I know you're looking for others who may have also had sarcoma so I just wanted to let you know that you will be able to find them, and previous discussions to join in on about this, by using the 'search forum' option above. All you need to do is type in some keywords e.g. sarcoma and a list of discussions will be brought up that have mentioned this diagnosis.
You can also talk to others about this on the sarcoma website as they have online support groups there too. Just click here to find out more.
I was diagnosed in 2013 with a chondrosarcoma of my left FEMA , in July 2013 I had a major 5 hour operation to remove 12cm tumour and thigh bone. It's a very long recovery and still to this day I'm not recovered and can not walk I rely on mobility scooter and crutches to get around, my cancer up to this day in my leg is in remission but not my journey is fighting liver cancer. When where u diagnosed? Where is ur sarcoma? Is it soft tissue or in the bone like mine was. Would be nice to hear from you and sarcomas are very rare and there are not many on here who have experienced it in some way.xx
Hi So sorry to hear about your sarcoma journey, its awful isn't it! My tumour was 9cm on my inner thigh which was removed in March, had major surgery too, remover Quad muscle as tumour was contained in that. Yes a long recovery ahead. Yours is obviously a much larger spectrum than mine, your very brave. Mine is a soft tissue, mixed spindle cell type, was aggressive so was in surgery a week after I was diagnosed, it all happened so fast. Mobility not good either on crutches and wheelchair for long distances. Can I ask, is the Liver cancer a new diagnosis?. Thanks for sharing and keep strong. xx Emma
Hi there, I was diagnosed in March with UPS in my right inner thigh, adductor muscle compartment. It was around 6-7cm when first discovered and grew rampantly until I started treatment in April. I was asked to participate in a clinical trial funded by the Netherlands Cancer Institute in association with The Royal Marsden Hospital. I took a daily dose of Pazopanib ( Votrient) 800mg for 6 weeks, starting the drug one week before five weeks of radiotherapy. The effect of the drug was instant. I had been barely walking due to the pain and speed with which the tumour was growing, and latterly unable to even sit down. The thing was huge! It was like a hotbed of fiery pain, heat and anger and was draining me. But several days after starting the Pazopanib, it was like someone had turned off a switch. All went calm. The pain subsided, all activity seemed to slow up and, believe me, the tumour definitely shrunk back. I have now completed the trial and finished my radiotherapy. Docs are happy with the results and I await surgery in July. I am doing well and am walking well and only suffering from radiation burns to my nether regions which, unfortunately, fell within the radiation field and so I have open sores down below which are absolutely killing me!! But, overall, I am happy with how things are going. The only sticking point on the PASART trial was my blood pressure which rose considerably (one of the many nasty side effects). What type of sarcoma do you have....?
Hi Emma, sounds like you hard massive surgery too like mine, my liver diagnosis is new from may2016 last year his unfortunately it is not operable and chemo is only to keep the cancer from getting worse which is not a great thing, just feel sorry for my family and my 3 beautiful kids.it is lovely to chat and pls keep inTouch pls take care and keep fighting x
I am a sarcoma survivor, I had undifferentiated plemorphic sarcoma (MFH) in my lower leg two years ago, had radiotherapy & surgery. I would love to hear from people who have had a sarcoma and their experience. I sometimes worry about it reoccuring, so this is why I think this forum is good to share stories.
I have got Ewing’s Sarcoma in my left pelvis and T12 in my spine. It also traveled to my lungs but, fingers crossed, my lungs cleared up after the first few treatment sessions.
i have gone through VIDE for 6 sessions, Radiotherapy for 30 sessions on my pelvis and spine, now going through 8 sessions of VAI Chemotherapy. 4 more to go and I’ll have finished the treatment I was planned, have some scans and go from there.
hi, im just about 2 b diagnosed synovial sarcoma im 33 male and im absolutley petrified i cant explain how im feeling or even wat 2 feel. i do not know wat im about 2 face can you tell me abit bout the process u went through please
