Brain Tumour Survivor

A site dedicated to leading edge treatment for brain tumours
It is currently Fri Sep 22, 2017 12:51 pm

All times are UTC + 10 hours




Post new topic Reply to topic  [ 73 posts ]  Go to page 1, 2, 3, 4, 5  Next
Author Message
 Post subject: Astrocytoma
PostPosted: Mon Dec 29, 2008 9:05 pm 
Offline
Registered User

Joined: Mon Dec 22, 2008 6:07 pm
Posts: 42
Location: Melbourne
I am writing this in the hope that someone out there can give me a little bit of hope and information. My 36 yo husband was first diagnosed with a grade 1 astrocytoma in Nov 2003. He had surgery a week later and since then has been 100% fit and healthy until his last mri in Nov 2008 which showed that there is some regrowth. The neurosurgeon does not think that the tumour has become more aggressive (ie thinks it is still a grade 1) but we are now back to having 6mthly mri's again.

The neurosurgeon has told both of us that Justins life span is 5-10 years and that within that time he will need further surgery and radiation therapy. He said that they don't give chemo to adult pts with brain tumours as it doesn't work. I am deeply concerned for not only myself (selfishly!) but also because we have 2 beautiful children ages 1 & 3 and more than anything I want my husband around to see them grow up.

Am just wondering if anybody has any information on any other treatment options that we may have overlooked. I am led to believe that we have one of the very best neurosurgeons available to us in Victoria (Australia) however I would appreciate any input you guys can provide.

On another note I thankyou all very much for sharing your stories as they have given me courage, hope and the belief that you can be a survivor.


Top
 Profile  
 
 Post subject:
PostPosted: Wed Dec 31, 2008 2:56 pm 
Offline
Registered User
User avatar

Joined: Mon Mar 10, 2008 4:03 pm
Posts: 18130
Location: Australia
Thanks for sharing your story.

The first thing that you need to do is get a second opinion. A neurosurgeon's advice on chemo is of limited use. Try to see a neuro oncologist, however chemo still may not be recommended if there is a pathology report confirming the low grade.

Chemotherapy works fastest on higher grade tumors, which is both good and bad. The gold star chemo treatment for brain tumors is temodal, but it is better to have confirmed the loss of heterogosity (1P & 19Q gene deletions). Also check whether his regrowth qualifies as anaplastic as this has a big difference in the cost (around $3000 per month).

His age and lack of symptoms are good signs, as well as the low grade. Having been on temodal and had surgery, we are now on the same train going from scan to scan. Initially it is scary, but I am accepting that there are no standard treatments available to us.

There is a great article that I highly recommend as a treatment overview -http://www.virtualtrials.com/williams.cfm. Basically we are down to natural alternatives.

Firstly, avoid pesticides, electromagnetic fields and mobile phones. Secondly, avoid stress and engage in passive meditation and/or nanny naps. Include supplements such as melatonin, PSK, berries & tart cherries (see Williams article).

You also need to familiarize yourself with the word metronomic, regular small doses of chemo or radiotherapy; if he goes back on to standard treatments. These are proving more effective with less side effects.

Let me know if he is willing to be involved in an unofficial trial for patients not receiving standard treatments. My intuition is that the bodybuilding lifestyle and diet is suited to our disease. Happy to share my knowledge and form a team approach, with the added bonus of goals included. If we get enough numbers, we may be able to use science to show any effect. I am already doing it myself, happy to have others join me :-).


Top
 Profile  
 
 Post subject:
PostPosted: Sat Jan 10, 2009 8:55 pm 
Offline
Registered User

Joined: Fri Aug 22, 2008 11:09 am
Posts: 47
Hi Alley,

So sorry to hear about your husband. Before you do anything else my advice to you is seek another opinion, in particular Charlie Teo in Sydney. My nephew has just been treated by him for a so-called inoperable brainstem astrocytoma grade 1 and was given 6 - 18 months to live by several well respected specialists. Charlie removed the lot and little Daniel is expected to make a full recovery. He will have partial face paralysis and perhaps hearing deficit in one ear (but that is coming back which is better than expected) but these were a consequence of where the tumour was growing. Charlie's team will look at your latest MRI and any other reports you may have for free (you can email them if you wish) then will let you know if it "worth your while" to come to Sydney. If they say it is my advice is to go. I could not speak more highly of him. If you search for his name on this site you will read many stories of former and current patients many of whom were more or less told to go home and die. Charlie was able to either cure them or prolong their life and give better quality of life. If they are saying 5 -10 years then it is extremely slow growing but nevertheless the earlier it is dealt with the less long term effects the tumour can have. Don't be afraid to contact Charlie. He is the best. His details can be found on

http://www.neuroendoscopy.info/

My very best wishes to you and your family.

