Brain Tumour Survivor

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PostPosted: Wed Mar 19, 2008 10:00 am 
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:shock: last Friday my husband (53) had a cat scan and was rushed in to emergency with a large frontal tumour. On Monday a MRI confirmed an invasive malignant tumour. A debaulking was done. It sounds pretty much helpless. I have not even met the neurologist and just hope that he is good. All I know is that a lot is still left, work is over, it has spread but still within the brain. He of handledly mentioned radiation and chemo and see what happens. Tonight I get the whole deal. It's a roller coaster of emotions and I wish I didn't own a phone. I thought well how can you have radiation for something that is all over the place. But can you? Does it help? Can we buy time? He is unaware of his situation and thinks he is okay. He is happy and now pretty much feeling better. The family has decided to leave him ignorant. His new memory is impaired so he is blissfully ignorant.
But with treatment will it come back? He looks great! Is it worth trying for time. I certainly want to but that may be selfish. Tell me all I need to know. Need to do.


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PostPosted: Wed Mar 19, 2008 9:27 pm 
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Location: Brisbane, Australia
Dear Bronwyn
I am sorry about yr Husband's emergency surgery & his current diagnosis. You must be reeling from this shock & it is a huge deal for any family to be going through this. Please know my prayers & thoughts are with you.
As to treatment there are many options available to treat brain tumours. Yr Husband's appears to be in the R frontal lobe & as long as the tumour doesn't cross to other parts of the brain (it is rare for brain tumours to spread through the body) radiotherapy & chemo will be the main treatment offered. Temodal (chemo) is the GOLD STANDARD chemo for brain tumours but there are other chemo drugs used as well. In Australia Temodal is used widely. Radiotherapy can be targeted directly at the tumour & I've read other stories where this has been successful.
The type of brain tumour yr Husband has could be an Astrocytoma or Oligo but these are rarely aggressive & can develop over several years. The long term survival with one of these is good for most. The other brain tumour I'm familiar with & which my Bro currently has is a Gliomblastoma Multiforme Gr 4 or GBMIV. This is the most aggressive & severe kind of tumour to have & long term survival is rare. Sorry to give you this news.
Depending on where you are in Aust (or elsewhere) treatment can vary. My Bro started radiotherapy & Temodal almost straight away last Mar 07. He didn't do too well with radiothrapy & was suffering terrible seizures & losing the movement in his L arm & L leg, (he also has a R frontal lobe tumour which was .5cm at diagnosis). The radiotherapy was ceased after 4.5weeks & he had his 2nd debulking in May 07, this surgery left him with a serious deficit on his L side & he has been in a wheelchair since. He has subsequently had 2 more debulking surgeries, his latest just over a month ago.
I believe my Bro's - Mark - story & treatment outcomes are not the norm (very unlucky) but in saying that the surgery depends on exactly where the tumour is situated in the brain & the tumour type. If it's a GBMIV these tumours mostly grow aggressively. My Bro's grows back within a couple of months of each surgery. In saying that there are members on this forum who are surviving GBM for more than 18mths or longer, if the surgeon is able to remove all of the tumour mass I think the outcomes are better, but with GBMIV's the tumour is not contained within the tumour mass it grows outward with tentacle like legs & surgery is not able to remove these remnants
You really need to sit down with the neurosurgeon & medical team with a list of questions to be answered. Do you have an adult family member or friend who can support you through this? I do hope so. Someone who could be with you when you meet the medical team?
You shouldn't be thinking the worst yet for yr Husband. As I stated earlier there are treatments available & I would be throwing everything at the tumour that I could. Once again I am very sorry you are going through this nightmare!

Questions you might ask
What type of tumour & what Grade of malignancy?
Type of chemo on offer?
Anti seizure medications?
Steroids for brain swelling?
Size of tumour & how much was debulked?
Prognosis for yr Husband?
Will he need any rehab?
When can he come home?
What supplements or natural therapies are recommended? (if they say none then research this yourself, these can be helpful)


I'm sorry to overload you with information but I hope it's helpful. I have been a research 'NUT' since my Bro was diagnosed & this is how I came to this forum. It has been an invaluable resource for me, with loads of support & info along the way.

Keep in touch & let us know how yr Husband is going.
Thinking of you. Angie.


