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Synovial Sarcoma - Online Support Group

An update 5 years later


#21

Hello,
I am looking to learn as much as possible regarding synovial sarcoma on behalf of my nephew. He just turned 23 and has tumor on knee 2 on hip and spots on his lung. He has went to Sloan Kettering for evaluation and is being treated at Moffit in Fl. This is all new to us and would welcome any recommendations for treatment, questions to ask, things to watch for etc.

Thank you and best wishes for your health.

Ginger


#22

My son had Foundation One testing, but the results were inconclusive.

We tried to check and see if he expressed antigens for the t-cell trials, too. He was NY-ESO-1 negative but MAGE positive. Unfortunately, the t-cells have to grow for 12 weeks, and his tumors in the lungs and pleura were too aggressive.

I often wish we had maybe tried embolization or ablation to see if that had bought him time to wait for t-cells.


#23

The main thing is to take care of the immediate tumor first with surgery and radiation. The treatment varies depending on the tumor size and if it can be removed with margins or not. If the tumor is over 4-5 cm in diameter or bigger they usually recommend Chemo in addition to surgery. Sometimes chemo or radiation helps reduce the size for easier extraction. Sometimes chemo does not really do anything but prevent the tumor from growing faster until it can be removed. Every patient is different.
Be aware that radiation and chemo do not help at all the wound heal well. I had my daughter with an open wound nearly 8 months.

The lungs is a different story. The chemo may help reduce the spots but only surgery removes them. I have seen cases on this site of radiation helping but never seen radiation alone remove the disease.
The problem is the size of the spots. When they are small there is really nothing they can’t do to remove them or even radiate them effectively. In some cases they don’t really know if the spots are cancer or not. They only know if they are cancerous if they are big or if they grow, or if there are too many of them. That is why CT scans every 3 months (insurance do not pay if you do more) is the best monitoring tool.

I am not comfortable doing just that for my daughter but after seeing 4-5 oncologist from several centers including MD-Anderson I felt that was the best choice for my case. I think enjoying the life as long as possible is also the best I can do for her for as long as she can.

Note that it is a long road ahead, but there are survivors out there and there is no reason not to try to enjoy life during this hard journey. I wish you and your family the best during this difficult times. There are many families going thru what you are going thru on this forum.

Regards,

Ricky


#24

Hi,

I am considering the genome testing.
I was just wondering would people recommend Foundation One? It is £3000?

I’m really willing to trying everything but do not want to throw money down the drain.

Any advice will be much appreciated
Thank you


#25

Our insurance covered the cost of the testing for my husband


#26

My doctor had said that the testing isn’t worth the money with this cancer. I told him I would pay anything and he suggested not throwing my money away. My daughter had her tumor removed in July 2017, then ifos/doxi was NED in November then came back with a vengence in her lungs in Feb 2018. She did the Tcell/IL2 trial, Then Nivolulab(spelled wrong), Now she is on Yondelis hoping to shrink the tumors in her lungs. She was on Pazabonib back in 2017 but it collapsed her lungs twice so it isn’t suggested she do Vorient since it is basically the same drug. At this point we will try anything to keep the tumors at bay so she is breathing okay and is enjoying her life now. Hoping the Yondelis lasts a long time. This cancer is a nightmare once it spreads to the lungs, so hard to go through all this :frowning: I pray for all with Cancer and even harder for synovial sarcoma patients.


#27

If you are tested for a study or trial, the company putting on the trial will cover the cost. For what I’ve seen if T cell therapy, it’s a crapshoot at best. Someone else in this thread mentioned that the T cells take around 3 months to grow after the initial 2-4 weeks for the test to determine if you and your tumor are eligible for T cell treatment. Doxilirubicin and dacarbazine or dox and lartruvo are better options if the Yondelis stops working. If you want to do T cell, you need your most recent tumor (s) for testing, in addition to blood testing. Synovial sarcoma is notorious for shifting cell types, i.e, even if you test positive for MAGE and NY-ESO in your most recent tumor, your new tumors may not respond to the therapy that would work on your last tumor sample. T cell takes a long time to get going, and it is far from a sure thing. It may be time to face the music, get your affairs in order, and go on hospice. I’ve seen patients do chemo to the end, and it’s ugly. Quality of life is the bottom line. Meet with a palliative care team, and be realistic. Your doctor and a Palliative care team can help guide you through this with regard to the best course of action at this stage of the disease. I pray that you can find a systemic treatment, but in the meantime, find a palliative care specialist to help you look at options.


