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.
I've just read your profile and I can identify with you in so many ways. My husband was diagnosed in October 2008 and now has no use in his left arm and is very unsteady on his feet. His personality seems to be changing very much like BJ's. It's hard to know somtimes how aware he is of what's going on.
It must be so hard reaching the stage you are at. You have so much to do caring for BJ as well as all the normal things that need to be done and dealing with the emotional side. My heart really does go out to you.
I think that even if we explain to people how BTs can affect the patient they really cannot imagine the reality of it. It's a very cruel condition both for the patient and people around them.
Ravi sorry to hear that you are going through such a rough time at the moment this thing really is a monster of an illness love to you and bj Lesley hope your dad is feeling better and you too its not nice when our loved ones are bad Carrie sorry to hear your hubbys mobilty is poor hopefully that will improve Diane how is your hubby now Joan hope your hubby is still doing well Emma good news your husband has got a new treatment Gayle are you still celebrating your good news you should be girl CH I only just read that you got good news too congratulations to you to celebrate girl
My hubby has been not to bad he has now finished the first big dose of temozolide does the dosage go up again or does it stay the same?
Thank you all for your kind words. Unfortunately BJ can't have Avastin due to his physical weakness, no more options left. For those of you who are looking ar Avastin, i recently researched this and found that in America it is a first line treatment and there have been cases where tumours have shrunk and in a few cases disappeared! From my understanding if a patient is physically well, Avastin can be considered in the Uk but only for three months. worth pursuing.
Had another crap day, bj thinks he is doing more in the day than what he is, gets angry when we tell him the truth. His family has been round today and had another arguement with me. They won't help us and won't accept that he is weak, they think he is going to be ok in the next few weeks. I hate them so much. Of course bj has no idea whats going on so he can't defend me. It's bad enough coping day by day but to have this on top is stressful.
Sorry to hear that you are still having such a tough time out there its a pity BJs family were not a bit more supportive to you, you could be doing with the help at this tough time, hope things get a bit better for you, thanks for the information on Avastin, you take care.
Really sorry that so many of us are going through such hard and low times - but as ever the support on here is truly amazing.
I havent posted this week as I have slipped a disc and couldnt sit! just what we needed - slowly on the mend now though.
Ravi so sorry you are having such a crap time made worse by his family not understanding or helping in anyway - I had a simialr problem with MIL - we had to have a long heated discussion before she realised she was in denial - perhaps that is what is happening with them - we have to live with this damn disease day in and day out - they can 'walk' away and go home and not have to physically face what is happening & they can carry on with their day to day lives LUCKY THEM EH! perhaps a frank conversation with them maybe the way to go but its a fine line as I know I didnt want to upset anyone but needed more support & understanding. I hope you can find a solution soon - it will make it a little better for you knowing they understand. Thinking he is going to be ok in the next week or so - do they know exactly what is happening here or is it denial???? - sorry this is a bit of a ramble but hope it helps in some way xxx
Well heres my little update.... We were at the Marsden yesterday to find out more about this trial - this is a Phase 1 & phase II trial they are looking at putting M into phase 1 as he is on epilim so not elgible for phase II. The drugs are Pazopanib & Lapatinib?????? - there are loads of side effects which could happen but as its a trial you get to hear the lot! which has actually made me think are we doing the right thing..... the drugs bascially stop the blood supply to the tumour there for HOPEFULLY stopping it growing, it also stops the cancer signals getting to the tumour - in theory it sounds amazing and some people have had a positive response. He has to have an MOT & another brain scan before they will give us the tablets and physically take him on to the trial. i have lots of bed time reading to do and then have to explain it to hubbie so that he understands - no easy feat!!
If anyone has any knowledge or are on this trial any advice would be appreciated. back hurting now so must go! Thanks Emma x
Sorry to hear about your slipped disk thats all you need, it never rains but it pours, hope you feel better soon. Never heard of those drugs but have hears of other drugs that do a similar job, it sounds very promising, they sound a bit like Avastin and it has very good reports and success rates, lets hope these drugs are just as good, keep us informed, I am looking into all sorts of other treatments at the moment, hope Mathew and the kids are okay and your back gets better maybe a glass of wine would help tonight.
Thanks Gayle - wine and pain killers seem a perfect solution to me!!!
I would be interested in hearing about the trials you find out about - I am always looking but there seems to be nothing else here at the moment that I have found it all seems to be in the USA - as ever! The marsden are pretty good and keep us posted and I always ask about drugs in the private sector which there are some but since they are chemo based the consultant doesnt feel that it will work since hubbie has had 2 types of chemo and nothing touched it.
hope you and yours are doing ok today - off to do kids tea and hopefully get them into bed early tonight they are still shattered from disney!
Unfortunetly most of the better trials are in the states they are much aggressive at treating the tumours intially and have much better success rates well at least thats what they are claiming, I am still thinking about making the journey to the states but a bit scared incase Martin was to take unwell over there its a real dilema, I know Birmingham QC are running trials and the ones you speak of are encouraging, I am just unsure what road to go down just now, if we go to the states it would have to be while Martin is fit enough to make a longhaul flight, its just such a hard decsion to make, not knowing whats the best.
Another stormy in night in Aberdeen! Hubby and I all nice in cosy with a nice log fire ah bliss hubby is doing fairly well which is very good ah bliss I am having a nice wee whisky hubby had only the one is that allowed surely it wont do him any harm maybe even one more I think we will push the boat out tonight when the going is good,
Hope all you guys are doing well too Emma those new trials sound really promising keep us informed please hope your slipped disk heels quickly I did that once so I have empathy for you. Ravi so sorry to hear your having such a bad time hope things improve for you soon. Gayle hope your okay to are you and Martin celebrating your resu;ts tonight and you and your husband to CH, Daisycat and Joan hope you are well and your hubbys, Lesley I am worried about you not heard from you all week hope your okay.
Oh well I am off for another wee dram speak to you all tomorrow.
Just on to say a wee quick hello - I havent managed on but am still around and thinking of you all. My dad has been quite ill since last sat but is slowly getting better - big episode of dysphasia and general unawareness for a few days but has progressed (albeit slightly) since upping the steroids to 6mgs - at least he can speak again. He had a chest infection which apparantly can cause bt-related symptoms? Gayle, Emma, CH, Joan, Diane, Ravi and Izzy - take care all you ladies.
Lesley xx
p.s Izzy - have a dram for me - log fire sounds absolutley bliss - cheers to you and your hubby tonight! x