PS if radio is offered to you and you are thinking to see Charlie I would see him before radio. In little Daniel's case radio would have meant Charlie could not have operated - makes everything stick together apparently. Even if he has already had some I would still try to get Charlie's office to look at his results. Good luck and I will cross my fingers for you. Just remember miracles do happen, sometimes we just need to give them a little push and doctors don't know everything. If they tell you something you don't like find another and keep going until you find the right answer. That's what we did with Daniel.

Kind Regards,

Sue


Top
 Profile  
 
 Post subject: astrocytoma
PostPosted: Mon Jan 12, 2009 5:58 pm 
Offline
Registered User

Joined: Mon Dec 22, 2008 6:07 pm
Posts: 42
Location: Melbourne
Thank you both so very much for your advice. I have already organised a second opinion however I will now cancel that and send his medical info to Charlie Teoh as suggested.

Sorry about the lateness in my reply but we have just returned from a spur of the moment holiday!

I am so very glad that my girlfriend alerted me to this website as it has provided me with a lot of information as well as support as I was feeling very alone.

Will keep you updated on our battle.
Alley


Top
 Profile  
 
 Post subject:
PostPosted: Mon Jan 12, 2009 7:44 pm 
Offline
Registered User

Joined: Fri Aug 22, 2008 11:09 am
Posts: 47
Hi Alley,

Glad we could help. Like you I stumbled on this site but it proved invaluable. Danny's Mum was reluctant to trust Charlie and proceed with the operation as it was against mainstream opinion but this site offered contact with several of his former and current patients who were able to give advise based on their own experiences and ease her concerns. Not one had anything negative to say about him. All were full of praise. Personally I found him a bit funny but I must admit he knows his stuff and he won't say he can do anything he can't. I truely would trust him with my life. He is an absolute gift. We went from a 4 hour op up here in Newcastle that turned into only a biopsy to total tumour removal in virtually the same time. That is the skill of the man. Also there is a heap of difference between run of the mill neurosurgeons who may have only seen a few of these tumours to someone like Charlie who sees them all the time. We could not get over how accurate he was with his diagnosis and recommendations. He just knows what he is looking at. That is not to say anything bad about any other neurosurgeon, just that when that is basically all you do then you can expect him to be good at it...and he is! And the trickier it is the more he loves it. Also he has performed over 5000 operations on brain tumours alone with no deaths on the table. Only one patient that we know of has come out and not woken up and one little girl died a couple of weeks after the op but in reality that is a very small percentage when you look at it. I am so glad you are doing what you are doing. Just hope it is good news when you see him. When we went to see him you could have blown us away with a feather when he said he could operate and get at least 95% of the tumour. In fact he removed 100%!!!!

You may also find that some in the medical fraternity will try to dissuade you from seeing him or proceeding with treatment. There is a lot of ill feeling between him and a lot of other neurosurgeons and doctors in general. Just stick to your guns and demand his MRI's etc. I personally believe that hopes costs nothing and where there is life there is hope. I also know if it was my husband like you I would do whatever it takes to find the answer and I hope and pray that that answer lies with Charlie. It did for us and I hope it does for you too. Let us all know how you get on. Good luck!!

Sue


Top
 Profile  
 
 Post subject: Feeling low
PostPosted: Fri Jan 16, 2009 8:13 pm 
Offline
Registered User

Joined: Mon Dec 22, 2008 6:07 pm
Posts: 42
Location: Melbourne
Just wanted to ask you guys how do you stop things getting on top of you? Most days I am okay however there are moments when I stop and think and then get this overwhelming feeling of desperation and sadness at the amount of responsibility I am shouldering. I constantly worry about whether Jus will have a seizure (touch wood he hasn't had one to this point) as this will affect his ability to work in his current employment and financially we cannot keep the house without 2 wages. Although I am a nurse and have seen many many people have seizures I worry about watching my husband have one as it is always different when it is someone you love having them.

