying we wouldn't have opted for the operation, just that I wish we were better informed at the time.

You sound a wonderfully spirited person who has already done so much research.  I think it would be difficult for any of us on here to try and advise on treatment as it is very individual and quite personal really.  But we are here to support whatever decision you decide upon and we can relate well to your emotions and practical issues.  The answers to your questions are also very difficult for the same reason, that everyone is unique.  All they were able to tell us is that Peter may die today, tomorrow, next year or in five years so I do understand your need for more clarity.  However, I admire your courage and determination you seem quite an amazing person - take care x

Hi Thyme

Sorry you have the need to be here & sorry too that I have no direct knowledge of your specific tumour ( my husband has a grade 4 gloiblastoma). You seem a very strong determined lady with a positive attitude which is good but one thing I would advise you to do is to get your affairs in order for the sake of your young son. I know from experience that this is easier said than done as the BT diagnosis hits you for six. I literally spent months & months staring at mounds of paperwork (most of it is still there!) & have only just sorted out our wills & only then because my very best friend nagged me to do at least that as she rightly said it would be even more difficult  for me if Pete died without having made a will. I know I left it far too long as although Pete & I discussed his wishes when he was not so badly affected by his BT when I finally had the will prepared it was exceptionally difficult for him to concentrate on signing it in front of the necessary witnesses. They know Pete very well & understood the situation but I felt like I was putting him under pressure & I feel guilty that I did not arrange it sooner.  I think the most diificult aspect of making a will is making suitable arrangements for the care of your children if they are under 18 but hopefully you have someone close who can take on this important role should the need arise & I certainly hope that it is never needed in your case.

Sorry if my advice seems insensitive, it is not meant to be. I just think that while you can more easily think about such things it is best to sort practical things out & then you can put all your energy into fighting the BT & enjoying time with your precious boy.Take care 

Quick update on our situation. Pete now having more bad days than good. He is sleeping more & more throughout the day & has been having problems with swallowing. He has bad hallucinations (snakes which always were his phobia in the house attacking him & occasionally lions) but the thing I struggle to cope with most is the fact that he believes he is not in our house at all.He constantly asks me to take him home & he beleives that I am moving him to all sorts of different parts of the country & I am keeping him in the dark about his exact wherabouts. He gets very cross with me & as it is so real for him I don't know how to handle it as whatever I say is bound to make him more agitated & upset.  He was fitted with a syringe driver last week as his condition had deteriorated & as he was unable to take his dex .They increased his dose to 12mg for a 5 day period to see if it boosted him up & during that time he was even more confused but I know that the steroids can do that. He's gone back down to his usual 8mg but the hallucinations are still there & he's sleeping a lot more now again. Hospice at home have now started to come in 3 days per week so that I can have a break at night (have been sleeping on the sofa since November) but I don't really sleep yet in my bed. They have suggested that Pete has a stay in the hospice so that the Drs there can review his medication & also give me a break. Will be discussing this more next wk unless we have a crisis in the meantime. My girls are still coping reasonably well but it was a shock for Hannah when she came home from Uni over the easter break to see how quickly her Dad had gone into decline.  We did manage to have a frank talk about things when I took her back to Uni but oh how I wish it wasn't necessary to do these things.

 I've said it before but i will say it again I Hate,Hate,HATE Brain Tumours and what they do to families.

Take care everyone, I think of you all often even though I don't get much chance to post.

Love Sue xxxx

Sue 

Hi Sue - your post has touched some very raw parts of me and brought back so much.  I feel so much for you and your family - you have shown such strength and determination yourself throughout Pete's illness.  Thinking of you x  (Your advice about making a Will is spot on by the way - something I am glad Peter and I did prior to his operation).

Hi to everyone else, we are seeing the consultant next week about my daughter's tumour as they have decided upon a treatment plan - they rang last week because they appreciate what we have already gone through so told us that they strongly believe it is benign - yet to be confirmed - but that no matter what it still requires treatment - that feeling of anticipation never seems to go away hey?  But thanks to so many of you who, as always, find the time and space to show your support, it is appreciated xx