Hi my partner was diagnosed with SS 6cm -bisaphic ssx1 on chest wall in early 2017, chaemo and radiotherapy then surgery followed by more chaemo ending in Sept 2017. Scans 3 monthly all clear until Feb 2019 - 6 mets left lung, 1 in right lung and Vats surgery soon. I know this is aggressive & more mets may appear can others please tell me how they had their lung mets treated & the results of the treatments please.
Also has anyone been on any trials involvong cryoablation with immunotherapy? Or clinical trials that have had some success with? Many thanks!
have u receive my mail
Most people take Votrient (pazopanib) for a while once they’ve exhausted the chemo. There is an NY-ESO-1 trial your partner could look for in clinicaltrials.gov A lot of people are getting good response with that.
Thankyou had terrible news today. Had Vats which removed the lung mets however surgeon said he also saw very small nodules on chest wall. He said these can’t be surgically removed because too many . So now we really need to do something quick.
I’m sorry. An ablation would be my choice (Dr Auoun in Detroit or Dr Dupuy on Cape Cod). I have a friend who did an ablation with Dr Dupuy for a different sarcoma. I can connect you if you’d like. Dr Jason Williams does ablations and intratumoral injections of anti-Ox40, immunotherapy and others in Mexico. I think around $50k out of pocket. Others above often covered by insurance. I know a couple people who have done this for other cancers. Williams Cancer Institute
Thankyou that does sound promising. I’ll get back to you soon. I’ve been researching for hours now and think im doing my iwn head in. What doesn’t help also is that we are in Australia. I just need to be so careful and make the right decision because we may not get a second chance to fix this or at the very least slow it down.
I do like the sound of this trial does anyone know anything about it?
hi dadoona
my personal advice that if you go for immunotherapy trial there is lot of paperwork and blood testing and slide test so go for this homework all trials are free even they paid u a city to city travel expenses please do not tell at airport that u r in usa for medical treatment they charge for this and faith in god and yourself every thing is to be going all right every treatment success is person to person so go head
good luck thanks rk
The only trial here that I see is recruiting in your link is the pembro/interferon gamma study. They’re very excited about it. I’ve talked to Dr Seth Pollack in Seattle and Dr Brian Van Tine in St Louis (for synovial, I cannot recommend Dr Van Tine enough—even if you consult him just once in St Louis) about it. The current NY ESO trials require a specific HLA type which you can be tested for. I agree with the comment about getting the homework part out of the way with HLA typing, testing for presence of NY-ESO (most SS express this, but not all). Currently only variations of HLA type 2 (this is a bit more common but not everyone with SS—I am HLA type 3) are enrolling. I am told more HLA types at some point will be included but it might be a bit.
I just saw you are in Australia, so my comment about seeing the doctor in person may not be very helpful. You can email the trial contact listed for more info. These sites have been helpful for me.
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there is sarcoma ontology centre
Dr sant Singh chawla 2811 Will shire Blvd 414
Santa Monica .ca 98403 usa there are doing lot of things on synovial sarcoma they too have govt sponsored trial pls call there to talk him or his any collegius definitely they are doing some thing for u it’s private hospital but do not waste time
thanks rk
To God be all the glory!!
Praise God for He is good and merciful In Jesus Name…
I was diagnosed with byphasic synovial sarcoma 2016, gone through 2x surgeries and skin grafting on my left hip. During healings on 2nd surgeries profused bleeding almost passed out, so 911 took me to ER. CT-Scan done in my head, found a tumor impression brain metastasis another surgery was removed. Multiple surgeries in 3mos. In short I’ve gone through all…and recieved 6wk radiation and 3mos chemotherapy end march 2017. almost ayear out of job. Of course I had every 3mos MRI and Chest CT-scan. Mets found in Oct. 2017 found out very small 2 to 3 nodules in my left lung … VATS done in Nov. 2017. Dec.2017 another IV chemo, atfer 3 sessions Feb. 2018 more nodules found on my right lungs. My Oncologist Dr. Marta Batus "RUSH MEDICAL UNIVERSITY HOSP. CHICAGO "orders to stopped the IV chemo and changed to ORAL chemo ( PAZOPANIB ) VOTRIENT 800mgs. I’ve been taking until now.
With unceasing meditation… prayers… surrender all your worries to The Lord our God Almighty Jesus!! Avoid Stress… God the Father is Merciful and forgiven… you will surprised Iam proud to say I am strong and feeling healthy!! Thank you Jesus!!
My secrets , home did some research how to keep healthy. I give up meats and chicken,dairies, soda, sugars salts, canned foods, eat organic vegetables and fruits only…
And organic juices like celery, parsley, cucumber, carrots, buy all organic berries and make smoothies add spinach, lettuces kale, arugula all organic greens… And go to Google’s look for Graviola, mangosteen, moringa, turmeric, Chorella and Spirulina all in capsules… takes all 30mins before meals.
to boost your energy. Stronger immunity slowly kills cancer cells… and my daily prayers recieving holy eucharistic celebration and communion… is the best medication… Glory to God…Alleluia!!
To all with cancers… dont give up!!! And good luck!! God bless us all anyways!
Loving daughter of God.
Avelina.
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Thankyou to everyone that has replied it means a lot. I’m even more stressed now than ever. Seeing oncologist on Monday but since reading report following removal of lung mets im very concerned. As well as a description of Vats surgical removal of 5 nodules mostly from pleural surface the Report then also stated - Right Pleural Tumour: Metastatic synovial sarcoma involving stroma of chest wall. So what im reading in this is that they found that the mets are now in the pleura which i believe is very bad??
Pleural Mets are in the pleural cavity of your lungs. This is the outside lining of the lungs, and the easiest part to get to for surgery. So this is good news for you. I would talk with your doctor and get a better idea of what they plan to do, and where exactly the Mets are.
Beau
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My son had pleural mets, which they said were impossible to remove because there is no way to get clear margins there. However there are t-cell trials that could help. Dr. Araujo at MD Anderson and NCI in Maryland have them. Look up Adaptimmune trial in clinical trials.gov
Thanks for your reply! Did the pleural nets ever cause a pleural effussion? Did they do any treatment for them and did they griw over time? Thankyou again i appreciate any feedback very much.
Im confused i would have thought pleural mets are the worst because they cant remove them with surgery?? Also i read it’s common for a pleural tumour to cause an effusion?
Yes, he did have a pleural effusion. He had 2 collapsed lungs, and they were able to drain off fluid. The dr will probably do chemo or go to Votrient. I would ask for Foundation One testing immediately!! Then also see if you are a match for any of the NY-ESO-1 trials (vaccine: CMB305 or t-cell Adaptimmune) ASAP. You want to know if you’re a match for those trials now for later when chemo or Votrient might stop working.
Thankyou Chrissy for your information it really helps a lot although it must be so painful still to talk about the loss of your beautiful son., but please know that you are such a help to so many! We are seeing oncologist on Monday and as far as i know they have sent away for gene testing - do you approx how long it takes? I think the pleural tumour is under 10 mm but many other very snall ones as well. Yes i want answers re targets asap especially because we are in Australia & will prob need to come to US if we can get onto a good clinical trial. I’m not sure how big a pleural met needs to be before it causes an effusion?? My big concern is that we get an effusion and then won’t be able to fly to get to a clinical trial.
What I’ve also thought about is getting some radiotherapy but just enought to stimulate / activate t cells and following up with Opdivo immunotherapy - which i know we’d have to pay for. I’ll discuss this with oncologist on Monday.