Hi, Just wondered if there is anyone out there with a Synovial Sarcoma that started in the Lungs - thanks.
good question, hopefully someone has answers/
My husband/s started in his knees and now it's in his lungs though.
When we found it, we found it in my husband’s lungs but I don’t think it was the primary site. Closer to the end of treatment when my husband was on votrient and the drug caused pain in the tumor sites, he had intense pain in his knees and we did an MRI and found tumors. My guess is those were the original tumor sites but can’t say for certain.
Thanks also not 100% sure where it started as the original tumour that they said was not malignant was in his lung, then the second one was between his heart and lung (attached to the heart) and now there is another one in the same lung!!
Mine started in an extremity like most SS patients. I will keep your family in prayer. I'm 20 months out from my initial "find" of the SS tumor in my right elbow.
Lungs are usually a secondary site for tumors from all I have read.
Hang in there,
(I am an SSWife too!). My husband's primary tumor originated on his back...growing between the ribs...very close to his left lung. It was not yet IN the lung, but it has since metastasized to the lung (close to the site of origin). I understand that my husband's site of origin is rare too (as far as synovial sarcoma goes). If you have any further questions don't hesitate to contact me. Best of luck....Jeanne
Thanks so much for the feed back - Jeanne it would be really good to contact you, would skype be ok?
I see now they have referred to 'it' as a posterior mediastinal synovial sarcoma!!
LOL....I wish I could say 'yes' but I'm using a laptop with no Skype capability. Please take my email and 'friend' me here as well. Email: ■■■■■■■■■■■■■■■■■■■■■. I work full time, but I check email every day.
Yeas my husband Evan it started out in the synovial tissue around his lung. How big is your tumor?
Mu husband's second tumour (the first was surgically removed with out clear margins) is 5.7cm x 6.3cm and grew in 6 weeks!! We have just finished with a second round of Doxorubicin and Ifosfamide and before the next one he will be having a CT Scan which I am holding fingers, toes and everything in between for shrinkage. Why can't this beast just leave him alone!!
Mine is in my left chest wall the two biggest tumors were 16cm by 15cm and the other was 10cm and a couple smaller ones. had 5 mnths of chemo which shrunk them but after 12weeks they had all grown back to originl size had some radiation and now im taking pazopanib
Yes, my daughter, at 26 years of age was diagnosed with SS in her left lung- primary site. So far, no metastasis. The tumor is 15cm- HUGE. We started with AIM chemo, but had a disastrous reaction on the 2nd round. That treatment was interrupted and we are trying Olaratumab with Doxorubicin. So far, so good. She’ll get another scan in about a month. The AIM therapy did shrink the tumor. Now we hope the Olaratumab will keep it from growing and eventually self-destructing. We don’t know what’s next, except continuing the Olaratumab as long as she tolerates it, after the maximum dosage for Doxorubicin is reached.
Looking back, she says she felt unwell for about 6 months prior to going to the doc. She had a cough, was losing weight and suffered from night sweats. Its amazing how we adapt to failing health. Wishing for the best. Hoping your journey is progressing as well.
Mine started in my left upper lobe. I do not have much information yet because I have not been back to the doctor since August 2016, we lost our health insurance. I will be going in a few weeks and I am scared.