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Synovial Sarcoma - Online Support Group

The longest period of remission in SS


#21

I’ve had both my prior lung mets removed via thorachotomy at MD Anderson. Surgical removal is still the standard of treatment, and it’s covered by insurance. Lungs are where the mets keep showing up, but they are slow growing, and chemo did affect them.


#22

My primary mass was in my left wrist, I have been clear 31 years. My treatment was two surgeries, 6 weeks of radiation and near two years of chemo.


#23

Wow 31 years that’s just fantastic! Did you have any reoccurances or mets at all?
Can i ask how large the tumour was? Did surgery achieve clear magins? It was a long time ago i know but do you happen to know if your tumour was bisaphic or Monosaphic? And if it was ssx1 or ssx2? Many thanks and continued good health to you!


#24

I had no other Mets. The mass was 2.5 cm in size. They said it was end stage 1 beginning stage two. So they were aggressive in my treatment because they caught it early. The key was my location of the primary mass. It was visible and surgically accessible. At the second surgery they felt that any cancerous tissue had been removed. However, the treat there after was the same as all other cases of SS at that time. I was 24 at the time of diagnosis and I’m 55 now.


#25

That’s great to hear… May you’ve healthy years ahead
My son had the same issue on his neck. Your message give me enough strength and I pray that my son also will have healthy years in his future


#26

Hi there…

I am so sorry about that. Have you heard of Dr Sant Chawla in Los Angeles? Look him up online. We love in San Diego and are doing everything down here at the moment. But we did go see him and he has some very promising trials etc. one man I met there has been going there once a week and his tumors are getting smaller etc. call an ask to talk to Dr Chawla. He’ll talk with you on the phone. I hope that helps. I’ll keep my fingers crossed♥️


#27

Hi…can you help me with email I’d of Dr Sant Chwla , After surgery I still need to close option on further treatment. It has been 01 month & 11 days from date of surgery and I am getting different opinions…


#28

Just make sure that you’re getting treated by sarcoma experience doctors. That’s very impt.
Which area is affected? What grade tumor you had? Where you did surgery? What are your further treatment plans?

My son is in similar situations for his neck. Surgery over now doing radiation therapy


#29

Hi,
During radiotherapy, i feel we need to add curcumin supplement to be taken atleast 2 mg. Sarcoma are radio resistant, few research done shoes adding curcumin makes the sarcoma cells radio sensitive, so effectively gets killed.


Pls search in Google for sarcoma radio sensitize curcumin. This should give us lot of articles.


#30

The dose atleast 2 gm.


#31

Hello
What have you decided on your treatment? Me too in a similar situation as doctors have varying opinions. But for my son, we’re deciding not to do chemo. His surgery and RT is over.


#32

That’s great news. God bless
What was grade of tumor? Did you still do your scans? You didn’t do radiation therapy?


#33

I was three years June 15, but it seems like every time I have a lung scan, there is something “interesting.”

Is anyone out there who had head and neck radiation dealing with osteoradionecrosis of the UPPER jaw (hard palate)? It normally occurs in the lower jaw…but since I insist on being different, mine is the hard palate.

I did not have a free flap done because: 1) My surgeon has seen more go bad than good and 2) My defect is so large…apparently free flaps are for small defects, not entire soft palates.

If the osteoradionecrosis continues to progress, they will be forced to take out the dead hard palate and replace it with a giant free flap.

Anyone with experience with free flap surgery or osteoradionecrosis, I would love to hear from you.


#34

What have you decided with your further treatment option
I’m also confused for my son for his next step
Did you manage getting in touch with Dr chawla


#35

I was in remission for 17 1/2 years. Came back and now it won’t leave. I have had 4 surgeries. I did radiation and chemo. I did 2 1/2 years of immunotherapy. Now I will be starting votrient tomorrow


#36

25 years for me!

Got it at 20 in my right arm and they took a lot of tissue and muscle out with it as it was intertwined in it. Did surgery, radiation, brakey therapy radiation and chemo.

Now after all this time I have weird things happen to the spots it was radiated, or aches as well. Dr says that’s the affects of the radiation, no one knew long term issues. Or i’m old. :grinning:


#37

I will have had no evidence of disease for 19 years this April. I was diagnosed with a stage III synovial cell sarcoma of the upper left thigh in November 1998. I had two reoccurrences to my lungs in 2000 and 2003.


#38

I’ve already spoken with Mito, but I figured I would share my survival years to this link. This year will be 40 years since my first surgery at age 6.5. I had re-occurrences with surgeries and two treatments of radiation(I chose to quit) at ages 24-26. So I wouldn’t say I have 40 years of remission, but I would say I’m a 40 year survivor come this May! Best Wishes to you all!


#39

So far 7 years and 4 months, from a left wrist SynovialSarcoma


#40

I just hit 10 years after Grade III synovial sarcoma in my knee. Counting my blessings everyday.