I just feel so absolutely alone like I am making this journey on my own although I have wonderful supportive caring family and friends. My mother in law often says to me that she is glad Jus has me but I am not sure whether I am strong enough for the journey that lays ahead of me.

I feel so bad saying that and it makes me a very selfish person. Has anybody else ever felt these feelings??

Alley


Top
 Profile  
 
 Post subject:
PostPosted: Fri Jan 16, 2009 11:25 pm 
Offline
Registered User
User avatar

Joined: Mon Mar 10, 2008 4:03 pm
Posts: 18130
Location: Australia
You are not alone! Fortunately, the internet helps us to connect and share our stories.

The good news is that he hasn't had a seizure yet. His MRIs should give an indication of related swelling which may indicate likeliness of seizure. My midline was shifted well over and I was unlucky enough to have one just before my operation.

I take tart cherries are a natural supplement to try to avoid further swelling. Medicines that reduce joint swelling are being investigated for this purpose. Women are less prone to swelling and bleeds, so I have a soy milk shake every morning (a natural source of estrogen). Avoid sugar, alcohol and fizzy drinks - junk or processed foods in general.

Unfortunately, this disease does not allow you to ignore the realities of mortgages, wills and financial planning. You may need to visit a certified financial planner and ask those difficult questions, my wife and I did.

Stress management is important for carers and patients. Stress only creates more problems for both. Vitamin B, light cardio and ME time are also important. Buy your favourite comedian or comedies on DVD.

Find your source of strength. For me it is bodybuilding, which is the antithesis of bad health in its natural forms. Whats your source? When you have found that you have found one of life's secrets.

"You are the sum of the five people you spend the most time around". I have a positive attitude, at least most of the time, and my family/ friends in turn feel more positive and give me more love in return. Its also a source of my goals.


Top
 Profile  
 
 Post subject:
PostPosted: Sat Jan 17, 2009 12:03 am 
Offline
Registered User

Joined: Fri Aug 22, 2008 11:09 am
Posts: 47
Hi Alley,

You should never feel bad about yourself or consider yourself selfish. You are just concerned for your family's welfare. You are so brave facing what you are. Try not to be so hard on yourself. Prior to my nephew being ill with a brain tumour I lost my Mum and my Mum-in-law within a year and had a really tough time. I never thought I would get on top of things but I did. I saw a psychologist and she told me that I was being too hard on myself. I was trying to support everyone else and forgetting about me. This is what I think you are doing. Like me, you are trying to be brave for everyone else and find the answers and care for your husband and children but you are putting yourself last. That is what we Mums do and my advice to you is to just take a little time every so often for yourself. You need to have an escape every once and a while. I know what it is like to walk with a cloud hanging over your head and think that the sun will never shine but it does. You just have to open your eyes and see it. When my nephew became ill I had been through so much that I was determined it was not going to happen again. That determination drove me to find different doctors, different treatments and eventually Charlie Teo. I know that you are experiencing that same drive. You are not alone in all this. I found the people on this site wonderful support and they can provide you with information that would take ages to obtain. They are all going through the same thing in one form or another. As I said to you before "where there is life there is hope" and I really believe that. Try and think positively, take care of yourself, be kind to yourself and just take one step at a time. I know with my nephew we thought that even if Charlie could not cure him he might be able to buy him some time. The world of medicine is developing at a rapid rate and eventually what your husband has will be able to be cured. 5 - 10 years can be a lifetime in medicine.

I tried relaxation and that helped. Just sit for 5 minutes a day in a quiet spot, close your eyes and imagine you are in beautiful place. Just try to block every thing out. The more you try, the better you will feel. Exercise also helps. Just a walk every so often releases endorphins which are the body's "happy pills" and you will be surprised how much better you feel. When you walk try to take a little time out from your worries by practising "mindfulness". This is a technique where you pay particular attention to what is going on around you i.e. concentrate on the way the ground feels under your feet, the wind on your face, the birds in the trees, look at the grass....anything to distract yourself and give your mind a well-earned break.It also helps to find the good in things rather than the bad and accept that some things are out of your control. I realised that life is for living not just waiting around for the inevitable and a positive attitude is everything. I wonder too, how is your husband coping?