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 Post subject: Me again
PostPosted: Wed Mar 19, 2008 9:28 pm 
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Bronwyn
I forgot to mention that I moved yr original post from the other thread to General Treatment Discussions. In moving yr story here I hope you will receive more support & information.
Cheers, Angie.


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PostPosted: Thu Mar 20, 2008 9:16 am 
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Dear Angie, I just spent 20 minutes typing my little head off and lost it during the preview. I hope it went but tell if not and suppose I will strart over again. Thanks for the advise


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 Post subject: Re: Posting
PostPosted: Thu Mar 20, 2008 9:42 am 
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Hi Bronwyn

I can relate to the problem you have just had with posting. 20 mins is alot of typing to then lose it! It's happened to me on several occasions & is very annoying.

Try "copying & pasting" to WORD as you type, or select PREVIEW regularly & this should keep you "logged in" or try typing yr post firstly in WORD & then "copy & paste" to this thread.

Yr registration will automatically logout after a set amount of time & if yr like me with "alot to say" this is terribly frustrating!!!!

I hope this helps you.

Cheers, Angie.


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PostPosted: Thu Mar 20, 2008 11:59 am 
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Graham, my husband has a GBM grade 4 in the left frontal lobe, right a bit and the ganglia. He has also had a bleed. It has grown so fast that some has died from lack of blood supply. The left bit has been debulked only. We are told 1 yr max. Next step is a transfer to another hospital for the"best" radiologist for this for 4 weeks of treatment. It can be either inpatient or out. I prefer in as we are at least one hour away and all the travel along with the confusion Graham has will be very stressful. The dr says he will simply get more tired and not wake uo one day. I find this hard to believe.
The dr has deemed him incompetent to handle his own affairs. BUT when Graham is told he has a tumour he gets very upset and then forgets it. So each mention is like new news to him. I told them to not tell him anymore. They say they legally have to inform him of all the treaments etc. How stupid.
Changed the health cover April last year so now they are screaming pre existing. More forms. The dr who referred him for the initial Ct scan refuses to fill in the forms. He says the radiologist did the sending of him to hospital and wipes his hands of it. If your GP won't help who the hell will?
Want to claim permenant disability so we can have some money to give him a good last year (or more we hope). His boss says lots of paper work and might as well for death as will be soon and is easier to claim. Helpflul bloke. He turned up on my door 7am and oferred to give money for funeral. Also offered year of pay at reduced rates but need the payout.
Dr says plan something for him in 3 months as last chance for good memories is then. After first treatments. He loves to fly fish so will do that for him. (my punishment) He says only Tasmania or NZ as too far Canada which he dreams to do. BUT I read of people who went to Europe without problems. Is it worth the risk to take him where he wants?
Daughter who is 23, Catherine has gone to pieces and is on mediation. This only makes it worse. Graham notices something wrong with her and he gets worried and upset. He is also suspicous of all the people who visit him. He has developed a time obsessiveness but otherwise really bright healthy looking and happy. Electrolytes are shot and he is upset that he can't drink anything.
Anyway thanks for the tips and onwards we go!


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 Post subject: Re: Travel
PostPosted: Sun Mar 23, 2008 7:42 am 
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Hi Bronwyn
I am so very sorry to hear about Graham's diagnosis of GBMIV. What were his symptoms (if any) leading up to his emergency surgery last week? Graham's tumour is on the opposite side to my Bro's. Mark was a plasterer & started experiencing a heavy feeling in his L leg & L arm. He said it felt like something was pulling on his shorts whilst he was up on scaffolding at work. He ceased work immediately because of the dangers & he was able to claim against his life insurance. I believe it was a "death" benefit claim. Mark's tumour has remained in the R frontal lobe, but as it's on his brainstem is impossible to remove all of it.
Mark's Drs too gave him 12 mths but he has surpassed this. The Drs will only give you percentages & guesses as there is still so much unkown about GBMIV's? Don't believe everything you read or hear.
Have you read Dr Ben Williams story? His story is on this forum under Personal Stories, it is inspirational & very informative.
Sorry to hear Catherine is "doing it tough" with Graham's illness. I hope the medication helps her?
My Bro & his wife travelled to Hawaii last year. It was a huge challenge for them with Mark in a wheelchair, but they managed. As yr Dr recommends I would be planning your fly fishing holiday sooner rather than later.
The sooner Graham starts treatment the better...I will be thinking of you & praying.
Please keep in touch. This is a great place to come & rant, rave & let your feelings out. We will support you in any way we can.
Cheers, Angie.


