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Update-now what?


#1

Dan’s surgery was this morning and he’s in recovery now. The surgeon took two nodules out of his lung and said there was nothing else in there. Good news. He did say that it appears that it is synovial sarcoma again but we’ll have to wait until the official pathology comes back in a week or so. I’m assuming we will hear from dan’s oncologist to look into what’s next. More chemo or something else. Does anyone have any suggestions of websites or resources look at? I feel like I want to be really informed. I don’t want to miss anything or have us make a choice that would rule out a treatment option down the line.
We also want to focus on Dans recovery from today’s surgery. We are optimistic about the early detection and quick surgery, but again I’d like to be as informed as possible. Thank you so much!
Katie


#2

I am curious Katie. Where is Dan being treated? Dana Farber? One thing you might want to ask, is whether they can check for cancer-testis antigens on the nodules they removed if they do turn out to be synovial sarcoma. I am thinking to do this the next time I need a lung surgery. There was a vaccine trial at NIH for synovial sarcoma patients with tumors expressing NY-ESO-1 (one of the cancer testis antigen) and one of the patient had a pretty amazing response. I think more trials aiming at this antigen and other cancer-testis antigens will come up and so it may be worth it in the future to know in advance which cancer-testis antigen Dan’s synovial sarcoma expresses if any. If he ever gets to the point of having to choose a trial because conventional therapy is no longer helping, it may make it easier to pick one…


#3

Thank you Elodie,

Dan is being treated at Dana Farber. Our oncologist briefly mentioned some immunothearapy options if this does turn out to be SS. He said there is a clinical trial that Dan might qualify for. He stopped short of giving us too much information because he didn't want to overwhelm us based on the fact that we didn't know what we are dealing with.

Dan questioned last night if all of the major cancer centers share information? Is it worth going to a place like Sloan Kettering for a 2nd opinion or will we hear the same things? I am probably getting ahead of myself. Right now there's no sign that he has exhausted all of the conventional therapies available.

I will be sure to email his oncologist to ask about the cancer-testis antigens though, that is good information. I know that they have his original tumor stored somewhere as well, which is why we did the VATS surgery up in Boston so we could have some consistency with pathology.

Wishing you all a great day.

Katie


#4

I think all sarcoma specialists know each others and share information when they go to the CTOS annual conference or the ESMO conference, or other conferences. But it doesn't mean they will always advise the same treatment, especially in difficult situations. So second opinions are always worth it, especially when you are not at ease with the options given by the oncologist. Also, when it comes to clinical trials, I highly doubt that a center will advise you to visit another center to find the best fit clinical trial if they have another trial that needs to get accrual (enough people to join).


Katie T said:

Thank you Elodie,

Dan is being treated at Dana Farber. Our oncologist briefly mentioned some immunothearapy options if this does turn out to be SS. He said there is a clinical trial that Dan might qualify for. He stopped short of giving us too much information because he didn't want to overwhelm us based on the fact that we didn't know what we are dealing with.

Dan questioned last night if all of the major cancer centers share information? Is it worth going to a place like Sloan Kettering for a 2nd opinion or will we hear the same things? I am probably getting ahead of myself. Right now there's no sign that he has exhausted all of the conventional therapies available.

I will be sure to email his oncologist to ask about the cancer-testis antigens though, that is good information. I know that they have his original tumor stored somewhere as well, which is why we did the VATS surgery up in Boston so we could have some consistency with pathology.

Wishing you all a great day.

Katie