You are doing all the right things as far as your husband is concerned and I truely feel the sooner you see Charlie the better. You should feel very proud of yourself, you are dealing with a lot of responsibilty as well as worry but don't try to do it all yourself. You aren't superwoman. Try to accept offers of help once in a while so you (and perhaps Jus) can have a break. Enjoy your time together. I realised that there are no guarantees in life and I could go out tomorrow and get hit by a bus, so I tried not to worry about things that I could not do anything about.

No one would ever accuse you of being selfish, you just love your husband and family. You would have a life for them mapped out in your head and this is not part of the plan- but just think of it as a slight detour, a bump in the road. What you are feeling is normal. We have all been through it. We are often our own worst enemies and we pressure ourselves too much when we are in a situation we have little or no control over. You feel so alone because everyone else seems to be going along normally and you are faced with this all-consuming overwhelming situation with no one to tell you what is the right thing to do.

Hope costs nothing but brings so much to your life. Try not to lose hope. Teo may very well be the answer and look forward to that. There are a few more aces to be played yet. Be proud of yourself. I know Jus would be.

Hope all this rambling helps in some way. Just wanted you to know we have all been there. It is just hopelessness in a situation you can't control not selfishness you feel. Positive thinking works wonders. Keep up the good work, things will get better.

Thinking of you,

Sue


Top
 Profile  
 
 Post subject:
PostPosted: Thu Jan 22, 2009 4:39 pm 
Offline
Registered User

Joined: Mon Dec 22, 2008 6:07 pm
Posts: 42
Location: Melbourne
Hi guys, once again thankyou so very much for just being there and offering some great and much needed advice. I have started running again and have recommenced at the gym. I have encouraged Just to do the same. I am also spending loads more quality time with the kids which at times can be somewhat challenging but a lot of fun.

It is so nice to know that there are people that so understand my ramblings and are not judgemental and offer sound advice rather than well meaning platitudes!

Ken as you suggested I am off to see a financial planner on Wednesday and am really keen to get things into place. I am also looking at upping my life insurance as if god forbid something happens to me as well I need to know that the kids will have some money for schooling etc.

I have to say that I am now much less tolerant of stupid people and have realised when something like this happens you work out pretty darn quickly who your true friends are.

Am organising the stuff to send to Charlie Teo and we have our mri booked in for 1st May.

We are making every day count!

Thankyou once again you truly have no idea how much your words have meant to me and what a positive impact they have had on my life.

Alley


Top
 Profile  
 
 Post subject:
PostPosted: Thu Jan 22, 2009 7:41 pm 
Offline
Registered User
User avatar

Joined: Mon Mar 10, 2008 4:03 pm
Posts: 18130
Location: Australia
Well done! Doesn't it feel good to be taking control and making decisions again. Its also very therapeutic.

I know exactly what you mean by finding out who your true friends are. Don't be afraid to share the load or ask for help, its good to have a strong team around you :).

Its amazing the difference that it can make when you are in control - emotionally and medically. A bit like parenting really :D.


Top
 Profile  
 
 Post subject:
PostPosted: Thu Jan 22, 2009 8:03 pm 
Offline
Registered User

Joined: Fri Aug 22, 2008 11:09 am
Posts: 47
Hi Alley,

I am so thrilled for you. You are really taking some amazing steps. You could have easily slumped into self-pity but you know, you must be made of tough stuff. Enjoy your kids, enjoy your husband, keep trying to believe you will find an answer to all this and you just might. I did, so it can be done.

The running and the gym is exactly what you need and as for Jus , it will only strengthen him for what lies ahead. Plus it's something you can do together (bonus!!). It must feel great to be able to take some control in all of this!!!

We understand you because we too have been there. Unless you have experienced the depths of despair you really can't relate. But I will tell you things do get better, you become a whole lot wiser and you realise what is most important in your life and for you that is right in front of your eyes....your kids and Jus. Try not to be too hard on your friends...they probably just don't know what to say. Feeling helpless can be a lonely place too. I always try to give people the benefit of the doubt but would suggest that you don't lose any sleep over people who can't be counted on.

