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Stage 4 Spindle Cell Sarcoma

louiseward
Posts: 2
Joined: Mar 2010

Hi there,

I wonder if anyone can help me. My Dad about four months ago had terrible pain in his shoulder - after many tests they eventually diagnosed spindle cell sarcoma. They also noticed 2 spots on his lungs. Originally they were going to try three rounds of chemo to shrink it and then remove mass and replace shoulder joint, unfortunately the cancer did not respond to the chemo and he ended up having an amputation. Now the nodules on his lungs have become 11 and the prognosis is BAD. He is going to start palliative chemo but wants to know if anyone has gone through this and how long did it give them after the treatment as he wants to think about whether he goes for a couple of months now of some quality of life or if it is worth the chemo if he gets maybe a year.

Any help will be greatly appreciated.
Louise

daniellia77
Posts: 1
Joined: Apr 2010

Hi There,

I can try to help. In June of 2008 my boyfriend started to complain of stomach pain and he could feel a bump on his right side just under his ribs- again after many tests they also found a spot on his heart valuve he was diagnosed with stage 4 spindle cell sarcoma they went in and replaced the valuve and the bump from his side was football size tumor witch was on his liver so after they removed that he started chemo did 4 cycles successfully went to his 3 month follow up everything looked great 2 months after that he started to feel funny so i had his 6 months scans moved up. and the finding were that it has came back in his kidneys so they started his on chemo therapy right way only bad thig was he was allergic to the chem so they start him on something new after the first cycle he starts to notice his hand is going numb and he is having sezir type things where his whole arm is twitching like crazy so they do a brain scan find a tumor in his brain that need to come out asap so he goes in gets the tumor removed starts radation thats he says is worst than chemo finishes that does a scan to start chemo again cause they had to stop so they could do the surgery and radation, well the scan findings are he had developed 2 more spots in his kidneys so there is 4 all together 2 in each kidney 1 has came back in his heart. we start the chemo everything goes well til christmas eve morning he was getting ready to go snow boarding picked up his snow board and broke his rib the first one up by your shoulder well come to find out the cancer is also in his bones thats why his rib so we continue on the chemo til his follow up scan witch show that its not responding
so we were going to try some clinical trials but just the other day he broke his hip and it is in his shin bone so they want to get him on radation witch disqualfiy him for the study so we are starting a different chemo that can be used with radation and thats kinda where we are at now. i dont know how that will help you but i am really sorry to hear about your dad.

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