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Hi, new to this .... I had surgery 5 weeks ago for Anaplastic astrocytoma grade 3. It has grown in a difficult area. They manged to remove 50% of a golf ball size. I am due to start radio and chemo next week for 6 was daily. I am also looking at the oxygen chamber whilst receiving treatment. Has anybody been through all treatments and leading a normal life ??
We were all new to it once :). I have the same diagnosis as you and they could not remove all of it either. I think radio and chemo is the usual approach. I haven't had a go at the oxygen chamber so I can't comment on that. I am sure somebody here can chip in with some useful information.
First off - how are you feeling in yourself? It can take a bit of time for everything to settle down after the op. I had no idea of what would happen. I did not have a biopsy beforehand so although we had a good idea from the MRI scans, it was not until I saw the surgeon afterwards that I knew what I had and what to do about it.
After that it all seemed to happened rather quickly. I was sent next door to see the oncologist and figure out what would happen next - pretty much the same strategy as for you by the sound of it.
Please bear in mind that my memory is nowhere near as good as it was prior the when the tumour started growing. I have to fill in some details from my wife. Some things I remember distinctly whilst other things have been lost.
I can give you more info about the radio and chemo if you like.
As for a normal life, that may vary considerably. My tumour is sitting in the left parietal area and affects a few things.
Please bear in mind that this is my situation and that may be rather different to yours.
If it is of any comfort, my op was in late 2010 - and I am still here!
Hopefully this has been of some help. Just ask if there is more that you want/need.
I never heard of glioblastoma until it happened to my husband. I am very happy for you all that you are able to continue your normal lives after the diagnosis and surgery, it's encouraging. I'm hoping my husband gets to a better place, right now he's confused and answers "I don't know"' a lot but he has had two surgeries in two weeks, the biopsy and having a shunt put the in. We are in the US and things are a bit different. He's been in the hospital since 2/15, due for discharge this week but he will go to a step down facility, rehab and physical therapy and hopefully home from there. I wish you all th best, thank you for Being so willing to share your experience and encourage others through your trials, I'm with you in spirit,
Thank you for writing back to me. I seem to have the same problems you are having. It is so lovely to read you had op 2010 and your still here. This gives me lots of hope, strength and courage I will be as fortunate as yourself.
I feel ok in my self, strong and healthy and when people see me they can't believe I have what I have. I have had my 3rd session of radio and chemo today. I have another 5 and half weeks daily left to complete. My head stings a little but I've been told this is normal. Been a little poorly with the chemo but fingers crossed more anti sickness tabs I'll feel better. My tumour sits on the right side and effects my left side. Thank you again Mosey
Hello again Mosey,Some more bits and bobs for you. Feel free to ignore any :)I know how you feel about not being able to work or drive There is a slight chance (but unlikely) that you could get your driving licence back but that would not be for some time. With work? I would pretend that it is a holiday for now! Worry about that later once radio and chemo are over with.Talking about that, I am sure that you know that at least some of your hair will fall out after chemo and radio. I lost patches where the radio went through my head. I looked a bit daft with some bits still there. It is no big deal. I know that it may be easier to say that for a bloke. But Sinéad O'Connor looked pretty good.You will slowly get more independence back. Go for a walk around the block or down the road for a bit on your own to start with. They can send the dogs out to find you if you are not back within 10 minutes! Things will improve - honest.I think your family will want to help out. They may not know what you would like but you can tell them. That's what family and friends are for. There are some books you can download from this web site about this.When I go for a MRI I pop in to the Maggies centre for a cup of tea. The people there know what you are going through and can give advice or they'll live you alone to just chill if you would rather. They can also point you in the right direction for help with sorting out benefits for you - Employment and Support Allowance etcI know of a chap who has a tumour and is writing a blog about what he is going through. He is having chemo right now as well. You could have a look at www.ngomedia.org.uk/.../ Cheers for now.
Well done on getting through the surgery.
My one tip for radiotherapy is to keep very well hydrated - I think I avoided that kept most of the side effects away.
Read my bio for the medical details, but I am now a Grade III (with nasty hints of Grade IV) anaplastic astrocytoma survivor. Just today, I was confirmed as stable enough to go on to six monthly scans.
I am on anti seizure medication and have no lasting side effects that I am aware of. Feel free to message me for more practical tips - there maybe a delay in reply as I am a full time secondary school teacher (no room for cognitive/memory issues in that kind of job!)
Good news about stretching the MRIs out to six monthly.
I've just read your story. You seem to be a glutton for punishment! Hopefully that's the ops over with.
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