Stay in touch and let us know how things go. And if you ever need a good listener.....well, you know the rest.

Keep safe and stay happy. Life is for living!!!

Kind Regards,

Sue


Top
 Profile  
 
 Post subject:
PostPosted: Fri Jan 30, 2009 8:11 pm 
Offline
Registered User

Joined: Mon Dec 22, 2008 6:07 pm
Posts: 42
Location: Melbourne
An update!

Jus and I went and saw a neurooncologist today and I have to say that he was absolutely wonderful. He was a little puzzled about why we were waiting 6 months for an mri! The upshot of the visit is that Jus is now having another MRI in coming weeks, he is also to have a pet scan and we have an appointment with a radiation specialist and another neurosurgeon who will review his scans as well. He also talked to us about medications on the market that are working on stopping the dna in the tumour from proliferating which is great in theory but is pretty much out of our reach at this stage as it will cost $4000/month!!!! Why is treatment so expensive?? It is so frustrating knowing that there is this wonderful medication that can stop the tumour in it's tracks but we are unable to afford it unless we win tattslotto!!!!

He also said that he has seen many people live long lives with astrocytomas although they have had to have treatments along the way as they do reoccur which is so much more positive than our last doctors visit!

WE are feeling a little better about the whole situation but frankly as everyones know you would rather be without it!!!!! Once we have all this infomation we will revist him and decide how we are going to tackle this reoccurence based on all the test results. I must say that I am glad that we are getting an earlier MRI and also the PET scan.

Thankyou all for listening to me babble on but you all are truly my lifeline and sounding board!!!

Cheers Alley


Top
 Profile  
 
 Post subject:
PostPosted: Sat Jan 31, 2009 11:44 pm 
Offline
Registered User
User avatar

Joined: Mon Mar 10, 2008 4:03 pm
Posts: 18130
Location: Australia
Glad to hear that someone else is looking into different types of imaging.

If its not covered by PBS then you find out the real cost of drugs. We shelled out over $20k on temozolomide. Sometimes either a compassionate scheme or a trial will let you get access.

Sounds like a positive situation with the neuro-oncologist.


Top
 Profile  
 
 Post subject:
PostPosted: Thu Feb 12, 2009 8:43 pm 
Offline
Registered User

Joined: Mon Dec 22, 2008 6:07 pm
Posts: 42
Location: Melbourne
Just a quick update. Jus and I went and saw radiation specialist today and he was great and said at this stage J won't be needing any radiotherapy. He suggested that we would have two courses of actions - 1. wait and see and 2.surgery. I agree but find it hard waiting as I am sure everybody does!

I feel quite guilty that we have gone behind our neurosurgeons back and hooked up with a couple of other doctors. I can't help but think that he will not treat J as well as he has done. Has anybody else felt this way? I am sure that he is professional but wonder if he will get pissed off and think we have no confidence in him.

Anyway we have a pet scan tomorrow and then Mri early MArch so will wait and see what they show. I have to say that I am quite nervous about the pet scan as there is no hiding with that and I can't help but think maybe things are worse than we have been told.

Anyway will let you all know and once again thanks for all the advice and support that you all so freely give it is great .

CHeers Alley


Top
 Profile  
 
 Post subject:
PostPosted: Fri Feb 13, 2009 1:22 am 
Offline
Registered User

Joined: Tue Dec 16, 2008 1:23 pm
Posts: 6
Dear Alley,

Its ok to be nervious about the results.

Last wednesday I went to get my results back and i was told that i had to go back in 4-6 weeks to get the back and to find out if I have to go for surgery.

I know how you are feeling I get it all the time when something comes up.

I am also happy that you are making every thing go to plan.

All the best

Gale


Top
 Profile  
 
Display posts from previous:  Sort by  
Post new topic Reply to topic  [ 73 posts ]  Go to page 1, 2, 3, 4, 5  Next

All times are UTC + 10 hours


Who is online

Users browsing this forum: No registered users and 2 guests


You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
cron
Powered by phpBB® Forum Software © phpBB Group
[ Time : 0.076s | 15 Queries | GZIP : Off ]