Brain Tumour Survivor

Hi Bronwyn;

I have been reading through your thread and thinking, bleeding heck (well I’ll not say what I actually thought, if you get my drift) about what you and Graham have been through.

I must say that I am impressed with the treatment I have and am receiving at The Royal Melbourne. I was transferred there after my tumour was found at Maroondah Hospital where upon they made the decision to transfer me to RMH, as I was not capable of making decisions due to seizure.

The Neuro surgeon was able to remove all the tumour. All medical staff I have dealt with since were very impressed with his work, which set me on the course to recovery. The medical neurologist is also paying close attention to my condition with appointments every 10 days whilst my radio is being carried out at Peter MacCallum clinic at Box Hill Eastern Health.

The one thing I have insisted on is that they do not hold back and tell me nothing but the truth. Initially the Neuro surgeon held back until he sussed that I handle the situation for what it is but I am also going to do my best to beat it.

As for the GP thing, my GP will not interfere with the decision of the cancer specialists, and I understand that. My GP is continually being updated with my progress and meds I am being prescribed with. He uses this information to decide what he can prescribe for other things that will not detract from the GBM treatments.

I hope that now that Graham is under the RMH wing, gets the treatments and care required to give him the best quality of life for as long as possible.

I must also say I am with Mary on the snoring side of things. My wife has taken to the separate room. But also I must say that it is not always me that is doing the snoring.

Best of luck and good wishes to the both of you.

Thankyou Fraser. I appreciate your kind thoughts. Well we have started the Temodal and Grahams seems pretty tired and out of it today. I expect this will get worse as the days of chemo. continue. It is a hard thing to work out. The GP tells me that as GBM cells starts to die it actually swells from an iinflammatory response and his symptoms may seem to be worse. That I am to stop symptom watching for the time being. Easier said then done.
I am very pleased with your results so far and your positve outlook. Its unfortunate that Grahams tuomour was able to get so large before being detected. But the world is full of what ifs and what done is done. Maybe we see each other in the RMH without realising it. Who knows. There are a few on the site under the RMH. I wish you continiung good outcomes.

Hi Again Bronwyn;

Glad that Graham has been able to get going on the Temodal roundabout. I, fortunately, am having no problems with the light dose. 100 mg every day whilst Radiotherapy every weekday, Sat and Sun of.

I agree to a point with your GP’s advice about symptom watching as you said, damn near impossible to comply with, my wife does enough of the symptom watching for me.

I tended to push myself on two occasions and found I had to go for a nanna nap. I have been watching my temperature a bit also as I am now getting over an ear infection (both ears) which made them very sore and my temp went up a little but back to normal now.

If Graham gets tired, just make him go to bed for a sleep. He should not fight it; he will need his energy to beat the GBM. Good idea for you to take a nap at the same time so you can recharge your batteries.

Best Of Luck On the Road To Grahams Recovery.

Dear Bronwyn

I was so happy to read Graham at home & I hope you can put most of that awful experience behind you now. Also glad to hear he has started Temodal - finally!

Mark suffers from fatigue daily & his Dr said to go with it (not fight it). He can easily nod off whilst having a conversation, this is frustrating for him & I can only imagine what it's like!

I've also hear about b17 being used for brain tumours & must congratulate yr specialist on advocating this.

I would advise against adjusting Graham's Dilantin without consultation with his Onc. If you're concerned about the Dilantin & it's effects phone the Onc & talk with her about it.

Keeping you in my prayers & thoughts.

Cheers, Angie.

Well its been a week since he had started Temodal. Up until yesterday he was doing really well and some symptoms disappeared. Yesterday he went a bit muddled, got the shakes back, got neuraligia back and avioded talking.
I upped the dexa. by 2mg in case it was swelling. He is very tried and wants to sleep a lot. No appetite. He is a little more clear headed today and told me he doesn't want to talk as he has trouble finding words. That's a bad sign I suppose. The tumour must be winning again.
I have no-one to ask questions other then here as we have no contact details for any of the medicos.
Does the Temodal cause swelling? As he has a large tumour any swelling could be detrimental. I simply don't know.

Mary Posted: 15 Jun 2008 09:00 pm Post subject: Chemobrain and side-effects of Temodal

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Bronwyn,

In terms of symptoms, Graham may possibly be getting chemobrain (due to chemotherpeutic drugs on good brain cells) and it happens for lots of people on chemotherapy (not just brain tumours either), so maybe just you'll just need to give it some time and get through the treatment. Some changes in his alertness and otherwise might be expected for a period of time while he's on it.

Chemobrain:
http://www.mayoclinic.com/health/cancer ... nt/CA00044

Here's an article on Temodal and Brain Tumours for you regarding side-effects and I've copied a couple of paras for you (more via the link):
http://www.uwhealth.org/servlet/Satelli ... =FlexGroup

• Headache – Headaches are a very rare side effect. If you have a severe headache while on Temodar®, it is most likely not caused by the Temodar®. It may be a sign of brain edema or swelling. Be sure to discuss these headaches with your doctor. She or he may prescribe something to treat them. We suggest you use Tylenol®. Do not use ibuprofen or aspirin.
o Use with other medicines - Temodar® most likely will not react with any other medicines you take. You should not add any new medicines while taking the Temodar® unless you discuss them with your doctor. Make sure your doctor and pharmacist know all the things you are taking. Be sure you tell your doctor about any herbal supplements or vitamins, too. Herbal supplements and vitamins need to be considered medicines. Many times we do not know the interactions between herbal supplements, vitamins, and Temodar®. It is important you list them each time you are asked about your medicines.


Bronwyn Posted: 15 Jun 2008 09:01 pm Post subject:

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Do you have the private numbers of your specialists to ring? I don't . I don't even have my GPs home number. I have to ring the locum service if something goes wrong. I do have the neurooncologists pager but I would not ring him to ask why Graham seems to have gone downhill. He would tell me He has a bloody tumour. He has told me to ring if he runs a temp. only My husband is going to die. You are lucky. He has nealry deid three times. For some reason he is still here and you know sometimes i think maybe it would have been better if he did die back in March because this is so painful I wish I were dead. Some nights i just want to walk away and it is so hard to stay .This is my only support and now you have destroyed it for me


Mary Posted: 15 Jun 2008 09:24 pm Post subject: HomeHospice

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Bronwyn,

Hang in there. It's been a long hard road and yes doctor's aren't much value when it comes to after hours support but I guess they need some reprieve from seeing patients all day long. I've come across this website for HomeHospice and support for carers caring for the terminally ill. It says that they people in all areas that might be able to spend some time with you (in person) if you feel as though that might be some help, maybe give them a call and there's an 1800 number on the fact sheet via the link below (not sure what hours they operate but if you can't get a hold of anyone now perhaps try again in the morning).

http://www.homehospice.com.au/docs/Part ... spice2.pdf

HOME Hospice is a free community program that provides support to people caring for terminally ill loved ones at home. To achieve this, we provide carers with a volunteer Mentor, who guides them through the caring journey, providing information, education and links to the support services needed at this physically and emotionally demanding time.

Hi All,

I have edited the posts above to remove some content that I feel contravines the spirit of this site. I was teary as I edited the posts because I, like anyone on this journey, knows that it is the cruelest roller coaster of all, and that all here deserve the utmost respect.

Any posts that retrospectivly intend to critique or question the path that someone here has taken will be deleted.

I feel for all of you in my heart, please, please, only post positive messages of help, support, or advice.

Best wishes,

Ross.