#28

DON’T know your age or where you live but medicare recently started to pay for the testing.


#29

Thank you,

I have asked why the doctors haven’t mentioned any kind of surgery but his mom hasn’t answered that question …not sure why this doesn’t seem to be an option for him. He just completed 4 days of chemo.


#30

The only reason is probably they are hoping to reduce the size first. Sometimes Chemo reduces the size to allow surgery with margins or surgery that does not impact critical parts.

Sometimes chemo does not really do anything, just keeps the tumor from growing. It is hard to know since each tumor behaves differently.


#31

Thank you again for your message. This is so scary especially since I know so little about this kind of cancer. Never heard much about it until he was diagnosed. As with all cancer, seeking and finding the right treatment is critical. Hearing from those who are going thru this or have gone thru it not only provides information but comfort. So again, thank you for your time.

Best wishes to all


#32

You are welcome. It is the worst thing that can happen. I have not been able to sleep since my 15y girl got diagnosed. So any help I can provide let me know.


#33

I completely agree with Ricky. Is there any kind of diet or exercise that any of you follow ? Does that help in any manner ?


#34

My daughter is not following any particular diet. She does exercises a lot. Not sure if any of that helps but I don’t see how it can hurt.


#35

My Mom had a massive and shockingly aggressive undifferentiated sarcoma. Unfortunately we didn’t have time for much research, but in hindsight, there are different things I would have done.

We had an interesting meeting with Dr. Yoon - a surgeon at MSK in New York City. He had worked on trials during his training in Boston using radiation therapy in addition to chemo pre-operatively. He maintains that radiation prior to surgical removal resulted in a significant decrease in recurrence. He said he was a black sheep at MSK for being an advocate for this, but felt strongly that the numbers were just too compelling to ignore. I wish we had done that before her first tumor was removed. Once a sarcoma comes back, it is expected that they will just keep coming back. So, eradicating the first one is important. His view is that the radiation helps to treat the margins.

I would also have had my Mom work with herbalists to compliment and help support her body through medical treatment. Namely, I would have contacted Patrick Fratellone MD RH (AHG) FIM (https://www.fratellonemedical.com/) and Lise Alschuler N.D., F.A.B.N.O. (https://www.drlise.net/)

They would have helped her get tested for chemo tolerance and also run pathology tests to try to figure out which treatments her specific tumor might respond to. They also would have monitored her overall health and worked with her to make the climate of her body as un cancer friendly as possible and keep her immune system from being obliterated by the chemo.

Lasty, when it came to chemo I would have tried photo dynamic therapy which is more directed. While my mom’s tumor was definitely taking over her body, it was the chemo (Doxorubicin) that killed her.

I am so sorry that anyone has to go through this. It is so scary and sarcomas are so elusive.

By the way, she was being treated by Dr. Schwartz at Columbia Prep. I would NOT recommend him or that place. It is archaic. Her surgeon, however, Dr. Kato, performed a miraculous extraction of her first tumor.

I much preferred MSK, but unfortunately we ran out of time.


#36

Hi Ricky,

Diet is very important, I believe. Though at a certain point when chemo gets involved sometimes people just have to eat whatever they can possibly keep down. See my main reply - there are two holistic practitioners listed that would be worth contacting.

Wishing you lots of luck.


#37

Thank you for your message. I am sorry to hear about your mom. I will share the info with my family. God Bless


#38

Wishing you lots of luck. Do good research and get as many second opinions as you can. Sarcomas are very elusive even to sarcoma specialists. Don’t give up and don’t take any one person’s word as gospel.