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.
Here i am again confused what is chroners syndrom, my hubby been unwell vomiting and shaking hundreads the doc came to see him and said its chroners syndrom caused by brain tumours i asked him to explain he said your consultant will tell you more but i cant get a hold of him help please if any of you lovely people know. How are you all doing? Is there a new cure in America lets hope so how do i contact dr Fine is it possible for our hubbys to get treated over there would it be expensive if it saves lifit would be worth every penny what do you think ladies? Any snow where you all are?
Sorry I cant help you on this, have never heard of chroners syndrome, the GP who came out could have at least explained a wee bit more instead of leaving you worrying. I've noticed my dads legs shaking a bit lately but have assumed its the steroids. Could the vomiting have anything to do with chemo?. When my dad was first diagnosed I looked at various places in America as they appear to treat BTs more aggresively than they do in Britain but I think it was just wishful thinking on my part. I think you would have to take into account cost and how well the person would fare up to travelling etc? It would be really interesting to know if anyone from Britain has actually travelled to America to be treated for GBM and what the outcome was? Gayle might have more info? It would be fantastic if her hubby managed to get on the programme over there. Hope your hubby picks up - do let us know what chroners is when you find out x
Gayle - The tiredness is awful isnt it - when I saw my dad today it broke my heart to see how old he looks - 3 months ago he was a very young looking 59 year old and today he looked like an old man who could hardly stand from fatigue. He is still managing to eat but nowhere near as much as he was weeks ago. Im wrapping christmas prezzies but have come on here for a 5 minute break - been doing it for hours and so bored of it now!
No snow here girls - cant build my snowman just yet! Take care all xxx
My Hubby is not on any type of chemo at the moment he just finished his 6 week cycle along rADIOTHERAPY a few weeks ago could it be the lasting effects of that i might try calling the mcmillan nurses tomorrow see if they can help my hubby is still poorly how is you dad is he still as tired. Have you finished all your xmas shopping? How many kids you got i bet you get your dad an extra special pressie this year i certainly will be for my hubby. Snow is still here.
If your hubby is still unwell tomor phoning the McMillan nurse may be an idea - might help put your mind at rest and you could also ask what the chroners is? Yeah my dad is still pretty much floored - he managed to walk along for a paper this morning whilst holding onto my mum but that was him for the day - wiped out basically. I do hope it the radiotherapy kicking in but who knows, we see the consultant next week so will see what they say.
Ive got 2 kids, Amber is 3 and Joe is 5 months- im on mat leave at the mo. Do you have any kids? I thought I was doing ok with shopping as have went a bit crazy ordering off the internet but i have quite a bit to get. Im finding it difficult to think of something special to get my dad. All the wrapping ive done tonight isnt even for my own kids - seems to be for everyone else. Cant be bothered with it all this year but my 3 year old's excitement is quite infectious so I have to make an effort for her.
hi Izzy, Lesley, Gayle and everyone Izzy the tiredness from radiotherapy can last for many months in some cases, as the treatment can cause swelling in the brain. but do call the nurses if you are worried, they will be able to advise. Lesley I agree re christmas, as I said else where I just want it over and done with this year, and have already done all the cards and most of the presents for others re america, yes they do have much more aggressive treatment in some centres. the place to be seems to be Dukes university. we did consider going there at one point but my hubby was really too unwell for it to be a realistic option in the end. You have to consider the costs, not just financial, but emotional, of being away from family and friends, and the possibility of your loved ones being seriously ill out there. I have to say I don't htink any of the treatments on offer there offer any hope of a cure, though some like avastin do seem to prolong life. I asked our consultant if any of his patients had ever gone to america for treatment and he said no, so I guess it proves too much of a challenge for most. goodnight all diane xx
Izzy like Lesley i have no idea what chroners is never came accross it, calling the mac nurses is a good option also your team at your hospital should be able to help also. Re America: I dont know what will happen as Diane says its a big decision there are benefits but also lots of negative factors ie the longhaul flight for Martin is a bit worrying the thought of Martin taking ill across in the states also, i am still awaiting on Dr Fine getting back if we do it will take alot of careful planning, i will also consult our consultant and his team in glasgow for advice, if there is going to be a real benefit and its possible we will definetly go, the difference in America is they have much more money than the NHS we have a terrific team in Glasgow but the NHS does grant them the money that the Americans have.
Lesley your dad is much like Martin it doesnt take much too floor him, he just gets so tired very easily i suppose when you think of everything they have been through this past 6 months its little wonder. Our team told us it was just the radiotherapy and continued chemo also the reduction on steriods that is causing all this fatigue. That is such a shame that you are on maternity leave and cant get enjoying your new baby to full the capacity because of this horrible thing, your dad will be really proud of his grandchildren though, I bet he loves spending time with them.
Diane I think we are all pretty much the same this christmas but we have to make an effort for our kids it can be so hard at times trying even for Martines sake, I hate going out to the shops seeing all the happy people thinking back to last year I was ne of them.
My hubby is a wee bit better today not so shakey but and vomitting has stopped prob cos he is not eating much but he is still feeling queezy. The mac nurses say they have never heard of Chroners syrdrom either will have to get through to the consultant sick of leaving messages for him do any of you guys have any probs getting through to your consultant its near impossible up here. Lesley your kids sound lovely a lovely girl and boy they sound do cute, we dont have any kids we planned next year to try for kids dont know how that will go now with all this mess, you cherish your 2. Gayle sounds very promising about america let me know how you get on with Dr Fine I would be very interested to find out, if its possible we would go to as you say anything with some hope Diane did you do alot of researsh into the america thing would you consider going now? It sounds really good and it might save our loved ones. You all take care and have nice day.
my dad died last march of glioblastoma. he was diagnosed the week before christmas last year with stage 4. he was my favourite person in the world. four days ago was my 22nd birthday and i've been feeling really sad lately.
from what i saw with my dad, advice your loved ones to get any medical help that is offered. my dad and mum live in america, and at the end my dad opted for a drug that isn't gov't approved. it was his last chance, and though it didn't work in the end (what can?) i think it helped him have hope and stay for longer.
with his glioblastoma he wasn't in pain, just discomfort. at the end he slept a lot and when he was awake he would cry and panic and didn't like us leaving the room. i am glad it wasn't another kind of cancer that would have caused him pain and made him waste away.
i miss him like the drowning miss air, and i wish it had been me that had got it. it didn't hurt too much during the process, only when he didn't know where he was and was terrified did it make me sad.
i hope you all make it through ok, sometimes i feel happy to be alive and can feel his ghost smiling with me.
So sorry to hear about your dad, it must be so hard for you, sorry to hear that you are going through a rough time at the moment. I lost both my parents when I was a bit younger than you and I know exactly how you are feeling.
What Kind of treatment did your dad get, did he get the standard treatment then the other drug that didnt work? Its good to know that your dad did not have any great pain my hubby has had some really bad headaches in the past luckily now with the treatment and steriods this has stopped.
I am sorry to hear that he was so scared, it must be horrible for people suffering with this it is bad enough for us their family.
I hope that you are and your mum are okay and getting through this I know how much you miss your dad, take care.
How are you all doing today another cold day up here my hubby is much the same as yesterday hope to find out more at the hospital. Hi Gabriela sorry to hear about your dear father how are you and your mother copying it will be particulary difficult for you guys at this time of the year.
