Hi Joes mum, sorry I'm just getting back to you now
We live in Northern Ireland and Matthew was the first case of ss they had seen and didnt know how to treat it, at first they were just going to amputate, they then got in touch with a hospital in Birmingham, England.We travelled over and he had a lift flap (limb salvage) with clear margins he was in surgery for 10hrs but he recovered really well and was up walking about 5dys after surgery,on returning home to Northern Ireland he then started his chemo, didnt get on so well with that, no complications but very, very sick and all the usual that goes along with chemo.
Our mantra at home was positive,mental attitude, we never let Matthew see us upset and we carried on as normal as we could and after Matthews treatment finished(october 31) he was back playing football mid November. Matthew is a typical grumpy, moody 14yr old and we love it, I know I personally let him away with things that maybe I shouldnt, but I cant be mad at him for very long, we dont know whats going to happen from scan to scan so we try to make the most of life and pray that this is the last we see of cancer, wishful thinking but its what keeps us going.
would love to hear a little about Joe and how he's handling things.x
denise clerkin said:
Hi Joes Mum,
My son was diagnosed with ss on his foot and we went with surgery with clear margins and then chemo, doxorubicin and ifosomide, that was 2 and 1/2 yrs ago and to date our scans are still showing no evidence of disease, I was very interested to know what side effects your son has had with the same chemo? how long ago was it from he was diagnosed?
JOE'S MOM said:
My son was dx with synovial sarcoma when he was 18..we did the chemo and rad and surgery route. But if I would have known what he would have faced later on I think we would have really thought about amputation. He was right handed and only 18 at the time and the tumor was on the right forearm. He goes to Hillman Cancer Center in Shadyside. His surgeon was Dr McGough and his cancer dr is Dr Tawbi. Who do you see? Would like to hear from you. Take care and if you need anything just let me know.