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 Post subject:
PostPosted: Sun Mar 23, 2008 12:41 pm 
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He simply started complaining of headaches. But around christsmas his body went haywire. Came out in a rash all over him, nose bleeds, vomiting. Treated as a suspect chicken pox. The headaches got worse and everyone said happens with chicken pox at your age. Then getting very tried and more and more vague. I told him to get it checked as I felt I was living with Ozzy Osbourne with out the benefit of his money. I made him go to the emergency clininc as I felt his Dr was doing notihng. He told him everyone gets headaches. Emergency clininc sent him straight to the cat scan and then an ambulance. In retrospect it all makes sense. I remember yelling at him to do something about his headaches as knowing his luck he would probably have a brain tumour. Lucky for me he doesn't remember that.
Now he is very vague and has trouble taking in any imformation. As it is Easter he has been given lots of eggs and he is like a child eating them all. This is new as he was never a chocholate eater. He is somewhat child like and very happy and laughs at silly things. You can't be sad around him as he is quite jolly. I bought him new pajamas. silly ones. I also bought him some really silly slippers thinking he would look at them and say no way. Well that was the initial reaction but I said try them on. He did and when the nurse saw them she remarked on marvellous are those slippers and he beamed. They live on him now. He loves them pink bows and all. Now Catherine is upset with me for making him look silly.
So sometimes I have Graham and other times the 9 year old version and can alter withing 3 minutes. When he gets stressed he starts to twist his hands and retracts to his childhood.
Now for the nitty gritty. How long did the payout take? Did you have any problems from the insurance company? What did it require? He has strarted down the drug path. He is on Dilantin, Dexanthosane, Ranitidine, Norvasc, Maxalon, GTN patch, Endone. I do not know what Maxalon, Endone and GTN patch is? I am also going to ask for any test results from the hospital. Will I expect any hazzle?


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 Post subject: Re: Drugs
PostPosted: Sun Mar 23, 2008 6:59 pm 
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Hi Bronwyn
Thanks for the update. So sorry to hear he's displaying different behaviours, this must be challenging for you all! You have sooo much to deal with, my prayers & thoughts are with you.
Do you have any idea when Graham will be coming home?
I know Maxalon is an anti-nausea drug & Endone is a strong pain medication. I'm not familiar with the GTN patch?
As to requesting test results, this is a great idea, you may need them down the track, make sure you get the MRI's too. You shouldn't have any problem as you're his primary carer. Although if they say it cant' be done then tell them you will sign a "patient records release" for them. You should also have copies sent to your GP. To do this you will need to sign a "patient records release" at the GP surgery.
Are you away from home at the mo?
There were no real problems with the insurance company. All the neurosurgeon did was indicate on the claim "this man will never work again". I'm sure there was a little red tape involved....nothing is that easy or straight forward when you claim insurance. I will ask Mark & Kath for you.
Thinking of you.
Cheers, Angie.


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PostPosted: Sun Mar 23, 2008 8:34 pm 
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Well I asked the nurse. The patch is for blood pressure as it has gone up. His sodiium levels have collapsed even further so he is more into the fairies today. Now also running a temp so he is not having much luck. He has a huge sign over his bed saying no water and friends gave him 2 huge bottles of power aid as he said he was thirsty. I suppose they thought they were being helpful.
By the way I really appreciate your correspondence so thanks for being there for me. Bronwyn


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PostPosted: Sat Mar 29, 2008 10:41 am 
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Hi Bronwyn,

I'm really concerned about the level of medical care your husband is receiving. You need a very good doctor when you are in our situation. My doctor is filling out these forms, I believe that yours should be too.

If this was me, I would be getting someone else (although I realise that it can be hard to change these people mid course). I would also, when you have this sorted, be contacting the relevant medical association for their advice on the treatment you have received.

I would try phosphatydilserine for the alertness and memory. Its a suppliment and should not have drug interactions (check to be sure), available online or at health food stores.

There is a world of difference in health care that anyone can receive. I learnt to be selective early on. There are many great medical people out there - find one of them. Not someone who have ended up in the wrong profession or is simply out of their depth.

