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Synovial Sarcoma - Online Support Group

So confused, sad, trying to be hopeful


#1

My husband had an 18 cm tumor in his neck removed in 2011. Then had aggressive chemo (ifosfomide and etopside) and radiation followed by major surgery. No complication for 4.4 yrs. then a small lung mets removed in October 2016. Clean scans mid December 2016. ER visit this past Wednesday after 2 weeks of coughing and shortness of breathe. His right lung is partially collapsed, filled with tumors that encompass pericardium and pulmonary veins and arteries and cancerous fluid. It’s pushing on his left lung. Also tumor on his liver. His abdomen is also full of enlarged nodes that are possibly his secondary lymphoma. We live in Maine and have been followed here, but all tx has been in Boston. We’ve been told the only thing we can do is repeat chemo to possibly extend life. His secondary lymphoma makes him ineligible for most trials we’ve seen so far.
Does anyone have any thoughts?
Is this the end for us?


#2

I am not much of a help, although my 11 year old has recently been diagnosed with synovial sarcoma but only 2.4 cm and completely removed last summer. Just saying prayers for you and your husband especially, and sending hopeful thoughts your way.


#3

Dear Mainemom,

It’s such a difficult time for you and your whole family. We hope that you get good advice and steady support from your medical team, friends and family.

Wishing you warmth, comfort and love

Seenie from Moderator Support, on behalf of all of us at Ben’s Friends


#4

Dana Farber in Boston is an excellent sarcoma center. I would trust their opinion. Your husband’s case is unique though and that makes it tricky. I couldn’t find a report of a case of synovial sarcoma + follicular lymphoma on Pubmed. You could try to get a second opinion from one of the major sarcoma center to see if they have encountered such case (I am thinking MD Anderson in Texas or MSKCC in New York). What chemo would they use? Ifosfamide+ etoposide is not conventional for synovial sarcoma but I guess they chose this combo because of the lymphoma?


#5

Thanks for your responses. He has been treated at both Dana Farber and MGH in Boston. Edwin Choy is his primary oncologist. They use ifos on sarcoma there. His lymphoma has never actually been treated, just vicariously through the sarcoma tx. Dr George was the one that said he won’t qualify for trials. It’s so hard to hear. His case is so unique it makes it really tough. They would repeat the same 2 drugs for chemo, as he did respond last time.


#6

I also have SS in my lung , have you looked into the NY ESO 1 trials that are currently ongoing ?


#7

Are you were participant in this clinical trial? I am curious because my husband has synovial sarcoma. There is a long story behind his diagnosis and treatment. A quick summary, we went to Dana-Farber for a consult on January 10 to see about this clinical trial. They needed to see if he tested positive for that specific gene. In a nut shell, we just found out last week that he did test positive for the gene and could be a possible candidate for the trial. However, prior to me the results of the test, his health was seriously declining. An emergency scan revealed that the cancer was even worse. Our oncologist in Maine did not feel he could wait any longer for the results of the testing, so my husband started on Votrient 11 days ago. I would like to know more about the clinical trial as to whether you have had success or not with it. I am also curious if you had pot experience without rent as well. Blessings to you on this very overwhelming journey!


#8

I also live in Maine, and my husband also has synovial sarcoma. I understand this cancer to be very rare. My husband was initially told he had kidney cancer. After a nephrectomy, there was a misdiagnosis of MEST- mixed epithelial stromal tumor. After three months of living a somewhat normal life, thinking all was well, he started coughing up blood. An emergency scan revealed the cancer was back in his empty kidney bed, abdomen, and his lungs. It has been a long journey through chemotherapy, consults at Beth Israel as well as Dana-Farber. There are many, many more details to the story and where he is out right now. I just wanted to touch base quickly to let you know you’re not alone on this journey, nor are you alone in Maine! I understand, especially as a mom to four children. This is such a scary, heartbreaking time for all of us. Every moment is still surreal to me because I cannot believe it is happening.


#9

Hi there. My husband was not eligible for any clinical trials. He is also too ill for any Treatment. We are home with hospice care.


#10

Dear Mainemomof3,

We are in the exact same boat in Southern Maine. Hospice just did the admission for my husband yesterday. I am so sorry and sad for your family as well as ours.


#11

So so sorry. How is your family holding up?


#12

Prayers and love from South Dakota…