Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Dear Arch

I am so sorry for your loss my husband also passed away on the same day. He was 34. I can feel your pain and i pray things get easier for us both. Just know im thinking of you and your family. Wish you the best for the future
Sheree and family xxx

Thank you for your kind words. Itjust doesnt seem real yet as it feels like he is back in hospital. It hurts because he is only 34 and we just celebrated our 7th wedding ann and our babies 3rd bday. Billy isnt goin to get to know his dad like me and Brodie did its just not fair.... He wasnt in any p...

Hi everyone i hope your all doing fine.... Im so dont want to write this but Michael passed away on sunday 6th of May. We have just returned home fromhis funeral i really dont know what else to say. He was one amazing person my husband he was such a fighter. I just hope all of you that are still fig...

Hi well we have been to so many doctors and no one will do anything. Dr Stalley is a sarcoma spec but as he wrote surgery isnt an opition. We have been ringing but no return call just a letter to pretty much say to get back in contact with Mick's chemo doc and well no one will touch him. We have see...

Hi everyone how are you all doing? I hope you all are well. I thought i would finally check in while i have 5mins and give you an update on Mick. Well i wish i could give you good news but i cant. We went and seen another dr, Dr Paul Stalley in Sydney but have just recived a letter saying that he wo...

Hi guys how you all going. Well just an update we went to the doctors today and well we had scans done before check up and well the chemo he had hasnt help any at all the tumor have grown only sligtly and maybe a few small ones in the lungs. They have told us there is nothing else chemo wise that th...

Hi guys well to update you MIck has been in hospital since early thursday morning. I had to take him up as he had pain in the right side of his chest and couldnt breathe properly. He is still in hospital they are changing his pain medication and cant come home til its under control. He still cant an...

Hey just checkin in. Just letting you know the chemo Mick is having is called Methotrexate they said he is getting a high dose of this and also that they dont use it much at the hospital. He so far well ok he had it on thursday and came home friday he didnt have a real good night last night and has ...

Hi guys how you all going? Well just keeping you updated bout Mick. Well we found out that the sutant never worked with the resent CT scan it picked up a new tumour in the brain and a few new ones in the lungs and the "old" tumors in lungs some had grown so they stopped the trial. He is no...

Hi Olga yep rang the hospital and well his doctor is away but the one left in charge has tod me there isnt anything they can do but im not happy with that.. His doctor will be back this friday so he will call us then the lady in his office has left hima not a we will be the first ones called... he i...

Hi guys just checkin in hope you all are well... i just have a question...while your on the sutent is it normal to cough blood up? if so how much and how long and is there anything that they can do to stop it? Mick is on his 2nd round of sutent and well it will be a week since he started to cough bl...

Hi guys well just an update the doctors have put Mick on a trial drug sutent. It is extremely expensive but hey its will hopefully be worth it. Just looking through the notes and it seems you all have been on this drug. The doctor told mick he was the 6th person with the same type of cancer on the t...

Well check up was really not worth it in a way. The doctor is trying to get on to some drug company(which we dont know the name) to see if they would give MIck drugs free with out charge or min charge and see if it will work on him. It turns out there is also 3 new small spots on the brain they are ...

Hi all well just an update mick had the stereotactic radiosurgery on the brain in october we find out on the 31st jan results of an mri that he recently had and also he had an ct scan of his chest and abdomin and from the report in that we readit looks like there is a new tumour in between his kidne...

Hi guys well i just giving you and update and i guess looking for some answers. Well Mick has been told he now has a tumor in the brain. He had to have an MRI and we get the results tomorrow and that will tell us where abouts in the brain it is and if they can operate i think or just getting passed ...