Regards,
Ken


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 Post subject: What price: fame?
PostPosted: Sat Mar 29, 2008 4:58 pm 
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Hi Bronwyn,

what an awful shock to receive. Asking questions is good, and taking the advice of people more experienced in these matters is very good.

From my point of view, I can only tell you that my life has been totally changed in 9 months, and there isn't a single thing I wouldn't do to have an extra day with my girls. Is it worth it? Yes, definitely.

Kind regards

David


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PostPosted: Sat Mar 29, 2008 6:26 pm 
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I am very unhappy with the neurosurgeon and the treatment so far. On Wednesdday we went into the Alfred to the neuro oncologist. He seemed concerned and wanting to start to do something positive such as start him on Temodar. So Graham was scanned so a mask could be made etc. BUT No beds so he goes back. He was sent to the Alfred with no patient notes or medications. The Alfred had no idea what drug etc he was supposed to have. They hit the roof. I left thinking I hope he at least gets back into a hospital bed tonight.
On Friday my daughter and I went into a very detiorated Graham. He didn't recognize us, couldn't talk and had the tremours something shocking. To put it midly I went psycho. Next thing they had the social worker trying to calm me down as I was demanding a MRI and the doctor to come in. I was asking why no-one had even started him on chemo. And they say to me do you think he has gone down hill?
Well I got the Dr in and he orders a cat scan. Then nothing. At midnight I gave up waiting for the results and went to bed thinking my husband will be dead in the morning. I rang his sister and told her he was going to die.
I get home and his dog starts this bloody crying that went all night.
I ring in the morning and demand the dr contact me and tell me what is going on. The charge nurse was actually sympathetic to me. I ask alll his friends to ring the hospital and give them hell and demand he be treated. So the DR rings at 12.30pm. His brain has swollen as they took of dexamethasone. He is back on it now. Then I ask why has he not started Temodar. He says he might as well wait till he goes to the Alfred next Tuesday as they now have a bed for him next Tuesday. Then he says well the tumour is pretty aggressive and is growing back and maybe it will not be worth it giving him radiation.
I go into Graham and he still can't talk, is in a nappy but at least is responsive and recognizes us. I think he is not dying today.
I don't know what to do. And now of course it is the weeekend and nothing happens. Are they just going to give up on him? Doesn't he deserve a chance? Yes its huge, and yes its aggresive and yes it is going to kill him but does it have to be this weekend? Can anyone reccomend a neurosurgeon who will at least give him a go? That is at the Alfred? I need soem serious help. Bronwyn


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 Post subject: Re: Your BAD weekend!
PostPosted: Mon Mar 31, 2008 10:30 pm 
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Dear Bronwyn
I am very sorry to read about your dreadful weekend. I would have been furious too & jumping up & down. For Graham to go downhill almost overnight must have been awful for you & your daughter to see him on the weekend like this!
I can't believe they took him off the dexa, especially when he hasn't started any other form of treatment?
I pray today was a better day for you & that your "meltdown" on the weekend has given the Dr a bit of a shake up!
If you need to rant & rave to get some help & attention for Graham then RANT AWAY! How utterly frustrating & frightening for you all.
I do hope Graham gets the bed at the Alfred tomorrow & that treatments start to happen. As to the radiotherapy, if the Dr is talking about foregoing this line of treatment I would be demanding a bloody good reason & explanation as to why!
I'll keep you in my prayers.
Thinking of you, Angie.


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PostPosted: Tue Apr 01, 2008 7:46 am 
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What a weekend! Sunday morning the neuro rings. It's no good. He has 1-2 weeks no more. Start pallative care. I ring everyone and tell them it is the end. I ask how do I do pallative arrangements? He says hasn't the paalative care nurse contacted you? I say no. No-one rings me or sees me. He says the oncologist has seen you? No. I say this is the third phone call. He says no fourth. I say third to me. (he spoke to my daughter once). He says well we are busy. So 17 days, three phone calls and one contact. I don't kow what to do and go to pieces.
By Monday I kind of have an end plan and a mircale happens. He rings me! The Alfred refuses to give up. So having treatment is up to me. Is he crazy? I get thrown a lifeline and he says you decide. I wouldn't but it's your choice. Off course we are having it. So today is Tuesday and he starts radio. at 4pm. But in the meantime they lost his Bed!
I am too scared to hope now. :twisted: :twisted:
And Graham has no idea what has been happening.


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