My partner Martin was diagnosed with this horrible desease on june 19th 2008. I am so scared of this monster of a disease, why does it happen, where does it come from? Cant we find a cure? please God find one soon. There are htousands of new cases every year why cant we save these peoples lifes from this horrible disease.
Hi Don, I'm sorry you find yourself here - but on the other hand you'll also find very experienced people on these threads about GBM - and I'm sure Martyn and the other chaps will be glad of male reinforcements :) By the way, there is another thread, We Talk Brain Tumours that is busier than this site and also there is a lot of experience with GBM, you might also want to read or post there.Â
There are also several others on the bt threads for whom tmz wasn't an option, so have had radiotherapy on its own. For years it was the only real treatment and is very powerful and goes on working after the sessions stop. Can your wife have any of the other chemo treatments later ? PCV for example ? There are also sometimes clinical trials, for example vaccines that might be an option for you? But I guess that is further down the line after rt.Â
I'm not familiar with the muscle wasting aspects of dex... B. my other half also didn't experience the euphoria - though it increased his appitite fo sweet things no end but he only took it for a few weeks before anfd after the operation. In our experience tiredness is very prevelant at the startand during rt. And of course if your wife has had a bad reaction to tmz then I can imagine she will have to build her strength up gradually - it can take longer than you might think. B was tired for almost 6 months after the treatment but it does gently decrease. I think also the pure shock of the diagnosis and coming to terms with it is enough in itself.
We have one of those eliptical machines, and especially when he was tired B used it for between 10 - 20 mins about 3-4 times a week. I'm sure that did him good. I think if you do get a personal trainer, make sure they understand how draining your wife's rt treatment is because people who are not aware can grossly underestimate just how tired you can feel, even not counting physically going to the hospital every day.Â
I'd say a regular walking schedule somewhere you can both enjoy would be great - but then the idea of a personal trainer sounds like hell to me and I don't think B could have managed it during rt. Also the timing of a personal trainer might be difficult because, I assume someone would arrive at a prearranged time but your wife may not feel like exercising at that time but may do later in the day. With rt I'd say rest when she feels she needs a rest and exercise when she wants to.Â
We have been very lucky with the period of 'normality' that you mention. I know many people are not so lucky. B finished the 'standard treatment' in March/April and at this moment is plastering a wall - although he has just started additional treatment for tumour regrowth that was found about three weeks ago.Â
Rt can lead to swelling in the brain and is often mistaken for the bt symptoms but it does reduce also with steriods. So memory symptons can seem to be continuing when in fact it's the rt.Â
Time lines, I suspect that no-one will say anything specific to you because they just don't know. If you read some of the profiles in We Talk Brain Tumours, you'll find enormous variety in how people have coped with treatments, and if they do give estimates it's just statistical averages and they can be misleading for an individual.
The recurring theme on these threads is love one day at a time as well as you can (Sorry, edited, Live one day at a time as well as you can - but maybe I was right first time :) Â Especially in the first few months everything can seem like a frenzy of emotional turmoil , and to some extent it stays that way but you do adjust.Â
Good news thank god, the tumour has shrunk its unclear by how much because there is still alot of swelling in the brain due to the treatment there is a huge difference between this scan and the previous one before any treatment, the consultant said there is nothing there to cause any great worries. The sleeping and loss of appetite is due to all the different treatment it affects everyone different, Mairi said that as long as Martin eats small snacks 4 or 5 times a day he will be okay, as for the temodal they were going to up the dose by another 150mg a day but because of Martins exessive sleeping decided to keep at the same level might get put up next month, and just to keep the dex at 1mg until the next visit, i am so happy think a glass of wine might be called for tonight, thanks everyone for all your support.
love Gayle xx
Hi Don sorry that you have had to join this site CH has pretty much covered everything for you. I did hear the consultant speaking to female patient today about the effects of dex and it can cause muscle waste if on a high dose for a long time, and one way to help is to do as much excersise as possible to help stop the muscles wasting away, hope you and your wife are both as well as can be.
Gayle, really great news - so pleased for you both, must be such a relief to know the tiredness etc is down to the treatment - hopefully you'll get a good night's sleep tonight, especially after your glass of plonk - cheers (no wine left in the house so raising a cup of tea)! x
Hi Don,
Sorry to hear about your wife - CH has already given you great advice. The only thing I can add is that my dad was also on 16mg dex when first diagnosed and has gradually cut down and is now on 4.5mg. He's also had no effects from this reduced dose but unfortunatley managed to catch pneumonia a few weeks a go which really set him back as he had tolerated the radio very well. For him, the best form of fitness was walking, even short distances to get a paper, he hopes to get back to walking once the pneumonia clears. As you will see from all the posts, everyone is affected in different ways from the BT and some people tolerate treatment better than others etc.
Thank for your good wishes, you better believe i will sleep tonight just wait through a whole week of barely sleeping. xx
Diane and Lesley
Meant to ask if you have met Alistair, he is conducting a research into the thoughts and mental ability of brain tumour patients, Martin had an interview 3 months ago at the beatson and he is coming to our home on thursday for part 2 of the interview then 3 months from now there will be a 3rd, he is working between the beatson and the western gerneral in edinburgh. hope you are all well.
that's great news. I am so pleased for you, you have cheered me up tonight! No, we've not met Alistair, wonder how he chooses his patients? anyway I hope you are now enjoying some sleep catch up! HI Don, sorry you have to join us, CH has given you good advice. My hubby too has visual problems which are now quite severe and together with his unsteadiness walking he is really very disabled now. But everyone is different as you will see fro people's profiles. re the steroids my hubby has been on varying doses for almost a year and has just about every side affect in the book, including the thinning of the muscles of the thighs and weight gain around the middle. Maybe a physiotherapist could advise? One came from our local hospice and recommended certain exercises, which were supposed to help build up the muscle bulk again.
Hope that you and your family are all well, it might be that when your husband was going for his treatment the research hadnt started, as far as i know for the first trimester of the interview you to be fairly recently diagnosed.
hi Gayle, yes that would make sense, as they would want to track any changes from the start. Interesting! hope Martin doesn't find the tests and questions too tiring.
Gayle - Hope your feeling refreshed today after a good nights sleep!i Funny you should mention the research as my dad just said a Dr from the Western had been on the phone this morning, who is doing research and asking him questions about how his mental capacity has been since he's been diagnosed etc. He couldnt remember the name but Im just going down so will find out more. Interesting if its the same person! lesley x
