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Lung nodule pathology results positive for synovial sarcoma


#1

I had planned in my mind for it, but didn't want the results to be this. It was unfortunately the most probable outcome, and my doctors prepared me for understanding that I could have, or do have as it is now, metastatic cancer. Actually, technically they did get negative margins, so it might all be gone, but I will still follow this with some sort of treatment. My wife Katie and I will be meeting with my thoracic surgeon and oncologist this thursday do discuss my pathology results and my treatment options. My oncologist briefly discussed with me that clinical trials would be a good option for me, hopefully the best decision will be obvious for me to make.

It is hard to hear doctors say I have an aggressive disease when I feel so healthy, but I consider myself a lucky man to feel like that.

If anyone has any advice about questions to ask about clinical trials, I would definitely appreciate it.

Thanks,

Dan


#2

Where are you being treated Daniel? I would ask whether they can check if your nodules carry any of the cancer testis antigen, in particular NY-ESO-1. Since the nodules were taken out, I would assume you are considered NED (no evidence of disease) right now which means that you can't qualify for most trials. There is a trial open for NED people though, which was offered to me:

http://clinicaltrialsfeeds.org/clinical-trials/show/NCT01141491

I personally do not like this trial because the gangliosides they are targeting have been found to be weakly expressed in synovial sarcoma:

http://www.ncbi.nlm.nih.gov/pubmed?term=gangliosides%20synovial%20sarcoma

For some reason rhabdomyosarcoma patients are not eligible for the trial but synovial sarcoma patients are. That makes no sense to me.


#3

Hi Dan. My son, who is 24 years old and newly engaged, also has METS to his lungs. He started on VOTRIENT (also known as PAZOPANIB) a few weeks ago and is doing very well with few side effects. This chemotherapy is oral and he takes it at home. He had limb-sparing surgery after 7 in-house chemotherapy sessions, 25 external radiation treatments and internal brachytherapy. VOTRIENT has shown great promise for synovial sarcoma METS. It was originally used for Renal Cancer and showed such great results that it is now being used in cases like yours and my son's.

I know that this is scarey stuff. Bless you and good luck. My thoughts and prayers are with you. Keep fighting as hard as you can.


#4

Thanks Elodie,

I am being treated at Dana Farber/Brigham & Women's Hospital in Boston. There was evidence of a nodule in my right lung, but really small, and not conclusive since it only came up on my PET scan. I really appreciate all the information you have posted, and will definitely ask about the cancer testis antigen. I read your history, you have been through alot, and thanks for making that information available. I'll post more information after I have my consult with my oncologist tomorrow. Best of luck to you.


Elodie Espesset said:

Where are you being treated Daniel? I would ask whether they can check if your nodules carry any of the cancer testis antigen, in particular NY-ESO-1. Since the nodules were taken out, I would assume you are considered NED (no evidence of disease) right now which means that you can't qualify for most trials. There is a trial open for NED people though, which was offered to me:

http://clinicaltrialsfeeds.org/clinical-trials/show/NCT01141491

I personally do not like this trial because the gangliosides they are targeting have been found to be weakly expressed in synovial sarcoma:

http://www.ncbi.nlm.nih.gov/pubmed?term=gangliosides%20synovial%20s...

For some reason rhabdomyosarcoma patients are not eligible for the trial but synovial sarcoma patients are. That makes no sense to me.


#5

Dana Farber is a good sarcoma center. I am curious what they will offer. Let us know…


#6

Dan-Farber in Boston is excellent. My son is going there as well. This is where he was started on PAZOPANIB.


#7

HI Dan we have a general support group in UK which works by email. You are welcome to join it and ask questions on there as there are a lot of people who have had experience of trials, currently and previously.

try this

Email list offering mutual support to sarcoma patients and their carers <■■■■■■■■■■■■■■■■■■■■■■>

If you cannot get to it let me know and I will aks how you join as I cannot remember now.

I find it a very useful site, lots of support and information generally on Sarcoma related topics.

best wishes

ScattyShirley